The Fight To Inhale

Another Day, Another Doctor Appointment

2012-01-10T13:55:00.000-08:00

Yesterday, I had a follow up at my CF clinic. After a bout with the stomach flu and then a miserable head cold, I am happy to say that my lung function stayed the same and my weight didn't change either. My sinuses were still draining, but at least it was all clear. I told my doctor that Jalapeno Cornbread worked wonders for my cold. He laughed and told me that he didn't think he could prescribe it to the other CFers with colds.

I'm serious though, my grandfather gave me some of that cornbread when my sinuses were so swollen that I had an unbearable headache. The cornbread worked faster than the Advil I was taking. I spent most
of my cold eating Mexican food, just to keep my sinuses happy.

The rest of my appointment went fairly well. I had my usual complaint about not being able to be as active as I used to. Not much he can do there. And we went over the pain in my back (I tore a muscle a few months ago and the pain has been slow to go away). We talked about my crazy blood sugars (mostly lows) and ideas on how to put on more weight. We talked about how much fun I have riding on my grandfather's quad (and how much gunk it clears out). My doctor recommended that I should ride the quad at least twice a week. I guess if the doctor orders it I should do as he says. Darn :o) Then he ordered a bunch of labs, I took a Xanex (I have a real phobia of needles) and went down to the lab.

That was the fastest lab draw I've ever had. And the technician had a lot of vials to fill. Of course the Xanex worked a little too fast. I had a hard time focusing on stuff and kept dropping my notebook.

Don't think I was crazy enough to drive myself home after that. My mom drove me to my appointment. And she drove me home. I took a nap on the way home. I went to bed early and slept like a log. So, the Xanex was really helpful with having labs done. I just can't plan anything for the rest of my day. And I don't like the drugged feeling. I feel the same way when I take Benadryl. So it's pretty safe to say that I'm only taking the stuff for labs and that's it. Luckily, my doctor is aware of my problem so he only schedules labs when necessary.

So now I am clear headed, it's a bright sunny day out (not normal California winter weather). I think I'll follow doctor's orders and take the quad out. With a helmet of course.

End of 2012

2011-12-30T16:02:00.000-08:00

I hope everyone had a Merry Christmas. I did. Christmas Day was low key and fun. I spent the whole day eating. Hopefully some of those calories went to my hips. I have to say I lucked out. I got the first two seasons of Big Bang Theory and a gift card for the third season. So I'm set to have a a Big Bang Theory marathon. I even have a new popcorn maker for endless popcorn.

The Christmas season always tends to get busy. In a good way though. I like all the cooking and baking. I enjoy sampling all the different meats and cheeses. And pasta, Yummmmm. Of course tomorrow is the last party of the year. I plan on spending it with friends. Hoping that there will be more than carbs available for snacking.

I figured I'd try to get one last post in before the New Year. Of course just because the holiday season tones down doesn't mean I get a break. January is the birthday month in my family. We have at least one birthday each week in January. I am so glad I have a birthday in July it's not so close to the holiday season that people are done with parties and it's in the summer when you can have water fights and lots of swimming.

With the New Year coming up, I guess I should be making my resolution list. Haven't figured out my New Year's resolutions yet. I guess the main one would be to gain some weight. Maybe I should try finding a workout routine that I can do (and enjoy) despite having to use the oxygen. I hear that there's a water aerobics class for seniors and disabled people at the local gym, so I am thinking about finding the price to join and trying that out. I miss being in the water. I miss hiking, and riding my bike. I just need to figure out to do all this with this heavy tank tagging along.

I'll see both my regular doctor and the transplant doctors in January. See how that goes.

Hope Everyone has a Happy New Year.

For Transplant related posts click here.

Where's the Energizer Bunny When You Need Him

2011-11-23T19:05:00.001-08:00

This week we have Thanksgiving to lookforward to. As I am writing this, I'm looking forward to theThanksgiving Feed my Bible study is having Tuesday. Pretty excitedsince it means I get an extra day of eating.

My doctor appointment went fairly well.My weight is slowly creeping up. No change in lung function, butusing the oxygen while I exercise seems to help me with the gaspiness(They call it shortness of breath or SOB). The doctor says theexercise will help keep my heart and muscles strong. So that seems tobe the goal. Try to keep everything else in working condition whilemy lungs go down the drain.

He did say that some CFers last quiteawhile where I'm at now. I told him it wasn't a problem of "lasting".It's has to do with my quality of life. I'm very adaptive, so while Ican't run or swim, I keep my mind busy and I'm okay. But what happenswhen I can't keep my mind occupied? And besides, it's prettydepressing sitting around and watching everyone else doing all thethings you used to enjoy. I did say that if I hit a point where I canno longer eat, I'm calling it quits. Food is more than nurishment tome. It's an experience. And taking that away would make me completelymiserable.

On a happier note, my niece visitedthis weekend. Since it was way too cold outside (cold air gives mesevere coughing spells), we stayed in and had a picnic on the livingroom floor. She really seemed to enjoy it. Then we put on aprons (mygrandmother made my mother and me these cute aprons out of Hawiianstyle fabric). I took pictures of my niece wearing my mom's apron. Itwas too cute. Then we baked chocolate chocolate chip cookies. She hadfun with all the mixing. The hard part was not letting her eat theraw cookie dough. Children don't understand why they can't just lickthe bowl. Besides the health reasons, I didn't want her having asugar high with no outlet for the energy. The cookies turned outgreat. My mom took my niece to deliver the cookies to nearbyrelatives. She was pretty thrilled.

When they returned my niece donned onthe apron again and helped my mom make dinner. She enjoys putting allthe spices in.

After my niece had returned home, I waspretty worn out. I don't have much energy to begin with and she seemsto take all I have. I love having her over though. It's just thatwith kids this age, you have to change up activities every 15 minutesor they get bored and start getting into trouble. Fifteen minutes isabout the max for their attention spans. I have learned to divide bigtasks into several little tasks and with that I can keep her busylonger.

I do envy her energy. I miss the dayswhere I could just go, go, go. I miss singing without getting lightheaded.

For transplant related posts please go here

November Update

2011-11-12T18:38:00.001-08:00

I know it's been a while since my last post. Things have been chaotic. Lost a family member at the beginning of October. His memorial was at the end of October. We are now trying to get back to our lives. The world doesn't stop just because you lose someone, but how do you pick back up? You can't pretend that person never existed. And you can't curl up into a ball letting the world pass you by. I would think that the best way to honour a loved one is to live the best life possible that you can.

I have been using the oxygen for about a month now. I get to do a lot more activities. So that's good. I miss swimming though. Since my sats only go down when I'm active, that's the only time I have to use the oxygen. I don't need it for sitting at home. I see the doctor on Monday to tell him how I've been doing with the oxygen. I also have to talk to him about my shakes. I've been slowly putting on weight which is great, but I received a letter from my insurance saying that they weren't going to pay for my shakes anymore. I can't afford the shakes on my own and I can't afford to be losing weight. So I need to know what to do next. Insurances never make things easy on you.

I had an appointment at the transplant center. It was short. I had let the social worker know about my stepdad's passing. She was surprised I had shown up to my appointment. I explained that in my experience when a doctor cancels on you, you get a new appointment within a week. But when you cancel on a doctor, you're lucky to get an appointment within two months. There was no way I was going to cancel. She seemed to understand. She notified the rest of the team about what had happened. That's the nicest those doctors have ever been to me. It even shocked my mom.

Halloween marked my Holiday Kick Off. For me, it means pouring through cookbooks and drooling over various recipes. I love food and I love preparing it. The idea of experimenting with a new dish makes me excited. I look forward to sharing my experiments with family and friends. Luckily, they seem to enjoy being my guinea pigs.

As far as the holidays go, I am getting booked. My dad is visiting the first week of December. I'm excited. Trying to find things to do that week. And I get to see my cousins. My Bible study group is having a Thanksgiving dinner this month and next month we have our Christmas party. These two months will be bittersweet since I'll be bumped to next next Bible study group at the first of the year (I'm getting too old for this one :o) It also means I'll be handing over the reigns to movie night to someone else. Not sure who yet. But I am looking forward to the next two months. I'm hoping to end the year with a bang.

For transplant related post please click here.

October Update

2011-10-10T14:11:00.000-07:00

September was pretty eventful. I wound up in the hospital due to severe dehydration. The attending their completely irritated me. He would not listen. He kept ordering lab draws to the point that I had bruises and my veins were going on strike. I kept trying to tell him to lay off and he wouldn't. I was so happy to finally be going home.

At home I wound up with a severe allergic reaction. So I was on Benadryl for a week. So I was pretty useless during that time.

When I finished home IVs I went to my follow up appointment. My lung function had actually gone down. I needed a break from IVs so I didn't go back on meds. I did gain all the weight back that I had lost while sick. The doctor did a walking test on me. I've been complaining for awhile that when I walk around or try to work out, my heart rate keeps going crazy and my brain starts to scream at me. But I kept getting told that I was having an anxiety attack. I couldn't understand why a simple walk would cause an attack so I just kept pushing myself.

So my doctor ordered a walking test. Instead of testing my sats after I walk (which is how the walking tests at the transplant center are conducted) my doctor ordered that my sats should be checked while I am walking. Well, while walking I dropped to 85%. When I stopped and sat down my sats shot back up. So now when I workout or exercise, I have to use oxygen. It's going to take some getting used to.

My doctor also took the anxiety I feel when I get labs done into consideration. Since I already do relaxation techniques and am still having issues my doctor ordered some anti-anxiety medication. I'm supposed to use it only for labs. We're hoping that it'll relax me enough so that my veins won't constrict. We'll see how it works the next time I have labs.

The following day, I had to take my dog to the vet. He managed to get a fox tail deep into his paw. The vet had to sedate him and really go in deep to remove it. She let me stay in the room for the whole procedure. My dog is back to normal now. He's already trying to chase the sheep again. I don't think he got the memo on how to be a Lhasa Apso.

During all this, I was moving to a new house. So the stress with being sick was combined with the stress of moving. We still don't have everything unpacked.

I also was able to talk to COTA about keeping my blog open. We came to an agreement. I get to keep my Fight to Inhale blog going and use their site for all transplant related blogging.

As you can see it's been a pretty hectic month.

For transplant related posts please click here

Somber

2011-10-10T13:44:00.000-07:00

A lot has happened since my last post. I was planning on providing a lengthy post today. That post is still in the works.

Today is a somber day. Last night my stepfather passed. My mother found him when she got off work. The coroner told us it looks like he had a massive heart attack. Everyone is trying to cope with the news. My mother is taking it very hard. No one should find their loved ones like that.

View On Doctors Part 2

2011-09-12T10:27:00.000-07:00

I hope everyone had a nice weekend. While most of the country spent the weekend in reflection, for me it was time to move. Now all my stuff is in the new house (still in boxes) and my mother and I have the joy of unpacking.

Over the weekend I received a comment on my post "My View On Doctors" that I felt needed a new post to give an appropriate response.

It was mentioned by someone (I'm sure there are more people who feel this way) that they are hesitant to question the transplant doctors for fear of not being listed do to "non-compliance". It is intimidating dealing with a doctor (or team) who ultimately make the decision on whether you get to live or die. That was my fear when I first met my transplant team. I know I can be argumentive, opinionated, and just plain stubborn. I didn't want them telling me that I wasn't a good candidate for a transplant just because we can't agree on how my health should be handled.

If you've read my posts about that initial visit, you know that it did not go well. I tried being nice and "compliant". I wound up in the ER (severe allergic reaction coupled with severe dehydration due to the tests). I had notified them that I had a contrast allergy and that I dehydrate quickly. The doctors said that there was nothing to worry about. That arrangements had been made to keep me from reacting. When I was told what precautions were being taken, I felt that it wasn't enough, but didn't say anything because I didn't want to be non-compliant. That was a big mistake. I was rushed to the ER, they thought I was going to start coding. I was in the hospital for a week before I was stable enough to go home.

So when I encourage you to take the reigns when it comes to your healthcare, I'm encouraging a proactive role in your healthcare. Research your disease, meds, nutrition, exercise and any other treatments. Prepare yourself for a conversation with your doctor. I'm not telling you to undermine your doctor. I'm not telling you to be rude and call him all kinds of profane names. They do deserve respect. But if you feel uncomfortable about something please speak up. You are a key part of your health care team, you know your body better than anyone else.

My View On Doctors

2011-09-08T17:32:00.000-07:00

I find the doctor-patient relationship quite funny. Patients hate going to the doctor's office, and some are afraid to disclose all information for fear of judgement. It took me 20 years to find a doctor I can work with.

As a CFer I deal with doctors way more than I would ever want to. Over the past 30 years I have developed my own theories on doctors and how to deal with them.

Doctors are not God nor are they one step down from him. Some may think that they are, but they aren't so don't let them make you think otherwise. They are human. Intelligent humans who went to school far longer than most people would want to.

They went to school so that they can give you the best possible advice. That's what a doctor basically is. He's an adviser. You come in and list out your symptoms and the doctor gives you advice on what to do about it. You can follow his advice, seek a second opinion, or ignore it. You are not required to do whatever the doctor advises you to do.

You don't have to listen to him speak that medical speech that might as well be Greek with how much meaning it posses to you. You can and should stop the doctor, make him speak in a manner that you understand, and do not let him leave until you fully understand what he is saying. You don't nod your head, pretending to understand what he says.

Make sure you know the side effects of any procedure or medication the doctor prescribes. Keep in mind you also can refuse any medication or procedure. They can't force you to take or do anything. Your doctor is supposed to give you the best possible advice so you can make an informed decision. He knows the decision is ultimately yours. He can't bully you into anything, so don't let him.

When at the doctor's office make sure to voice any and all concerns. Don't pay attention to him acting like your wasting he's precious time. Doctor's are paid to be there. They are paid to listen to you. And a concern that may seem trivial, can be a symptom of something far worse. Doctors rely on the combination of several clues (symptoms) to make a proper diagnosis. If you withhold a clue, he may give the wrong diagnosis. The wrong diagnosis does no good for you.

This what I have learned through the years. When it comes to doctors you have to have a backbone. Sometimes you have to be a little rude. I've had doctors tell me that I'm not that sick, I usually tell them that they obviously didn't graduate top of their class. I have doctors threatening certain actions if I don't do what they want and I threaten legal action. I have brought in photos of strange rashes just so the doctor would know what I was talking about.

Now, when I visit my current doctor I bring a notebook with a list of concerns and questions. I don't leave till each one is covered. I also request copies of PFTs so I can compare them myself. I research medications so I'm aware of what side effects are cause for concern.

I listen to my doctor and take his advise to consideration. I don't always follow his advice (he knows it). This post isn't a bash on doctors or to put all doctors down. I like the doctor I have. He treats me as an equal and encourages me to make my own decisions regarding my healthcare. Unfortunately, not all doctors are like him. I've dealt with several attendings at the hospital who make me want to pull my hair out. And the doctors at the transplant center, while they are among the best they act like they are gods and I should obey their every command.

So remember, it's okay to stand up for yourself. You have the right to be spoken to not at. Your concerns are valid. No matter who the doctor think he is, he is only as good as the current advancement of science in his field.

SOB

2011-09-07T18:21:00.000-07:00

Shortness of Breath.

The first time I saw that on my medical chart, I thought, What the heck? Why would they put SOB as reason for hospitalization. I know I'm an annoying patient, but man that's kind of a rude diagnosis. Later I was informed what it meant.

So yesterday, I called my doctor's office complaining of shortness of breath. I've been feeling pretty good all summer and suddenly I'm having a hard time walking without gasping for air. I don't know if it's the heat or if the darn buggers in my lungs decided it was time to fight back again.

After waiting at home for most of the day, I got a call back from the doctor's office telling me to start taking Batrim and call on Thursday. I keep Bactrim on hand for emergencies but I am not a fan of it. It dries secretions making it harder for me to get stuff out and I wind up feeling tight chested all day. Not to mention my sinuses feel all stuffed up when I take Bactrim.

I will be calling the doctor tomorrow and letting him know that I am still gasping and now all tight chested. I don't want another trip to the hospital and am hoping there's something I can do at home, if we catch an infection early enough.

Not too happy about how I'm feeling. Supposed to start moving on Saturday and need to feel at my best. Moving is not a fun ordeal when you're healthy so feeling below par is going to make it a challenge.

On a good note my grandmother and I are on our second blackberry pie from this season's blackberries. Blackberries grow like crazy at the family ranch. We're hoping to make jam out of the rest. If we make jam, that should get us through the winter. The crazy weather has made the other crops produce very little this year. So we are going to have to stretch what we have.

I'm going to go dig into a pie.

September Update

2011-09-01T10:30:00.000-07:00

September's here. I wish I could say that means the weather will start to cool down. But in this part of California it doesn't cool down till after Halloween. Then we jump from hot to freezing cold. There's no fall weather. We only get a week of spring. I guess that's the downside of where I live. It's either really hot or really cold no easing into the next season.

As of right now I basically have two more months of summer weather left.

Hoping for a low key September. I have no appointments scheduled for the month and am working hard at staying healthy. My niece has a birthday coming up so we'll be celebrating. She wants a purple cake and Snow White. Of course at her age, she'll have a new favorite by the end of the week.

I am supposed to move in the middle of the month. See how that goes. Something always ends up lost or broken. But I'll be moving from three acres to 20 acres. There's lots of trees and a creek. And the property is right next to the family ranch. Can't complain about the location. I just hate all the packing and unpacking. Medical supplies always seem to take up way too many boxes.

I am going to miss the snow. The new house is below the snow line, so no winter wonderland for me. Here you get plenty of snow to play in, but not enough to be annoying. I'm going to miss it. And I will miss the smell of pine trees in the morning. Pines grow like crazy here. It's beautiful looking out the window and seeing pines all the way up the mountains. Oak grows at the new place, not pines. Oak just doesn't have that same piney smell.

I think the most annoying part about moving is having to update my address. I have to contact the three pharmacies that deliver to me, my CF clinic, the transplant clinic, Social Security, IHSS, and my insurance. That's on top of having regular mail switched over. It's crazy and a headache. It took me a year of calling before Social Security finally updated my record. I'm going to hate going through this again.

Finally Got the Shakes

2011-08-30T18:22:00.000-07:00

Nutritional Shakes I mean.

Insurance approved the nutritional shakes so I don't have to pay out of pocket. They aren't Scandishakes and don't taste as good but it is better than nothing.

I don't understand insurances sometimes. Mine wouldn't approve Scandishake because it is too expensive. I understand, it is a pricey drink (over $100 per month). The other stuff is cheaper by the dose, but to get the same amount of calories as what I would get from the Scandishakes I have to drink twice as much. Which means 4 cans a day. That comes to 50% more in price compared to 2 a day of the Scandishakes. If I did math that badly in school, I would have never made it into Algebra much less Calculus. I'm not sure how these people get to keep their jobs.

Anyways, I'm taking what the insurance will pay for. It doesn't have that weird metal taste that most shakes seem to have (which I hate). It has this weird heaviness though. I'm going to have to experiment with the stuff to make it more palatable. I mean if I'm supposed to consume between 3-4 cans of the stuff, I need to come up with ideas as to how to do that. I wonder if I can use it to make cookies. At least it doesn't upset my stomach like some other shakes do.

I am still looking up high calorie recipes. It's hard these days since so many people are trying to lose weight. I want to gain weight but don't want to consume unhealthy calories. I need some avocado trees. Then this weight thing would be no problem. I have found that if you look on the body building sites they do have some good ideas for nutritional high calorie foods. Some just lack in creativity. Darn me for inheriting my grandfather's palate.

On an upside. We are starting the fundraising journey for my transplant. All of the details from the transplant and fundraising aspect will be posted here

Glossary

2011-08-25T17:43:00.000-07:00

The Glossary is a work in progress. This just gives a general definition of commonly used terms in the CF world. By no means is this to be considered medical advice. I have tried to include links that give a more in depth explanation than I can for each term. Please let me know if I am missing anything.

65 Roses: Another name for Cystic Fibrosis.

ABG:

Allergic Bronchopulmonary Aspergillosis: ABPA. Asthma like response to aspergillus colonization in the lungs.

Aspergillus: Fungus that can attack CF lungs.

Beating: See CPT

Breathing Machine: See Pulmo-Aide

Cayston:

CFer: Patient with Cystic Fibrosis. Usually can be identified by their "smoker's" cough, purple fingernails and blue lips (natural Gothic look) :o)

Chest Vibration: See Vest.

CPT: Chest Percussive Therapy. Therapy designed to loosen mucous from the lungs so that the patient my expel it.

Creon: Brand of pancreatic enzyme. Aides in the digestion of fats, sugars, and proteins.

Cystic Fibrosis: A genetic condition that mostly affects the lungs and digestive system. Other organs are affected over time.

Cystic Fibrosis Foundation: A place to get up to date information on Cystic Fibrosis, medications, treatments, trials. Anything related to CF.

DNase: See Pulmozyme

Dornase Alpha: See Pulmozyme

Enzymes: Catalysts in the body that speed up the breakdown of molecules. When used on this site, it refers to the capsules that most CFers take to aid in the digestion of food. There are a few brands on the market, but they usually all contain a combination of protease, amylase, and lipase.

Hyper-Sal:

Lock Up: Term referring to hospitalizations.

Lung Oyster: Mucous expelled from the lungs.

Miralax: A laxative that is mixed in liquid. Helps rehydrate the intestines. Certain brands of enzymes dehydrate the intestines. Miralax reverses this and reduces constipation.

MRSA:

Mucous:

Nebulizer: Cup like device that connects to a pulmo-aide by a long plastic flexible tube. Designed to aerosol liquids so they can be inhaled during treatments. Several designs out there, each corresponds to specific types of medication. Allowing optimal delivery and the least medicine waste.

O2Sat:

PFT: Pulmonary Function Test. A serious of breathing tests that measure how much air the lungs are able to take in and expel in a certain amount of time. Gives doctor an idea of how well the lungs are doing.

Plug: Thick wad of mucous blocking airways. Some are like small pebbles others are lettuce-like in shape. Hard to bring out. Can be painful.

Postural Drainage: Patient lies at a slant to the ground. Head towards the the ground and feet up towards the ceiling. Gravity pulls mucus from small to large airways where it can be coughed up.

Pounding: See CPT

Pseudomonas Aeruginosa: Bacteria known to colonize lungs of CFers.

Pulmo-Aide: A medical grade air compressor. They're designed to provide a certain amount of air pressure needed for nebulized treatments (usually 8 liters/minute). There are several brands out there.

Pulmozyme: An inhaled enzyme designed to break up mucous. Makes it easier for CF to expel the mucous and helps reduce infections (and plugs).

Resort: Term referring to the hospital.

Scandishake: Hi Calorie nutritional shake. Usually about 600 calories per serving. Comes in vanilla, chocolate, and strawberry.

Spa: Term referring to the hospital.

TOBI: Inhaled tobramycin. Antibiotic designed to weaken the bugs that tend to colonize CF lungs. Doesn't taste too good when inhaled. Can cause sore throats. Recommend milk or butterscotch candy to coat throat. Chew lots of peppermint gum to get rid of the medicine taste after treatment.

Ultrase: Former brand of enzyme. See Enzymes.

Vest: An inflatable vest is attached by flexible tubes to a machine that vibrates it at high frequency. The vest vibrates the chest to loosen mucus. Kind of makes you look like an alien in a space suit.

Back From Camping and a New Toy

2011-08-25T16:22:00.000-07:00

The camping trip was great. Breathing in the salty coastal air makes me feel much better than when I inhale Hyper-Sal. It could all be in my mind or it could be a real difference. I just know that if I could, I would live on the coast full-time rather than these short visits. I'm hoping to make another trip in October for the whale migration. That should be fun to watch.

The coast was freezing though. Usually, there's a break of two hours during the day where it's warm enough to wear shorts and brave a dip in the ocean. This time it was cold all the way through. I kept myself pretty well bundled. I was thankful for the sleeping bag and cot my dad gave me. I stayed warm and dry.

Packing for a camping trip can be tricky, but doable. In order to maintain good health I can't skip out on treatments. And with no electricity, it takes a bit of planning. That's where a battery operated pulmo-aide comes in. There's a few out there so you have to find one that fits your needs. I like mine because it's light-weight and I can recharge the battery in the car. When I was younger and there wasn't a battery operated pulmo-aide, my family brought a generator so I could do my treatments. Generators are quieter now than the one I used, but it served it's purpose. I got to go camping. They still don't have a battery operated Vest machine so my mom does manual CPT. So both of us have to take time out to do my treatments. When it comes to packing my meds, I always pack a couple of days extra. It's better to be prepared than run out of meds and have an "Oh crap" moment. I have a small cooler specifically for meds. Keeps me from having to dig in the food cooler for little vials of pulmozyme or TOBI. I also let my doctor know I'm going camping so he can give me a few "just in case meds". Usually it's Bactrim and more Prednisone. Those are in case I get sick and need something to tide me over till I can get to a CF clinic. I also pack a ton of Purell. I'm out in the dirt and don't want to give germs an invitation.

So a camping trip is doable. And it's worth all the planning. I had a blast watching my dog chase the waves. And my niece learned to collect shells.

While I was camping, I received a phone call from Hill-Rom. I had been calling them and asking for a new vest machine for the last two years. They kept having reasons as to why I couldn't have one. It was getting to a point where I was going to just save the money and buy one myself (I'd be in my forties, but hey). See my Vest is one of the earlier models (103) weighs half as much as me and has no wheels for me to move it around. My first one I had used so much it finally gave out, and I was on my second one. I had already twice as many hours on the second one than I did on the first. It seemed I was going to be stuck with the same model for the rest of my life. Then I got the phone call. Seems I finally qualified for a free upgrade. I was ecstatic. They sent me the latest model. It weighs about 17 lbs (which is less than my dog). It has its own carrying case with wheels. And it is so easy to use. I sent back my old model. The new model should be able to travel with me. And I put it on a wheeled table so I can push it from room to room.

On top of camping and a new Vest, I am moving. For someone who enjoys permanence I sure move a lot. I'll be closer to family (right behind my grandparents) and out in the country. The sad part is I have to say goodbye to mountain life. I love having my own winter wonderland when it snows. I will dearly miss that part. Upside, there's a lot of trees at the new house so I'll get to be outside more (no trees here, so it gets like a desert in the summer).

The big move day is in September. I still have a couple of weeks.

Monday's Appointment

2011-08-05T13:52:00.000-07:00

I had an appointment with my regular CF team on Monday. Since I was feeling so good, I figured it would be a short appointment. Boy, was I wrong. I might have been feeling good but the other CFers at clinic weren't. The team had to deal with them before getting to me. My PFTs are up. Not where I want them (I prefer at least 60%, I'm at about 29%).

Not much change in my weight so I'm going to have to start drinking shakes. Unfortunately, my insurance won't cover the one my doctor wants (Scandishakes). The shakes my insurance will approve makes me sick, so we're going to see if my insurance will approve a different shake that's not as pricey as Scandishake. If I could I would just pay for the Scandishakes myself. I've had them before without any problems. The state doesn't provide me with enough funds to be paying out of pocket for them. So I'm waiting to see if I'll get the other stuff.

We still have no clue as to why I feel exhausted by midday. I sleep eight to nine hours at night and still need an hour nap in the afternoon. The doctor wants me to get a CT scan. Basically, trying to see what else we can do since I'm "too healthy" to be put on the list. He also said that my sugars plummeting is probably a sign of my pancreas giving out. The doctor thinks that my pancreas isn't making glucagon anymore. So now I have to do more snacking to keep my sugars level. This CF business is hard work.

A good note. My sinuses had been swelling up pretty badly and causing me some severe pain. So my doctor recommended I try taking Ibuprofen each day to reduce the swelling. Well, it worked (woot, woot) and I noticed that I was in a lot less pain in general. My back isn't spazzing, my knees don't hurt, and my hands aren't locking up. So I asked him about taking some ibuprofen every day and my doctor said I could as long as it didn't upset my stomach. He gave me a maximum to not surpass. So now I'm taking a small amount of ibuprofen each morning and I am able to be more active throughout the day. I'll see in a couple of months how I'm feeling.

So an appointment that should have lasted an hour, lasted for three hours. I was starving by the time I left. I think I should start packing a lunch for these appointments.

August Update

2011-08-03T14:42:00.000-07:00

I think my last entry was a little hurried. I was trying to cram a lot of stuff into it and didn't adequately cover my appointment at the transplant clinic.

I can say that after a year of making the four hour drive (one way), my mother and I have decided to drive to Stanford the night before and stay at a hotel. That way I'm more rested for my tests.

The clinic is going through some changes. Some I don't like. Before, my appointments were in the afternoon. My afternoon PFTs are always the best. I've had time to clear crap out and a chance to eat a couple of times. Now appointments are being scheduled in the early morning. Not so good since I still have crap to clear out of my lungs and I can't eat right before a PFT (all that squeezing the air out can cause vomiting). The other thing I don't understand is that during PFTs I'm doing a long of coughing, but they don't ask for a sputum sample until I get to an examination room. By then I have nothing left to get out. This last time I had to jump up and down and then have my mom beat my side, just so I could bring up a sample.

The part that annoys me the most about the changes is that they are combining the Stanford Adult CF Center with the Transplant Center. I don't see eye to eye with the CF doctors there. And they have different ideas about my care. I constantly have to tell them that I will bring their ideas to my CF team at home. I see no point in switching care teams, when the one I have works so well for me. You don't find a doctor you like that often and I've had one for the last 10 years. Not switching teams if I don't have to.

One of the more positive changes is that the lab for all the blood drawls is right next to the new clinic location. Before I had to hop in the elevator, go down a floor and then walk all the way to the other side of the hospital. For someone with limited lung capacity, that was a long and breathless walk. Wish they had food next to the lab though. I always have a ton of blood taken out that I feel funny.

What I don't like about the lab is that all the spots for drawling blood are right next to each other with no dividers. I have trouble with having my blood drawn and have trouble with the site of blood. I had to keep my eyes shut the whole time, because they had a guy in the chair next too me having a massive amount of blood taken out as well. Sometimes people just don't think everything through.

The appointment ended with the doctor saying I still wasn't sick enough to be listed. I am starting to wonder what they consider sick enough. I can't work, I can't swim (which I loved), I can't hike, I can't run, I can't ride my bike, I can't chase my niece around. I can sit at home and watch TV all day. It's just exhausting dealing with these people.

Maybe some miracle will happen and my lungs will find a way to heal on their own. I tend to baffle doctors so maybe I'll do it again.

Mid-July brought my 30th birthday. Every CFer knows that is a huge milestone. My family threw an Over the Hill party for me. There was tons of food. And I had a blast. That night we camped out in my grandfather's tipi (my niece calls it a TV). Turning 30 was great. I guess it helps to be 30 and look like you're barely 20.

I think the issue with the Christian group has been resolved. We shall see. The people involved gave an apology and just said that they were trying to protect me. I let them know that I didn't make it to 30 by taking unnecessary risks. Also, if they wanted people to fly they need to let them fall on their butts a few times.

In a week I'll be camping on the California coast. Nothing better than salty air and hearing the ocean as you fall asleep. This should be fun.

Updates, Lots of Updates

2011-07-21T21:31:00.000-07:00

Well I got out of the hosptial. Still can't stand being in that place. One would think they would provide isolation patients with a better view of the outside instead of the outer wall of another building. Had some issues with the stay, but they were resolved before I had to roll any heads.

The day I ended IV meds my dog got bit by a rattlesnake, so we spent several hours in the vet clinic. They pumped the little guy full of steroids, pain killers, and anti-histamine. Then I had to okay the vet using anti venom. Drained my entire emergency account. The vet did his best, and I could tell by looking at his face that he was sending my dog home to die. That was June 30. My dog is currently laying stretched out on the floor fast asleep. He had a long day running at the family ranch.

So what did I do that the Vet didn't? I don't know. My dog was scared. He was so doped up that he should have fallen asleep at the clinic but he fought it. When I brought him home, I slept on the couch with him. I had a syringe and a glass of water. Every hour I put that syringe in his mouth and forced water down his throat. I crushed up his meds and mixed it in baby food, put all that in the syringe and again force it all down his throat. And I prayed. Praying is usually a good thing to do when you're in a pickle. I knew my dog had a slim chance of survival, and if he did survive he would lose his leg. I didn't sit there trying to make deals with God ("If you save him, I'll go to church every Sunday", or "I'll donate so much to the needy"). I just asked that he save my dog. I told him that I would rather a three legged living dog than a four legged dead one.

The next morning, I looked into my dog's eyes and saw him (they had this dead look all night). His eyes were all lit up and he had to pee. He even tried walking on his leg. The vet was amazed by the transformation. My dog was able to keep his leg. There was very little tissue damage. He's back to his favorite activities.

Should keep in mind that my dog is only 18 pounds. A full grown rattle snake can kill a dog his size. The vet suspects that it was a baby that bit my dog (they are more toxic than adults). I could claim that my dog survived because he was in excellent health when he was bit, or that I give him a good diet. I believe my dog surviving is nothing short of a miracle. Usually two vials of anti-venom are used for a dog his size (the vet only had one vial left so that's all that was used). My mom had come home early that day and my dog was bit three minutes later. My dog didn't go run and hide in fear after the bite (instinct is to hide), he came straight to me. The nearest vet was 30 minutes away and the only road there had construction going on and a long wait, the day we went through for some reason there was no construction so we sped on by. Everything working out the way it did was no coinsidence.

After my dog received a clean bill of health from the vet, the AC went out at my house so I headed over to the family ranch. I will have to say that this was a good thing. After the bite my dog has been afraid to be outside by himself. Where I live there are no shade trees so I can't be outside for long periods of time. At the ranch there is plenty of shade and no rattle snakes. So I've been working with my dog, getting him to enjoy being outside without me again. He's making a lot of progress. He'll go down to the pond by himself now.

While here at the ranch, my family threw a surprise party for my 30th birthday. It was fun. The theme was Over the Hill (family tradition when you turn 30). I loved it. I had skulls on my cake.

Wednesday I had another appointment with the transplant team. Still too soon for a transplant. I wonder how sick they want a person to be first.

I can honestly say that my life has not been boring as of late. I really need a vacation. Am looking forward to a camping trip on the coast next month. I plan on being lazy on that trip.

If You Tell a CFer No

2011-07-21T20:52:00.000-07:00

Are we still in the dark ages? I just received an email suggesting that a certain group activity isn't a good fit for me because of my "delicate condition." Since when is Cystic Fibrosis a delicate condition? To top it off, it's a Christian based group telling me I can't do the activity. I hardly call that being Godly. People never cease to surprise me.

When I heard about the activity, I made a request for certain accomodations so that I can participate. The accomodations are not that demanding and required little effort outside of me providing. I was just asking permission to bring what I needed. My request was not approved. And then I get an email giving a story about someone who knew when they weren't a good fit. I was pretty appalled by the email. I've participated in the particular activity all my life with family and other groups. So feeling like I'm being told that I can't go because of my "delicate condition" (I'm serious, the email referred to my CF as a delicate condition) is ridiculous.

And because it's a religious group, I'm not sure of my rights. The group is run by a larger religious group that employs people and runs a couple of businesses that I know of, so they do fall under employment rights of disabled people. But what about other rights for people with disabilities? And it's a Christian organization. Strictly because of biblical teaching, no one should be excluded from anything due to their disability, race, sex, worldly status. As you can tell I'm not very happy at the moment. I'm not even sure how I approach this.

The last time someone told me I couldn't do something was when I decided to study Genetics. And you know how that turned out. I proved them wrong and got my degree, in Genetics. I may only have 30% lung function, but I camp, I swim, I fish, I boat, I've been to Europe and Mexico, I drive a tractor, I bottlefeed orphaned ranch animals, and I write. You don't tell me no.

If it weren't for the fact that I actually have some responsibilities in the group, I would say screw it and find a new group that didn't use people's limitations as a means of exclusion.

In Lock Up: Again

2011-06-12T19:19:00.001-07:00

In the hospital again. Since my internet access is limited, I won't be able to post a full update till I get out. Hopefully that will be by next weekend.

Friday's Post

2011-05-30T14:48:00.000-07:00

Sorry for not posting Friday. Internet was on the fritz. I suppose that means you get two posts this week, weather permitting. Basically whenever the weather gets crazy (snow, rain, wind) I lose internet. The joys of living in the mountains I guess. This weather is not typical for a California May. By now I usually have a nice tan going and have the best swimming spots picked out. With all the rain and cold, I haven't set foot in a body of water yet. And we don't get tornadoes that touch down. Wednesday, four touched down in my county. Luckily, no one was hurt. A lot of property damage but that can be fixed.

Not much news in the CF world. May is Cystic Fibrosis Awareness Month so on weekends various cities have been holding Great Strides events. No miracle drugs on the market yet. Various drugs in the trial stages, but that doesn't mean they'll make on the market. So it's keep your fingers crossed and hope that something pans out.

I still haven't been listed for a transplant. I'm not sure how much worse the transplant center wants me to be before I can be listed. I go back in July to see if there's any change. This part of waiting is frustrating. I'm too sick to hold a job. My day is spent doing treatments and therapy. Sometimes it feels like I don't have a life.

I have found ways to keep busy. I preview movies for the monthly movie night with my bible study group. I sew, I write. I experiment with cooking. And I read. So at least I'm not sitting around all day feeling sorry for myself. I just get bored sometimes. I think that's the only time I miss living in the city. I enjoy the quiet of the mountains and the fresh air. But since I don't have a car, I can't go anywhere when I'm bored. In the city I can hop on a bus and go somewhere else for a change in scenery.

Maybe I should take up gardening.

I'm Famous!!!!!

2011-05-20T00:00:00.000-07:00

Most of my readers know that I don't post a lot of personal information. If it isn't about CF or any of my other blog subjects I don't write about it. A couple of months ago my dad and I agreed to have an article written (to see if there was an audience for a book). I'm not saying that it is taking off like wildfire, but there seems to be some interest in the story. There's even a picture of me and my dad at the bottom. Pretty cool. Guess I should start writing the novel.

So Sorry for Being MIA

2011-05-13T14:39:00.000-07:00

The title about sums it up. I was planning on taking a month off during summer time so I could finish school, but things went out of control. There were family issues, hospitalizations, family in the hospital, more hospitalizations, more family issues. It has been one crazy train wreck.

I did manage to finish my degree (picture to come soon). It's the most expensive piece of paper I own. I am hoping for a calm May so I can catch up on all my blogging. Lots of ideas.

I wish I could say that with my degree came a snazzy job, but as of right now I really can't work. Hospitalizations are occurring each month. When I'm lucky I get two months out of my prison cell. One would think that I would have plenty of time to write. This seems to be a challenge since no one wants to lug my computer back and forth during my hospital stays. I guess it's a sign that I should get something lighter, unfortunately that requires funds I do not have. I am thinking of just taking pen to paper and typing everything up when I get home.

You will be getting my random thoughts after the fact, but at least I wouldn't be MIA for such a long period of time. It's just a thought.

To top off all the craziness that's been occurring at home and with my health, I also lead a movie night for unmarried Christians. It's a once a month event. I preview a selected movie and write up discussion questions. Just trying to get people to think about what they watch. I'm all for a good comedy, or action movie, but a lot of movies out there have no real plot to go by. And I still find swearing very trashy.

I have thought about posting the movie titles and questions on here if anyone wants to have his/her own discussion on the topic. I'm just not sure if that's the direction I want this blog to go in. Maybe I'll post it on Book Keeper's Attic. I've been wanting to do a media section on there. Mostly, was planning on ranting and comparing movies to books.

Anyways. I am back. Hopefully for good this time. That way you guys can look forward to my weekly postings about my fight to inhale for a long time to come.

September is Here

2010-09-05T18:45:00.000-07:00

It's September. Everyone has started back in school, and even here in CA we got a respite from the heat. Not sure how long it will last, but it's nice. While everyone is going back to school, I am at home trying to get my writing muscles in shape after a few months unplanned hiatus. We will see how that goes. Maybe in a couple of years you'll find me in the best sellers list.

My niece celebrated her second birthday yesterday. She is growing so fast. I still have a framed photo of the the first time I held her perched on a shelf in my library. Now she's running and learning new words rapidly. I'm excited about what the future holds for her, and pray each day that I get to live to see her grow up.

I must say the party was great. My brother in law is great when it comes to preparing food and his daughter's birthday was no exception. The cake was a cool creation by a family friend (she owns a cake business in town). My niece was showered with gifts. I have to say that there was a nice balance between toys and clothes. Of course her final gift (provided by my mother) was the star according to my niece. My mom had found a bicycle that was my niece's size. The little girl wanted to test it out as soon as she saw it.

When I finally got home, I took a three hour nap. I guess the heat of the day got more to me than I thought. I miss the days when weather really didn't bother me. And if I did get hot, the hose was enough to provide relief.

For the rest of my Labor Day Weekend, I plan on staying home and possibly vegging on sci fi movies. Haven't done that in a while and I'm in a Stephen King mood. If tomorrow is cool enough I might even treat Mick to a walk in the park. If there's mud, he'll be one happy puppy.

Been Awhile

2010-08-31T15:36:00.000-07:00

I know I've been MIA for awhile. Had quite a bit on my plate. Luckily, it wasn't all CF stuff. I went back to school. Finally finished the last class I needed for my degree. I won't get my degree for a few months, but all my requirements are finished. I can now breathe and seriously cut back on the studying.

My family through a surprise party to celebrate my finishing school. I think we were all happy that I finally pulled it off. Took me ten years, but I did it.

Now that I'm done with school, I've been spending more time with my adorable niece and doing my crafting. Let's just say I can't wait for winter to hit, because I've made some cute winter pjs and a cozy looking robe. Besides all my crafting, I've been getting back into the church. Don't worry, I have no plans of getting all preaching on here. I just figured that it was time for me to stop being so wishy washy. And I was sick of having flaky people as friends (I am not referring to you guys Mary, Darin, Patty, and Joven). I guess I just hit that point where I wanted more meaningful friendships and a better relationship with God. So I dropped a lot of burdening friendships (literally my phone book looks kind of thin now) which also means I cut a lot of stress out. As for the friends I chose to remain in contact with, well they're the ones whom I have to call real friends. We share ups and downs, special events.

So now I'm trying to get back into the groove of things. Get back to writing and being consistent with blogs. So hopefully you all can bear with me while I try to get back into it all.

If You Try to Relax...

2010-05-28T08:00:00.000-07:00

What I had planned on being a couple of relaxing weeks, did not turn out that way. Mostly, it wasn't a bad thing. I just wanted to do absolutely nothing for a bit.

Last week, I ended up having to take my dog to the vet. He was acting all drunk like that Sunday and then just started shaking. After a few nights of no sleep, I took him in to the vet on Wednesday. Since I'm new to the area, I hadn't established a new vet for my dog. So Tuesday I was doing a quick search to find a good vet nearby (I don't like to travel more than 15 minutes for a vet, just in case it's serious). Upon finding one I had to schedule an appointment. The soonest I could bring my dog in was early Wednesday morning. Luckily, it turned out to be nothing life threatening. My dog had managed to hurt his hind quarters in some way. He was in a lot of pain, but nothing permanent. The vet prescribed doggie pain killers (this is after she twisted him into a puppy pretzel).

You would think that I would get to sleep now that my dog was drugged up, but no. My sister's graduation was that night. So I had to attend that. She completed a very difficult program in two years (only eight people graduated), so it was a big deal. The department put on a nice dinner for the graduates and their families. I devoured a prime rib (with class of course). I was able to have some quality time with my goddaughter that night as well.

After the graduation, still no rest. I needed to finish up my sister's grad gift before her party. Since she's into Asian designs I made her a hair clip with feathers. I also made a birthday for a friend of mine. Photos will be posted on Creative Yarnings.

Saturday was the big party. I had the job of watching my niece while everyone set up (horrible job, I know). She's quite cute. She was fascinated with the cows. She kept running to the fence and mooing at them. She collected leaves, ate strawberries, and just plain ran around. It's fun spending time with her, because the world is still a new place. She has to see everything and there is so much, she runs from place to place.

Once the party started, all the grandparents wanted to take care of my niece so I went back to talking with the other guests. The food was great. And there was tons of it. I ate so much, I thought I'd burst.

My mother and I did not get home till close to midnight, that's how long we stayed at the party.

This week was a little more relaxing. I did have a doctor's appointment but that will be a different post.

I almost have all my stuff unpacked from moving. It's kind of nice not having to search through boxes for stuff. A few things have vanished. I'm guessing a box fell off during transport.

I received Cayston. After only a week on it, people are saying I'm more energetic and have more colour in my face. I just notice that I'm more hungry. Not sure if it's the Cayston, or if I'm just starting to come back up health wise. Either way it's nice.

That's everything in a nutshell.

Who's the Expert?

2010-05-07T16:30:00.000-07:00

I saw my normal CF team on Monday and woo hoo no insulin. Actually, it's more like no insulin for the next six weeks. I'm supposed to monitor my sugars and then we'll discuss what to do at my next appointment. Apparently, falling asleep right after an injection is not a normal reaction.

Also, my A1C is at 6.1 which means I'm pre diabetic, not diabetic. At 7.0 I will be diabetic. So I'm not really sure why the doctors in Stanford put me through so much headache. I am aware that if I go through with having a transplant, I will become full blown diabetic. So that is something to think about.

My weight is down. So it's back to increasing those calories, all the while trying to get back into shape. Not an easy task. My doctor said that if the insulin wasn't putting me to sleep, he would recommend my staying on it for the weight gain (insulin can be used as a growth factor). But falling asleep makes it hard to work out :o)

My PFTs are up by a smidgen. But they are up. So that's good news for me. And to top it off I get to start Cayston! I have to wait for it to be delivered, which I was warned it can take a couple of weeks. But I get to start it. Hopefully, it'll put off my needing a transplant for a while longer.

Some bad news. Someone got the crazy idea that the FDA should approve the pancreatic enzymes that most CFers need for proper food digestion. Problem is, not all brands are created equal. I spent years trying different brands until finding Ultrase. Ultrase is the only one that works for me. With other CFers, it's the same thing. They have a specific brand that works the best for them. The FDA has only approved three brands and Ultrase is not one of them. I have about two weeks left of my enzymes and then I'm going to have to switch to a brand that is sub-par for my body. This really sucks.

I guess someone from Stanford complained to Davis that I act like I'm the one running the show. It's kind of funny really. What adult CFer does not act like they are running things? We spend so much time at appointments, in hospitals, having to monitor ourselves that we know what's going on. Sometimes before the doctor even figures it out. A doctor's power is dependent on the patient's willingness to adhere to the treatment plan. I'm not going to go through with a treatment unless I fully understand what it is for, what the side effects are (long and short term), and what symptoms I need to look out for. Doctors may be experts on the disease, but we are experts on our own bodies.

The Great Escape

2010-04-29T16:27:00.000-07:00

Finally came home on Friday. Problem is with coming home is that I spend close to a week just recovering from the hospital stay. I'm still on IVs, but I've pretty much recovered from my stint at Stanford.

Saw an endocrinologist while in Stanford. She put me on a sliding scale for insulin injections, and I have to do carb counting. Carb counting means that I have to count every gram of carbohydrates I will be consuming during a meal and then I adjust the amount of insulin to inject. Since I have an extreme fear of needles, injecting myself is impossible at the moment. My mother has to give me the shots.

My other issue is that the insulin makes me exhausted. I told the doctors at Stanford and they claimed that it wasn't the insulin. I even told the endocrinologist and she didn't think it was the insulin. I just find it strange that I can't even finish a meal before falling asleep after I receive an injection. And this happens every time. I have notified my own doctor. Hopefully, he'll have some answers or can refer me to someone who does. I did speak to the nurse there and she said my falling asleep after taking the insulin is not normal. Especially since my sugars are in the normal range after taking the stuff, there shouldn't be a reason for me to be tired suddenly.

Another plus to being at home is that I get to use my own glucose monitor. The one at the hospital requires a lot of blood for a sample. The nurse literally had to squeeze my finger until the blood was dripping before the monitor would read it. If I had stayed there any longer, I would have been bled dry.

My glucose monitor at home is the Freestyle. It takes a tiny sample of blood. I mean a paper cut would produce too much blood for this thing. I like it though. I can take samples from my arm instead of my finger and it barely hurts. For me that's a good thing since I use my fingers for a lot of stuff (sewing, typing...) and the pain from stabbing them everyday would be too much.

I didn't start with the Freestyle. My first monitor was an AccuCheck. I hated the finger sticks. My fingers were so sore. A close friend of my mother's is a diabetic nurse and she gets free samples of monitors all the time (companies want her to recommend their products to her patients). We had gone over to talk to her when I was first diagnosed with CFRD to get some information and tips on what to do. By then all of my fingers were pretty sore and I was holding off on my favorite hobbies. So this nurse had me try one of the Freestyle samples that she had. I really liked it, so she taught me how to use it and arranged for me to get one. So six years later, I'm still using my Freestyle.

Since my IgE levels are going down, the doctors did lower my prednisone. I was so happy. I'm not a fan of prednisone and do all I can to avoid having to take that medication. It makes my mind race, me feel like I'm starving, messes with my sugar levels, lowers my bone density, and probably a list of things I'm not aware of. So getting my dosage lowered made me very happy.

Now I am home. Sleeping in my own bed. Eating my own food. Playing with my own dog. And I get to see my own doctor on Monday. Life is as it should be...for now.

Lock Up Day Six

2010-04-21T16:58:00.000-07:00

I am on day six in Stanford hospital. The level of care is still extremely good. Kind of surprised at some of the services offered here. Patients are offered massage therapy. CFers get two sessions a week for free. Haven't had a chance to take advantage of it with everything else going one, but it sounds cool.

I don't think the doctors are used to argumentive patients. I'm not saying that I am purposely arguing. I just want to be sure that we are all clear on what I think about treatment, and what I am willing to do. One doctor actually told me that this wasn't a negotiation. I know they are doing their best. And I haven't told them about my science background (wanted to see how I was treated if, they assumed I didn't understand beyond basic biology). So they probably don't completely understand why I want a better explanation before agreeing to any treatment.

One doctor did answer as to why I feel pain in my port area even though it's been close to three years since the surgery. Nerves get damaged during the surgery (they have to make a pocket for the port) and they never completely repair. So every once in a while there will be extreme pain in the surgical site. Sort of like the nerves having a flashback of the surgery. It all feels very real, and the pain is real, it's just that nothing is currently cutting into the area.

Somehow broke my bed yesterday. First the foot got stuck in the upward position and it took awhile to get it to go back down. Now the head won't come up. I had to laugh. Most people "break the bed" doing extra curricular activities. I break one doing CPT.

My sister took a few days off and came over to Stanford to stay with my mom. It was nice having her. Someone to tease always helps the healing process. Her being here also helped my mom out. She didn't have to go back to the hotel alone, and my sister is good at providing a sympathetic ear when needed.

Unfortunately, my sister had to go back home today. She had a boyfriend, dog, and job to worry about. The joys of being an adult.

They brought in a bike for me to continue my workouts. I was so excited. I just hate the fact that no matter how far I build myself up, the moment I get sick I have to start the workout process all over again. This time though, I am starting the process while still in the hospital. Maybe that will help the rehab time.

Have had to deal with some issues.

My blood sugars keep going up, so I'm supposed to speak with an endocrinologist sometime today to find out the best course of action for me. I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) a few years back, but my diet and lifestyle were enough to keep it at bay (no need for insulin at the time). Now it's looking like I might have to start taking insulin. So far my sugars only spike up on prednisone days. Non prednisone days show my sugars to be low. So I'm guessing that if I do have to start taking insulin it will just be on prednisone days. I'll just have to wait and see what the endocrinologist says.

The whole concern about all this is that if I go through with getting a transplant, some of the anti-rejection medications will put me at higher risk for diabetes. This doesn't take me out of the consideration process, it just means that there's something else that needs close monitoring to ensure optimal health.

Personally, I'm still praying for a miracle that will give me another ten years with these lungs.

In Lock Up Once Again

2010-04-18T19:12:00.000-07:00

Well, I went to Stanford for the Pre-transplant evaluation. The trip did not turn out like I had planned. It was supposed to be four days of testing with me returning home on Friday. I was planning on giving a full run down on the pre-transplant testing process when I returned home. That has been postponed for now.

Things did not go as predicted. The first couple of day went fine. I was feeling pretty good. Not run-a-marathon good. But walk around without gasping good. By Wednesday night I was vomiting. Thursday I was sent to the ER with a fever of 102.4F and a heart rate of 145 bpm.

It was a little intimidating being sent to a hospital that I am unfamiliar with. I am used to going to a hospital where my doctor has pull. He's the type who will meet his patients in the ER and start issuing orders for patient care right away. So not having him there had me a bit anxious. I didn't know how the doctors were going to be.

Since I was in Palo Alto, I was sent to the Stanford ER, not the UC Davis ER. The ER staff was very good and worked hard to diffuse a stressful situation. I was sent to the Peds section of the ER since the peds doctor was the ER dr who was familiar with CF. They had a flat screen TV in the room with movies. In the hall was a cabinet with stuffed animals and colouring books (it was locked of course). I was sent for X-Rays, Ultrasounds, and blood work to find out what was going on. By evening, I had stabilized and was sent to a private room on the Cardiac ward for observation.

I was nervous about being sent to a floor, since quality of care seems to change according to the ward you are on when it comes to being in UC Davis. So I wasn't too sure about Stanford Hospital.

The care on the Cardiac ward was great. Someone came to check on me regularly, and call lights were answered in a timely manner. I was very satisfied with my care on the Cardiac Ward.

Friday evening I was moved to Stanford's CF ward (where I am currently). Yes, Stanford has a CF ward. Davis doesn't even have that. And CFers get offered two massages a week during their stay! Pretty cool. So far I have not been disappointed by the quality of care provided by the staff. If my nurse is unavailable to answer my call an assistant comes in to handle my needs.

I actually have a view from my window. Not just some bare walls and some wires. I can see trees, grass, and sky. From the Cardiac ward I could see the fountains. I have a flat screen TV in the room. The resolution isn't top notch, but it is better than other TVs I have seen during my many hospital stays. Patients are provided with Movies on Demand, internet access, games, and cable all from the TV provided. Pretty nice set up.

RTs don't complain when you ask for manual CPT. And they don't complain about how much time your treatment takes to complete. Treatments only occur during waking hours unless you really need a night treatment. That's more of a doctor decision than an RT one. It is kind of nice being able to sleep through the night though.

Housekeeping asks your permission before coming in to clean. It's not like I'm going to say, "no," I like having clean room, it's just nice having someone ask before invading my privacy.

The staff always knock before entering. It gives a small feeling of control over my environment.

The doctors seem competent. They don't act stuck up. And they definitely don't act like the Dr. House. But they keep that boundary between doctor and patient, which I find frustrating. They don't act arrogant about it, but they have this idea that I should listen to whatever they decide without my own input. So it's a little annoying.

I did insist that the Stanford doctors keep my own doctor in the loop. He knows my record and what's the best course of care for me. If they don't want to truly listen to me, I hope that they listen to him. Else they will end up finding out how much of a problem patient I can be.

Monday, I will be doing a PFT. Hopefully, it'll turn out well and I'll be allowed to go home. While I have been treated quite well here, I would rather be somewhere familiar. Besides, I miss my dog.

What's In An Experiment?

2010-04-08T21:08:00.000-07:00

As a CFer, I get impatient when it takes so long for new drugs to come out. The whole process takes years. And sometimes the drug doesn't even get approval from the FDA. It's a frustrating process, when every day counts.

While writing up a plan for the exercise bike challenge, I thought about what makes a good experiment. Being a scientists, I know that a lot goes into the experimental process. An experiment must be able to be reproduced by another scientist and still have relatively the same results. What else makes a good experiment? I've decided to use the bike challenge as an example.

What is the hypothesis?

A good experiment needs a hypothesis. The hypothesis doesn't need to be correct, it just provides direction. For the bike experiment the hypothesis would be, "Performing aerobic exercise while inhalation of medication will improve lung function more so than performing aerobic exercise or inhaling medication alone."

How will the hypothesis be tested?

Since the idea was presented to me in the form of an exercise bike, that's what I decided to use. Also, in the case of CF females, some coughing attacks are really brutal on the bladder. Sitting allows for more control and fewer "accidents." Pulmonary Function Tests and O2 sats are a good way for measuring lung function. PFTs measure how much air the lungs can take in. O2 sats measure how much of that oxygen the lungs take in is actually going into the bloodstream. Ideally, the measurements would be taken before starting the experiment and every two weeks during the experiment.

I chose Hyper-Sal for the inhaled medication because, again, that is what my doctor recommended. Hyper-Sal is a good choice because it's a saline solution, relatively cheap, and I won't feel guilty if the hypothesis is incorrect (no way am I risking the waste of my Pulmozyme).

What are the controls?

When working with CFers there are several variables to consider: age, sex, lung function, medications, diet, activity level, etc. Since it would be impossible to set controls for every possible variable, I'm listing the two controls that are absolutely needed. One control would do the exercise bike according to the schedule provided, however, they would not be taking any inhaled medications during their rides. Another group would stick to their normal routines. No bike therapy added. All participants would use the same brand and model exercise bikes. They would all use the same brand compressor machine and the same brand nebulizers. All participants would use the schedule provided by the experimenter.

What are the methods used?

Participants would follow a 12 week course provided to them. They would use equipment provided to them. Every two weeks they would check in for PFTs and O2 sats.

Every experiment would have its results and conclusions. Some conclusions include ideas for more testing. Testing different medications or grouping people by lung function would be another way to try this experiment. If the hypothesis was proved incorrect, then explanations as to why are in order. If correct, then testing on how many times daily would provide the most benefit while still being feasible with a person's schedule would be needed. Also, if the hypothesis proved correct experimentation would need to be done to answer why the hypothesis is correct.

Obviously, this isn't by any means a formal presentation of an experiment. I thought it would be a good idea to give some insight on what goes into the planning of an experiment. It gets more complex with new medications.

Bike Challenge

2010-04-02T15:07:00.000-07:00

Life has a funny way of keeping you pretty busy. In March I went back on IVs, had finals, and got the phone call to go to Stanford for Pre-transplant testing. Quite a bit of stuff in such a short amount of time.

I will be in Stanford April 12-16. I'll be bringing my notebook to give you an idea of what goes into the consideration process.

For now though, I thought I'd post about an project I am trying out.

While in the hospital, my doctor had me try using an exercise bike while inhaling my Hyper-Sal. Now there aren't really any scientific studies on combining exercise with breathing treatments, but if the wads I was hacking up are any indication, this is a subject worth investigating.

We know that exercise is good for our lungs. That's why I incorporate it into my daily life. When I'm sick, I take brief walks. When I'm healthy, I hike, bike, and swim. Inhaled medications are also important for maintaining our lungs. What happens when you combine the two together?

I know immediately, I start hacking up wads. But what about long term? so I've decided to try a little experiment. You are welcom to join me on this little test. In twelve weeks I'll be posting the results.

Here, I have outlined my mini experiment.

Equipment:

Exercise Bike

Pulmo-Aide with nebulizer

Hyper-Sal

Methods:

It would be gereat to start this after a doctor appointment so you know your current lung function and O₂ sats.

Do your treatments as you normally would. When you get to Hyper-Sal, hop on the exercise bike and go at a steady pace. The bike and Hyper-Sal should be done twice daily (every 12 hours).

Week 1:

Bike for 5 minutes twice daily while inhaling Hyper-Sal.

Week 2:

Bike for 10 minutes twice daily while inhaling Hyper-Sal.

Week 3:

Bike for 15 minutes twice daily while inhaling Hyper-Sal.

Week 4:

Bike for 20 minutes twice daily while inhaling Hyper-Sal.

Week 5-12:

Bike for 20 minutes twice daily while inhaling Hyper-Sal.

During the 12 weeks, record your lung function and O₂ sats from each doctor visit. Keep the rest of your routine the same.

Part 3: The Ward

2010-02-19T15:39:00.000-08:00

When I was moved to a normal ward, all I wanted to do was sleep. Which was what I did for a couple of hours before my next treatment.

On the ward, I faced a new set of problems. Getting a good nurse was a shot in the dark. Some nurses were great and very responsive. Others, treated me like I was wasting their time. Call light response time was much longer. And sometimes my nurse wasn't even told that I needed her.

Finally got the nose bleeding to calm down. It hadn't stopped, but it wasn't tissues full of blood several times a day. They hooked a humidifier to my oxygen so it wouldn't irritate my nose so much.

I was no longer connected to a bunch of monitors. And I could use the bathroom on my own.

Once I reached the point where I could sit up and talk normally, I decided to try trendelenburg. I ended up coughing so hard that I started gasping. The RT had to up my oxygen. The coughing itself isn't the problem. When I cough up such a large amount, some of it blocks my throat. No air can pass through, so my brain starts to panic. Once all the mucous is out, I can breathe again. By then, I usually have a headache and have seen the flashing lights. It took a few days before I could do trendelenburg without having a problem.

Once I was okay with trendelenburg, my doctor decided to add something new to my therapy. He put in orders for me to ride a stationary bike while inhaling my hypertonic saline. Now if this had been the first time he had brought up the idea, I probably would have looked at him like he was nuts. My doctor had brought the idea up to me a couple of years ago. He had wanted to do an experiment to see if doing a breathing treatment while exercising would increase how deep into the lungs the medication would go. After some discussion, I come to the conclusion that it was a good idea to test. Nothing seemed to come of it though

This wasn't an experiment though. My doctor was just trying to get my crud out of my lungs and get them to strengthen up a bit. My first round on the bike was like my trying trendelenburg. I didn't last five minutes. I was coughing stuff up, gasping for air. The RT had to turn up my oxygen for me. I was so shaky, it took me awhile to be able to continue with my treatment. Like with trendelenburg, it took me a few days to go up to the ten minutes my doctor requested. I actually began to like that part of my treatment.

This was the longest hospital stay I've had in a while. I stayed for two weeks. By the time I got out, I had missed the first week and a half of school. Had one week to prepare for midterms. The best part was my mom brought Mick with her to take me home. He was so happy to see me. He kept licking my face and wouldn't budge from my lap.

Now that I've been home for a while, gotten caught up with schoolwork, in the middle of moving, and have had a follow up appointment with my doctor, I've decided that I like the bike idea and am now searching for a stationary bike for use during my treatments at home. Who knows, maybe enough CFers will give it a try, the CF Foundation will fund a research project to see if it really works. And it's something I don't have to wait for FDA approval to start.

Part 2: The ICU

2010-02-19T15:12:00.000-08:00

Once I got to ICU, the staff didn't waste any time. They switched out my monitors (heart rate, O2, blood pressure, temperature...) for their own. Because I'm allergic to adhesives they had to manually take my temperature every couple of hours. They also had to take my blood pressure manually. My blood pressure naturally runs on the low side. When the machine tried taking it, the alarms would go off.

I can't say I got much sleep in ICU. I had a "private," glass room. It reminded me of the gorilla enclosures at the zoo (everyone walking by feels the need to stare). The reason for no sleep was that my doctor ordered my treatments to occur every two hours. One treatment takes an hour and a half, so sleep wasn't likely. I was awake for 36 hours before my treatments were changed to every four hours.

The way those glass rooms are designed is kind of odd. I could hear all the noise going on in the ICU (not a quiet place to be), but never smelled anything. At one point during my stay, there was an announcement for a Code Red on the floor. Since it didn't state where on the floor, and I didn't see or smell anything, I figured that the fire wasn't in ICU. Turns out someone burnt some popcorn (complete with flames) in the microwave. My Respiratory Therapist was freaking out because he was working so hard to get me breathing comfortably, the last thing he needed was for me to have an asthma attack on top of my breathing problems. From what I was told, the burnt smell permeated through ICU. I never smelled any of it in my little glass room.

A problem that developed while I was in the ICU involved nosebleeds. I had been having nosebleeds at home, but they were light and slightly irritating. My first day in the ICU, I had to keep blowing my nose and the tissues would be full of blood. The RT was nice and acted like it was normal. I was completely freaked out. Only time I've gotten that much blood is in the morning, when it has built up all night. This was several times in one day. The only thing they could suspect was my being on prednisone and then being on oxygen. Was never checked for any CF related sinus issues.

The beds in ICU are pretty cool. The nurse can push a button and the bed will take your weight, without you having to get up. To prevent bedsores, there's something like a massager that slowly moves throughout the bed. And the bed turns into a chair. The nurse will push a button and the bed starts folding, sitting you upright. I was sorry to give up the bed when I was moved to a normal ward.

The staff in ICU was great. Longest I had to wait on a call light was five minutes. They wouldn't allow a call to go through to my room if I was sleeping or doing a treatment. Visitors had to get permission from my nurse to see me (sometimes there are people you just don't want to see when you're sick). They figured out the intervals in which I asked for water or to use the bathroom and came in to help me before I even pressed to call button. When I first arrived, the nurses made sure to remove anything in the room that I was allergic to. They didn't want to risk my having a reaction on top of everything else. And to top it off, they were friendly. The nurses didn't treat me like I was wasting their time. They made a stressful situation a little easier to deal with.

The attending for ICU did not make things less stressful for me. First off, she never introduced herself. She just kept sending in the residents to relay her orders. I don't care how good a doctor a person thinks he/she is, I am not going to follow order from someone who can't even come in for an introduction. I'm not saying that it has to be some long conversation. Just come in and say, "Hi, I'm Dr.________. I'll be handling your care while you are here. If you have any questions or problems, just have the nurse page me." It's short and doesn't even take five minutes. This was the first time in my adult life that an attending did not bother with an introduction.

While the attending did not have time to bother with an introduction, she did have time to talk about me to her residents outside my room (remember I could hear everything through that glass). That's where most of my issues with her came from.

While in ICU, I didn't eat much. I was coughing up some nasty crap, and was blowing tons of blood from my nose. I was sleep deprived, and dietary wasn't sending foods I could eat anyways. These things alone are reason enough to not be hungry. I also have a habit of not eating before a treatment. It's hard to hold food down when you're coughing up a lung. Since my treatments were every two hours, and an hour and a half each, it didn't leave much of a chance for eating. My own doctor didn't make an issue of it. He's been dealing with CFers for so long, he understands this habit. I was being pumped full of fluids through IV, and was drinking plenty.

Apparently, the attending didn't agree with my non-eating status. Instead of talking to me and my explaining why I wasn't eating, she had a chat with her residents outside my room. She told them to tell me that if I would start eating, that they'd have to put in a G-tube. She also told them to tell me that I had no choice in the matter. If I had had the strength, I would have yelled at that doctor. This resulted in me telling my doctor (he checks on his patients each day), who happened to be there with the RT from the CF clinic. I was fairly angry and asked if the attending was aware of a little thing called the "Patient's Bill Of Rights." The RT laughed and said that CFers are the wrong people to make threats like that to.

Another day the attending stood outside my room and told the residents to see if they could get me to eat peanut butter. She completely lost any shred of respect I might have had for her then. I love peanut butter, I miss eating it. However, eating peanut butter is not an option. If the attending had read my chart, she would have seen "peanut butter" in the allergy section.

The attending also told my RT to make me go in trendelenburg. Now I was having trouble breathing sitting up, there was not way I was going in trendelenburg. Since my RT refused to force me, the attending sent a resident to come and try to convince me. I flat out refused.

I decided to pay attention to every order the attending made regarding my health care. It's a good thing because she ordered heparin shots (I bleed easily and was suffering from a bloody nose, heparin would have made it worse) which I had to refuse.

The attending was basically a woman on a power trip. And I'm sure she wasn't used to people beneath her (especially a measly patient) saying "no." Even in my worst state, I wasn't going to let her have the upper hand. I wonder what her patient survival rate it. I have no doubt the attending was happy to have me leave "her" ICU.

I honestly think that doctors should be required to pass a course in bedside manner before renewing their licenses. They would have to be graded by real patients (ones who are constantly in the hospital) to pass.

I left the ICU just in time to ring in 2010.

Trip to The ER

2010-02-19T13:50:00.000-08:00

I know it's been awhile wince my last post. Makes my goal of posting once a week seem futile. My being MIA was not without good reason. The reason which will be detailed out in this serious of three posts.

After Christmas, I got sick. Caught some sort of cold and still haven't figured out from who. Instead of getting better, I just got worse. It got to the point where my mother had to drive me to the ER (I protested the whole way there, between gasps for air).

When we got to the ER a nurse checked my vitals. My pulse was at 132 and O2 sats were 88%. This was at rest. So basically, I didn't have to spend hours in the waiting room waiting for help. I was quickly taken into a room where they put an oxygen mask on me (set it to 4 liters) and gave me three albuterol treatments, back-to-back.

During this time they also did an EKG. Second one I've had in my life, and the second one in three months. The EKG showed that though my heart rate was extremely fast, my heart was still in good condition.

At some point my doctor came in (I had called when I was on the way to the ER). I'm guessing I looked pretty bad because he told the ER doctor to have me sent to ICU.

Once I was somewhat stable (on oxygen and port accessed), I was sent from a private room in the ER to one of those rooms where there are several patients separated by curtains. Then I had to play the waiting game.

At some point while waiting, I needed to use the restroom. I told the nurse. Since my heart rate was so high, the doctor left orders that I wasn't to get out of bed for anything. So I had to use a bedpan. I'm glad my mother was there to help me out because that was an extremely humiliating experience for me. My bladder can hold quite a bit of fluid (over a liter) before I need to go. The bedpan that was brought was apparently too small. So in the end, my sheets needed to be changed, I needed a bath and a clean hospital gown. Eventually, I was moved to a "private" room (it was a glass room in the same area of the ER). It had its own toilet. The nurse had decided it was less stressful to let me use the toilet than the bedpan.

I remained in the ER until about 3am (went in at 2pm). Then I was sent to the ICU.

No updates.

2010-01-02T19:17:00.001-08:00

No updates this week. In hospital.

Doctor Appointment

2009-12-23T16:42:00.000-08:00

On Monday I had an appointment with my doctor. Overall the appointment went quite well. I'm at 94 lbs (my bikini weight!). My lung function went down from 35% to 31% due to an infection caused by a cold. So I'm being given more Levaquin for that. I'm just glad my lung function isn't in the 20s.

I have two ulcers in my nose due to the prednisone. I already do nasal irrigation to keep germs out but to protect the open sores I have to put KY Jelly on them. I had to laugh when the doctor was trying to tell me what to get. He wouldn't just come out and say "KY Jelly". I was just telling me not to use any petroleum based products and that I needed a water based one. Then he said that I could find what I needed in the Women's Hygiene section of the store. I finally smiled and said, "You mean KY Jelly." The guy is new to the CF team (cute but new) and isn't used to how blunt I can be, or the fact that he doesn't need to beat around the bush with me.

I'm also being referred to a Gynecologist since he believes the prednisone has screwed up my cycles (twice a month is brutal) but wants to rule out any potential issues. And he's lowering my dose of prednisone since my mind racing problem is becoming more frequent. Basically, my brain chemistry is very sensitive to hormonal changes and steroids are hormones. If I can't get the mind racing under control through natural means (diet, exercise, routine, getting rid of unnecessary stress) then I'll need a mild sedative to slow my mind down at night so I can sleep.

Still waiting on the referral to the transplant center. These things take awhile to go through. So I'm waiting to start the waiting game.

Finally, the doctor gave me something for the thrush in my mouth. It's an annoying consequence of having to take so many antibiotics. I have to take the antibiotics to fight off the infections caused by having CF. But these antibiotics kill all the good bacteria in my body, resulting in thrush or yeast infections (which are worse than thrush). Usually, I can get rid of the thrush using the potent form of Listerine (28% alcohol and tastes horrible) but this time it didn't work. So the doctor gave me Nystatin. The bottle says "cherry-mint flavor" but it's just gross. I can't taste any cherry or mint. But hey, if this stuff gets my tongue to go from white to pink than taking it will be worth it.

So that was my appointment. I guess most people wouldn't think it had gone very well. In my history of doctor appointments, this was a good one. I'm not sick enough to go to the hospital, and don't need IVs. My doctor listened to my list of complaints (I really did bring in a list). He treated each one as a valid issue and provided answers to the best of his knowledge. Doctors like this are rare and the fact that I have three such doctors on my CF team makes me feel confident in the quality of care I am receiving. I am a very satisfied patient.

A Friendly Visit

2009-12-23T16:22:00.000-08:00

A lot has happened in the last week and a half.

My bio dad flew in from Colorado for a visit. I went and met his brothers and nieces (my uncles and cousins) for the first time (met my bio dad in April). The visit was nice. Apparently, I have pretty cool relatives. I'm still the odd ball though. I chose to attend UC Davis and they are all Sac State people. Guess I'll always be the weird one.

I guess I have a lot of qualities my paternal grandmother had. I find it weird because growing up I was always told that I look like my grandmother (my mother's mother) and act like my grandfather (my mother's father). I'm not upset by this comparison. I've actually always been proud of it. My grandmother was and still is a very beautiful woman. And my grandfather is a very strong will and self educated man. Being compared to these two meant that I possess the qualities that have made them so successful in life.

Now, I'm being told that I also have the qualities of a third person in me. And while I will never get to meet this person, I can tell by how everyone speaks of her that she was a creative person who was respected and loved.

My bio dad had to fly back to Colorado. I sent with him the Christmas gifts I had made for everyone. I hand painted a set of snowman ornaments. I chose the ornaments because I can do plenty of detailed work and they will still fit in a suitcase without too much trouble. I'm told that there was some negotiating over who was getting which snowman. I am hoping that it's a good thing.

CFer Christmas List

2009-12-11T19:15:00.000-08:00

Christmas is around the corner and people are out getting gifts for everyone on their lists. Children have written and rewritten their letters to Santa asking for the latest toys or coolest clothes. The ladies are hoping for that pretty necklace that they see in the jewelry store window or a ring from that special someone. And the guys are hoping for some power tools or that large screen T.V. Everywhere you go, the sound of Christmas music is permeating through the air.

We CFers are no different when it comes to Christmas. We have our Christmas list. The only difference is the what and the why we are asking for it. And for the most part we will never tell you what is really on our list.

So what is on a CFer's Christmas list?

1. A New Set Of Lungs.

I guess that's pretty obvious. CF attacks the whole body in some way, but it seems to wage war on the lungs. The idea of participating in physical activities without "hacking up a lung" is pure fantasy for most of us.

2. More Time.

Time is something that no one is guaranteed. And as CFers, we are more painfully aware of that fact and of the fact that no matter how much time we do get, it will always be less than what "we could have had."

3. A Cure.

This is actually at the top of the list. Those of use who believe in a higher entity pray for it each night. And those of us who don't believe, still continue to hope. It is that hope that keeps us going day after day. Pushing against the odds, because we want to make it to that day when CF is no longer a threat. When the disease can no longer outsmart science. And that is a day we will be celebrating.

I am aware that this list is out of reach. A fantasy that has yet to become truth. But that doesn't mean you can't get the CFer in your life something he'd appreciate.

So what do you get a CF for Christmas? After wracking my brain, and considering personal experience, I've compiled this list.

1. Hand held Gaming Console.

The Nintendo DSi or PSP are great gifts for a CFer. We spend a lot of time at doctor's appointments, and in the hospital. Games help the time pass by more quickly. And helps us keep our minds off of CF for the time being. An added bonus: Include a game or two to gets things started.

2. DVDs

The more the better. Again, being sick sucks. So anything that keeps our minds off of IVs, CPT is great. Even when not in the hospital, and we're have a down day (up all night coughing, or just feeling "ick") DVDs are a great way to pass the time. I have spent many sick days just doing a marathon of movies I've been collecting just for those moments. Comedies are a plus. They brighten the day up a bit and laughter helps get some of that gunk out.

3. Notebook/Laptop.

It's one large entertainment package. Your CFer can play video games, watch movies, browse the internet, and do homework (yeah right) all on one piece of equipment. Mine has been a lifesaver. Hospital TV is extremely boring, and having all my games and movies right there has made many hospital stays a little more bearable.

4. Kindle Wireless Reading Device (6" Display, Global Wireless, Latest Generation)

I personally think this little device is neat. Your CFer can store all his favorite books on here and read them. The device is portable so it's great for doctor appointments and hospital stays. I've been hinting to my mother about it since she keeps complaining about all the books I have her bring me when I'm in the hospital (they can get heavy). This little device, could be shoved into a purse or overnight bag and your CFer can have all the reading material he needs.

5. Apple iPod touch 32 GB (3rd Generation) NEWEST MODEL

This is also a handy device. Get one that you can play games on and watch movies as well as listen to music. It's great for hospital stays (easy to stash away), and appointments.

6. Books.

Reading allows for a great escape when your CFer is having one of those "ick" days. Activity books keep the mind busy as well. I'm 28 and I still enjoy a good coloring book.

7. Cool PJs.

There's not a nice way to say it. Hospital gowns are ugly. No one looks good in them. And they are drafty in areas where no draft should be. So get your CFer a comfortable and cool set of pjs. Makes him feel a little more human in a place that tends to forget.

8. Board Games.

Again these help fight against boredom. Find out what games he likes and get him a couple. Just make sure to stick around to play a couple of rounds with him.

9. Art Project/Model Set.

Great for those rainy days when your CFer is stuck inside. Or those boring hospital stays. Make sure to get all the necessary equipment for your CFer to finish that one project. It sucks, getting a start on something and really getting into it then having to quit because a particular tool was missing or you ran out of paint...

10. Workout Equipment.

Keeping our lungs healthy is important. Unfortunately, after having to spend funds on medications and other things not covered by insurance, spending money on a workout routine just doesn't make it on the priority list. Of course this means different things for different CFers:

If your CFer likes to ride his bike a lot, get him some warm biking gloves for those chilly days. A pair of bike shoes would be nice or warm jacket. A new helmet to make sure he comes home safely. Or a gift certificate for some much needed bike maintainence.

If your CFer likes to lift weights, get him some dumbbells or a home gym. Or get him a gym membership with lessons on proper lifting techniques.

If your CFer is a jogger, get him some new running shoes, a pedometer, or a new running outfit.

If your CFer is a swimmer, get him an absorbent towel. A gym membership to a gym with an indoor heated pool would be a plus (something I am totally hinting for). This would allow him to continue swimming even when the weather is less than appropriate.

I hope this list gives you an idea for what to give the CFer in your life this Christmas.

Bikini Ready By January

2009-11-29T14:15:00.000-08:00

I hope everyone had a great Thanksgiving. I know I did. I spent the day with my family. We ate, joked, cooked, and ate some more. Mick decided to take a leap into the pond. By the end of the day he was a muddy mess. He was pretty proud of himself though.

I had awoken from my food induced coma on Friday to get a start on this post. I had been mulling over topics in my head. I didn't want to do an "I'm Thankful" post. Not because I have nothing to be thankful for (I have tons of reasons to be thankful), but because I just wanted to write something different (yes, I have a rebellious side). I did have this post all planned out and written, but the internet gods would not allow me access till today.

I look forward to the holiday season. All the lights, decorations, events, and food. I get pretty excited. For me, the holidays start with Halloween. No, I do not go and get all my Christmas shopping done in October (though the day after Halloween is the best time to find a gift for my sister). I mean that Halloween marks the beginning of my holiday season.

I spend my time planning and making my costume. I put a lot of work and detail into this. On Halloween, I don on my new costume, put on make-up (one of the rare times I wear the stuff) and head out to celebrate. Once the night is over, I get excited thinking about Thanksgiving.

Thanksgiving marks the official start of the holiday season. My main reason for getting excited probably makes most people (especially females) cringe. I'm not talking about the gifts, shopping, or dressing up, or even the events. I am talking about the food.

The time from Thanksgiving till New Year's is an endless buffet of food. During this time period there is food everywhere. Visiting a friend's house results in munching on cookies, drinking hot cocoa, sharing a meat tray, or enjoying homemade fudge. It's great. It's also the only time period where I don't have some random lady telling me the honey roasted cashew I'm eating will go straight to my hips (my response to that is generally a wide eyed, "You promise?").

To some, my love affair with food would seem like an unhealthy obsession. In reality, it's vital to my well being. For me, maintaining a healthy weight is a full time job. My body burns calories almost faster than I can consume them. It's pretty hard work. So someone like me looks forward to all that holiday food. It helps me get my weight back to my healthy range.

I don't really have much of a sweet tooth (something I did not inherit from my dad). I'm more of a protein junkie, so meat and cheese platters are my friends. I do have a weakness for chocolate, so chocolate cake, cookies, brownies and hot cocoa rarely get a refusal from me. And I love veggies with dip. Everything just tastes better smothered in cheese. To top things off, the holiday season means eggnog. That wonderful drink contains more calories and tastes better than any of those high calorie shakes sold in stores.

I plan on enjoying this holiday buffet. Maybe it'll help me regain all that weight I had lost during my hospitalization. Hopefully by New Year's I'll have that bikini ready body. Anyone care to join me on the beach? In January?

You Can't Take a Vacation From Cystic Fibrosis

2009-11-20T16:41:00.000-08:00

The trip to Tahoe went quite well. Froze my non existent rear off (car therastat read ICEY), soaked in a hotspring, did some shopping, and came up with the idea for this post.

While packing for my trip, I went through the normal frustration of what I should take, what I should leave behind, and how am I going to fit it all in my bag. I'm not talking about clothes, makeup, shoes, or any of that other girly stuff. Those who know me know that I don't wear makeup (too much time spent in the morning doing treatments, not enough time to apply makeup), t-shirt and jeans are my main attire, and I strictly wear my Etnies (though for Tahoe I did pack my snow boots). So what am I talking about then? I'm talking about all my CF supplies.

Just because I go on vacation doesn't mean CF does. So all the treatments I do at home, I still have to do while I'm out. Skipping a treatment is not an option.

So there I was with all my meds spread out on my bed. I had devied them into two piles 1) The necessary meds and 2) The just in case meds.

The necessary meds are the medications that I cannot skip. They may be a hassle and some take a huge chunk out of my day, but they keep me out of the hospital. These medications consist of my enzymes, multiple vitamins, prednisone, singulair, prevacid, voraconozole, zithromax, fosamax, advair, spiriva, pulmozyme, albuterol, and hypertonic saline.

Once I figure out what is necessary, I have to calculate how much I'm going to need for the trip. I don't have room to pack all my pill bottles and boxes of vials. The pills are pretty easy. Most, I only take once or twice a day and I have a pill holder that holds enough pills for once week. So I sort all the pills out by day and put them in their spot of the pill box. Then it's onto the inhaled medications.

Five of my meds are for inhalation. Some I only take once a day. Others, I take three times a day. Since I was going to be gone for at least seven days, that's a lot of vials (three of them come in liquid vials) to be packing. That turns out to be 42 vials plus I threw in a couple of extra days' worth just in case something comes up and I didn't get home in the time allotted. And because these medications are in liquid form and I have to inhale them, I have to pack a special compressor and the necessary nebulizers (there are three of them) that will turn the liquid into a mist that I can inhale.

Luckily, I have a portable compressor that takes up less room in my bag than the compressor I used around the house. The portable also has a battery that lasts for about two inhaled medications. I can't do all my meds in a row with the portable because the motor over heats and will shut off automatically. So I have to take a break between meds, get something to drink, brush my teeth, anything until the motor cools off. The portable is fine for on the go, but a hassle for daily use.

The two other inhaled medications come in a tablet that gets crushed in a device and then the powder is inhaled. So the devices have to be packed and so do the tablets.

Now it's on to the Just in Case pile. The meds in that pile consist of a prescription pain killers for uncontrollable pain, benadryl for allergic reactions, advil for controllable pain, extra inhaler, TOBI (inhaled tobramycin) for lung infections, and hydrocortisone cream for allergic reactions. Actually, that's a pretty small pile, except for the TOBI which comes in a large box and requires another nebulizer. So I pack a little of each. I wasn't in need of them at the time and figured I wouldn't need them for the whole trip.

Since I had decided which meds to pack and how much, now I needed to pack them in a way that they wouldn't lose potency. TOBI and Pulmozyme require refridgeration. So I have to store them in one of those artic lunchbags with a couple of icepacks before putting them into my bag.

Now all my my medications were packed as well as their delivery devices. But I wasn't done. I also had to bring something that would allow me to get all that mucous out of my lungs. I couldn't let it build up for seven days. At home I use a device called the VEST. It's this vest that you put on and it shakes you, in turn shaking the mucous out of the lungs. I couldn't very well pack the VEST. It weighs about 40 lbs. And while there is a portable version available, I haven't been able to convince my insurance to pay for it and I do not have access to the funds needed for such an item. Luckily, for this trip the decision was an easy one. My mother was coming along and she knows how to do manual CPT (clapping the hands on the chest to loosen up mucous). So the VEST got to stay at home.

I managed to fit all this stuff into one large backpack. My clothes and hygiene items went into a second bag. Threw on my snow boots and a heavy jacket and I was ready for Tahoe.

Good News

2009-11-07T21:06:00.000-08:00

Went MIA for a bit. Had plans to post weekly updates, but with Halloween, a visit to my mother's, and preparing for a trip to Tahoe, posting just didn't happen.

Saw the doctor on Friday. My lung function is up to 35%, which is pretty darn good considering I've been below 20% for over a year. He said that for some reason my lungs are trying to recover though he can't explain it. I asked about stopping the prednisone since I was doing better and was sick of starving all the time. He didn't want me to stop taking it just yet, but did agree to lower the dose. So I get to work down to 10mg/day and stay there till I stay healthy for at least three months. Also have to stay on the anti-fungal till after I stop taking the prednisone. For the next three months I get to continue seeing the swirling lights.

Even though I am doing much better, the doctor still wants me to go see the transplant team in Stanford. Have yet to hear when I'm supposed to go. I think it's mostly just to get everything planned out for when my lungs decide to stop improving. I'm crossing my fingers and hoping for another 10 years with these suckers though.

The doctor did give me permission to go back to my normal activities. So it's back to biking and walking my dog for me. Can't swim anymore on account of the dropping temps and I hate swimming in cold weather. I need to get access to an indoor, heated pool. Also started a new workout with my sister. She got a video routine called "Turbo Jam." Let's just say five minutes into the workout, I started coughing up plugs. And my legs were killing me for the following two days.

It was a reality check on how much muscle I had lost over the last month of being sick. It really sucked. Basically, it means that I'm back where I started earlier this year. I have to increase my protein intake and really work on getting those muscles back.

Over all though, it's been a good week. Makes it easier to have a positive outlook for next week. Next time you hear from me, I'll have returned from Tahoe.

Greed Knows No Country

2009-10-28T14:10:00.000-07:00

I have found that instead of searching the internet for new information on Cystic Fibrosis, using Google Alerts really simplifies the process. It brings all the latest news straight to my inbox and I can sift through all the articles there. It's a great setup. At the end of the day I just log in and read up on anything interesting. So Monday evening I sat down to go through all the links that Google Alerts had sent and one caught my eye. It was titled "Cruel mother and 'Britain's sickest child." So I opened up the link which I have listed for you. http://www.thisiswesternmorningnews.co.uk/news/Cruel-mother-healthy-son-sickest-child-Britain/article-1449160-detail/article.html

This article just irked me. I mean this mother scammed people into believing her child was sick and got them to give her money and gifts to "help him out." Her child spent countless time in the hospital when he could have been outside enjoying being a kid. I want to ask "what kind of person would do this?" but unfortunately I already know the answer.

It's people who don't care about how their actions affect others. It's people who would rather get easy money than put in a hard day's work for a wage. It's people who are greedy and can never seem to get enough of anything in life.

While this occured in Britain, the US has its share of scammers. These people fraud state Medicaid, Social Security, Disability, and agencies designed to help those who are truly in need. These people manage to scam tens if not hundreds of thousands of dollars from these agencies. And what's frustrating is that most do manage to get away with it. Those who are caught don't get punished enough by my book.

And because of these scammers, those of us who really do need the help have to practically perform a circus act to get accepted into these programs. We have paperwork to fill out. We have to submit paperwork filled out by our doctors. Then we have to see an outside doctor and submit that paperwork just to prove that we really are sick. Crap I spend so much time trying to pretend to the world that I'm healthy and now I'm expected to prove that I'm sick? It gets frustrating.

And after all the hurdles have been jumped over or hopped through, then comes the waiting period. It can take up to six months before your case is approved or denied.

This entire circus act is just so we can get the help that we actually need. And you have people out there pretending to be sick because they think they can get an easy buck. Guess I've been pretending the wrong way this whole time.

Freedom

2009-10-25T20:22:00.000-07:00

I finally finished my last dose of IV meds yesterday. I was so happy. Once the medicine was done, I took out my needle and hopped in the shower. Then I went up to my family's ranch to celebrate.

Basically, doing home IVs is exhausting. I have to set up and hang the meds every eight hours. I usually set alarms on my phone for each time so that I don't lose track. If I want, a home health nurse can be sent out. But that's usually only for an hour a couple of times a week. A nurse that's stays and does all the meds would be a private nurse and I'd have to pay out of pocket for that. Not something I can afford.

Staying home and doing my meds on my own allows me to get more sleep than I would in the hospital. In the hospital, I get awaken every 4 hours for vitals, treatments, lab draws, or because my blood pressure is low (which is normal for me).

Also, the food is so much better at home. I never understood it. I'm supposed to gain weight, but at the hospital they serve such disgusting food that you have to be starving before you eat it. And they never send stuff I can eat. I'm on a high fat/high calorie/high protein diet with no caffeine. So they'll send coffee with breakfast, fruit for lunch, and grilled chicken for dinner. All with low fat milk. I honestly don't think my chart is looked at as much as people claim it is.

So at home I get to chow down on Mexican food and Italian food (the two cuisines that rule). I get all the whole milk I want. And no coffee for breakfast. Makes my life a lot easier.

And at home, I get to spend time with my dog. When I'm doing my meds, he curls up and puts his head in my lap. When I take a nap, he sleeps right by my bed. If I start coughing he'll run over to make sure I'm okay. Basically, he's great for me. He doesn't ask for anything more than having his belly rubbed and a bone every once in a while. But he'll cuddle with me, go for walks, comes running when I call. I really should have gotten a dog before I dated all those flops :o)

Now I'm free. At least from the IV part anyways. I still have three meds I'm taking in pill form. Once causes me to see twirling lights and I'm not allowed to drive at night while taking it. Another makes me constantly hungry. I'll eat and eat till my stomach feels like it will pop and I'm still hungry. It's quite annoying. The last one makes me thirsty. So I am hungry, thirsty, and seeing twirling lights all the time. Kind of a funny mix.

Home Again

2009-10-14T15:08:00.001-07:00

Well, I finally got to come home. Doctor says the tear in my lungs seems to have sealed up. I don't have that bubble wrap feeling under my skin anymore. And I can take more than five steps without gasping for air.

I am on a bunch of meds for now though. Taking an antifungal for a fungus infection in my lungs, taking prednisone to reduce inflammation caused by the fungus. Taking Bactrim for a staph infection also in my lungs. And taking an IV med (merripenem) for a bacterial infection that is also in my lungs. So I got hit really hard this time.

It's been stormy and rainy since I got home, so that means that I have to follow my doctor's orders to stay home and rest for three days. I think he planned this. He was actually considering letting me go last Friday but he said he knew that the moment I was released I was going to slow down. So he kept me an extra three days just to be safe.

My doctor is actually a pretty cool guy. He knows his patients habits and arranges our medications accordingly. He also explains everything and will even go into the science behind it. At the hospital, he'll come and check you out, let you know what your test results are, and if he's ordered more tests. All this while casually sitting in a chair like he's just visiting. And to top it off, he listens. He doesn't pretend to have all the answers. If I tell him a new symptom that baffles him he makes a point to get to the bottom of it. And he will tell you if he doesn't know. If more doctors were like him, patients would be way more satisfied with their care.

So my doctor sent me home with a bunch of meds and some tough stuff to consider. With CF you usually end up hitting a point where no matter how much work you do it's still not enough and that's when the word "transplant" is brought up. Unfortunately, I guess I'm at that point. I've been opperating at about 20% lung function for a year and this tear may be the first of many. I knew that at some point I would have to consider a transplant, but I had hoped I'd be closer to 40 before that. I also hoped that medicine would advance enough so that I could just grow a new set of lungs in a lab instead of waiting for a donor. But it looks like I might not get to.

I'm not debating whether or not to get one. I always knew that if the time came I would go for it. I mean if it's a success, I get to do things that I can only dream of right now. Shoot as soon as I get the okay, I'm going SCUBA diving. What's hard to swallow is the price tag and how much of your life you have to put on hold until then. In 2008 a lung transplant cost over $600,000. That includes doctor appointments, rehab, surgery, and anti-rejection drugs. That does not include room and board and transportation till you receive the okay to go back to your normal life.

For me the nearest lung transplant center is Stanford. So that would mean after the transplant, I would have to live near the center for at least four months. And because you only get a 4-6 hour window when an organ becomes available, I would have to figure out how to get there in a moments notice if I choose to stay in my hometown pre-transplant. So my life would literally be put on hold.

Another thing is that a transplant means no kids. I always figured that some day I'd meet the right guy and start a family. If I go through with the transplant, that nixes out having children. Anti-rejection drugs are too potent and dangerous for a child. I know that there's adoption or surrogacy, but so far every guy I've known has been dead set against those options.

Seriously, though. It's the cost that's holding me back. Insurance may pay a portion but not the whole thing. Which means I have to find a way to raise the rest, while trying to stay healthy enough for surgery, and finish school.

I also find this kind of ironic. For a while I had figured that once I was done with school and had a real job, I would start putting money aside to start a foundation. I wanted it to be able to provide funding to CF patients in need of transplants. Basically, the foundation would cover whatever the insurance didn't. I figured that with the stress of finances out of the way a person could focus on just the surgery. Because with CF, stress can make things worse. So if you're stressed out about paying for a transplant, staying healthy long enough for the transplant, and the transplant itself, it can really way you down. I had been working on this idea for a couple of years, I just never expected this to all happen.

Anyways, Life is full of adventures and it looks like I might be headed on another one. We'll see how this goes.

In Lock Up Once Again

2009-10-06T20:22:00.000-07:00

Since my last post, I was found not to have the H1N1 virus. I was released on the 24 and was pretty happy to be going home. Just had some asthma issues but I figured that I could handle it. I spent three days at home feeling good and healthy. Was a little tired, but otherwise was feeling pretty good.

By Monday though I was having trouble breathing. I figured that I was just a little out of shape from the flu and it was nothing to worry about. By Friday, I was gasping for air when I would brush my teeth. I called and went in to see the doctor and ended up being sent back to the hospital. Turns out that I had managed to get a small tear in one of my lungs, causing air to leak out. This would explain the difficulty breathing and tight chestedness. X-rays didn't show wear the tear was located but they did show air bubbles in my neck. Can actually feel them when I press the sides of my neck. Kind of like pressing on bubble wrap. A little freaky.

So for the past few days I've been going through blood tests, ultrasound on my legs, X-rays... Just to make sure that I don't have any other problems going on. Good thing is I don't have any clots in my body, which I could have told the doctors that since I had none of the classic symptoms of clots (swelling in legs, pain...). My white blood cell count was pretty high though. When I had the flu it was only at 5 now it's at 20000. That means I'm trying to fight off some sort of infection. And I lost even more weight. So since the flu, I have lost over 10 pounds. It took me three months just to get to my goal weight. So this is a serious setback.

I'm back on IVs for now. The tear seems to be healing since I can walk short distances again without gasping for air. I can brush my teeth without feeling like I'm going to pass out. And the air in my neck is slowly going away. My oxygen levels are going up slowly (currently at 94%). And I have managed to gain back a pound. So I am improving. It's just a slow and frustrating process.

Unfortunately, with this hospitalization I have missed too much class to catch up. So I had to file a Planned Educational Leave Petition for the quarter. Means I won't be getting my degree till March 2010 now. Sort of a let down, but my health is more important. Going to have to find ways to keep my mind busy till I can go back to school in January. I only have two classes left, so I feel a little frustrated. My goal is so close, yet so far away at the same time.

This hospital stay had a stressful start. First I get sent here for not being able to breathe, and then I felt like I was dealing with nurses who just had no clue. I had a nurse try to access my port, turns out it was her first time and she missed. Twice. You have to realize, a port is an easy stick. Just have to get the needle in this rubber thing that is under my skin. Much easier than trying to find a vein. In the end they had to have an Action Nurse (someone who specializes in IVs) come up and access my port. She was a nurse I used to know in Peds. She did one stick and was done. Pretty simple.

The port issue wasn't the only stressful thing I dealt with. The hospitalist (doctor assigned by the hospital) kept treating me like a child and she wasn't telling me what was going on. And she kept changing my medications without even notifying me. She even ordered finger sticks before and after I ate. And she ordered heperin shots. I finally just had to start refusing things, just so she would contact my real doctor.

The whole time I was having a hard time breathing and I was thinking that this was stress I should not be having to deal with. Finally got to a point where my mother started staying the night with me so that my wishes would be respected.

Things have gotten better since my own doctor stepped. The finger sticks stopped, and he gives me answers. Even if it's a "we're still trying to find out what's wrong" at least he keeps me in the loop. He doesn't want me going home till I show more improvement. I guess he's making sure not to have a repeat of sending me home and me having to return a week later.

Throughout all this I am surprised that they don't have some sort of note in my chart saying that I'm a noncompliant patient. I had to lecture an instructor on the importance of asking a patient for permission to have a student do a procedure, before letting the student do it in the first place. I was pretty pissed at her and may have come across rudely. The doctor had ordered that I receive my flu shot and pneumonia vaccine. Not really a big deal, but for some reason it was decided to let a student give me the shots and I wasn't consulted. The student's shots really hurt and then the instructor was telling the student that she should be present for another procedure that I was going to have. All this right in front of me without asking if I was okay with it, so I told the instructor that she needs to ask the patient first. She looked a little shocked that I would say such a thing but at least she didn't try arguing with me.

Don't get me wrong, not everyone here is incompetent or unfeeling. I have nurses who are on top of their game. One even brought me information on a new drug that the hospitalist had decided to put me on without even consulting me. When I complained to the nurse, she brought me info on the drug to read, so I could make my own decision on it.

I figure this is a good time to give a little warning to my readers. Some of my articls will be planned out. But times like this, I will put the article I've been working on aside to give you a taste of what is going on right now. Given time, I might actually be able to include some photos so you can have a better view of what it is like.

Four Walls and A Door

2009-09-23T19:53:00.000-07:00

I am writing this from a hospital room. For once in my life, I'm not here for issues with Cystic Fibrosis. I'm here because of a virus. I went to clinic on Monday because I had flu-like symptoms. I kept running fevers, my nose was stuffed up, my muscles ached, my throat hurt. I felt like crap all over. I wasn't expecting to be sent here. I figured I'd go in to the doctor's and get some Tami-Flu and come back home. But the doctors didn't want to take the risk so they sent me over to the hospital.

Sort of sucked because I didn't bring anything with me. So I was bored for a couple of days. My mother brought my notebook to me today so now I'm back to my old habits.

I understand why I was sent to the hospital. The flu is no laughing matter and when you have CF it's cause for extra worry. Flu for CFers is dangerous. It can turn to pneumonia pretty quickly or it can weaken the body so much that the bugs that colonize our lungs will get out of control. The weakened state of our bodies can make it impossible to fight and the end result is not good.

So I'm here in the hospital, hooked up to an IV getting plenty of meds. I'm also under strict isolation. That means that when anyone wants to come in here they have to put on a special gown, mask, and gloves. I'm not allowed to leave this room. This is just a precaution since they don't know what virus I caught. They sent plenty of samples to the lab, now it's just the waiting game to find out. It's also because of the H1N1 virus. If I have that, well we don't want that being spread around. Definitely would not be a good thing.

Now I'm not writing this for people to feel bad for me. So far this bug is getting it's butt kicked. I stopped running fevers. I'm getting use of my nose back. My asthma is acting up, but that can be easily taken care of. And my CF is still behaving.

I am writing this, to give you a brief look at the hospital experience.

It all started when my sister got sick. We started taking precautions so I wouldn't get sick. We were spraying lysol all over the place. I wouldn't touch any dish she touched. My poor dog kept getting baths because he wouldn't stay away from her. My brother-in-law was the next one hit with the bug. By Saturday morning I was full blown sick. I didn't want to go to Urgent Care and deal with a doctor who had no idea about how to deal with a CF patient. And besides my sister and brother-in-law had gone and they received two different diagnosis. One was told it was a simple cold and the other was told that it was bronchitis. No way was I going to deal with people who didn't think that high fevers were cause for concern.

So I waited till Monday and went to the CF clinic and saw my own doctor. Of course that landed me in the hospital. One thing about being sent to the hospital from the clinic is that you're a priority. The bad thing is that if there isn't a room, you still have to wait. I went in to clinic at 1:30pm and a room wasn't ready until after 6pm. And the floor that the room is on deals with bone issues. So basically they don't have experience with CF patients.

The nurse who was assigned to me was a nightmare. He thought that he knew what was best and actually tried to argue with me. First he said that he needed to draw some blood because I was running a fever. I tried explaining that they took blood at the clinic, but he said it was protocol. He then refused to take it from my port saying that it would be "port blood" not sure how that would be any different since it's all my blood, regardless of location. He also tried to tell me that he has to take the blood from two different sites. So that started the argument of how my veins are not supposed to be accessed because of all the damage they gone through. He kept insisting so I told him he had one stick. Well, I have to say that that was a mistake. He put the tornicet on before setting up, so my hand started tingling. Then he tried to put the needle in without swabbing my arm first. And when I called him on it, he tried to argue with me saying that he did swab my arm. Then he finally sticks me. He missed the vein and actually tried to dig in my arm for it. After that I wouldn't let him try again. The nurse left the room.

When he was gone, I called the CF nurse's voicemail and left a message about what was going on. The male nurse came in with some other nurse just as I was finishing my message. I guess the nurse he brought in is good with dealing with problem patients, but they both left the room when they heard what I was saying on the phone.

About ten minutes later a doctor came in to talk to me. And the nurse stood in the doorway. I guess he was hoping to intimidate or hoping to listen to the doctor tell me I was wrong. Well that didn't happen. I told the doctor what was going on and the doctor agreed with me. He told the nurse that taking blood from my port was fine and not to try sticking me. To top it off, he gave me his number in case I had any more "questions". The nurse left and didn't come back for a couple of hours afterwards.

I haven't had that nurse since and I'm not complaining. I don't know what was said about me, but the rest of the nursing staff has been super nice to me. They answer my calls right away and bring me what I need quickly. My mother who is also a nurse says that when a patient constantly complains a note is made on the chart and that patient gets better treatment. That's because their afraid of a law suit and the vocal patients are the ones who are most likely to file one.

So if you ever find yourself in the hospital, be a vocal patient. Don't let hospital staff intimidate you into letting them do something that you aren't comfortable with. Now if only there was a way to get the hospital to serve better tasting food.

I do know that a lot of the issues when I come into the hospital is that nurses aren't used to dealing with CF patients. We don't have our own ward so we get scattered throughout the hospital. Basically anywhere that there's a room available. It sucks because I feel like everytime I go into the hospital I'm going to have to instruct the nurses on how my care is supposed to go. I do with that we had our own ward. Nurses would know how to deal with CF patients and wouldn't be so pushy. It's just easier when you deal with people who know about your condition and how to care for it. And it's much less stressful on the patient.

I know that UC Davis will never open a CF ward unless someone paid them to do it. And that won't be happening anytime soon. People are more likely to donate to Cancer or AIDS improvements than to CF. CF is still relatively unknown to people. Cancer is known by everyone because everybody knows someone who is affected by it. AIDS gets attention from celebrities and it received a lot of negative attention during the 80's. All that attention has helped push research in those fields to where it is now.

The Monster Within

2009-09-07T16:35:00.000-07:00

I was born July 13, 1981. I came a month later than scheduled. Weighed 7 lbs 11 oz. I was a petite baby for my family. Like most parents, my mother was concerned about whether or not I had the correct number of fingers and toes. I had deep black eyes that would change to a chocolate brown in the following months. And I would eventually have a head full of brown curls. My mother described me as a cherub baby. I was named Solana, the Spanish word for sunshine.

Little did my family know, I was battling a monster. A monster that was inside me. A monster that I would be battling for the rest of my life.

My mother was a new parent. Since she had no comparison, it took her a while to realize that something was wrong with me. Though, I must say, she is one of the main reasons I am still alive today.

According to my mother, I was constantly starving. She could not supply me with enough milk to keep me satisfied. She probably felt pretty helpless, being awake all night listening to my cries of hunger. When I was about two or three months old, my mother went against conventional standards of the time. She started giving me formula and rice cereal at a very young age. She would make the formula, add the rice cereal to thicken it up. Then she would have to make a larger hole in the nipple so I could suck it out. According to my mother, I really liked the concoction she made me. At the time, this was considered taboo to start a child on formula and cereal at so young an age. My mother didn't know it then, but she had just taken the first of many steps necessary for my survival.

See, the main underlying problem in Cystic Fibrosis patients is that our bodies don't hang on to salt like they should. So a Cystic Fibrosis patient needs to consume a high level of salt to replace what is constantly lost. Breast milk supplies little to no salt to infants, whereas, formula does supply salt. So by switching me to formula, my mother had unknowingly ensured that I would receive some of the salt I was losing.

Because I kept getting sick, my mother became what most doctors consider an overly paranoid parent. The type of parent that brings her children in every time there's a sniffle or a sneeze. My mother knew something was wrong with me, but she just could not figure out what. She constantly took me to the doctor. It wasn't for a sniffle or a sneeze. She would take me in because my cold would turn into pneumonia or my food seemed to pass right through me. But the doctor kept sending me back home. He would tell my mother that children get sick, that my GI system wasn't fully developed yet, or that she wasn't feeding me the proper foods. I would guess that it was a hard time for my mother, knowing that something was wrong with her child, yet feeling helpless as to where to go for help.

Finally, when I was just over three years old, my body could no longer keep up the fight on its own. I had gotten sick again. I was extremely dehydrated, hallucinating, had broken out in a rash, had cradle cap (a sign of malnutrition). My mother too me to the doctor once again and once again he chose to send me home, but this time he threatened to turn my mother in for child negligence. Outside the doctor's office my body went into failure. I was rushed to the nearest emergency room which was Ridout Memorial Hospital (which is now part of the Fremont-Ridout Health Group).

The doctor who sent me home was at the hospital. He told my mother, "You just killed your daughter." Now that is the last thing a parent needs to hear during a crisis like that. My mother was already devastated, fearful, and feeling helpless at that time. Guilt was not needed to be added to the list. When it was found out what had made me so sick, that doctor was properly disciplined.

I was in such bad shape at the time that the hospital staff could not find a vein that would take an IV. They had to do what is called a "cut down" in my ankle. A "cut down" is when they cut into the skin to find a vein that is hiding. I still have a scar on my right ankle from it. I was in renal failure by then and was a very critical case.

When I had stabilized enough for transportation, I was airlifted to the UC Davis Medical Center in Sacramento, California. I have no memory of that helicopter ride, but I know that the crew (doctor, nurse, and respiratory therapist) worked very hard to keep me alive during that flight.
I was in a coma for about a week. Once I had been stabilized and awakened, doctors decided to find out what had made me so sick. They had several theories ranging from vitamin B deficiency to being allergic to sunlight. My family history was looked into for clues as to what was wrong with me. Lab tests were ordered to test each theory. I became a human pin cushion. The tests continued to come back negative, and the doctors were forced to consider other possibilities.

Finally, an intern suspected Cystic Fibrosis. She actually came in to ICU after hours to sit down and speak with my mother. She was the first medical professional to genuinely listen to my mother's concerns about my health. Since Cystic Fibrosis is genetic and there was no known family history of the disease, it wasn't originally tested for. But to be thorough, Cystic Fibrosis was added to the list of conditions to test for.

Testing for Cystic Fibrosis didn't require me to become a human pin cushion again. All that was needed was a sweat test (also known as a sodium chloride test). This type of test entailed my arms being wrapped and electrodes and sensors being placed on my skin. My arm was made to sweat and the sodium chloride levels were measured. I had a higher than norm level of sodium chloride in my sweat, meaning I had tested positive for Cystic Fibrosis.

In CF patients, cells are unable to properly bring chloride in. This extra chloride is expelled from the body by combining it with sodium and releasing it through sweat. This causes the sweat to to be extra salty.

My sweat is so salty that I actually have a thin layer of powdery salt on my skin whenever it's hot out. I'm literally a walking salt lick for the animals on the family ranch.

Chloride is actually needed for proper cellular function. When chloride is prevented from going into the cell, organs begin to have problems. Thick, sticky mucous develops in the lungs, making it a breeding ground for bacteria which leads to multiple lung infections. This mucous also blocks enzymes from getting to the intestines, causing malabsorption (lack of absorption of nutrients), which was why I was starving. And in most male with CF, the vas defrens don't develop, making them infertile.

So the monster inside me finally had a name. Doctors gave my mother a regime for keeping me healthy. They also told my mother that I wouldn't live past the age of seven. They didn't recognize a fighting spirit when they saw one.

Introduction

2009-08-23T18:53:00.000-07:00

Dismissed. The word hit my stomach like a rock. I felt like I had been punched in the gut. Just three classes away from getting my degree and I had been dismissed. The college didn't bother with a phone call or a formal letter. They merely sent an email. I sat there in my chair that Friday morning, looking at that computer screen in shock. I had just finished a harsh week of midterms and was getting ready to leave for another day of class.

I guess I should blame myself. I had picked a difficult major. Even by normal person standards, Genetics is a difficult and taxing major. I had thought that even with multiple hospitalizations, I could still keep up with the courses. I had thought that given my condition, my professors would be understanding. And while most were willing to let me make up missed labs and tests, there were a few instructors who refused to show any form of leniency.

That was what put me in this situation. I pushed myself to make it to each lecture, even when I wasn't feeling well. I had received an F. And that was enough for a dismissal.

I had planned to fight it even though I didn't know what the outcome would be. I had already figured out my options for if I didn't get reinstated. I wanted my degree. And if I couldn't get my degree in Genetics from a UC, then I would go to a state college and get a degree in biology. It wouldn't be a Genetics degree, but I could still carve out a future for myself in the scientific world. I felt better, just knowing I had a plan for each possible outcome made me feel prepared for anything. I would not be facing failure, just a possible change in direction.

While waiting on the outcome of my options, I decided to return to my first love, writing. I've been writing since I was ten years old. It was mostly just short stories and some journal writing. It's what provides the sanity in my chaotic life.

When I turned 25, I had decided that I would stop trying to pretend I was normal. It was exhausting, trying to appear normal and healthy in public, and trying to take care of myself in private. I had spent 25 years trying not to use Cystic Fibrosis as an excuse. I didn't want people pitying me. I was afraid that more people would be scared by my condition than already were. And I was afraid of receiving more rejection than I had already received. This and several other fears had plague me over my quarter century of life.

Over the years, I realized that by hiding the fact that I had Cystic Fibrosis from people, I was keeping a part of myself hidden. I had a skeleton in the closet that I shouldn't be ashamed about. I was refusing valuable opportunities to explain to people what I had and what Cystic Fibrosis does. And worse, I was leaving people in the unknown. And we, as a people, fear what we don't understand.

So at 25, I decided it was time to start being truthful on the subject of Cystic Fibrosis. I decided to start small, letting a few friends and a guy I was considering dating know I had Cystic Fibrosis. I even bought a couple of shirts stating that I had the disease.

Now at 27, I figure it's best to write it all down. At first I thought about doing an online scrapbook of the daily battle, but sometimes a picture doesn't always say everything a person hopes it will. I decided to instead to write about my experiences with living with the disease. I wanted to educate people about Cystic Fibrosis in a non-textbook style. I wanted to make Cystic Fibrosis less invisible to the world. And most of all, I wanted to stop hiding behind a facade of normalcy.

In a way you can call this book my coming out. Coming out about Cystic Fibrosis. Coming out about the daily battle 30,000 people in the United States population face.

In short, this is about my fight to inhale.