Friday, December 30, 2011

End of 2012

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.

Wednesday, November 23, 2011

Where's the Energizer Bunny When You Need Him

This week we have Thanksgiving to look forward to. As I am writing this, I'm looking forward to the Thanksgiving Feed my Bible study is having Tuesday. Pretty excited since 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, but using the oxygen while I exercise seems to help me with the gaspiness (They call it shortness of breath or SOB). The doctor says the exercise will help keep my heart and muscles strong. So that seems to be the goal. Try to keep everything else in working condition while my lungs go down the drain.

He did say that some CFers last quite awhile 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 I can't run or swim, I keep my mind busy and I'm okay. But what happens when I can't keep my mind occupied? And besides, it's pretty depressing sitting around and watching everyone else doing all the things you used to enjoy. I did say that if I hit a point where I can no longer eat, I'm calling it quits. Food is more than nurishment to me. It's an experience. And taking that away would make me completely miserable.

On a happier note, my niece visited this weekend. Since it was way too cold outside (cold air gives me severe coughing spells), we stayed in and had a picnic on the living room floor. She really seemed to enjoy it. Then we put on aprons (my grandmother made my mother and me these cute aprons out of Hawiian style fabric). I took pictures of my niece wearing my mom's apron. It was too cute. Then we baked chocolate chocolate chip cookies. She had fun with all the mixing. The hard part was not letting her eat the raw cookie dough. Children don't understand why they can't just lick the bowl. Besides the health reasons, I didn't want her having a sugar high with no outlet for the energy. The cookies turned out great. My mom took my niece to deliver the cookies to nearby relatives. She was pretty thrilled.

When they returned my niece donned on the apron again and helped my mom make dinner. She enjoys putting all the spices in.

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

I do envy her energy. I miss the days where I could just go, go, go. I miss singing without getting light headed.

For transplant related posts please go here

Saturday, November 12, 2011

November Update

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.


Monday, October 10, 2011

October Update

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

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.

Monday, September 12, 2011

View On Doctors Part 2

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.

Thursday, September 8, 2011

My View On Doctors

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.

Wednesday, September 7, 2011

SOB

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.


Thursday, September 1, 2011

September Update

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.


Tuesday, August 30, 2011

Finally Got the Shakes

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

Thursday, August 25, 2011

Glossary

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

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.


Friday, August 5, 2011

Monday's Appointment

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.

Wednesday, August 3, 2011

August Update

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.

Thursday, July 21, 2011

Updates, Lots of Updates

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

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.

Sunday, June 12, 2011

In Lock Up: Again

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.

Monday, May 30, 2011

Friday's Post

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.

Friday, May 20, 2011

I'm Famous!!!!!

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.

Friday, May 13, 2011

So Sorry for Being MIA

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.