Wednesday, December 23, 2009

Doctor Appointment

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

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.

Friday, December 11, 2009

CFer Christmas List

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.

Sunday, November 29, 2009

Bikini Ready By January

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?

Friday, November 20, 2009

You Can't Take a Vacation From Cystic Fibrosis

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.

Saturday, November 7, 2009

Good News

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.

Wednesday, October 28, 2009

Greed Knows No Country

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.

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.

Sunday, October 25, 2009


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.

Wednesday, October 14, 2009

Home Again

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.

Tuesday, October 6, 2009

In Lock Up Once Again

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.

Wednesday, September 23, 2009

Four Walls and A Door

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.

Monday, September 7, 2009

The Monster Within

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.

Sunday, August 23, 2009


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.