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.