Wednesday, October 15, 2008

Clinic Results

So today I had my follow up clinic appointment. It really didn't go as I expected. Here's the scoop:

My PFTs dropped a good bit from last time. When I looked back at my previous ones, they were actually about the same (with the exception of last time), but are still much lower than they need to be. They were 37/36 and last time they were in the mid 40s. So this concerned the doctors a good bit. The rest of my lab work was pretty good. HCT and Creatnine are really good. Mag was low, but not too bad (normal for me). WBC count was up to 3.1, which is much better. So at least that is going in the right direction. It's still low, and lower than its ever been since transplant, so it is still putting me more at risk for catching stuff.

At the time of clinic, my prograf levels were not back yet. And I never heard from my coordinator today. So either my levels are fine, or she forgot to call me. I'll probably touch base with her in the morning just to make sure, since I remain nauseated and have no appetite.

While I'm feeling better, I'm still very fatigued and "run down." I'm still somewhat SOB, and have not felt like eating much at all. While the doctors are concerned, they still don't' know what is going on. A couple of them think that I still might have had or have a slight/mild case of Mono, and these symptoms could be from that. Others just really aren't sure. One possible theory is that my immune system is so suppressed right now, that my body can't fight the littlest cold, and is therefore making me feel very fatigued and sick feeling.

PLAN: They want me to have a bronch done within the next two weeks just to make sure all is ok. When PFTs drop and stay consistently low, that is usually the 1st thing the doctors want to do. Although with me, I don't get bronched routinely, and have complications somewhat with my bronchs, so they don't automatically jump on that decision. However, they feel it is definitely necessary right now. I don't mind getting bronched, it just puts me out for at least 2 days, so I am not looking forward to missing more work or more school.

If the bronch doesn't show anything, then they brought up the subject of taking me off either one of my immunosuppressant drugs or the stop the photo treatments. I'm currently taking 3 immunosuppressent drugs (Prograf, Rapamune, Imuran), Prednisone, and doing the photo treatments. So my immune system is extremely suppressed right now. So their theory, is that maybe if they discontinue something, my immune system will regain its fight some and that I will feel better and have more energy. But that will be a decision that everyone has to agree on. It seems like things need to be balanced. On the one side, you don't' want your body to reject the lungs. But on the other hand, you don't want your body to stay so immunosuppressed that you keep catching things and feel sick all the time.

I'm going to also undergo a few stomach tests to make sure I don't have any acid or reflux issues. I've been through multiple tests before, and everything is always fine. I got another "lecture" today on how sometimes you don't' always "feel" the reflux, but it can be causing problems, especially with transplant patients, which in turn can make you have trouble breathing,be fatigued, etc. I refused 2 of the tests they were going to redo, but agreed to another one, that is less invasive.

The team also decided that I needed to be followed more closely in clinic and not once every 3 months. Although, I usually end up going at least one other time in between that 3 month period anyway. So they want me to return to clinic in 2 weeks, and have the bronch before then.

I feel like I'm being experimented with. It's getting SO SO FRUSTRATING and I'm tired of being tested for all these things, and yet I never get an answer. I know the doctors wish they had an answer too, and I will do everything I need to do to get an answer. It's just really hard sometimes. I've been subject to this my whole life with CF. And when you get a transplant, you expect to be relieved of this stuff for the most part. Normally, you don't have all these complications post tx. But then again, I still wouldn't trade them for anything, because I am still so thankful that I am just alive today and able to live a much normal life than pre-tx.

Please pray for answers and that all these upcoming tests will go smoothly over the next month or so. While I don't want any tests to turn up positive, a positive result would mean an answer and possible treatment to feel better. It's a difficult decision. Please pray that I am able to keep up with my school work and still be able to work and continue with my daily activities.

Christie was given the clear to go back home to Tuscaloosa today. She will return once a week for clinic visits. I know she is thrilled and will recover much more quickly and comfortably at home.


Emily said...

Hey, it was good to see you this morning. I'm so sorry you still don't have answers, I know how frustrating that is. I am praying for you.

"I will guide them along paths they have not known. I will make the darkness become light for them, and the rough ground smooth." Isaiah 42:16

"I find rest in God; only he gives me hope." Psalm 62:5

Jennifer said...

I hope you get some good news soon- if it has to be a positive result, something easily treatable!