Monday, January 25, 2010

"We're going to need you to get a little more sicker."

My MELD score has dropped 3 points. This is supposed to be a good thing. It means I have a while yet until transplant.
This little bit of information has brought me some disappointment. It feels like such a step backwards. I suppose I am just tired of it all.
As I've mentioned before, because the transplant surgery is so high risk, doctors don't like to do one until it is absolutely necessary. Most often this happens when the patient is very, very ill. Another reason they wait so long is because the organs are just not available and they really have no choice. Hence the long waiting list.
After I had my endoscopy/colonoscopy on Tuesday, the doctor informed me that everything looked good. No polyps. No lesions. No tumors. The varices in my esophagus stopped bleeding a year ago and I don't appear to have a problem there any more but the varices are now in my stomach and they will have to continue to monitor them.
My transplant coordinator (from now on let's just call her the TC) called me on Thursday and said that my heart and lungs and all that stuff looked relatively normal. The only thing they saw in the bubble echo was that I had a little heart murmur which we were already aware of. She was going to run that by the doctor to see if that was something they wanted to fix.
So basically all these tests came up with nothing to explain away how I've been feeling. I still have awful stomach aches and the shortness of breath doesn't seem to raise any flags. They don't feel that ascites is a factor — which I find boggling. Especially since ascites can put pressure on the diaphragm and make it difficult to breathe. According to the contrast CT scan I had two weeks ago, they didn't see any ascites around the abdomen. The doctor’s diagnosis was that there was maybe a little ascites. Perhaps I am having sympathy ascites.
I also learned that I am starting to get jaundice. Up until now the yellow has been hard to detect because of my skin color. He saw it under my tongue and in my eyes.
And so, after my endoscopy the doctor said that with my new MELD score, it was likely I was good for another year or so before transplant. That seems like a long time considering it has almost been two years since this all started. The way the doctor talked to me seemed a little disconnected. I felt like a man who just brought his car into the service station for a tune up. "Everything looks good Mr. Kyle, bring her back in about 6 months."
"Okay Bob, see you in 6 months."

(Tick tock, tick tock, tick tock)

Meanwhile my thoughts have started running random. I'm thinking about my talk with the TC last week.
"Oh that's a good score. There's nothing wrong with that. You want to hold on as long as you can and they don't want to do transplants too early because of all the risks involved."
She's offered me some encouragement and then she drops the ball when she brings mortality figures into the picture.

"What the Ef!"  I'm thinking to myself.  "And yes, I know the figures. I've known since March 15, 2008. It was a Saturday. The day I got out of the hospital and went home and got on the internet."

Maybe I just need a long vacation. I think I've got a little time now that I have this new window to look through.


  1. The ambivalence inherent in your situation is just awful.

    Hang in there.

  2. I agree. I think I'm going to jump in the deep water and try doing the interferon treatment again. If the insurance will cover it I will be hanging on tight. Sounds like I will have some extra time.

  3. It does suck having to wait so long. But it is better to wait. My transplant was a little 'unusal' so maybe my experience is different, but a transplant dosnt mean that all the symptoms suddenly go away. I still get nausea frequently and my hands shake all the time. So while you can hold on do. Plus there is also the risk of things like rejection. You tend to go downhill a lot faster if you get rejection.

    Hang in there. Keep doing all you can to stay healthy. And try not to drive yourself mad thinking about it.

  4. All I can say is that... I get angry on your behalf - often.

  5. Oh Beaux, the limbo of the medical system can be so very frustrating. Maybe taking that vacation would help to put your mind in a better place. That way, you will be able to come back with a fresh perspective on how you are going to proceed from here. Being another member of that "chronic illness club" allows me to understand just how crappy being "tuned up" and sent back out into the world, can feel. I am so sorry, Beaux.

    In the meantime, love on your family as if there is no tomorrow, because even those who are not chronically ill are NEVER guaranteed that. I guess one of the "gifts" of knowing that the body is imperfect is that it helps us to understand how important TODAY is. Try to focus on the "todays", instead of the tomorrows.

    Big hugs,

  6. Kim,
    That all sounds kind of discouraging. I keep forgetting that not only are you dealing with CF and the other medical stuff, but you are also dealing with the aftermath of a transplant. It must be a pain to stay on top of it all the time.
    How are you doing? I hope things are going better.

  7. razorandvines,
    That's because you're sweet.

    I am loving my family and thinking of some place warm for vacation.

  8. Shortness of breath is nothing to shrug at, I know I have Emphysema. I truly understand the misere of waiting. Even with the statistics I imagine you want to get beyond this.

    I get to go in for my own colonoscopy in another couple of weeks. They know somethings wrong, just not what. My feelings are whatever it is, I'll deal with it. It's the not knowing that keeps me awake at night.

    Nothing I'm going through compares to the 2 years you've already been subjected to. I wish there were something I could say to comfort you.

    A vacation sounds like a great idea to get away for awhile. (Hugs)Indigo

  9. I just can't imagine how confusing and frustrating the wait must be. I am so sorry you are going through this.