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.

Sunday, January 10, 2010

The Shape of Things to Come

We had some good news Friday, more or less. My CT scan revealed no lumps or tumors and, amazingly, no ascites -- the excess fluid that I believed all along was sloshing around my stomach. Evidently I just got fat on my own. I suppose having a degrading liver has something to do with that. But the scan did reveal a blood clot located in my hepatic portal vein. More on this in a second.
We first met with the pharmacist who did a run down on all the drugs I am taking. She then informed us that my transplant coordinator wasn't in because she had the day off. I was very disappointed to hear that, because up until now, we have still not had a chance to meet her. My last coordinator left the clinic almost 4 months ago. I was really looking forward to meeting the new nurse who is in charge of my care. That transition has left me feeling a little lost, especially since I had such a good rapport with my last coordinator and now I feel a little lost in the shuffle. And even though I understand that her jumping into a new job and learning the ropes and dealing with the patients who are far sicker than I am, I had at least expected to have some sort of meet and greet in there somewhere.
We later met with a P.A. who seemed rather nice. Lois and I voiced some of our concerns and told her about some of the problems I've been having. After a minute or so she told us about the blood clot. She told us that a clot like this was not uncommon with people who were going through liver failure and that it most likely posed no threat, but that we would have to continue to monitor it and treat it if it started to look like it was going to be a problem. We were also told that this particular clot was unlikely to displace itself and that it would probably just harden and stay where it was.
When the doctor came in we first started talking about my stomach pains and the whole issue of the blood clot kind of got lost on us. Once I started talking about some of the pains I was having and the difficult time I had catching my breath and losing my voice when I talked, that became more of a concern to my doctor than anything else. After I described an area where I got deep chest pains, he decided that I needed another echo bubble cardio-thingamajig. We never talked about the clot. Later I wanted to kick myself, especially after doing a little research on blood clots in the portal vein. Some of the symptoms I read about online described exactly what I was feeling. Elevated liver enzymes, sharp pains beneath the rib cage (exactly what I am feeling) and stomach pains.
I had labs drawn on Friday, so I am anxious to see where my new levels are and see if my MELD score has changed.
But back to the blood clot, the P.A. said that the thing wasn't the type to displace itself, and it shouldn't block the pipe the blood was flowing through. And it's a pretty damn big pipe, it’s as big as the esophagus or the aorta. I’m not sure how she knows it won’t block it.
What makes me madder than hell is that we kind of got lost in all the other topics, when the doctor finally showed up we never went back and talked about the one thing that seemed most important of all, and that was the damned clot.
After it was all said and done, the doctor left us with a series of tests that they are going to run. Another endoscopy, a colonoscopy and the heart thingy. We will see what they find there and they will check my new labs to see if the MELD has changed or if there is anything else that looks out of the ordinary that they might want to think about addressing. When I get my endoscopy I will talk to the surgeon about the blood clot and I am planning to talk with my coordinator later in the week.
The funny thing about it all was that the clot seemed to be the least of anybody’s worries and the P.A. kind of frightened me when her voice started cracking and her face got all flushed at the possibility of admitting me right then and there to see what was going on. But then the doctor came in and said, "Oh, we'll run some test and see where we are."
I preferred his approach a little bit better, even though he did seem a little more concerned with what was happening in my chest than in my stomach. I will get my new MELD score sometime this week. I am hoping for at least a higher number.

Wednesday, January 6, 2010


I haven't been feeling very well these past few weeks. Lois finally convinced me to call the transplant center and see if I could get my February appointment moved up to an earlier date, but the best they could do was to get me in four days sooner. Not a lot of help. Anyway, my coordinator is going to try to get me in sooner if an appointment cancels.
I am kind of nervous; she mentioned the possibility of doing a Paracentesis procedure. I am not wild about the idea of having a long thin needle stuck into my stomach so that they can drain fluid from me, but the good thing about this procedure is that they can tell if there is an infection. They can also check for liver cancer -- not uncommon with advanced hep cirrhosis -- and remove enough fluid that could be causing some of my breathing and stomach problems. I guess if it takes away my stomach problems then it would be worth it. I will have to wait and see, though.
In the meantime, they are going to schedule another CT scan and look for anything abnormal. If it looks as though I need to have a paracentesis then they will do one I suppose.
I am also curious about my last endoscopy. While the bleeding has stopped in my esophagus, it did show that the varices had moved into my stomach. I don't see this being my immediate problem. I'm pretty sure that if I were bleeding then I would know it. But maybe the stomach varices could be part of what's causing me so much pain? I'll have to ask the doctor about this.
Other than having all these stomach aches, I am doing pretty good. The nausea pills don't seem to be doing anything at all to help, so maybe it is just ascites. Trying to explain this over the phone to my coordinator was kind of hard because I have yet to meet her since my last transplant coordinator left the clinic. She doesn't really know anything about me except for what she's read in my file. It has also been a while since I've seen one of the doctors. I would imagine it is also kind of difficult for them to physically place me, seeing how they probably don't remember me very well. I have only been seen by the surgeons twice in the last year and a half.
I hope that my next visit helps determine some of what is happening to me. As my wife pointed out to me, they supposedly can fix just about anything with the right medications. And this is my worry, I am already taking 18 - 20 pills a day. I worry a lot about my kidneys.
I am hoping for a good year. There is a good chance that I'll get my transplant this year. This is hard for me to wrap my head around sometimes.
Well, the transplant clinic just called and there is an opening on Friday to meet with the doctor. I was also scheduled for a CT scan in the morning. Weehaw! I guess I'll no more on Friday.
Be back soon.