New MELD (Kind of)

   I had my labs done yesterday. My MELD dropped 2 points. It was a bit discouraging in the midst of everything else that was going on. I also managed to get my ultrasound scheduled for this morning. I figured that since it was scheduled for 7:15 in the morning, it would go fast and I'd be out in less than hour. While the technician performed her task, I told her about my blood clot in the portal vein and asked if she could look at it. I was curious about its size. When the test was nearly done she had trouble looking at the whole area. She excused herself and went and got her boss hoping he would have better luck. He seemed a bit bewildered and asked, "You've had a TIPS procedure?" We told him yes and let him know it was at the beginning of the year. He explained that he couldn't see any blood moving through the portal vein and it looked like the TIPs procedure wasn't doing its job.
   Some of you might remember the TIPs was put in to help me with my ascites and to re-route the blood flow that was alarming the doctors because the varice in my stomach were dangerously close to bursting. The tech didn't like what he was seeing and admitted that the equipment they were using wasn't picking up the images the way it was supposed to because it was old. He took his readings to the radiologist and the radiologist called one of my doctors to tell him what was going on. Unfortunately it was still early and we had to wait around for a couple hours. Lois headed back to work so I decided to go to my transplant clinic and wait to hear from my doctor. I figured if I was there and he showed up then he could come out and talk to me. Meanwhile Lois had decided to turn around and come back and wait with me. I felt bad because she had taken so much time off yesterday. Eventually my doctor called and my nurse set up a CT scan that he wanted. Now we have to wait for the results. They told me it it would be 24 to 48 hours. I am hoping to hear something on Friday, but I'm guessing it won't be until Monday. This has really been a lousy couple weeks. I have 10 days off, three days have already passed. I am going to vegetate for the next 7 days. Maybe. I don't know yet. I'm going to be housebreaking a puppy. More on that later.

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.

You Can't Have Just One (They Melt in your Stomach, Not in your Mouth)

This is my new regimen. I am now taking the ten small pills in the pill box each day along with the other four horse pills that I can't fit in the box. Plus I get to swig down the stuff in the brown bottle 2 to 3 times once a day. Thankfully I only have to take the shot once a week and I only have 6 more shots left after tonight.
Today I had another endoscopy and they found some minimal bleeding. I talked to the doctor about my ascites and he upped my dosage of the water pills. Before we even start thinking about a paracentesis procedure or the TIPS we are going to stay on the diuretics. He also upped my beta blocker because I have portal hypertension symptoms that can cause more bleeding. The beta blocker worries me just a little because any sudden movements or getting up too fast can actually lay you down real fast. I will just have to keep that in mind when I am rushing to put out any fires. Which I occasionally do. Because sometimes during my day job I have to put on my cloak and pretend I am superman. I'm just saying...
Yesterday I had a contrast CT scan and my Bubble Echo Cardio thingamajig and I am waiting to hear how that went. Plus they ended up taking more labs to check my MELD score. It seems that when they update your transplant status they don't want to use your labs from two weeks ago. They want them fresh from two days ago.
I am really feeling good with this transplant center. Everyone is very nice and helpful and willing to talk about any of the issues I bring up. Or it could be that I am loopy and under the influence of anesthesia and I am just making this up. Either way I win.