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.

I'm alive

   I experienced my first serious spell of encephalopathy this week. I'm pretty sure I managed to scare my youngest. I was incoherent and nothing I was saying was making any sense at all. I had to have Aly call Lois at work and she came home to babysit. We almost went to the E.R. but I drank some lactulose, ate some food and took a nap. Eventually I started feeling better. This was the second time I had a big scare like this. The first was back in the beginning when I was terrified of throwing up, thinking that my varices would start bleeding again. I've had a couple hard weeks this month. My health seems to be changing a lot. I am tired all the time and I hope that I can hang in there at work.
   I am thankful for the emails and the comments I've received lately. But I am not always up to the task of writing and getting back to everyone when they stop by. My sincere thanks to all my visitors

Epic Fail!

   It is never a good sign when you wake up from your endoscopy and the doctor greets you with: "You're starting to worry me."
   After Lois mumbled something like, "That doesn't sound good," The doctor went on to say that he didn't like what he was seeing and followed that with, "We need to get you transplanted."
   The doctor told us that I had a tiny leak in my esophagus and that he wasn't worried about it, what worried him was the varices in my stomach that looked like they were swelled up and and ready to burst. He explained that he wanted a CT scan and that I probably needed to get a Transjugular intrahepatic portosystemic shunt (TIPS) procedure done as soon as we can do it.
   The procedure is done by connecting two blood vessels in the liver. A radiologist will insert a catheter into a vein in my neck that has a balloon and metal mesh stent attached to it. Using X-ray equipment, the catheter is guided to a vein in the liver to where the balloon is blown up to place the stent and then they connect the portal vein to one of the hepatic veins. Once this is done the blood should flow better and take pressure off the stomach, esophagus, liver and intestines. In the meanwhile he told me to watch for any bleeding and to get to the hospital immediately if I had any problems. "If you start throwing up blood, have black stools, you call 911," he said. "Don't screw around."
   I'm not very worried about the varices bleeding, but I am more concerned about the procedure itself. There are a number of risks such as bleeding, infections, damaging blood vessels and soreness in the neck. All of that sounds awful to me. Plus, we were told, that even though this procedure was something I needed it could also increase my encephalopathy. This is a whole new monster of its own.
   I guess they feel it is serious, though, because by the time we got home the clinic called to schedule my CT scan for this Friday. I imagine they'll want to set up the TIPS soon after that.
   I am somewhat spooked. I'd be lying if I said any different. So much is happening all at once and we have still not heard anything on Lois' biopsy. That just makes me mad. Big breaths ... big, big breaths.
  Maybe we can set it up for my 50th birthday, which is Monday.

Update

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.