Monday, Monday

   My coordinator called and left a phone message saying that they are going to do the TIPS procedure on Monday afternoon. I am both excited and apprehensive about it. Waiting for a time bomb to go off inside of me scares me to death, so I'm happy that they are doing it. But then there is my nervousness of the procedure itself. I've only read a little on the surgery and risks; I haven't had a doctor review this with me yet. I guess that will all happen on Monday morning. I think the fact that they have taken all these steps to get this done so fast really speaks for itself. I think they are generally concerned.
   There was also mention of the possibility of staying overnight even though it is considered an out-patient procedure. That's okay with me. I'd rather have someone monitoring me after I get a tube shoved through my vein.
   So...I'm very happy. Plus I'll get another nap.

Today's Update

   Well I heard from my coordinator and my CT scan shows that there has been no change in the blood clot in my portal vein. It remains the same after months of being on coumadin. Her understanding is that it is probably unlikely that they can do a TIPS procedure with a partially blocked vein. They can't afford the risk of moving it. Tomorrow they are having a board meeting with the doctors and they'll discuss my options. The good news is that there was no sign of anything else. No spots indicating tumors or cancer stuff.
   It is still a lousy situation though. Somehow we are going to have to resolve this before I have a blood vessel burst. The beta blocker will only help for a while. Lois is thinking that they might end up hospitalizing me and treating me with heparin in order to get rid of it. I guess we'll just have to wait and see. In the meantime I think we should have a pool on the call. That might be fun.
   Good night all.

(Wipes sweat from his brow)

   No cancer!!! 

   Lois will have to continue getting checked every year to keep an eye on things and they will do another biopsy the next time she is checked. We are all feeling better about things right now and very happy.

   I had a contrast CT scan today and the doctor will have to look at the results and determine what they want to do about the TIPS procedure. They are looking to see if the blood clot that I've had is still there. It is in the portal vein, which is the vein that they would be connecting one of the hepatic veins to. If it is still there, it could play a big role in whether this procedure is going to be possible. Another waiting game, but I'm not so worried about it. They raised my beta blockers again to help the blood flow. Two years ago I was taking 20mg., now I'm up to 120mg. The bad thing about that is, if you aren't careful standing up you can take a head dive. I've gotten a little dizzy before, but never had a tailspin.

   Wishing everyone a great weekend.

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 have my endoscopy tomorrow. I've gotten rather used to them. In fact, I look forward to them. I enjoy the sleep.
   The bleeding in my esophagus hasn't happened for over two years, and the only place they have seen any leakage is in my stomach. That - they say - is a whole new ball game, and we're not going there unless we have to. I do have worries about it though, having been on coumadin for the past several months. I am hoping that everything looks alright.
   In other news, we are still waiting for Lois' biopsy results. We should get them tomorrow. The holiday kind of through a monkey wrench into that. I will let everyone know as soon as we find out anything. It has certainly been a very long week. 
   I did however get my labs drawn and my new MELD came out to be 19 again. For right now I guess this is my magic number. 
   Take care.

1/11/11

Lois and I return to the hospital on Thursday. I will be doing new labs for my MELD score and Lo will be taking a necessary motility test to check muscle pressure in her esophagus. It sounds extremely uncomfortable. They will be feeding a tube up her nose, down her throat and into the esophagus. This is a preliminary procedure that needs to be done before they can start working on fixing her other problems.
We are still waiting to hear from the hospital about her biopsy. As you can probably imagine, this has been a strenuous time. The girls are a bit unsettled. Hopefully we will hear something soon. Waiting is always agonizing. I sincerely thank everyone for their comments and e-mails. It means so much to Lois and I.
My friends and family are sick right now, and many blogger buddies I know have their own illnesses happening in their lives. Some are very sick. It is hard to think about all those suffering without feeling like an emotional sponge. I am thinking of you all tonight. And I hope this new year brings you peace and health and happiness.

The Endoscopy

Imagine your stomach sliding up into your esophagus as you move or sit or lie down. It sounds pretty awful huh? It sits there bunched up making it difficult to breath and causes heartburn. It is also brutally painful at times. This is what the endoscopy exam discovered.
The pictures that were taken also revealed striation marks in a couple of different places confirming stomach ulcers. It does not surprise me that there would be ulcers; after 2-1/2 years of worry and stress, why wouldn't there be? I can see it in the eyes and hear it with every groan.
There is also the acid reflux. The thing that led us here. At the bottom of the esophagus where this whole mess takes place, the stomach acid splashes up into the esophagus and has done some damage to the tissue. A biopsy is taken to check for cancer. We will now have to wait for almost a week for the results.
My doctor explains these things to us and draws diagrams. He looks me over and says, "You look real good."
Lois looks up from the hospital bed she is in and says, "He's doing all right." Only today he isn't my doctor and I am not his patient; Lois is.

                                                -January 6, 2011