The right arm

They decided it would be okay to put the fistula in the right arm. I went to the hospital at about 10:30 in the morning. This time they used the left arm to put in the I. V. and take the blood pressure. They had to put the IV close to the hand so they could use the forearm to take the blood pressure. The bicep in the left arm is where the graft was that they had to remove. They were able to get me on the operating table before noon. I was out of the operating room by a little after five. I left the hospital at around 7:30 at night. I was the last one to leave recovery. As a matter of fact the nurse that was watching me was called back in after going home and eating dinner. When I got out of the car at home my right arm was throbbing so much my wife called the Doctor.   He said it was probably just the nerves in the arm and to just double the pain pills for the night.

The left arm had about eight stitches in it and really didn’t hurt at all. My neck had to three stitches in it and made it hard to shave but it didn’t hurt. Now my right arm as far as I could see had no stitches. It was just glue closed. There was a large lump in my forearm before the elbow. There was another lump of smaller size left of my bicep. This is where he cut the veins and took off the side branches and then connected them up together. I took a week off bowling because it hurt a little to straighten my arm. My wife kept saying that it look like a little alien would come crawling out of my arm with a large lump was. It took about 3 1/2 to 4 weeks for that large lump to shrink down to a small lump. I use my arms to stand up, so during the first week after the operation it was very hard for me to stand up. My wife went back to putting a gate belt on me to make it easier to lift me onto my feet. The Sunday two days after the operation we went out for breakfast. I was able to get into the booth okay but when it was time to get out my wife grabbed my gait belt and pulled me out of the booth. I did not quite get my knees straight on this attempt so I then collapsed on top my wife and pinned her to the table next to us. Thankfully the waitress saw the gait belt and knew what to do and lifted me to my feet. Another waitress tried to help and started reaching for my arm. Both me and my wife said the same thing… don’t grabbed the arms.

Around and Around We Go Again

The new graft has been working now for about two weeks. So now it’s time to have the port taken out and get back to normal. I went to the hospital and had the port removed on Friday. I went to dialysis on Saturday at the end of which I had 101° fever. So I was told to go back to the hospital to find out what was wrong. I spent 29 hours in the emergency room. I was admitted and was supposed to get a room. A nurse came in and said you don’t look like an ICU patient let me check with your doctor. At this time they had a room for me,  it was just being claimed. This is was about six hours into the stay at the emergency room. By the time she found out that the doctor did want me to go to ICU, the room was given away. The reason all this happen turned out to be a urinary tract infection. So I was treated with antibiotics and  the infection went away.

So now it’s been about a week since they took out the port and there’s another problem. There seems to be another infection in the graft. This time they want to take out the graft. They believe my body is rejecting the materials that make up the graft.  My wife was the one who noticed the infection.  They want to do this asap but we are waiting for the scheduling of the sonogram of my right arm.  They want to map it first to make sure there is a vein that will handle becoming a fistula.  Then they’ll put in a another fistula in the right arm. So basically we start all over again.

Fistula: still waiting for it to work right

It’s time to try to use the fistula again. We start the same way we started the first time with both 17 needle. Then we’ll go to the 16 needle and finally the 15. Needles are based on resistance just like wires. So the larger the number the smaller the needle and the more resistance. Now my fistula is one third normal skin and two thirds under scar tissue. So far I’ve only been able to get them to stick the scar tissue twice. They only want to stick me into the skin that is thinner. The problem with that is the whole area is only about an inch and a half long. That’s a lot of sticks for such a small area. They say they will stick me wherever the surgeon marks my arm. Right now they been using the fistula for two weeks that’s a total of six sticks. They have missed twice. Every time they miss it makes a bruise about 3″ x 3″ on my bicep. On the two times that they have missed they used one needle in my arm and the other in the port. I was really hoping to get rid of the port so I would stop having this thing sticking out of my chest. Now I am thinking that I’ll try to keep the port in for a while longer. This will give me time for the bruises on my arm to heal a little. This also makes it easier for me to get out of dialysis because when they stick my arm I have to wait 20 minutes for the bleeding to stop. Usually I don’t mind the wait but I still have lots of appointments to make at the center that is 3 1/2 hours away. I have two more appointments at the dialysis center before I make it to the surgeon. When I make it to the surgeon he will make the final decision of where they can and can’t stick me.

Now the kidneys

Now another thing that hepatitis C took out was my kidneys. To prepare for when my kidneys would fail they needed to put in a fistula. A fistula is where they connect your artery to a vein usually in your arm.  The connection to the artery causes the pressure to build in the vein and the vein then gets larger.  So they first tried to put it in my left wrist but that didn’t work. So they had to go back in and reverse what they did with my left wrist and try further up the arm. Once they got it working around my elbow they had to move the vein further towards the center of my bicep. This would make it easier for them to connect me to the machine. Altogether it took about three operations to get it all done. Then we found out that it was in and working but not at the correct rate of velocity. So they went in one more time and put in a stint. So now whenever it came time for me to start dialysis I would be ready.

Things are pretty well going okay when all of a sudden I had chest pains. I went to the emergency room to have it checked out. They checked my heart out and found a pleural effusion. So they had to go through other tests to check the heart. I took a stress test and had several x-rays of my chest. This is when they determined I needed to start dialysis. This all happened around the Fourth of July. So when they started me on dialysis they told me I could not leave the hospital until I had a dialysis center that would take me. Since it was Fourth of July weekend there is nobody open who could take me. So for the next four days I was stuck in the hospital so that they could do dialysis on me.

When everybody came back to work after the holidays they said it would take a few days to get all the approvals. My insurance company is very nice.  They had given me a phone number where I can call to see if I’m approved for procedures and etc. So I called them, they said that everything was approved on their end. I told them of the problem I was having and that the hospital said it would take days to get out of here. They told me to call down to the nurse in charge every 30 minutes until they got me a center to go to. I did that for about 2 1/2 hours. Then they told me to stop calling they were going as fast as they could. So I did what they asked and I stopped calling. Instead I had my wife call every 30 minutes. By the end of the day they found a Center for me. So I was discharged that night and got to go home

New year 2012

In 2011 through rehab, I learned to walk and  to eat. It was a pretty good year. I was hoping the worst was behind and I still wish that today. I was in and out of the hospital with all the normal things transplant patients have to deal with.  Colds, stomach flu and etc that I needed help to conquer because they keep my immune system low.  What added to this was that my body had used up its reserves while I was in the coma and while I was gaining strength.  It took a hospitalist doctor to actually look at me as a whole person instead of as a liver transplant patient.

At the beginning of to 2012 things were going pretty well. Then on February 15 my speech was slurred and my blood pressure was way too high. They admitted me into the hospital and decided I had a TIA.  A TIA is a mini stroke. Little things like this happen now. Luckily my wife had noticed my slurred speech and got me to the emergency room.  By the time I got there,  I no longer had the slurring and I had never noticed that I was slurring my words.

There are things they don’t tell you you’ll have when you have hep c. I found out that I had rheumatoid arthritis or at least rheumatoid arthritis like pain.When you have hepatitis C, they can’t tell you one way or another. They first treated me with 4 mg of medrol. This made it possible for me to walk with a walker. Once again it was very hard for me to get in and out of cars or sit in chairs. So at this time my wife and I stopped going to restaurants or going to family functions.This is when we also found out that hepatitis C can attack your kidneys. Knowing that my kidneys were going to fail we proceeded with the procedure that would give me a working fistula. A fistula is where they attach one of your veins to your artery.  The pressure slowly causes the vein to expand in size.  This allows easy access when you have dialysis.  Just like all the other times the first time it  did not work. So we tried again and yet again until we finally got a working site. Then the site had to be moved to a better location which took another operation. The good thing  that happened during this time was that they gave me another 4 mg of medrol. So now my dosage was a total of 8 mg of medrol. This allowed me to walk without the aid of a walker. Once they finished with all the operations they wanted to drop me back down to 4 mg of medrol. So I asked if I could continue on the other dosage. They said this is a steroid and could do damage to my liver. I called my liver doctors and told them of my dilemma. They asked me if I wanted quality-of-life or quantity of life. I said I wanted to walk. With doctor’s permission I am still on 8 mg.

We have learned over time that you must learn to communicate with your different doctors, because they will very rarely communicate with each other.