New graft

I came home one day and  showed my wife a bubble on my hybrid fistula graft. She looked at it and said it look like an infection.  So we contacted my kidney doctor and told her what we saw. She immediately made an appointment for me to see the vascular surgeon the next day. After the surgeon looked at it, he said we would treated it with antibiotics for 2 to 3 weeks. I went on with my day thinking that the matter was over.

The surgeon called my kidney doctor to tell her the results. She reminded him that I was a liver transplant patient and that they couldn’t treat me for 2 to 3 weeks with antibiotics. So the kidney doctor call me back Thursday night and told me my surgery was scheduled for Monday morning. I immediately said what surgery? They said the old graft had to come out and they would put in a new one. They would also need to put in a port, so they could do dialysis while I healed. So Monday morning around 9 AM we showed up for my surgery.

They finally took me in around 1:30 in the afternoon and ended up in recovery around 6:30 PM. They were able to go around the old graft with the new graft; pull out the old graft that the surgeon said had not wanted to come out; and get the port in. The next day I had to go to the foot doctor. The bandage on my arm had stains from the leakage of blood. But the port in my chest was losing a little blood out of the bottom of the incision. I believe this is the quickest appointment I ever had with the foot doctor.  He was great and  put an additional bandage on my chest where the port was. From there I went back to the hospital where I had a appointment with my kidney doctor.  The nurse saw where I was leaking and called for the surgeon to take a look.

So before I saw my kidney doctor I had already been treated by the foot doctor and the vascular surgeon. Both of who bandaged me back up.

Below are pictures of both the port and the graft.  As you can see I have a lot of bruising but funny enough less then last time according to my wife.  I am really looking forward to when they remove the port so they can remove the stitches in my neck that are holding the port’s internal tubing in place.

port

port

 

new graft location

new graft location

A Miracle

I received my transplant from a hospital in  Florida that was about 3 1/2 hours away from where I live.

My wife and I were going up there and thought that everything was going fine. Then they told me they had to take me off the transplant list because my sodium levels were too low. So they put me in the hospital for a week to raise my levels. It was the following Saturday that they release me but it was late in the day. So we stayed overnight and left out the next morning. Knowing that they just put me back on the transplant list and it was a long drive so we decided to wait until morning to fill the car up with gas. So Sunday night we went to bed knowing that we have to fill the tank in the morning and get a change of clothes packed up in case we got a phone call.

At 11:30 Sunday night we received a phone call that they had a liver ready for transplant. If I could get there before four in the morning? We cross our fingers  took off for  the next gas station and headed out. My wife made a 3 1/2 hour trip in 2 1/2 hours. Now they tell you when you’re on the transplant list, it’s up to the doctor if he going to do the transplant or not. So you can be on the operating table and if the doctor doesn’t like the look of the liver he will turn you away. I was lucky and the doctor like the look of the liver and was going to do the transplant. When they took me into the operating room the doctor was still getting the other liver ready. There was a little half wall between me and the doctor. So I was able to talk to the doctor and ask him how things were going. He said things were going fine but it’s time for you to go to sleep. When I woke up I had a new liver.

The liver transplant surgery lasted hours.  While I was asleep on the table, my family was in the surgery waiting room with lots of other families.  The surgeon would have one of his nurses call up to the waiting room ever couple of hours to let them know how I was doing.  At the end of the surgery, the surgeon did come up to tell my family that the surgery had gone well.  First time in hours that my wife was able to breathe easily.

Now when you get a new liver it doesn’t work right away. It’s got to thaw first. They do that by attaching it to your blood system. This allows your blood to slowly warm your liver. So even after the operation they won’t know for sure if it works for two or three days.During this time they will be taking out the drainage tubes. As soon as they get the tubes out, they will get you back on your feet. Then you will have to go to the  bathroom.This will become a strange part of your life because everybody is  checking to see if you past urine and had a bowel movement. These become the most important things in your life. Without them you cannot go home.

 

THE LONG ROAD

Then we started the transplant procedure. This is when you meet with the transplant doctor and then have to  go through a whole group of tests. One of the times I was in the hospital  a very nice hospital doctor heard that we were in the process of trying for a transplant. He was filling in for my doctor who was on vacation. Since he was part of the Miami transplant team he told us to contact the hospital we wanted to go to and get a list of tests we would need. My wife called the hospital and got the list.  He then ordered them all done for us while I was in the hospital. Some of these tests were very easy like blood test and blood pressure. Then there were other tests like the stress test and MRIs. Then there were the really bad tests, that was the upper and lower G.I. track. Or in other words and they look down your throat and up your rectum.This is done with the camera on a long feed both ways.  I heard they do this for most operations.

The  hospital where I was to get my transplant suggested that I have my Advanced Directives filled out.  Luckily, My wife doesn’t wait and she fill out my Living Will, Medical Surrogate and Power of Attorney at this time.  The Living Will listed out my wishes in case of a worst case situation happened.  The Medical Surrogate let the hospital know that my spouse was to make my medical decisions for me if I could not.  It also told them that if they could not contact my wife that my adult daughter would make my decisions. This would turn out to be a very important thing for me to have after the transplant operation.  You’ll find out why after the operation. Both the Living Will and the Medical Surrogate papers were available right at the hospital.  After everything we went through, my wife now recommends EVERYONE have whatever Advance Directives are available to you in your state.  You do not want to be at the mercy of whatever the doctors or hospital decide is best for you.

The only other thing you need for the transplant operation is insurance. You will give them all your insurance information  and they will then confirm it. This is when they tell you of the cost of the operation. Before you recover from hearing what the operation costs, they then will tell you of the cost of the medicine you’ll be taking for the rest of your life. All these costs are based on the best case scenario. So again that did not work out in my case and mine were much higher. Luckily my wife’s insurance was very understanding and took care of the extra expenses. If you lived through seeing what the costs will be in you should be okay with the operation.  They did tell us that you do not need to have insurance that covers the cost of the surgery but you must have a certain percentage of the cost set aside before they will put you on the transplant list.  I have no idea how someone without insurance could even begin to start this process.