Week eight

I made it to my primary care physician’s appointment.  They rolled me in a wheelchair and she sent me directly over to the emergency room.   Once there, they tried starting an IV from my left hand, they tried drawing blood from my left elbow and they finally got blood from my left wrist.  My red blood factor had dropped to 7.5 and they think it might be from the Ribavirin I am taking so they placed it on HOLD.   Come Friday it dropped to 7 but steadied.   They seem to think that the best course of action is to hold me until Saturday and while giving my dialysis to transfuse me with 2 units of blood.  Talk to you next week.

Being forgotten

This week at the dialysis center the Kidney doctor came in and asked me “why don’t you get a kidney transplant”. I told him that I was waiting for Shands Hospital to tell me whether or not I can get a transplant before or after I received treatment for my hepatitis C. He said check in with them because it would be safer with a transplant then continuing on with dialysis. So my wife called Shands for to ask these questions. That’s when we found out that the person who is taking care of our requests had retired. The nurse practitioner  who writes up my labs so they can be taken had left the hospital. She asked who was taking care of my case now? They told her that my case hasn’t been reassigned as of yet. So we asked when it would be reassigned? They didn’t know when but  would get back to us as soon as they knew.

Still waiting for a call.

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.

Still trouble with fistula

Now the hospital had stitched up the fistula and had dialysis treatment I thought it was safe to go back to the dialysis center. On my next treatment I went and had the dialysis done. The only problem that happened was that a golf ball sized lump that appeared. There was also a little blood on the outside of the lump. Dialysis told me not to worry that it would go done in a day.  We let it go for about a day but my arm kept getting tighter. My wife was nervous about my arm and sent me to see my primary physician.  We were given antibiotic just to make sure it did not become infected.  So finally we went to the hospital again to have the doctor look at it. We were sent to the ER room.  She looked at how tight the skin was and before she could look away it started to bleed. She quickly tried to put some gauze on top of it to contain the blood. Once she touched it the stitches gave way and there was blood everywhere. This time it opened up even bigger than the time before. So once again they held above and below and stitched it up. The doctor said enough is enough. Tomorrow we will take you into the operating room and fix it right.  They ended up giving me a hybrid fistula.  This either means I have a fistula with a graft sewn in the middle or I get 50 miles to a gallon.

So once again I stayed in the hospital.(The fourth admit for this glitch in dialysis).  For those of you who have a fistula you know they can’t run an IV in that arm. I’ve also had a lot of other treatments in my right arm. After all these days in the hospital and all the IVs and blood draws they’ve already run my right arm they were running out of space. They put a port in my chest so they could do dialysis treatment there. They were also able to take some blood tests through the port. This was an operation so they had to have an IV so for the third time in two weeks I had to have an IV in my wrist. My right arm was decorated up and down and on both sides with black and blues.

After they did the operation and I was home for a couple of days I tried to go bowling. Right-handed bowler with my fistula in my left arm so I thought I would be okay. During the second game my left arm started to bleed so I grabbed it to put pressure on where it was raining blood and called 911. Once again they took me to the hospital. When the doctor looked at it this time he said it was old blood. I’m not sure with old blood means but it did mean that the stitches didn’t give up or break.

There are a couple of lessons I and my wife learned from this roller coaster ride.  Pay attention if your arm starts to feel or look different.  If you are concerned, have a professional look at it. It could be an abscess or it could be a pseudo aneurysm.   Bleeding from the fistula area is not to be played with.  Call 911 and put pressure on it.  Do not panic.

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.

 

 

Disability???

This is the time that we decided to file for disability online. They were very nice and accepting, but the letter they sent me was very depressing. It was along the lines of, due to your imminent demise we will expedite your application. I was thrilled that we would not have to fight for disability now that I could not work.  I did have to wonder if they knew something I didn’t, or were they just being  encouraging in their own way?

I was also worried how we would pay bills as we waited out the 6 months before we started to get money. This was when we figured out we had to file for bankruptcy. To file for bankruptcy we acquired a lawyer to do the paperwork. It cost $2895 for him to file the papers and go to court. We tried our hardest to get him to file the papers as early as possible. This is because at any time I could be called into the hospital for a  transplant. It seemed like he took his time.

When you file for bankruptcy you get to phone calls from the credit counseling  company. They go over with you the different options you have to see if you really need to file for bankruptcy. They interview both you and your spouse to make sure you both agree. We also had to go online and take a class to see if we understood credit and where we went wrong.  Since where we went wrong is that I got too sick to work, it wasn’t hard to figure out.

When it finally became time for us to have our court appearance I was in the hospital. So my wife had to go by herself to the court with the lawyer to talk to thearbitrator. On her way to the courthouse the radiator hose in the car blow a hole in it. Lucky enough she was able to make it to her father’s house. So he was able to give her a ride to the courthouse. When submitted to the courthouse she found out that the lawyer wasn’t there. He does finally arrive but without the correct  paperwork. He was also the only lawyer without a suit on. So he called his office and asked them to send over the paperwork. He then asked the court officer if it would be okay to take the case that was scheduled after ours to go first. The court officer said that it was a very large case it would take a long time. The court could give him 15 minutes to come up with the paperwork. So one of the secretaries ran the paperwork down to the court office as fast as she could.

Our bankruptcy consisted of our house and that was it. So my wife confidently walked up to the table and gave sworn testimony to the arbitrator in Palm Beach County. I on the other hand was lying in a hospital bed in Gainesville. We can honestly say with the time it took our lawyer and the way he treated her case we weren’t appreciative of our lawyer. Before we received the last court paperwork, I will admit he did go out of his way helping my wife while I was in the hospitals by way of writing letters to our former mortgage holder who kept bothering my family even though they had received the house in the bankruptcy.

The time took about eight months before we got our day in front of the arbitrator. My wife took her father’s car home so she could  get ready for work in the morning. Then her father fix the car and traded cars the next day. For the next three years after this we received papers from the courthouse. It took a year after the procedure before they finalize the bankruptcy procedures. The lawyer told us to keep a record of the papers, we could be receiving them for a long time. He also told us to be careful now that our credit was clear we would receive lots of credit applications.

I was very proud of my wife who had to deal with both me being in the hospital,making an appearance in a courtroom , the car breaking down and two kids still in school all by herself.

IT STARTS

Then I turned 43, things started going wrong. I was throwing up blood but it wasn’t red. It was brown granules so at the time I did not know it was blood. This was a bleeding ulcer. I had my gall bladder removed years ago so I knew it wasn’t that.  I didn’t realize at that time is that I should have noticed my bowel movements had changed to black.  My spouse and daughter rushed me to the hospital.  It was there that they removed the blood that was still sitting in my stomach and I started having to worry about my stomach.All these stops in the hospital were taking their toll on my work schedule. Spending the weekend hospital is a terrible way to get your job done. Sure I was in the hospital my wife, kids and in-laws worked my route. Some days my wife had to both run my route and then go to her job. At this time I delivered snack cakes. I was lucky that my stores were very accepting of my condition. There were many days that I was late delivery or did not deliver at all. I was still hoping I’d have years left to work.

Unknown to me at the time, all the blood that was sitting in my digestive system would cause ammonia to overload in my brain.  My damaged liver could not clean my system fast enough.  While the medication that the doctor had prescribed to help with this would pull the ammonia out of my body, sometimes it just wasn’t enough, fast enough.  This sometimes meant calls to 911 and emergency room visits.  It always lead to my family having to try to deal with a large man who was not connected to the world they were in.  This sometimes caused me to talk to people who were not there.  Other times it would cause me to lose my words.  My brain would then substitute a totally different word.  I knew I was saying the right thing and would get upset that my family was not listening to me.  The most scary times for my family were when I would physically react to what I was seeing.

I often felt like I would spend a week in the hospital just to spend a week out of the hospital.  This continued for what seemed to be eternity.  It actually only lasted for a year.  A VERY LONG YEAR.

Probably the worst thing about going to the hospital is their standard operating procedure.  The first thing they do is hep lock so they have access to run an IV.  The next thing would be to take a vast variety of blood from two different locations.  Most of the time this would leave me bruised.  There wasn’t enough time for the bruises to heal before I was back in the hospital and they were drawing more blood.  So after about the third month, it looked like I was beaten daily.  I am sure they only had good intentions but it hurt.  This is a good reason do to everything possible to stay out of the hospital.