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.

My timeline in pictures.

250 lbs  2008

250 lbs 2008

2009 after brain surgery
2009 after brain surgery

2010  121lbs

2010 121lbs

2013  190lbs on dialysis

2013 190lbs on dialysis

 

 

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.

 

 

YOUR BRAIN ON AMMONIA

So with all that going on we started our new life. We borrowed $50,000 from my in-laws. This allowed us to buy a house and start a new in Port St. Lucie. I was able to get my brothers and a friend to help me with this move. It was about an hour north of where I was living at the moment. They did most of the moving, and once again I had to deal with ammonia.So as soon as we were finished with the move they went home and I went to the hospital.

If you ever know anyone who has had it,you will hear about a thing called Lactulose. This is what you take to keep ammonia under control. Ammonia will build up in your brain and you will go out of your mind.  You are physically in this world but you see and react to the movie your brain is playing for you.  The fact that amazed me was that the level of ammonia wasn’t as important as how my brain was reacting to the build up of ammonia.  I was put in the hospital will both high levels of ammonia and with low levels of ammonia.  The body is a wonderful thing.  It will do its best to try to keep you regulated.er had hep C o

While we were in the middle of moving the ammonia was building in my brain.  The stress of moving and losing our home and the bankruptcy were just the extra I needed for my body to tip me over the edge.   While we were loading the truck up, I was okay.  I wasn’t moving as much and I would get distracted easily but I was almost myself.  On the trip up to the new house, the ammonia took the next step and I forgot how we were getting to the house but I did get my brother there.  As we unloaded, I became more aggravated with everything.  I was more willing to pick a fight.  I wouldn’t take more lactulose no matter what my wife tried to hide it in.  Before everyone left, I fell asleep.  Unfortunately for my wife I then woke up after midnight.  My wife who had been through this before with me was thought for sure she could get enough lactulose in me to bring me back.  Just before 5 am, I started to physically react to the “movie” playing in my head.  I ended up spilling water, spilling , and cutting open my knee.  I allowed my wife to clean my knee and bandage it.  I don’t know if the pain from it was enough to jar me loose from what was going on in my head at the moment or if it was just dumb luck.  This moment of clarity did not last and I started tearing through the house and boxes that had not been unpacked.  This was when my wife had to call paramedics.  They convinced me to lay down on the stretcher, but when they strapped me in that I started calling for help and my wife.  I couldn’t hear her to respond or the doctors trying to tell me to calm down.  I was loud enough that Security even got involved.  They admitted me to the hospital and I received my first lactulose enema.   It brought me back quite quickly, but this was probably one of the most emotionally devastating times for my wife.

Lactulose gets rid of the ammonia by making your body passed the ammonia. So you take this stuff it’s best to wear diapers. If you don’t take this stuff you’ll wind up in the hospital with a lactose enema. What I found to be the easiest way to figure out whether I needed to take more of my lactose was to see whether or not I could say the Lord’s prayer. If I could say it? Then I wouldn’t have to take more lactulose. It’s very important that you come up with some way to check yourself before the ammonia takes over. If you don’t come up with a way to check it you will end up in the hospital a lot. When you wake up in the hospital you will be in restraints.

It is at this time that I and my family figured out that it is very important to have a list of your current medications and a printed out listing of your medical history.  The paramedics and the hospital will love you for them and you will be thrilled that you are not being asked questions while you are trying to calm your love one.

You will notice that I say that I lose my mind during certain parts of my story but I am still able to write about what happened.  I do this by allowing my wife to fill in the blanks. This will become much more important later in the story.  You will see.

 

 

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.

Staph or Strep

A couple of months later I woke up unable to move my leg.  I was rushed to the hospital.  They told me that I had a staff infection. It had started in one leg and  spread to the other leg.  Surgeons came in 4 times a day to see if they would have to operate.  They gave me antibiotics through IVs while in the hospital and later when I was sent home with nursing care.  This was going to become the easy stuff; it would get much harder. This would be the first time I spent time in wheelchair but not the last.  How they did the home care was kind of interesting. They sent a box of supplies that consisted of a stand and bags of antibiotic and a bunch of other little stuff. My wife would take out the antibiotics  an hour before I would use them. At least that was the way it was supposed to work. A lot of the days it would still be cold. The nurses were there on an hourly basis so she’d have to put in my arm cold. And so first thing in the morning I would spend two hours with a cold IV in my arm. It’s only refrigerated cold not freezer cold. It was put in through this thing they had in my arm that had three ports on it. One is for the IV and another to take blood and I don’t know what the third one was used for. That had to stay in my arm the entire time they did this treatment.

At this time I was living in a house that was about 2400 square ft. So the master bedroom and bath formal dining room and family room and office were on one side of the house and on the other side of the house was the family room, kids room, their bathroom and kitchen. We were able to put a gate up between the two. This allowed my wife to wake me up in the morning  and move me to the other side of the house. This was so when the nurse came, she wouldn’t have to deal with our dogs. The only downside was to this was that I could not get to the front door. We were able to leave the garage door open to allow the nurse to come through the garage to get into the house. This worked great unless they send somebody new. They would come to the front door.We were unable to keep the house due to my illness. The new house we moved is less than 1000 square ft. The house is much easier for me to get around in. So I guess some things work out for the best whether you think they will or not.

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.

 

 

THE BEGINNING

When I was a child in the late 1960s I was diagnosed with a birth defect that place my two kidneys in a sack. The doctors were able to operate and save the kidneys. This is when I received hepatitis C. This is definitely the earliest I’ve ever received a whole blood product. When I was in my early 20s I had a good job so I receive yearly doctor visits. Doctors always said I was in good health and I had nothing to worry about. I had a wife and two kids and was living a good life . Then when I turned 35 I decided to get a  $500,000 of life insurance. The insurance agent said I would have to get a blood test. After I receive the blood test I was turned down for the insurance. They told me to go to a doctor and get a blood test to find out what was wrong. The doctor did a test to check for hepatitis C. It came back positive but the doctor says the first test is often wrong. So we did a second test and it came back positive too. This is the first time I’ve ever heard of hepatitis C. So I asked what I could do? They said they had a treatment of interferon and ribavirin. Which meant pills and shots every week for 11 months. So we tried it and after 11 months found out it didn’t work. Four years later  we tried the new and improved treatment for about six months. Once again it didn’t work. After all that I didn’t mind because I was still working and things are going all right.