WHAT THE FAMILY WENT THROUGH

Posted on October 1, 2013 Written by Leave a Comment

We got called for the liver transplant late in the night.   I ended up driving much too fast to get to the hospital.  They took us to a room where Jerry had to get prepped for the surgery.  They then took us to the waiting room outside of surgery and my daughter and I stood next to Jerry.  We made conversation trying to past the time.  We saw our surgeon who told us they were going to go ahead with the transplant.  Then began the forever wait.  Sitting in the waiting room and waiting for the call from the surgical nurse to tell us how things were progressing.  Being thrilled to see the surgeon walk in to tell us how well things went.  Finally being able to relax to see Jerry in Surgical ICU for a few minutes and seeing for our own eyes he is okay. LESSON LEARNED: You can go for a couple of days with no sleep and very little food and still function.

I remember between seeing Jerry fully awake after surgery and before they took him back down to ICU with the seizures from the meningitis feeling things were not 100% right.  We did bring it up to the doctors watching Jerry, but it was dismissed as recovering from major surgery and the liver not being quite awake.  LESSONED LEARNED:  Doctors are people too.  If you are a patient with a bad liver, they see you as a LIVER patient.  It is extremely difficult for them to see you as a whole person because they have that emphasis on that one part of your body.

I got called by our daughter when Jerry started with the non-convulsive seizures.  I was totally unprepared for this.  I had been talking every day to Jerry and we were planning on him going home that weekend.  I got there in time for the meningitis to start short circuiting his brain.  He was having problems talking and his body was not reacting to stimuli.  We were trying to talk to each other when his brain could take it no more.  His last word to me was Why?  LESSON LEARNED:  Sometimes things will haunt you even years later.

The day they figured out Jerry had meningitis, a neurology fellow came in and examined him; asked us questions and left.  An Infectious Disease fellow was in the room going over the results of tests they had run.  Near the end of the day a tech came in and threw us out of the room.   My daughter and I were upset.  I was upset because they didn’t let me say good night and my daughter was upset because neither doctor had told us anything all day.  It ended up me making a call to a phone number I found in the hallway and complaining about the situation and sneaking my way back into the ICU pod and confronting the doctor before we found out why we had been throw out and what the Infectious Disease doctor was there for.  LESSON LEARNED: When going into a new situation, find out who you should speak to if you are not receiving the care or information you think you should.

This began the hardest days. Talking to Jerry but not getting a response but still talking because they say that people in comas can hear.  Never saying the word coma because I was too afraid.  Answering family and friends and trying to tell them hopeful things without telling lies and having them respond in ways that just made you feel worse.  Phone calls and unending papers to give permission for the unending lumbar punctures and MRIs and CTs.  Being told the possible side effects so often that when they called you respond by telling them…Yes, I give permission and the possible side effects of the procedure are…

I don’t want it to seem that it was all bad.  There were bright spots like when the surgical fellow saw me at the entrance to the hospital and stopped on his own time to tell me  that he always knew when I had been with Jerry because Jerry’s vitals would be stronger.  The hospital social worker who met me in the hospital to sit with me and tell me I was doing the best I could when I really needed to hear that from someone other than family.  Having a nurse who was just wonderful to Jerry and who took the time to tell me that little something that gave me hope or showed that she hadn’t forgotten Jerry was a person and not a piece of furniture.  LESSON LEARNED: Concentrate on the fact that you moved forward even if it was just a baby step and don’t forget to email or write the hospital or company when you get that special person.

After the meningitis was dead, the swelling in his brain caused problems and they wanted to operate to improve the drainage of fluid from his brain.  That is when I found out that brain surgeons can have problems talking to non-medical people.  Jerry came out of the coma with the improved brain drainage but they were worried about taking him off the ventilator.  I was more worried how much damage they were causing removing and putting back the ventilator each day.  I did some research and suggest to the ICU doctor that they put him on a trach to help wean him off.  Totally surprising the doctor because he had been coming to me to suggest the same thing. LESSON LEARNED: If you can research, it will make difficult decisions less scary.  Internet, nurses, people who have gone through this before are all good sources.

When Jerry was released from ICU, his brain was still healing.  He would call me and tell me that the nurses had stolen him and he didn’t know where he was.  I would talk to him trying to keep him calm while calling the nursing station to ask his nurse to go to his room and reorient him.   Jerry would be describing where he was (which was totally different than the room I knew him to be in) and I would hear the nurse come in and ask Jerry if he knew where he was.  He would respond that he was in the hospital and just that was enough to bring him out his fright.  It got so bad that I had to convince him that I had hired two shifts of two bodyguards to watch over him day and night.  LESSON LEARNED: When the patient is not in their right mind, you do what you have to so that they feel safe.

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What really happened

Posted on September 28, 2013 Written by 3 Comments

On the day I had been scheduled to leave the hospital, they diagnosed me with Cryptococcus meningitis with continuous,non-convulsive seizures. This diagnosis was August 3, 2009. This is a fungus that attacked my brain while my immune system was down.  They did tell my family that they had not seen this infection in 20 years.  They also mentioned that it was a good thing that it had attacked while I was in the hospital and not at home.  My family tells me that they did not find this comforting as I slipped into a coma that I would stay in until around October.  This also started daily lumbar punctures and many, many MRIs and CTs .Now I can only tell you what people have told me that happened during this time.They were able to kill the Cryptococcus by August 17, 2009.  This was done by IV. They gave me a cocktail of 3 different fungus killers plus lots of saline to try to protect my kidneys from the fungicides.This doesn’t work in the long term because now I am on dialysis.

The kidneys and liver are what clean your system of all the things you don’t want to building up.  At this time, my new liver was not functioning at 100% because it was still trying to figure out its new home in my body and my kidneys were doing their best to do everything.I have a strange rash on my legs. It  makes my lower legs have a reddish tint. I was told that I have this because my body was not able to get all the  dyes from the CAT scans and MRIs out of my system.

During this time they fitted me for a halo. I would like to say they’re getting me ready for heaven, but really it’s a medical device they attach to your head to prepare for brain surgery.Now you have to remember that I cannot make any decisions at this time. I am in a coma. This is when my wife and daughter had to make all the decisions for me. All that stupid paperwork we filled out in the beginning came in here to save my life.

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WHAT HAPPENED?

Posted on September 25, 2013 Written by Leave a Comment

I thought this was going to be the end of my troubles. I was supposed to get the transplant and be able to go back to work. I was wrong. In the four days after the operation we remove drainage tubes and got me back on my feet. This all happened in July  2009. I don’t remember the rest of 2009. This is when the medical surrogate form took over. I was no longer conscious or able to make decisions. So the only way they can carry on with my care was with my wife and daughter.

This is when I entered another world. This world is were my brain tried to explain what was going on to my body. I was having terrible dreams about my wife cheating on me. I believe I was dreaming about this because for the first time in 22 years I didn’t see my wife on a daily basis. This was all arranged before hand that she would go home during the week so she could go to work. Then she would come back on the weekend and I should be able to go home.I also had dreams that my daughter killed my dogs. What really happened during this time was we had an older dog that had to be put down. This was her dog when she was a child growing up, so we thought it would only be right if she was there when the dog was put down.Then I dreamed that my in-laws were no longer allowed to see me because they tried to sneak me out of the hospital. I believe this dream was once again trying to explain why I wasn’t going home, when I was told I’d be going home on the weekend.

Those are the dreams I somewhat have an explanation of. The other dreams I have no idea why dreamed of them. Those dreams were about people trying to kill me or take me away. My wife even try to settle me down by telling me she hired security guards to protect me. None of this fit into my timeline because I was told on Friday that I would probably going home over the weekend. Nothing made any sense and everything hurt and there was no way out.

The place I talk about I still have nightmares about today. I wake up in the middle of the night trying to scream. I have found it easier to try not to fall into a deep sleep. This way I always have a way out unlike before. I do think it’s weird that I’m a grown man that’s afraid of sleep.

 

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A Miracle

Posted on September 22, 2013 Written by Leave a Comment

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.

 

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THE LONG ROAD

Posted on September 17, 2013 Written by Leave a Comment

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.

 

 

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YOUR BRAIN ON AMMONIA

Posted on September 14, 2013 Written by Leave a Comment

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.

 

 

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Disability???

Posted on September 12, 2013 Written by Leave a Comment

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.

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