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.

Week Seven

Week Seven I have had some difficulties.  I went to the nurse practitioner and they gave me some type of breathing treatment.  As soon as they were done giving me the breathing treatment, I couldn’t do much of anything.  My legs  were hopping around uncontrollably and my arms were flailing around.   My mother-in-law brought me home and I went to bed for three hours.  I am not feeling much better but I have an appointment with my primary doctor next week.  Talk to you later.

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.

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

Removing the port

Now that the fistula is working properly it’s time to have the port removed. In some cases they do this in the office. In my case no procedure can be done in the office and must be done as an outpatient. So we went to the hospital where they told us they were running about 45 minutes late. If you ever been to the hospital before 45 minutes isn’t bad for waiting. They took me into the back room where they had me put on a gown and go over my medications and medical history. Then the next thing they have to do is start the I.V. in most cases this is done quite quickly. In my case the first nurse tried twice. The next nurse tried once. Then they called in the anesthesiologist he never misses. He tried once the arm and twice in the wrist then he gave up. They thought for a second maybe they would put an iv in my leg. Then they looked at my legs and remembered all the scar tissue and decided not to go there. Then they decided maybe they would go for the neck. Before they could do that the Doctor came in and said we don’t  need the blood tests and really don’t need the IV. Instead he would give me a local and pull it out in the preop room. So he told the anesthesiologist to standby just in case and he did the procedure. The whole procedure took about 10 minutes. Since there is no anesthesia there was no real recovery time. My wife stayed in the room with me while this was going on so as soon as the procedure stop bleeding and they were able to put a little glue on top. I was able to go home.

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

 

 

Dialysis centers

I had to start dialysis.  I am lucky there are two dialysis centers in my area.  There is one about 25 minutes away from home and the other which is about five minutes. Of course I had to start dialysis around the Fourth of July holiday and I got assigned to the one that was further away from my home  with the promise that when an opening became available they would move me over to the closer one. If you get sick around the holiday you will find out that everything is not working like it should.  It took longer to get me out of the hospital.  It took longer to get my acceptance into a dialysis center so I could get out.  This is how I got assigned the dialysis center further from home.  They answered the phone while the other center didn’t and I wanted out of the hospital.

Now that I’m on dialysis, my medicine schedule had to be changed. You would think this would be simple but it was very difficult for my wife to find out which medicines would stay in my system and which medicines would be pulled out of my system when I went on dialysis.  At the hospital, they didn’t know so they would hold my medicines until after dialysis.  It all depends on the size of the medicine molecules when it is in your system and whether or not it was too big to go through the dialysis filter.   This became very important because the medicine I take for the arthritis I have to take after dialysis. I also have to take all vitamins after dialysis but my anti-rejection medicine I can take.

I was patient for about a month waiting for them to reassign me. It’s was then I couldn’t wait anymore. It seemed that I just could not explain to them how much pain I was in for the 25 minute ride. So I called the other dialysis center and asked them if they have any openings. They said they had openings but only on third shift. I said great I’ll take it! Then I explained I was already at the other dialysis center. They said they couldn’t transfer me over and  I have to wait for opening. So I brought my grievance up with the social worker and told her what happened. She agreed it wasn’t right and finally had me transferred over to the other center.

Once I was over at the other dialysis center for about a month they did finally opened it up. For everybody. They were just waiting to go to a six-day schedule instead of a three-day schedule. So now they have some people come Monday,Wednesday and Friday and the rest of the people come Tuesday, Thursday and Saturday. My schedule is now at 5:30 in the morning on the Tuesday Thursday Saturday.That at least gives me the rest of the day to get other doctor appointments done.I have my wife drop me off in the morning. I’ve been told I have to be there at 5:15 so they can put me on the machine at 5:30. I’m lucky if one day a week the attendant is there before 5:30. My dialysis is for 3 1/2 hours so that I’m supposed to be disconnected at 9 o’clock. They have the next round of patients come in around 9:15. So when they put me on late in the morning and it’s time for me to come off in the very late morning  or we are stacked on top of each other.

When this happens, they pull my needles. While I’m holding them, waiting for the bleeding to stop. They put on the next patient. So if the next patient goes on easy I will only be holding for 10 or 15 minutes. If the patient doesn’t go on easy, I might be holding for 30 to 45 minutes. This might not seem like much but after sitting in a chair for 3 1/2 hours it can seem to take forever.

What was going on

The Cryptococcus is dead but its effects continue.

The pressure in my brain from the swelling from the damage the meningitis caused was not going down.  The doctors decided to treat this with a third ventriculostomy. This all happened on September 17. I’ve been told this is where they drill a hole in your head and put a passage from one side of the brain to the other. On October 8, I had to two Grand MAL seizures when the gauges monitoring the pressure in my brain were removed.

On October 12 they gave me a trach to wean me off the ventilator. My spouse had been worried because they would keep trying to remove the ventilator and then replace it when they would become worried I would “forget” to breathe.  At this point I was still not quite in a coma but not really responding either.

All through this time, I was a mess of tubing.  I had had chest tubes to drain my lungs of fluid.  I had a feeding tube that just refused to stay in place and when it did, the techs would accidentally dislodge it when I had MRIs and CTs.  This was also addition to the drainage tubes from the ventriculostomy and gauges.  Suction tube for the ventilator along with all the IV tubing and the tubing for my waste products. They are able to remove the trach by October 27. They had slowly made the trach smaller the more aware I became.

The next step is rehab.

WHAT THE FAMILY WENT THROUGH

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.