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

 

 

Outpatient rehab

Now I am at home with my family. Three times a week I have to go to a rehab clinic. This time at least they will teach me how to walk.

You start each session by bicycling in a stationary bike. Then you lift weights with your legs. You’ll learn how many different ways they can add weights to your legs and make you bend. When you go home they will give you bands to exercise with. It took me about three months before I was able to take my first steps. When you take your first steps they count how many steps you take so you can take more the next. I believe I was up to about 12 steps then they told me I had to stop.

I needed a hernia operation.  I had needed it before the liver transplant. They could not do the operation with all the other things going on. But now that I was doing so much better they decided I could handle the operation. When you get a hernia operation there is no heavy lifting for three months. The only way I could stand up was the lift myself up with my arms. So for the next three months I was stuck in my wheelchair again.

Once those three months had passed we had to start all over again. This time they began again to get me walking longer distances. Kinda. What I mean by kinda is that on occasion I tripped. One time my son took me to see my kidney doctor. On the way out of the doctor’s office I told him to go get the car because I only had a few steps to the bench. That is where I was going to sit down. But instead of sitting down, I fell onto the bench and then onto the ground. When my son came with the car a minute later, he got to see me on the ground surrounded by people. When I was taken to the emergency room, they gave me an x-ray. The x-ray said that I broke a rib on the right side. There was another time my father-in-law took me shopping at Lowe’s. We were just there to get some things for the house. Unfortunately we had just left rehab and I had to go to the bathroom. I went to the handicap bathroom and locked the door behind me. Afterwards my father-in-law would never let me forget this. This is probably the maddest I ever made him. This was because when I tried to transfer myself from the wheelchair to the toilet seat I fell. I fell so hard I had to go to the emergency room. But first, he had to get the stall door open. There’s no room in their stalls the climb under. Once he got me out and took me to the emergency room they did a CT scan. They found out that I had a fracture of the right transversal process at L2 and L3 in my back. Or in other words I broke my back.

 

 

 

 

Still going

Now I’m home with my family can take care of me and get my weight back. This last all away until December 26, 2009. At that time I have a seizure of absence . So they rushed me to the hospital where they do a CT scan. After that they up the dosage of both of my seizure medicines to their highest dosage to keep the seizures under control.  I would have visits to the hospital over the next few years as my brain healed and the seizure medicine would be come toxic.  They would slowly wean me from one seizure medication until I am on the small dosage of Keppra that I am currently on.

Finally I can go home and stay for a little while. On February 9 they order a kidney biopsy, my kidneys become more and more of a problem later on. By February 11 it is decided to once again send me to a rehab to teach me the things I need to know.  By this time my family had managed to bring up my weight by about 12 lbs.  (My wife has a great shake recipe that is sure to get weight on you.  If you would like the recipe just leave a message and I will post it.)  Between the time my wife removed me from the first rehab and February 11th, I had had a visiting nurse once a week to my house to check on my condition and weekly visits from the home nurses for occupational therapy, physical therapy and speech therapy.  I hated the speech therapy.  All my muscles had disappeared including the ones in my tongue.  This was causing me immeasurable problems communicating with anyone other than family.  The speech therapist would work on reminding my mind of words I use to know while I would do the dreaded “push on a spoon with my tongue” exercise.  I was so frustrated at this time.  People couldn’t not understand me when I talked; I couldn’t physically do things like stand on my own; and my stupid tongue couldn’t push on that spoon.  Each therapy was greatly needed at this time but they always left me exhausted and cranky.

This is where I have to thank each of the wonderful ladies for putting up with my crankiness at myself; my son for being my therapy buddy; and my father-in-law for making sure I had help to eat the lunch my mother-in-law would make. Finally to the home nurse who told my wife that although when she first brought me home, her nursing team had not believed home had been the correct decision.  The progress I had made while at home and the weight I had put on had proved my wife had made the right decision.  To this day my wife still cries when this time is brought up because this had been the first person outside of family that had told her she had chosen correctly.

This new rehab was much closer to home.  After the last rehab, being able to see me daily was one of the main concerns my family had.  This rehab had to work on my speech and my motor skills. The big thing they had to teach me was how to get out of bed safely and sitting  in my wheelchair. This was kind of neat. They would turn me on the bed and have me put my feet on the ground. Then the nurse would put her knees against mine. This is so my knees would not buckle. On occasion I would miss her knees then she  would have no choice but tackle me back into the bed. On the days that she could get me into the wheelchair we would go to a special room that would have a normal bed and a normal bathroom. This is so when I went home I could get into my bed and get into my shower chair. Let me tell you it is a weird feeling when you get into a shower with the nurse and she has to wash you. I know some people only dream of this but I’m not one of these people. The other thing you have to practice at is getting out of the wheelchair and into a car. For this to happen my wife had to drive up to the rehab center; put me in the car; drive around the circle and get me out of the car. All these things you take for granted because you are used to doing it every day. But when you have to learn how to do it all over again it’s no fun.

The other thing that I had to do at rehab was eat. I was allowed to eat just about anything as long as I eat a lot of it. My father-in-law would come up at lunchtime to make sure I ate a lot of it. My father-in-law was a great guy but he could very determined. He was determined to make me eat. He did everything he could to get me better. When he got sick years later, I felt like that there was very little I could do to help him.

rehab

Now on November 9 they did release me from the hospital and sent me to the hospital’s rehab. They told my spouse that their rehab would be the best for me since they would have all my records and know everything I had gone through.
Once again we were hoping the worst was over and things would get better. They did for a short while and then they didn’t. November 18, I had a MLF stroke at the rehab center. My physical therapists noticed that I was in physical distress and told the medical staff at the rehab. Nothing was done until my daughter came to visit later that day to check up on me. She and my spouse raised enough ruckus that I was sent to the hospital.On November 25 they did a brain biopsy to check on the Cryptococcus. No active cryptococcus. Just scar tissue.  The hospital staff then told my spouse that the only rehab that would take me back was their rehab.  Against her better judgment and backed into a corner, she agreed.

I went back to the hospital’s rehab to continue with physical therapy, occupational therapy and speech therapy.  At this point, I was down to 134 lbs and my body just had no reserves.  When my spouse came that weekend the therapists all told her that I was making process and doing well. She even went through therapy with me and watched me walk 81 feet with a walker.  She went home thinking that she had made the right choice.

Two days later my in-laws had done the long drive to do their weekly check on me. That is when they found out in a week, I had lost 13 lbs.  This should not come as a surprise to the medical staff at the rehab.  I was weighed daily, but this was the last straw for my spouse.  The rehab had been giving me medication for nausea just before feeding me.  You would think that was great but the medication would put me to sleep.  I had not eaten a whole meal in they didn’t know how long.

My spouse called my liver transplant coordinator to complain. Unknown to her, the rehab had held a quick meeting and then called the same coordinator that I needed to go back to the hospital or into a nursing home.  They said that I was unable to progress because of my much weakened state.  When the coordinator told my spouse, she then told them she would be taking me home.  The hospital was not for this.  While they could not admit me to the hospital because I was not sick, they did not want to let me get away.  My wife lost it.  She informed them that they would have me ready to go, with my medications immediately because she was taking her 121 lb husband and going home with him.

December 24th, I came home.  The last time I had been in my own home was the night of July 28th.  I came home much differently than we had ever thought I would.  Instead of walking through the door, to start on my way to the rest of my life, my family rolled me through the front door.  I was unable to move on my own. At 121 lbs, my body had pretty much ate away all my muscles.  I was wrapped in bandages from my knees down to protect the open sores.  I wore a diaper because I had no control over my bowel movements.  My mind was still healing from the damage from the meningitis and the stroke.  My connection to the world outside my head was very tenuous at best.

My wife and I spent that Christmas together a little differently than we had planned.  With me in bed and her trying to get food in me while taking care of me physically and a visit from the home nurse to check on my condition and change my leg bandages.  After seeing my condition the home nurse would suggest to my wife that rehab would be the best place for me.  My wife calmly informed the nurse that the reason I was in such a state was because of a rehab.  After the nurse left, she then cried while I lay there unable to do anything.  This would not be the first time she would wonder if she had made the right decision.