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

 

 

MY pills

Some of the new sites I have joined have asked me what pills I take.  So I will try to give you a list of how, what and how often.

Synthroid  once daily either 150mg or 100 mg depending on the day. This is three pills or two depending on the dosage and this is for my thyroid.

Keppra  twice daily  500mg unless it is dialysis day then I have to take one after dialysis.  2 or three pills a day and this is to control my seizures.

For my blood pressure I take a couple of pills.  Toprol XL 50 mg each morning.  Clonidine .2mg three times a day. Finally Norvasc 5 mg daily unless it is dialysis day then it is 10mg.  So that is 5 pills.

My anti-rejection drug is Cyclosporine which is twice daily at 50mg.  This is 4 pills.

For my joints I take two types of pills.  Plaqenil 400mg daily and Medrol img daily.  This is four pills.

The vitamins I take are Vitamin B12 (1000 mcg daily), Zinc sulfate (220 mg daily), Vitamin C (500 mg daily) and Vitamin D (400iu daily).  This is 3 pills and 2 gummies daily.

And to make sure that all this will pass I take 100 mg docusate sodium daily. This is one pill.

This makes up a GRAND total of  21 pills and 2 gummies on the light days and 23 pills and 2 gummies on the heavy days.

Now there are those special days, when I have to go to the dermatologist or the dentist and I have to take 500 mg of amoxicillin, so add 1 more pill.

 

 

 

 

 

The Teeth

This week, after a 4 1/2 month wait, I was finally able to get in to the dentist at Shands Hospital. This was only the initial visit so all they did was look at my teeth. For that I had to pay $156. The answer they came up with is to wait for weeks then at that time I will take a blood test. If my platelets are above 50 they will extract the three teeth. I will have to stay in town overnight to make sure it’s not bleeding. The other option is that my platelets are below 50. If this happens I will have to cancel the appointment. Then make arrangements to be admitted to the hospital. This will mean that they will extract the teeth and keep me for 48 hours of observation. The only real problem I have with either one of these options is what to do with dialysis. If the numbers above 50 I will go into dialysis at 5 AM and get out by 9:30 AM. Then I’ll drive for four hours to get to the hospital where my appointment will be at 3 PM. If the numbers below 50, I will leave it up to the hospital to do my dialysis. Either way my wife will need to  take off work. Thankfully for us, her workplace is very accommodating for our needs. We will not know what days she shall have to take off until after the blood test. Hopefully Quest lab will be prompt in their delivery of the results. This still seems to be to be a lot of trouble just to remove three teeth.

This is the time of year to say thanks

It’s been just over four years since most of these things happened. Since is the holidays it’s a good time to look back and be thankful for all the things that have happened. I am thankful for my family who help me the most to get through this so far. I also am thankful for all the doctors who have worked with me so far and put me back together again. Because of them I still have a chance for a cure and the ability to return to a somewhat normal life. The other person who gave me this chance is the person and the family of that person who donated the liver that keeps me alive today. It took all these people to get me this far.

For the next step I will need even more help. I’ll need a cure for hepatitis C and then a transplant of both my liver and kidney. This will take even more help from my family and from my doctors. That also means somebody else will have to donate their organs. This is a hard thing to think about as somebody else will have to die so that I can live. How do you say thanks to the family that allows the organs of their loved one to save someone else. Before I knew that I would need a organ transplant. I filled out a organ transplant form. I was willing at that time to give up my organs to someone else if I passed on.  Once I found out about the hepatitis C,  I could no longer do that. They tell me it’s okay when someone dies of unexpected circumstances and that the best thing is that their organs help somebody else live. I understand that. and like  I was going to put myself in that situation but still how do you tell the family thank you. I guess the best way is not to abuse the organ and do your best to stay alive  for as long as possible so the donation doesn’t go to waste. In my case, I guess that means not missing dialysis or missing doctors appointments.  If it means enjoying your family every day and being thankful for what you have, I can say that I am truly thankful.

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.

Now the kidneys

Now another thing that hepatitis C took out was my kidneys. To prepare for when my kidneys would fail they needed to put in a fistula. A fistula is where they connect your artery to a vein usually in your arm.  The connection to the artery causes the pressure to build in the vein and the vein then gets larger.  So they first tried to put it in my left wrist but that didn’t work. So they had to go back in and reverse what they did with my left wrist and try further up the arm. Once they got it working around my elbow they had to move the vein further towards the center of my bicep. This would make it easier for them to connect me to the machine. Altogether it took about three operations to get it all done. Then we found out that it was in and working but not at the correct rate of velocity. So they went in one more time and put in a stint. So now whenever it came time for me to start dialysis I would be ready.

Things are pretty well going okay when all of a sudden I had chest pains. I went to the emergency room to have it checked out. They checked my heart out and found a pleural effusion. So they had to go through other tests to check the heart. I took a stress test and had several x-rays of my chest. This is when they determined I needed to start dialysis. This all happened around the Fourth of July. So when they started me on dialysis they told me I could not leave the hospital until I had a dialysis center that would take me. Since it was Fourth of July weekend there is nobody open who could take me. So for the next four days I was stuck in the hospital so that they could do dialysis on me.

When everybody came back to work after the holidays they said it would take a few days to get all the approvals. My insurance company is very nice.  They had given me a phone number where I can call to see if I’m approved for procedures and etc. So I called them, they said that everything was approved on their end. I told them of the problem I was having and that the hospital said it would take days to get out of here. They told me to call down to the nurse in charge every 30 minutes until they got me a center to go to. I did that for about 2 1/2 hours. Then they told me to stop calling they were going as fast as they could. So I did what they asked and I stopped calling. Instead I had my wife call every 30 minutes. By the end of the day they found a Center for me. So I was discharged that night and got to go home

New year 2012

In 2011 through rehab, I learned to walk and  to eat. It was a pretty good year. I was hoping the worst was behind and I still wish that today. I was in and out of the hospital with all the normal things transplant patients have to deal with.  Colds, stomach flu and etc that I needed help to conquer because they keep my immune system low.  What added to this was that my body had used up its reserves while I was in the coma and while I was gaining strength.  It took a hospitalist doctor to actually look at me as a whole person instead of as a liver transplant patient.

At the beginning of to 2012 things were going pretty well. Then on February 15 my speech was slurred and my blood pressure was way too high. They admitted me into the hospital and decided I had a TIA.  A TIA is a mini stroke. Little things like this happen now. Luckily my wife had noticed my slurred speech and got me to the emergency room.  By the time I got there,  I no longer had the slurring and I had never noticed that I was slurring my words.

There are things they don’t tell you you’ll have when you have hep c. I found out that I had rheumatoid arthritis or at least rheumatoid arthritis like pain.When you have hepatitis C, they can’t tell you one way or another. They first treated me with 4 mg of medrol. This made it possible for me to walk with a walker. Once again it was very hard for me to get in and out of cars or sit in chairs. So at this time my wife and I stopped going to restaurants or going to family functions.This is when we also found out that hepatitis C can attack your kidneys. Knowing that my kidneys were going to fail we proceeded with the procedure that would give me a working fistula. A fistula is where they attach one of your veins to your artery.  The pressure slowly causes the vein to expand in size.  This allows easy access when you have dialysis.  Just like all the other times the first time it  did not work. So we tried again and yet again until we finally got a working site. Then the site had to be moved to a better location which took another operation. The good thing  that happened during this time was that they gave me another 4 mg of medrol. So now my dosage was a total of 8 mg of medrol. This allowed me to walk without the aid of a walker. Once they finished with all the operations they wanted to drop me back down to 4 mg of medrol. So I asked if I could continue on the other dosage. They said this is a steroid and could do damage to my liver. I called my liver doctors and told them of my dilemma. They asked me if I wanted quality-of-life or quantity of life. I said I wanted to walk. With doctor’s permission I am still on 8 mg.

We have learned over time that you must learn to communicate with your different doctors, because they will very rarely communicate with each other.

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.

 

 

 

 

Thank You

I figured this would be a good time to say thank you. Thank you to the people who gave me a new liver. If it wasn’t for them I would not be here today. So all the bad things I tell you that happened to me are nothing compared to the good things that happened to me. Someone somewhere allowed their family member to donate a organ. I was blessed to be approved and received a liver transplant. If they ever come up with a cure for hepatitis C,  I am hopeful that they will put me on the liver and kidney transplant list. There are thousands of people waiting to get transplants. If you’re not willing to go through the things I tell you about then please take yourself off the transplant list. This will give somebody else the opportunity to live longer. If you’re willing to do the things I tell you about then I wish you the best. It’s a long hard road to get a transplant. But then again it allows you to live longer. You have to remember the end game while you are going through a long list of requirements. Also remember that somebody else had to die if you need a whole liver. So if you know that somebody died so you could live, please do with the doctors tell you to do.

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.