Week two

Week two has not gone as well as week one.  Luckily my joints still feel pretty good.  My arm strength has seemed to stayed.  My legs seem to get weak when I stand on them for any length of time.  They feel like I am walking in mud and they don’t feel as “solid” as they use to.  I don’t know if I am weaker from the medicine or just not use to feeling the joints in my legs working that well.  I am having trouble sleeping at night.  I get up about every night and move to the couch so I can lay in a recliner with a fan on.  I am not tolerating temperatures very well.  I go from cold chills to heat sweats.  The other problem I am having is that my skin is getting really itchy.    I am still glad I am taking the medicine and from what I hear my numbers are getting better.  Talk to you next week.

The cure has arrived.

The doctors have told us that they are willing to give me a treatment for the Hep C.  This new treatment is called Viekira Pak by Abbvie.  They brought me in and gave me the prescription for it and tell me that as soon as I receive the medicine I will have to come back.  Then they would show me how to use it.

At this time, I figure I am on my way and everything is going smoothly and I will have the new treatment.  Three weeks later the pharmacy finally calls and all I have to do is come up with my copay.  I have private insurance and Medicare A and B.  So I was hoping the copay would be reasonable.  What it turned out to be was over $2000 a month for six months.  They would not be able to send the medicine until they received the copay.  So my wife and I were trying to figure out where we were going to come up with this money.  The pharmacy then said that if we couldn’t come up with the copay that they might have another way.  Thanks to a grant from Patient Access Network foundation we are getting the medicine.  They gave us a $15,000 grant to pay for the medicine.  I thank them greatly for this and we should be starting the medicine soon.

 

 

The right arm working. What next?

The right arm has been working but they had to clean it out. This is a small procedure done at the hospital. They did then once on the left arm. Hopefully this one come out better. There also is talk about a cure that I will be able to take but that will not be until 2016. They talking about some time in February then we will learn what it is.   The procedure is called a fistulagram and really wasn’t anything to worry about.  I was in and out same day.

Getting the teeth taking care

I finally found a local dentist that would remove my  four bad teeth in my mouth. It took a blood test to make sure my platelets were high enough. In the end they said they would remove the teeth. This doesn’t sound like much but I’ve been turned down by University dentist and a couple of local dentists. After the procedure I bled for about four days. I even had to cut one of my dialysis treatments by a couple of hours because I couldn’t take the blood rolling down my throat. Finally at the end I found it easier just to keep my mouth shut. That means no talking; not much eating; and very little to drink. Once I did this the bleeding did stop. The bleeding was the only real issue they had with taking out the teeth hopefully I will not have to to have any other teeth taken out any time soon.

Being forgotten

This week at the dialysis center the Kidney doctor came in and asked me “why don’t you get a kidney transplant”. I told him that I was waiting for Shands Hospital to tell me whether or not I can get a transplant before or after I received treatment for my hepatitis C. He said check in with them because it would be safer with a transplant then continuing on with dialysis. So my wife called Shands for to ask these questions. That’s when we found out that the person who is taking care of our requests had retired. The nurse practitioner  who writes up my labs so they can be taken had left the hospital. She asked who was taking care of my case now? They told her that my case hasn’t been reassigned as of yet. So we asked when it would be reassigned? They didn’t know when but  would get back to us as soon as they knew.

Still waiting for a call.

Now the right arm

When they first started to use the right arm the whole arm bruised up. Both the surgeon and the kidney doctor looked at my arm and said it was up to me when I wanted them to take the port out? I said I wanted out so we took the chance and had it removed. Luckily after a couple weeks the bruising went down and during that time they were still able to stick the needles in the bruises and do my dialysis.

I was worried about how much my bowling game would be affected now they use my right arm. So far there hasn’t been any bleeding issues.  The bowling alley gets a little nervous but everything seems to be working okay. So the dialysis going good and the only other problem I have right now is my foot.

The doctor has decided that I needed to lose weight. The first thing she did was take me off all my candy. This brought my sugar levels into the normal range but did very little for my weight. So after that she took me off bread. This work quite quickly at lowering my weight.  I’ve been losing about a half a kilo week. It’s been a strange because now I still eat the turkey slices that I eat before but now they’re just rolled up. I still sneak in toast for breakfast and on occasional bun for a hamburger at night.

Now with my foot, they had to come up with a cushion under my toes. The way my toes are bent when I walk has caused  is a small hole to appear where one of my toes meet the floor. By putting a cushion under the toes it takes away some of the bend and the skin doesn’t break open. I been fighting this foot problem for about the last four years. We are not winning this battle but we are sit fighting it.

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 a basal cell

I’ve had a small sore on my right leg for the last four years. With everything else settling down I was finally able to go to the dermatologist and have it checked out. This is about the sixth time I’ve been to the dermatologist to be checked out. This time he took a biopsy and determined it was a basal cell.

When they find a basal cell they bring you into the office and do a procedure where they take off one layer of the sore and put it under a microscope and see if there’s any cells on the edge. If there are basal cells in the cut, they cut little more until they get all of it. This all started at the size of an erasure by the time they decided to do something with it was the size of a nickel. The size that they removed was about the size of a silver dollar. The sizable hole they left behind was too big to be sutured closed. So that means they have to do a skin graft to close the hole.

They took the extra skin from the bottom of my right bicep. They say everybody has extra skin under their biceps. Until the graft took hold I would have to stay off my feet. This would take about 10 days. The biggest problem I had during this time was dialysis. During dialysis they keep a blood pressure cuff on you and take your blood pressure every 30 minutes. They can’t use my left arm because of the fistula, they can’t use my right arm because of the graft,they can’t  use the right leg that’s where they put the graft. So all that was left was my left leg.

My legs are not in the best condition and when they take blood pressure from your legs it is higher than when they take it from your arms. I also usually run a little high in the blood pressure department. After the 10 days they took off the bandages and determined that the graft was growing well. I thought this was going to be great and I was going to be all done and  just let it finish healing but oh no. They are going to be sending out a nurse to change the bandages every couple of days. Then in about two weeks the doctor will take another look and reevaluate at that time. That means I can walk around and still bowl on days as long as I can get my foot with the bandage in a shoe.