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.
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.
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.
News of hep c cure
We make plans to go back to the big hospital so they could check to make sure that the hole from the tooth healed properly. While we were there we stopped by the liver department so they could check me out and tell me of any new information. They had great news of a new cure for hepatitis C. Right now it’s in a study which means that only certain people can get into. There’s about eight protocols that if you have one of them you won’t qualify. That’s okay. I have all eight. Things like I’ve been treated twice; I’ve had major surgery. I’ve also had major complications from surgery. So for right now though they are giving it to people who are in dialysis but have never been treated for hepatitis C before. If they don’t die or get sicker then they’ll be able to give it to me. If all this works out and they are able to cure my hepatitis C, I will be able to get back on the operating table. I will need a new liver and kidney. I have a good chance of qualifying for these things because I am still young enough and I have AB positive blood. This makes me a universal receiver. So if all goes well by the end of the summer I may be able to start the cure. They said if I get the cure it will lower globulin in my blood system which means I will have an easier time of moving around. Right now it acts like rheumatoid arthritis.
Teeth
The fistula is on the mend and I am still using the port in my chest. It has finally come time to go to the dentist and get my three teeth out. This will involve me going to the dialysis center at 5:30 AM. Then leaving for a 3 1/2 hour drive to go to the closest dentist that will still work on me. This hopefully will be the last time we will need to use the port my chest.
Once I get to the dentist the first thing they do is hand me a bill. After I pay my bill they will do the work. When I finally get into the dentist chair it goes like any other dentist would do. They numb you up and get to work. After that they go through the medicines and painkillers that I will be taking. Once we look at it, we know that I cannot take any of these medicines for painkillers. Then we talked to the kidney doctors to find out what medicines and painkillers I can take. They allow me to take the amoxicillin but in a smaller dose. This doesn’t last long because I start breaking out in little red dots and I am itching everywhere. So I finally have to change that medicine too.
After they removed my teeth and they tell me that the roots of one of the teeth was long enough to make it to my nasal cavity. This means I will be making a another trip back to the dentist. That’s when they will make sure the hole from my mouth into my nasal cavity has closed up. Now that they’re done the right side of my face is all bruised up. So I get all those great comments like: what does the other guy look like, why do you get her mad and who would you been fighting. Hopefully now that I have waited about a year and a half to get these teeth out everything else will go smoothly for a while.
Still trouble with fistula
Now the hospital had stitched up the fistula and had dialysis treatment I thought it was safe to go back to the dialysis center. On my next treatment I went and had the dialysis done. The only problem that happened was that a golf ball sized lump that appeared. There was also a little blood on the outside of the lump. Dialysis told me not to worry that it would go done in a day. We let it go for about a day but my arm kept getting tighter. My wife was nervous about my arm and sent me to see my primary physician. We were given antibiotic just to make sure it did not become infected. So finally we went to the hospital again to have the doctor look at it. We were sent to the ER room. She looked at how tight the skin was and before she could look away it started to bleed. She quickly tried to put some gauze on top of it to contain the blood. Once she touched it the stitches gave way and there was blood everywhere. This time it opened up even bigger than the time before. So once again they held above and below and stitched it up. The doctor said enough is enough. Tomorrow we will take you into the operating room and fix it right. They ended up giving me a hybrid fistula. This either means I have a fistula with a graft sewn in the middle or I get 50 miles to a gallon.
So once again I stayed in the hospital.(The fourth admit for this glitch in dialysis). For those of you who have a fistula you know they can’t run an IV in that arm. I’ve also had a lot of other treatments in my right arm. After all these days in the hospital and all the IVs and blood draws they’ve already run my right arm they were running out of space. They put a port in my chest so they could do dialysis treatment there. They were also able to take some blood tests through the port. This was an operation so they had to have an IV so for the third time in two weeks I had to have an IV in my wrist. My right arm was decorated up and down and on both sides with black and blues.
After they did the operation and I was home for a couple of days I tried to go bowling. Right-handed bowler with my fistula in my left arm so I thought I would be okay. During the second game my left arm started to bleed so I grabbed it to put pressure on where it was raining blood and called 911. Once again they took me to the hospital. When the doctor looked at it this time he said it was old blood. I’m not sure with old blood means but it did mean that the stitches didn’t give up or break.
There are a couple of lessons I and my wife learned from this roller coaster ride. Pay attention if your arm starts to feel or look different. If you are concerned, have a professional look at it. It could be an abscess or it could be a pseudo aneurysm. Bleeding from the fistula area is not to be played with. Call 911 and put pressure on it. Do not panic.
Trouble with Fistula
After one of my dialysis treatments a bubble formed at the bottom of the fistula. (It was swollen, sore and a little red). My wife was worried it had gotten infected. This looked very unusual to us so we went to the emergency clinic to have it checked out. They thought it was an abscess, but were unwilling to open it up because it was right on top of the fistula. They sent us to our local free standing emergency room. We would later be very happy that they had made this decision.
At the emergency room they did a sonogram of it to make sure the fistula had not clotted. While they were scanning it, the pressure caused it to open up a small hole. My wife mentioned the small drip coming from the site and we were told to just watch it while they waited for lab results. Luckily my wife noticed that the drip had made a large spot on the hospital gown. This got me a trip to the hospital. That’s where the vascular surgeon stitched it up. Since this is like an artery rupture there was no time to anesthetize the area. So they just grabbed above the rip and below the rip; applied pressure and stitched it up. This took about 3 stitches. The surgeon didn’t feel there was much to worry about and there really wasn’t that much blood loss so no transfusion was needed. They kept me in the hospital for three days. During this time they did dialysis and made sure the stitches were in good shape. (First admit to hospital for this glitch in dialysis).
I went back to the dialysis center to have them do it the next time it was due but they weren’t sure whether they could do it or not. I had to go back to the hospital; be admitted for one day and had my dialysis done by the hospital. (Second admit to the hospital for this glitch in dialysis).
Going back to the dialysis center to try again and they had a problem finding a location to stick the needles. After they infiltrated the top needle they asked me to come back the next day. Then they took out the bottom needle and it started to bleed so they applied more pressure. They applied so much pressure they ripped my stitches out. Then they had to call the ambulance to to come and get me to the hospital. That’s when I found out that most ambulances only have two people in it. One to drive in the other to monitor vitals. They needed a third person to hold the artery so I wouldn’t bleed out. So once the ambulance got there they called the fire rescue. Once the fire truck was there that gave them the third person to hold the artery. So the four of us rode in the ambulance while the fire truck escorted us to the hospital. That’s where the rescue worker handed me off to the ER nurse and she held my arm until the doctor came in. Then once again someone grabbed hold the top of the tear and the bottom of the tear and he stitched up the now larger tear. He said the fistula still had a thrill so it should be okay. I was admitted to the hospital for three days with the hospital did my dialysis treatment. I usually get dialysis three times a week but during these times I was only receiving it twice a week. That’s because one of the dialysis days fell on the day they stitched me and my levels did not become dangerously high. (Third admit to the hospital for this glitch in dialysis).
At this time, we were only half way through this roller coaster but we didn’t know this. It would have been nice to know but that would have taken a really good crystal ball.