2 transplants and waiting!

Sorry, long and my writing skills are not the best.

More about transplants

I received my first transplant in 1979 and it was definitely a adventure.
I swear they gave me gallons of steroids for months until I finally went home from the hospital. I would go in at first a couple times a week and wait for my blood results.
Then when they didn’t call I would call them and they always made me feel like I was bothering them. I finally got to the point were I didn’t think about rejection too much and went through what I would call a fairly wild young adulthood.
After I got married and had two kids my kidney began to fail. It was a slow process and it lasted through a failed transplant in 1994. I was given a bad kidney, not fun.
They took it out after 1 month and I was happy about that. I knew right away it wouldn’t work.
Well after about 6 months I got called in as a secondary but I ended up going home.
Another 3 months I got a call, went in and got a kidney.
Worked great! The thing with transplants is when they start working you feel this amazing energy and for me a whole new outlook in everything.
I felt like I can go back and be the father I want to my boys.
So from 95 to 2004 life was good. It was amazing the difference in medication from my first to second kidney. I think it was worth it. I completed my bachelor’s and eventually got a job at Motorola. Life was good. My job keep me very busy but yet I was able to asst. coach my son’s football team as well as being the director of the team affairs.
I spent every day working and every summer night pretty much with football, weekends I would have to be at the field every day. This was very demanding but my wife helped me though and we were able to keep that gong with very little help from players parents.
Well 2005 hit and my health went down the drain. My transplant had been slowly rejecting from 2003 through 2004 and by the end of 2004 my creatinine level was about 6 and I felt it was time to start dialysis.
I got a graft put in my arm (mistake) should have gotten a fistula, but I didn’t know the difference. At first on dialysis wasn’t bad. I still was making urine which if you don’t makes a huge difference. Anyway, while on dialysis a nurse poked a needle all the way through my graft and not long after had a aneurism the size of a golf ball on my arm and it was growing. Eventually I got that fixed, ie another graft right next to the old one.
That worked well until it got infected and almost killed me. Using it everyday when I started home dialysis turned out to be too much. Now I have a Perma-cath.
I guess to make a long story short; I wanted to get on the list.
One problem I had hepatitis C. I knew I had it for quite a while. I think I got it from my first transplant in 79’. When I spoke to my Liver doctor he said this would be a great time to take interferon and get rid of the hepatitis C, luckily I had a type that responds well to interferon. Let me tell you I didn’t know how much worse it makes being on dialysis, when you are on interferon it definitely knocks you down a few notches. The hepatitis C it self never really caused me that much discomfort over the years, but the doctors in charge of the list said I needed to be on the year treatment. Also they don’t give transplants to patients on interferon. Well it didn’t take long for my 95’ transplant to hurt so much I had them take it out, bye-bye urine. After a few more months my 79’ kidney started to bleed. After going blood for a couple weeks I had that kidney out. My first year on dialysis was horrible. I couldn’t put on my clothes in the morning without being exhausted, in and out of hospitals terrible…
My hemoglobin was as low as 5 after that second nephrectomy I was a the bottom of my barrel. To make matters worse my youngest son was only five and I couldn’t even pick him up anymore. I went from 210 lbs. to 150 lbs. in a month. My muscle I worked had on every day before was all gone. I looked like a skeleton. Finally, my year of interferon was up and I started home dialysis and that’s when started feeling better. I am far from the person I once was working around the clock but I can do most everything I want and control my dialysis which I find is the best thing that can happen to someone on dialysis.
As far as list my brother stepped up and said he would give me one of his kidney’s.
I had my sister and a brother in-law that got tested. I was surprised I didn’t ask anyone to get tested they just stepped forward. My brother and I are a good match. They weren’t sure if I needed any anti-body therapy or not yet, but as long as viral load from hepatitis C remains non-existent, which it is now, I can go forward with transplant testing with my bother. The only bad thing now is I have to wait 6 months to make sure my hepatitis C
is gone. If it comes back before I get transplanted they would want me to go on more treatment. I don’t know if I could.
I feel like I’m waiting for the other shoe to drop.
I didn’t know how I would feel about getting a Kidney from my brother, he also has a family.
For me the chance to get a life free from dialysis and to feel 100% better I can’t wait!
I feel kinda guilty to have to put my brother through so much. But he wants to do it.
To me pretty much all I know is life with a transplant. Medications get more complicated and expensive but other then that my life with transplants was about as full as any normal person. I think having a great, great wife and 3 sons it pushes me more in life than anything else. They want me well again and my wife is already planning our cruise to Alaska. “No Machine included!”. For me the only life I look forward to is with a transplant. Don’t get me wrong Home dialysis is the only way to go. Nxstage, love it.
But I still dream about the days without it.

Transplant 79’ 95’
Dialysis 2005
Home dialysis NXStage
2/06 To present.

My goodness, you write alot! :o

Indeed you’ve gone a rough ride there and seems you did quite well in that gun battle! For me kinda feels like beeing Wyatt Earp or Doc Holiday battling through the streets of TombStone! :lol:

Anyway, I would have to admit that I also contracted HepC somewhere between 1979 and 1990s…all those transfusions before EPO was ever out…

I did do the Inteferon therapy for 6 months and was the worsest experience I ever had in such a treatment! That stuff literally changes your personality and causes somes crazy mental madness… :roll: I couldn’t continue another 6 months with it…

However, am very glad am at home. I can breathe now… :smiley:

Hi Bruce,
Thanks for sharing your story. Would like to ask you, what would you say is the difference in how you feel with daily dialysis vs transplant? Do you do short daily txs with NxStage or long nocturnal txs?

I do short daily Nxstage dialysis.
I do 6 tx a week and they last about 2 1/2 to 3 hours
depending on my flow rate.
I feel much better now but not as good as I felt with
a transplant.