Hello Everyone, I am PeterPaul!

[PeterPaul]

Hello everyone! I am PeterPaul 29 years old guy, I spent more than half of my life on dialysis. My story started 15 years ago, when I was 14, with the usual simptoms: less urine, protein in the urine and edema, so I found myself at the child nephorolgy and after a biobsy it figuried out I have FSGS after 2 years of unsuccessfull medical treatment ( cellcept, steroids and a lots of other meds ) I started dialysis, my kidneys were removed. At this time I was a very bad shape, I puked every day at least 7 times, so I got a gastric endoscopy, it showed that I have something behind my stomack, between my organs. It was a tumor on my pancreas, not cancerous, but it caused, that I couldn't eat, The doctors said the Prednisolon caused this tumor, I was and I am still 170 cm and I was only 29 kgs after the surgery ( I was 17 ), but my appetite came back and I have normal weight since. Anyway I did this surgery and everything on hemo dialysis, with tesio catheter. After they made my first fistula I got on the kidney waiting list and very soon after half of a year waiting I got my first kidney, which removed 3 months after transplantation, because my disease, the FSGS came back on my transplant, it was a very hard time, I got depression and I was in a very bad shape mentally, basically I spent only a month without dialysis. It happened when I was still 17, after I got back the transplant list and I waited, I was 20 when I got my secon transplant, but everything happened like with my first transplant, FSGS came back again killed my kidney, surgeons removed and since than I'm on dialysis ongoing. I had 4 fistulas, 3 őn my left hand and 1 on my right hand which is works, but it is so big, that it have to end it soon and I will get a catheter, this is very sad, but I can't do anything against it. I have very good arteries, but scarred veins, because of the lots of infusion, that I got, when I was a child, so they can't make me an another working fistula. So this is my story, I'm on dialysis for 13 years now and I can't get a new kidney. I'm in a good shape, I have good strength I exercise as much as I can. I fixing computers, this is my proffession, so I can work too. Anyway I hope it is understandable, I'm from Hungary, so English is my second language. Have a nice day for everyone.

PS.: Do you think with chateter, with a good quality one, my lifequality could be the same ( not count, swimming in the sea and the obvious ones, which are impossible ).

[Paul]

 
Hello PeterPaul, welcome to the site. My sympathies for the hell you have been through.

(Sorry, with that screen name I have to ask "What happened to Mary?"* )

WRT "Do you think with catheter, with a good quality one, my life quality could be the same" I have had a catheter for over a year, only big problem is washing my beard as I have to keep the catheter dry and my beard is long (think "ZZ Top" but shaggier, well over four years long). Usually wash hair and beard together wearing a thick waterproof coat.

My biggest problem is not the catheter it is a leg problem (bones in one leg are like paper maché) and blocked arteries. These two have stopped me going on holiday for the past two years, if I had managed that I'd probably be whining about the catheter preventing me swimming, but other than that the catheter is not a problem.

------------

*Sorry, that joke refers to stuff that is probably before your time.

[cassandra]

Welcome to the site PeterPaul


 


Take care, Cas

[lulu836]

Welcome.  Catheter is not a problem.  Just keep it dry and clean.  I have developed an allergy to Hibbaclense, Bertadine and alcohol also medical grade tape and tegaderm but have a solution so no worries.

[kickingandscreaming]

 , JohnPaul.  You have been through the wringer.  I hope your luck changes for the better.

[OldKritter]

Welcome.

[Rerun]

Hi PETERPaul,

I'm sorry for the way things have gone for you.  You should be fine with a catheter.   Have they talked about a fistula in the upper thigh?  I will not do that but I'm 57.  You are so young. 

Keep us posted.

WELCOME, RERUN, ADMIN.