long-term dialysis

[kevno]

well just past my 22nd year back on dialysis. The 21st year was one of the those years where I had very little done to me. Lets hope this year is the same. 26th May 1988 is the day I had to go back on dialysis. My Transplant lasted nearly six years. Then there was the five years on dialysis has a child just one long nightmare, six hours three times a week, keel kidney 5ft long, 2ft wide and 1ft deep. Had my own socket set to make my kidney up. started on dialysis at the age of ten. Transplanted at 15 years back on at 21years old.

I do know a few long term renal patient, it seems to me it is the way you can handle all the things that get in front of you. You have no choice but to keep going. I have spoken to a few new patients. I know they find it hard. So little to drink the diet the operations (fistula or Tube for CAPD) I have no real idea how they feel. Thats why i have tried to, not help them, try to understand what it is like for a new patient. Plus of course told them to come to this site.

I do not want this topic just to be about me. How do you feel about dialysis? I know dialysis takes over your all life if you let it!   It once did for me when on CAPD changing those bags 4 times a days. I know I have zero chance of a transplant, So here's to the next 22 years 

I suppose the title of this topic was a bit miss leading, But it is me Kevno

Yours always

Kevno

[Zach]

Cheers from one long-term dialysis patient to another!
 

[kevno]

Hi Zack

I have got to admit dialysis is a lot easier now in the 21st century than it was in the 70s/80s the kidneys where less efficient in those days. So has a child of ten I had to spend 6 hours on the machine it was a Lucas machine with a keel kidney. Being held down with the nurses, my arm strapped to a board. Nowadays they can not do such cruel things to a child. But in the 70s it was anything goes to keep you alive. I had the transplanted kidney for nearly six years. Never felt well with it, i was told from the start it was going to fail. Now the way I feel about a transplant. It is just another form of treatment. Some are more lucky than others. Not to bitter, just know now this is my live. A machine 3 times a week. Plus I try to make the best of the time I have off the machine and out off hospital. My attitude as changed over the years. Just take each year in its turn.   

[cariad]

Hiya Kevno, I'm a former dialysis kid, but can only imagine how rough it must have been to be on the machine for that many years as a child. I hate dialysis, and I was only on for about a month. I got extremely lucky and had a transplant that lasted 34 years in 1976. I used a shunt (had a fistula built, but it was never used).

I'll toast your next 22 years, and the 22 after that!

[kevno]

started dialysis in early 77 had a loop shunt formed, a vein from my leg grafted into my arm. In the 70's a fistula  was called a shunt. Now a shunt means different things. They did try to save my one kidney from 72 but it was too badly damaged from reflux.

[cdwbrooklyn]

I did not have kidney failure as a kid but my kidneys became very weak at age 32.  My blood pressure was so high it damaged most of my veins causing my kidneys to be very weak.  I’ve been on D for 11 years now.   Sometimes, I can’t believe I’ve made it this far.  However, I’m very blessed that I am still doing well.  I thank God who deserves all the glory and honor that nothing bad really developed.  I’m praying that God will allow me to live at least 50 years longer according to His will.   

Although, I don’t like D, I am happy that I am able to get the help my kidneys need.   Without it, I would not be here.  It’s hard seeing people receiving kidneys (although I’m very happy for them) knowing that I will be on D for the rest of my life.   I try everyday to think positive as I will do positive things.  I’m doing well on D so I really can’t explain but most of the times I wish I was not on it.   

Anyhoo, I have my friends and family for support.  Also, I’m always trying to live to the best of my ability.     

[Rerun]

        Cheers Kevno! 

[okarol]

  Wow that's a lot of dialysis!

I have added you to the "What is the longest a patient has survived on dialysis?" thread http://ihatedialysis.com/forum/index.php?topic=9672.0

Best wishes for many more years! Thanks for the update. We miss you around here! 

[glitter]

KEVNO!! So good to see you my friend!    Here to the next 22 years!!   

I am so glad you had a good year, without a lot of procedures, maybe I will help you wish for this one to be uneventful as well. Unless its a good event of course!

[kevno]

I always keep looking on the site, maybe not has much to say nowadays Glad to see the two granny's of the site are still posting Rerun and kitkatz to late  

[sullidog]

I'm 26 and went on dialysis May 20, 2009. So it's all still kind of young for me, but I'm on the list!
I have my ups and downs, but I try to follow my diet and stuff so I feel the best I'm able to.
Troy

[kitkatz]

I am behind you Kevno and Zach at 11 years - six months.  But from one long lasting dialysis patient to my heroes. 

[Bajanne]

I love to hear about people living long on dialysis!  Give me hope!!!   I salute of all you perserverers    and down the line, I plan to be in your group.  Now I have only 5 years so far.

[kevno]

How long is a long term renal patient! I remember when i went back on dialysis when my transplant failed. Every phone call used to jump up and my heart would start pounding until i could hear who was on the other end of the phone. Now nothing, I know it is not a transplant. Now all I have is this Machine. Over the years being back on dialysis I have lost so many friends. It gets so painful, I did start to try to distance  myself from renal patients, it was getting to hard to cope. Used to get to the unit just in time to say good morning and that was all. Then straight on the machine. Now I have started talking to the patients on the unit again. Plus starting to get to know them again. I have no idea which is best way. I know some will die and have died. But I do not have the feelings that i used to have when a close renal friend died.

Is this what makes a long term dialysis patient. You lose so much you get used to it? 

[Barbara Schickedanz]

 
I KNOW HOW YOU FEEL.  I HAVE BEEN ON DIALYSIS FOR ONE YEAR.  I GO 3 TIMES  A WEEK, 3 1/2 HRS A DAY.  I STILL HAVE ONE KIDNEY BUT IT DOES NOT FUNCTION AT FULL CAPACITY.  I NOT ONLY AM ON DIALYSIS, BUT I AM A CANCER PATIENT FOR 11 YEARS, STILL GET CHEMO EVERY OTHER WEEK, AND EVEN THOUGH I AM NOT DIABETIC I LOST MY LEG JUST BELOW THE KNEE THIS PAST OCTOBER 2009.  AS YOU CAN SEE I AM NOT AND WILL NEVER BE A CANDIDATE FOR A KIDNEY TRANSPLANT, SO HOPEFULLY, I WILL BE ON DIALYSIS
FOR THE NEXT FEW YEARS.  I HATE 3 1/2 HRS BUT I GUESS IT OS BETTER THAN 4.
BARB SCHICKEDANZ



Edited: Fixed smiley error - okarol/admin

[del]

WOW  22 years on dialysis!!  My hubby is a little behind at 13 years!!  Hopefully you will have many more years of dialysis!!  A good attitude goes a long way!!

[kevno]

Zach still has me by one year 22 years back on plus 5 nasty years in the 70's. What I can remember of it. Ten years old given Valium To calm me down before I had the needles   Nearly forgot 6 years with a transplant. So its 33 years dealing with HEMO/CAPD/TRANSPLANT/CAPD/HEMO 

[Meinuk]

Kevno, you and Zach are the leaders in this marathon that we are all running. All I can say is thank you, thank you, thank you.  You give us all hope and inspiration, and that is 90% of the battle.