I have been on hemodialysis since 1976!!! I was 11 years old when I started and was put directly onto a transplant list. I was called over 10 times but never recieved that long awaited new kidney! I went off the list for many years, Then went back on when Cyclosporine started into use. It was 1988 and things went downhill from all the drugs!! After the kidney rejected I never went back on the list! I am a patient advocate in My unit and like to help other patients with problems that the doctors and nurses don't quite understand ( from a patients point of view! ) You must take part in your care and understand why you take certain drugs. Knowing your own body and what you can and can't handle. I love to give little tips to new patients and hear them tell me that my advice helped them!!!I always tell them to check with a staff member first!!!
I would love to hear from any other long timers, I feel very fortunate to have been doing dialysis for 28 years with only 2 accesses, A graft for 6 years and my fistula for 22 years!!

Hi, Amy Jo
It was nice to see there is someone I can relate to out there. I too, am a long timer. I was 8 years old when I started on dialysis in 1977. I have also been on and off and on and back off again, with a couple of "holds" and now I'm just off "hold" and back on the list again. I've had 4 kidney transplant the longest being 3 1/2 years. (two lasted a year and the last which was just 10 months ago not even a week.) I totally understand what you are talking about, especially about the good and the bad about being on the list. I although, unlike you, have had 1 shunt, and 7 grafts, 4 paratineal catheters, and 4 perma caths. Not to mention all the other little goodies that I've had done. It's great to hear from another old timmer. Pls email me at wishingstar1969@yahoo.com.



[This message has been edited by wishingstar (edited 10-23-2004).]

Hi All
I too am a old timer starting hemo in 1979 at the age of 24. I have led a normal life including marriage, 3 children, vacations, a job, and many happy times. I too enjoy helping new people starting dialysis. It helps them and reinforces what i still need to keep doing. I would love to chat with anyone about dialysis. Just email me at DialysisJoeM@aol.com

I'm a healthcare writer and I'd love to talk to you offline about your story and how you help others, not just patients, but the doctors/nurses.

my email is bcote@hcpro.com and my number is 860-232-6377

Hi:
Congratulations to all of you. I'm sure you have inspired many.

Sincerely,
Mike

I'm the 'old timer' on my shift ('only' 8 years on hemo), and I also enjoy talking to new patients and helping them adjust to dialysis.

I started hemo at age 23 in 1988, had a kidney transplant for 3 years, did PD for 3 years and am now back on hemo. Three grafts, three PD catheters and three I.J.s... I've done it all!

I think 'vets' of dialysis all have one thing in common: Our desire to learn all we can about our treatments. I think that's a better predictor of long-term survivability than anything else.

I've been sick since birth in 1973 but didn't have to start dialysis til I was 16 when they put me on peritoneal dialysis. I have also had a transplant that lasted for 11 years and then lost it and had to go back on PD and am now on Hemo dialysis. I have had 2 fistulas (the first one failed after only 10 days but this one seems to be working but hasn't been used yet) and even though I have lots of experience in MOST parts of renal failure, dialysis, transplantation and rejection, .. hemo dialysis is still pretty new to me and I am nervous about when the actually start to use my new AV Fistula.

Do you have any advice for me?

You can email me at angieskidney at gmail .com

I was first diagnosed with kidney failure a little before my 6th birthday. I had partial function until I was about 12, then I was on paratineal for around a year before I got my first transplant, that was around 1992. That kidney, from a 14 year old boy that was in a car crash, gave me pretty good life for almost 9 years.

I went back on peritaneal in 2001, but I only did that for a few months before it was desided I needed to switch to hemo. To be honest I was happy to get rid of the tube in my belly. I've been doing this hemo thing for about 5 years now, 3 days a week, 4 and a half hours a day.

I give props to all you long timers, to have survived the mental, emotional, and physical stress of this kind of life is a testament to your fortitude and strength of will. My hat is off to all of you.

PS: WooHOO, my first post! :>

quote:

Originally posted by Jeckel:
I was first diagnosed with kidney failure a little before my 6th birthday. I had partial function until I was about 12, then I was on paratineal for around a year before I got my first transplant, that was around 1992. That kidney, from a 14 year old boy that was in a car crash, gave me pretty good life for almost 9 years.

I went back on peritaneal in 2001, but I only did that for a few months before it was desided I needed to switch to hemo. To be honest I was happy to get rid of the tube in my belly. I've been doing this hemo thing for about 5 years now, 3 days a week, 4 and a half hours a day.

I give props to all you long timers, to have survived the mental, emotional, and physical stress of this kind of life is a testament to your fortitude and strength of will. My hat is off to all of you.

PS: WooHOO, my first post! :>

It seems us who have been on dialysis since quite young can adapt to this easier. I feel bad for those who were healthy all their life and then got sick or those who are diabetic and got kidney disease as a secondary condition.