Quality of Life

[65_and_wondering]

I am a 65 year old married male with two adult children and two grand children. I have been on PD for about nine months and found it NOT to be a significant burden. I am contemplating going on the Kidney Transplant waiting list.

I am interested in input on Quality of Life Positives and Negatives of transplant life vs PD life. Any facts, thoughts, observations or other input would be appreciated.

[Readingrainbow]

Hi!!

I think all any form of treatment for renal failure has pros and cons, you just have to choose the best for you. I did PD for 5 years before doing hemp for another 4 years. I got my first transplant last year. It totally depends on your health and body. Typically you get released from your transplant team at si months, I got released at 9 1/2 months. The kidney was fine, but my body wasn’t and wasn’t anything like rejection or infection, which are the 2 main concerns with transplants. Depending on your health coverage, the transplant medicine can be expensive and there are some pills you will be taking for the rest of your life. Other than that, if you can get a transplant, get one! It’s intense in the beginning, but the freedom from tubes and supplies, at least for me, makes it totally worth it 😃

[65_and_wondering in reply to Readingrainbow]

Thanks, Do you have dietary restrictions? Did your PD go well? I trust the anti rejection drugs have not lead to later infections or other problems. Hemp, legal marijuana?

[Readingrainbow in reply to 65_and_wondering]

😂my reply should of said hemo, not hemp😅. Darn autocorrect.

Umm, my PD experience was almost as traumatic as my initial hemodialysis experience. By the end of it I was up to 12 hours on the cycler, 2 manual changes during the day and a carry of 2500ml. There are some dietary restrictions but not nearly as many as while being on dialysis. The restrictions are based on your body and labs except grapefruit, pomegranate, starfruit and Seville oranges; they interact with the immunosuppressants. Food safety is uber important because your immune system is severely compromised, so a simple bacteria could send you into a rejection episode.

[65_and_wondering in reply to Readingrainbow]

I am very sorry to hear of your bad experience. My PD however, has been quite the opposite - very uneventful. I do three, two hour exchanges of 2700 ml. Once or twice a week an alarm will go off; much less frequently a couple go off in one night. Generally my daily go from 6:30 am to 11:00 pm without any lifestyle changes. One last (?) question - I have been told food must be well done after transplant, ie. beef, eggs, etc. is that true?

[Readingrainbow in reply to 65_and_wondering]

That's true. Lucky for me it was it wasn't an issue. Simple microbes could be dangerous.

[3Kidneys]

I’ve been on PD this time around for two years, prior to that I had a kidney transplant that lasted for 9 years. My transplanted Kidney was a perfect match, however my body had reactions to some of the drugs they gave me, which caused a major rejection episode, which damaged the transplanted kidney. I have also done hemodialysis in the past. For me, transplant was the best, that being said you need to know that Medicare will cover your drugs for 3 years, after that it is up to your private insurance. Most insurance companies consider these tier 3 or 4, so the sticker cost is outrageous. For example I was paying $500 per month just for one of my immunosuppressants. But you only have to take pills twice a day, other than that it’s pretty much life as “normal “.

I am eligible to go back on the transplant list, however I’ve checked with my new insurance company regarding the pricing of immunosuppressants and know that I cannot financially afford to do so. Even though I know there is some financial assistance available, I would not qualify for it.

[WYOAnne NKF Ambassador]

First off, I am living well 19 years post transplant. For me, I was 100% for a transplant. I was doing hemodialysis and it was not going well for me.

- I was healthy with no health issues at the time of my transplant. I was 49 years old. I had a deceased donor who was 16 years old. He was also a 4/6 match for me.

- I take anti-rejection drugs and will for the rest of my life. The first 6 months were a little rough with these meds till my body adjusted to them. My transplant team was able to decrease the dose of one of the drugs and was able to stop the steroids.

- I have a fantastic quality of life. My husband and I travel - Europe, Mexico, Canada, & the Caribbean. We live in a state with the Rocky Mts and we hike.

- The only restrictions I have is to do my renal labs and see my nephrologist quarterly. I continue to restrict my salt intake. I pretty much eat whatever I want. When I eat beef, it is not well done! I eat it medium-rare. I do not restrict my protein. I eat eggs several times a week.

- For me, LIFE is wonderful! I am now 68.

- Any questions?

[Clumsydot]

So very encouraging to hear! I am on the kidney transplant list and trying to avoid dialysis for as long as possible. I have been feeling lousy lately, so see my nephrologist on Monday. I really hate to start dialysis and would prefer a living donor. I have had three selfless offers recently, but all had health issues that prevented them from donating.

[65_and_wondering in reply to Clumsydot]

A bit of a repeat , but from my experience, PD is not to be feared. Of course not everyone on PD has as good an experience as I and I have no experience with Hemo Dialysis.