I was just in clinic with my nephrologist and I was told that if I have a second transplant I will likely have my skin cancers get much worse to the point of skin grafting and reconstructive surgeries! So, of course there are 3 other treatment options: HD, PD or just conservative/palliative.
I was never on dialysis, I was very fortunate that I received my transplant without having any dialysis! Now, I may not have that option & must chose between HD & PD. I am wondering if there are anyone on this forum that has done both of these??
Would you please share your thoughts of pros'/cons of each and your quality of life that you had/have with these? I know everyone may have some different experiences, but I would really appreciate your lived experiences so I can have a better idea for myself as what to chose.
I was on hemo for a year with a neckline. It was do-able, but a bit of a pain with the time commitment of 3 mornings a week. And it was the entire morning. 4 hours dialysis time, 15 minutes set up and take down (so 1/2 an hour) and then the travel time to and from dialysis. And my bp was usually too low to drive afterwards.
I had a PD catheter inserted and wanted to do it, but because of my severe endometriosis it was very painful so I never started regularly. I wanted it because it's easier on your body (continuous fluid removal rather than a larger amount 3 days per week - better for your heart) and also because most people can have a more liberal diet. PD removes potassium a lot better than HD. I once threatened to strangle a friend who was on PD over the lunch table. I was eating something bland with no veggies (too much potassium) and she was eating a BLT on whole wheat. I didn't even dare take a bite! :-(
While I did travel while on hemo, I found among my friends on PD that it was easier for them to travel while on PD. But being able to eat more foods was the biggest thing I wanted.
Both forms of dialysis have potential downsides. From spending a lot of time in support groups, I've noticed that most people are finally able to make a decision based on what grosses them out less. A tube in your belly or a fistula in your arm. Keep in mind that ultimately the decision may be sort of out of your hands based on what the docs say who will be putting in the access.
Do you have any specific questions? I know a fair amount about all 3 forms of dialysis - PD, in center HD, and home HD
Thanks for your feedback. Can you tell me more about your home hemo? Did you have trouble with your BP then? Did your do nocturnal runs , conventional runs (3-4hrs) or short runs 2-3 hrs?
How limited is the diet/fluids on hemo vs. PD?
How is/was your energy level while on these modalities? How would you compare to before you had CKD?
I remember a friend of mine who was on PD and was out shopping: came out of the change room, unknown to her, her PD catheter was hanging out of the shirt!! We both laughed about her new "accessory"...
Loretta, I didn't do home hemo. But I had a few friends who did. It took about 6 weeks of daytime in-hospital training to get it down pat. But once they were doing it (slow and steady overnight 6 days per week), they did amazingly well. My one friend could eat completely normally with no restrictions. In fact, he had to eat more milk and cheese as his phosphorus was kind of low. And when he was on in-center hemo, he could barely walk around the block. Once he was on home hemo with a lot of dialysis, he could ride his bike for 50 to 75 kilometers at a time.
Regarding diet and fluids, in center hemo and PD are similar in most things (phosphorus restrictions, a bit with fluid, protein intake) but PD allows most people to eat a lot more potassium. Which means a much healthier diet as you can eat lots of whole grains, fruit and vegetables. I think because of the diet issues, you can overall be a lot healthier and have more energy on PD versus regular HD. You can drink a bit more on PD as the fluid is removed every day. It's a lot harder on your heart taking off 2 days worth of fluid in 4 hours when you are on HD.
As for energy, once I got used to the HD, I had more energy than before I went on. Still not anywhere near what I got with my transplant, but I was better than when I was in ESRD.
For a few other reasons I would not be able to do home hemo. But if you can, it's considered almost as good as a transplant.
That's great info! Thanks.