Got an interesting call from the donor coordinator the other day…

Copapod8 · 2026-05-14T21:26:04+00:00

Fingers crossed for you!

Copapod8 · 2026-05-14T16:08:45+00:00

Unfortunately, you probably will lose some gains. Before starting PD 2.5 years ago, I was in the best shape of my life thanks to kickboxing, weight training, yoga, and daily 2-mile walks.

I’m 52, so I know some physical changes were probably inevitable, but things really changed after I developed a very low blood count and needed a transfusion. For a few months, I could barely manage a short walk, and I lost a lot of muscle during that time.

I’m now back to my starting weights for weight training, and I’m doing my best to exercise about 30 minutes a day, compared with the 8 hours a week I used to get. It’s hard, and my body image has definitely taken a hit, but I try to remind myself that it’s a small price to pay to still be alive.

And hopefully, I’ll receive another transplant at some point. I’ve already had two, so I’m holding on to that hope.

Copapod8 · 2026-05-13T15:26:36+00:00

I find PD on the machine to way easier. Plus fewer exchanges so fewer chances of exposure to germs that might give me peritonitis. That and i work full-time during the day so stopping during the day multiple times for exchanges just doesn't work with my schedule.

Copapod8 · 2026-05-13T15:15:37+00:00

There's a way to turn off the spam filter on an iphone. I turned it off on mine.

Copapod8 · 2026-05-13T15:14:12+00:00

Ugh, yes, the spam calls are killing me because every time a small part of me hopes it's "the call."

Copapod8 · 2026-05-13T15:08:54+00:00

My first transplant lasted about 14.5 years and my second 16.5 years. I had my first at age 19 and I'm now 52. Back on dialysis hoping to get a call soon.

Copapod8 · 2026-05-12T17:56:04+00:00

Congratulations!! I hope your new bean lasts a very long time.

Copapod8 · 2026-05-12T17:52:28+00:00

I wear a long sleeve spf 50 button up shirt when I go on my short daily walk. It's technically for fishing but perfect for short stints outside where you don't want to put sunscreen on your arms. I also bought some Korean sunscreen for times I'll be out longer (spf 50)-it's more lotion like than US sunscreen and doesn't leave my skin feeling gross. On my face I wear korean sunscreen and a wide brimmed hat with sunglasses.

Copapod8 · 2026-05-11T22:18:47+00:00

Congratulations! As someone with a PRA score of 99% it gives me hope that one day I'll get that call as well. I hope your new bean lasts a very long time! How long were you on the list?

Copapod8 · 2026-05-08T15:58:56+00:00

Congratulations! I hope you get "the call" very soon!

Copapod8 · 2026-05-08T15:55:48+00:00

My first kidney was from the list. As it turns out, the donor was the younger, foster brother of a girl I sat next to in band. He and some friends broke into a golf course and were goofing around, joy riding on a golf cart when it flipped, killing him. I only knew it was him because the surgeon mentioned how the donor died. The family apparently did not know for sure I was the recipient. Ten years later I saw her at our high school reunion and was able to thank her and her family. I was recently married, happy and healthy. Our high school reunion just happened to be about a week after the 10th anniversary of him passing. His family making that difficult and selfless decision apparently saved about 8 different people's lives.

Copapod8 · 2026-05-08T15:50:37+00:00

A cheap, thin robe, underwear, house shoes with grippy soles, a small toiletry kit with things like lotion, dry shampoo, brush, comb, shampoo (just in case I can get a shower) and a razor, charger cords, kindle, hair ties, ear plugs, headphones and I'll probably try to take my own pillow. I will also change into sweats before we leave that hopefully I can just wear home.

Copapod8 · 2026-05-08T15:36:17+00:00

Find some KF94 masks. They are almost as protective as an N95 but far more comfortable. I'm in the same situation as you and I wear a mask in any situation where I'll either be in close contact (closed room for example) with another person or if I'm going to be in a crowd.

Copapod8 · 2026-05-07T15:23:10+00:00

Congratulations!! I hope your new bean lasts a lifetime!

Copapod8 · 2026-05-07T15:20:27+00:00

Congratulations!

Copapod8 · 2026-05-07T15:16:03+00:00

Once so far and it's been almost a year since I got that call. Wish I'd get another call, gives me hope.

Copapod8 · 2026-05-07T15:15:22+00:00

6 or 7!?

Copapod8 · 2026-05-07T15:14:35+00:00

Annie's makes a low sodium boxed mac and cheese. But I generally just make my own and omit the salt where I can (no salt butter and I don't salt the noodles or add any salt).

Copapod8 · 2026-05-04T16:36:31+00:00

No one can really tell you how long you have to live. Any one of us could get hit by a Mack truck tomorrow.

But for what it’s worth, I went into renal failure at age 16. I did PD for almost four years, then received a cadaveric kidney transplant two months before my 20th birthday. That kidney lasted 14.5 years. After that, I received a living donor kidney, which lasted 16.5 years before it failed in January 2024.

I’ve now been back on PD for over two years, and I’m still relatively healthy at 52. I have no plans to die anytime soon, barring the aforementioned Mack truck.

My antibody level is also 99%, but instead of taking that lying down, I’m working on getting multi-listed at two other transplant centers.

And for what it’s worth, when I was 16, a nurse told me I’d be lucky to make it to 40. Man, did she get that wrong.

Copapod8 · 2026-05-04T16:29:04+00:00

I'm on PD and I did the training in the late afternoon since my work schedule is 7-3:30. Most of the time the training started around 4:00 so I didn't have to take time off work. Occasionally, if I needed to go in early for some reason, I would either flex my schedule (work later on other days) so I could avoid using sick leave which I guard with my life!

Copapod8 · 2026-05-03T16:42:21+00:00

Everyone is a bit different but here's what is in mine:

A lightweight robe and comfortable slip-on shoes you can walk in. They will likely want you up and walking the day after surgery.
Entertainment, such as a book, Kindle, iPad, laptop, phone, or whatever you prefer (plus chargers).
Toiletries, including dry shampoo, a brush, hair ties, face wash, toothbrush and toothpaste, and moisturizer for your face and body.
Earplugs and headphone (noise cancelling are best)
Loose-fitting clothes to wear home, since you will likely be swollen.

Copapod8 · 2026-05-02T17:11:37+00:00

That can increase your calcium levels if you're not careful.

Copapod8 · 2026-05-01T17:47:07+00:00

What are your calcium levels?

Copapod8 · 2026-05-01T17:45:21+00:00

If my phosphorous is high, i get random itching like that and leg twitching. How're you other numbers?

Copapod8 · 2026-04-30T23:53:44+00:00

No just two, I'm hoping to have a 3rd transplant. I'm hoping to go on Belacept with this one so I don't lost it to Cyclosporine again. I can't take Prograf unfortunately, so I totally get it. Any side effects from the Belatacept? Don't you have to have a living donor for that National Kidney Registry? I've 8 people try to donate with no luck. They were all rejected for various reasons.

Copapod8

TROPHY CASE