KidneyLyfe — KidneyLyfe

Pre-transplant - but still have questions

run_for_fun — Thu, 22 Jan 2026 20:36:32 +0000

Just found this site today. Jumping right in with my first post.

Male, 57, ALD, surprisingly, I wasn't a big drinker, except in my twenties.

Celiac and vitiligo are the autoimmune diseases that I was diagnosed with about 16 years ago. I'm used to sudden, necessary lifestyle changes. -

We, my wife and I, finally called the hospital to schedule my liver transplant for May 2026.

My wife will be my living donor. It has been a struggle for me to agree to that.

There are still so many unanswered questions. I work with my team and therapist. We have a small business that relies on my wife and me to be present and working.

In the last few years, we took up recreational running, and now I've started running in the gym and lifting weights. My doc says I need to lift to maintain muscle. Sometimes I get too competitive and run faster and lift more weight than my doctor would approve of.

I want to be in the best shape I can be again.

I hope recovery will not take more than 3 months before I can return to my desk. My wife gets scared when I speak of potential risks and side effects.

Would love to hear what the real post-transplant life will look like.

Has anyone been able to run again post-transplant and live a (somewhat) normal life?

Thanks for reading this!

Has anyone here consulted a senior interventional cardiologist in Pune for things like angioplasty,

rohitpathak — Tue, 27 Jan 2026 11:40:49 +0000

I came across a very detailed guide about a Pune‑based cardiac centre that offers advanced diagnostics (ECG, Holter, 2D echo, ABPM) and a wide range of procedures, and it sounds impressive on paper. I’m curious to know from people who’ve actually undergone treatment in similar high‑end heart centres in Pune, how was your overall experience in terms of doctor involvement, clarity of explanations, costs and long‑term follow‑up?

Weighing on Waiting is live in our newsletter and Blog section of TransplantLyfe

Berriosa1234 — Sat, 25 Oct 2025 21:09:19 +0000

My blog post is live check it out under the education tab here at transplantlyfe and scrolll down to blogs. please let me know what you think? Any kind words of wisdom from this wonderful group

Is anyone taking name brand Progaf and if so how are you paying for it?can

kirby — Tue, 12 Aug 2025 16:48:09 +0000

I recently learned my copay assistance will be canceled. The lowest price I have found for Prograf is about $1300 a month. I can not afford that and don't want to switch to the generic if I don't have to. (prograf has me stable for almost 20 years-kidney transplant). Does anyone know of a resource?

July 31st Webinar on Financials in Transplant

JamieHaight — Wed, 23 Jul 2025 14:20:51 +0000

Hi All! We are hosting Episode 2 live on July 31st on Zoom. We hope to see you there! Register on TransplantLyfe.com/webinars. If you missed Episode 1, the recording and summary are on that page as well.

Submit Your Questions: Upcoming Medicare-Centric Webinar

onlylivingboyinny — Wed, 11 Jun 2025 20:43:04 +0000

Hey, all. Later this month, on Tuesday, June 24th at 4:30pm Eastern Time, TransplantLyfe will be hosting a live webinar entitled, "Financial Considerations for Transplant Patients."

We'll be joined by a very knowledgeable social worker who will cover everything from typical costs associated with transplant to the various parts of Medicare and how/why one should apply, if eligible.

In order to best prepare for the webinar, we'd love to hear any questions you may have about Medicare coverage. Simply post below.

Who has hearing problems?

darth_james — Mon, 27 Nov 2023 19:36:58 +0000

Greetings! I’m darth_james. My second kidney transplant was three years ago and it’s working well. I have severe bilateral hearing loss that mostly developed during periods when I was on dialysis. I wear two hearing aids and it’s an obstacle but it’s not easy finding suitable work with hearing impairment and a suppressed immune system.

I would also like to hear what others might suggest for a part time job.

Interesting Article Today on Compensating Living Donors

lescp3 — Tue, 29 Apr 2025 15:56:02 +0000

https://www.thefp.com/p/i-had-two-kidney-transplants-i-want

Is altruism enough? What are your thoughts?

Insurance frustration

TServold — Sat, 01 Feb 2025 04:22:35 +0000

In October I was in Boston for work, and suddenly because very ill. I also have celiac disease and I am not certain I wasn't glutened from the breakfast I ate one morning or maybe it was something else but I started vomiting and wasn't unable to keep anything down all day. Water, Gatorade, crackers it all came back up. My urine output was also very little since I was dehydrated. I took myself to the emergency department for some fluids to be in the safe side. I purposely went to the hospital where they also have a transplant center vs an urgent care. I was 99% positive I just needed some IV fluids but I didn't want to risk anything. I was alone, and in a city several thousand miles from home. Now, my insurance is saying this wasn't medically necessary and are not paying for it. I asked for a resubmittal of my claim and requested support from my transplant team so I am sure the total amount of the bill will go down, or so I hope. I think I'm just venting here but sometimes the American healthcare system and insurance are so frustrating! Have you had to fight with insurance?

Transplant post care stay

Berriosa1234 — Thu, 19 Oct 2023 16:59:46 +0000

Does anyone know of any type of post transplant care housing units anywhere in the country? Like a ronald mcdonald house? I've heard of some hotels giving patients and their caregivers discounts at local hotels near the transplant centers, but i would love if we could create some kind of housing for pts and their loved ones after transplant, i know there is a need there.

Here is an idea of a place that works with veterans called the fisher house foundation. (fisherhouse.org)

Looking forward to the dialogue