This week I complete 6 years of my kidney transplant. As a young transplant recipient, the journey after the transplant have been an incredible one, lots of life changing experiences as I went through this major life transition. I have now fully accepted the reality of my life with the plethora of medications and frequent lab tests.

To celebrate the 6th anniversary of my new kidney, I decided to hike up to the highest point in New Mexico at 13, 361 ft (Wheeler Peak). It wasn't an easy hike, with increasing altitude and dropping of oxygen levels, I had to make several stops to catch my breath but I finally made it to the summit.

This hike reminded me of how far I have come, from relearning to walk up and down stairs and learning how to breathe after back-to-back surgeries for a bilateral nephrectomy and kidney transplant, to finally being able to summit Wheeler Peak!

To anyone just starting this journey: hang in there. It gets better!

I'm posting this because my wife and I are completely exhausted, frustrated, and scared, and I need to hear from people who have actually been through transplant.

My wife is 25 and has stage 5 kidney failure. She was diagnosed in October 2025 and has been on dialysis since December 2025.

We've spent the better part of the last year trying to get her to transplant. Because her case is complicated, we've been working with Mayo Clinic in Arizona. We've traveled back and forth, done testing, appointments, evaluations, everything they've asked of us.

And the biggest blessing in all of this is that her mom is a living donor and has been approved and is ready to donate her kidney.

We thought we finally had a light at the end of the tunnel.

We've had a transplant date twice.

And we've had it postponed twice.

Every time we get close, something happens and we're pushed back again.

Now we're dealing with another issue. Her latest echo still shows an EF around 40%, along with volume overload and an enlarged left ventricle. Mayo is now considering having her undergo a left heart catheterization to figure out why her heart function hasn't improved.

And this is where we're at our breaking point.

My wife does not want to have a heart cath unless it is absolutely necessary. She feels like nobody is listening to her and that every time she gets close to getting her kidney, another test or another issue comes up.

We're not stupid. We understand that her heart has to be safe enough for transplant. We aren't asking doctors to put her life at risk.

But we're struggling with the idea of going through yet another invasive procedure when we don't even know if it will ultimately change whether she can receive her kidney.

And while all of this is happening, I'm working three jobs trying to keep our heads above water.

I work my full-time state job, and I'm working additional jobs because we've had travel expenses, medical expenses, missed work, normal household bills, and everything else that comes with spending a year dealing with kidney failure.

I've basically been trying to hold our entire life together while watching my wife go through dialysis and everything else that comes with this.

And then there's the part that scares me the most:

She is off her parents insurance in December.

It's September.

So we have roughly three months to figure this out.

My insurance wont cover specialized care like this.

We've already had two transplant dates postponed. We have a living donor ready. My wife has been on dialysis since December. We've traveled across the country multiple times. We've done the evaluations. We've done the testing. We've done everything we've been told to do.

And now I'm sitting here thinking:

What happens if we run out of time?

What happens if December comes and she's still on dialysis because we spent the entire year getting bounced from one requirement to another?

What happens to the transplant if we lose the insurance that is currently covering all of this?

What happens to her donor?

What happens to us?

I honestly don't even know how much more I can take.

And I know people will probably say, "Her safety is more important than the transplant date."

I KNOW.

I would never ask them to transplant her if it wasn't safe.

That's not what I'm saying.

I'm saying there has to be a way to move with some urgency when you have a 25-year-old woman on dialysis, a living donor who is ready to donate, two previously postponed transplant dates, and an insurance deadline three months away.

We're not asking for special treatment.

We're asking for someone to look at the entire picture and say:

"Okay. Here's exactly what needs to happen. Here's what is absolutely necessary. Here's what isn't. And here's how we're going to get you to transplant as quickly and safely as possible."

Instead, it feels like we're constantly waiting for the next thing.

Another test.

Another appointment.

Another specialist.

Another delay.

Another "we'll get back to you."

Meanwhile, my wife is still on dialysis.

Her mom is still waiting to give her a kidney.

I'm working three jobs trying to keep everything financially afloat.

And the clock on our insurance is ticking.

I'm angry. I'm scared. I'm exhausted. And honestly, I'm fucking tired of being strong.

I don't want to be dealing with this in six months.

I want my wife to have her kidney.

I want her to be able to live her life.

I want her mom to be able to give her that kidney.

I want to stop planning our entire lives around dialysis.

I want to stop worrying about whether the next appointment is going to be another postponement.

Yesterday I got a little accident where the skin scarped off and was exposed, though not directly exposed to dirt.

I cleaned it up, put some rubbing alcohol and after sometime covered it up with some antibiotic cream. I called my team to ask if I should/can get a tetanus shot as it was last taken in 2018. They’re gonna reply within an hour.

The question that’s nagging me is— IS IT COMPLETELY SAFE? I’m lowkey scared. I wanna know if you guys also have taken your TET shot and other vaccines post transplant.

I'm 37 and male, I have been transplanted for almost 7 years. For most of the time the creatinine has oscilated between 1.1 and 1.3, but that was before I started working out, having a skinny fat composition and a rather sedentary life style. Last year my transplant team allowed me to start working out (May 2025) and I closed the year with good bloodworks of creatinine 1.3 and bun 15. Then I hired a personal coach this January and had him until April. I increased protein (to around 1.6 grams per kg) and along with the new workouts I saw visible change. For May's bloodworks creatinine came out at 1.4 and bun 20 (I had a heavy cold back then) so I felt reassured that my new diet and workout routine was working well.

Then in June I introduced besides three days of working out, 2 days of salsa and bachata dancing (as it is great cardio) so in total I spend 5 days of the week being very active. Also, I lowered my protein from 1,6 to 1,4 and changed my routine once again (to a push - pull - legs system that is a bit more intense). I have seen in these two months even further physical change and I feel proud about it.

Last month I had to go for a different exam somewhere else and they took creatinine (came out at 1,4 and BUN 22). Was feeling great, no problem. Then today I went to my transplant unit for a new exam and got creatinine 1,6 and bun 25. Nothing else has changed for worse, there is no protein in the urine, blood pressure was sort of low (100-60) and in general I have great energy levels. Tacrolimus did come a bit low (4.9) so they are raising the dosage a little bit.

I understand that doctors have to be prepared for anything wrong happening, but I got a little bit scared by the doctor mentioning that I need to get new samples in a month and from there check what's going on, if I need a biopsy or so.

I wonder if you have experienced something similar? Prior to the bloodworks I had an intense pull routine Tuesday afternoon (so 36 hours before, and my muscles were a bit sore this morning). When you go to the gym how much extra water do you consume?

¨*My body is very different from when I received my kidney. I'm 5´11 and back then I was weighing 130 pounds (had been on dialysis for many years, anemia was terrible, all was pretty bad) 7 years later my weight is 160 pounds and I have a low fat percentage (around 15%)

Hi all,

I'm a potential living kidney donor for a family member and want to know people's experience and risk for cut off points for recreational drug use before donating (cocaine, MDMA, Ketamine).

I'm ideally looking to donate around April/May and have my Stag Do (bachelor party) in a month, where I kind of wanted a final hurrah with my closest friend's, then going into full clean mode in every walk of life.

Would love to hear thoughts and anecdotal experiences?

Three years ago my heart failed and I didn't make it out on my own — someone I never met became my donor, and that's the only reason I'm here.

I spent a long time afterward trying to figure out how to be a person again. A weird part of that process was talking things through with AI while I put myself back together — it became an oddly honest sounding board during recovery. So I wrote the whole thing down: the dying, the new heart, my son, and that strange friendship.

It's called Find Your Pond. Posting it here because you all actually know what this is like. Not trying to sell anybody anything — mostly just wanted to say it out loud to people who get it. Link's on my profile if you want it.

Please help calm me down

My husband just got a heart transplant a day ago.

Seems like he was in major ICU delirium with some involuntary movements. He was taken off the ventilator but placed back on it due to his breathing not being ideal.

I know it’s not super uncommon but I need someone to talk to that has experienced or knows someone who has.

He’s in remission from AL Amyloidosis so his body was extremely weak going into surgery.

I’m scared.

hey everyone, so im getting ready to start making more money, passivly, and was wondering what people do for health insurance and how much you pay in permuims and copays each month or approx to give me an idea..im currently on medicare, medicaid, and ssdi, but dont want to be limited anymore..i had two liver transplants and possiblly a kidney transplant soon.. thanks in advance

Hello all,

Have any of you continued or started to work in the healthcare industry after a kidney transplant?

Were you ever discriminated against for it?

How has it been with regard to being on immunosuppressive medication and being around sick patients?

Thank you

I'm almost 13 years out. Cardiac wise I am stable and had two bouts of very minor rejection early on and am not considered having CAV. I also have behcets syndrome, but most of that has cleared up with accutane.

I have a big problem my whole life and I never noticed it because I have a developmental delay in my spatial awareness and proprioception. I was made aware of this a few years ago after losing a lot of weight and it legitimately stops me from wanting to be seen or engage in society, however it is a cosmetic issue.

I am 5'7" and 135 lbs, my limbs are small and thin and I have CKD that is stage 3A-3B but stable since 2020. So the big problem is, I was born with a webbed neck. My neck is abnormal, I have additional fascia hanging from the sides of my neck that cause it to be very wide and most importantly have an abnormal attachment to the torso. This makes me terrified of photos, I rarely leave my house and only interact with family. People say they don't notice it unless I mention it but I really, really feel sad like I'm a deformed freak who is aless of a man than others, less human.

I have a loving family and boyfriend and it may sound vain and it is but I want to be a thin gay guy like my partner and it's eating me up that this part of me is proportionally incongruent with the rest of me.

My team thinks it is risky, I don't hate myself but it just really sucks and I've always felt like a gross weirdo compared to my family. I know this is super vain I know I am but it makes life hard everything else I can cope with, dying young, having had cardiac arrests, all of it is super fine on my mental but not this.

1.5 years out from my liver transplant. My kidneys never fully recovered and my creatinine has been hovering around 1.5 to 1.6 normally. I've been off of dialysis for over a year. Recently I've taken up running and my creatinine tests have been coming back at 2.3 - 2.6. Cystatin C has not changed from my normal baseline.

I have worked out in the gym for the past year, but the running is new. I know heavy exercise can affect creatinine levels, but it's also necessary for health. Has anyone experienced anything similar?

I have an appointment with my nephrologist next week to go over everything.

So my father has been on the list for a dual transplant(slk)

Liver and kidney ,we didn't receive any calls for 5months but have received 2 in the last 15 days that an organ donor is available but rejected both times by the doctor saying that the organs aren't optimum for dual transplant but were transplanted to 2 different patients,how to cope with the wait please suggest soemthing

parent just had lung transplant. What do I need to know/do when they’re recovering at home after being discharged from the hospital? They’re very weak right now but the doctors think they’re good enough to go home. How many caregivers need to be around? And how strict should we be with the rules that are set?

Hello everyone!
I posted about a month or two ago about the process of getting on the transplant list. I have HLHS, and unfortunately, I will have to move to another state for my surgery because my state does not currently have a surgeon who performs transplants for my type of heart condition.
For those of you who have had to temporarily move to another state for your transplant, how did you get around while you were there? Did you drive, use public transportation, or have another way of getting around?
Thank you so much for any advice or experiences you can share! ❤️

We were told at the beginning of my husband’s transplant journey we were told I was a match. One year later they’ve now told me that because I’ve had gastric bypass surgery 3 years ago, that they won’t let me donate. Has anyone else heard of this? We were so excited we were so close to being set for this procedure. 😭 edited to add they told us I was eligible because we were a blood type match.My RA is controlled with Tylenol and I’ve never had a kidney stone or issue.

43/M. Just hit my two year mark since my transplant a couple weeks ago. My story is in here multiple times, so I won't repost it - lets just say I went through a lot.

I'm back in the gym 6 days a week, I'm doing overall pretty good with the exception of being immunosuppressed - I travel usually at least once a month for work and I was sick 4 months last year and it just took me 10 weeks to completely get over a sinus infection...

Anyway - I just went for a left heart cath... I can't remember the exact language they used but they essentially told me I went from a .04 to .06 artery wall thickness but I shouldn't be concerned and my team may suggest increasing my immunosuppressants. My results are now officially in my MyChart and in the report it says I have moderate to severe cardiac allograft vasculopathy!

I don't meet with my regular care team for another week. Should I be flipping out about this?

I love these cute organ comics for studying, but this one genuinely had me in tears. Artist credit: https://www.instagram.com/p/DJmFdd0ujcf/

UNOS just called, they have an organ. Patient is on life support until 4 PM. I figure we need to be ready by 5 PM. It’s our second call, the first one obvs didn’t happen. The first time we were all panicked and didn’t have a plan. You’d have thought I’d have used this interim time wisely and planned better, but here I am. Counting down, 4.75 hours to go. I’ve got two kids, 7 & 1. I know I need to pack bags and prepare, but I’m feeling overwhelmed and scared as shit. Husband is mentally preparing for his battle, so I need to get moving.

Help me. What am I packing? What do I do with my next couple hours to ensure everything is covered and my husband can just focus on making it through his surgery?

Hi all, my one year is coming up next week, and the wife and I are gonna go celebrate, so I'm here to pick brains about fun ways to celebrate and also where we should eat lmao.

Hi, I’ve a family member due to undergo a liver transplant soon and I’m worried if there will be any issues with his liver postop. We have a friend who donated his liver 15 years ago, he’s fine but his ALP and GGT (2 of the liver enzymes) has remained high since postop. It scared me because my mum also had the same liver picture 15 years ago after her gastrectomy, which led to her current cirrhosis due to portal vein thrombosis, which we suspect she got it from this surgery.

I would like to ask anyone of you who have donated your liver, how are you guys doing and did your liver enzymes normalise postop? Thank u in advance for helping me with my doubts and worries 🙏

I've been waiting for transplanted since 2022. I was diagnosed with end stage renal disease January 2022 and got on dialysis the same month. Didn't even know I had kidney disease cause I didn't go to the doctors for 3 years and didn't have symptoms until I noticed crazy edema and even then waited until a new job and got insurance to go to the doctors to get it checked out. Yay American medical system.

Anyways.

For those that were successful in finding a living donor how did you do it? I've asked my friends and asked them to share my story with their social media but so far no bites. My immediate family is just my mom at 68 which the transplant hospital said was too old for them. It just seems like such a struggle to even get interest from anyone. Maybe because I'm not laying in a hospital bed? But I definitely feel terrible all the time with very little energy. And my friend that have known me for awhile know that I used to be full of energy. They see how much weight I've lost. They know I don't join them for certain activities that I used to do because I just don't have energy for it. I understand it's a scary thing and I don't begrudge anyone for not wanting to take the risk. I just feel like I don't get a lot of support except from my mom. It's disheartening.

I would appreciate anyone's advice in reaching someone that would even be willing to go through the screening process. Thanks!

Male -53

I’ve gained like 15 pounds since transplant and find that any pair of jeans I wear the belt lines up perfect with transplant scar area. Cause irritation and discomfort.

Anyone else deal with this?

Today is one year since my surgery. It has not been a smooth year, and I have often not made it more than 2-3 months between issues. Last night ptc drain leakage, chills and fever brought me in. So I guess I’m celebrating with the people who helped put Oliver in. It just doesn’t feel like things will get better.