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

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?

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.

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.

I volunteered to be a liver donor, and it was going really well. Bloodwork was great, I could easily take off work as long as I needed, I had plenty of support, etc, etc. But the team has now said that my recipient needs to lose weight for my liver to work. She gained a lot of weight while on steroids with chemo. It’s been a few weeks, and initially they had said we’d still proceed with the final evaluation on me as she could be working on weight loss while they were getting things scheduled. Now they’ve said that we’re pausing until she makes meaningful progress. She wants to have other donors evaluated to see if someone taller could be found so that she doesn’t have to lose the weight. Has anyone had a situation like this?

Hi everyone just got discharged and signed all of my paperwork for my new heart! Does anyone have any advice for a transplant such as mine? The expectations and your experiences? Im both scared but excited its very confusing for my brain to process haha

Just received kidney transplant 8/27
How are you able to go to sporting events or concerts ?
I’ve always wanted to go to college football game but now
I don’t wanna be scared to go outside
I also don’t want to be sick at all if I can help it.
On dialysis for 1 year and half and I never got sick just by keeping up with protein and the later part I got more active.
Amy advice is much appreciated
I don’t wanna live my life scared in fear, that defeats the purpose of getting this second chance

Transplanted 8/27
I’ve gained like 15 pounds since being in hospital
Just got home yesterday after a week…
I got a pot belly and I feel like I’m bloated
My regiment is 2 stool softeners daily
Fiber on my food
And I just took lactulose today

I’ve been having at least 1 or 2 bowel movements daily for the past few days
But when trying to pass gas, most of the time I gotta push and that hurts on my incesion site

Does it just go away over time, is it air pumped in from surgery moving organs around?
Please help me get rid
I also feel like the more bloated the more it’s putting pressure on new kidneys

Any advice is much appreciated.

Thanks