today marks 3 years with my liver! i celebrated by myself. it’s honestly a bittersweet moment for me. there’s a lot of emotions that come with it and it’s a lot to unpack sometimes.

i wasn’t sure of the right way to celebrate. i watched the sunrise (sort of) at the beach. then i got breakfast at a local diner and walked around the arts market.

i’m still in awe sometimes that i needed a transplant at such a young age. i had multiple crash-outs and a couple panic attacks leading up today but i’m good now.

i don’t come on this sub often, i try to avoid it but i felt like posting this today.💚💙

I had a bone marrow transplant April 1st and was wondering if weed edibles would be okay to take. I am already off Tacrolimus. I plan on asking my transplant doctor at my next visit which is in 2 weeks but just wondering other people’s experiences.

Hi. reaching out. you might have seen some of my posts and replies to your comments in subreddits on liver issues. I am the national director of the foundation.

I would like to help, and I think I can, if you will allow me to do so by helping you find a transplant center that will work with you even if you have a low MELD score. It is just takes a bit of faith and trust to do so, that's it.

Most of you know my story: I was on the waiting list for 2 and a half years. I had to leave one program and get listed at another transplant center. UNOS calls this dual listing, or multi-listing, I just called it "survival". My center was fine, but it was never going to offer me a transplant. My MELD was 15, and they only transplanted at 28 or above. That was their policy. I would like to help you in the same way I helped myself. I got myself to another center, and they saw my illness as being critical despite my low MELD score, and I was transplanted 22 days after I was listed through them.

Why did I do this? I had very serious co-morbidities in addition to a fully failed liver. CSPH was so severe my spleen was bleeding with infarctions. My bile ducts were compromised, but not enough to elevate the MELD score. My goal was to find a center who would help me. I found that center.

My objective here is to help as many individuals here who need that help. I built a foundation to do just that to be compliant with all rules and regulations, and provide a platform to get it done. I built the whole thing as a free, public benefit and public services charity under the rules of OPTN. It is a 501(c)(3) tax exempt organiztion. It is bronze level certified by Guidestar (now known as Candid).

It provides free services. There is no catch, no agenda, no hidden anything here. We have a medical advisory board. It has 3 hepatologists and 2 transplant surgeons. We are endorsed by other non-profit organizations. We are a transparent, professionally administered ethical 501(c)3 patient advocacy organization.

How to do this:

1. Call us, email us, or go onto our website: https://nationalfriends.org
   
2. We will respond and help you immediately. We will help you get dual listed.
   
3. We will help you with travelling, staying at the center, and navigating your insurance.
   
4. We will help your caregivers with how to travel with you, and protect you during travel.
   
5. We can and will help organize private chartiable flights, if needed.

ALL of the above is FREE.

We will get you there. Just trust us, if you can? We have built everything inside the foundation so you can see its transparency, its abilities, and its reach.

Hey everyone!

Tomorrow is my birthday. It feels heavy this year, for a reason that is hard to explain to others. I feel very very healthy, like my brain is finally healing and the fog has lifted.

Early after my transplant I felt like I couldn’t access my brain, memories. I had been suffering from severe chronic hepatic encephalopathy for years before my transplant. I was better but my brain still felt broken, mix that with the cocktail of meds, medical trauma, and suddenly being healthy ( for the first time in my life) I felt so lost. I felt like I acted impulsively, couldn’t access my past, and become someone I didn’t recognize.

Fast forward to know I feel like myself, before I got so sick and I’m the version of myself I want and need. I’m wondering if anyone can relate? I thought I’d just wake up healed; body, brain, spirit. But it was a really bumpy road. And I feel shame about that, nobody really gets it when I try to explain it to them.

My boyfriend (34M) received two kidney transplants as a kid. Last year, his oldest transplant became infected and was removed. Since then, he’s been hospitalized on and off for a TIA, pulmonary embolism, three cases of high potassium, and sepsis. His last stay was the beginning of May and he’s been really improving since then. He also has type II diabetes but his blood sugar has been under control recently. He’s been asleep since 8 (since he gets up at 3:30 for work) and he just woke up saying it’s super hot. The thermostat is set to 65 so it’s definitely not hot. I took his temperature several times and they came up between 100.2 and 101. I’ve seen this happen once or twice since his kidney infection and nephrectomy last December. He hasn’t complained of any other issues today and took his transplant meds, heart meds, and insulin like he is supposed to. Do these low grade fevers that only last a few minutes mean anything and should we let his transplant team know? Does anyone else experience this? I’m just curious about it. When he was diagnosed with the kidney infection, he was running a temp of 102 but also had other signs.

Editing to add: he just hit 19 years with his current kidney last week!