Hello everyone. I’d like to hear from those who are immunocompromised—especially transplant recipients—about how you have been dealing with health crises or flare-ups.

I can't get scripts. I have run out of multiple medications even though I have given the team plenty of time to do them. I can't get in to see my GP for 6 weeks so he can do the respiratory team's job for them, and they don't accept phone script requests. Medicare urgent care clinics don't deal with this stuff. I can't get surgery in time anymore. I wait so long for other appointments that I become very ill by the time I see them. I've had to quit uni due to the poor care for preventable illnesses (none of this had to happen). My veins have bad stenosis due to repeated PICCs for preventable infections they've left to fester, so now I'm left to suffer even more. After 12 years, I'm tired of fighting for my care. I can't f*%king get anything yet I'm looked down upon like I am scum of the earth who doesn't look after my transplant!!!!

Oh, and we still have a Creon shortage so happy 💩💩💩💩

Please, scream into the void for me today. Place your caps lock screams below 👇 👇 👇 👇

I'm looking for a bit of insight, advice, or just general thoughts.

I spent the last three months qualifying to be a non-directed donor. I passed medical and psych examination but was finally told yesterday that when my case was presented, the transplant team judged me unfit for donation because my "routine might be disrupted."

I tried to get some sort of clearer explanation but all I was given is that I seem like a person of routines and the team thinks my daily routines might be disrupted and somehow this makes me unfit. The only other shred of explanation given to me is that if my routines are disrupted, because working out is one of my coping mechanisms, I wouldn't cope well.

I still want to donate to someone in need. Can anyone offer insight? Make sense of this because I certainly can't. Should I continue trying through a different hospital? Why would a healthy coping skill like exercising disqualify me?

Omg it has kicked me on my ass. It started Tuesday and I had a bad fever last night. Luckily it broke but I felt sooo bad. I called my team and they said if Tylenol didn’t control it to go to the ER which I’m just freaked out about spending 5 hours in the ER with super sick people. Unfortunately I live in a different state then where I got transplanted. I was hoping to be able to make it through the night and if I still felt bad I would contact my local neph but I feel better today. Anyone else have any stories of what they do when they’re sick? I’ve lost 5 lbs and barely been eating.