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cloventokes15 karma

A friend of mine had cystic fibrosis, but lost the fight back in october and is now breathing easy. She'd had a double lung transplant in her early 20s, and had rejection under control for years, until late last year when it reared it's ugly head. She was one of the girls from the documentary 65_redroses.

I'm not too familiar with the medications, I only know she was on pred and something else. What meds will you be on/are on for rejection?

cloventokes10 karma

That last part of your reply made me tear up. We were very close, and it looked like things were going in the right direction, when I got the text the day after....

taking it one day at a time is the best way, even years after a transplant. Kina lived her life to the fullest, doing just that. <3 I hope you have the pleasure of doing the same <3

cloventokes8 karma

I have gastroparesis too, not as extreme as this, but I've had it my whole life. I only got diagnosed in 2014 because I was fed up with being nauseated all the time. It was pretty severe as a child, and I was super underweight, like literal skin and bones from 1st to 5th or 6th grade. It went into remission for a few years after a abdominal surgery for an unrelated problem (perforated colon, lots of fun there) but came back junior/senior year of high school.

I've been dealing with it on and off ever since, but it has been particularly bad these past few years. I had another surgery to remove my left liver lobe (estrogen sensitive fatty tumors, also lots of fun) which triggered a HORRIBLE flare. I couldn't eat more than a literal handful of solid food a day and depended on Boosts and Ensures for a few months. I lost 30lbs in just as many days which is a lot for someone my size.

Since then I've had nausea every day, sometimes all day. I have medication I can take but it doesn't have a 100% success rate.

Growing up I always had Pepto pills and Gaviscon on me at all times. "Everyone gets a little nauseous or ill sometimes" was a frequent thing I would hear from my parents.

cloventokes2 karma

Just out of curiosity, what were your pfts prior to surgery? (for those wondering, pft stands for pulmonary function test)