[Mel L]

Hi all, I'm new to the forum. I'm Mel, and I'll be 21 next month (hooray!).

I was diagnosed with Aplastic Anemia when I was 14. There was talk of a transplant then, but I flat-out refused and went the ATG route. It went well- blessedly uneventful. I went back to school, and my counts were pretty good... until thyroid cancer struck at 17, the day before my high school graduation. I had my thyroid removed and did I-131 treatment with the isolation over the summer, was declared cancer free, then went on my merry way to college. I've gotten checked every year since then, and all the scans come back fine, and my counts have stayed pretty level in the low-normal range.

I'm writing this because last summer, I was diagnosed with PNH. My clone was initially really low, and I was totally asymptomatic, but that... hasn't been the case recently. I have a BMB scheduled for next week and I'm dreading it. I have been staunchly against transplant from the start because I didn't want to put my life on hold, but now it's looking like it's my only option.

And I'm scared. Because my counts aren't horrible (wbc holds at 4, platelets at 75ish) I'm allowed to go back to school, and I'll graduate in November. But as soon as that's done, a transplant is in my future. My sister would be my donor.

I'm ready to deal with this like an adult, but I have a lot of questions. I've found that hearing about other peoples' experiences really helps me.

For those of you who were working before transplant, did you keep your job and just go on leave? Did you have to quit? Did they fire you? Is that even legal, for them to fire you for something like this?

How long did it take for you to lose your hair? Did you lose it all, or just some? Do you HAVE to have a Hickman line? Because I've been there and done that, and they suck, especially in Florida summers. Does cyclosporine still smell like skunk?

I'm so tired of fighting. Is it even worth it?