It’s been 3 months since I’ve got my new lungs.
Before the surgery I was incredibly scared at what the aftermath of the transplant would be as I had no idea how it would feel. Didn’t really help that there are very little hht and avm patients who’ve received lung transplants as treatment. I never realized how sick I was before until after I was home.
I got out of the hospital around 25 days after transplant, after at first being told we would stay a minimum of 5 months in hospital. Only a couple days after getting home did I notice how difficult it was to function before. Even doing simple tasks used to eliminate my eyesight for at least 5 minutes and I had severe tinnitus, however now I’ve experienced none of this. O2 sats are high 90’s like normal, as opposed to being in the low 60s like before. The scar is healing nicely, and while still a little sensitive I can’t feel any pain… or anything at all which is an odd feeling to have running across your chest, however I was assured this is completely normal.
I have noticed that the hht is starting to disappear after transplant. My chest and backyard to be covered in small avm’s, but 80% of them are gone. Same thing in my lips, and everywhere else on my skin. I did develop one small avm in the scar however it’s only about .5mm big. The 2 avms in my brain, which are about 1cm each, have started to shrink, and of course no avms in the lungs.
Looking at pictures of the old pair made me realize how many avms there were. Even just on the surface, I counted upwards of 120 avms ranging from 2-5cm. It’s really interesting to both me and the doctors to see the side effects of having higher sats, including my finger and toe nails, which once were bent and clubbed, but are now straightening out which is slightly painful.
Somehow I have defied all the odds, no rejection at all, no sickness, overall extremely healthy, and to any random person I would be seen as normal and healthy.
Looking at the original tests from when I was diagnosed 5 and a half years ago, we’ve remembered that the genetic mutation causing the hht is a new one which hasn’t been documented before (lucky me!), however they are running many severe tests on my old lungs in Toronto to help with avm and hht research everywhere else.
Thanks for reading, stay healthy everyone!
Hi Toaster, I’m glad you’re healing up nicely and out of the hospital before expected. Hospitals seem to me are an added risk and discomfort-- sometimes not needed. Plus, if it’s safe, it’s much nicer to sleep in your own bed.
It’s noble that you’re helping w/ AVM research by donating your old lungs. In that way you may be saving future lives/issues. Best wishes, Greg
Great to hear your progress thus far, awesome! Great on the research side, that will certainly help many people in the future. Take Care, John
This is mind-blowing! I don’t remember if you said you were actively contemplating a transplant but it is clearly one of the scariest things ever to consider. WELL DONE for daring and getting through it! You’ve made my day (actually more than my day!)
I’m sure none of us appreciate how poorly we are when these things accumulate over a long time, so it is probably not surprising that you’re so much better than you were.
Do remember to check in with us from time to time because we all know that there’s a bunch of @PulmonaryHeartHHT people here who will want to know how you’re getting on.
Fantastic! 
Richard