new lungs

M

musclemania70

New member
I haven't been here for a while but I wanted to share I got new lungs on jan 4!

I highly encourage anyone who has low lung function to be evaluated if you even consider transplant as an option. I had no idea it was time. I went in the hosp thinking it was a reg iv treatment but I went downhill fast. I was listed within a few weeks and once I got on the list, I had new lungs in less than two weeks.

Please don't wait! Get your evaluation done so you will be ready when the time comes!
 
B

BreathinSteven

Guest
That's AWESOME, Musclemania!!! I'm so happy for you... I hope your recovery is going freaking awesome!!!

And - it's amazing how short your journey was... That's not the usual course - but I'm so glad that happened for you... Listing within a few weeks, and new lungs in a few weeks more is amazing! For so many of us - the listing process can be very drawn out... It can take months, and should they find things they are concerned about - new groups of tests can add weeks or months onto that cycle. It took between 2 & 3 months for me to go through the testing and finally be listed. And then I waited 31 months for my beautiful, new lungs. Granted - that was prior to the LAS allocation priority system in 2005, but even now the wait can be between 1 and 2 years for normal situations. I'm so glad you got what you needed as quickly as you did!

And - I hope you have a long, happy journey! Last Monday, I celebrated 13 years with my beautiful, new lungs. Last Friday, I celebrated my 53rd birthday. I wasn't diagnosed with my CF until the day of my 13th birthday - and I have no doubt that my family, and I, thought that it was unlikely that I'd live beyond my teens. But, I've been very lucky... I hope you have a similar journey!

Love, Steve
 
A

azdesertrat

New member
Congratulations! I'm glad all went well for you. I wish you a long, happy post-trans life. My only advice, make sure you take all your meds at the appropriate time.
DO NOT MISS ANY DOSES OF YOUR ANTI-REJECTION MEDS!
I've been told that just about every case of rejection is because the person didn't take their meds regimen religiously. Do that & you should be fine.
Again, congratulations!
 
L

LittleLab4CF

Super Moderator
Wonderful to hear you have a new shot at life. Maybe we can out do Kalydeco and put a genetic end to this genetic problem

LL
 
R

randomgirl

New member
I got my transplant at the end of November but I also got a liver along with lungs. It's definitely awesome being able to walk more without getting out of breath with oxygen.
 
J

jchelle

New member
so i have a question, does the cf return after you get the transplant? my husband has it, but they havent said anything about a transplant, but he has thought about it but was curious of how long it takes for the cf to return if that makes any sense at all..
 
You must log in or register to reply here.
Top