Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Hello. My name is Jen and I'm 37y/o. I was diagnosed w/ IPF in 08/06 likely due to chemo/radiation from my allogeneic stem cell transplants in 08/98 and 10/98 secondary to Acute Myelogenous Leukemia. My brother was my donor who was a perfect match 6/6 antigens. In 09/99 I developed PCP pneumonia 11 months s/p STC txp and was intubated for 11 days. I was dx'd with ARDS etc. which could've also lead to to IPF. Not to mention chronic GVHD (graft vs host disease) that could or could not be in my lungs. So...with all that info we are calling it IPF. I am currently listed for double lung txp (pretty pink puffers) and have been waiting since 01/23/08. It seems like such a long journey, however in the big scheme of things it has not been all that long ago that I was diagnosed. I have been on oxygen since 04/07, but didn't start to really wear it 24/7 until 05/07 then I just had to buck up and do it. Kim - I saw your posting and although I don't wish IPF on anyone but I am pleased to see that there is another person like me on this group. I would love to hear more. Over the years I have met many BMT survivors and organ txp survivors but never someone who has had both. It is nice to know that I'm not alone. I have been following the board for a few days and I'm impressed with all of the knowledge and support. Thanks for being available. I use liquid o2. I wear my canula down, but wore it up for a long time until I found the softech canulas which fit me the best. Much regard. Jen AML 04/08, SCtxp 08/98 & 10/98, IPF 08/06. STL, MO waiting for txp. Reside in Houston, TX Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.