Re: Pregnancy + IPF + Transplant

[Guest guest]

Hi Hillary,

I got goose bumps reading your post about wanting a baby. We are all inflicted with a horrible disease, but the disease itself has inspired us all to live the best and fullest live we can. We all do somethings that we know aren't good for us, but we do it anyway, BECAUSE WE STILL CAN!! It sounds like you have a terrific family support system and wonderful friends and I know you are not soliciting our approval, but don't forget we are only here one time---- so if it feels right and the DR. says ok ---GO FOR IT!!

G. UIP/IPF 5/07 AZ.

[Guest guest]

Hillary

sorry you need to be here, but welcome to the group. Pink Joyce IPF 3/06 Pennsylvania

Subject: Pregnancy + IPF + TransplantTo: Breathe-Support Date: Tuesday, November 4, 2008, 12:20 PM

Hi all,I'm new to the forum, and wanted to introduce myself. My name is Hillary, I live in the Bay Area in California, and I was diagnosed with IPF at age 19. It's been 10 years since then, and I'm still here. In fact, at DX I was around 36% TLC, and I maintained stats in the 30s until last year, when everything started to drop. Now I come in around 23%. Because of my decline, my doctors are anxious to put my on the list for a double lung transplant. I've taken the TX class, met with the social worker, etc. I am supposed to fly back to my hospital in Seattle to do the rest of the pre-transplant workup in January, and then, I guess, they'll take my case to the board and get me on the list.The problem is, I don't want to do it. The TX class made me so scared, and feel so strongly that my life would be even more limited post-transplant than it is now. Currently I get around without supplemental oxygen

(unless I go on a hike or a long walk). I've had a lot of trouble keeping infections at bay in my elbows, feet, and hands, which has put me in the hospital now and then-- and it seems like THAT battle will get worse after TX, except it will also threaten my graft and my life.The other major factor is that I very much want to have a child. I've done some research, and it sounds like that is occasionally done after lung transplant, but with terrible results. Almost all mothers lose their graft within 2 years. 80 percent have some kind of rejection episode during the pregnancy... it sounds like I would die sooner. Though I've been told not to do so, I am thinking of getting pregnant soon, before transplant. Of course, I'd meet with a high-risk obstetrician and reduce whatever meds would make a pregnancy unsafe, but I'd still be running some big risks. At this point, I just don't know what to do. I've made an

appointment at Stanford for another opinion, (something my doc will almost certainly see as a betrayal-- I've gone off the reservation before and always get in trouble with him-- as if his ego is more important than my life!). Generally, my experience with my pulmonologist is a very good one-- but in this case he's just certain that it is time for the transplant, and because I'm so young he can't imagine why i would refuse it. And I get so emotional in his office that I can't really talk about it.Any words of wisdom out there? Or experience with pregnancy? Or with transplant at my age? May you all be well,Hillary