Wednesday, November 4, 2009

Two Years Later

It's been two years since I started this DIPNECH blog and now there is a small group of us. I hope you're all doing well.

It's been a challenging past few months. My pulmonologist had long been urging me to undergo workup for a lung transplant as a last resort in the event (e.g., an infection) of no other options. So I embarked on a rather grueling 4-day battery of tests. Ive still got some other peripheral things that need to be done but I'm now in the program, including attending seminars (12 per year are required) that have only further convinced me that I DO NOT wish to have a lung transplant. The five-year survival based on UNOS data is only about 50%. The Columbia program claims 60%. While my lung allocation score puts me in the range of eligible patients, we all agree that my chances of being around in 5 years remain better than that.

Interestingly, the transplant surgeon told me that my main goal should be to avoid, or at least postpone as long as possible, a lung transplant. How? Supplemental oxygen. I've long known that I'm desaturated much of the time but had resisted facing it until the cardiac catheterization showed a small increase in the pressure in the pulmonary artery. The human body is just not happy with inadequate oxygen.

So, I've been using oxygen now, even at work (I don't need it when I'm just sitting, only when I'm up walking around). It's been quite a quandry how to handle this. I've been with the same large pharmaceutical company as a biostatistician in various therapeutic areas for 17 years now, so I know a lot of people. But I spent much of that time working hard to hide my problems, and was fairly successful. How do I avoid that moment of shock when people see me with oxygen? I'm still working on that.

An incident a few days ago made me think about posting to this blog again. It was a beautiful warm fall day and I felt like a nice bowl of soup for lunch, so I put on my oxygen and headed outside to the local soup place a block away. At the corner I ran into someone who retired as a research scientist from the company more than 10 years ago and I had not seen for a long time. She was always very fashionable, and as expected her hair and makeup were perfect. My wardrobe is Eileen Fisher and LL Bean, and I take pride in owning no makeup. She was a bit taken aback by the oxygen but I reminded her that even when we had worked together I had pulmonary problems. She went on to talk about her life and as the light turned and we were about to part ways she said "well, I must say I have seen you looking prettier in the past without that thing on your face."

I wouldn't believe this if it didn't happen to me. Does she think I don't look in the mirror? Believe me, nasal cannulas will never be a fashion statement. But what's funny is that I am feeling so much better with the oxygen. I can actually get around and do things for myself without constantly feeling short of breath. In fact, until bringing the oxygen to work I had not even considered walking to Starbuck's or the soup place because it has become too difficult to handle the relatively short but uphill walk back to the building where my office is.

The good news is that I enjoyed that cup of soup. And I intend to follow the advice of the transplant surgeon and avoid letting him anywhere near my lungs!

Have any of you been worked up for lung transplantation? Are any of you needing supplemental oxygen?

I really would like to compile some data on all of us. Stay tuned. I'm still interested in the pregnancy question. One of you answered and said you had hypertension in pregnancy. Was pre-eclampsia diagnosed? That was what complicated my two pregnancies. Our first child was born at 28 weeks. The second time we made it to 36 weeks but I was in bed for nearly 4 months, the last one in the hospital. [Aside: Those two wonderful daughters have now had two successful pregnancies each. The older one had mild hypertension at 37-38 weeks and both times was induced a bit early in consideration of her family history.] I was also fascinated to read what one of you wrote about menopause. I had thought I was lucky and had breezed through with exercise and a vegetarian diet. Now I realize that Sandostatin may have been the secret to that!

Be well, and keep writing.