Rehab Buddies

Some of my rehab buddies and I!
from left: Celeste, Richard, me, Jason, Arlene, Richard, Beau

I have met some of the neatest people during what is now becoming my tenure at Duke's Cardiopulmonary Rehab. I especially like connecting with other cystics in person - the vast majority of my contact with CF people has been over the internet - which is kind of funny because I spent the first 20 or so years of my life mostly wanting to avoid them altogether!

It's interesting to meet people with other pulmonary diseases as well. (Idiopathic Pulmonary Fibrosis, Alpha-1 Antitrypsin Deficiency, Sarcoidosis, COPD, Black Lung Disease and Bronchiolitis Obliterans Syndrome, also known as end-stage lung rejection, encompasses most of them.) Since rehab has become such a big part of my life I thought I would dedicate a blog to telling you a little more about it. I have already written (somewhat unfondly) about the mental and physical challenges of rehab, so this will more about the people.

Sandra walking the indoor track

There are unique bonds that form in rehab - as is probably the case with any difficult situation into which people are thrust for any extent of time. Our struggles differ, yet we have much in common. In a way these relationships are transient but they will always be a permanent part of my mental transplant scrap book. I know some of these people will be lifelong friends.

There is a special bond with people whom with you share the same disease. I've met quite a few people with CF at various stages of pre- and post-surgery rehabilitation. I know it is hard for outsiders to understand why we can become so attached when there is so much loss and hardship in our community. All I can say is that for myself and many of the other cystics I've come across, it's all worth it.

A couple of super cystic women - Shawna

Here's a quick run down of some of the cystics I've gotten to know the best:

• two I have seen both before and after transplant
• three post-transplant Duke ECMO/life flighted/lives saved at the last minute miracle women
• two in situations similar to mine, pre-transplant (one listed, one still waiting to be listed)
• a woman who has been waiting 6 months for both lungs and a liver
• a guy my age who passed away before he was able to get himself in good enough shape to be listed
• a couple of others a bit before my time who I know less about but about whom I'd like to know more.

People come to Duke from all over! New York, Mississippi, Maine, New Jersey, North Dakota, Arizona and Virginia, Colorado, South Carolina, New Hampshire and overseas from Israel and Saudi Arabia!

So that is a snapshot of my rehab social life - hope you enjoyed it!