Friday, July 25, 2014


It’s a long (to say the least) and winding road to becoming a Transplant Patient. I cannot believe August will be here next week and just since November, what I consider a short period of time,  I got so sick that I was told I needed a Lung Transplant or I was out of options.

So your doctor goes into overdrive trying to get you evaluated to see if the either of the only two hospitals where I live will even consider accepting me as a transplant candidate. It’s not enough to just NEED a transplant. Nope. You’ve got to EARN your spot and it isn’t easy. 

Thus begins the Ups & Downs of being a Transplant Patient. Months of trying to even get a proper diagnosis. Then realizing that I am facing life and death. Better buckle up; this is going to be a bumpy ride.

Already being on Disability for another incurable, painful, difficult to treat medical condition, I thought I had figured out how to navigate being a patient. Learned how to cope with chronic disease. This was a whole new deal.

Emotions run the gamut from the depths of being told you will die unless you get a lung transplant to tears of joy when the second hospital finally, finally says they will accept you for a transplant and you are now officially listed with UNOS for a Lung Transplant! 

The Transplant Teams are very honest about the journey you are about to take. Brutally honest. It’s scary. So there goes that roller coaster again. Can I please just get off and take a break? 

There are no breaks. There is always a test or doctor appointment, Rehab and more to deal with. But I am now part of a new community of others just like me. We are all waiting for a Transplant. I have had the pleasure of meeting other Lung Transplant Candidates and you feel a kinship. Just like I did when I was diagnosed with IC and began writing this Blog, being an IC Patient Advocate; we feel a connection to those facing the same thing we face. We are somehow connected.

We have been told to expect “false alarms” when it comes to having a transplant. We’ll get that call that we’ve been waiting for, go to the hospital, get prepped for surgery only to find at the last minute there is something unacceptable about the organ that was to be donated and the transplant is cancelled and we must be sent home. That just happened to a new Lung Transplant friend of mine. Talk about the Ups & Downs! All in one day! That’s rough!

Then there’s the nice man I met at Rehab who sat next to me working out during class. We chatted a little and my Mother and his Wife would have tea together while we were in class. I learned he’d been waiting 10 months for his Lung Transplant. I was absent from Rehab for 1 week for a procedure and when I returned, he wasn’t there. Could it be? YES! He got his transplant and that’s why he’s not at Rehab!

I hardly know him, but I was overjoyed for him and his family! I hope to hear how he is doing and get a good report. 

I have to have yet another test on Monday and a doctor appointment at two different locations. These are exhausting days for me but I will do what I must. I’m trying to learn to roll with the punches; it’s a work in progress.

Yes, there are many Ups and Downs in the life of a Transplant Patient. That’s true of many people with many illnesses. But the journey through Transplant it unique, I think.

We know there is a way save us, but can we get it in time? So we wait and we ride that roller coaster of Ups & Downs and hold on tight to our support team!

I never liked roller coasters or any rides at the amusement park. They make me sick. That’s nothing new. So you can imagine being on a roller coaster that is a Transplant Patient for someone like me is no small feat. But I’m working on it. I hate waiting, but wait I must. 

Buckle up, the roller coaster is ready to take off - again - and the Ups and Downs are ever present!

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