Monday, October 21, 2013

A long list of requirements....

I really have no idea what comes to mind when people hear the sentence "She needs a double lung transplant". Mainly because I was too young to remember what I thought, if I even knew what it meant, the first time I heard it. Having my mom be a 'transplant recipient' has been just 'part of our life' for most of my life. But I'm pretty sure that very few of them have any realistic idea what all it I'm going to tell you.

Today, I'm going to give you the basic details of what a lung transplant means, requires, looks like, etc in someone's life. There are 3 'phases' of lung transplant: Pre, Surgery, and Post. 

Pre-Transplant is the phase from the time you are diagnosed with a terminal lung disease up until you actually get a transplant. It can last days, months or years, depending on the condition. Some people (like CF patients) may know for many years that they'll likely need a transplant 'some day' and will be seen by pulmonologists routinely to track their lung disease. Some people begin having shortness of breath and can take years to go down to the point of needing to pursue transplant. Others have sudden drop in lung function from their lung disease, and very suddenly need a transplant.

The pre-transplant phase involves applying to a transplant program, with the goal of being accepted for evaluation. Once accepted there are 5-10 days worth of testing they have to do. They basically check EVERY other part of your body to make sure that you can survive the surgery and tolerate the medications afterword. Heart caths, kidney function tests, multiple esophagus tests, blood tests, EKGs, liver function tests and multiple cancer screenings, just to name a few. Once those are done, and reviewed, they either accept or reject you from the program.

If accepted there are a dozen or so requirements to meet before being transplanted. The most insane of those is relocating to less than 30 minutes from the hospital that will be performing the surgery. Since most people don't live within 30 minutes of the 20 or so transplant centers in the country, many patients have to do that. (LIKE US!) The rest are just tedious, daily things. The first of which is Pulmonary Rehab. Pulmonary Rehab is 3 hours a day, including 20 minutes of walking, 20 minutes of biking, 20 minutes of weights and 45 minutes of floor exercises, 5-6 days a week. The second is 'education'. They have lectures, and classes daily or weekly to prepare you for the surgery, the hospital stay and life after transplant. The third is routine monitoring of your health with regular blood tests, and doctor visits. 

Life becomes about the getting to transplant. Its all consuming and enormous and seems like it will never end, but it does. This part ends, and life gets back to being 'life' instead of being 'pre-transplant phase'.

And the rest, I'll tell you about next time!

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