So What’s It Like Waiting? Who Is Going to Give You a Lung?

I’ve gotten questions in a few different forms within the past few months about how I’m getting my lungs & how long I have wait for them. Since I’m not listed yet (will in November), I do not know the answer of how long my wait will be.  I only plan to make the most of that wait.  

In preparation for my evaluation follow-up appointment, before & after my evaluation I watched a few transplant documentaries to get a better glimpse & insight into the whole experience. For me, knowledge is power.

I like reaching out to people and seeing things as they are. Mentally preparing myself for what is meant to come.  Yet perhaps one of the clearest examples of the ups & downs & “dry runs” (where they call you but the organs cannot be transplanted), came from this article in one of my transplant blogger friend’s Twitter feeds, (thanks again Leslie Franklin).  I’ve had many of my friends post-transplant talk about dry runs & how they make them feel.  Whether it was 1 or multiple, it was an experience unto itself.

This experience is also chronicled in this documentary, Dying To Live.  This is a great window inside transplant & the wait for organs.  I appreciated it because it covered many organs, & many people of various walks of life.

There are also two other films worth watching:  65_RedRoses & The Power of Two (both are available on iTunes and Amazon & other sources).   Both of these center on lung transplantation as a whole, but give good idea of the overall process & also what moved these recipients to make valuable contributions post transplant.  These documentaries while dealing with occasional moments of heaviness are uplifting. I felt better informed of the process & was heartened by the outcomes at points – even though some may differ. I think with what they were given, all of the ladies in these documentaries tried to make an impact & really connected with others in the process.

The other passing question I seem to get from some family & friends is…who is donating or giving a lung? In my case, my lungs cannot & will not come from friends or family. They’ll be coming from my donor when the time arrives, after they have left the earth & their specific wish to be a donor will be realized.

I understand why people offer or ask about the possibility of giving someone a lung. There are living lobar lung transplants done; but they are seemingly fewer & further between. I struggled in researching to find many examples.

One will see why when reading about it on Transplant Living. Also, as you can see in this case study, it does work in some cases  — but not in all.   But it takes even more coordination &  matching than with the current process or even designing it like a kidney exchange model (for example) with all the matching it entails.

I once did know a woman with LAM who had one because she had lobes from two family members that matched. However, she passed from an unexpected complication & from that time forward, I really ceased to hear much of anything of these “living lobar” transplants.  This was not surprising however as lungs do fail to stay viable outside the body as long as other organs (general rule).

So my lungs will come in due course, but I will not be receiving from someone I know or someone alive.  There are valid reasons for this, outside the main issue of mine being a double, not single lung transplant.

I just felt it important to address because I have had more than one friend & family member offer & step up; but in my case & others it is not as simple as that.  It would be nice if it were that simple.

I don’t know how long I’ll have to wait for my new lungs to come, but I do know they will come & when the timing is meant. Until then, I’ll do my best to take care these ones so when they’re done working in me, I can donate them to research & so they can continue to work on my rare diseases.

They’ll live on, as will I…with a purpose that was meant for each.

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