My dry run on July 2 was also a good test to figure out the process of notifying my LAM research team about donating my old lung tissue & organs to research into my rare diseases.

I had arranged & signed a consent for this shortly after I found out I needed a transplant evaluation.  This was around the same time I was laying out paperwork for my advanced directives, healthcare power of attorney/proxy, & my will.

I was fortunate I have a friend who is a lawyer but is also a transplant recipient. He was able to guide me through so many questions that came up for me when I tried to outline something myself a few years back.   He made sure the consents I signed for this donation were part of the package.

Even though I provided this all ahead of time to the hospital & they have it on file, I was asked to provide copies of my advanced directives & such out front.

This is something on my to-do list this week to have an extra copy of all of this packed & good to go in case they ask again since this wasn’t part of my transplant reporting instructions.

I do keep copies on my computer at all times too in addition to copies in a safe that my bestie/caregiver can access.

That aside, once we were on the road, I called my researcher I was donating my lungs to. I let her know that this was a situation where it was very probable it could be a dry run, but also a small chance that I might be transplanted.

I knew the coordination on her end would take some time as well & figured she’d appreciate the extra lead time.

She had already lined up another researcher in my hospital with her own lab I had met a few times before to help her with the collection.

She texted me her number & this researcher met us at the hospital early in the process.

I didn’t begrudge this because I knew sometimes even with everything laid out, researchers do have many layers of staff to communicate with. They have to repeat the message consistently in the hopes of getting through to the surgeon & others to make this happen.

Especially in my case, where if my main transplant surgeon is already booked or unavailable, another could/will take over.

It’s best they are both aware of my wishes if they haven’t already been communicated.

I let my researcher tag along until they had some kind of estimate to give her as to how long this process would take & I was thoroughly satisfied they’d keep her in the loop.

I let her know later as soon as I got my OR time so she could be on standby & be prepared in case.

This was less of an issue in PACU (surgical prep) than I thought it would be. (It was more or less working with the admitting staff on the transplant floor).

I even heard the organ coordinator mention my wishes in a phone call, much to my relief.

I think the next time, I’ll call when I’m at the hospital. Then keep relaying messages once I have an OR (operating room) time.

That OR window may not be as large next time either, so I do try to give as much notice as possible, but at least both the researcher & I have some kind of game plan to follow based on the last dry run.

I’m posting this because I know many people with my rare diseases are interested in donating tissue for research but are unsure how to go about it.

All I did to start the process was make contact with the nonprofit organization (in my case I contacted both The LAM Foundation & TS Alliance since there’s a lot of collaboration & shared research.)

There are different options for both diseases & organizations. That choice is very individual.  Gifts can be made to a tissue bank or a dedicated researcher. There is no right or wrong answer or way to donate surgical gifts.

I chose to make mine to the researcher I did because I also know she shares the samples with other researchers to further overall research efforts for both diseases.  I’ve also met her & know her commitment to both patients & research is equally strong.    

Both organizations were aware of my wishes & gave me permission & contact information to arrange this with my researchers.

The researchers provided consents for me to sign to kick off the process.

Once my transplant date approached, the researchers were good about contacting me with their cell numbers so I could call them to notify them when the time came.

I then made a few calls to them enroute or as I received information & they took it from there.

They were great team players & I worried very little about this once I contacted them to let them know.  This is as it should be.

I made one small request. That when my lung transplant happens, I get pictures of my old lungs for closure.

It’s one thing to see years of imaging of them  but I know other transplant recipients had told me those pictures really helped them in their transplant coping process. I tend to agree.

A loss is a loss, whether it be an organ or a loved one.

Ultimately, it’s never easy, period.

But this was one thing that helped me let go too.

I felt better knowing that my original lungs wouldn’t rot away or be discarded as medical waste. They could be shared & studied to hopefully help others.