Listed for double lung transplant

Today I was listed for double lung transplant. August 6th. Where this will take me I don't know, but I am eager to find out.

When will that call come?

The whole process was easy. Martin and I met with one of the 5 surgeons to sign the consent forms. Dr.P was really nice. We liked him a lot, and saw that he has a great passion for his field. He said I am a low risk candidate. Which is good. On paper I look like an ideal candidate. Meaning I don't have anything visibly wrong with me that would hinder the success of the operation.

I was given a few study forms to fill out. I am going to sign and participate in all of them. The first is a bone marrow study, allowing them to take a sample of my bone marrow for research. It leaks out when they cut into my breast bone, and will be wasted anyhow. What they are looking for is stem cells that are found in the bone marrow and how they can be used to grow lung tissue. Love it, think that's the future of lung transplant and CF treatment.

The second study had to do with a new anti-rejection drug. You get the actual drug or a placebo, and it's one IV infusion in the first week post-op. Again, no skin off my nose, and you might get this new drug that has done some good things so far. Bonus, I signed.

The last is the one we thought about, and have decided that it is something I will do, but it required more thought and consideration. It consists of using something called a EX VIVO lung perfusion for an improved assessment of donor lungs, in hopes to use lungs that would otherwise not be used in transplant. Because 4/5 donor lungs are not used, many due to the fact that they cannot be properly assessed while still inside the deceased donor. Using this EX VIVO system, they will be able to further assess the lung, and might be able to use it in my transplant. Dr.P said there are also added benefits of keeping the lungs at body temperature, have them 'work' and thus recuperate from the trauma of 'death' which is substantial. The most important thing to consider there, is that this may really shorten my wait for lungs, especially in my situation having a rare blood type.

12 Patients have had their lungs transplanted after their lungs have been assessed through the EX VIVO system. Lungs that otherwise would not have been able to be used due to the inability to assess them in their original donor bodies. The system is approved in Europe, and is still experimental in Canada.

Risks are that they don't know how this will affect the lungs long term. Or that I may have an allergic reaction to the Steen Solution. They say these risks are unlikely, but there may be risks that they don't know about.

The benefits are that Ex Vivo perfusion Steen solution will lead to decreased acute lung injury rates after transplantation, as well as a shorter wait, and of course that information learned from this study might help other people waiting for lung tx in the future.

After careful consideration, I will consent to all 3 studies. I think they might benefit me, and I know they will benefit other people in the future. This is all exciting stuff!!

So that's it. Here I am . Relieved. My next few posts have to be about little Scarlett....lots to tell. I've been ignoring her in my blog lately and have to catch up. She's doing great.

Have a glass (or an extra glass) of wine for dinner tonight in celebration. Today is a big day.