Now that Gwyneth Rose is here, the focus of our life takes a huge "reverse" step back to around the first of September when we were preparing for the physical therapy that would help place Tricia on the double lung transplant list.
Tricia has already completed the required number of days of PT, but with the journey through past few months of pregnancy, a few new steps are before us now:
> Getting off of the ventilator, which means renewed strength/function of her lungs.
> Proving to the Duke transplant team that Tricia is healthy enough to be placed on the list. There is a small window of opportunity in which a patient must be sick enough to warrant a transplant, but healthy enough to have a good chance of surviving the surgery and achieve an improvement of health post surgery.
One of the transplant doctors told us (just before Gwyneth arrived last week) that it would probably be at least a minimum of 2-3 months before Tricia would be healthy enough to be placed on the transplant list. Candidates are placed on the list in order of the greatest need. We've known people who have been listed for less than 24 hours before receiving the call, and others who have been listed for many months. Tricia has two things going for her concerning getting her new lungs quickly:
> (Projected) High placement on the list
> Common blood type
> Average chest size
The surgery itself is not something I care to describe here, but it usually lasts for several hours and is incredibly delicate and complicated. The average success rate for the surgery and the first year is about 90%, with a drop of about 5-10% each following year. Tricia also has a few things going well for her concerning survival:
> She's young. Most transplant patients are much older than Tricia, which skews that 90% survival rate.
> Other than her lungs, she's in good shape (despite the past few weeks)
> Her CF will not directly affect her new lungs. (this is too complicated for my tiny brain, but) The new lungs will have a different DNA than Tricia's body.
The recovery involves a few days in ICU, a few weeks in the hospital for observation and several weeks of more PT in the Durham area. This could be a minimum of about 8 weeks, but we've known patients who have complications and never make it home. They tell us that Tricia will be walking the day after her surgery (amazing).
So, if everything goes perfectly with both Gwyneth and Tricia, we are looking at being here in Durham until June/July.
Organ Donation is one of my new passions. If you have made the simple decision to be an organ donor, make sure that you tell your drivers license and your family of your desire. If you're not an organ donor, please, take a few minutes to learn how easy it is to become one.
The only reason that people die while on a transplant list is because there is not enough supply to meet the demand.