Health & Beauty, Home & Happiness

July 19, 2019

The Transplant Process Q & A

I'm starting transplant evaluation next week. However, there seems to be a lot of confusion on what the actual transplant process is, so I decided to write this blog to help give you a better idea of where I'm at in the process and what happens next.

TRANSPLANT CHECKLIST:

  • referral from doctor ✔
    -My cf team sent over paperwork to the transplant team to introduce me
  • initial paperwork ✔
    -I got educational materials and a book of paperwork to send to the tx team so they can review my medical records and information
  • meet the transplant team/transplant evaluation ✅
    -I have been sent straight through to be scheduled for transplant evaluation, this means that they are going to do several days of intense medical testing to see if I am ready to be listed or "on the list".  Evaluation determines whether a patient is healthy enough to survive a transplant and also that they are sick enough to need a transplant at the current time. The healthier you are before the transplant, the better your chances of survival. Transplant can have serious complications, including death and is described as trading one disease for another. My next blogs will tell you all about the evaluation tests and what that process is like.
  • re-evaluate or get listed
    -The transplant team has a meeting after evaluation and will decide whether I am ready to be put on the list, too sick, or too healthy. At times they will ask for you to try to change certain factors before you are listed, such as gaining weight. If I am not put on the list because I'm too sick or too healthy, they re-test in six months, or if there is a significant change in health status they have a board of people who can review my records.
  • wait
    -Assuming I have been put on the list, I have to pack a bag and be near my phone and within so many hours of the transplant center to wait for a call for lungs. The wait list time varies based on a variety of factors including a "lung allocation score", priority for lungs is based on the list that utilizes this score.
  • get the call for lungs
    - If I get the call I have to immediately drop whatever we are doing and go to the transplant center.
  • accept or decline lungs
    -After arriving at the transplant center they do some preliminary tests to make sure everything is compatible with the donor lungs and that my labs look okay. There are certain risk factors like smoking, other diseases, that can compromise the donor's lungs. I have the option upon being presented with info about the lungs to accept or decline them. Sometimes there are "dry runs" where people are called to the hospital and then you find out the donor's lungs are unusable because they are too damaged or diseased. At that point, I would go back home and wait for a different call.
  • transplant
    -Assuming it is a "go", transplant is a lengthy surgery lasting about 6-12 hours. They make sure the OR is prepped and that they have all of my medical information reviewed. Patients are given their first anti-rejection meds before surgery to prepare the new lungs. The risks of death during and after transplant are usually due to infection and rejection (body doesn't accept the new lungs). There are other risks such as serious blood clot/bleeding loss, stroke, cancer, collapsed lungs, multi-organ failure, etc.. Patients are usually in the hospital for at least a week post-tx and are required to be up and moving as soon as possible after transplant. There are several lines placed, and chest tubes to help fluids drain from the lungs.
  • move/after-care
    -After being discharged it is required to live in the same city as my transplant center, which means we will have to move for at least three months. The after-care consists of frequent labs, xrays, bronchoscopies (where they take samples from the lungs to test for infection and rejection, etc), three months of pulmonary rehab, and more.. these appointments are often several days a week especially soon after transplant. The serious infection/rejection/complication risks require us to live near the hospital so we can get there on time since serious complications can happen quickly and can be fatal. The "perks" of transplant are the potential for a longer, better quality of life with more manageable respiratory symptoms and the ability to "breathe" like a person without CF. The cons are obviously the risks and potential for death.

    IMPORTANT: Transplants are not performed unless there is already a serious complication that will lead to death if not transplanted (respiratory failure, etc).. Necessary anti-rejection medications cause immunosuppression which therefore makes standard colds or viruses, extremely dangerous and potentially even deadly for transplant patients because the body has a much harder time fighting infections. Transplant is NOT a cure for Cystic Fibrosis, it is still present in the digestive system, and other systems of the body. 

Currently I am awaiting my first evaluation next week and then we'll see what happens next. I am expecting to either be placed on the list (with one of the longest waits for lungs), or to have to complete evaluation again in a few months. This is my assumption based on my lung functions, and my lack of need for supplemental oxygen. I am unsure as to how antibiotic resistance ties into factoring for being listed. However, anything could happen, the worst would be being denied lungs for some reason that I can't change.

Financial stability and the ability to care for new lungs and follow transplant rules such as relocation requires me to fundraise for my new lungs in order to be able to take care of them. The fundraiser pays for but is not limited to lost wages, relocation and lodging, food, medication, transplant surgery, rehab, hospital stays, and more.. My transplant center likes people to have at least three months of expenses saved up, for us that is $10,000-$15,000. However, with the extra care of moving and income loss, etc based on what insurance will not pay, our goal is $75,000. In order to even have a campaign or receive any of the funds through COTA, every request MUST be related to transplant-needy expenses and are documented by receipt and additional medical documentation - this insures that unlike a GoFundMe, etc, I can't go out and buy a car or a mansion or do anything other than what the funds are intended for. In the event I would pass away, funds can be used for funeral costs and go into a pool to be used for other transplant-needy families.

If you can help us, please donate to COTA (The Children's Organ Transplant Assocation) in honor of me (Sara Wiley):
https://cota.org/campaigns/COTAforSaraW
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