This is an interview that took place with a family member of mine who was with my grandma through her whole transplant process. To make it clear, this interview points out specific details about her case, and this information will not apply to every donation or transplant. This interview is here to give the perspective of what actually can happen behind all of the facts when it comes to transplants.

Interviewer: What was it like to try and find a hospital that would do the transplant?

Interviewee:

• It was very emotional because we were running out of time to attempt to save her life with no guarantee that it would work

• Trying to find a place was the first step and they might not accept you into the program due to having to do testing prior to acception

• We had to keep her as healthy as we could, she had to stay in the middle zone of not being too sick and not being sick enough to receive the transplant

• We had to worry a lot about the money and travel of the whole process due to it being multiple months long

Interviewer: How long did it take to find a hospital that accepted the patient?

Interviewer:

• Had a conversation with her pulmonologist in February 2024 

• Began the testing to see if she qualified at Columbia hospital from February to April 2024

• Rejected in April by Columbia University

• Each center sets their own standard for who they are willing to work with

• Up to the family to find a place

• Gave a bit of background information of the phone and some would turn her down because of her history of cancer or that they wouldn’t do a bypass heart surgery that she also needed

• The places that said they would take a look would read her medical records related to the transplant

• Sent out the original testing from Columbia to see if she qualified

• Cleveland and Northwestern said that they were interested

• Started with Cleveland because it was closer

Interviewer: What happened after you found a place that said they would test?

Interviewee:

• Went for a week in June, November, and December for testing

• Bloodwork

• CT scans and chest x-rays

• Pulmonary function test

• Gastric emptying tests

• pH testing on stomach acid

• Oncology testing- only for her because she had a history of cancer, could not have active cancer cells

• Mental health testing

• Family support interviews and education

• 6 minute walk test

• Pulmonary hypertension

• Transplant board meeting

• Meeting with the specific (lung) transplant doctors only

• Talks about her case

• Main doctor presents her case and states why she is a good candidate

• Then they vote

• First 2 times they said they wanted more testing for more information

• November and December

• Her team was very confident that she would have a successful transplant

• They voted yes before the new year

• They have to make sure that insurance will cover

  • Pre-insurance: 1 lung is 900,000,

  • Would have to self pay if you don’t have insurance

• Then they list you

• You wait until you get the call

• The call might be a dry run

• Dry run: you go intending to get the transplant but there is an interference with getting the transplant

  • Too sick to get it

  • Donor organ is not correct:

  • Not the right size

  • Too much damage

  • Sitting for too long

  • Disease that wasn’t known

• They will call the patient that needs to transplant

• Needs to be able to get there in time

• Make sure that the donor is brain dead and that the organs are viable

• They check with the family first then with permission they let UNOS know and give them the information of the donor

• UNOS will go through the process of finding the patient that is closest to the top of the list that also fits 

• Had to confirm an airport that was less than an hour away that could handle a private jet- had to fly on a medical jet, sent from Cleveland with medical people, can only have 1 person and the patient

  • Patient has to pay for it and was not covered by insurance

  • $16,000- depends on how far away you are

  • You only paid once even if you have more than one dry run

  • The patient had to get home themselves 

• Waited to hear about the lungs to see if they were viable or not

• Got a call within a week for her lungs- uncommon to get a call that fast

  • 60% within 90 days get transplanted

Interviewer: What was the pricing like?

Interviewee:

• Medicare: covered completely 

• 3M-everything

• 1.3M- transplant

• Had to pay for the medjets, food, lodging, transportation

Interviewer: What was it like post op?

Interviewee:

• Spend as much time necessary in the ICU

• 24 hr care

• Had her own nurse

• Got ICU psychosis 

• On a vent

• Lungs are the hardest to transplant

• Not awake- keep sedated

• 8-10 different medications going into her via tubes

• 6-8 drains

• Drains fluid from the body

• Liquid diet

• Had to move positions multiple times a day to make her comfortable

• She was allergic to heparin (blood thinner)

• Had a clot

• Got emergency surgery

• Blood thinner prevent blood clots

• Dangers of blood clots:

  • Popped in the brain: stroke

  • Popped in the heart: heart attack