July 21, 2020 at 3:23 pm #26323
My son received a heart and double lung transplant almost 6 years ago. There is a list of requirements one must meet in order to be listed for transplant. One of them is that you MUST have a primary caregiver and secondary caregiver.
This can get complicated, even with family members, when you receive a transplant out of state. You are required to live within close proximity to your hospital/clinic for at least 3 months. I quit my job and moved out to CA with my son for what turned out to be 4 months, while my husband and other son remained at home in WA.
Finding a caregiver who can commit to such huge responsibilities and sacrifice is not easy for many, especially when there isn’t immediate family who can help. A new member to the forums was denied transplant because a paid caregiver is not permitted.
Have you been declined transplant because you are unable to find a caregiver? Did you struggle with this requirement but eventually work it out, and if so, how? Share your experience.
I have attached a link about the requirements of a caregiver. It is for liver transplant but it reads the same as what we were told for my son’s heart and lungs.
July 21, 2020 at 6:16 pm #26332
I’m the new member who couldn’t get a lung transplant because of a lack of caregiver. I had a friend who was going to do it. She went to many of the appointments over more than a year I had to o to for the processing, and I was even listed for a while. She lost her lease on the home in my rural California town where she lived and she was offered a position managing a resort in Bali. I certainly couldn’t begrudge her that opportunity. I was delisted when she was no longer available.
My sister offered but she lives out of state, has three children and a full-time job and I was feeling rather ambiguous about getting the transplant anyways. I was listed in summer of 2015, so I have made it past 5 years which is the average post transplant survival anyways. (at least that was average at hat time, it may have increased over the past 5 years as transplant techniques have been refined)
Today I had an appointment to see about getting valves in my lungs to decrease hyperinflation, a relatively new treatment that was approved about a year ago. Unfortunately they said my Pulmonary Hypertension was now at 48 and it had to be brought down before they could consider the procedure. He also said the effects of my PH were made worse by a PFO which is a hole in my heart causing me to need even more oxygen.
Even if they can get my PH pressure down, he said my lungs with an FEV! of 19% and severe hyperinflation (RV of 250%) would make me the “sickest patient” they will have tried to use valves on. He said he was only considering it because I walk over a mile continuously over 45 minutes on my treadmill every day. He said he figured I’d be in a wheelchair after looking at my heart and lung test results.
July 22, 2020 at 12:03 pm #26349Jen CuevaKeymaster
Again, @mendo-bruce, I am sorry to hear about you unable to be listed for a transplant because you have no caregiver. I do understand their requirement, and it makes sense. Unfortunately, it is sad with your low lung function.
I am sorry to hear that your appointment did not go well in regards to the valve surgery. I am happy that they will not risk that. I am wondering why they never chooser to close the PFO that you have before your lung function became so decreased. Did you say before that this happened rapidly?
Despite your lung function and other health complications, I am inspired by your treadmill usage! I use a wheelchair for distances and nothing near your low lung function! What a trooper you are! Thanks for sharing that! Take care!
July 22, 2020 at 3:59 pm #26354
@jenc, I’m not sure how “rapidly” my lung function decreased, I had my first pulmonary function test in 2010 where my FEV1 lung function was at 28% which was already “end stage”. I have declined pretty steadily since then. I was referred to Hospice in 2013 and told by the transplant committee in both 2015 and 2016 that I had less than a 50% chance of surviving a year.
I am sure that my regular treadmill workouts are what have allowed me to exceed my doctors predictions. It is pure hell on the 4 days a week that I push myself on it. I have been prescribed morphine for the air hunger I feel when walking on the treadmill. I use it Mon, Wed, Fri, and Sat. I have been using it for nearly two years now and have still been able to avoid developing a dependence on it. I go a week without using every other month just to verify that to myself. But the doctors seem to feel that anything I can do to keep exercising is worth it.
As far as closing the PFO, this is the first I ever heard about it (from the valve doctor) He suggested I have it closed and said it would help with my oxygenation. I will be talking to the pulmonary cardiologist the second week of August.
- This reply was modified 1 year, 4 months ago by Mendo Bruce.
July 22, 2020 at 5:50 pm #26359
@mendo-bruce your situation tugs at my heart. It must have been emotionally draining the efforts you made to find and keep a caregiver. I’m inspired by your positive attitude and drive to stay active despite the disappointment physical strain.
It has been my experience over the years that how much and how far doctor’s can go to help you depends on your tolerance level and ability to move around. It helps them determine if a patient is strong enough to undergo a certain treatment or procedure.
Is the valve surgery a definite no or is there still a small window of opportunity? Your doctor sounds very knowledgeable, compassionate and impressed by you, as he should be. Thank you for sharing your struggle and determination with us.
July 22, 2020 at 9:22 pm #26366
@colleensteele The valve doctor said he would run my lung CT through he software to see if it would work for me. He will let me know next week. Then if the pulmonary cardiologist can get my pressure down enough, with the medications he said he wanted to start, he will consider trying it.
July 22, 2020 at 10:41 pm #26367
- You must be logged in to reply to this topic.