General
what do you think are two of the major challenges with transplantation?
July 21, 2023
in General
Honestly I think one big challenge is just general awareness about the process. Its not something people easily know about. You have to either be a patient yourself or know someone who has received an organ transplant
I think the second challenge is the shortage of organs globally. There was a stat I saw that says only 10 percent worldwide need of a organ transplant is met. Very disheartening. I would love to know what the transplant process is like in other countries. Look forward to reading some more responses
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Oof! I believe there can be many challenges regarding transplant; pre and post transplant.
The first things that come to mind are the process of getting transplant evaluations and making sure you remain on the list while simultaneously doing whatever treatments are required for end stage organ failure. This is really hard physically, mentally, emotionally, and spiritually.
Another challenge is asking for help, finding a living donor, ensuring you feel safe and secure with a strong support system.
And overall, the challenges of healing from surgery, any complications, the wait time, immunosuppressive therapies, and the organ shortage.
Gosh AMEN so perfectly said. I really think the worse like you said being told I was in end stage liver disease, but I had an excellent surgeon who was so wanting me to get a LTP my Dr. kept saying you r a excellent candidate for TP I have not brought your case to the committee but you are going to get on the list. He was the best💚💚
I think the second worse was being called and the livers were a no go. That was an emotional feeling I have never experienced w/my 83y/o Dad by my side not completely understanding what was happening. He was the greatest support,
Transplant Patient
I definitely agree that there needs to be more emotional and mental health supports for patients on their transplant journey. The fact that it can be documented the amount of trauma one endures on their transplant journey, or in a medical setting in general, and there still isn't a better plan in place for long term mental health care for those living with transplants baffles me.
I think another huge issue is how many variables there are in the system. There is a lot that is decided by what centre you're at, or what doctor you're under, and a general standard of care seems to be lacking (here in Canada too, but I know this is a bigger issue in the US). Or even from country to country, there is no set standard of care. So there are places where they've found things that work really well, but the collaboration isn't as strong as it could be, which is ultimately what we need to improve patient outcomes and experiences.
You are right. The shortage of organs is not good. Even though there may be lots of registered organ donors, many of the organs cannot be used for various reasons. So its even more important for more people to become organ donors.
The other major challenge I have is dealing with insurance. It has to be the absolute worse. Always worrying about if the insurance will cover medications or doctor visits. With the rising costs of everything, its so worrisome that one of the rejection medications will not be covered. Or when switching jobs and switching insurance. I recently needed to find a new Dermatologist because he now longer accepted my insurance. It took most of a single day finding a new one that was also accepting new patients.
There are so many challenges with transplant.
AliEm 💯 agree, after my TP when the surgeon releases u to the hepatology for f/u they never ask how r u doing mentally/physically. 10 minute visit see u. I guess they did their part!
My new PCP was the first to ask me.
Thank goodness for transplantlyfe to help all of us.
Jeanmarie, I will never ever UNDERSTAND WHY the insurance will not cover our medications after a TP. It frustrates the hell out of me I have spoken to so many folks about this with no answers.
You r absolutely right always worrying!!
I think its a huge issue on medication compliance after transplant. Its a major issue for rejection. And I think people are embarrassed to say anything to their transplant team. The medications are incredibly expensive and the insurance is incredibly complex. I think so many people struggle with this. The stress is not good for anyone's health either.
You r so right a lot will try and weaned themselves off some of their meds to, to try and make them last longer due to the cost.
I feel so frustrated b/c if you r not at a certain income their is no help I have been told this over and over.
Yes, it is a very frightening situation. Through the years I have learned about many of the pharmaceutical companies offering Co-pay cards to help. I'm not sure if everyone knows about this. Its something I have learned through the 17 years having a transplant.
Transplant Patient
@Jeanmarie @Melsamm as a Canadian, I don’t pay anything for any of my meds. The idea of having to deal with insurance to figure out how to refill life saving meds, or to see a doctor, blows my mind. That isn’t a system that’s designed for anyone to succeed. Healthcare here isn’t perfect but I am immensely aware of the privilege I have in not dealing with insurance
AliEm, Yes u are, it’s a freaking night mare. I have to pay $ 526. a month for my healthcare “ridiculous” and their is still out pocket co pays.
Jeanmarie yes to u to I am getting help from the pharmaceutical copay cards at this time, still have co pays but much better then what it could be.
Jeanmarie Wow 17years TP that is so good to hear, I am 2.8 months.💚