General
Supportive Care Options
I attended the webinar on cancerlyfe recently discussing supportive care options in cancer treatments. It reminded me of an article I read not too long ago suggesting the introduction of palliative care into the transplant process.
My personal opinion is this would be a step in the right direction when it comes to whole person care but I think a few things need to take place before people would even consider the idea. The first being we need to reframe how we think about palliative care (I don't know about you but for a really long time I thought palliative care and hospice were the same thing) and the second is we have to reframe how we think about transplantation. A lot of what is out there on transplant focuses on the medical interventions and surgical process, which is extremely important but I often see supportive treatment options overlooked.
What do you think about the introduction of supportive care practices or palliative care to transplantation? Or what patient support services are you connected to that focus on whole person care for transplant recipients?
1 - 11 of 11 Replies
This is really great. Transplantation is not a cure. Sometimes I think everyone forgets that. It takes lifelong care to keep our bodies going. Even when we do our best, things still can happen.
This is really great. Transplantation is not a cure. Sometimes I think everyone forgets that. It takes lifelong care to keep our bodies going. Even when we do our best, things still can happen.
I have to totally agree with AliEm I do not feel there is enough care for TP patients after care, I absolutely think we need more, as Jeanmarie said this is not a cure! I am so grateful that I been able to have transplantlyfe to help me. I have always felt that after your TP u r kinda on your own unless you have surgical /medicine issues, not a lot of after care support. I have definitely learned a lot about medicines, reading labs, results how to ask questions.
I feel really blessed, I have a post transplant coordinator who is just a phone call or text away and she calls me and reviews my labs, meds and to see how I’m doing. My transplant doctor is always checking on me as well. My PCP receives copies of my labs and stays up to date on any changes I’ve had to make. I’m almost 4 years post transplant and I feel lucky to still have such an active transplant team. I do think others aren’t as lucky and definitely think there is a need for after care in the transplant world. I wish I had the opportunity for physical therapy but Covid put a halt to everything!
Hi Deb, I should have mentioned my coordinator she is also a phone call away too, i know if I really needed something I could count on her, lead me to someone who could help, she and my Drs. we’re there when I had my rejection almost a year ago absolutely 💯 on top of it.
Transplant Patient
@Deb @Melsamm my coordinator is absolutely amazing as well. I couldn’t imagine navigating this without him, and we talk really frequently. I have no doubt if I needed anything from medical follow up to mental health resources he would make it happen. I do think, as in the addition of palliative care, it should be something more built in to the transplant program. Let’s have whole patient focused care before we even start, with designated people and teams for things like pain management, long term living with the condition, mental health…
My coordinator hasn’t gotten back to me or been in touch with me since transplant. I have never once met the dietitian or the social worker or therapist in person. There is truly very little supportive care in organ failure & transplant overall. We need a care team that is outside of our medical team.
fern22, that’s absolutely not good, does your Dr/NP aware of this. They r the ones that you should be able to get help/advice from. Especially in reference to your labs medication changes etc.,
Transplant Patient
I so agree with you @AliEm14 !! Transplant is a treatment and it continues until we lose the graft… and then we go back to end stage disease again - and all we can do it to try to prevent that from happening as long as possible.. there is not enough supportive care or as you say “palliative care”. We have spoken to so many centers now and they all ask for the same “an augmented PCP” who could coordinate the care that is needed and that of course includes mental care and social support!
@Melsamm I’ve never really had a reason to speak to my coordinator because my transplant nephrologist has taken care of everything for me. So i’m grateful for that at least. I have my own therapist. I don’t need to speak to the dietician but that’s all personal to my journey. I can’t imagine what it would be like for people who genuinely do need that support and they aren’t getting it.
All that counts is u r being taken care of, sounds like u don’t need the coordinator you have the TP Dr. better yet!😊 yes I feel the same you need after care for sure.