General
Transplant Center Ratings for post-transplant care (? from caregiver)
Hello all, I'm Mom to a double-lung transplant recipient. She is now 28, almost 2 years post-transplant. We are continually frustrated with her transplant center, as far as communications & even just plain attention to details. Examples - DD had to call 4 times in order to get a clinic visit scheduled. Then, at 19 months post-transplant, she was told her meds were supposed to change at 12 months! She has had 3 transplant coordinators so far. Anyway, we are wondering if there is any place that rates the centers for post-transplant care, with ratings provided by the patients themselves? DD is on reddit, where she has said she sees that some people don't even get calls back from their center! DD is currently finishing up her DVM and will be able to move wherever she wants. One consideration, besides wanting to be near her close friends, is the nearest transplant center. She wants a good one. As she says, the survival rates tell you nothing about the quality of the continuing care. If there is no such thing, how could one get something like that going?
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To me, that is completely unacceptable. I would insist on talking to whoever is in charge of the department. I would also talk to whoever is in charge of the hospital. I don't know if there is a way to see reviews except on Google. I agree survival rates don't tell you too much about the ability of the staff. It's really good that she keeps following up though. Although it's annoying. Whenever I am looking for a new doctor I "interview" them to make sure they and their staff are up for the job. in being my healthcare partner.
Let me know if you find anything that rates the centers.
This is a new resource that it still gathering data and developing but I find it to be very useful to compare transplant centers!
https://srtr.org/
Jhrenberg, I 💯💯 agree w/Jeanmarie that is why u have a coordinator after TP. I think u need to talk to her surgeon and let him know what is going on. Also do u have a social worker u can talk to about this. Your daughter should not be treated like this, especially with the meds we have to take to live.
I hope u get answers ASAP..
I had the best of care for 90 days post TP. They always called after my weekly blood tests even if all was good and no changes to be made. Now I feel like I am a burden to even ask questions. I realized that there are alot more survivors than newly transplanted, but a few minutes every few weeks would be nice.
I still am truly thankful to them and am blessed beyond belief. I just don't feel like I'm getting enough feedback. Maybe it is because my labs continue to be near perfect. However, labs don't express my feeling of insecurity and fatigue.
Jehrenberg, I hope that you get the help that you need. Sorry I rambled about myself.
Hi ole_ball_coach⚾️ I think that your TP teams sees you as a success story, after 4months I as a LTP patient am blown away how good you r doing. I had so many up’s/downs the first year, and some issues into my second year. I don’t think you should feel u r a burden your coordinator should always be available for u to ask any questions you want to ask. Tell them how u r feeling, we have all been there I think we all need reassurance we r going to be ok. Our bodies have been thru so much it takes time to bounce back. I know I have days that I feel nervous that my liver disease can come back. We just have to stay positive 💪 take it a day at a time. I will be 3years in October. Do u still have visit with a hematologist to monitor your meds/labs or your PCP.
keep up what your doing it’s working . Enjoy your trip😊
Transplant Patient
I'm assuming you're in the US? I'm in Canada, so I'm not sure if this would be the same. I absolutely adore my coordinator, and have had nothing but good things to say about my hospital, but I do also know my hospital has a dedicated patient support advocate where I can direct complaints/questions if I feel like my concerns are not being addressed. Also I wonder if there are any local groups for the transplant centres you're looking at that would have more information? I find a lot of patients are more open about their experiences with certain medical professionals if its in a closed group or somewhere where they feel they won't receive harsh backlash should they have a complaint. Maybe she can check there for centres she'd interested in?
It's so frustrating to have missing gaps in the transplant care but it is so important to identify where those areas are lacking and to bring as much attention to it as you can. Advocating for proper care is always going to be an issue when you have major health issues and it often requires assistance from family and caregivers to help those who need it. I find when there is a problem and the health center does not want to work with you to resolve it, I get loud and use every resource I can find to blast them and bring attention to the short comings. My job as a parent is to ensure my child (and family) get what they need and if someone is standing in the way of that, I will stop at nothing to bring attention to it and it is not the attention they want. I ask them to work with me, do your job and ensure these patients get what they need to survive and thrive. anything less is unacceptable.
Melsamm. I still have my labs at least bi-weekly. I like to do them weekly so I can keep up with changes. I get results the next day on my portal.
Thank you for your kind words and I know that I am blessed to be doing as well as I am. I guess that I just was spoiled with frequent feedback. But, (right on que) I just got my labs back from yesterday's blood work and it is all really good. Well, except glucose and it was much better. Thanks again for the pick me up!!
Hey coach 😊😊 yay yay for the good lab results, I love the portal it makes me feel better when I see my results r stable too. Getting your labs bi weekly is another good indication they r keeping a close eye on things , I still go monthly for my labs, will f/u with liver clinic in October.💚