General
Who is most important in your care??
January 15, 2022
in General
For me it is my nephrologist- he is my quarter back / I call him for everything related to my health! From a cold to rx renewals!
I wish I had a social worker or coordinator who could be leveraged as well!
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I have post transplant coordinator. I can email call or text her with any questions or issues and she directs my questions to appropriate physician and gets back with me. I had a pre transplant coordinator also and they are just wonderful people. They share labs and help with appointments as well. Love my team!!!
Transplant Patient
So great @Deb - my pre transplant coordinator was amazing too - now I don’t really hear from my coordinator - frankly don’t even know her/his name!!
I don’t know what I’d do without mine, really!! I’ve had 2 different ones since surgery and they have both been amazing. My pre- will always be special to me. Guess we all kinda feel that way.
Right now, my post-transplant coordinator. I can't even sneeze without her finding out. Always a great help and although we've never officially met in person, we've learned a great deal about each other's families etc. She's great.
You guys are lucky! I have to contact my care team via leaving a message on the clinic website. I see a different Nephrologist each visit. If I’m lucky I get a reply several days later if ever! I feel like I am on my own. My pharmacy gets the new RX when needed. They have been great! It takes over a week for my care team to review my labs and contact me with med changes after I notify them of abnormalities ! I’m 6 months post transplant.
It's been quite sometime since my heart transplant (12 1/2 years) . Since I have been blessed with exceptional health, the cardiology team here probably sees me as less of a priority. But medical knowledge aside, the most important member of my care team is my wife Joan. Together, we've been through three other heart transplants. We gather whatever information seems appropriate and then we pray. It seems to be working.
I agree spouses play a very important roll in recovery and moving forward as well as our children. I’m thankful for a wonderful family snd friends who support.
Transplant Patient
My first thought was myself! I manage a lot of my own care, especially living in a rural setting 5 hours from my transplant centre. I organize all my appointments, when the meds will fly in to me and where they will be delivered, I research all my own side effects and contraindications and what may cause what. I am like a transplant DIY. The only person I connect with on my medical team regularly is my coordinator. Less so now but in the beginning there was multiple phone calls a week. We call him my transplant boyfriend since some days I’m pretty sure I spend more time talking to him than my actual spouse.
Transplant Patient
Wow @BruceP ! What a story! It seems like you and Joan have a good plan and rhythm. Any advice for the rest of us?