what has your experience been in the healthcare system with your transplant??

Berriosa1234

Hi Gang

I was talking with someone locally here in my community who is new to dialyis and he was put on dialysis emergently, and he told me he wished he had better care and more help along the start of his journey? In your experience what was your healthcare team/system like? Were they helpful? Any particular things you wish you knew ahead of time?

Jeanmarie

I have always felt like I am a part of a team during my health journey. But I had to work on it by learning as much as possible about everything. So I would have the right questions to ask. I think sometimes we think doctors are magicians but its really up to us to be our own advocates. Doctors have so many patients these days and paperwork. I think they appreciate us when we take on responsibility for our health.

I do think there needs to be education sooner regarding dialysis. More education on the importance of diet etc. I know most of us have access to dietitians, but I think they need to change it up to be more relatable to patients.

AliEm14

I’m in Canada so realizing we have a VERY different healthcare system over here. I live pretty rural, 5ish hours north of my transplant centre, so we traveled back and forth. I loved my team, still do. I think my coordinator is God’s gift to transplant patients. A lot of that pre-transplant stage was a blur, and I felt like I got a lot of information, but I did notice when things started happening I never felt surprised, or like this was something they hadn’t thought to plan for. Even between my first and second transplant, when looking back things did get pretty scary, my family told me they never felt like anything was out of control. Being 5 years out now, and back in my small town, I will say my care is different but I do know my team is only a call away, and are more than happy to collaborate with my local doctors.

darth_james

The first team I had With Dr. Reikes and Der. Erbeck were the best that I could have even asked for. Even the most dry tech had a genius sense of humor. The second time that I needed dialysis Dr. Reikes moved to NYC and I still miss the guy as a nephrologist. Dr. Reikes a I had the same sense of humor, which was dark and often it’s just not understood my neurotypical people. Yeah, the second time around was much more different than the first time due to the communication skills of my doctor and staff.

I remembered the sense of the gentility of my dialysis staff from many years earlier. It was more like: ‘here’s your chair’, ‘keep all complaints in-house’ ‘god forbid if Medicare finds out about something we did wrong.’ That certainly wasn’t promising.

The clinic that I attended the second time around counted days that I was in the hospital as days that I was ‘absent without leave’. They never bothered to check if I was in the hospital.

to become an eligible kidney recipient I had to take a psychiatric exams, which went fine last time. I did well with the WAIS and the HDMI but the clinic said they never received an aptitude/ psychiatric evaluation, so by default they declared me as being ‘mentally unfit’. That is surprising since I was never matched with a PsychD at a particular time to take the evaluation.

I had the test taken in Cincinnati and I did very well on the WAIS and the MBTI.

I could have used a better support team at that time among my family and friends. It was hard to relate to anyone when my own mortality felt so trivialized.

I digress, I attended Cincinnati where I had never met such a brilliant group of doctors and staff who were on the cutting edge of transplant science. I journaled throughout that period of my life. Although I won’t release names until I publish my work— the team that I had once I attended Cincinnati was overwhelming. I have two friend in Cincinnati- one became a ‘Rock Star’ in the band ‘Foxxy Shazam’ and the other friend works for legal aid.

I digress. Your transplant team is what you make of it but no one deserves to be treated like their remaining time is trivial. Perhaps it’s difficult to feel empathy for patients whether one is a tech, a nurse, a social worker or— even a nephrologist.