Question about patient empowerment and feeling comfortable "firing your doc"

Berriosa1234

After last night's wonderful support group I had a thought about patient empowerment? As a transplant patient, Do you feel empowered to talk with your care team about your care/care plan? Any upcoming procedures? Do you trust your providers? What does empowerment look like to you as you speak with your team about your care? I would love to know how it feels to be able to talk with your provider and if you were to disagree with their suggestion or arrangement Would you feel comfortable looking for a second opinion, Dare say would you fire your provider and look else where?

ToughGuy

Heck, yeah. I’m in charge now.

For the many months leading up to my transplant, and for the 6 months or so following, I let the doctors run the show. I don't know diddly squat about medicine, and just did as I was told.

My recovery (liver tx) was not normal. I suffered much more than expected, and spent quite a lot of time inpatient to no benefit.

Decided to go alpha-male, and boy did things improve for me. I did pursue a 2nd opinion about my care, and told them so. I was so crazy lucky, that Cigna assigned me a transplant advocate. Moriah, I love you! My advocate listened to me, and called my care team more than once, asking a lot of questions. Really got their attention.

My recovery has really turned a corner, and my mental state is approaching normal.

It is my body, my life, and dang, those folks are well north of $1,000,000 in billing. I should be treated like royalty, and that starts with acting like royalty.

No license to be a jerk, but if you don't understand, don't give up until you do. If you don't agree to a procedure, and 'no' is a thoughtful position, put your foot down.

I was letting the transplant team manage everything. Now, I have my physician leading my care. She knows she works for me. That has been a big deal for me too.

Thought about firing my provider, but no reason to believe that I didn't get excellent care. Communication has been a serious problem, but my program is very highly rated, and some team members are rock stars. I would take a bullet for my surgeon, for example.

And if I fire my Hepatologist, how do I find a better one? What defines a better one? How important is the Hepatologist at this point (for me), anyway? Transplant is done, recovery well underway - no sign of rejection, tolerating meds, stopped accumulating gallons of ascites per week, energy coming back, massive nosebleeds stopped, plumbing problems gone...

My thoughts,

Tough guy

BabyJ25

Hey Tough guy

well done !

I notice one begins to discover self in challenging times or adversaries- You emerge a better version of yourself and you realise seeking a second opinion or getting an advocate or being your own advocate is a strength brought about by an uncomfortable circumstance

GarciaChau

Hello,

My transplant team has supportive and open to having me be a part of my care. I did have a "serious" discussion with my Primary physician. Pre-transplant he helped and answered questions, post transplant, he kept treating me as if I was still in heart failure, thinking all my issues were related to my diagnosis. I had to remind him several times I HAVE A NEW HEART! What's next? How do we navigate side effects, other issues etc. I ended up at an appointment with a doctor that was filling in, he was so on top of my chart and previous visits. He took time to listen, offer his advice and weighed pros and cons. I transferred providers that day and still am enjoying great care. It's true you need to vibe your best advocate. Go in with a list of concerns and write down their responses. I read it back to them so they hear their own words. I also started waiting for a call to make an appointment, since it was so frustrating navigating the phone system, only to be told they are out of appointments for the month. I figured they "invested heavily in my health, if they need me, they will find me" :) It helped damper my anxiety in scheduling labs and appointments. I also use email and the online services to communicate with my Transplant team, this helps so much. No phone tag, it's all in writing.

AliEm14

I've found it fluctuates, and I'd argue it probably does for most people. In an everyday regular situation, I'm better at advocating for myself. If it's someone I have a pre-existing relationship with, I feel better about pushing back a little bit. And when I'm sick, when it's a more out of the ordinary situation, when I'm admitted or even if I'm just tired I will collapse under pressure.

Advocating for yourself and pushing back against your doctors and "firing" your care team all can sound really great in theory, and I know so many people that put in a situation where it's a little more rubber meets the road the trauma responses start firing. I know so many people, and have done this myself, where I end up agreeing to something I don't want because I don't want to be labeled as a difficult patient, or because I want my doctors to like me, or because I'm trying to avoid conflict.

Also for me it was some serious self reflection discovering what I actually did want, and what a good quality of care felt like for me, and how much I could trust my instincts in a more "urgent" situation. If I ended up being wrong, how would I handle it then? do I actually have the capacity to back myself up under pressure? If I "fired" my provider, what next?

This is what I mean when I say I think we all have great intentions, and probably do this to an extent, and at what point do you start to collapse?