A few recent exchanges over the past few weeks made me recall a pain point in my healthcare journey.  I felt it was worthwhile sharing about.   It’s not a choice I make willy nilly, in fact it’s one of the harder things for me to do, but sometimes necessary.

There have been at times healthcare professionals who have not been a good fit for me. I have not fired them, I’ve changed offices or found others to treat me instead.

I have a great team here locally, as good or better than I had in New York & that makes me happy, because getting there there can be a challenge.  It was for several years for me.

I very rarely actually have to fire doctors.

The first time it happened I was still an active volunteer with my nonprofits for my diseases. I  knew part of the issue was I was having problems with an organ that doesn’t encounter my diseases that often.

I do believe, however; that some of the treatments & care did advance progression of my illnesses at points, which is highly unfortunate.  That wasn’t evident until after the damage had been done but I nipped it in the bud as soon as I could.

One time, I even sent a letter outlining why I was leaving & how the errors in medical judgement had cost me in terms of my illnesses.

I felt I had to as a point of education to hopefully save someone else the same fate if someone else with one or more of my diseases came there for care.

There was one incident that was extremely painful for me.

I have two rare diseases LAM & TSC, but am fortunate our nonprofits have helped willing doctors set up specialty clinics for care.

So when I had to fire a doctor from one of those clinics, it felt as if I was betraying my own. I couldn’t talk about it. Only in private amongst friends for awhile.

I didn’t want to mar people’s trust in the few dedicated leaders who do take the lead to make a point to see patients with our rare diseases.

I had exactly two visits to this doctor & both went badly.

I felt less than human each time & doctors as a general rule I don’t find intimidating.   I worked to overcome it at first. I tossed it up to a difference in personalities when it happened the first time.

The second time, a line was crossed.

At the time, I was doing quite well on Rapamune.  I was having only a few points drop in my lung function here or there, & no issues with my kidneys.

For a woman who went through a period of almost 10 surgeries between 2004-2010 & almost died twice, I felt I had really gotten my life back & had a chance to live outside hospitals & doctor offices for once.

That particular winter was bad for viruses & infections.  I had a few more than normal but one of them was viral bronchitis after Hurricane Irene, which I knew was a fluke.

This doctor was of the opinion that I was getting more infections than average & that this drug was the culprit of it.

I calmly fought her on it & gave her history of infections in the past & how many I averaged even before Rapamune.

Yet, she insisted that I switch to another drug, Afinitor, which is an analogue (close cousin) but the same drug but newer.  I asked her why we were going to fix something that wasn’t broken?

I said I had done my homework & that Rapamune was the better drug for my lungs.  That the testing of Afinitor on LAM was inconclusive.   She dug in.  I stormed out.

I didn’t let her know but decided upon her recommendation to waste time & my own copays to prove a point to her because it was the only way she was going to listen & see that railroading a patient who is on top of their care is not the thing to do.

She sent a 7 page letter to 3 doctors (one my transplant lung doctor,  another an oncologist,  & a third I don’t remember).  This oncologist had an office in Valley Forge. While it saved another trip to Philadelphia that office was a pain to get to. I also had to take time off of work to go (which I did resent at the time because I had very little due to a few career shakeups.)

I also reached out to the head of the newly opened LAM clinic (at the time) to ask his opinion (as a second opinion of my own).  He, of course, backed this institutional colleague’s reasons for her decisions, but agreed that there would not be a benefit (in my personal case) in a switch.

He said he would only advise it at this point if I was having insurance issues where my Rapamune wouldn’t be covered.  I agreed that if that was an issue I wouldn’t have fought her on it.

My transplant doctor also agreed with me.  He said he read her 7-page letter in detail but sent his own response as to why he disagreed with her. Why he felt that this move wasn’t in my best interest.

The last was the oncologist. I didn’t explain the difficulties I was having with that doctor about butting heads. I just asked for his opinion because I knew I had set out on a wild goose chase.   He basically agreed with the others.

So there she had it.  I hope the opinions at least those 3 doctors assuaged her.  I hope she felt it was worth losing a patient over.

Later, I found out that there was a study going on for Afinitor that she was involved with. Had she been honest about that too, I think things would have gone better & at least I would have understood her rationale, even though I still wouldn’t have agreed in the end.

Her belligerence & combativeness actually made me cry on the drive home from the visit which was something I had not shared with many people.

But it also gave me the strength to fire her with purpose in a way where it would get the point across so she might think twice about repeating that scenario with someone else.

It’s a shame because it would have been way more convenient for me to stay under her care since her office is in the same location as my transplant center. Only because we travel in the same small circles did I not file a complaint with hospital administration or send a letter of my own.  I fired her by the kindest means available. I never went back after I stormed out. I told my nonprofit organization that oversees the clinic directors about it in private conversation, just to make them aware as to why I had left for constructive feedback purposes.

The doctor I moved to had been worth it though. I am not sorry.

I hesitated telling him about this incident at first, because he had actually founded that clinic there & she was his colleague.  I had also done several volunteer activities & reviewed his past research proposals on panels so he knew me.  I didn’t want him to feel I was putting him in the middle of something or airing dirty laundry on someone he certainly trusted since she co-directed that clinic with him for a time.

He listened but told me after, “Nikki. I agree you did the right thing. If it’s not broke, why monkey with it?   Once you become my patient & I know you know this since you know me,  I will always include you in treatment decisions.  You don’t have to worry about feeling that way. I would never push a treatment on you or make a switch like that without discussing it with you first & letting you tell me how you feel about it.”

I knew it didn’t have to be said, but I appreciated him telling me that. I’m glad it was.

I admit that since he’s in a different system & since I’ve had my hands full with the transplant,  I’ve put this clinic’s visits on the back burner for now.  I know he understands that though & it’s nice to have that resource in my back pocket for later.

I just worry for people who don’t have a back-up resource to fall back on because this can make the fight feel more lonely.

Yet, the moral of the story is trust your gut on getting a second opinion or making a change.

If you feel in your heart that you have to fire a doctor for your best interest, by all means do it.