Have you ever been "fired" by your doctor?

Posted by Sue, Volunteer Mentor @sueinmn, Dec 19, 2019

Here is what happened to me over the past 6 months:
After a year of treatment for MAC, I was not only still getting positive sputum cultures, but the repeat CT scan showed more evidence of the infection than the first. And I still FELT lousy – no energy, still losing weight, intermittent cough and chest tightness. My pulmonologist wanted to "stay the course" and "be patient" – easy for him to say – he wasn't living life on the sidelines. So he reluctantly offered to refer me to the infectious disease doc in our large clinical system. That guy changed one med, upped everything to daily, and was monitoring my bloodwork, eyes and hearing closely. But, when it came to questions about bronchiestasis and asthma, he said "I'm not the guy – you need to see your pulmonologist." Back to Dr A, who seemed impatient with my questions that day. At the end of the appointment he said, "Well now that you have Dr B, I don't need to see you any more." Wow! Ow!
For the next several months, I asked my questions here, or of my primary practitioner. I got good answers, but felt like I was adrift. Last week I saw my primary in the same practice, who has been with me for over 20 years, she asked what was going on and I explained. She was…astonished? And adamant that living with asthma, bronch & mac required oversight by a pulmonologist, so she and the ID doc found me a new one.
Like many things in life, this little adventure may turn out to be a blessing in disguise. I saw Dr C yesterday. She was much easier to talk to, listened, explained and was very accepting of my saline nebs as the ongoing treatment, with my Xopenex as backup for flares. Dr A had dismissed the saline as both unnecessary and probably ineffective, didn't want to hear or read about it. She also listened to my concerns about Breo (robs me of my voice!) and willing to step down to a milder med and "see how it goes."

Have you ever been "fired" by your doctor? What did you do?

I’ve been telling my doctors (when I see them) that I have been diagnosed with MAC. Their responses have been as varied as they are! From my pcp: “Once you have it you’ll always have it. Your pulmonologist will discuss treatment options with you. It’s not contagious (He said as he practically got nose to nose with me!).” From my pulmonologist: “Treatment consists of taking two antibiotics. It’s up to you.” From my cardiologist: “You need to start treatment immediately!” From my dermatologist: His body language told me how he feels! He looked as though he couldn’t leave the examining room fast enough! And so, for the first time in my life I’ve decided to not rush into engaging in any treatment option, see the pros and decide from there about which treatment option would be best for me. I have an appointment at NJH in mid January.

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@sueinmn I know how you feel, us MAC people do have alot of questions and my Dr also has been impatent and told me to get a second opinion, that would be useless as all Kiwi Drs go by the british guidelines, I feel some USA Drs in research hospitals are more open to thinking for themselves.

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@heathert

@sueinmn I know how you feel, us MAC people do have alot of questions and my Dr also has been impatent and told me to get a second opinion, that would be useless as all Kiwi Drs go by the british guidelines, I feel some USA Drs in research hospitals are more open to thinking for themselves.

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@heathert My two pulmonologists are part of the same group, not too different in age, but worlds apart in attitude and willingness to listen! I had a similar experience some years ago when I had complications from a hip transplant and revision – in that case, I fired doctor #1 for a lousy attitude that nearly cost me my life, and certainly caused me a great deal of trouble, and got extremely lucky with doctor #2, who is actually part of the same group and was recommended to me by the hospitalist ended up treating the post-surgery complications.
But I understand how fortunate we are – many of my friends live in sparsely populated areas and have few to no choices of providers unless they are willing and able to travel many miles. In my case, I simply had to travel a few more miles (less than 10) to see the new providers.

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@sueinmn I looked at coming to the US to get meds but once I got home My chemist couldnt fill US scripts, very difficult here. Attitude and willingness to listen is a massive part of it. Take care Heather

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@heathert

@sueinmn I know how you feel, us MAC people do have alot of questions and my Dr also has been impatent and told me to get a second opinion, that would be useless as all Kiwi Drs go by the british guidelines, I feel some USA Drs in research hospitals are more open to thinking for themselves.

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@heathert, I agree with you there.

Liked by heathert

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I agree with you about attitude and willingness to listen. The first respirologist I saw was very confident in his approach to treating Mac and prescribed the big 3 to me. I was not familiar with the disease and started doing my own research and joined this forum.

I realized after a little while that he knew very little about Mac. I asked for a referral to a specialist for another opinion but he said I didn’t need another opinion because my illness was so straightforward. He was inaccessible when I had concerns and he would not work with my GP when I went to her with concerns. I found that I had to double check everything he prescribed or told me about the disease because of oversights. He discounted my concerns re side effects. I could go on and on.

At any rate, my GP referred me to a specialist and, when I told the respirologist, he was visibly angry with me and my GP.

I have sinced changed doctors and my new respirologist works with the Mac specialist to develop and monitor a very different care plan that is working much better than the previous one.

I guess my point is get second opinions and different doctors if you need to, do your own research and advocate for yourself if/when you have concerns. I don’t mean to carry on here but I really learned this the hard way.

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@kathyhg

I agree with you about attitude and willingness to listen. The first respirologist I saw was very confident in his approach to treating Mac and prescribed the big 3 to me. I was not familiar with the disease and started doing my own research and joined this forum.

I realized after a little while that he knew very little about Mac. I asked for a referral to a specialist for another opinion but he said I didn’t need another opinion because my illness was so straightforward. He was inaccessible when I had concerns and he would not work with my GP when I went to her with concerns. I found that I had to double check everything he prescribed or told me about the disease because of oversights. He discounted my concerns re side effects. I could go on and on.

At any rate, my GP referred me to a specialist and, when I told the respirologist, he was visibly angry with me and my GP.

I have sinced changed doctors and my new respirologist works with the Mac specialist to develop and monitor a very different care plan that is working much better than the previous one.

I guess my point is get second opinions and different doctors if you need to, do your own research and advocate for yourself if/when you have concerns. I don’t mean to carry on here but I really learned this the hard way.

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@kathyhg You are so right! Back in the 1950’s doctors were like God. Nobody would think to question anything they said or did concerning patient care. When I started having symptoms my doctor said I must be depressed because I retired! I retired because I wasn’t feeling well!!! My son in law who happens to be a gynecologist found my MAC because he sent me for a chest CT. When I started having serious uterine issues several months back, that PCP told me my MAC must have spread to my uterus and insisted it be biopsied for MAC when I had my surgery. Good grief. Of course it was negative! Disseminated MAC is rare! She is retiring, and I have a new PCP, but honestly my old PCP is not knowledgeable about MAC – but thinks she is! I am so glad I have a new PCP here and a pulmonologist and an ID doctor at UMass. The best advice I have received is “ listen to your body and its infinite wisdom.” Then you will be the best self advocate. Merry Christmas and Happy Hanukkah! Wishing everyone good health and all good things in 2020! (irene5)

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