Who is in charge of you?

by Carolyn Thomas ♥ @HeartSisters ♥ July 21, 2019

And you thought YOU had a lot of medical appointments. . .

Writing on her blog, “Sick With Optimism“, a Canadian patient regularly sees three nephrologists from three different clinics, two hematologists, two rheumatologists, a cardiologist, her GP – “as well as so many interns, inpatient doctors and fellows, I can’t even count!”

I was profoundly moved by her story about how one of her many recent doctors’ appointments evolved. . .

She lives with a chronic medical condition called scleroderma* (an incurable autoimmune disease she’d never even heard of before her own diagnosis) along with kidney failure, a condition called Sjogren’s Syndrome*, and other related medical complications that are very serious.

“At the clinic appointment, my doctor asked me, ‘Who is in charge of you now?’ (meaning, which doctor was coordinating and spearheading my treatment?)

“I was a little taken aback. I figured she should actually know that.

“But the trouble was, I didn’t know myself. My case seemed to be passed around to various specialists depending upon what my greatest need was at any given time.

“My ‘perfect storm’ was a result of a complicated illness, involving a number of specialty areas across two different hospitals.

“Don’t get me wrong, my doctors do communicate amazingly well, considering, but I now understand that I am the one in charge of me.

“It is up to me to make sure that my care is coordinated and makes sense. Just because my symptoms may indicate a certain change in medication or treatment is required, I need to be doing an overall reasonability check.

“For example, recently my blood pressure increased dramatically and I needed to start on a new medication and subsequently increase the dose to be effective. At the same time a doctor from a different clinic wanted me to increase the dose of my immunosuppressant drug again.

“But this time I held off.

“I told the doctor I wanted to adjust to one medication before increasing another.

“It can be difficult to bring yourself to respectfully dispute a doctor’s recommendation, but I found that he was extremely understanding and supportive of my position when I explained my reasoning.

“I was once so eager to see improvements that I agreed to multiple treatment changes at the same time, making it almost impossible when things went wrong to determine what was causing my problem, or if it was the confluence of changes that resulted in a recipe for disaster. Mine is indeed a cautionary tale. I confused my hopes with what was realistically possible.

“I understood that the doctors who had gotten me on the right track before would eventually get me back on that track again.

“The trust in my doctors never waned, but I realized they had been missing an integral player – I had been a spectator instead of a member of the team so far, and that needed to change.”

“For years I was that stereotype — a minivan-driving soccer mom. I know that even an excellent team will struggle when they are short a player, even if that player is not a star.

“Proud as I was, I didn’t admit to myself or anyone else that it was more than I could handle alone. I went to almost all appointments on my own. At first I would just listen and try to remember, then I started taking a few notes, and finally, I pretty much just got lost in the fog of it all.

“Sure, I could beat myself up for not realizing this sooner, but I won’t, for two reasons:

1. Regret is a negative emotion and I try to stay as positive as I can.

2. I was really sick… like an injured player, I was sidelined by my disease, leaving my team playing 10 vs. 11.

.

Helpful tips from “Sick With Optimism”:

♥ If you are lost in the fog of your own perfect storm, do say something.

♥ If you can’t sort out the details or understand why you are taking certain medications, speak up.

♥ Try to find an advocate or perhaps a few people who are close to you who can be called off the bench to substitute for you if it all becomes too much to handle on your own.

♥ Keep a specific notebook that you or whomever you ask to help you can keep chronological notes in. Keep the notebook with you, that way when you think of a question you can write it down rather than relying solely on your memory. See more of her useful tips on Start a Symptom Journal. Solve a Mystery.

♥

Q: Have you ever felt like you’ve been a spectator instead of a key member of your own healthcare team?

NOTE FROM CAROLYN: I wrote much more about how we adapt to becoming a patient in my book, A Woman’s Guide to Living with Heart Disease . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).

*Scleroderma is defined as a group of rare diseases that involve the hardening and tightening of the skin and connective tissues, affecting women more often than men; it most commonly occurs between the ages of 30 and 50. Sjogren’s Syndrome is defined as a disorder of the immune system identified by its two most common symptoms: dry eyes and a dry mouth, often accompanying other immune system disorders like rheumatoid disease or lupus; it affects more women than men, typically after age 40. (Source: Mayo Clinic)

Hat image: JLG at Pixabay

2 thoughts on “Who is in charge of you?”

With the patient portals now allowing us to have all of our healthcare team members communicating digitally, getting all of our providers on the team has become much easier for me. The information flows more freely and records are more accessible.

Sometimes I am too ill to log on and still have the tendency to make a phone call to get my questions answered!

The issue I am struggling with now is that I still do not feel like I have a tribe of people that are living with Cardiomyopathy and dealing with similar issues after living and fighting for over 10 years.
I have a great FB ICD group, but do not trust social media to be a safe and sharing environment for such unique and specialized issues.

I was recently told I can remove my ICD and wire(hopefully) as I have improved enough to live without one! Also, the box has caused SO MUCH nerve damage and shoulder/neck problems, I am working towards removing everything and living without the defibrillator. I cannot find much about taking the equipment out and any helpful information from others that have lived through the removal surgery and discuss how that decision changed their lives.

My current long term cardiologist has referred me to an EP that specializes with ICD removals and I hope I can remove this equipment with minimal issues. My cardiologist is moving to Oregon and she was the doctor that helped me keep everything together, so now I start over with a new cardiologist I hope will advocate for me as well as my outgoing doctor has!

The post did mention the person was advised to make multiple changes to her medications however my doctor advised to only make 1 change at a time so you can adjust or stop those changes if they are advantageous to the health goals.

To answer the question as to who leads in your care, in the U.S. they encourage the Primary Care doctor to be the doctor at the center and making all the specialists care circle around the PCP doctor putting all the information in one place, But my gut tells me this seldom happens unless the patient or their advocate is on top of everything!

I do not get a sense that the primary care clinics take enough time and effort to have all the specialty information reviewed and not enough in room visit time is allowed to even be able to talk about everything that may need to be discussed!?

Finally, I use a note app on my phone to make a list of questions for each doctor I see in order to keep the health topics straight because as we all know, the specialists will only work with patients on their specific specialty and refer you on for ANYTHING else! It’s a struggle and can be a full time job for many of us.

Best regards,
Mary C

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Carolyn Thomas says:

July 22, 2019 at 6:28 am

Thank you for this, Mary. I suspect that in this woman’s case, there are so many specialists involved that many GPs would be overwhelmed by ‘quarterbacking’ all treatment recommendations. If they were quarterbacking, the GP would have caught the dueling prescription drug issue. This was an unusual case because of the need to manage multiple chronic illnesses. The specialists didn’t seem to be communicating with each other. That’s where the patient really has to be on top of treatment decisions.

Here in Canada, the GP is also considered the ‘doctor at the centre’- except when a patient is hospitalized. There, a specific physician is designated as the MRP (“most responsible physician”), responsible for ongoing care.

Good luck with your decision to remove your ICD (the good news is that you’ve improved enough to have this conversation!) After what you’ve been through, no wonder you’re eager to get it out. I’m not a physician, but my general understanding is that removing the device itself is not a problem, but removing the leads can be. I hope that the EP who is experienced in this procedure can help answer all your questions – and most importantly that your new cardiologist will be as effective an advocate – and maybe even better! – than your longtime doc was.

You’ve raised so many important points, Mary – thanks again.

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