The Dream Team Has Crumbled

When Docs Leave

 

dream team docs 2

 

How dare he accept a wonderful, new job offer in a different state! If you have followed this blog for awhile (hint…go back to my beginning posts)..you will know that (like many of you), I have spent a great deal of time establishing my ‘dream team’ of docs over many years.

Lord knows that I have had to deal with my share of “frogs” for lack of a better term. They say (whoever they are)..that one must experiment with various doctors until they find the right fit. But seriously, who has the extra co-pays for that. Not me and maybe not you either.

My PCP

 

bizarre rude call

 

I had a very nice female PCP for many years. She got me (which translates to..she believed me). For those of us who are chronically ill and frequent our own personal posse of PCP’s and specialists, you understand how meaningful it is to truly be believed by a physician. Yes, we know how we may present to you. Admittedly, the copius collection of non-ending symptoms can look a little “hypochondriac-ish”. But trust us (I mean really trust us), we are not hypchondriacs, nor are we cyberchondriacs.

For 10 years or more I was treated by my PCP.  Dr. Gordon. She once shared with me that I was her most involved and complex patient. And while she was very nice, I think at some point, she threw up her hands with me. As I searched and searched to discover what the answers to all of my health problems really were, it always seemed that Dr. G, while accommodating to my requests, was fairly detached and uninterested in being the captain of my ship. Along the way, Dr. G inherited a very hostile group of office workers/assistants. I wrestled with leaving her care because of these very, nasty and unhappy folks. Coincidentally, it was about this time, Dr. G announced her retirement. That was approximately 2 years ago.

 

My Immunologist

 

Finally A Diagnosis!

 

I am extremely fortunate in having a wonderful Immunologist. Having been a very sickly, ill child since a young age, I never understood why I was sick all of the time. I had frequent respiratory infections; bronchitis, pneumonia & finally Bronchiectasis which resulted in the removal of the lower 2/3 of my right lung at age 14. I continued to be sick & require an antibiotic(s) about every 1-2 months for my respiratory events. At 52 years old (2012), I had a brainstorm & decided that maybe I should see an Immunologist to try to sort out my “issues”. Dr. Deangelo was an answer to prayer. As it turns out, Dr. D is a doc who has/does lots of research and was very interested in helping me to find answers and more importantly, an effective treatment. I continue to see him (and he is the only original member of SjoDry’s original  doc dream team.

 

My Neurologist

doctor mug

Do you ever just click with someone? I did with my Neurologist, Dr. Galen Mitchell. Dr. Mitchell is a doctor who always commanded a several month wait to get in..because everyone loves him. He was the most personable and thorough Neurologist I ever had the pleasure of seeing. Dr. M understood Sjogren’s Syndrome in a way that most Neurologists don’t. He ordered many tests and was the first to identify various neurological issues I have. I was understandably upset when Dr. Mitchell became ill and had to take a medical retirement a couple of years ago.

 

My Rheumatologist

 

Pic with Dr. Noaiseh

Dr. NICE – Leaving July 2019

Dr. Noaiseh (no-ice-uh), my trusted Rheumy. Dr. N was my 5th Rheumy (please see paragraph one..frogs). It took me a long time to find him. At first I was a bit frustrated with him. Because I have a severe immune deficiency, I cannot produce many of the antibodies that docs look for in diagnosing various autoimmune conditions. Dr. N was thorough with his tests, but most of my results were seronegative. It is frustrating for a patient who has raging symptoms to test negative, leaving the impression with the doctor that there is no diagnosis (or worse…it is in the patient’s head). I have had at least a small handful of doctors through the years suggest that I might wish to get a counselor. But as time went on, Dr. N began to acquire a handful of patients who share my same  immune deficiency conditions, one or more autoimmune conditions and the inability to test positive on various tests. He finally got it. He realized that a patient can have raging symptoms and not test positive for a specific condition. But more importantly, Dr. N will treat patient’s symptoms regardless of any seronegative results. Sadly for me, Dr. N was snapped up by the University of KS and will be leaving in July 2019. I am truly happy for him as he is beginning to be noticed within the Sjogren’s medical world. Though I will miss his kind and thoughtful standard of care.

 

autoimmune

 

My New PCP et al..

It took me almost 3 years to establish a new PCP. I mean just the thought of it for gosh sakes. I have so many years of medical records; too many diagnoses, etc. I didn’t want to go to just anyone. And the thought of trying to “break in” a new doc with all of my stuff just seemed overwhelming. I finally happened onto a nice PCP who happened to visit my mom when she was hospitalized. Dr. McMichael was in the same group of docs who treat the residents at my mom’s senior community and happened to be on call that weekend. I was selective in what I shared at my first appointment with him. His first effort was to order 2 MRI’s of my back — both of which indicated serious problems and resulted in a referral to a neurosurgeon.  I typically contact my immunologist when I am dealing with a respiratory event just because he knows me and my infections.  I am currently dealing with pneumonia. This report will be sent to my new PCP. I am guessing that Dr. McMichael now knows what kind of new patient he inherited.

 

doctor quote

 

And So It Goes

dream team stethoscope

Another day, another doctor…really! Yes, it has literally taken me years to establish my Dream Team of Docs and it is sad that I have to part with some great docs. But I have learned some important lessons through the years about self-advocacy and personal boundaries when it comes to the medical care I will and will not accept. Many years ago I believed that all doctors are supreme specialists in their area of practice. And even though I am a confident person, I had experiences of finding myself being spoken to in a condescending manner by various physicians. I would leave their office feeling upset, crying and questioning why I allowed anyone to treat me that way (in spite of their title and years of schooling).

Some physicians (one in particular I remember) were so rude and condescending that I swore I would never go to a doctor again. It takes a lot of strength and energy for a chronically ill patient to even drag themselves to a doctor. To be chided and spoken to negatively by an office staff or inconsiderate doctor (or both) is intolerable. Thankfully, the majority of physicians do not behave in such negative extremes. I am back to building my new dream team. If you are in the same boat, here are some tips:

  • Check local support groups (for your illness) to determine which doctors most of the members see. Sometimes you will hear a specific name over & over again..that’s a good sign.
  • Always check around with your network of family & friends.
  • READ all online reviews.
  • Research the potential doctor (notice several patient awards…that’s a good sign).
  • Check PubMed – Look at research your potential doctor may have completed He/She may specialize in your particular illness. Where were they schooled? Look at their university/board involvement.

 

Here’s hoping that you have put together your best medical dream team! May they all be there for you as long as you need them to be!

Happy Spring!

SjoDry

 

 

 

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
This entry was posted in Random, Sjodry's Doctor/Dx Quest, Uncategorized. Bookmark the permalink.

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