It has been quite a last month. Before I get into what’s been going on, let me start by saying I have a history of being a medical anomaly. I have been the 0.002% of the population to get one medical condition. I have been the 0.001%-0.064% of the population to get another medical issue, and the list goes on. So what I’m about to share falls right in line with this history.

Before I get into that, we all go through times of being unwell as its part of being human. The question is, when you’re under the weather, how well do you advocate for yourself?

Had I ignored my intuition, and followed my doctor’s advice in early April, my health issue could have gotten a LOT more serious than it already was.

Three and a half weeks ago I contacted my doctor with what I thought were symptoms of a tick infection from the tick that embedded in my right side late March. I let her know I had developed symptoms of:

My right hand was turning more red / purple when I moved it certain ways
Swollen lymph nodes in my right armpit which I thought were what was causing the blood flow issue to my hand
Pain in the right armpit or shoulder as I couldn’t tell exactly where the pain was coming from

I communicated I had read swollen lymph nodes and joint pain can be symptoms of the onset of a tick disease and asked if she wanted to further treat me for Lyme or wanted me to come in to be seen. Her response was she wanted me to get the Lyme test and then schedule an appointment with her.

I was extremely uncomfortable with this guidance given:

I knew the Lyme blood test the CDC recommends can give a false negative < 6 weeks from the tick bite, especially if the person was given a prophylactic dose of antibiotics which I was, and it had only been 2.5 weeks since I’d been bit
If it was Lyme, the sooner I get treated, the better

I decided:

To get the blood test to pacify my doctor as she still wanted the test done even after I provided the evidence it would be inaccurate
To make an appointment the same day at Urgent Care as they had told me to return if I developed symptoms to be further treated for Lyme

And this is how that day went:

I started out my afternoon at one medical building in one town getting the Lyme blood test
An hour later I was in another town for my Urgent Care appointment and they were debating between me having a blood clot or Lyme
Two hours later I was at a hospital in a third town waiting to get an ultrasound to rule out a blood clot
Two hours later I’m told to wait until the Ultrasound Tech can find a doctor to talk to me as there is a finding
The triage nurse on call at my doctor’s office calls and informs me “You have a blood clot and you need to go to the Emergency Room (ER) right away, you need to skip sitting in the waiting room, and you need to go right in as you’re at risk for a pulmonary embolism”, a life threatening condition where the blood clot travels to a lung and suddenly blocks blood flow
12:30am the following morning I’m finally discharged from the ER with a deep vein thrombosis (DVT), a blood clot in a deep vein in my right subclavian near my shoulder

To say I was feeling shaken would be an understatement. Thank goodness I had ignored my doctor’s advice of waiting to be seen, followed my intuition, and went to Urgent Care as it may have saved my life.

I woke up late the following morning to a voicemail from my doctor’s office asking if I could come in right away. I already knew the doctors were concerned as it’s unusual for someone my age to have a DVT. Turns out there’s two more levels of concern on top of this because:

When someone my age does have a DVT it’s usually in the legs instead of the chest
It’s unusual to have a DVT in the subclavian vein

Classic me, once again am a medical anomaly. Which means I have been going through a LOT of tests and doctor’s appointments to get to root cause of the DVT. So if you’ve emailed or reached out on LinkedIn and I have yet to respond, this is why and I thank you for your patience in me responding.

I am happy to report the blood thinner has done its job. As of this past Thursday, the life threatening symptom (i.e. DVT) has dissolved. Root cause on the other hand remains elusive as the tests so far have come back normal. As the follow up appointments and search continues, advocating for myself is key as the doctors:

Had been leaving gaps in the root cause search that I’ve been filling along the way
Tend to treat my body like the average person’s instead of the medical anomaly that it is
Typically focus on just their area of expertise rather than the whole body
Have a LOT to learn when it comes to tick infections
Don’t typically talk to each other

Reflecting on the above:

Had this happened to you, how much would you have just followed your primary care’s advice?
How well have you advocated for yourself previously with doctors?
How often do you come away from a medical situation feeling unheard and/or frustrated?

Call to Action

Want to improve how you advocate for yourself and your family with doctors? Reach out to Rosanne for help so you can be seen, be heard, and be effective in getting your medical concerns addressed
Using the comments feature, what’s a medical situation where you felt uncomfortable with how the medical community was handling it and you successfully advocated for yourself or family?
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About the Author: Rosanne Essiambre helps change agents and departments in one-on-one and group settings to be seen, be heard, and be effective in bringing about change in the organization and/or in their personal lives. She provides consulting and facilitation to organizations to improve communications and collaboration, smooth out the change / transformation journey, get to the root cause of an issue so it can be solved for good, improve processes, and implement successful lessons learned. And she conducts workshops, trains, and speaks on Energy Leadership, Emotional Intelligence, Resilience, Being a Change Agent and more. If you or your organization could use support with your change effort or some inspiration, contact Rosanne for a complimentary consultation. Rosanne is a Change Agent Coach, Facilitator, Six Sigma Black Belt, Change Management / Continuous Improvement Consultant, Speaker, and Energy Leadership Index Master Practitioner with more than 20 years experience working on a variety of transformations across a diverse set of industries both domestically and internationally, while continuously improving herself.