Advocating Frustrations, or Getting Really Pissed at a Really Good Doctor

I must constantly remind myself that I am not only my wife’s “caregiver”, but I must also be her constant and inexhaustible advocate.

Up to this point, I’ve been hesitant to broach this subject, largely because it was “open-ended”, but it’s something I feel needs addressed, even though it’s not exactly a closed situation as yet.

As most of you know, Jacquelynn’s doctor is in Savannah, Georgia while we’re in the Cincinnati, Ohio area. That 670 miles is, of course, far from ideal, but to be working with the #2 physician connected to this protocol, a doctor who has had a significant hand in developing it and rolling it out for public access, it is more than worth the extra work.

We’ve seen truly significant progress on the protocol under Dr. Ross’ guidance, too. We are both very excited to continue and accelerate that progress.

But there has been a large downside to that distance.   Communication has been almost nil, and it has often seemed as if the members of the practice don’t communicate at all. Given that they all work in a tiny office, essentially shoulder-to-shoulder all day, I find that a bit shocking.

An example: Immediately following our first visit to Dr. Ross’ office, one of the many lab tests Jacquelynn had to perform was a 48-hour urine collection to be sent to a lab in Colorado for a thorough Lyme test. Every possible variation of Lyme disease would be tested for, as that has been shown to be a very serious contributor to Alzheimer’s (most especially the “toxic”, or type 3 variation, which Jacquelynn has). The instructions for collecting and shipping the sample were explicit and detailed, and of course, we followed them strictly. About 2 weeks afterward, we were called and notified by Dr. Ross’ office that the lab had called to say that the samples were unusable. There was a “viscosity issue”, and they would need a fresh sample.

Well, shit. That was a real pain in the ass to do once, but ship us the kit again and we’ll have another go. We were told that we would only be charged for the kit and labs once (not cheap!), and a second kit was “overnighted” to us, arriving three days later.

Of course, we repeated the collection and shipped with utmost attention to every detail.

A week later, we received a call from a different member of Dr. Ross’ staff, telling us that the sample was unusable due to a “viscosity issue”, and they would send us another kit.

“Wait a moment”, I said, “again?” The nurse had no idea what I was talking about. When I told her that we’d already gone through this once and weren’t going to do so again without a really good explanation, she asked if she could call me right back. Within fifteen minutes or so, she called back to apologize and said that she had called the lab and they would make do with the sample they had.

If that was an option, why the call in the first place?

All this happened in late September and early October of last year (2017). Since then, we had a Zoom conference with Dr. Ross to discuss our progress and to adjust meds and supplements in response to the first battery of tests. During this conference, Dr. Ross mentioned that she was going to send out a kit for a 48-hour urine collection to test for Lyme disease. This should have been done right away, she said and offered her apology for the delay.

I did keep my composure, but as you may imagine, I was clearly upset, and Jacquelynn was furious.

After that conversation, Dr. Ross apologized yet again and said she would get those results ASAP.

Closing that conference (which took place on a Saturday after two cancellations during the previous week), Dr. Ross said that we would be contacted on Monday with the lab results and to schedule our next appointment, which should be in January or February, via Zoom again, before scheduling an office visit at approximately the six month point.

Since, the only communication we’ve had with the office was to request a new prescription, as the thyroid medication she’d written was unavailable from the manufacturer and would remain so for an unknown period of time.   We got a new ‘scrip written and haven’t heard a thing from them since.

I’m a pacifist in both philosophy and practice. I dislike confrontation and always prefer to give people the maximum benefit of the doubt. However, by early in January, I had choked my frustration for long enough.   I cannot advocate for my wife’s health from a silent seat, so it was damn well time to speak up. I wrote an email to Dr. Ross expressing my disappointment in the lack of communication and insisting upon a telephone call at her earliest possible convenience.

Timing is everything. Winter had struck the southeast coast of the U.S. with a blow it was (and likely always will be) completely unprepared for, and all offices were closed as the entire eastern half of Georgia was under a state of emergency. In Ohio, the weather they received wouldn’t even have resulted in a 2-hour school delay, but there are significant infrastructure priorities between the states. I received the same automated email that I’m sure every one of Dr. Ross’ patients did, which explained the weather situation and added that Dr. Ross herself was suffering a severe bout of flu. The practice would return to business as soon as 1) the state of emergency was lifted and 2) Dr. Ross was healthy enough to return to work.

This Tuesday, I wrote another email. In addition to expressing my desire (right) to see Jacquelynn’s lab results, I expressed my concern that she wasn’t being treated as a priority patient. If the doctor’s responsibilities as CMO for the Bredesen Institute were affecting her ability to prioritize her patients’ care, I would be grateful for a referral to another doctor participating in the program. Perhaps even one closer to home, if possible.

The next morning, I received a sincerely written apology offering no excuses and an assurance that Jacquelynn could and would, from this point forward, receive the best of care. In addition, follow-up appointments should be scheduled immediately after completion of the previous one, so as to assure no one ever falls through the cracks.   Dr. Ross said she had the lab results in question on hand and would call me that morning as soon as the office opened to discuss them and schedule our next appointment.

That was two days ago. This morning, wondering if perhaps she was waiting for me to confirm my availability for a call, I replied to let her know that I am available immediately and will always answer the phone to her calls.

I’m still awaiting her return call.

 

I’ll update this as soon as I hear from her.

UPDATE

This morning, I had a long conversation with Dr. Ross.  While I’m not going to go into all the explanations or deeply into the conversation at all here, I will say that I am at peace with staying with her practice and continuing forward with her as Jacquelynn’s doctor.

Jacquelynn did test positive for four “chronic” Lyme variations, and we will begin an herbal antibiotic and detox program soon.  As this kind of detox can wreak havoc on a weakened immune system, we’re going to tiptoe into it very gently.  The last thing anyone wants is for us to push too hard and make her sick and retard her progress or, worst case, set her back.  So, we’ll begin very slowly, and, as the doctor said, let Jacquelynn write this program herself, based on any reactions she may have to the detox program.

I will, of course, keep you all informed and updated.

The big lesson here is that, as caregivers (I will soon retire this term on this blog, and that discussion will happen here, as well), we must NEVER cease advocating for our loved ones and making damned certain that our providers keep them and their treatment firmly on the priority list.  NEVER RELENT, and never, NEVER ALLOW THEM TO FALL THROUGH THE CRACKS!!

There were several issues at the practice which enabled exactly that to happen, but I helped with my reticence.  Rest assured that this will NOT happen again.

Please, please, do not allow it to happen to you, either.

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