[NHLakesChapter] Randy Pierce's Facebook post text

[andrewjharmon at gmail.com]

Here's the text from Randy's facebook post:

 

Good Saturday morning, everyone. This is a longer life update.

After a week here at Mass General Hospital, they will be discharging me
later today to head home with Tracy and an aggressive outpatient follow-up
plan.

Unfortunately, we have not yet resolved my situation, but we have  learned a
considerable amount and have established a clear outpatient strategy to
continue

that work and carefully coordinate how and when to advance treatments in
ways that can truly be meaningful and effective.

Candidly, this is a mixed bag of news.

Let me start with three significant positives.

First, my sleep continues to be pretty solid, with every expectation that
this will continue and bring long-term, increasing benefits across every
aspect

of my life.

Second, we have seemingly minimized or mitigated the migraine challenges to
the point that I may return to the infrequent level I experienced before
this

condition began. We will see how that holds up as I transition back home,
but there is a reasonably high degree of confidence on this front.

Finally, and perhaps most positively, there is a deep comfort in being able
to return home. I am really looking forward to being there with Tracy,
Swirl,

and Nama.

All of those genuinely good and hopeful points aside, there are still some
significant concerns.

I can expect frequent episodes of syncope, meaning I may become lightheaded
and potentially black out multiple times a day, even with minimal exertion.

The good news is that this tends to present as a sliding scale, giving me
warning to get to a safe place and reduce activity before things escalate.
Even

so, this makes traveling anywhere difficult, including navigating within my
own home.

In addition, my vestibular system is not functioning well. This means I can
become vertiginous and sufficiently off balance to fall erratically and
dangerously,

often with little to no warning. This is a very significant risk, especially
as a 6'4", blind guy. While this is not occurring at the extreme level of

the days when I was asked to remain in a wheelchair full time, it is
happening often enough that I must be exceedingly cautious. This will have a
meaningful

impact until we are able to address it more fully.

As test results continue to come in and studies are completed, the plan will
become clearer. In the meantime, the team has asked for a short window of

patience while we pursue an aggressive outpatient approach. This will
involve frequent trips into Boston. Tracy and I will be evaluating how I
travel and

navigate, and for now that will likely mean using a travel wheelchair
outside the home, simply because we cannot yet ensure my safety with walking
alone.

This does not mean I should expect to be relegated to a wheelchair long
term. It does  mean that, for the short term and outside my home, this is
the safest

choice. I am conflicted about it, but I am also resolved. Safety matters,
and I want to make the right decisions, even when they are uncomfortable.

Appointments are already lining up, including as early as the coming week,
which is pretty remarkable.

Am I nervous and concerned? Absolutely.

Do I still have the same level of hope and optimism as when we first began
this journey here at Mass General? Yes, I honestly do.

This is a complex situation, and it is not surprising that it takes time.
The team is being deliberate and precise, focused on finding the root cause
rather

than simply applying a temporary fix that might mask the real issue and
allow it to worsen.

I suspect many of you may have questions. To be candid, I have plenty
myself, and I am still doing a lot of processing. I ask for a bit of grace
and patience

right now. You are welcome to ask, but I likely will not be putting effort
into answering questions just yet, as I continue to sort through my own
understanding

and mindset. Perhaps starting next week we can dig into that more.

What I do know, without question, is how incredibly kind, supportive, and
encouraging so many of you have been. Please trust me when I say I
appreciate

it more than most of you will ever know.

I expect to head home mid to late afternoon today, and I will likely be
radio silent until Monday.

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