Am I an Enigma?
According to Miriam Webster, the definition of an enigma is:
1: something hard to understand or explain
2: an inscrutable or mysterious person
3: an obscure speech or writing
I’m definitely starting to think either I’m an enigma…or my body is. So that first definition describes me perfectly. Funny thing is that I’ve always been in perfect health until I had the top surgery.
So, I got yet another second opinion — thanks to Cisco — this time re the edema and scar tissue I’ve been dealing with since September…that doesn’t seem to be improving at all. While the scar tissue has shown improvement, the edema has not…even after several PT appointments.
While I was hoping that the second opinion would certainly include some “new and different” things that I need to do to help speed up the healing and reduce the edema, I definitely didn’t expect what was shared…and to be honest, it made me wonder if I did the right thing — having the top surgery…starting testosterone…transitioning to a man. It also scared the crap out of me.
Here’s just some of what the doctor shared:
He should consult with an endocrinologist regarding the impact of testosterone and fluid retention. Likewise, his cardiac function should be assessed by his PCP or cardiologist to ensure there are no cardiovascular contributing factors.
Imaging may include EKG, stress test, measurement of cardiac enzymes, echocardiogram, but these should be determined by a cardiology specialist. He may benefit from seeing a lymphedema specialist, particularly if the symptoms do not improve or worsen. They are likely to consider imaging with lymphoscintigraphy to assess lymphatic flow. Depending on their findings and assessment, procedures such as lymphaticovenular anastomoses or lymph node transfers may be options.
With regards to long-term prognosis, he shared the following:
Given the degree and complexity of his case, I am not surprised that he is still in the recovery phase at 4 months. He is improving, but it is not possible to definitively determine the prognosis. The patient will likely continue to improve with the comprehensive treatment plan mentioned. The additional nutritional, endocrinology, PCP/cardiac exam may shed light on additional interventions for optimizations. I would anticipate several more months to a year of adherence to the plan. His symptoms may fluctuate over time, but compliance will be essential. The scar tissue will likely soften over the next 18 months. The edema may fluctuate for the long term, but this cannot yet be definitively determined. However, edema secondary to significant disruption of lymphatic flow can be slow to resolve or show little change. The improvement with the instituted measures is promising.
Also, though we don’t know for sure just yet, I may end up having to go out of state (California or Boston) to a Center of Excellence to see a lymphatic specialist. Waiting to hear back from Advanced Medical on this.
So, here’s where we are. I’m now waiting on Duke Health to contact me back re: the endo appointment. Looks like I’ve got quite a long road ahead for sure. I was so hoping that 2021 would be much better than 2020, but so far it’s not off to a good start.
This was just the right time for me to receive this quote from a colleague:
More updates to come. Keep sending positive thoughts my way.
- **Update: I now have an appointment with the following endocrinologist at Duke Health on Feb. 23rd. It’s a virtual appointment, and I’m on the waitlist for a sooner date if one happens to open up.
Wish me luck!
Liam
