2 Steps Forward, 3 Steps Back
Every time I think things are moving in a positive direction, I hit another roadblock or more hurdles to jump through. Nothing since my surgeries in September has been easy — NOTHING.
I had everything scheduled for my trip to Boston in April to be seen by doctors at Beth Israel. First, Jet Blue (a little over a week ago) sends me an email that they’ve changed my flight times. And of course they didn’t have anything that would work for my return flight home. So I had to cancel the flights with JetBlue and book with Delta instead.
Fast forward to yesterday. Phone rang. I recognized the number — Beth Israel. I figured they were simply calling to verify some information or ask more questions. No, it was someone calling to cancel one of my appointments with Dr. Carroll (the main doctor I needed to see), because the “machines are being replaced during the months of April and May”. At that point I felt like a balloon that someone stepped on, popped and then proceeded to stomp on. I mean…seriously…what else is going to happen???
I reached out to my point of contact via email shortly after, and today she informed me that, while she is double-checking, she’s fairly certain that the Nuclear Medicine (Lymphoscintigraphy) devices are being replaced. AND…the best part — there is no place in NC that I can have that done, and send the results to Boston. Even if there was, they prefer for patients not to have it done elsewhere.
So now I’m waiting…waiting…waiting for them to get back to me. Will I keep all the other appointments and go back for the Lymphoscintigraphy after May? Will all the appointments be rescheduled?
Also, in my last Physical Therapy appointment, my PT said that I may actually have a seroma. So I could have a seroma with slight lymphedema, lymphedema with a small seroma, or total lymphedema. But I won’t know until I have an MRI or ultrasound. Damn it! Can I just get some good news for a change? Can I just have someone tell me (and know) that it’s going to be alright…that I’m not going to look like an absolute freak all my life???!!!
To top if all off, I actually found out from someone in a Transgender group on Facebook that there is another plastic surgeon in Raleigh (at DUKE) who does top surgeries for transgender men — Dr. Kristen M. Rezak. Don’t get me wrong — I love my plastic surgeon, Dr. MacPhee. But it would have been nice to have options that were actually easy to find. In addition, Duke is in-network for my insurance. So, while Dr. MacPhee’s office did file my insurance, and the insurance paid for 80% of the procedure, etc., I had to wait to be reimbursed for some of that.
So…even though I’m still having appointments with Dr. MacPhee, should I also schedule an appointment with Dr. Rezak — just for another opinion? My endocrinologist thinks it might be a good idea.
And I think so, since one of the reviews a patient left for her states,
“I have no complaints. Dr. Rezak did a complex procedure due to complications from surgery by a prior physician. Her approach with me was cautiously optimistic which was good and I am now able to proceed with the next level of surgery which is good too procedures have not been unnecessarily rushed.”
All of this waiting…and roadblocks…and hurdles…and hard-to-find information and doctors and procedures — I’m absolutely over it!
On another note, I am so beyond thankful for my doctors at Duke: DR. CARLY ELIZABETH KELLEY (Endocrinologist) and LAUREN BAUER (Physical Therapist). They are amazing. I wish I had started out with them when I began my transition in March of last year. They are absolutely phenomenal. And they’re very focused on transgender healthcare. I know they will continue to do great things for the transgender community.
UPDATE: March 16 at 2:15 PM from Beth Israel:
Liam,
Plan on coming and do not worry about anything. :-)
Let’s stick with these appointments and if for some reason we can get a Nuclear Medicine scheduled, we will. Otherwise, all other imaging should be good!
