Back from Boston (No, they Didn’t Keep Me)
I spent last week in Boston, so I could be seen by the doctors and nurses at Beth Israel Deaconness Medical Center — the official hospital of my favorite baseball team, the Boston Red Sox. Are you humming “Sweet Caroline” yet?
My hope was that they could tell me whether I did or didn’t have edema/lymphedema, and somehow “fix” me. Now I know that many of you have said to me, “You don’t need to be fixed”. While I appreciate that, I don’t know that I agree — because I have felt “broken” for quite a while now.
I did get to have some fun while I was there though. Just a few of the things I did:
- Attended a Red Sox game at Fenway — where I had a Fenway Frank, sang “Sweet Caroline” by Neil Diamond and “I’m Shipping Up to Boston” by Dropkick Murphys.
- Had some good food (lobster roll and clam chowder), beer and conversation at Ye Olde Union Oyster House — the oldest restaurant in Boston and the oldest restaurant in continuous service in the U.S. — the doors have always been open to diners since 1826.
- My daughter came and spent some time with me. Took her to Cheers, since she had never been. I mean, it’s an iconic Boston landmark. I had been before but she hadn’t. So of course we had to go.
- Went to Faneuil Hall Marketplace and Quincy Market on the day I arrived. It was super cold and raining. But glad I went, because there was a special event going on — the Boston Red Sox City Connect Jersey event. Wally was there, of course. I got to take pictures with the World Series trophies.
- Did a lot of walking and sightseeing. Wanted to go on the Whale Watching Tour but couldn’t find any availability on this trip. Maybe next time.
But…the fun stopped (for the most part) on Tuesday morning when I had to be at the hospital for my first appointment (lymphoscintigraphy imaging)- which included injections containing lidocaine and dye, inserted between the “webbing”of my fingers and toes — 10 total. I was the first person to ever get all 10 in a day. That was absolute torture! Think of the movie, “Saw”. OMG! So painful!
Below is the list of appointments that were scheduled for the week.
Wednesday consisted of meeting with the cardiologist, Dr. Brett J. Carroll, and physical therapist. No pain involved. Just lots of tests and conversation. No issues with heart and lungs. Whew!
Thursday was MRI day — first one I’ve ever had. So it was a little scary, and it didn’t help that yet another injection was involved — though this one was a piece of cake. So, after almost an hour of staying really still and hearing, “Breathe in, breathe out. Hold your breath. Relax”, I decided to go grab a beer at a local bar. I think I chose a good one. 🏳🌈
Friday was the big day. It was the day all the doctors and nurses were supposed to get together to discuss my case. I had an appointment at 11:00 for an IcG Lymphangiogram, but early that morning I got a call from the PA that it was no longer needed, and that they would see me at 12:30 for the discussion with Dr. Dhruv Singhal.
I was already super nervous — on pins and needles — scared to death — because I already thought I was going to be officially diagnosed with edema/lymphedema. Getting that call made me even more concerned, because I just knew that meant they had already diagnosed me with it, and that more tests weren’t necessary.
Well…I arrived about 45 minutes early and (finally) met Sarah Thomson in person. She has been such a big part of all of this — ever since I first contacted Beth Israel. Such a wonderful, compassionate, caring nurse. I could never thank her enough.
As afraid as I was, you have no idea how good it felt to see this inclusive intake form. All medical professionals and facilities should take note. This is a great example of healthcare that is safe and inclusive.
Finally Dr. Singhal arrived. As soon as he arrived in the room, I knew right away that I liked him. He gave me an elbow bump instead of a handshake (COVID…you know). We talked a bit. He examined my upper torso. Then he proceeded to share with me what had been decided in the early morning meeting with his colleagues.
I’ll make it short and sweet — Dr. Singhal and his team are 99.99999999% sure I do NOT have edema/lymphedema!!! Thank goodness! Dr. Singhal said he’s only had one patient in his career with lymphedema of the chest wall or abdomen…and it’s one of the worst things you can have. I had to ask him if he was sure at least three times. This man is an expert in the lymphatic system. He’s the Director of Lymphatic Surgery at BIDMC. And all of his colleagues completely agreed.
When I got ready to walk out of their office, I had to take a long pause — after thanking everyone immensely, of course (including two more elbow bumps from Dr. Singhal). I couldn’t hold back the tears — the happy, thankful tears — any longer. I had been holding this in for 7 long months…wondering if I really had edema/lymphedema.
Rather than edema/lymphedema, everyone agreed that I’m dealing with three things:
- I still have some swelling from the surgery + complications + the second surgery + complications.
- I have a very oddly shaped ribs. I’m a bit barrel-chested.
- So…because I now have no female breasts, PLUS my chest has concave places where there should be pecs, the swollen section (just below my chest) looks much more swollen than it really is. Apparently this is something that a lot of cancer patients experience after a mastectomy.
Now I am awaiting a call from Dr. Adam M. Tobias, an amazing plastic surgeon from BIDMC. Dr. Singhal took a ton of pics before I left and sent those, along with all of my reports, over to Dr. Tobias. I’m hoping and praying he can help me — that he can reconstruct my chest…and give me a chest that I can be proud of.
I want to personally thank everyone at Beth Israel Deaconess Medical Center for their care, compassion, treatment and communication last week. Not only did they make me feel confident in “my team” of medical experts, but they also made it clear how important it was for them to know, see and understand the real me…all of me. And they gave this #Trans man the best medical care and #Healthcare experience I’ve ever had. I want to especially thank Dr. Dhruv Singal, Dr. Brett Carroll, Sarah Thomson, and the doctor who referred me, Dr. Sumner Slavin. Special thanks to #Cisco for getting this all started for me.
Fingers crossed I don’t have Cushings. Yes, my endocrinologist wants to check. So this week I’ll be getting that test done. And fingers and toes crossed that one of the best plastic surgeons for #GenderAffirming top surgery, Dr. Adam Tobias will be willing and able to provide me with additional surgery to “repair” my chest from the initial complications I had.
If you need excellent medical care with heart, look no further than Beth Israel Deaconess Medical Center in Boston.
While I’m updating everyone, I thought I’d share a recent pic. This is me — after a year on testosterone. I guess I’m making a little progress. 😁 I’ve actually got quite a bit of facial hair — but it’s super blonde (almost white). So it’s hard to see. Just my luck! I’ve always wanted a nice beard and moustache.
#TransHealthcare #LGBTQ #MedicalCare #TransMan #Belonging #InclusiveHealthcare #Equality
Thank you to everyone following my journey. If my journey can help even one person — then it’s all been worth it. Send positive thoughts, prayers, whatever you feel comfortable with that Dr. Tobias is willing and able to fix my chest.
Peace and Love,
Liam
