Content note: surgery, death

If you follow my personal Twitter account, you know that I had masculinizing top surgery on July 6, 2021. While I’ve shared a good amount there about my journey, I have wanted to write up a more detailed post about this for a while. Mortality isn’t something that I have handled super well historically, though, so it’s taken longer for me to get here than I’d hoped.

Preparing for Surgery

MCAS

You may know that one of the conditions I deal with is called Mast Cell Activation Syndrome (MCAS). Mast cells, like the one in the photo above, are:

allergy cells responsible for immediate allergic reactions. They cause allergic symptoms by releasing products called “mediators” stored inside them or made by them. In allergic reactions, this release occurs when the allergy antibody IgE, which is present on the mast cell surfaces, binds to proteins that cause allergies, called allergens. This triggering is called activation, and the release of these mediators is called degranulation.

People can have too many mast cells or these cells can be wonky and release IgE when they shouldn’t. For those of us with MCAS, we get hit with symptoms (up to anaphylaxis) in response to exposure to everyday things that others aren’t allergic to.

MCAS symptoms usually include things like:

• migraine, headache, brain fog, cognitive dysfunction
• anxiety, panic attacks, depression, feeling dread, irritation, mood swings
• abdominal cramps, nausea, vomiting, diarrhea, constipation, bloating, acid reflux, food moving too quickly through you (dumping syndrome)
• high pulse/tachycardia, palpitations, high or low blood pressure, syncope (passing out, fainting) or nearly doing so, being lightheaded or dizzy
• flushing (esp of the face, neck, chest), hives, itching
• itchy nose, congestion, post-nasal drip
• throat itching, swelling, hoarse voice, increased mucous production
• wheezing, shortness of breath, chronic congestion, coughing, struggling to breathe deeply
• stridor (a harsh vibrating sound when breathing that I liken to sounding like the thing from The Grudge)
• blurry vision, eyes that struggle with being dry or red or watery or itchy
• sensitivity to sounds, tinnitus
• joint pain, chest pain, abdominal pain, deep bone pain
• numb or tingly skin, persistent redness/white marks/welts after scratching the skin
• fatigue, malaise
• mouth burning, gum inflammation
• struggling to control your body temperature (getting too hot or cold and being unable to cool down/warm up)
• genital pain, swelling, pain when urinating (similar to a UTI), vaginal pain, discharge, having to pee often, uterine cramps, or bleeding

Other symptoms not related to an immediate MCAS attack include things like weight gain and retention (despite low-calorie intake and exercise), smelling things others can’t, and taking longer to heal wounds.

You can learn more about MCAS here.

 

My MCAS

I personally have reactions to things such as:

• Cleaning chemicals, heavy fragrances
• Red dye
• Alcohol-based or fake sugars, such as aspartame
• Stevia, ragweed
• Tylenol, acetaminophen
• Some forms of exercise
• Skin friction or pressure
• Bug bites
• Stress, emotional distress
• Changes in humidity, barometric pressure, temperature

I take medications like Singulair, Zyrtec, and Pepcid daily to help control my MCAS. If I have an MCAS event, it also tends to stir up both my asthma and migraines, too. I try really hard to avoid the triggers above. If I can’t, I have some other meds that I can use during an attack, including an epi-pen.

About a month prior to surgery, I met with my allergist. We talked over steps that I could take to mitigate the risks of an event during surgery. We decided on doubling a lot of the medications I’m on for a few weeks before and after. I went ahead and started on that the next day since we were about two weeks out.

During my pre-op appointment, I made sure to speak with my surgeon’s assistant again about the MCAS. I made sure they had the contact info for my allergist to confer with him if needed. Really, I did everything that I could to prepare for my MCAS possibly interacting with surgery. It was constantly on my mind, and I was so incredibly nervous. Even the other steps I needed to take prior to surgery felt weird to me.

 

Other Steps

I stocked up on the one brand of bandaids that I can use. Welly is, thankfully, available at Kroger, Target, and more. They’re also really cute!

We also stocked up on edibles. I just do not handle opiates well and didn’t want to take them after coming home.

My rheumatologist and I met. I had to stop my Kineret two weeks prior to surgery. I was supposed to hold off restarting until two weeks after. That wound up being longer due to healing time. We made sure that my rheumy and surgeon connected, too.

 

The Few Days Before

My partner drove from Ohio to Wisconsin, surprising me by showing up a day early at my door. I was able to take them to some of my favorite places around Madison. We also got to meet up with their aunt a few times. I absolutely adore her, so it really helped.

The day before surgery, friends that I hadn’t really seen during most of the pandemic came over. My friend Halley organized a meal train for me, too, meaning we didn’t have to worry about dinners. It was so nice to be able to see everyone, especially since I love being that person to friend-matchmake.

 

Pre-Surgery

I think the thing that made me the most nervous was getting ready that morning. The drive to the hospital felt so odd, and I was so very nervous.

Those nerves were calmed when the anesthesiologist scheduled to do my surgery came in. He asked me about MCAS and what my symptoms were. To my surprise, he knew about it! (That’s pretty rare, sadly.) He had been doing surgery on a patient years ago who had an MCAS reaction. Because of that, he dove in to learn everything he could about it. Now, he’s something of an expert on it in the anesthesiology world, even presenting on it at conferences. We talked through the steps he thought would be best: starting my IV and administering steroids beforehand and then completing two nebulizer treatments.

While I was still understandably nervous, I felt so relieved to have someone who got it setting up the plan. This anesthesiologist got pulled into another surgery but briefed the one who took his spot on MCAS as well as what to do.

I honestly think he saved my life by doing so.

 

In The OR

After saying goodbye to my partner, I was wheeled back to the operating room. As we got back there and I was transferred to the bed I’d be on for surgery, a nurse was holding my hand and telling me that I would be okay. The anesthesiologist asked me what I liked to do for fun. When I said hiking, he began to paint a beautiful picture for me.

“Imagine you’ve been hiking for a little bit. You’ve been in tree cover for a while, but you start to see a clearing ahead of you. Your feet get touched by the sun. As you move into the clearing, you feel the sun’s glow move further up your legs…”

And then I was out.

 

Post-Surgery

The next thing I hear is the voice of someone new. He’s on the phone, telling the person on the other end that someone who just finished surgery has to stay overnight. The patient had a reaction that included mast cell degranulation, bronchospasm, and desaturation along with a systolic blood pressure number over 250.

“Fuck,” my inner voice said. I immediately knew he was talking about me.

About to pass out again, I opened my eyes for two seconds to look down at my chest. “If I had this reaction,” I thought, “and they didn’t even chop off these titties, I’m asking for a refund on my mast cells.”

Thankfully, I saw a flat chest wrapped in a post-operative binder.

 

Wait, What Does That All Mean?

Intubation is the process where OR staff insert a tube into the throat to help someone breathe during surgery. As they began to do this, my mast cells began having a reaction to general anesthesia (GA).

To make a long story short, my mast cells saw GA as a threat and began to overreact. This means that they began to release the various chemicals above into the body. Because of this degranulation, I began to have an asthma attack at a pretty inopportune time. The amount of oxygen in my blood dropped significantly, which is called desaturation.

My systolic blood pressure began to climb into the 260s. That means that I was sent into a hypertensive crisis. These kinds of events can easily lead to heart attack, stroke, organ damage, and more. I want to note that I normally do not have issues with high blood pressure. In fact, with POTS I usually have a lower blood pressure than I should. Mast cell activation, though, can cause these reactions when it occurs in POTS patients especially.

It’s also fun to point out the flood of interleukin 1 into my body. When I’m on Kineret, I don’t experience as much additional swelling as that medication blocks interleukin 1 from binding with IL-1 receptors. When I haven’t been on it for two weeks, though, it can’t do that. More swelling generally means a longer recovery time.

 

Oh

Yeah, this was not awesome.

I woke up here and there a few times in the recovery area before I got taken up to a room. In fact, I was about to pass out again before we got going. The person tending to me, though, pointed out that my partner was on the other side of the door. I managed to make myself stay awake and got to see them as the doors opened.

I don’t know that I’ve ever been so relieved.

My overnight stay in the hospital went mostly fine. The pharmacist on staff was upset I brought my meds in an organizer instead of their bottles. The hospital also wouldn’t let my partner stay with me overnight. While it sucked, I’m also really glad they were able to go get a good night’s sleep in a real bed.

Those yellow knobs over my nipples above stayed on for about a week. They help protect the nipnop and encourage grafting, since my nipnop had to be resized.

The next morning, my surgeon came in to talk about what happened. She warned me against having another surgery, especially because those reactions often increase with exposure. As much as that sucks, I’m also more than fine never electing to do that again.

 

Healing

The next few days are a blur of trying to watch YouTube videos or shows with my partner but falling asleep instead. I think it only happened twice where I thought I was okay to wait to take an edible, only to learn I was wrong. It’s not a mistake I like to make.

Friends bringing over dinner and having leftovers during this time were so incredibly helpful. Halley even learned how to help with drains so that she could assist here and there once my partner had to leave. Having my partner around helped so much. Their mom even texted me T-rex pictures to remind me to not push myself.

I’m really so lucky to have amazing people in my life.

Healing took longer than anticipated. The drains sucked so much, especially once the holes around them started to close. We had to measure their output every morning and night.

Once I wasn’t gooping out as much gross goo or blood clots, I was able to get them taken out. That made a huge difference in my pain levels.

By August 2, most of the post-op tape had come off. I was able to start wearing real shirts again, too!

I wasn’t able to before due to limitations in arm movement. Part of masculinizing top surgery often includes some liposuction up into the arms to eliminate that extra chub we have when wearing bras. Between that and my actual chest needing to heal, I was restricted in movement for about a month.

By the time I was driving to move to Ohio in mid-August, I even drove a little with my shirt off!

I still do get some zapping sensations from the nerves reconnecting. It’s uncomfortable, but not always painful exactly.

The Fascia Release for Top Surgery course that Brooklyn Strength does has been amazingly helpful to work on scar tissue. Between that and moisturizing with aloe spray, my chest looks pretty dang good today.

I’m incredibly happy with my chest. Between that and my testosterone levels, I’m beginning to really and truly see myself. I like my body and my personality, something I don’t know that I could have ever said before.

While I wish that I didn’t have to deal with facing my mortality, I think this all helped me process a lot around my fear of death. That’s something that I’m still unpacking, to be honest. I probably will be for a long time. I know how to deal with uncertainty and grey areas now on top of how to actually rest. That will always feel weird to me, I think.

My sister told me that I was more ‘me’ after I started testosterone. All I can think about is how much more ‘me’ I am now with this flat chest, living in Ohio after moving for love.

 

Things I Found Helpful

• For those about to go through top surgery, I pulled together a list of things that helped me on Amazon
• The Fascia Release for Top Surgery course from Brooklyn Strength
• Twitter thread on top surgery recovery
• Twitter thread on MCAS + top surgery
• More photos of my top surgery recovery are in this Google Drive folder 
• How testosterone has continued to change my life after 21 months on it