(Sorry if this is the wrong thread but I didn't see any Top Surgery specific threads to post in.)
As I'm sitting here 22 days post op for my 1st surgery and 12 days for the second one, I realize I need to share some factors which caused complications in my top surgery experience that even I, who did years worth of prep, wasn't aware of before going under the knife. I share this story not because I want to scare people out of having surgery, or because I want to complain (I am super happy despite how things went) but because I want to make sure others are as educated as possible when going through this too.
Obviously, my story is unique to me and not everyone will have the same results!
If you'd rather not do that much reading and just want to read what lessons I learned, you can scroll down past my story to the place where I list the lessons in order.
My top surgery story began 3 years ago when I approached my doctor for a referral to a surgeon for top surgery. I live in Canada where this surgery is paid for by our public medical program, so I know this may differ from other's experiences in that way. I waited about a year and still hadn't heard anything back, and then my mother was diagnosed with cancer so my transition was set on the back burner in a way. She passed about 4 months later, and then I took some time to grieve, before I reached out again to my doc. It turned out my referral had been responded to by the surgeon but my doc failed to let me know. That's lesson 1.
I was short-listed for my referral because of the lapse in communication on my doc's part, and was able to choose a surgeon from the 3 I was offered, and had a consult 3 months later. I will mention (since I had sought other's opinions about the surgeon I ended up choosing and wasn't able to find much) for any others considering choosing her, that I went with Dr. Jennifer W Robinson. Although there weren't many forum posts about her or post-op images available, I chose her because she had a median level of experience doing affirmation top surgery (5 years) and her wait time was a year as apposed to 3 years, but mostly, I chose her because she specializes in micro-surgeries and I felt that kind of specialty could leave me with great scars at the end.
I will disclaimer this with saying that NOTHING that happened for me was Dr. Robinson's fault. She did a great job, was calm and confident, and treated me with respect. Her medical assistant Julia is totally amazing, and her nurse Cynthia is ultra-professional and caring. I recommend Dr. R to anyone considering her as their surgeon. Her bedside manner is a little "cool" in that she isn't the most warm-fuzziest kind of person, but I prefer my surgeon be GOOD at their role, rather than friendly. She is definitely good. My results are still in the air (as I am so fresh from surgery) but so far things are looking pretty good.
In the first week post-operative, my days were pretty typical of anyone having had top surgery. I had drains, swelling, bruising, pain, had issues with mobility and movement, some nausea from pain meds... all in all it was a pretty "normal" post-op week and what I would expect from the research I'd done. Things got a bit hairy in the 2nd week. I began to have increased pain and swelling on my right side, and developed redness near my incision, mostly on the right but a small amount on the left, and the right side drain area had an "odor" that wasn't pleasant. I was running a low-grade fever, but I read that it was normal to do that post-operatively. I had my drains out on the 6th day post op. I mentioned the issues to the nurse (my drains were taken out by a different nurse than the one Dr. R usually uses, due to a scheduling goof up on my part) and although things weren't great the nurse said they seemed okay. A few days later I saw my regular GP, and he prescribed me an antibiotic to treat what he thought was a "surface skin" infection.
That night, things went bad. I was straining a little while using the toilet (sorry TMI) and I felt a "pop" in my chest and suddenly a lump appeared next to my sternum. That lump grew fast and spread into my pec. I immediately went to the ER (Lesson 2 and 3) and my right side blew up before my eyes and was extremely painful. The wait to be seen was agony, the ER staff thought I was complaining of swelling and post-op pain, I couldn't get it through to them that the swelling was happening SO fast. They called the plastic surgeon on call from Dr. R's clinic and I was brought in for emergency surgery. They had to open up my right incisions and drained a massive 2 liter hematoma from my chest. I was left anemic and had a new drain put in, that drain just came out a few days ago.
In the days after that 2nd surgery I met with Dr. Robinson. Her on-call surgeon who drained my chest also did a swab in the OR, and it was discovered that I had an infection of a type of bacteria you can get from cats. It lives on their body and doesn't hurt them but can be fatal to humans if it gets into a wound. The bacteria had eaten tissue in my chest and the blood vessels broke open when I was straining and caused a massive bleed. While in the hospital for the 2nd surgery the bacteria was spreading into my arm and I developed a large and painful lump near my armpit on my right arm, too. The doctors and nurses didn't yet have the results of the swab back, so they summed it up as post-op swelling despite the strange pink pattern of swelling on my skin.
I do have a cat (lesson 4) and he does sleep on my bed, but when we traced back, I also remembered my roommate/caretaker touched my drain opening with her bare hand when the drain was clogged with a clot (lesson 5).
So, what have I learned that I want to share?
Lesson 1: Follow-up with your referring doctor every 3 months, don't worry about pestering them. Often, clinics get busy and they miss referrals being sent back from surgeons. Yes the wait time is long, but it can be a lot longer than necessary if your referral is missed and they have to back-track for you.
Lesson 2: Get stool softeners and USE them. If you're backed up and can't go to the toilet not only is it not super nice to experience, but what I didn't know, was that you can actually pop your internal stitches if you're straining to go!
Lesson 3: Use your surgeon's On-Call Number!! I was concerned I would be bothering the surgeon with something they'd tell me to just go to the ER for. I ended up waiting an hour longer than I should have, to be seen in the ER, only for them to end up calling the On-Call surgeon anyway. If I had called the On-Call number the surgeon would have called ahead to the hospital and I wouldn't have been triage-d or made to wait at all, I would have been examined immediately and taken to surgery in minutes rather than hours.
Lesson 4: If you have a cat, please be warned that they carry a type of flesh eating bacteria that although it does not hurt them, can be fatal to humans if it gets into a wound. This is a rare situation but it DOES happen.
Lesson 5: WASH YOUR HANDS! Even if you don't have a cat at home, wash your hands often, and ESPECIALLY if you do have a kitty. Also, make sure your post-op caretaker also washes their hands frequently and NEVER let them touch any of your incisions or tubing without gloves on. Cats or not, this is hugely risky and not something everyone thinks about until its too late.
Overall, my journey has been a learning experience and I hope it can help others prevent the same happening to them. I still have pain where in my sternum area where the bacteria ate tissue and blood vessels popped open, and much of my right side is still swollen where the hematoma separated my tissue from my chest wall, but the antibiotics they gave me (once they knew what bacteria it was) have helped me and I will have many more weeks of recovery time until I am normal again. I am grateful to the surgeon on call for coming to my aid so quickly in the middle of the night, and I feel confident that my results will be positive and I'll look back on this with new knowledge gained. I am happy I had surgery, I feel the most "normal" I have ever felt in my adult life. My body is "right" now, and it's good to have that feeling. I wish my story could be a positive one all around, but I know that 5% of top surgeries have complications and I am proof that this is true. So, be safe, and good luck on your top surgery journey!
