Surgery Week

My surgery was scheduled for Thursday morning. I checked in to my Airbnb on Sunday. To be honest I am not sure arriving so early was necessary, but I didn’t know how the bowel prep would go so I wanted to make sure I didn’t have to drive the thirteen hours from home to Jersey City during it.

Monday my mom and I rode the train into Manhattan so that I could get my covid test completed at the hospital. NYU requires you to have a negative covid test even if you are vaccinated before surgery, they recommend getting it done 2-5 days before surgery. I had my results Monday night so I think the 2-5 days recommendation is for if you get tested at a location other than NYU.

Tuesday was a relaxing day. I met with my therapist that morning for our usual appointment. I also made sure to complete all my homework (I’m a college student) that would be due through the rest of the week and the first half of the next.

Wednesday morning was my preop appointment. My mom and I took the train in to Manhattan again, this time to Dr. Bluebond’s office. I met with one of the nurse practitioners who went over everything with me. During this appointment I also had pictures done. From my understanding Dr. Bluebond typically has pictures taken before preop, but I guess they just forgot to have me do them during my physical exam in March. Getting the pictures taken was pretty uncomfortable if I’m honest. The room where they take them looks like a legit studio, complete with light boxes, green screens, etc. Shortly after I got back to my Airbnb, I got a call from the nurse at the hospital confirming my check in time for 6am, they also went over instructions for the anesthesia as well.

Surgery Day

My mom and I were up around 4am. We made sure everything I would need was packed up and called a Lyft into Manhattan. The surgery and hospital stay happens in the Kimmel Pavilion, which is the new swanky part of the Tisch Hospital. Once I arrived at the hospital, I went up to the fifth floor where the surgical check in is. There they took my mom’s phone number so she could get alerts and I was given a wristband. Once all of that was completed, I was led back alone to the pre op area.

My time spent in the pre op area was about an hour or so. First, I met with a nurse who went over basic health information and I got changed into a gown. My mom was led back to sit with me once that was wrapped up. She and I waited until the anesthesiologist checked in with me. More information and consent forms. Just as the anesthesiologist was wrapping up, Dr. Zhao walked in and asked me if I had any questions. He also took down my mom’s phone number so he could call her when the surgery was over with. After Dr. Zhao left, there was a lull until finally Dr. Bluebond walked in. She asked me how I was feeling and we talked for about a minute or two before she left to get changed into her scrubs. Then a nurse came to take me back to the operating room. The nurse gave me a blanket to make sure I was covered in the gown and I gave my mom a hug.

Because I had given my mom the glasses that I wear, my vision was pretty fuzzy so I couldn’t make out much in detail. I walked down this long hallway with operating rooms on one side. NYU is a high-volume surgical site so there is a lot of a traffic here between the patients and staff getting to where they need to be. My operating room was at the very end of the hallway. Once I was there, the nurse guiding me went in ahead of me to make sure they were ready for me then I was lead in. The operating room they use is quite large, and very bright. One thing that struck me was just how many people were there, at least a dozen or so. I didn’t recognize anyone without my glasses so it was a bit disorienting.

The anesthesiologist I met with earlier came up to me and led me to the operating table. My first thought upon seeing the table was how much it looked like the gurneys used in lethal injection. My left arm was out perpendicular to my body and strapped down, this was where the anesthesiologist inserted my IV. My abdomen was also strapped down as well by a nurse. While all of this was happening, I was having a nice chat with the anesthesiologist who began administering a sedative. Our chat came to an end when she put the oxygen mask to my face, told me to take a few deep breaths, and that was it.

My memory of the Post-Anesthetic Care Unit (PACU) is a bit fuzzy, even with the memories I do have it was traumatic to say the least. The pain was excruciating. The nurses ended up giving me fentanyl but it did nothing to dull the pain and after the first hour of or so the nurses stopped listening to me. I remember my mom coming in at some point to see me but it was only briefly. I found out later afterwards from my mom that she was only allowed to see me for five minutes and she was horrified by the chaos in the PACU and how poorly I was doing. At one point I spiraled into having a panic attack because I was crying and felt like I couldn’t breathe with the incisions in my abdomen, the nurses did end up giving me valium which calmed me down. Probably the most frustrating part of being in the PACU was how long I was there. I had been told to expect to be there for at most three hours–I was there for six. And the reason why I was there for so long wasn’t that my condition wasn’t stable enough, it was because they couldn’t find a transporter to take me up to my room for over three hours.

Once I had managed to escape the PACU and get moved into my hospital room, things improved slightly. My mom was there and I noticed that my pain levels and overall mood were better when I had someone to talk to, a distraction of sorts. But I still spent Thursday night in a haze of counting down the minutes until I could get more pain meds. As others have pointed out, a fair amount of the pain is from the gas that they use to inflate your abdomen so the robot can work. This pain tends to not respond well to opioids, and even if it did NYU is very strict about narcotics. I was on a schedule of 5mg of oxycodone every six hours, along with the ibuprofen and acetaminophen.

In terms of activity, Dr. Bluebond had me on bedrest for Thursday evening and night. I was also on a liquid only diet that night for dinner, I didn’t touch any of it.

Hospital Stay

Friday–day 1–was spent in the same haze of pain as Thursday evening. The nurses made sure I was standing up and making my way over to the reclining chair next to my bed, I was able to do this without much pain or discomfort. I just had to make sure I strained as little as possible to avoid damaging anything. This was the first day that I was given solid food. For lunch, my brain and my body had a bit of a mix up because my brain was quite hungry. When the food was delivered to my room, I could barely take a bite and felt nauseous immediately. Dinner was entirely ignored.

Saturday–day 2–saw a significant improvement in my pain and discomfort. They stopped giving me oxycodone on a schedule and switched to an as-needed basis. I would only take another tablet, Sunday afternoon for catheter pain, for the rest of my stay. Discomfort became the biggest struggle once the pain had reduced to manageable levels so most of the day was spent figuring out what positions I was the most comfortable in. I found that the chair was more comfortable than the hospital bed and that it was a lot easier to get out of the chair than the bed. If I laid in the chair leaned back resting most of my weight on the back of my butt and my legs up. This was the first day that I went on a walk, three total as this what the nurses told me I had to do. The walks were quite draining, as I found this was the time that the gas had made it way to my shoulders and the painful ache was exhausting

Sunday–day 3–was a continuation of the trends that occurred on Saturday. Pain was a bit more difficult this day, especially the catheter pain. To the point that I had half a tablet (2.5mg) of oxycodone. Unfortunately, the opioid did pretty much nothing to blunt the pain, only made me feel a bit more relaxed was all. This was the day that I noticed how different the quality of nurses was on the weekend versus during the week. My day nurse for Saturday and Sunday took forever to respond, to the point I just stopped bothering and did it myself, including things that I probably shouldn’t have been doing like turning off the IV when the transfusion was done so the alarm would stop beeping. Eventually I was the one reminding her it was time for me to take my pain meds because she just forgot I guess and I would’ve gone an hour or two off schedule if I didn’t call her. Her lack of response wasn’t for being busy, my floor was very quiet in terms of activity and every time I went for a walk, she was lounging in the nurse’s station on her phone. My night nurse over the weekend was better, but I was mostly asleep when she was there. Luckily my mom stepped in and did a lot of things, having support from your caregiver in the hospital can make the experience a lot less stressful. They did not add any new activities for Sunday, just that I would continue walking as I was able.

Monday–day 4–started off early (6am) with a member of Dr. Bluebond’s team coming in a removing the outer bandages. This was the first time I got a look at the results. The wound vac was also removed at this time. Kevin aka “Dilation Daddy” came in and went over what was going to happen on Tuesday morning to make sure that I was prepared and we also went over what had happened so far and what the discharge instruction would be. The most difficult part of this day was managing discomfort, the skin was hyper-sensitive and I could feel every move that my gown or blankets made and it drove me a bit bananas. The best way of alleviating this was assuming the same leaned back position but raising my knees with a blanket over them so none of the fabrics were in direct contact with my skin. This was also the first day that I got to shower, which was a bit of a tricky act. The floor of the bathroom has a drain, but the floor itself is flat so it can flood very easily. The nurse wrapped my arm in plastic and taped it down, effectively immobilizing my elbow so I only had one arm to wash myself with. In the evening, around 10pm, the night nurse came in and removed the foley catheter. The urology team wants to make sure you can successfully urinate before you are discharged, they even go so far as to perform two bladder scans to make sure you are emptying your bladder as best as you can. Urinating was a bit weird, I couldn’t really feel anything, and I never felt like my bladder was emptied. But I was able to pee, even if it went everywhere but up.

Tuesday–day 5–came with the most activity. This was discharge day, and I was expected to be out the door before 11am. Even though NYU’s official visiting hours are from 12pm-8pm, my mom was allowed to come up early in the morning to be there for me while I was discharged. Dr. Zhao came in first thing in the morning to remove the internal packing. He told me that because the peritoneal tissue at the back of the canal has never been exposed to air before, I might feel a bit nauseous during the removal. I expected there to be a lot of pain, but it was very mild. The feeling itself was quite alien, but there was no pain and only a bit of discomfort at the end. After this Kevin came in and he went over dilation with me again. He also asked if he could exam my canal and see what my pelvic floor muscles were like. Consent is big at NYU, expect everyone who wants to examine you to ask first. The first dilation was extremely stressful and by the end I had stress-sweated myself into a new hospital gown. After that I relaxed with my mom before the day nurse came in and had me douche for the first time. Kevin came back in again and we dilated for the second time. This dilation was much less stressful. There is a huge emphasis at NYU on the pelvic floor, even to the point of having patients see a pelvic floor physical therapist after discharge. After the last dilation, Kevin left and I began packing up to leave. NYU provides lot of supplies on discharge, basically everything needed for a few days to get started. Two wedges to rest legs on during dilation, pads to lie on during dilation, a mirror, some lube, and the dilators themselves. They also provide a waffle cushion to sit on. The nurse came in during the packing and went over the discharge instructions, then I had to sign her copy to acknowledge I had received them. Once my mom and I had backed everything up, I got a wheelchair ride to the lobby where my mom ordered a Lyft to take us back to our Airbnb.

Post Discharge Experience

Most of my days are occupied with the pill schedule, pain management, and dilation. One thing I made sure to do when I was discharged was to plug my pill and dilation schedule into the calendar on my phone so that I would get reminders about when I was supposed to do something. My dilation schedule is four times a day for fifteen minutes each. This translates into dilating every four hours that I am awake, 8am 12pm 4pm and 8pm. For the first three dilations of the day, I use an antibacterial, Metronidazole, along with lube on the dilator. The last dilation of the day I put a wound healing medication, Santyl, on the dilator. The pill schedule is acetaminophen and ibuprofen every six hours on a staggered schedule so I am taking one every three hours. Because I shower at nights, I douche before my evening shower. This cleans out all of the lube and allows the collagenase that I use during the last dilation of the day to absorb into the tissue.

Discharge restrictions:

Avoid lunges.

No lifting more than 10lbs for 6 weeks.

Avoid pushing, pulling or straining for 6 weeks.

No gym or strenuous physical activity for 6 weeks.

No sexual intercourse (VAGINAL OR ANAL) until cleared to do so after follow up appointment

The medications I was discharged with are as follows:

VANDAZOLE 0.75 % vaginal gel (first three dilations)

SantyL 250 unit/gram ointment (last dilation)

mupirocin 2 % ointment (if I experience any blisters)

lidocaine 2 % jelly (as needed if dilation is painful)

chlorhexidine 4 % external liquid (to clean the vulva, when used up switch to foaming cleanser)

ibuprofen 600 mg tablet

acetaminophen 500 mg tablet

docusate 100 mg capsule (laxative)

Senna 8.6 mg tablet (laxative)

polyethylene glycol 17 gram powder packet (laxative)

Upon discharge, I was also prescribed a dozen 100mg gabapentin capsules and eight tablets of 5mg oxycodone as needed for pain, they will not refill these.

Housing Post Op

Because I live quite far from New York City I had to book an Airbnb to stay in post op. My Airbnb is in Jersey City, right across the river from Manhattan. My mom and I drove to Jersey City rather than fly so we could have access to a car while we were there, for grabbing groceries and the like. Because my Airbnb isn’t in New York City proper, it can be a bit of a pain to get into the city. Driving is an option, but parking is expensive and traffic is bananas. Ridesharing like Uber or Lyft is convenient but expensive (~40-70$ one way). Public transit is cheap but slow and can be quite uncomfortable after surgery. That being said, getting an Airbnb outside of New York City can be save you a lot of money. The place I’m staying at is pretty nice and quiet, not to mention less expensive, so it was worth the hassle of dealing with getting into Manhattan.

Timeline

2020

January

First reached out to Dr. Bluebond’s office

Initial consultation date set for November 2021

February

Began work on WPATH letters

May

Started hair removal

June

Both WPATH letters completed

November

Consult moved up to January of 2021 and switched to virtual

2021

January

Initial consult via telehealth

Physical exam scheduled for March

March

Physical Exam

Surgery date set for November 2021

July

Education visit

Vaginoplasty class

September

Preop clearance completed by PCP with labs

November

Regular hair removal until three weeks before surgery

Surgery

Feel free to ask any questions and I will answer to the best of my ability :)