After surgery was the worst.  Over the next two days I saw him maybe three times.  Each time, he called me “he” and avoided directly addressing me.  They had inserted a stint directly through the surgical site, a rubber tube that ran through a hole near the top of my pubic area, through the large open wound (about 4 inches long and half an inch wide) where my testicle and most of my scrotum had been removed.  The wound itself they had decided to leave open.  I was informed that I would be healing slowly over the course of the next three weeks as the wound closed on its own.  The surgeon refused to stitch the wound closed, even though I repeatedly voiced my concern that I would lose sexual function in my right inguinal canal.  This later turned out to be correct: the inguinal canal sealed shut where the wound had been and I lost sexual use of that part of my body.

The stint was the most painful, but the dressing changes were the hardest part.  3 times a day I was instructed to repack the open wound with gauze and a large pad, both of which quickly filled up with serous fluid, pus, and blood.  The first few days, the dressing would collect scabs as well, and each time it was removed, would pull against the stitches and the surgical site, which was extremely painful.  I expressed concerns about infection and mentioned once again that because of a congenital condition, mixed connective tissue disease, I was at risk for infection.  The surgeon pooh-poohed my concerns, and over the next six weeks I fought off a series of infections.

The first infection was borderline septicemia, and for the next two days I ran extremely high fevers.  I was on intravenous antibiotics, which had such high toxicity levels that my blood had to be tested every few hours.  I ended up being on intravenous antibiotics for about 8 days, and had over two weeks of antibiotics following.

I asked to see the doctor because the pain medication I was receiving, IV morphine, was doing almost nothing for my pain and I wanted a substitute or for it to be removed entirely, since it was not relieving my pain.  Dr Anderson dismissed my pain and said that no matter what there would be pain and that I should apply ice packs to the wound.

Problems with Dr. Anderson continued to get worse each time that I saw him.  He did not answer my questions and did not address my concerns, specifically: the danger of infection, the extreme amount of pain I was in at my surgical site, and my concerns about sexual function.  I directly stated several times that I would prefer them to stitch my wound closed to preserve sexual function in the inguinal canal.

Dr. Anderson referred to me during each of these brief visits as either “he” or “it”.  There was always someone else present, whether my grandmother, Norma Peterson, my mother, Tammy Lehman, or one of the nurses.

Dr Anderson handled me very roughly, especially during dressing changes.  After the third day in the hospital, I believe, I requested help finding an advocate in the hospital.  This person came from hospital administration and spoke directly with me.  Her name was _________________________ and she worked directly for the hospital.

She told me that this was not the first incident they’d had with Dr Anderson and patients, and that they were well aware of the problem.  My mother was present during this interview.  I told this woman that I wanted a different doctor: that the way that doctor Anderson was touching me felt violent and sexually violating.  I said that I did not want him to touch me again.  She said that she would try to find another surgeon to take over my care.  Later in the day, at approximately 4pm, she called me to say that I had been assigned a new surgeon, Doctor Glowacki.  Doctor Glowacki came to see me at about 6pm.  He introduced himself and supervised a dressing change.

(Note: this was the afternoon when the representative from the hospital called Iowa Clinic and spoke to Doctor Anderson’s staff.  She was assured that he had been advised of the change in doctors and that Dr. Glowacki would be taking over.)

The next incident is the most violent and the most difficult to talk about.  At approximately 5am the following morning, Doctor Anderson entered my hospital room accompanied by a nurse who I hadn’t seen before.  He threw on the lights, blew into the room, and asked the nurse to go get some equipment.  He complained that the room was too hot and adjusted the thermostat.  My grandma, Norma Peterson, had stayed the night with me.  We were both awakened by his entrance and very confused.  My grandma managed to say “You’re not her doctor - they changed doctors.”

Doctor Anderson blew her off curtly, and came over to my hospital bed.  I was barely awake but also very scared.  He said “let’s get this dressing change done,” whipped off my blanket, and put his hand in my crotch.  I complained, saying “no, don’t” and “what are you doing?”

Doctor Anderson then reached into my wound and tore out my dressing.  he did it in one quick, very painful motion, very violently, and it pulled all of my dressing, scabs, etc with it.  I cried out.  He threw the dressing in the trash, said “He’ll need a shower later,” and left the room immediately.

I was so confused and in so much pain that I didn’t realize Doctor Anderson had not replaced my dressing.  Several hours later, at 10am, when Doctor Glowacki came to see me, he noticed this and said that, yes, I should shower, and then they would repack the wound.

When Doctor Glowacki came in at that time he was extremely apologetic.  He said that it had been a mistake that Doctor Anderson had come in, that Doctor Anderson *knew* that he was no longer assigned to me, and that he, (Doctor Glowacki) was very sorry.

I asked to speak again with hospital administration.  I talked again with ___________ and she was quite shocked.  She informed me that Doctor Anderson had in no uncertain terms been reassigned and had been informed of this the day before.  She later came to my room with someone even higher up in the Hospital structure, Dr. _______________, who listened to my story and apologized.

I asked for reassurance that Dr. Glowacki would not enter my room again.  They said they could not offer any.  I therefore contacted the police, and that evening an officer came to my hospital room.  I discussed the incident with him and he took a report, but the following day I was informed that they would not help me press charges, and that it would be impossible to obtain a restraining order.

This is the third in a short series of posts recounting my medical problems over the last two weeks including my surgery and hospitalization at Iowa Methodist Medical Center.  These won’t initially be very polished, I’m more concerned with getting my story written down.

Part Three: Surgery

I finally got to see the surgeon minutes before the actual surgery was scheduled to begin.  In the room with me were both of my grandparents and my mom.  The surgeon, Doctor Markham Anderson, came into the room in a rush.  He briefly introduced himself and started talking about me in the third person.  “Is he ready for surgery?  Does he have any questions?”  My grandma Karen chose this moment to introduce herself: “I’m Karen, I’m…. his… grandmother.  It’s very nice to meet you.”  All i could do was close my eyes for a moment and stay on target.  I asked the doctor to speak to me.  I told him that I wasn’t a “he”.  And I did something that I can be very good at sometimes: I used my teacher voice and body language to seize and hold his attention and made him answer my questions directly.

We went through the list again: what will you actually be doing?  What do you think you will have to take?  Do you understand that I value my genitalia and don’t want to lose them?  Do you understand that you have made me doubt that you have my best interests at heart?  *Do* you have my best interests at heart?

His answers were predictable, not entirely satisfactory, and once again I felt very, very scared.  I emphasized one last time that I didn’t want to lose anything that I didn’t have to; that I respected him as a surgeon (lies) and that I hoped that he would respect me as a patient and as a human being. 

Then, before he left the room, he decided to throw this golden egg into the air: “By the way,” he said, “what the uh, PC thing to call what you are?” 

“Well,” I said, “I’m a woman.”  And then he laughed at me.  He laughed at me in front of my whole family.  And they didn’t speak up, say anything, or even move.

“I don’t think there’s anything funny about who I am,” I spat.  I looked around at my family but they just sat there like rocks.  I looked back and he was gone, he had simply walked out of the room.  I thought to myself, “he’s going to cut off my penis.  He’s going to do everything he can to hurt me and there isn’t anything I can do about it, and no one to help me.  My family didn’t even say anything.  They just sat there.”  Their only response had been my grandma Karen saying, after the surgeon had left the room, “well.  That’s too bad.”  I could have gotten up off the table and punched her.  Instead I just tried, and tried, and tried to keep it together.  Deep breaths.  Don’t panic.

It wasn’t more than two minutes before they came to wheel me into surgery.  All I could do was try to breathe.  My family started to follow me down the hall and said things to me that they thought were encouraging.  I was crying, forcing my eyes open and trying hard to breathe, to not panic.  But I couldn’t help myself and I couldn’t stop, I was moving into a full-blown anxiety attack and they were about to put me under.  i tried to hold it together as they wheeled me into the room and when they put me on the operating table, but by then I was flat-out bawling. 

The anesthesiologist and the nurses were really nice to me and told me that it was going to be okay, that they were going to look after me.  I stopped sobbing long enough to explain some part of what was going on, to tell them why I was so scared, and the things that the surgeon had said and did, that I was afraid of what he would cut off of me and out of me.  A totally sweet nurse did his best to calm me down by telling me that he was gay, that they were all going to look out for me, that they would treat me like family.  I sobbed quietly and nodded.  They asked me if I were ready for the anesthesia.  I said yes.  They put the mask over my face.  And the next thing I knew, I was waking up.

This is the second in a short series of posts recounting my medical problems over the last two weeks including my surgery and hospitalization at Iowa Methodist Medical Center.  These won’t initially be very polished, I’m more concerned with getting my story written down.

Part Two: Gangrene

The rest of the day is mostly a blur.  I was checked into the hospital room I would have for the rest of my stay, I was put on a morphine drip and IV antibiotics.  My grandmother and mom both arrived at the hospital.

I don’t want to belabor this point but I do need to mention it because it made my stay in the hospital and recovery more difficult: all day and at later times in my hospital stay, both of my grandparents and my mom kept “slipping” on my pronouns and calling me “he.”  This was a source of great anxiety to me.  First of all there are all of the usual reasons for why this sucks and is hurtful and dangerous that would apply in any other situation.  Briefly: there’s the stress it creates in me and the conflict and mistrust it engenders between myself and people who misgender me.  As I told my grandma Karen in the hospital, “when you call me ‘he’ it makes me feel awful.  It makes me feel like I’m not even a human being, let alone a woman.”  Broadly speaking, it’s also dangerous to misgender a trans person.  In this particular situation it was also contributing to a much more immediate problem, my hostile surgeon and my need to ensure that his hostility didn’t extend into his medical practice in any way.  But rather than understanding the situation and doing their best to back me up, my mom and grandparents decided that I was trying to create problems, that I wasn’t being “patient enough” with them even after they’ve had something like three and a half years to adjust.  This undermined their support and my ability to trust them at a time when I simply needed my family to act right and help me get through a life-threatening medical crisis.

As I say, much of the day was a blur, partly because I spent so much of it arguing with my family about my pronouns, which is at the very least just a terrible way to spend any amount of the precious little time we have on this planet.  Emotionally the situation was already extremely difficult, but because I felt so isolated, scared, helpless, and in addition to all that attacked by my only sources of support, I began to truly despair.  I didn’t feel that anyone was going to help me through the situation, and certainly no one was going to hear or understand my concerns as a trans woman. When I looked at my situation this is what I saw: 

I was a transsexual woman stuck in the middle of Iowa in need of immediate genital surgery to save my life.  The only surgeon available had already made it known that he didn’t respect me as a human being, and that situation was about to get a thousand times worse.  I had no sources of real-life support except for three resentful family members who continued to pick fights with me all morning while I was waiting for surgery.  I had managed to get a hold of a few friends via text or phone call, but there was literally no one I could call within two hundred miles who could actually make it to the hospital.  If i didn’t have the surgery I would probably lose my life.  If I did have the surgery it was going to be a total crap shoot as to whether and how I woke up: would I still have a penis?  No one could say for certain. 

This was the state in which I remained for hours waiting to learn when my surgery would take place.

I had the opportunity to talk to some of the nurses while I was waiting.  On the whole, I love nurses, and for that matter most people in medicine who aren’t doctors.  By and large they go out of their way to be compassionate and understanding and to help you understand what is happening to.  One of my nurses took the time to do some checking on my chart and calm me down, reassuring me that what the doctor had said in the chart was that they would probably need to drain the infection and maybe remove the testicle.  There wasn’t anything about a penectomy, or the second testicle, or my urinary system.

In hindsight, she did exactly the right thing by calming me down, but she was totally wrong about what was going on. 

In fact, by this point the surgeon was aware that I had a form of gangrene in my right testicle, called Fournier gangrene.  From what I understand it is a fast-moving, necrotizing infection that typically involves both aerobic and anaerobic bacteria.  The surgeon had told me earlier after seeing the ultrasound results that my testicle was (obviously) massively enlarged, at this point to somewhere between the size of a baseball and a softball.  In the ultrasound he could see that my testicle was filling with fluid, probably a mixture of blood and pus.  In addition to this being a horribly disgusting thing to learn about an intimate part of your body, it is also terrifying.  I was terrified, and realistically, I had good reason to be.

I later learned that the survival rate for this type of gangrene is frighteningly low.  Mostly it occurs in elderly patients or those with compromised immune systems or diabetes, which accounts for some of the mortality rate.  But even so, the overall mortality rate is approximately 40%.  That number jumps to 78% if the infection has spread to the blood (sepsis) before the patient reaches the hospital.  I was lucky that, so far as I know, my infection was at that point still localized.  Much later, after surgery, my mom asked the surgeon how long most patients wait before coming to the hospital.  (I may have mentioned this in my first post but I think it bears repeating.)  His response was that most people never come willingly because they are too scared or embarrassed of their condition.  I’m trying to remind myself of this whenever I get down on myself for waiting to tell someone and to go to the hospital.  It’s sad and scary and extremely dangerous that my reaction was actually not the worst one possible: I was one of the lucky ones who mustered up the courage and self-preservation skills to face my fears.

So at this point what was going on was that I had a necrotizing infection, surgery was scheduled for early afternoon, and I was being pumped full of antibiotics, pain meds, and IV fluids.  I was still waiting to see my surgeon before surgery because I felt that I needed to ask him more questions and really push him to tel me what was going on and what my situation was while at the same time advocating for myself because no one else around me was capable of doing that.  One thing i felt confident of, one of the few things, was that I did NOT want to lose body parts that were important to me because I was afraid to speak up or because no one else would or could do it for me.

Sometime between noon and 2pm they brought me down to the OR, put me in a gown and hairnet, and the waiting began.

This is the first in a short series of posts accounting my experience over the last week and a half including my surgery and hospitalization at Iowa Methodist Medical Center.  These won’t initially be very polished, I’m more concerned with getting my story written down.

Sometime last Sunday or so I was sitting at my desk in my leopard print robe when I stood up half-way to get something from a higher shelf.  My current “desk” is really a system of shelves bolted into the wall.  The shelves rest on metal brackets and most of the time are secured by loose pegs that fit into the brackets.  Forgive me if my terminology is hideously wrong; basically they are heavy boards that rest on metal things that stick out of the wall.  As I stood up to get whatever-it-was from the highest shelf, I bumped it from below, causing the shelf and several heavy things to slide toward me and fall on me.  I threw up my hands, and half-sat down as the shelf fell on me before I fell backwards out of the chair.

                Because I am a night owl, this happened at some ungodly hour of the night like 4am.  I screamed and moaned, pushed the shelf off of me, and after catching my breath made it to my bathroom where I threw up, like a lot.  My crotch was pretty badly bruised and was extremely painful.  I called out again and again for help but nobody heard me.  So I lay on the bathroom floor for a while, threw up again, and then waddled upstairs for an ice pack.  I looked at my crotch: my penis and right testicle were already bruised and part of my scrotum was cut, although not very much or very badly.  In retrospect I think that the shelf must have either crushed my testicle, or crushed the various veins and seminal vesicles and stuff that connected it to the rest of me, or both.

                Then I did one of the stupidest things I have ever done in my life: I didn’t wake anybody up or tell anyone what had happened.  I didn’t tell anyone for over a day.  I iced my crotch, took some Tylenol, and sat down on my couch for several hours just breathing.  I took a good look at myself several times: I wasn’t bleeding, but my penis and right testicle were bruising deeper and deeper colors of purple.  I wasn’t cut very badly, just very badly bruised on my testicle, or so I thought.  I fell asleep for a while, then got up, got dressed, and went about my day.

                As the day went on my crotch became increasingly painful.  There was very little blood still, but the testicle was swelling.  I tried to tell myself that I had probably just bruised myself badly and that everything would probably be okay after a while.  I spent the whole next day in my bathrobe.  I told my grandmas that I was okay, just feeling ill and very achey.  My testicle just kept getting bigger and bigger, and I kept getting more and more scared.  I tried not to move around too much and thought very hard about whether I needed to go to the emergency room.  At least twice I almost said something but didn’t.  I thought that I might wait until my grandparents went to bed and then drive myself to the emergency room so that they wouldn’t stay up worrying about me.  I seriously don’t know how I would have done that in the condition I was in, but it seemed like a good idea at the time.  I went back and forth about whether I should go, and when.  Mostly I felt afraid, shameful, and dreaded any and all outcomes: I could be turned away.  I could get bad health care.  What if they had to cut out part of my crotch?

Initially I hadn’t said anything to my grandparents because I didn’t want to scare them, or, most stupidly of all, because I didn’t want to have to explain the whole accident and talk about my bruised, swelling testicle to my lesbian grandparents.  My biological grandma was also once a nurse, and I imagined that she would insist on seeing my crotch (shameful enough,) then panic and call my mother who is also a nurse, who would react in exactly the same way.  But I was also afraid that the longer I waited, the worse things might get.  My main concern about going to the emergency room was that I would encounter some sadistic, transphobic doctor who would either turn me away and laugh at me, OR who would take the excuse to mutilate my genitals beyond recognition.  Perhaps someone would even kill me either through neglect or bad medicine.  It’s an understatement to say that this has been known to happen, especially in the Midwest where I am currently staying. 

The chances that I would interact with understanding, professional, helpful health professionals without having to deal with a mountain of bullshit a mile high was, and is, nil.  I was scared that the ER staff wouldn’t listen to me or take me seriously; that they might decide that since I was a transsexual I must have done this to myself on purpose, that it was a kind of self-mutilation.  Maybe they would throw me in the psych ward.  I was worried about how I would pay for emergency health services.  The words “infection” and “hematoma”  and “abcess” kept coming to mind and just wouldn’t leave.

Finally, fear got the better of me. 

I called my Mom at about 2 in the morning, about a day and a half after I had hurt myself, to ask her to drive me to the hospital.  I’m very disappointed to say that she didn’t help me or take me seriously.  She argued with me for about twenty minutes about why I shouldn’t go to the ER.  It bears repeating that she is a nurse and has been in health care in some capacity since she was 19 years old.  When I was a kid she even worked in the Emergency Room for several years: most days after school she would pick us up and we would wait in the ER waiting room until my Dad got off work and took us home.  But she didn’t believe me, and she didn’t help me.

“I have to get a test done at 8am; why did you wake me up?  Can’t you just wait until morning?  Just go to sleep and in the morning your grandma will drive you to the doctor.”

“I really think I need to go to the emergency room,” I said half-hysterically.  “Mom.  My testicle is huge.  It’s the size of a baseball.  And it’s starting to ooze a little.  I’m really, really scared.”

“You’re being hysterical,” she said.  “Just go to sleep and go to the doctor in the morning.”

“Mom, I am really scared.  What if it’s infected?  I think I need to go right now.  Can you please just come and get me?!”

“Why did you wait so long to say something?” she asked.

“Because I was scared!” I said.  “Because I’m scared of how they’re going to treat me.  There was this trans woman in Indiana just the other day who got turned away from an emergency room because she was trans.  You work at the hospital.  Please help me.  Just take me there.  Just come get me!”

“I really think that you should wait until the morning and go to a doctor,” she insisted, “nothing is going to get worse in the next few hours.  Really. … and I still don’t understand why you waited so long.”

“Because it’s my crotch, mom!  I’m a trans woman!  I’m scared about what they’re going to do to me!”  We went back and forth like this for twenty minutes.  At one point I asked her if her phone could receive camera pictures.  That was when I finally gave up.

“You know what?  Never mind.  I’ll get Grandma Norma to drive me to the ER.”
                “Don’t do that,” she chided me, “let them sleep.  Just wait until morning.” 

 I hung up the phone and, very slowly and painfully, climbed upstairs.  I put on a skirt and grabbed my bag and knocked on my grandmas’ bedroom door.  There was a stir.  My Grandma Norma came to the door.

“Hey honey, what’s going on?”

“Everything is fine but I need you to come talk to me for a minute in the kitchen.”  We walked out to the kitchen and sat down at the table “I am okay.  But I hurt myself and need to go to the ER.”

“Okay.  What happened?”  I explained very briefly that I had hurt my crotch and needed to go to the ER as quickly as possible.  She listened carefully and nodded.  “Of course.  Just let me put some clothes on and we’ll go.”

The half-hour drive to the ER went very quickly.  We parked the car, got into the ER, and within minutes were in a room with a doctor.  My Mom worked in ER the whole time I was growing up; I had honestly never seen anyone admitted so quickly and efficiently who wasn’t brought in on a helicopter.  It was a moment of surprising grace on the part of the universe.

I explained to two separate doctors what had happened to me.  Both were extremely courteous and understanding.  I tried not to hold out hope that I would get through this painlessly, at least in terms of people dealing with the fact that I was a young woman with an engorged testicle, but I felt relieved that at least some of the first people I talked to treated me well. 

We waited in the room for maybe two hours, though it felt like less.  I got pain meds right away, was taken down to ultrasound where I had a really excellent conversation with the ultrasound tech.  We talked about Phoebe Gloeckner and anatomical art.  My overall perception of health care has been that most of the people in the field are good folks who care about their patients, especially everyone who isn’t a doctor or surgeon.  Those tend to be the difficult ones, the doctors, at best a mixed bag even before I transitioned.  My experience at the hospital was completely characteristic in that regard.  Everyone I met until I met my doctor was more or less good to me.

                My first encounter with my surgeon, Markham Anderson, was at about 6am after I returned from my ultrasound.  My Grandma Norma was out of the room for a moment getting coffee so I was by myself.  The doctor was in the room for all of five minutes.  In that time he managed to scare me even more badly and to ask me whether I was “some sort of transsexual or something.”  He very briefly and unsympathetically told me that I probably had gangrene in my testicle, that it would have to be removed, and they would have to “take” any other dead tissue that they found.  He said that this was a life or death situation and surgery would have to happen later that day.

                “I understand that you have to take anything infected,” I said, “but please: can you tell me what you think you’re going to have to take?”

                “We won’t have any idea until we get in there.  I’m guessing we’ll have to cut out part of the scrotum as well.”

                “I’m just scared about this.  Do you think you’ll have to take anything else?”

                “We won’t know until we’re in there.  I can’t make you any promises.”

                “Look… I actually really like my genitals, so I’m scared about what you’re saying.  How much of my scrotum will you have to take out, do you think?”

                “Like I said, we won’t have any way of knowing until we’re in there.  But as long as I leave you a scrap of scrotum you’ll still have something to work with.  We’ll get you started on IV antibiotics right away.  After the surgery we’ll have to do wet to dry dressings for several weeks, which will be very painful.  Okay.”  (I later read his notes from this meeting in my chart; in them he refers to me as a “28 year old transevestite/transsexual.”)

                He left the room and I started to panic.  When my grandma came back I couldn’t even speak, I just held out my arms and she hugged me while I cried and calmed down.

                Finally I managed to tell her what had happened.  She got a nurse to come in and she reassured me that Doctor Anderson was a very good surgeon but had an awful bedside manner.  “You’ll be able to talk to him later before the surgery, okay?  Before they can operate you have to sign a consent form listing all of the things that they might do.  You can talk to him later and you can have people there with you to help talk to him.  Okay?”

                To be honest I don’t remember much of what happened from then until surgery.  I texted some friends to make sure that people knew what was going on and that I was more or less okay.  They got me on pain meds pretty quickly after I arrived at the hospital, but soon they had me transported up to my long-term room and had an IV started with a morphine drip.  I kept asking about the IV antibiotics whenever nurses would ask if I needed anything, but it took several hours for them to be ordered from the pharmacy. 

All I could think was that every minute I waited was potentially more of my scrotum, or penis, that they might end up cutting out of me.