I’ve only had four surgeries in my almost 70 years: in 1972, 1991, 1992 and 1994. I thought I knew what the experience would be like. Then, I had a hysterectomy in 2019 and learned first-hand just how much our health care system has deteriorated.

If you or someone you love is having surgery, reading this could save you time, trouble and complications.

The Background

We live in the San Francisco Bay area, with access to some of the finest medical care in the world. Excellent insurance. A PCP extremely well-connected to the finest surgeons, oncologists and others. In fact, we engaged her after I watched her quarterback horrifically serious illnesses for three friends. It has paid off in the specialists she’s gotten us in to see for various issues. We’re lucky we can afford her.

The Symptoms

Post-menopausal bleeding. Which I tried to ignore. But I knew that any post-menopausal bleeding was a sign that something was wrong. After a couple weeks, I couldn’t hide my head in the sand any longer.

When the ultrasound radiologist, herself, comes out to talk to you it gets your attention. That NEVER happens. Ultrasounds showed abnormal thickening of the uterine lining. I needed a biopsy.

My GYN

She’s very good. She’d done an in-office biopsy before, but this time, she couldn’t get a grip. Literally. So no-go in the office. My choices were to go under anesthesia for an outpatient biopsy and deal with what to do later. Or…

….just have a complete hysterectomy and a biopsy in the OR.  Far too many I know have dealt with GYN cancers and some have died.  Even if I was in the clear, I didn’t want cancer to brew later. So I wanted it all gone. Done.

My Surgeon

Because my cancer status was unknown, my GYN would assist at surgery but a well-regarded GYN oncology-surgeon would actually do the procedure, just in case, with high-tech robotic assists. I liked him. I knew he had a good reputation.

Neither doctor really thought it was cancer but, as a surgeon told me 30 years ago when he removed a breast lump: “I’ve been wrong.” Better safe than sorry. My breast lump was benign. I thought my uterus would be, too, but who knew? Had to find out.

The Surgery

Most hysterectomies today are done laparoscopically. Four little holes. And my surgeon was expert at robotic assistance. I tried not to think about the article I’d read years ago about complications from robotic assists.

Some 30 years ago, I’d had uterine surgery to remove a boatload of fibroids. At the time, I hoped to bear children. That didn’t happen, though.

“This isn’t going to be one of those easy hysterectomies,” my surgeon now told me. “Your prior surgery means that you have scar tissue, which tends to adhere to all sorts of stuff, like the intestinal wall. You will probably require an abdominal incision, too.”

I knew that meant recovery time would be longer, since I’d had that incision 30 years ago.  I knew what to expect.

KNOW WHAT TO EXPECT If you’re having surgery, make sure you know what to expect, too. No surprises. In advance of your appointment, list all the questions that might come up if you are having surgery, no matter how stupid you think they are. Ask about the preparation, the surgery and the recovery. Ask your surgeon all of them.

Pre-Surgery Tests

My surgeon wanted three things to clear me for surgery: an EKG, a chest Xray and a blood test. I’ll just say straight out: do not delay: do those as soon as you doctor wants them done. In case there are further tests. I got pretty squeezed because I put those tests off.

My EKG was “abnormal” and required further testing: an ultrasound. And what a scare it was to have to go through this because of an abnormality.  My internist got me into an excellent cardio and she reassured me all was well, then gave me a new blood pressure med to stabilize me before surgery. Another reason to get those tests done as soon as your surgeon wants them.

My chest Xray. Mention that to any former smoker and you can see the naked fear in their eyes.  When I had surgery 30 years ago, they “found something alarming” on my chest Xray. It turned out to be nothing: a granuloma. Probably something I’d inhaled years ago that had calcified.

Until the CT clarified it back then, I was terrified. I figured this would happen again so I explained to the nurse. She told me how to find the old Xrays. But the hospital didn’t keep 30 year old xrays –no way to compare. So I waited for the call that they’d found something (the granuloma).

Just when I thought it wouldn’t come, it did. I needed a CT. And while there was no lung cancer, my surgeons’ nurse ran me through some alarming questions about my lung health. She was puzzled that I didn’t have lung symptoms, a history of pneumonia, been hospitalized for it, etc. This really was alarming.

However, I got cleared for surgery at almost the last minute. So get those tests in the appropriate time period.

The Hospital

My late BFF spent time at Stanford Medical Center and complained about the constant doctor exams. Teaching hospital stuff. So I was thrilled to know that I would be at  an excellent (different) hospital where I’d had my 3 surgeries 30 years ago. (Yes, three: breast lumpectomy, myomectomy (fibroid removal), gall bladder. I figured it would be as good as it was 30 years ago. I figured they’d have a hospitalist (a dedicated in-house doctor) and I’d avoid having a dozen student docs constantly barging in.

Hold that thought.

The hospital began emailing me with a link to maybe 20 short videos about my surgery and then, after I scanned the content and decided not to watch them–so many! they began calling me with recorded messages admonishing me that I hadn’t watched them and needed to.

No I didn’t. I did not. And I did not like this harassment.Very high tech and very low touch. Did. Not. Watch.

Medications List

Nurses and admins went over my current medications list at least a half dozen times, either in phone calls or at the doctor’s offices. The high tech medical info system spit out a list of every single thing I’d taken over the past 10 years–including meds my doc prescribed before travel “just in case” and mega doses of prednisone I took when I lost my hearing –and assumed I was still taking them.

“No,” I told them. “I take two regular meds and now I take the additional BP med.” I corrected them each time. Including the night before surgery. Each time they had it wrong.

Make sure they know exactly what meds you actually are taking–and correct them as many times as needed. Make a big deal about this because it may affect what else they prescribe after surgery.

Doctor contact

At my presurgical briefing, the surgeon’s nurse told me “You won’t see him, and if you do, you won’t remember it.”

Ok, that seemed right for day of surgery. I knew I’d be out of it. She gave me a folder full of information.

The afternoon before surgery, the hospital called to go over when to stop eating and drinking. I had a handout from my surgeon so I knew already, but they did a final review. “They typically assign anesthesiologists at 5:30pm so. you should get a call from yours before 9:30pm.”

I waited. My super early surgery time meant I had to get up at 3am but I left my phone on. No call.

In the pre-surgery prep room nurses efficiently got me ready. I used self-hypnosis to prepare before surgery and in this room I used it to handle anxiety and was as calm as a cucumber. The anesthesiologist popped her head in to say hi. That was it.  They rolled me in and within 2 minutes I was on the table and the anesthesiologist was saying “I’m giving you medication to put you ….” Lights out.

Make sure all of your questions about anesthesia are answered in advance. Do not wait for the doctor to call you because she may not.

Recovery Room & Hospital Room

I have no memory of it. I have no memory of getting to my room. None of it.

Eventually some of my wits returned. In my room had some discomfort from the catheter that was still in and got a dose of Tylenol. I started using self-hypnosis and never took another pain drug.

I noticed I had a roommate and wondered why.

Make sure you know if you are in a private room or not.

The biggest shock

I spent the night. No doctor checked on me, only nurses. That was in fact, the biggest shock. My surgeon’s nurse was literally correct: I would not see him. I didn’t realize that meant NOT AT ALL. I had memories of my last surgeon, 30 years ago, who I loved. After my breast lumpectomy I remember him yelling in my ear in recovery “Carol! It’s NOT cancer!”  I can hear it now and I was well out of it. I loved him so much for doing that, making sure I knew right away– I engaged him to remove my gall bladder. He’s retired now. But we had many a laugh in our couple of appointments all those years ago. When doctors were more than money machines.

After surgery it was recommended I get up and walk around as much as possible. I did that about every hour. All night.Why wouldn’t I?  I was eager to get better!

In the morning, I was told path was out for testing but it didn’t look like cancer. Also,  I could go home around 11, assuming I could pee and poop after they removed catheter. That happened. Still, no doctor.

Oh, wait. My surgeon’s resident poked her head in and said “hi”. She did not touch me. Or ask how I was. “Hi.” She didn’t even come in the room.

Well, “hi!”  But WTF?

The catheter had come out but I was moving slowly so I told the nurse I would take my time and go home around 1pm.

“Oh no,” I was told. “Discharge time is 11. You must go then.”

WHAT? Is this a hotel? Am I checking out of my room so the maids can clean it for the next victim?

Make sure you understand how discharge works and who exactly will examine you after surgery. Possibly I would have learned about discharge in one of the too-many videos I didn’t watch but the lack of doctor exam sits squarely on my surgeon.

The Incision

I was happy that I had 8 pages of post surgical instruction from the surgeon’s office. “Do not touch the incision,” it warned. Surgical glue was used. There were no instructions on cleaning the incision. Just “don’t touch it.”

So, ok. I didn’t touch it. In the shower, either.

After a few days I could feel the glue starting to hang off but I still didn’t touch it. I could also see that the incision was starting to get red. I called the surgeon’s office. The nurse told me this was normal.

The next day the incision was getting rank. I could SMELL it.  I called again. I asked to be seen. I couldn’t be seen unless I sent a photo of my incision to the nurse and then they might let me see a Nurse Practitioner. MIGHT.

WHAT? Ok then. I had my husband photograph the angry red incision.

THEN I got an appointment.

“You are right,” the NP told me. “You caught it before it got badly infected but it was headed there.” I was told what to use to clean the incision and given antibiotics.

Monitor your incision. Make sure you understand how to care for it. Oh–make sure they actually TELL you how before surgery. Which mine didn’t. And understand what care is available to you if there is an issue and how that works.

My come to Jesus meeting with my surgeon

At my two week post-surgical visit I confronted my surgeon and told him exactly how I felt about the lack of care I’d received. He was quite surprised and even taken aback at this. After all, surgeons are gods, right? Well, no. My father was a doctor. My brother is a surgeon. Not. Gods.

First, I protested that I’d seen no doctor in the hospital. Not at all.

“My resident saw you!” he said. Umm, not exactly. Popping your head in the door and saying “hi” is not an exam. I made that clear.

Then, the incision. “But there are instructions on how to care for it on the handout, I wrote them myself!” he said. I suggested he go over them again: I’d read them numerous times: no instructions on incision cleansing.

I also told him how I felt about my inability to be seen for the incision, once it was obviously an issue. The bigger issue was that I had no access to actually seeing a doctor.

“Well, if we saw everyone we’d never have time for surgery.”

Now THAT was eyebrow-raising. I saw RED.

“You might see fewer patients but they’d get better care,” I told him. “And maybe you wouldn’t get a new car every year but you’d be a better physician.  Maybe you should decide if you’re a healer or just making money.”

To say he was shocked that I had pushed back and held his feet to the fire is putting it mildly. He was being shadowed by a medical student and I was amused to see her eyes get really wide as I spoke.

DId I mention that at my follow up visit, he did not do an internal exam? Just looked at the incision. Looked at it. Hold that thought.

Don’t hesitate to make your feelings known to your doctor. Clearly. Directly. Fearlessly.

My surgeon was delusional

And then he cleared me for all activity. At the two week mark. Even aerobic exercise. I looked at him like he was crazy. I was absolutely not ready for exercise or even most normal activities–and I am a stubborn girl who gets right back to it ASAP. I do not stay down longer than I have to. But my body was clearly not ready to dance it out.

He was certainly…delusional.

So I used my own judgment about what I could and couldn’t do. (This is new for me, normally I would just plunge back into everything if the doctor said it was ok and that would’ve been a really baaad idea.)

At the 6 week mark I still noticed some bleeding so I visited my GYN.

“You’re not healed internally,” she said, after an exam. “I can see that.” Yes, an actual exam. My first since before surgery. “At your age (68 at the time) healing is much slower.”

“But (surgeon) cleared me for all activity a month ago!” I pointed out.

She looked a little uncomfortable. “Well, I’m a bit more conservative than he is.”

If a doctor tells you it’s ok to resume normal activity but your body says something else, listen to your body.

The bottom line

These days, we must all be our own advocates. We must learn as much as possible about what is going to happen, how and when. I’m still not going to watch a zillion videos (why do people think that’s how we want to get our info? Just because they don’t read? Hey, I read!). But I made a lot of assumptions based on my experiences that were almost 30 years ago–I should have asked far more questions than I did.

If you’ve got any advice for those undergoing surgery, I’d love you to share it in the comments.

If you’d like to talk about how hypnotherapy can help you control pain, hit me up at ccassara (at) gmail dot com.

And if you’d like to see our healing tools, the ones that get all five-star reviews, find them here.

 

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