HELLP – Becoming Bionic

It only takes one long-term stay in the intensive care unit to turn a person into a bit of a basket case when it comes to hospitals. I’m 19 years past my six-week stay in the ICU and still have to pop a valium just to walk through the hospital doors on the morning of each of my surgeries – 9 since my ICU stint: 8 orthopedic and 1 for breast cancer, which, weirdly enough, turned out to be the easiest of the medical challenges I’ve dealt with during the past decade.

A few years after my near-fatal illness with my first and last pregnancy, I came upon research that revealed the strong likelihood of having PTSD – posttraumatic stress disorder – if one survived HELLP Syndrome, which I had. I remember balking at the notion that I had some underlying pent up trauma in my system waiting to pounce. Nonsense! I’m fine! was my typical response whenever the topic came up in various discussions regarding preeclampsia, eclampsia and HELLP Syndrome. Optimism has always been a strength of mine, but it has also been a curse that leads to denial and lack of attention to particular issues.

Eventually, however, a few clues made their way into my psyche, the most memorable one happening seven years after that fateful pregnancy-related clusterfuck. Namely, I visited a new doctor and required a blood draw. Despite having informed the receptionist that I was a “tough stick” since surviving D.I.C. and would need their most experienced nurse to draw my blood, they set me up with a woman barely out of high school who had been on the job for all of three days. Not wanting to be perceived as a problem patient, I didn’t protest. That is, until she’d stuck me no less than five times without any success and I burst into tears. Oh, but not just tears. Despite my tendency toward stoicism, I also erupted in an uncontrollable, loud, and messy tirade about medical professionals never listening to patients, poking and prodding them without regard to what they’re going through, not listening, poking, hurting, prodding, hurting more, ignoring, not listening. I even stunned myself as the words were streaming from my mouth, surprised at the ferocity of my outburst.

Well, honey, let me tell you, I’m pretty sure every unsuspecting patient in the waiting area was listening because they couldn’t help but hear me. I only calmed down when the nurse with actual experience moved in and drew my blood with efficiency. I walked out with tears still wet on my face and, once in my car, I proceeded to cry and pound the steering wheel and talk to myself like a madman for another half an hour before I was able to drive myself back home. PTSD? You bet!

So if a simple blood draw could send me into shockwaves like those, imagine how hard it was for me to calmly walk into a hospital for what would involve IV needles, let alone being cut open. Funny thing is, once the IV is in place, I’m fine. The surgeries themselves don’t scare me because I’m under anesthesia. Hell, I don’t even care if the folks in the operating room want to make my inert body dance the Hokey Pokey once I’m under. In fact, I’ve dared them to do so and film it on my iPhone for me. (To date, none have taken me up on my challenge.)

I had never experienced Valium, or any sort of muscle relaxant, until I was getting some dental work done in my early 40s and was a bit squeamish about the removal of my old dental fillings. My dentist prescribed two doses worth of the medication for me and my nerves were as calm as a gentle spring breeze when I walked into his office for the treatment. So when my joints started to fail me and the orthopedic surgeries began, I decided to ask about popping a Valium the morning of each surgery, again, not so much to quell surgery fears as to quell needle fears. (Although no food or liquids is permitted the morning of surgery, you’ll get a pass for a small sip of water to down any necessary medications.) It worked like a charm and I’m certain the hospital personnel found me to be a much more compliant and pleasant patient than I would have been without a little prescription help. This has now become part of my pre-surgical protocol. Surgery alone is anxiety-inducing enough, and if you’ve got some prior hospital experience or other fears that tend to fuel your apprehension, why not take steps to assuage it, right?

There are plenty of other things I do to calm my nerves for the hospital pre-op procedures. I always take my Bose headphones and an eye mask with me. Sitting in the waiting room, I put on calming guided meditations or simple wave sounds and meditate until I’m taken back to the pre-op area to get started.

Even there, I will keep my eyes covered and my ears tuned to the music or meditation, not on what the nurses and docs are saying as they take my blood pressure, get the IV going, and have me sign what feels like the amount of paperwork one would need to take out a mortgage. I always tell the nurse overseeing my pre-op procedures to tap my arm if she needs me to remove my headphones and pay attention to her. They likely enjoy having a quiet meditative patient to better focus on their prep work, so my headphones and iPhone, it seems, provide a bonus to everyone involved.

Now let’s discuss warm blankets. I love them. And hospitals have them. If offered one, I suggest taking it. Some hospitals even have these gizmos that are like reverse vacuum cleaners that pump warm air into a thin mattress-like paper blanket, which stays warm as long as the machine is running. Score! To me, warm blankets are a must. You’ve seen how thin those lovely hospital gowns are, right? Nothing like a backside built-in air conditioner, not to mention loss of dignity involved in wearing one. Also, ever notice how chilled you get when the IV starts pumping fluids into your system? For me though, beyond the obvious physical heat warm blankets provide, they also feel like a nurturing hug to me.

My love of (ok, obsession with) warm hospital blankets likely stems from my interactions with one of the ICU nurses I encountered back in 2000. Although I was a tad crazy at the time – in polite circles this is known as “ICU Psychosis” – Susan reminded me of a nurturing mother who always knew the right thing to say or do to calm me. Beyond her demeanor, Susan also had the habit of bringing me fresh warm blankets at the start of her shift and the end of her shift, her version of hello and good-bye. In the weeks of hallucinations and indescribable pain I experienced, Susan was like a bright light shining amidst the storm of my ICU experience. On the night before I was discharged from the hospital, I made her promise to stop by and see me at the end of her shift with a different patient. I then fell asleep and, not wanting to disturb me given how difficult it was for me to rest while in the ICU, Susan came to say farewell but left without speaking to me. When I awoke a half hour after her shift had ended, I discovered four warm blankets all tucked around my body, complements of Susan. It felt like her way of saying, “You’re safe. All will be well. I love you. Goodbye and good luck.”

As someone who chooses the surgeon over the hospital or the medical practice, I’ve now been a patient at three different hospitals for my various joint replacement surgeries, for a total of eight different hospitals for my various overnight stays. One of them, OrthoColorado, which is in Colorado, duh, took the prize for best check-in and pre-op experience.

Owned by a large orthopedic practice in Golden, OrthoColorado has perfected the check-in experience, starting with the ski lodge-esque lobby boasting a large fireplace and an abundance of gorgeous fresh-cut flowers that I would later learn are actually damn good fakes. There are no mauve walls dripping with bad art. The look is as tasteful as it is calming. This well-thought-out physical environment immediately put me at ease about the surgery that would take place an hour later. (But let’s be honest: Valium was also helping considerably.)

The check-in process was more like sitting with the concierge at a fine hotel to plan activities during my stay. There was no leaning against an ugly institutional counter while a bored person behind a computer asked for my ID without so much as pretending to look up at me. I was led to a private area and invited to sit in a comfy leather chair while running through the requisite paperwork and process. At the conclusion of checking in, I was given a special code that would appear on the large screen in the lobby with any news about my progress throughout my stay, keeping my equally antsy husband in the loop. While I was back in the pre-op area, it would list me as such. Same with my move into the operating room and then to the post-op area before moving to an overnight room. Keeping the loved ones of patients informed is a huge relief for them, while also limiting the number of nervous people interrupting the staff for updates. Win-win!

The piece de resistance came, however, once back in the pre-op area. Yeah, that place where someone was going to stick me with a big fat needle to get my IV fluids started. Before I could launch into my “I’m a really tough stick and I need someone with tons of experience inserting my IV” schtick, I was asked by the nurse if I’d like a foot rub.

A foot rub? Are you serious? Why yes! I’d freaking love a foot rub!

So in came the massage therapist, I kid you not, who gently rubbed my feet and carried on a conversation with me, while that sneaky nurse managed to insert my IV needle without incident. Color me impressed. Since I had earlier shared my fear of needles with the “concierge,” the folks in the pre-op area already knew to set me up with a lidocaine shot to numb the area (much tinier needle) prior to inserting my IV and to have their most experienced nurse do the actual IV stick. Not only that, but given my needle-phobia, they called in the massage therapist. Now that’s anticipating a patient’s needs! It was the complete opposite of my PTSD moment mentioned earlier. When my husband came back to see me in the pre-op area, he found me laughing with a gaggle of medical professionals, all of whom would’ve never known I was a bit of a freak about hospitals.

In addition to foot rubs, another thing you may be offered during the pre-op phase of your joint replacement is an optional anti-nausea patch. If you can tolerate them, I’d suggest a hearty Yes, please! Having been through numerous surgeries by now, I recall having come out of several of my earlier surgeries with the distinct desire to vomit. Ginger ale and crackers were offered in an attempt to quell my upset stomach. However, after I’d been introduced to anti-nausea patches, I discovered it’s much more pleasant to proactively avoid the nausea rather than to deal with it once it hits. Take. The. Patch.

It’s not helpful to be anxious about the mere act of showing up for surgery. So if you’re like me – a bit of a freak about hospitals – I encourage you to take whatever steps are necessary and doctor-approved to calm your nerves prior to and on the day of your joint replacement. Going into surgery with a strong, optimistic, and calm attitude and disposition will help immensely in your recovery. So will foot rubs.

I know how lucky I am to have survived a near-fatal pregnancy 17 years ago. I know that most women who go as far over the edge as I did with eclampsia-turned-HELLP-Syndrome don’t make it out of the ICU alive.

Six weeks and 203 pints of blood after my ordeal began back in 2000, I was discharged from the hospital – a “miracle” by some standards. But there was a long-term price to pay for beating the medical odds and that bill came due about seven years ago.

During all the internal hemorrhaging a decade earlier, a necrotic process had taken root in my major joints – ankles, knees, hips and shoulders – resulting in difficulty walking, chronic pain and several labrum and meniscus surgeries.

I was also diagnosed with an autoimmune illness similar to Rheumatoid Arthritis (Ankylosing Spondylitis) and began giving myself weekly injections of low-dose chemotherapy to keep my inflammation levels under control. I ate my vegetables, drank my kale juice, and limited my pizza intake. (I’ve had a lifelong love affair with dough, tomato sauce and mozzarella.)

But I was in denial – deep, deep denial – about the inevitable deterioration of my major joints when it was determined that pretty much all of the cartilage was gone from my shoulders…and then ankles…and then knees (the hips are still working hard to hold their own). I made it bone-on-bone for several more years. I swam. I did a gentle-but-restorative form of yoga known as Kaiut. (Most of the positions are done sitting or lying on the floor, so Kaiut is perfect for me.)

I assured myself that my Kaiut yoga practice would save me from having to undergo the 5-8 joint replacements that my orthopedic surgeon warned me I’d eventually need. He said I’d know when it was time. I bet him ten bucks that I’d avoid all replacements through yoga. He said he hoped I was right.

Turns out I was wrong.

In January of this year, I was finally able to admit that I did, indeed, need to begin the process of replacing my major joints one by one or else face the rest of my life in pain and, most likely, in a wheelchair. I began with the knees, six weeks apart, this past spring. It was as (temporarily) hellish as I had been warned. But I am convinced that all that Kaiut yoga – while it didn’t allow me to avoid joint replacements – did, in hindsight, help me prepare for them. And that was good enough for me.

Five weeks after my second total knee replacement, I received a text from Jeff, the owner of my favorite yoga studio, who is also my favorite Kaiut instructor. He offered to give me a free private lesson if my husband could get me there. (I was still unable to bend my newest knee enough to drive myself.)

We arrived three days later for that session. To say it was amazing would be an understatement. Jeff walked me through a series of poses, all of them lying on the floor with my feet on the wall. I was shocked at how much I could do even with the limitations of surgery. Two days later, I was back in class on a regular basis.

The sequence of Kaiut poses changes every two days, so I am never quite sure what each class will entail, let alone how much of it I’ll be able to do. But I love being there anyway if only to soak up all the good yoga vibes.

To get on the floor at the beginning of each class, I stack four bolsters against the back wall, sit on them and then slide the rest of the way down. At the end of class, Jeff and someone else hoist me up to standing by my elbows (my shoulders being too deteriorated to be pulled forward by my hands). If there’s a standing pose or a pose done on all fours, I do Legs Up the Wall instead.

Today, sandwiched between my husband and a pal, I heard Jeff give the cue to get on all fours. As I prepared to put my legs up the wall, I began to wonder if I was deluding myself in thinking that I could actually regain full mobility, imagined that I might be headed for a wheelchair regardless of how many joint replacements I get. Almost immediately I heard a very loud, very insistent voice in my head yell, “I REJECT THAT!”

And then I got mad. Mad at my medical circumstances, but madder at my lapse in optimism. And that was the moment I decided to try getting on all fours.

I rolled sideways from the bolster I was sitting on to another bolster as padding for my knees. I wound up diagonally across my mat, my hands on my husband’s mat and my feet on my friend’s mat. The thought of shifting my body and bolster so I was facing forward seemed too difficult, so I stayed put. They didn’t care. They could tell this was something big for me – my first attempt at putting weight on my new knees, now 10 and 16 weeks old. Trembling, I pulled another bolster under my arms and leaned forward, breathing heavily, straining to hold the position, catawampus though it was. My heart raced as if I were sprinting, but I was determined to hold my amended position as long as the others in class were sitting back on their heels.

As soon as Jeff said, “Now come out of the position and stand,” I flopped onto my back as if I’d just finished a marathon, ready to give myself a nice long Legs Up the Wall break. But no sooner did my ass hit the floor than Jeff was over at my side saying, “Nope, I want you standing too, Lauren. You can do this.”

WTF?!

My first three weeks back at yoga class, Jeff had let me do pretty much whatever I wanted, taking breaks as needed and ignoring the poses I couldn’t yet do. Standing poses – I assumed Jeff understood – were off limits given my crappy ankles, but this morning, he decided otherwise.

I’ve been working with Jeff for just over two years now, so he knows my mobility issues well. He asked my husband to help hoist me to standing and had me – and everyone else in class – move right into a pose facing the wall. That got me breathing even harder, my body having atrophied over the previous three months of recovery and heavy pain medications. At times, I couldn’t even keep my hands on the wall, letting them fall at my side while I leaned against the wall with my head (definitely not part of the pose). When we were finally instructed to release the pose, I was exhausted, but in the best of ways.

I hadn’t strained like that in my 2+ years of having a consistent Kaiut yoga practice, and I have to say IT FELT AWESOME! Not because I had strained, but because I had overcome my own mental block. That one yoga class this morning was more powerful than any of the physical therapy sessions I’ve had to date.

While yoga’s goal is typically inner peace, sometimes the goal should be discovering what you’re capable of by being challenged to go beyond your self-created limitations.

Namaste, Jeff. Namas-freakin’-te! Woot woot!

Tag: HELLP

I’m a Freak About Hospitals

“I Reject That!”