64 or More

Close your eyes and imagine a one-gallon milk jug. Then imagine eight of those lined up in a row. That’s 64 pints, or 66 ¾ pounds of liquid. In my case, the liquid was blood. Even nurses register a bit of shock when I tell them that’s how much blood I needed to survive.

But I’m getting ahead of myself. On June 29, 2017, I was operating my motorcycle close to home when I crossed the middle line (avoiding something in the road), only to be met by an SUV coming down around the corner of a very long hill. Let’s just say I lost that game of chicken. The motorcycle and the SUV were totaled, and so was I.

Before I was med-flighted to Mass General, the flight crew told my husband to kiss me (even though I was unconscious) because in all probability, I would be dead by the time he drove down to Boston; there wasn’t enough room on the med-flight for him to ride with me.

Upon arrival I immediately underwent 11 hours of surgery, mostly to my abdomen, where they played whack-a-mole for most of those hours, as well as shoring up both my broken clavicles, both my broken pelvises, cracked sacrum, major trauma to my inner left thigh, and compartment syndrome down both sides of my entire left leg. I also had blood on the brain, but thankfully, I did not need surgery for that! Let’s just say that if my body had been a house, it never would have passed inspection by a plumber (and never will). My family was told I had a 5-10% chance of survival, and for the next week, my medical team’s first decision was whether or not to pull the plug. I was immediately put into a semi-coma. Full time dialysis as well, as they had to shut down my kidneys for the whack-a-mole game.

An editorial: I had on FULL gear – wouldn’t have survived without it. Wear your gear, people – I shake my head at the folks with shorts and flip-flops, not wearing a helmet where it is optional (I live in the Live Free or Die state, and many folks opt for that last option because they didn’t wear their helmet, which is attached to the back of their bike to put on when they cross into any of our bordering states); but I digress.

I don’t remember anything in the SICU until I was woken up one month and 33 operations later, thus the 8 gallons of blood. I was intubated and trached and had lost so much muscle mass that I could barely raise my hands. Luckily, I am a life-long learner of ASL and was able to teach my nursing staff the alphabet and basic signs to communicate instead of playing 20 questions or blinking my eyes in Morse Code. At that point, I still had my left leg, as my team decided that it was not life-threatening; they needed to concentrate on more pressing medical issues. My dressing changes took three hours each time. My routine for the next month was three hours of dressing changes then eight hours of sleep. Rinse and repeat. During that time, they found a Stage 4 infection on my tailbone – that was the most painful.

After a total of 2 months in SICU, I was moved to a regular ward for two weeks, then to Spaulding Rehabilitation Acute Care Hospital in Cambridge. I was there for seven months. When I left, I could eat limited solid foods, sit in a wheelchair for an hour or so, and transfer using a board. I was fitted with a full-length, shoe-integrated AFO. I had every kind of therapy one could imagine and I slowly began rebuilding all that muscle. The most exhausting part was dialysis 3 times a week on top of PT/OT, which insurance required three hours of every single day.

After seven months at Spaulding, I was forced to go to a long-term care facility, also known as a nursing home. After 2 ½ months, I was allowed to go home. Props to the PT/OT company who rented out space there – they taught me everything I needed to do to be successful at home – fantastic people.

Got home and pulled a rookie mistake – forgot to lock the wheelchair – fell – 2 more weeks at Mass General for that stunt – but it never happened again. So in all, a year before I was home full time. Still had my leg, still on dialysis, still needed lots of help.

The one thing I did have was time, and I used it to get well. Didn’t do it alone – besides my family, friends and colleagues came out of the woodwork to help. It wasn’t a village, it was a city, and I still don’t have words to thank them adequately.

In August of 2018 I’d had enough, my leg was not improving, and I had an elective LBKA. Best decision ever! Gave me my life back. By November, those shut-down kidneys had healed enough for me to stop dialysis. Of all my medical issues, this one was the biggest game-changer. All I can say is that if you are willing and able, volunteer to donate a kidney. Who knows, it could be given to me, as I am on the transplant list, and 15 hours of dialysis a week is a serious set back to anyone’s quality of life.

Since then I have steadily improved. Although I will always walk with cuff crutches, I consider myself healthy, independent, and happy. I must credit said family and friends, but also my Certified Peer Visitor from the Amputee Coalition, and my tribe, Adaptively Abled. I’ll try anything once. So far, I have embraced glamping, sit-skiing, swimming, cooking, and hiking. Next on my list is golfing and surfing. Getting better – physically as well as emotionally – is hard work, but it’s worth it. Ride the wave and get the support you need.

A word about emotional well-being – this is just as important as physical well-being. For me, the most emotionally difficult part of my journey was giving up a 32 year teaching career. I so miss those high school kids! Yes, it was a difficult decision, but then the hard work was to accept that decision and move on.

My advice? (Take it or leave it.) Work on yourself every day – and if that means a day off in bed to recharge, so be it. When people offer to help, say “yes” and “thank you.” Find your passion (mine is volunteering for Red Cross Blood Drives) and re-invent your new self. Expect setbacks and learn from them. My recovery took well over a year after I came home.Actually, I think we are in recovery for the rest of our lives. I learned that I need to be proactive about my well-being and that I am responsible for my own happiness. My happiness this fall will be riding my Berkelbikepro from RAD-Innovations, which I was able to purchase with my grant from the Challenged Athletes Foundation. I live in New England, so I’m expecting to bike through some jaw-dropping fall foliage. Life is good – different – but good.

If you are a medical geek with a strong stomach, you can read about my medical issues in the New England Journal of Medicine (does that make me famous or infamous?) and read Case # 2019-39. It’s twenty pages and not for the faint of heart, but it is interesting. Besides the 8 gallons of blood, the only other statistic that blew me away is that 1,000 people from Mass General who were responsible for keeping me alive. And if you do read it, please know that I was heavily medicated when they interviewed me for it; I don’t even remember being interviewed. You will understand what I mean when read it :-)!

I’m now 61 years old. My ultimate goal is to get some of the years back that my accident took from me. If you see me on the slopes, on the rail trail, taking a hike, or swimming in any body of water – stop and say hello. Tell me your story. I want to hear it.

And remember: You don’t know how much strength you have until you are called upon to use it.