Wellness Wednesday: Did I Have a Lethal Disease or Just Rotten Luck?

I am well. For the first time since May 5, 2019, I am not a hospital patient.

A healthy patient

Before our 2019 transatlantic cruise to Europe, I considered myself our doctor’s most boring patient. I was a fitness instructor. Apart from having our daughter nearly 30 years ago, I’d never been hospitalized, and I had none of the diseases that creep in as we age. My husband has not been quite as lucky, but he was cleared to travel.

Off we went on our two-week journey across the pond from Florida to Amsterdam, with one additional roundtrip week from Amsterdam to Norway tacked on. We had booked an apartment in Amsterdam’s canal district for a month to end our trip on solid ground in one of our favorite cities.

Three months in the hospital: May 5 to August 9

Saying that I was a boring patient was simply too tempting for The Fates to let lie, but they did give me a chance to make it.

In the single day we were in Amsterdam, I was felled by a ruptured arterial aneurysm, and my heart stopped as I was wheeled into the OLVG Hospital emergency room. They got me back and quickly sealed the leak, but my body struggled to keep going for nearly six weeks in the ICU, leaving me wasted and weak. It took me another six weeks to recover my ability to move and the strength to survive a flight home. I was transferred to a Florida hospital with the savvy to take over my treatment, the University of Florida’s Shands Hospital, where I was an inpatient for a week before being discharged to return home. Tomorrow is the second anniversary of that wonderful re-entry into our palm-and -lake-laden neighborhood.

But hanging over my head was Amsterdam’s diagnosis: the ruptured aneurysm had been surrounded by other aneurysms, symptoms of an extremely rare vascular disease: segmental arterial mediolysis. According to the Mayo Clinic (Jacksonville FL), SAM carries a mortality rate of 50 percent. If the SAM diagnosis was correct, I’d need to be carefully monitored by all-too-rare specialists for the rest of my life. Although Shands was five hours from home, I needed to remain their patient. Maybe forever.

One-month check up: August, 2019

On our return, Shands identified a pseudo aneurysm near my ER incision and fixed it while I tried not to hyperventilate. God bless the nurse who understood what was going on in my head. She stood right next to me chatting about children and dance lessons, keeping me distracted while the rest of the team worked away.

Four-month check up: November, 2019

This time, there was nothing to see. Apart from the evidence of the clamped tear, my blood vessels looked healthy. No aneurysms. Not even any pseudos.

One-year check up: virtual, 2020

It was out of the question to travel to Shands as the pandemic raged. Instead, I ventured to a local facility for the scan, and Shands had a look. Still healthy. No aneurysms.

Two-year check up: July, 2021

We were fully vaccinated mid-winter, and I scheduled my next checkup at Shands before Florida became ground-zero for the delta variant of the Coronavirus. However, by the time we traveled, cases, transmissions, hospitalizations, and deaths were all soaring. We kept on our masks. We sanitized our hands. We drove.

Shands’ CT scan showed no sign of disease. I do not have the terrible, rare SAM. I had some rotten luck, is all.

Go live your life. Follow up with someone closer to home in a year or two, and we’re here if you need us.

Dr. Thomas Huber, Chief of Vascular Surgery, Shands Hospital, University of Florida Health

Discharged

I will always feel deeply grateful to the staff in Amsterdam and at Shands who carried me through the days, months, and years since May 5, 2019, but it feels darn good to be a civilian again.

This time, however, I am taking nothing for granted. I am working hard every day at being strong, well-nourished, and engaged with life.

To life!

Jane Kelly Amerson Lopez
Jane Kelly Amerson Lopez

Wellness Wednesday: How I celebrated my second anniversary of being alive

As I sipped my first cup of coffee this morning, I checked for the Amsterdam time. It was about two in the afternoon, two years ago to the hour from when my heart stopped on May 5, 2019.

My second anniversary

We’d just crossed the Atlantic on a Holland America cruise ship and should have been at Keukenhof Gardens but my husband had bronchitis, so we had stayed in Amsterdam to pick up medicine when I fainted on the sidewalk.
The EMTs arrived quickly, but my vital signs were within normal range and I told them I felt perfectly fine. Of course I did not feel perfectly fine. I’d had several days of cramping in my abdomen but I had been ignoring it, focused as I was on the next leg of our journey and a reunion with family at the Oslo Opera. “Take us back to the ship,” I commanded.

The ship doctor would not let us back on board unless we signed waivers relieving Holland America of the responsibility for our actions. I was determined, R was sick, and getting back to our room seemed like the only thing to do. We signed the waivers and got to the room, but when R returned with lunch 15 minutes later I was sprawled on the bed, semi conscious. This time, the decision was made for us — the ship doctor and his staff, along with a new set of EMTs, evacuated us off the ship within minutes. Although I understand I must have been unconscious, I remember someone saying as I was rolled into the ER at OLVG Hospital, “We are starting CPR.”

Imagine my poor husband watching this drama unfold, sitting in the ER lounge with our luggage and still very, very sick himself.

Surviving

The ER team identified a ruptured arterial aneurysm in my abdomen as the reason for my condition, and they quickly performed a clamping procedure that stopped the leak. However, the amount of blood in my abdomen had already begun to wreak havoc with my organs, and I spent the next six weeks in the ICU as my body fought off failure.

Our daughter and my sister flew to be at my husband’s side through these very long and dark weeks, and they were supported by the remarkably compassionate OLVG doctors and nurses and the extended family of another ICU patient. These dear people became our friends forever — I just mailed them some gifts.

Recovering

When I was discharged to the hospital’s gastroenterology unit, I had lost 30% of my bodyweight and the ability to move. The doctors told me that I might not have made it at all had I not been strong, the result of teaching water exercise to fellow retirees in Florida. The lifetime exercise habit gave my body the muscle memory it needed as I slowly recovered my ability to move, then to stand, then to walk.

R and I flew to Florida at the end of July, where the University of Florida Shands Hospital took over my care and confirmed that I was strong enough to continue my recovery as an outpatient. I shuffled down my neighborhood sidewalk using a walker and then a cane, and regained my ability to walk unassisted through physical therapy. We even joined a gym, and then, just weeks before my first anniversary, the pandemic hit.

Living

Quarantine did not stop me. My walks got longer and faster. The hand weights came out from the closet. I worked out on Zoom with my sister’s Colorado fitness instructor. We bought a stationary bike. I swam in our community pool and jogged in the ocean.

I have regained, maybe even surpassed, my May 5, 2019 strength and resilience. My next Shands checkup is in July, and we’re expecting me to be discharged.

Gratitude

I really wasn’t sure how I was going to celebrate this day. But then, I got a surprise call from Marsha, who was the first person to entrust me with being her personal trainer in the water. Marsha had just finished a water exercise class with an instructor who was filled with joy and enthusiasm, the feeling that I hoped to impart with every class when I was teaching. The repetition of exercises we’d worked on together, the freedom of moving in water and connecting with others — well, she simply had to call me.

As we caught up with each others lives, I was filled with gratitude for Marsha and all my former students who helped me to be strong enough to survive in 2019. We have made it through this awful pandemic year and will see each other over breakfast or in a pool when conditions permit. We are in each other’s lives, and that is a wonderful thing.

Indeed, I am reminded, today and every day, that life is a wonderful thing.

Travel Tuesday: Experience Skating on Dutch Canals

Trapped between the winter storm and high pressure to its east, South Florida stood out like a chili pepper on nationwide temperature maps Monday-a red hot poker against the cooler hues of blues and purples.

Kimberly Miller, The Palm Beach Post

Skating is back in holland

Anne’s skating video

While we are basking in beach weather, a polar vortex has dripped down on much of the United States and Europe, sending temperatures plunging. However, while others shiver indoors, the Dutch have rejoiced in the return to skating on canals.

My friend Anne, one of the dear nurses who cared for me as I recovered from a near-fatal illness in Amsterdam, wrote me to share the joy of recovering this national winter sport.

For the first time in more than 10 years we really had a winter!!! I was skating today on the canal and thought of you. I wanted you to taste a little bit of our Dutch culture. 

Anne Berkhout, OLVG nurse

Ice is not good everywhere

Anne’s klunen photo

When ice skating is your national sport, it stands to reason that the Dutch would have terms for all the related activities.

This picture of us crawling on our knees is called “klunen” in Dutch. If the ice is too weak, you have to go by foot or knee so that you don’t fall through the ice.

Anne Berkhout, OLVG nurse

But when you DO fall through the ice, you become a Twitter sensation under the hashtag “Ice is not good everywhere.”

Perhaps we’ll skate together

Maybe someday you can see this with your own eyes and skate with us!!

Anne Berkhout, OLVG nurse

My ice skates, which I wore for many winters in upstate New York, are in my Florida bedroom closet, so who knows? It’s Anne’s passion for life that I treasure. So many enthusiastic, tall, smiling people are certainly something I’d love to experience again.

However, I also hope that Anne can someday join us around our lanai fire pit under the palm trees.

Weekend Wildcard: How to Walk With Angels

There are angels who never were people, and then there are angels that are people whom God has chosen to deliver a message or complete a task here on earth.

Rabbi Marc Gelman

In 2019, doctors and nurses in Amsterdam’s OLVH Hospital saved my life, and the hospital chapel inspired my recovery with soul-catching music when all I could do was barely sit upright in a wheelchair.

This Valentine’s Day, I walked four miles listening to that music by Tom Lowenthal and thanking all the angels that brought me back into life.

  • The ER nurse who I heard say she was starting CPR as I was rolled into OLVG. My heart had stopped. I cannot have heard her. I guess angels have special powers to reach the dead.
  • The radiology doc who knew how to reach and seal the abdominal artery rupture.
  • The recovery room nurse who realized that my body was failing.
  • The ICU doctors and nurses that refused to let me give up for six long weeks.
  • The gastroenterology team on 7A who believed I would walk onto a plane six weeks later.
  • The doctors and nurses at the University of Florida Shands Hospital who pronounced me recovered.
  • The physical therapist who knew I would jog again.
  • The nurse practitioner who taught me the pelvic floor exercises and gave me back my confidence

Say yes to life. Say yes to miracles.

Rabbi Marc Gelman

National Nurses’ Day: My Super Heros

On May 6 in America, we celebrate National Nurses Day. We are early — in Holland and elsewhere around the globe, Nurses’ Day will be celebrated on May 12. I am considering May 6 to be just the beginning of a week of honoring the women and men who carried me — literally and figuratively — out of harm’s way and into the beaming light of full health at OLVG – Oost, a wonderful hospital in Amsterdam.

I don’t have pictures of my ICU caregivers who brought me out of danger after a ruptured arterial artery – and pneumonia, kidney failure, pulmonary embolisms — nearly took me down. I know I was watched, lifted, monitored, and cared for intensely for six weeks. I know that, despite being marooned in a foreign country with me gravely ill, my husband, daughter, and sister were informed, cared for, counseled, and supported, all in excellent English and with great empathy. I also have the words of my ICU nurses which they inscribed in a diary that it is OLVG’s practice to give patients upon their release. Only later did I learn that this book, and the follow up visits an ICU emissary made to my bedside, were part of helping patients to surmount the psychological trauma that can linger long after an ICU stay.

You lost a lot of muscle strength in the last three weeks, but you work really hard to get it back. Keep up the good work!

Rose [May 27, finally off a respirator]

Today you got a pic line. I was there with you and you were scared so I held your hand. Your husband and daughter are here every day. They remain strong.

Emma.

In early June, the ICU was where I began to learn how to move again, and where three wonderful nurses took me on an adventure: getting in a (seated) shower. Ahhh, to feel that water after all those weeks!

When my medical condition stabilized and I was discharged to continue improving in another part of OLVG, was afraid to leave my caregivers. I’d come to count on having my own nurse. On 7A, they told me, I would have to share a nurse with other patients, pushing a call button if I needed help. Oh, boy, the ICU nurses had me practice that move for a couple of weeks. I had grown so weak that it took lots of repetitions to conquer that skill. It’s a good thing that I couldn’t see too far down the road, where myriad physical challenges waited. Sometimes, it’s better just to keep your head down and do what you can do, especially when you cannot even put one foot in front of the other.

But when I got to the Gastroenterology Unit on 7A, I was in the hands of amazing staff once again.

Tess

Andreas was on the late shift that first night when my call button fell out of my reach and my kind roommate summoned him; he helped me change into my own PJs and out of the blue hospital gown. “Blue isn’t your color!”

Mariella

My nurse Joke (pronounced Yo-kuh) — whose garden was her joy — told me to learn Dutch. Guusje printed out the numbers one to ten so I could count my reps in PT workouts.

Houda showed me pictures of her sister’s elaborate Moroccan wedding and told me about the henna designs on her hands. Noeska, Fleur, Hannah and Tess were my cheerleaders as I slowly grew stronger. Stacey was quick with wit, so I called her SmartAss (a high compliment, from one SA to another). Truida was patient and kind. Mariella, a serious tennis player, was a key supporter of my Physiotherapy sessions. Jaimey could lift me out of bed in one move, my Prince Charming.

I asked if they’d add to my ICU diary as my days at OLVG came to an end. It was like having a yearbook through which to remember. Here are a couple of the lovely well-wishes.

What a difference I have seen from someone barely able to lift a hand to someone who gets out of bed by herself. I’m super proud of you.

Fleur

No words can express how proud I am of you and your progress. Seeing you walk for the first time made me happy. I won’t forget you.

Tess
Fleur, Joke

Anne was a consistent source of reassurance throughout my six weeks on 7A, and became a true friend who I am in touch with (and who reads these posts so I know she’ll share this piece with her colleagues):

This experience, however horrible, will make you a stronger person for the rest of your life! It was a privilege to be able to witness part of your rehabilitation. Don’t set too high demands for yourself. You will GET THERE! I know you will!

Anne
Karen, on my Pelvic Floor Therapy graduation day!

I sent thirty-nine pairs of kooky palm tree socks to OLVG last fall as a thank-you gift.

American nurses held me up when I was able to fly back to the States at the end of July The nurses at University of Floridás Shands Hospital supported me for the week I was in Gainesville before coming home. Karen, the nurse practitioner in Palm Beach County who gave me my pelvic muscles back at the end of 2019, deserves a special recognition!

These amazing men and women are just some of the reason that I sit here today having fully recovered not just my health, but also my strength, along with treasuring the joy of life.

To think I could have missed all this!

Another Graduation Celebration

A catheter is a wonderful thing. It quietly takes care of business while you are working on other stuff in the ICU like breathing on your own and bending your fingers. This goes on for six weeks. You can now squeeze a hand.

You don’t even know the catheter is there as you gain strength and graduate to another unit in the hospital. The days are long and the nights are longer. Your one source of entertainment is drinking iced water. You drink a lot. The nurses think you pee a lot. One nurse in particular — the one with the short, dark hair and glasses who scared you at first with her stern admonitions that you learn to speak Dutch, a language that eludes easy mimicry — is even a little worried about how much you pee. You cannot remember how often you went to the bathroom in the long-ago before all this.

The nurse that used to scare you lifts you out of bed one day and hands you the bag of your urine, but she calls it your Pee Purse. You laugh, say dank u wel, and tell her about the Amsterdam Purse Museum. You both agree that the museum needs to add a Pee Purse display.

Although you have now been helped by thirty nurses or more, it is Joke, pronounced Yúh-kah, the nurse who used to scare you, who says it is time to remove the catheter. This sounds like a terrible idea. You have managed to regain some control of your bowel, but the bladder is a whole other animal. You are afraid.

Joke tells you that you can do this. Anne tells you that you can do this. Tess, too, and Fleur and all the rest. Joke removes the catheter just like that. It is nothing.

The nurses — Joke and Anne and Tess and Fleur and all the rest — outfit you with extra layers of diapers. Slowly, you tune in to your inner body. The idea is, apparently, that you will now pee in a bedpan.

There are some problems with this plan.

Number One: Metal bedpans must have been fashioned in the Victorian era when whatever happened “down there” something to be punished. They are cold. They are hard. They are not shaped to fit.

Number Two: When you think pee might be coming and when it actually does are two completely different things. Sometimes, it happens before a nurse can haul your butt onto a bedpan. Sometimes, it happens as the hauling is underway. And, occasionally, it happens when you and the cold, hard bedpan are one.

Joke is right: You can do this. You make progress. Something called a Pee Chair is produced. If you time it right, which doesn’t happen very often, the staff can get you out of bed and on the chair where your bladder and your bowels take charge.

More progress. You achieve your physiotherapy goal — lifting your hips off the bed — and are promoted to pull-up diapers. You are thrilled. Your physiotherapist, Gemma, has another goal — walking. That happens, too. You and your snazzy blue Rollator wheels travel all the way to the bathroom outside the door to your room. There’s an actual toilet there. Another thrill.

And somehow, everything comes together and you are ready to fly home. Joke gives you a photograph of sweet peas from her garden. You and your husband and your Depends fly to Shands Hospital at the University of Florida, where the physical therapist recommends looking into Pelvic Floor Therapy, eventually. For now, she gives you a cane. You begin with laps around the floor.

The laps get longer when you get home. You rent a red Rollator so you can sit down when you get tired. You sit less and less and walk more and more. You turn in the Rollator.

You begin outpatient Physical Therapy. You walk on the treadmill and do a zillion squats. You put aside the cane. You graduate from Physical Therapy on Halloween, wearing your daughter’s cap and gown.

You’re still wearing Depends, the ones they advertise on Wheel of Fortune. You think you can do better. You remember Joke and Anne and Tess and Jamie. You buy super enormous pads but pads nonetheless — Poise, they are called — and inquire about Pelvic Floor Therapy. Your hairdresser — Nikki, a few years younger than you — wants to know all about it because her doctor suggested it. You are both curious about electronics up in there. Hmmm.

The nurse practitioner, Karen, is warm and engaging. The electronics turn out to be less fun than they sound and very useful. You learn that a kegel is best done while imagining holding in gas. We’ve all done that. You can do this. You begin.

The app reminds you to do your exercises four times a day. You comply. You have discovered that not everyone is compliant. But not everyone is working on a pad-free life. Your daughter catches you practicing while you’re having an informal conversation and watching TV. Learn, I tell her.

Eight weeks later, the strength of your pelvic floor has almost doubled. Your uterus and bladder and colon are well-supported and will not give in to gravity. The nurse practitioner, Karen, says that you only have to continue doing kegels “if you want not to leak.” You want not to do that.

So, you graduate from Pelvic Floor Therapy …

… throw out the empty bag of Poise …

… and face forward.

Things I Am Thankful For

They say that gratitude is a year-round practice, and that we can be thankful on days other than Thanksgiving. Every time I stand up, I am grateful. Every stair I climb, every tangerine I peel, every egg I beat, every stroke I swim — grateful. When I roll over in bed, when I drive alone in my car, when I take another medicine off the list — thankful.

And here are some of the specific people, places, and things that have helped get me here, eight months after I almost missed the whole thing.

Our sweet lady guesthouse OLVG and every other doctor, nurse, physical therapist, and other helpers

Graduating from PT at FYZICAL on Halloween
The nurses of OLVG 7A wearing their palm tree socks
Dr. Emo and his “little American people”
Climbing the stairs to V’s apartment!
My OLVG physiotherapists in their palm tree socks!

Family

To family in Norway, I’m so sorry that my illness caused us to miss our date at the Oslo Opera! To extended family in America, your electronic cards-and-letters have sustained me.

And here’s to my immediate folks:

Ray, me, Christian, Victoria
Me, sister Susan, brother-in-law Michael, Ray

friends

To friends who sent prayers, support, and heartfelt messages across Facebook as our daughter let people know what had happened: thank you! You pulled this chatty, silly, warrior woman through.

To my former exercise students who cheered me on for all those months in Amsterdam and have treated me to breakfast and more cheers now that I’m back, thank you!

Boynton Beach friends

To our neighbors, who looked out for our house while we were away, lent support when we got home, and gave me thumbs up as I worked my way up from walker to cane to just me: thank you!

And to my writer friends, cheers for all our success!

LouAnn, Al, Marcie, me at Al’s MURDER AT THE BUTCHER’S

Dog Support & support dogs

To Pancho, V’s dog, who saw me go from pokey around the ‘hood to mile-charging along the beach: thank you! To Levi, who lifted my spirits with his story: thank you!

home

christmas

Renewal. Reflection. Recollection. This baby is now the amazing 27 year-old woman who rescued us in Amsterdam.

On Christmas Eve, Victoria and Christian will be here to enjoy the dinner I grew up with: tacos, my mother’s re-invention of Venezuelan hallacas.

In Amsterdam, they told me I had two guardian angels on my shoulder. My Muslim roommates told me that we each have five guardian angels: one to the right, one to the left, one behind, one in front, and one over our head. So, maybe there’s a reason the ladies in the Milan pensione gave me this little angel at Christmas in 1959.

SO HERE’S TO A BRAND NEW YEAR!

Community, Antidote to Loneliness

My parents’ calling card

Long after my father retired from the Foreign Service, my mother revealed that each time we changed Foreign Service posts she experienced what she called “the blues:” a six-month period of depression that she stoically endured, knowing that it would evaporate as she sunk her roots into the new environment. As she learned her way around a new house, with new staff, in a new city, Mom became a part of the new Embassy community and met the other FS wives through State Department protocols like “making calls” on established senior wives. Pretty soon, she was at home again.

We need connections. And, from what I’ve been reading, the saturation of digital connecting is scant cover for what some are calling an epidemic of loneliness and its negative physical, psychological, and life-expectancy impacts.

In his recent Palm Beach Post article, How to avoid America’s epidemic of ‘loneliness’, Steve Dorfman (@stevedorfmanpbp) quotes former U.S. Surgeon General Dr. Vivek Murthy: “The increased mortality associated with loneliness is equal to the increased mortality we see with smoking 15 cigarettes a day,” Murthy told CBS News in February. “It’s in fact greater than the mortality associated with obesity.”

Boynton Beach’s Valencia Pointe Book Group and Fitness Committee leaders

As a Florida retiree, I understand that I am now in a group in which social isolation is a problem. What I found surprising in Dorfman’s piece was that 18-22 year-olds suffer from loneliness at nearly the same rate as the elderly. We often seek out face-to-face time with people — exercise classes, volunteer work, mah-jongg, book groups — while the younger demographic sit alone, staring at their smartphones with the hope of being “liked,” but more often being criticized, or worse, by the digital universe.

I was delighted to speak at the Valencia Pointe Book Group Annual Luncheon this spring

I give “community” as one big reason for my survival and recovery from a serious illness in Amsterdam earlier this year. I lay in a single bed for three months but rarely felt alone.

The excellence and compassion of the medical staff at OLVG ER saved my life in May. During the weeks of medical whack-a-mole, the ICU doctors and nurses were dedicated supporters. When I graduated from the ICU and moved to another hospital unit, I received this wonderful gift: a daybook containing encouraging messages like this from my nurses.

My husband, daughter and sister surrounded me with loving during my long weeks in the ICU, and they were looked after by both the nursing staff (“Get out of here and have some fun!”) and by the family of my Turkish roommate. He has recovered very well and we have a standing invitation to stay with them in Amsterdam!

Our daughter and my sister were my husband’s saviors during my weeks in the ICU. And the staff of 7A became both of our community after Victoria and Susie had to return to the States during my weeks of recovery. You can see how I didn’t feel alone in the care of these warm men and women:

I have stayed in touch with Anne, a remarkable nurse, and my doctor, Emo

And throughout my long stay in Amsterdam, I was buoyed by well-wishes from family and friends, thanks to my daughter’s diligent correspondence while I was really sick. Water exercise students in Boynton Beach were frequent correspondents, including this group:

The water class at Majestic Isles

Sometimes, digital connections can save your life! And, as one correspondent said, “On the upside, you now have a great new story for your blog and memoirs.” True that, Linda!

Dorfman says that Americans are not alone in feeling alone: “There is now an Australian Coalition to End Loneliness, Denmark has created a National Movement Against Loneliness and Great Britain appointed its first Minister of Loneliness in 2018.” I know: that last title just begs a Monty Python response, but, still …