Back Home in St. Paul

Hello, all!

It’s Friday afternoon, and I thought it would be a good time to update my Caring Bridge site since we hadn’t written anything for a while. During the past three months, my heart has been quiet, and Noelle (my new ICD) has enjoyed a slow and uneventful transition in taking over for Fiona (my old ICD). By the way, did you know that some people take their old heart devices and turn them into things like belt buckles, brooches, and wall hangings? Go figure. My Fiona now resides in the back of my sock drawer, along with a few other treasures.

Stephanie and I spent two and a half wonderful months in San Diego this winter, where we rented a condo on Mission Beach. We started our personal rehab/boot camp program right away, walking on the boardwalk along the beach every day and doing some light strength training in our living room. Stephanie also played pickle ball regularly and explored the city on her new electric bicycle. After my previous events, we had changed our diet significantly, but now we decided to focus exclusively on a whole foods, plant-based diet. We spent many hours looking for new recipes, shopping for fresh foods, and cooking many new dishes along with some old favorites. In the late afternoons, we always paused to enjoy the sunset, either as we sat on our balcony overlooking the ocean or as we walked on the beach. It was a time of day to be thankful for the beauty of nature, for one another, for friends and family, and for good health.

Late in January, I was able to see an excellent electrophysiologist at the University of California San Diego Medical Center, and I found out there was a spot for me in the Dean Ornish Intensive Cardiac Rehabilitation Program (https://www.ornish.com/undo-it/). I had done cardiac rehab after my first event in 2016, but I did the rehab on my own after the second event in 2018. I was eager to participate in the Ornish program because its goal is to prevent and reverse heart disease and type 2 diabetes by focusing on four main areas:

  • a whole foods, plant-based diet (low in fat and refined carbohydrates)
  • stress management techniques (including yoga and meditation)
  • moderate exercise (such as walking, strength training, etc.)
  • social support and community

In some ways, I wasn’t a perfect fit for this program because I don’t have the more common heart disease issues, such as coronary artery disease, heart attack, heart failure, etc. Rather, I have electrical problems with my heart that cause ventricular fibrillation and cardiac arrest. The doctors still don’t know what causes my arrhythmia, but I thought it couldn’t hurt to see whether this program could be effective for me. After the first session, I knew that it would be transformative for me. To be honest, it makes me nervous to use the word transformative because we are only three months into this lifestyle change, but we are feeling strong in body and clear and calm in mind. However, bear in mind that it remains to be seen whether the program will have any impact on my arrhythmia.

Let me tell you a little bit more about the program. My cohort of about 15 participants met two days a week for four and a half hours, which is about double the amount of most cardiac rehab programs. We spent the first hour and a half working out on the various exercise machines while wearing heart monitors so the nurse could keep an eye on vital signs. The exercise physiologists – all young, fun, and enthusiastic – would circulate around the room, checking blood pressures and offering advice and encouragement to the participants. We also had time to talk with one another as we walked on the treadmills, rode the bikes, did the ellipticals, and engaged in strength training. The next hour was stress management, where we practiced meditation and chair/floor yoga. Some people had done yoga before, but spending an hour at a time each day in meditation and yoga was new for most of us. The next hour was everyone’s favorite – lunch. In addition to the staff offices and the exercise room, the program space included a full-sized kitchen where our chef and nutrition coordinator cooked amazing plant-based meals for us, including falafels, quinoa burgers, smoky bean tacos, pasta with white sauce, chickpea and potato curry, and many more. During the lunch hour, family members could join in, so Stephanie was able to meet the other participants and their families, as well as have lunch and listen to the nutrition lectures while we were eating. After lunch, the program ended with an hour of group support, led by two facilitators. I wasn’t sure what to expect from this part of the program, but it turned out to be just as helpful as the other three areas. It was a safe space where people could feel free to be vulnerable as they talked about what had happened to them and what they were experiencing as the program progressed. Even though we only made it through four weeks of the nine-week program, I feel very connected to all the participants and staff in a way that surprises me. I have had a lot of amazing support from Stephanie, my family, and friends, but there is something helpful and rich and wonderful about being able to talk with others who have experienced similar health crises of a critical nature and who are working hard to make significant lifestyle changes.

When March arrived, we were becoming more and more concerned about the coronavirus news. At first, we thought we would stay in California and ride out the storm there, so we went to the store and bought a lot of groceries (and fortunately, toilet paper). However, just a few days later, the news became even worse and I woke up on Friday, March 13 with the clear feeling that we needed to go home. It took us all day and the next morning to pack, and fortunately Stephanie is a jenga master and thus was able to get everything in the car. We were nervous about the trip home since we would be driving through many remote areas with fewer hospitals in case of heart issues. We also didn’t want to catch the virus. As a result, we brought all of our own food for the trip home and had picnics on the hood of the car, and we stopped otherwise just for gas for the car, restrooms for us, and hotels for sleep.

However, as we passed through Utah, we decided to take brief trips into the four national parks close to our route home: Bryce Canyon, Zion, Arches, and Canyonlands. The beautiful natural features in these parks soothed our nervous souls and the hikes in each were an extension of our beach boot camp. Fortunate with good weather and little traffic, we arrived home to a quiet and deserted St. Paul on St. Patrick’s Day.

So, here we are, sheltering in place and doing our best to keep our spirits up and stay in touch with our families and friends. It strikes me that I have similar feelings about cardiac events and the coronavirus. Both seem to lurk in a threatening way with the power to strike when least expected and the ability to cause deep fear and anxiety in all of us. I often lie awake at night and read medical articles about arrhythmia and news articles about the coronavirus. Bad idea. I worry for our family and friends. I worry about all the people who are sick, both with heart issues and with the coronavirus. I worry about how people will pay for their medical bills. I worry about what people who can’t work will do when they run out of money. My worries are many, seemingly endless, most of them about things that are far beyond my control.

What to do? When fear threatens to overcome me, I find that beauty is one of the things that saves me. I listened to Oprah’s introduction to her new meditation series with Deepak Chopra the other day, and Oprah quoted Maya Angelou, saying: “Hope and fear cannot occupy the same space. Invite one to stay.” I love that sentiment and find it to be true. But even more, for me, I would say that “beauty and fear cannot occupy the same space.” I often have trouble sleeping at night because two of my cardiac events occurred then, and it’s easy to start remembering what happened and then thinking it could happen again. To be honest, I can’t always make that fear go away, but one of the things that helps me is to put on my headphones and listen to beautiful music. I love Bobby McFerrin’s version of the 23rd Psalm, Morten Lauridsen’s “O Magnum Mysterium,” hymns by the St. Olaf Choir, among other things. I also love reading poetry, looking at paintings and photos, and being out in nature. All of these things represent beauty for me, and in the presence of that, my fear recedes and I regain my sense of balance and perspective. In beauty, I also rediscover my sense of the sacred.

In addition to seeking out beauty, I can reduce my fear and anxiety by focusing on other things I can control, such as keeping close contact with my family and friends, exercising daily, making healthy meals, and meditating. These last four activities have been part of my life for a while now, but they came into sharper focus during cardiac rehab since they are the four pillars on which the program is based. This post is the last one I will make on this Caring Bridge site for now, but in the days ahead, I plan to write on my blog about each of these five strategies as a way of documenting this time of the coronavirus and my cardiac rehab. You will find the blog here: nancyaarsvold.com/blog

I want to reiterate my thanks to all of you who have supported us in the past few months via email, comments on Caring Bridge, phone calls, visits in Seattle, and visits in San Diego. You give us strength, love, laughter, and so much more.

Much love from Nancy & Stephanie


Gina H. | Apr 11, 2020
Stephanie and Nancy:
It is great to hear an update from you. Nancy, your rehab program sounded very beneficial and I‘m glad you have had a couple of enjoyable months near the beach. Happy Easter to you both.

Ragnhild J. | Apr 7, 2020
Thank you, Nancy, for sharing. I am happy for you that you are safely back home. What a journey the two of you have made in these months! Warm greetings from Trondheim 🙂  

Sveinung S. | Apr 6, 2020
Thank you for this beautiful and inspiring report!

Kris D. | Apr 4, 2020
Thank you, love.

Shirley F. | Apr 4, 2020
You are a rock, my dear, and an inspiration. I am glad you were able to make some side trips along your way back home and hope you find joy and peace now that you’re there. Waiting now for the best time to make the car-trip home too.

Colleen A. | Apr 4, 2020
Thank you for posting, Nancy! I loved hearing this and am so thankful you are in a good spot right now. Your self care is inspiring. Keep up the good work! Love you!

Heather C. | Apr 4, 2020
Yay Whole Foods plant based diet! I love Dr Ornish and find his work so inspiring. It sounds like you all have had quite an adventure to get home, and I’m glad you made it safely! Be strong and healthy!

Shelley C. | Apr 4, 2020
Wow that was really inspirational! You gave me lots of ideas! So grateful you and Stephanie are doing so well and made the most of your situation!❤️Stay healthy and go with HOPE!

Gloria B. | Apr 4, 2020
Nancy, your words were just what I needed to read this morning. Not only am I thrilled that you and Steph have made it home, are healthy, and are walking this new path together, but I’m calmed by this message of peace, beauty, and hope in these uncertain times. I know we’ve never met, but I feel drawn to your open, thoughtful words. God bless you both. Stay well.

Robert E. | Apr 4, 2020
Welcome home! You’ve had quite a adventure. Good luck for your recovery – it sounds like a great program.

Judith T. | Apr 4, 2020
Beautifully written, Nancy! Thanks for the inspiration and welcome home.

Connie F. | Apr 4, 2020
So good to hear from you, Nancy, and to know you are back in St. Paul. What a remarkable journey you’ve taken. Be well.

Patricia S. | Apr 4, 2020
How wonderful to have you safely back home! Your journal entry touched me. I felt love in every sentence and look forward to a mutual hug when it is safe to do so. Peace, love and blessings to you two!

Joan H. | Apr 4, 2020
Beautiful beyond words. You are amazing Nancy & Stephanie! And you even included the link to Bobby McFerrin! Welcome home. Now it’s time for me to meditate.

Marcia S.-S. |Apr 4, 2020
What a remarkable journey you’re on. Thank you for sharing so much of it with the rest of us. I’m happy to hear you’re safe and back at home in St. Paul. Sending hugs and love to you and Stephanie.

Roberta L. | Apr 4, 2020
Welcome home. Sending love 💕 your way!

Marsha F. | Apr 4, 2020
Thanks so much, Nancy, for this amazing update. The way you are handling life right now has so many good suggestions for ALL of us during this time of great uncertainty. I will come back to your newsy post several times because it is so helpful to me, too. Hey, Steffen Foss, whoever you are, do you think we are related?

Steffen F. | Apr 3, 2020
Nancy, so happy to hear you are home and doing well. I think of you and Steph often among the many friends I wonder about in this strange time and hope you are both hanging in there. Sending you both hugs and good spirit as we trudge through these next several months.

All is Well

CaringBridge journal entry by Stephanie Fay — 8/9/2016

icu-aug9-2

Nancy slept off and on overnight after a sweet, laughter filled day. Sounds like the plan today is to have two MRIs — one of her heart and the other of her brain. Then we’ll go from there. Still no clear answers about why this happened. The MRIs may shed some light. The main cath lab doc who worked on her right after she arrived on Friday said it may just remain a mystery. Either way (explanation or no explanation), she will likely leave the hospital with an internal defibrillator which will automatically shock her heart should she ever go into VFib again.

Another of her docs today said folks with her sort of cardiac arrest often spend two weeks in the hospital and then two more weeks in rehab. He then said he expects Nancy’s trajectory to be shorter. It’s nice to have some sort of expectation but, naturally, we will take it day by day.

Nancy’s voice is returning, and she’s been busy schmoozing her nurses, especially in her quest for ice chips. Nothing by mouth until she has a swallowing assessment — standard procedure after ventilator removal. But she has been able to have a few ice chips, which she savors like crazy.

We both thank you for all your love and support. I’ve been reading a few of your posts to her. And we will definitely read them all in the days ahead. Together. I like that together idea a lot.

More as we learn it. Steph & Nancy

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Sunday on the Journey

CaringBridge journal entry by Tonya Katcher – 8/7/2016

Hi everyone,

This is Tonya writing – I’m Stephanie’s niece and a pediatrician who trained in this very hospital not too many years ago. I’m so glad to be here with all of the family, surrounding Nancy and Steph in a web of love and support. Thank you to all who have commented so far.

I’m going to give a little more medical overview of what we know so far, hopefully translated into plain English (which docs are notoriously bad at doing!)

aug-7-sign2

Nancy had a cardiac arrest on Friday morning, which means her heart stopped effectively pumping blood to her body. It seems that she had an arrhythmia called ventricular fibulation, or V-Fib for short. At this point we don’t know what caused this event to happen – most of the time it’s due to a blockage of the blood vessels that feed the heart muscle (aka a heart attack or myocardial infarction) but Nancy does not have any of this blockage, so that’s not the cause in this case. We’re going to investigate further as time goes on, but need to help Nancy get through the aftereffects of this event first. Luckily, Stephanie was with her, and called 911 right away, and started CPR right away – all of which are needed for good outcomes after an event like this. She had a second brief episode of V-Fib in the ICU and was resuscitated again on Friday afternoon with Steph and Dre and Cynthia bearing witness. At that point it looked like she might need to go on cardiac bypass to take over for her heart for a while, but her heart stabilized and that wasn’t necessary. She did have a balloon pump placed in her heart to support its pumping, and that has been in since Friday afternoon.

Things quieted down Friday afternoon and evening, once the pump was in, and all of the things supporting Nancy’s body were in place. She was awake some then as they worked to find a recipe for sedation that would keep her comfortably asleep. She’s been mostly sleeping since then, though opening her eyes at times and responding to directions from the nurses (like squeezing hands, coughing, etc). She’s had amazing, attentive, loving nursing care, and has been surrounded by family and support.

Nancy has needed a lot of support – to support her heart’s pumping, to keep her blood pressure up, the ventilator to breathe for her, oxygen to ease the work on her heart and brain. However, her body has been giving steady signals all along that it’s ready to do all of the things bodies do all on her own, so the process now is one of gradually reducing the supports and letting her body take over.

  • Her heart function is normal, meaning it’s beating with a normal rhythm and is effectively pumping blood throughout her body. The doctors have turned off the balloon pump for brief episodes as a test and her rhythm and blood pressure were steady. They’re planning to take the pump out this morning, which is a bedside procedure. They’re also going to take the big fancy IV’s out of her groin/femoral arteries now, once they get another fancy IV placed in her wrist (that they’re using to monitor her blood pressure).
  • She is on a ventilator to help her breathe, but the nurses are steadily turning down the amount of support she’s getting from the vent, and she’s tolerating that just fine. They’ve also been able to turn down the oxygen. All of which means her lungs are functioning well. She has had a fever off and on, and think she may have a little pneumonia – but she is on strong antibiotics and her lungs are not showing signs of distress, so I think this is not a big worry right now.
  • She has been on medications to keep her blood pressure up, as it was too low right after the cardiac events on Friday. These “drips” have been regularly turned down, and now she’s getting minimal support – also a good sign that her heart and her vascular system is working properly.
  • It took a while to find a good level of sedation to keep Nancy comfortable, but she’s been sleeping comfortably since Friday evening. All of the indicators of her neurologic function have been reassuring. She has been on a continuous EEG brain monitor, and hasn’t had any seizures. The doctor expects that she may have a little bit of injury to her brain due to the periods of cardiac arrest (when the brain isn’t getting as much blood flow as it really needs) but he expects that she will recover. She may have some short-term memory problems or coordination problems initially, but this will likely improve with time.

All in all, despite a terrifying acute cardiac event, all signs are pointing us to be hopeful. The doctors have been really clear that there is still possibility of setbacks and complications, and that this is going to be more of a marathon than a sprint. The immediate next steps are to take out the heart pump and the big IVs in her groin (after which she needs to rest for 6 hours before taking next steps). Then we hope to turn down the sedation so she can wake up a bit and get the breathing tube out. The doc thinks the breathing tube MAY come out tonight, or more likely tomorrow morning. Once those two things are out, the team wants to get an MRI of Nancy’s heart, and possibly a biopsy of her heart tissue, to further investigate the underlying cause of the initial event.

But that’s a day or a few days down the road at least. At the moment, we remain here at Nancy’s side, holding her in love and light. We are grateful for the skilled and kind care we have received, and for Nancy’s strong and beautiful spirit. We are celebrating the many small blessings and victories that have happened so far, and the many ways that Nancy’s body is responding and healing already.

Thank you for following along, for praying and sending woo, for reaching out and holding Nancy and Steph in your hearts. Many people have asked how they can help – we will definitely send out a call if we ned some material support (food, rides, etc). I will update again as I have more information, and am happy to respond to questions if folks want to post them in comments.

Much love,
Tonya

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