As part of the Ornish cardiac rehab program, our chef prepared delicious plant-based meals for us in the middle of each session. While we have always enjoyed fruits and vegetables, these meals opened our eyes to the many tasty entrees, side dishes, and desserts one can make even when adhering to a strict low-fat, whole foods, plant-based diet. There were curries and pasta dishes, soups and salads, tacos and quinoa burgers, and of course, yummy desserts. Since then, we have been cooking as often as we can, trying new recipes and doing a lot of taste testing. 🙂
Today’s recipe is one that the Swingle family shared with us — sticky sesame cauliflower. If you are a fan of sesame chicken, this dish is a good replacement for that. It is medium spicy, so feel free to use less or more sriracha to control the amount of spice. We rarely use oil, so we reduced the sesame oil from 1 tbsp to 1 tsp and added in 1 tbsp peanut butter.
You don’t need to love cauliflower to enjoy this dish. Stephanie actually doesn’t like cauliflower, but this dish is her favorite plant-based meal so far. The recipe comes from the Vegan Huggs website.
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.
Yes, “blowy” is an actual word — I just looked it up! 🙂
Nancy continues to do well with her recovery — lots of walks to regain her strength and getting out and about on errands, appointments and so forth, too.
Last week we knew Nancy had appointments at the U of M on Monday and Wednesday but we actually went over there for 4 days in a row — Monday thru Thursday. Overall, every appointment was heartening. Such compassionate cardiac doctors and device nurses. Here are a few of the things we learned:
Nancy had an echocardiogram to check on the strength of her heart both generally and after sustaining those 52 Fiona shocks. Her ejection fraction is 65% — this is excellent! Nancy does not have heart failure. Nor does she have CAD (coronary artery disease). Nancy’s heart issues are purely electrical in nature. This why her original event was called a sudden cardiac arrest, not a heart attack (or MI). Her “plumbing” is good! This heart issue remains purely “electrical.”
Nancy is taking a pretty heavy duty antiarrythmia drug called Amiodarone. She was on it during her first hospital stay, but they weaned her off it before discharge. This time she remained on the drug at discharge. Her electrophysiologist here, Dr Roukoz, wants to wean her off it again slowly — over a period of months. This drug has some side effects, so it’s not terrific for long-term use, especially in someone as young as Nancy, he said. Meanwhile, he ran some baseline blood tests, and Nancy had a breathing test, too, to establish a baseline for her lungs. So they will monitor all that closely.
The PVC (premature ventricular contraction) that led to all the ventricular tachycardia (which led to the Fiona firings) is now only present in Nancy’s heart rhythm ONCE per hour on average. This is a good thing! However, this also means that having an ablation to try to stop this particular PVC is not a possibility. It has to be present in order to ablate it. Dr Roukoz said doing the procedure with those few PVCs would take hours and hours! Meanwhile, he is having Nancy wear a fancy, newer type of Holter device for 48 hours to gather all the information he can about her heart and this particular PVC.
Dr Roukoz talked to us extensively about potassium. Nancy’s potassium and magnesium were very low at hospital admission for both cardiac events. He wants her to continue to take a potassium supplement and to eat a potassium-rich diet and stay well hydrated with water and electrolyte drinks. He said that some people are very sensitive to low potassium, and that likely Nancy is. And he wants to reduce this “trigger” to her PVCs as much as possible.
Dr Roukoz has advised no travel for at least 3 months! Nancy may get a special dispensation to fly out to Portland for her Dad’s 90th birthday party in June, depending on how she’s feeling and how things are going. Roukoz especially doesn’t want her to travel after any Amiodarone reductions. The next step down of that won’t be until mid-July. So, there’s a good chance we won’t be leaving the state of Minnesota for much of 2018, which, aside from one summer trip to Norway and a few trips to see family that we’ve had to postpone, is okay with us.
Nancy and I are both tremendously relieved to be home, back in the capable and compassionate hands of her cardiac caregivers, and just 7 miles away from the University of Minnesota Hospital!
Both Dr Roukoz and Dr Bartos (her regular cardiologist) indicated that Nancy’s long-term prognosis is very good. They expect her to make a full recovery and, over a period of months, get back to her full and active life.
In the short term, both Nancy and I remain quite anxious about another Fiona storm coming over the horizon. But we (and the docs!) know a lot more about her storms now. Dr Roukoz said he would recommend intubation and sedation as soon as possible after the very first shock if it were to happen again. He and Bartos feel that part of her storm cycle was the normal surge of adrenaline causing additional heart irritability. So sedation would interrupt that cycle quickly — and also give Nancy relief from Fiona.
Nancy’s also taking a beta blocker called Metoprolol. This is a very common drug for heart issues. They doubled her dose during and after this hospital stay, and it appears that its side affects (lightheadedness from lowered heart rate and low blood pressure) may be affecting Nancy a few times per 24 hours. Dr Roukoz said that he could lower that dose as well if she continues to have issues. It’s certainly affecting her quality of life at the moment and, since feeling lightheaded and nauseous was a precursor to both her big events, it’s just generally alarming.
Folks often have a PTSD reaction after their ICDs (Fiona) go off, even after just 1 firing! So Nancy is going to talk to a health counselor about that and other concerns beginning next week — with a fellow who works right out of the cardiac unit there at the clinic. Nancy says she has a few trust issues to work out with Fiona.
I plan to follow up with a Health Partners psychologist who uses EMDR to help folks with traumatic experiences. I went to see him a handful of times after Nancy’s initial cardiac arrest. Beyond the EMDR process, I found it really helpful to talk to him in minute detail about the morning of Nancy’s arrest — what I saw, did, felt, etc. I imagine we will approach Nancy’s Fiona storm in much that same way.
Nancy and I are so relieved to be home. Did I mention that already? Neither Nancy nor I are ready for Nancy to be by herself yet so we’ve arranged for a friend to spend time with her on several mornings each week while I get a workout in and run errands.
We want to thank you all for your outpouring of support. We’ve had a few spontaneous soup and salad deliveries — thank you for those! For the most part, we’re up and firing on all daily life fronts. If we need anything, we will definitely ask! Over the coming weeks, I know Nancy will want to see many of you locals face to face. As will I!
Like all of you, I’m grateful my Nancy is alive. She is a medical miracle with a miraculous will to live.
Patricia Sween|Apr 14, 2018
We’re so pleased that Nancy is on a good path to recovery. Your thorough report was most appreciated, Stephanie. You both are doing the right things. Love and hugs to you!
susan Donohue|Apr 14, 2018
Oh, Stephanie, what a thorough report of such a complex condition. Trying to take it all in and understand. The important thing is that you are on top of this with amazing doctors you trust who are taking all the right paths to manage this condition. Sounds like all his advice will help. Could it be so simple as potassium levels?? The next few months will show more. Meanwhile, a good idea to talk to therapists to help cope with the events. Very traumatic. But so much promise ahead! Thank you, thank you!
Barbara Taylor|Apr 14, 2018
Thank you for a thorough update. I am available for respite visits Monday, Wednesday and Friday. Feel free to call. Good to see you both at the rec center Friday. Know the outlook is good as you are in good hands and do as told.
Margaret O|Apr 14, 2018
I really appreciate being able to know all the details–and am so relieved that Nancy’s prognosis is positive! It was great to see you guys in Northfield the other day. Love you both!
Claudia Gordon|Apr 14, 2018
I am sitting in my sunroom this morning in St. Paul, trying to bask in some rays of sunshine???……BUT…..your note brought the ‘sunbeams’ to me! What a beautiful blast! Spring WILL come after all and Nancy and Stephanie will make it happen!
Gail Klemm|Apr 14, 2018
Such an uplifting and detailed report – I am one who always appreciates information, so thank you, Stephanie! I have been thinking of Nancy and you, hoping the trip home went smoothly, and that everything was continuing to improve. (Apparently, all but the weather!) Love and peace to both of you.
Lori Ellertson|Apr 14, 2018
Thank you Steph for a detailed explanation of what you and Nancy went through! Love you both to the Moon and back and your in my constant thoughts and pleadings for good health from here on out!
Terry Kenck|Apr 14, 2018
Thinking of Nancy so often and praying for a complete recovery . Thank you for the detailed report, Stephanie….what a blessing you are to Nancy. Really words seem inadequate to express how grateful I feel that Nancy is so well, despite the big challenges that remain. I am on my way to take care of my 20 month old amazing granddaughter…as Nancy knows…also named Fiona! 😃 Maybe the name Fiona means BLESSING! Wishing you joy! Terry
Kari Lipke|Apr 14, 2018
So glad for all the healing, and all still to come!
Mary Ellen Erlandson|Apr 14, 2018
Thanks for the thorough update. Glad to hear the prognosis is good. You’re in good hands at the university. Prayers for continued healing both physically and emotionally.
Jeanne Eberhart|Apr 14, 2018
Stephanie, I enjoyed reading your detailed narrative and read it to Jerry, first because I had my own heart incident a couple of years ago; and second, because he’s worked in pharma for 25 years now. Amiodarone is said to be an extremely effective drug, even after all these years, but does, as you say, have some weird side effects. My robust 90-year-old aunt has been on it from time to time and she says the same thing.
I’ve been on Metroprolol since my valve replacement, and it does agree with me. I’m on 50mg. I remember Nancy having very low BP in the old days, so maybe this is a factor—or maybe not. It does take some doing to get my heart rate up when I exercise!
I like your idea about the PTSD and the EMDR. It’s so caring of you to think of that. I may research that myself.
I believe Nancy and I are FB friends, so please Message me anytime, either of you, to say hello or to ask about any drug Jerry might have worked with.
Su Smallen|Apr 14, 2018
Wow so much good. I know EMDR is effective. Any time you need me to come over, give me a call. Oh, maybe not today, sorry. I can’t even see my neighbors house at the moment (to be fair, his house is white). Lots of love -Su
Patti Pherson|Apr 14, 2018
Positive, life-affirming thoughts and prayers being said for your continued recovery and rest period. Funny how life has a way of kicking us in the arse to remind us to slow down, breathe deeply, hug wholeheartedly and enjoy each precious moment as a gift! YOU are a gift to the world, woman! And Stephanie, you are most definitely a gift to Nancy and those of us who love her!
Kathy Tegtmeyer Pak|Apr 15, 2018
Sorry I missed your visit to campus – would have loved the chance to give a real hug instead of this virtual one. Glad to know that you are back on the path to health. Kathy
Sveinung Skjesol|Apr 16, 2018
Well, now I’m crying 🙂 Thank you, Stephanie, for what looks like full disclosure, it is both comforting to comprehend the help you are receiving, professionally and in your network, and amazing to read about all of your well-advised strategies.
Bummer that Norway is bumped to another year, but we’ll cope!
I think you already thought about this, but I think that even for yourself, this documentation will be valuable. If you are like me (and you might just be, a little, those Hegge genes and all), you think now that you will remember all of these details forever. But you won’t.
Pilgrim Lutheran Church|Apr 16, 2018
Stephanie, thank you for your detailed report. Nancy, so glad you are better and have such great doctors! We missed both of you at the women’s retreat this weekend. Take care and looking forward to seeing you both.
Anne Sabo|Apr 17, 2018
Yes, thank you for updating us so well. When feeling so helpless and far away, I really appreciate being able to follow you both on Nancy’s way to full recovery and, for both of you, the processing of this hugely traumatic episode. It’s great to hear you’re getting such good care, being followed up carefully by professionals, and supported and helped by friends in the community. I did not know you were planning a trip to Norway this summer; what a bummer you’ll have to postpone it, but then I really look forward to seeing you when you do make it over here! Hope you’re having a lovely birthday celebration of LIFE and our special NANCY today! Love you!