Journal entry by Stephanie Fay
Hello again, folks —
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!