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Mon, Jul 6 7:13am · Tips: Traveling to Mayo to get medical care safely during COVID-19 in COVID-19

Hello there,
I am not certain, but I think Mayo Rochester is the center of excellence for heart procedures like mine. I’m having a septal myectomy on Wednesday.
Only a few places in the nation perform these procedures so choice is important for outcome. I believe Mayo is one if not the top in our great Country.

Sat, Jul 4 8:38am · Tips: Traveling to Mayo to get medical care safely during COVID-19 in COVID-19

Happy 4th of July! Thank you for the great suggestions listed here about travel to Mayo Rochester. We are leaving this morning, driving to Sacramento to board a non-stop flight on Delta to MSP. From there we use a shuttle for the hour and half drive to Rochester. I spoke with the PA in the Cardiovascular Surgery Dept on Wednesday this week to go over Covid-19 questions. They have changed the appointment schedule for Pre-Op patients. Now all Pre-op lab work is done through one 'stick' at your Covid test. Both nasal and blood are tested. Your companion is only screened by questions and has to wear a mask, as all who enter do. So consolidating the labs with Covid was a good idea. Less stress. And those who face surgery surely are stressed.
We are taking hand sanitizer, wipes for surfaces, wearing masks and will practice the 6 ft social distance to the best of our ability. I would hate to get exposed to this virus in the airport after three months of being stuck at home and not going anywhere. So first trip out 'there' for us. Lots of testing ahead. And then the big surgery on the 8th. This site has been great for information and encouragement. I'll be thinking about the others here who are going to Mayo this month. God Bless America! Happy 4th of July!

Mon, Jun 8 9:06am · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Hello hjanet8,
I am having a septal myectomy in July too. I was originally scheduled for March 20, but when it became clear the global pandemic was taking over, I had to postpone. I stalked this group for a couple of months before I jumped in here to ask the same question you did. I got some great responses. Poke around here and you'll find a treasure trove of information and good tips. From flying to what clothes to wear. Educate yourself as much as you can. I feel like the more you know, the less you fear. The battle tested warriors on this site who have already experienced what we are going to face have a lot to share.
The internet is full of information about this condition, about what to expect after open heart surgery, and so much more. Since I am in the same place as you, I can't offer advice about what to expect after surgery. But I can share with you what is helping me right now. First I have the Lord…and after that I know I am in the hands of the Mayo Clinic, and I have an amazing partner who will be my advocate and suitcase manager. I read all I could on here. There is a lot of great suggestions, so that would be my advice to you. Gather all you can, process it, and know you've done all you can to prepare emotionally and mentally. It's is a frightening concept. We have to first survive surgery, then recovery. I have a father on Hospice, so for me making sure I have him situated before I leave is important to me. I have my Living Trust in place. I have made arrangements for my best friends to come visit and help after I get home. I have lots of wash clothes. A new recliner. And I have started the packing process. I pray the best for you. Be brave. Best wishes.

Sat, May 30 11:14am · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Wow Angelia! You have a lot on your plate to say the least! You have faced so much already and still have more to deal with. You sound like you have a positive attitude and that will help you get through. I'm so sorry you have had such a difficult time lately. I'll keep you in my prayers that you heal from your surgery, and get through all the other things. If you do end up having a septal myectomy, you will want to be in the best shape emotionally and physically. So it sounds like it worked out the way it should not coming to Mayo sooner. They say everything happens for a reason. Take your time and heal yourself.
To answer your questions: Yes, my new surgery is July 8. When the pandemic shut down the World, we postponed it to July thinking Covid 19 would be in the rearview mirror by then. Who knew it'd still be hanging out there? I will be flying from Sacramento to MSP/St Paul with my significant other/designated bell boy. I asked this group of brave warriors about flying after a septal myectomy and the consensus was, yes, you can definitely fly. The folks on this sight that have gone through this have shared their experiences, and I can tell you, while each story differs, because we are all unique, their responses have helped me to not feel alone. I hope it helps you too. Before the Pandemic I lost my mom. The day before Easter I had to put my dad on Hospice, and four days later I lost my job at the hospital I've work at for 19 years. So what you said about those who pray are praying the next half of 2020 is better is so true…we all want things to get better. You take care of yourself. Best wishes facing your next challenge.

Fri, May 29 9:58am · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Hi Angelia,
Welcome. You will find a lot of answers to your questions here, you just need to poke around a little. There is something comforting knowing you are not alone in your new diagnosis. It must feel frustrating to be such an active person, doing all the remodeling you've done, going from there to hearing you may need a septal myectomy! Fear is a normal response to hearing this, so you are not feeling anything abnormal there. I felt compelled to respond to you after I read your words "I'm scared, want my life back and feel alone with my symptoms." I would venture a guess all of us with HOCM feel just like you do! You ask for someone to share their symptoms, medications, and what if anything is helping.
Each person is unique and no two are alike, we all know that, but that being said, there are a lot of similarities we share in this diagnosis too. Short of breath with minimal exertion. Chest pain. Unable to do what used to be easy. Irregular heart rhythms. Increased symptoms after a large or high carb meal. The list is extensive.
I can share with you that I too was recently diagnosed at the Mayo Clinic in November 2019. I live in far Northern California in an area of incredible beauty. I'm a big time hiker. Lassen, Shasta, Whiskeytown. I walked 7 miles a day, hiked every week. And then I couldn't anymore. Something was wrong. I was misdiagnosed for several years. Until being my own advocate and finding my way to the Mayo. I was numb hearing the cardiologist tell me I needed a septal myectomy. I sent me off right then to Dr. Bagameri, the surgeon. He confirmed. Shocking! I was scheduled on March 20, 2020 to undergo this surgery, but alas, the Global Pandemic shut down the world and I had to postpone. I am now on for July 8. I asked the group for tips on getting thru such a brutal surgery and got so many wonderful responses. So for you the same is true. There is a lot of information here. You just need to search for it. The moderators are wonderful. They can guide you around and help you. You are on a journey you didn't see coming…and information is power. Learn all you can about this condition, listen to your doctors. Eat healthy and stay as active as you can. Covid 19 is not your friend, so take extra precautions out in the community. You are not alone. Your fear is normal, and with information comes power. For some, medication works. For others, it doesn't. Medication does not cure this, it controls symptoms. The Mayo Clinic is world famous for a reason. They are the best. Their opinion should be considered. But as is always the case, the decision is yours and yours alone to make. It isn't something to take lightly. I will be praying for you and wish you the best. Stay strong. Best regards.

Sun, Mar 22 7:52am · Heart Disease: Let’s Talk About the Emotional Side in Heart & Blood Health

It's comforting to think that you may be weird or maybe crazy…and then read on this board I may not be alone in my weirdness. I have noted in the past year or so, if I eat a 'robust' meal, the fun kind of food, mostly carbs or heavy like say a hamburger and fries, or biscuits and gravy with a mimosa, I get pain and/or tightness in my chest, a tight constricting like feeling in my neck, tachycardia, dizzy or like a head rush and feel generally bad. I thought it was just me, but I have seen it mentioned before. Interesting symptom to dietary indiscretion. It doesn't seem to have a preference; breakfast, lunch or dinner. Not every meal or every day.

Wed, Mar 18 12:51pm · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Thank you for your response! You are correct. It was super stressful making the decision to postpone. I was packed and as ready as I ever would be to go. That was Monday, here we are today Wednesday, and the White House is strongly urging all hospitals to cancel elective, non-emergent surgeries. So it was the right choice. Things change hourly it seems! I do feel like it was the right thing to do and listen to what the President is urging ALL Americans to do…to cancel all non-essential travel, stay home if you can, and not to lose hope or freak out. We will get through this.
I recognize that I would have been consuming a large amount of intensive services, using lots of PPE and taking up space that an unplanned critical patient may need. That is a greater cause.
The Mayo cardiologist I saw, Dr. Titus Evans, suggested to me that although I have a pretty big obstruction, that I am not critical, and to schedule as soon as was possible. I don't think anything has changed since he told me that in December, heart-wise, so I'm not afraid that postponing until July or August will risk my life. But I do think having open heart surgery during a Global Epidemic would!
As you mentioned, patients who've had surgery are more susceptible to infection. And it seems this is a highly contagious bugger.
I have not yet heard back from Dr. Dearani's scheduler, as he will be the "co-pilot" for my septal myectomy. Dr. Bagameri will be the pilot. This will happen when it happens. I'm so grateful to this community. Who but those who share this condition or have had surgery know what it's like?!
I feel like my issues are so insignificant compared to the suffering of others. It's easy to put things into prospective because this isn't all about me…this is an unheard of time in history. And we can and will overcome, it will take time and patience. I pray for the doctors, nurses, all healthcare workers, police, military, EMTs, all those who serve and protect us. Thank you for thinking of me.

Wed, Mar 18 11:00am · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Thank you kind Sir,
I feel better today about making the decision to postpone…it seems like things get a little worse everyday. Although the media appears to enjoy watching the panic in society. The world has gone mad! The sky is falling!
Hopefully when we get the official new date, there will be toilet paper available once again 🙂
I was more concerned about all the wineries being closed, so I stocked up on Chardonnay!
Thank you for your vote of confidence…I second guess myself all the time. It feels good to get confirmation. Meanwhile, the waiting game continues…