HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect – a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

@hjanet8

Hi, I have HCM and I am going to have surgery in July. I am wondering about the recovery so I can prepare myself mentally and physically.

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Hi there is not much to do physically. Mentally set your life in order leave nothing left unsaid to the ones that you love. Get ready to hurt don't be afraid to get max pain meds to start easier to get up with it. I myself have been opened up 3 times for HOCM, SAM, Two valve replacement. Don't worry you go to sleep then you wake up. I will pray for you. RMc.

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@hjanet8

Hi, I have HCM and I am going to have surgery in July. I am wondering about the recovery so I can prepare myself mentally and physically.

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Welcome to Mayo Clinic Connect, @hjanet8. Such a good question to ask about recovery so that you can prepare yourself mentally and physically. You'll appreciate these discussions where @ronpetrovich @bpickartz @rrowner2 @carsangelop @mbcube @badmac @karukgirl and other members have shared their recovery experiences.

– HCM CARE tips – What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
– What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
– Freaking out a bit – Upcoming surgery! https://connect.mayoclinic.org/discussion/freaking-out-a-bit/

Janet: Where are you having your surgery, if I may ask?

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Good Morning . . . I am new to this link and it is a blessing. The information is so appreciated and now to have someone to reach out is a comfort. I am retired and living a quiet life that is not so easy with all the current circumstances in our world. Thank you for offering this service. In gratitude, gerri

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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.

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Hello. It sounds like you have done your homework and after very prepared. I also am scheduled for surgery, Septum Myectomy in July. My Insurance took forever to approve the surgery at Mayo and was out of my HMO. Approval came on Wednesday, two days after restrictions went into place due to COVID-19. I am now trying to get ready for these trip. I have found so many great tips on this site. I really am so grateful for all who have taken their experience and help others as we take this difficult and scary journey ahead of us. I heard that there are homes that you can rent near Mayo's for patients and their families. Has anyone taken that option instead of going to a hotel? I also was also told that the Hotels will give Mayo Clinic patients' discounts if you let them know. Has anyone any advice or knowledge of either of these options for housing? Thanks in advance.

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@angiev18

Hello. It sounds like you have done your homework and after very prepared. I also am scheduled for surgery, Septum Myectomy in July. My Insurance took forever to approve the surgery at Mayo and was out of my HMO. Approval came on Wednesday, two days after restrictions went into place due to COVID-19. I am now trying to get ready for these trip. I have found so many great tips on this site. I really am so grateful for all who have taken their experience and help others as we take this difficult and scary journey ahead of us. I heard that there are homes that you can rent near Mayo's for patients and their families. Has anyone taken that option instead of going to a hotel? I also was also told that the Hotels will give Mayo Clinic patients' discounts if you let them know. Has anyone any advice or knowledge of either of these options for housing? Thanks in advance.

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Hi @angiev18, I am happy to hear that your surgery was finally approved and that you are preparing for the trip. I have added a link below to one of the discussions on Connect about tips for traveling safely during Covid-19. I think it would benefit you greatly to read some of the members solutions and possibly pose your own questions.
https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

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@amandaburnett

Hi @angiev18, I am happy to hear that your surgery was finally approved and that you are preparing for the trip. I have added a link below to one of the discussions on Connect about tips for traveling safely during Covid-19. I think it would benefit you greatly to read some of the members solutions and possibly pose your own questions.
https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

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Thank you.

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Hello fellow HOCM folks. It's been six weeks since my surgery at St.Mary's in Rochester. First, I survived! Second I made it home safe. All the things that happened in between were either unexpected (like seeing 'stars' after surgery for weeks) or expected (like the pain)
The unexpected may have happened to others who had surgery, but for those whose surgery maybe coming up, I would like to share them just so you too can be prepared. You have to know that with surgery of this magnitude, pain will be there. So plan for that. I only had half of one half of a pain pill the entire 5 day stay, and the rest of the time I got plain Tylenol. Which didn't do much for me. The five days feel as though time is crawling…but it also went quickly. I won't bore you with each day's progress…but the day I got the chest tubes out was a milestone! And the next day the wound vac came off was good too. You feel so free! So, the strange things I was not expecting: Stars. I would see stars through out the day. I still do, but not as much as right after surgery. I also get 'ocular migraines' and these came on with a vengeance. The PA said it was probably due to anesthesia. In fact, most everything that didn't make sense was blamed on anesthesia. Then there was the pain in my clavicles. Ouch. They hurt so much. It all goes along with having your chest opened. A lot of torque is placed in certain areas, like between your shoulders and your upper chest. The nursing care is beyond care. These people are stellar! They could not be any finer as human beings. In fact everyone I had contact with, from housekeeping to the surgeon were wonderful, caring, compassionate people. I was not prepared for ICU. I don't want to scare anyone who may have surgery coming up, but it was intense. Hence the name, Intensive Care Unit. We stayed at the Courtyard Marriot which is directly across the street from the front entrance of St. Mary's. I highly recommend them. There are other places along 2nd street, but none this close and seriously across from the main entrance. For your support person, this is a good place too. Talk about convenience. There are so many little details I could share, but I fear my post would be too much for the board to handle! There is a McDonald's next door to the hotel for weak moments. There is a wonderful healthy grocery store called Fresh Thyme that is within walking distance and carries water, healthy foods and snacks and wine! Random thoughts: I was very happy with my Old Navy wide leg linen pants. Easy on, easy off, didn't wrinkle. I was very very happy with my 'lounging' bras from Marshalls. Easy on. Easy off. For me, I wanted the support but nothing with wires, hooks, lace. Nothing. Just support. I was very happy I took slip on shoes. I was able to pull shirts on over my head…but it does hurt. I managed to pull on a dress too. We walked to St. Mary's, where you are screened everyday for Covid, got our day of the week sticker, and then we were able to board the free shuttle to downtown at the Gonda and walk where ever we needed. Including our last day there when we went to Chester's. Best place! Yum! Your appetite is stressed, things taste funny or strong, but it all comes back. You hurt. It takes several weeks to move with ease. That is coming along. I started cardiac rehab at the end of three weeks. Early but doable. I started driving at the end of three weeks also. Not advised, but I had too. It was important. Sadly, three days after I got home, my sweet, WWII daddy died. So the stress piled on top of stress. But four weeks later, I still grieve and know that stress management is important. Be kind to yourself. Take each day as a gift, but go slow. Don't over do it. Easy to say. Hard to follow my own advice. I was out walking three miles each day as soon as I could. These are just some random thoughts, thrown out to those who may be on the surgery schedule. There is NO finer place than the Mayo Clinic. You are in the best hands ever. This is your life. It's hopefully a one time surgery for you…so you deserve the best. Thanks for letting me post this. Reporting live from the smoke-filled skies of Northern California, this is a survivor!

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@karukgirl

Hello fellow HOCM folks. It's been six weeks since my surgery at St.Mary's in Rochester. First, I survived! Second I made it home safe. All the things that happened in between were either unexpected (like seeing 'stars' after surgery for weeks) or expected (like the pain)
The unexpected may have happened to others who had surgery, but for those whose surgery maybe coming up, I would like to share them just so you too can be prepared. You have to know that with surgery of this magnitude, pain will be there. So plan for that. I only had half of one half of a pain pill the entire 5 day stay, and the rest of the time I got plain Tylenol. Which didn't do much for me. The five days feel as though time is crawling…but it also went quickly. I won't bore you with each day's progress…but the day I got the chest tubes out was a milestone! And the next day the wound vac came off was good too. You feel so free! So, the strange things I was not expecting: Stars. I would see stars through out the day. I still do, but not as much as right after surgery. I also get 'ocular migraines' and these came on with a vengeance. The PA said it was probably due to anesthesia. In fact, most everything that didn't make sense was blamed on anesthesia. Then there was the pain in my clavicles. Ouch. They hurt so much. It all goes along with having your chest opened. A lot of torque is placed in certain areas, like between your shoulders and your upper chest. The nursing care is beyond care. These people are stellar! They could not be any finer as human beings. In fact everyone I had contact with, from housekeeping to the surgeon were wonderful, caring, compassionate people. I was not prepared for ICU. I don't want to scare anyone who may have surgery coming up, but it was intense. Hence the name, Intensive Care Unit. We stayed at the Courtyard Marriot which is directly across the street from the front entrance of St. Mary's. I highly recommend them. There are other places along 2nd street, but none this close and seriously across from the main entrance. For your support person, this is a good place too. Talk about convenience. There are so many little details I could share, but I fear my post would be too much for the board to handle! There is a McDonald's next door to the hotel for weak moments. There is a wonderful healthy grocery store called Fresh Thyme that is within walking distance and carries water, healthy foods and snacks and wine! Random thoughts: I was very happy with my Old Navy wide leg linen pants. Easy on, easy off, didn't wrinkle. I was very very happy with my 'lounging' bras from Marshalls. Easy on. Easy off. For me, I wanted the support but nothing with wires, hooks, lace. Nothing. Just support. I was very happy I took slip on shoes. I was able to pull shirts on over my head…but it does hurt. I managed to pull on a dress too. We walked to St. Mary's, where you are screened everyday for Covid, got our day of the week sticker, and then we were able to board the free shuttle to downtown at the Gonda and walk where ever we needed. Including our last day there when we went to Chester's. Best place! Yum! Your appetite is stressed, things taste funny or strong, but it all comes back. You hurt. It takes several weeks to move with ease. That is coming along. I started cardiac rehab at the end of three weeks. Early but doable. I started driving at the end of three weeks also. Not advised, but I had too. It was important. Sadly, three days after I got home, my sweet, WWII daddy died. So the stress piled on top of stress. But four weeks later, I still grieve and know that stress management is important. Be kind to yourself. Take each day as a gift, but go slow. Don't over do it. Easy to say. Hard to follow my own advice. I was out walking three miles each day as soon as I could. These are just some random thoughts, thrown out to those who may be on the surgery schedule. There is NO finer place than the Mayo Clinic. You are in the best hands ever. This is your life. It's hopefully a one time surgery for you…so you deserve the best. Thanks for letting me post this. Reporting live from the smoke-filled skies of Northern California, this is a survivor!

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So helpful, @karukgirl. Thanks for reporting from the front lines of a HCM survivor. It truly is helpful for those who are newly diagnosed to learn from people who have been there.

And just how grateful were you for your heart-shaped pillow?

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@colleenyoung

So helpful, @karukgirl. Thanks for reporting from the front lines of a HCM survivor. It truly is helpful for those who are newly diagnosed to learn from people who have been there.

And just how grateful were you for your heart-shaped pillow?

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Thank you, Colleen! I can't tell you how valuable it was for me to be able to read about others stories, symptoms and experiences. If even one thing I mentioned can help someone else, I am beyond grateful. I am also grateful for my heart-shaped pillow. It's a great souvenir and reminder of how much stronger we are than we believe. It came in handy to 'prop' my arms up during recovery. Your shoulders and neck are 'wound up" so tight you can't relax them for some time. I am at just past the 6 week mark and still use my pillow while I watch TV at night. Thank you for your kind response. I hope I could help another HOCM person. I'm still so impressed how amazing Mayo Clinic is. World Famous for all the good reasons!

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