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?

Hi could you help me please?

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@auntsuzie33

Hi! I’m, Susan and my grandson was recently diagnosed with HCM.

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Lots of cardiomyopathy in my family. It’s quite a journey. I’ve had 4 heart surgeries n recently got my 5th pacer battery-wireless this round n not fully trusting it yet. Very appreciative n blessed to even be alive💗

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Hello folks ~ I'm Jeanne. I was diagnosed with HCM in July, was at Mayo (saw Dr. Ommen) earlier this month – on 10/4, and have surgery scheduled with Dr. Schaff on 11/3. My head may be spinning just a bit as I begin reading these blogs and realize how little time there is to get ready for this big life event.

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@jkrjourney

Hello folks ~ I'm Jeanne. I was diagnosed with HCM in July, was at Mayo (saw Dr. Ommen) earlier this month – on 10/4, and have surgery scheduled with Dr. Schaff on 11/3. My head may be spinning just a bit as I begin reading these blogs and realize how little time there is to get ready for this big life event.

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Jeanne, It's no wonder your head is spinning! That is quite a lot of information to take in all at once and be scheduled so quickly. You will realize if you keep reading on here, that the one thing we all seem to have in common after the surgery is how wonderful the care is at the Mayo. So rest easy knowing this is part is true. As for getting ready? It's the strangest trip to pack for! I asked for advice on here before my first surgery (cancelled due to Covid pandemic) and then had several more months to prepare for second surgery. The real one! I would say for me, I was sort of in shock a little at how quickly things were moving since I was newly diagnosed at Mayo in November, and scheduled for myectomy in March. Then when the world fell apart, I had four more months to agonize over it! By the time the day of surgery arrived I felt calm and focused. But looking back, it also gave me more time to agonize! It may be better in some ways to get this done quickly. Keep reading on here for tips and advice. There is plenty of it, and all from experience. A couple of my tips for women: A 'lounge' bra or soft sports bra you can step into and pull up. A pair of shoes you can slip on without bending over. I went to TJMaxx and got three soft bras that I adored thru recovery. Some also say wear a shirt you can button as opposed to pulling over your head. For me, that was not a problem and I wore loose fitting t-shirts. Also pants you can easily pull up, like sweat pants or joggers. Makes it so much easier to dress the first few weeks. I also got a 10-pack of wash clothes from Ross. You will need a fresh one every day for several weeks while your sternum heals. Feel free to reach out to any of us, and I'll pray for a perfect outcome for you. Best of everything!

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@karukgirl

Jeanne, It's no wonder your head is spinning! That is quite a lot of information to take in all at once and be scheduled so quickly. You will realize if you keep reading on here, that the one thing we all seem to have in common after the surgery is how wonderful the care is at the Mayo. So rest easy knowing this is part is true. As for getting ready? It's the strangest trip to pack for! I asked for advice on here before my first surgery (cancelled due to Covid pandemic) and then had several more months to prepare for second surgery. The real one! I would say for me, I was sort of in shock a little at how quickly things were moving since I was newly diagnosed at Mayo in November, and scheduled for myectomy in March. Then when the world fell apart, I had four more months to agonize over it! By the time the day of surgery arrived I felt calm and focused. But looking back, it also gave me more time to agonize! It may be better in some ways to get this done quickly. Keep reading on here for tips and advice. There is plenty of it, and all from experience. A couple of my tips for women: A 'lounge' bra or soft sports bra you can step into and pull up. A pair of shoes you can slip on without bending over. I went to TJMaxx and got three soft bras that I adored thru recovery. Some also say wear a shirt you can button as opposed to pulling over your head. For me, that was not a problem and I wore loose fitting t-shirts. Also pants you can easily pull up, like sweat pants or joggers. Makes it so much easier to dress the first few weeks. I also got a 10-pack of wash clothes from Ross. You will need a fresh one every day for several weeks while your sternum heals. Feel free to reach out to any of us, and I'll pray for a perfect outcome for you. Best of everything!

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Thank you so much @karukgirl! I, first of all, appreciate the validation about the head spinning – I think I needed that. I've taken notes of the suggestions, and will evaluate. Any more tips you can think of will be appreciated. When was your surgery? It sounds like May(ish) – was it last year or this?

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