HCM-ers: Introduce yourself or just say hi

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/

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.

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.

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

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?

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.

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.

Angie, you gave me chills, you described the episodes so much better than I did! That is exactly how they felt for me, the doctors never said they could be from AFIB, that is just what I think in retrospective. I can understand you being exhausted, I cannot imagine having them daily, mine were more like every couple of months, and that was miserable enough. It is so frustrating when you know something is wrong, and they can't tell you why. What meds did they give you for AFIB?

The reason I asked about how you were feeling was because when you called them episodes it really caught my eye. I was first diagnosed in January this year with hypertension that I didn't know I even had. They did an EKG, an echocardigram, and found I had a heart murmur, left sided walls of my heart thickened but could not give me a reason for my "episodes". I described them as like an adrenaline rush that rushed from my hips, moved up my chest, then to my head. My blood pressure would go up, and also my heart rate, my legs get wobbly and weak, and I feel dizzy, sometimes it takes my breath away temporarily. They thought I was having anxiety attacks. I denied they were from anxiety. I can be just laying in bed watching TV or having a good time with my grandchildren. No exertion at all, nothing making me anxious. In Feb, diagnosed with HOCM, and in March A -fib. Im still having the episodes even though I'm now on medications for all of the above. I further pushed for more tests. They found a tumor on one of my ovaries and thought perhaps the tumor was secreting hormones into my blood stream and causing the adrenaline rushes. I had the tumor removed 18 days ago. Im still having the rushes. I was never told they could be from Afib. I know some symptoms are from HOCM, similar to those on this site but doctors think my heart is stable at this point. They sometimes last for an hour or so, sometimes 5 or 6 hours. After 4.5 months I'm exhausted from having them daily and just trying to find answers. So when you wrote, "episodes" my antennas went up and wanted to hear more and wondering what they felt like for you. Enough rambling for me. Thanks for listening. Hoping you are doing well.

Thank you so much rrowner!