HCM Surgery in MN in 44 days

Posted by stanleyta @stanleyta, Jun 16, 2020

My husband was Diagnosed this past November with HOCM, and now a myocardial bridge. Heading to Mayo in Rochester in July for a myectomy and unroofing. We are traveling from Florida, does anyone have any tips or suggestions for the hospital stay or lodging? My husband is worried about the financial strain on the family, so any cost saving tips would be greatly appreciated.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Hi @stanleyta, I'm confident that others, like @cynaburst @debcrawford @1949 @PatMattos @karukgirl @rrowner2, will chime in with their favorite recommendations for lodging in Rochester MN while at Mayo Clinic. I'd like to provide you with a list of discussions in the Visiting Mayo Clinic group (https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/) that I think will help you to prepare, especially in these changing times of COVID.

- Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/
- Suggestions for a stay at Mayo Rochester https://connect.mayoclinic.org/discussion/suggestions-for-a-stay-at-mayo-rochester/
- Travelogue about a visit to the HCM Clinic at Mayo Clinic - Rochester https://connect.mayoclinic.org/discussion/travelogue-about-a-visit-to-the-hcm-clinic-at-mayo-clinic-rochester/
- Tips for your first Mayo Clinic visit and tests/appt schedules https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/
- Tips needed: How do you manage finances during a big medical event? https://connect.mayoclinic.org/discussion/tips-needed-how-do-you-manage-finances-during-a-big-medical-event/
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

I think you'll find a lot of great information in these discussion. Hopefully I didn't overwhelm you. What questions weren't answered in these discussions? What else would you like to know? There are many here who have walked this path and are happy to share their experiences.

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I was told that if you let the Hotel's know that your husband is a patient at Mayo's they well give ypu a discounted rate. Also, you can Google, furnished homes, apts available to rent near Mayo's and post pictures of the inside, outside and let you know how many they accommodate. I also am having Septum Myectomy in July and just beginning to search for accommodations.

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You can call the mayo Clinic concierge and they will send you all the accommodations and the prices. Yes you do get a mayo discount. The Mayo Clinic also has a travel agency if you need flights or shuttles. I had my septal myectomy 8 months ago in October and I found these services very helpful since I came from California. Dr Schaff was my surgeon. You are in very good hands. The post op is not easy but I am so glad I had the surgery. It gave me my life back. I never get out of breath anymore. I feel like my old self. No more symptoms. I couldn’t walk across the room before the surgery for I got so out of breath and dizzy. And now I am on the treadmill, playing pickleball etc. Good luck I’m sure you will do well.

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I am so happy for you. That is what I keep saying, "I want my life back". Did you work before your surgery when you were having symptoms? Im retired. And I just wonder how anyone could possibly work having these symptoms from HOCM. Not able to walk across the room, being dizzy, shaky, weak, almost fainting. Wondering if anyone had problems with finding the right blood pressure medications until they could get scheduled for surgery. My blood pressure meds are lowering my heart rate so low that my symptoms are just as bad as having my heart rate and blood pressure to high. Anyone have that problem while waiting for your Septum myectomy?

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I had to go off of Losartan with HOCM. Blood pressure too low. I did work but had to stop. I had distolic dysfunction and heart failure from this. Now all gone. My blood tests are great. You are going to be fine. Mayo has videos o what they do for septal myectomy. By the time I got done reading and researching and finding that the mayo clinic in Rochester Minnesota does 200 to 250 of these a year so they really know what they’re doing. I went in with such a positive attitude knowing that they were going to take care of me. There’s so many people in this group that have such good information so read all you can. A recliner that was suggested was a lifesaver I don’t know what I would’ve done without it because it was so hard to get in and out of a bed for the first few weeks. Again good luck I know you will be OK.

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@lailaamin

I had to go off of Losartan with HOCM. Blood pressure too low. I did work but had to stop. I had distolic dysfunction and heart failure from this. Now all gone. My blood tests are great. You are going to be fine. Mayo has videos o what they do for septal myectomy. By the time I got done reading and researching and finding that the mayo clinic in Rochester Minnesota does 200 to 250 of these a year so they really know what they’re doing. I went in with such a positive attitude knowing that they were going to take care of me. There’s so many people in this group that have such good information so read all you can. A recliner that was suggested was a lifesaver I don’t know what I would’ve done without it because it was so hard to get in and out of a bed for the first few weeks. Again good luck I know you will be OK.

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When did you have your surgery? Were you able to get out of the recliner by yourself? When you were discharged after your surgery did you stay nearby at hotel and did they have the specialized recliners or did you just sleep in regular bed? So many questions!! Oh my!!

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My husband had septal myectomy October 4 2018
We traveled from California and stayed at Homewood Suites opposite St Mary’s just. 2 min walk. My husband slept in a regular bed with pillow support following surgery for 2 days at the hotel (no recliners) at home he used a support pillow in bed and was able to get in and out by himself. I’ll clarify all this by saying he was physically fit prior to surgery which was important to his recovery We have a Scandinavian recliner which worked well for him
The hotel serves breakfast and complimentary light dinner during the week.
There’s always someone to answer questions at the hotel
Hope this helps
Maureen

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@angiev18

When did you have your surgery? Were you able to get out of the recliner by yourself? When you were discharged after your surgery did you stay nearby at hotel and did they have the specialized recliners or did you just sleep in regular bed? So many questions!! Oh my!!

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I had my surgery October 1, 2019. After I left the hospital I went back to my suite (I had a sweet because my three children were there and my husband). My children went home and I stayed there a couple of more days saw the nurse practitioner before I left to make sure everything was OK and the next day I went on a plane to go home.. I purchased a recliner before I left home at the advice of a few people who have had the surgery. Yes I could easily get out of the recliner. Some of the places in Rochester have recliners so you can request that. It was very hard to get out of the bed because you’re not allowed to push yourself up so the recliner was a godsend. There are two places right across the street from st. Mary’s Hospital which would make it nice to go in and out of the hospital so you might check those out they were very reasonable. Like I said I got an apartment because I had four people with me. There are several restaurants and coffee shops right around there also. I was in the hospital for about five days and stayed a couple of xtra days just to make sure everything was fine.

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@rrowner2

My husband had septal myectomy October 4 2018
We traveled from California and stayed at Homewood Suites opposite St Mary’s just. 2 min walk. My husband slept in a regular bed with pillow support following surgery for 2 days at the hotel (no recliners) at home he used a support pillow in bed and was able to get in and out by himself. I’ll clarify all this by saying he was physically fit prior to surgery which was important to his recovery We have a Scandinavian recliner which worked well for him
The hotel serves breakfast and complimentary light dinner during the week.
There’s always someone to answer questions at the hotel
Hope this helps
Maureen

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Thank you for the information. I will definitely look into Homewood Suites. Nice for breakfast sund light dinner provided. A support pillow, that's a good tip. Hoping he is doing well. Thank you so much.

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@lailaamin

I had my surgery October 1, 2019. After I left the hospital I went back to my suite (I had a sweet because my three children were there and my husband). My children went home and I stayed there a couple of more days saw the nurse practitioner before I left to make sure everything was OK and the next day I went on a plane to go home.. I purchased a recliner before I left home at the advice of a few people who have had the surgery. Yes I could easily get out of the recliner. Some of the places in Rochester have recliners so you can request that. It was very hard to get out of the bed because you’re not allowed to push yourself up so the recliner was a godsend. There are two places right across the street from st. Mary’s Hospital which would make it nice to go in and out of the hospital so you might check those out they were very reasonable. Like I said I got an apartment because I had four people with me. There are several restaurants and coffee shops right around there also. I was in the hospital for about five days and stayed a couple of xtra days just to make sure everything was fine.

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Alot of great information. How did you find the Suite you stayed in? Online? Thank you so much!

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