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Posts (14)

4 days ago · Post septum myectomy in Hypertrophic Cardiomyopathy (HCM)

Hi – sorry you are still having some issues. I had my septal myectomy at the Mayo Clinic in Rochester Minnesota almost a year ago, October 1, 2019. Before the surgery I could barely walk without getting out of breath. Right after the surgery I did not have any of those symptoms anymore. The post op was really hard and the one thing I will never forget is my back pain which was the most painful thing I have ever experienced. Other than that I did not have the same symptoms as before the surgery. My breathing was pretty much back to normal shortly after surgery. It is now gone and I can excersie play tennis etc. What symptoms are you having? I'm hoping they will go away for the Mayo Clinic is great.

Thu, Jun 18 11:42am · HCM Surgery in MN in 44 days in Hypertrophic Cardiomyopathy (HCM)

I don’t remember who sent me the pamphlet for all the hotels and suites. It was either included in the Mayo Clinic paperwork they sent me before my surgery, the concierge or the Mayo clinic travel agency. It had all the accommodations and the prices. I looked On google at the ones that I was interested in to see the photos and the distance to the St. Mary’s hospital. If you call the concierge I’m sure they can send you out one.

Wed, Jun 17 7:40pm · HCM Surgery in MN in 44 days in Hypertrophic Cardiomyopathy (HCM)

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.

Wed, Jun 17 2:30pm · HCM Surgery in MN in 44 days in Hypertrophic Cardiomyopathy (HCM)

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.

Wed, Jun 17 1:11am · HCM Surgery in MN in 44 days in Hypertrophic Cardiomyopathy (HCM)

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.

Sun, May 31 6:49am · Heart Disease: Let’s Talk About the Emotional Side in Heart & Blood Health

Sorry my typing is terrible. The doctors name is Schaff. It was spelled incorrectly in my last post

Sun, May 31 6:45am · Heart Disease: Let’s Talk About the Emotional Side in Heart & Blood Health

I was on the tennis court and from nowhere I got so out of breath. It took about an hour to recover. It’s starting to happen over and over again as I exerted myself. Because I couldn’t get diagnosed properly it got worse and worse. IT got to the point several years later that I couldn’t walk across the room without getting out of breath. We did move to San Diego where the health care was so much better. In the last couple of years it was so bad I had to hold on to a shopping cart in the market I couldn’t do much of anything. Eating carbs made it even worse. My cardiologist here did diagnose me with HOCM wanted me to go to the mayo clinic for a second opinion. While I was at the mayo clinic they found my gradient was up over 100. I really had no life and was very depressed about it. I felt I really have no choice but to have the surgery and it was the best decision I ever made. I was told by Dr Schaffer’s I had HCM my whole life and had no knowledge or symptoms until it became obstructed. I hope this helps. Be well

Sat, May 30 11:06pm · Heart Disease: Let’s Talk About the Emotional Side in Heart & Blood Health

I also had my septal myectomy on October 1, 2019 also with Dr. Schaff. I too are completely free of any symptoms I had before. I stayed in the hospital for either 4 or 5 days and stayed in Rochester for 3 more days. Then saw a doctor before I left. I flew home to California and I was fine. Yes they are supposed to have an article in the JAMA regarding worse symptoms after eating, for carbs usually make your symptoms much worse. Post op was not easy for sure but it was so worth it. (I found a recliner chair which I purchased before I left for Rochester) to be a game changer for the first few weeks. It was hard getting out of my bed. It took about 8 years to finally diagnose me. I really suffered for those years. I went in with a very positive attitude knowing it was at the Mayo Clinic and Doctor Schaff. They are wonderful at St. Mary's Hospital. Do everything they tell you to do .They do a couple of hundred of these a year so they know what they are doing. This surgery has changed my life. I started cardio rehab a few weeks later. With this pandemic there are no gyms so I am walking 2-3 miles 5 times a week. What a difference excercise makes. I wish you all well with your health.