positivity
@positivity
@positivity
Posts: 5
Joined: Sep 08, 2017
Life after HCM Surgery
I want to share my experience with my HCM and the surgery. I’m 42 year old male and was diagnosed with HCM at age 30. Initially metoprlol worked great for me as gradient (100 to 20) dropped significantly. I used to get cardiologist check up and ultrasound every year and last year I started having more symptoms. Gradient stayed high (85) and climbing stairs and walking became difficult. My cardiologist recommended a surgeon and I met him and he shocked me by recommending a heart transplant. After few days of being in denial stage, me and my wife decided to contact Mayo clinic. We went to Mayo clinic in April 2017 for consultation and met Dr. Oommen and Dr. Shaff.
Finally on Sept 15th 2017 We decided to get the myectomy surgery done. Everything went well and had to stay 5 days after Surgery in hospital and flew back (3 hr flight) on 11th day. We stayed in hotel for few days after hospital discharge. In the hospital I had nausea and taking medication was a big issue. I used to throw up a lot, i had to try tablets with yogurt etc to get it inside. I recovered well and was able to walk few times a day at the hospital. Today i’m on the 14th day after surgery and I have stopped taking pain medication, no pain as such. My sleep is getting better each day and I’m working on breathing to get my lungs do better. Overall I’m so happy I did teh surgery and can already feel the difference.
Jamie Olson
@jamienolson
@jamienolson
Posts: 539
Joined: Apr 21, 2016
@klasicnails Would like to hear of people who have had surgery for this disease
Hello @klasicnails, Welcome to the HCM group. You will notice that I moved your topic to a thread where members are discussing life after HCM surgery. When replying to other members hit the reply button then type what you would like to say then hit “post reply”. I’m moderating the community this weekend and am here to answer any questions you may have about navigating the system- just let me know. 🙂
jshah
@jshah
@jshah
Posts: 13
Joined: Nov 13, 2017
@vialox Hi positivity,
glad you feel better after myectomy. I am 7 weeks today after mine. Also was consulted with Dr.Ommen and the surgery done by Dr. Schaff. My recovery was smooth, – so far so good and don’t have the symptoms that forced me to look for better option than not working in my case medication (keep my fingers crossed). Hopefully it lasts…
Thank you sooooooo much. Appreciate your help.
vialox
@vialox
@vialox
Posts: 17
Joined: Mar 05, 2017
@vialox Hi positivity,
glad you feel better after myectomy. I am 7 weeks today after mine. Also was consulted with Dr.Ommen and the surgery done by Dr. Schaff. My recovery was smooth, – so far so good and don’t have the symptoms that forced me to look for better option than not working in my case medication (keep my fingers crossed). Hopefully it lasts…
I was freaking out after diagnosis too, but after reading a lot of people’s experience over here and on 4hcm forum calmed down.
Usually people more prone to report about bad things, but both forums are flown by positive outcomes. In my case it triggered my decision to look for symptom relieve by surgical means, though in the COE clinic + by one of the Mayo’s star-surgeon. When they put me on table I was calm as boa… and now after 5 months passed don’t regret about the decision a bit. Somehow my confidence was convincing to family members, – so they didn’t have hard time. They checked me regularly after the op on my 1st wake up, and following days and in between visited local sights. I agree with nightlite8 about the nurses there – they are super professional and the same time very kind …
In other words, – everything is going to be OK. Even more than OK. Your husband will see the difference maybe not the next day but after a week for sure. Wish you well!
jshah
@jshah
@jshah
Posts: 13
Joined: Nov 13, 2017
@vialox Hi positivity,
glad you feel better after myectomy. I am 7 weeks today after mine. Also was consulted with Dr.Ommen and the surgery done by Dr. Schaff. My recovery was smooth, – so far so good and don’t have the symptoms that forced me to look for better option than not working in my case medication (keep my fingers crossed). Hopefully it lasts…
Thank you so much. You are the 1st person who replied on my freaking out feeling. Thanks so much.
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
@klasicnails Would like to hear of people who have had surgery for this disease
I had a myectomy at Mayo almost 12 years ago. I wrote about my experiences here:
http://Www.cynthiassummeradventure.blogspot.com
I also write a current informational blog about HCM that has a page of resources for people undergoing myectomy:
http://Www.hcmbeat.com/resources-for-patients-about-myectomy
Hope that helps!
Liked by Cynaburst, Alumna Mentor
@nightlite8
In reply to @vialox
My husband is almost 4 weeks post surgery. He has been doing wonderful. He had a myectomy and a triply bypass. Someone had suggested that we buy a remote recliner. So thankful we were prepared. He is still sleeping/sitting in the recliner for the most part. When he tries to lie flat he coughs. Be prepared for no appetite and also that nothing he eats tastes good. I made the mistake of taking a pair of pants a size smaller for him to travel home in ( we are 7 hours away). I did not realize that he would be bloated. He was 12 lbs heavier than when he checked in.
Your husband will do great. Every nurse at St Mary’s was amazing and they will keep your husband and you feeling positive. We could not have had better care.