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positivity
@positivity

Posts: 5
Joined: Sep 08, 2017

Life after HCM Surgery

Posted by @positivity, Sep 29, 2017

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.

REPLY

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…

@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…

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Hi Vialox

Great to hear that. I have a question, Do you know when will it be ok to start sleeping on my sides? Right now I’m sleeping mostly on back and it kind of hurts if i try to sleep side ways.

Also did you do Cardio rehab? when did you start driving?

@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…

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@positivity
first two weeks I slept in recliner. I started checking a side sleeping around 3d week (at the beginning very carefully). After 4th week I sleep on side or stomach without problem. I could drive just after discharge since didn’t have problems with upper body (shoulders), but didn’t do it until day 10 after surgery. My main pain was during laying down and getting up from horizontal position for 2 weeks (that’s why I used recliner). Once I was up I felt virtually as a healthy person, – no problem with walking whatever. I started rehab on week 3 and going to be graduated next Monday. So in total it took 4+ week, though the whole course they proposed is about 12 weeks.
It seems everything healed now, – I don’t have any pain or discomfort – everything in the body felt natural… But just in case I am going to be careful with weight lifting for another month or two and then check with my physician.

What’s your gradients now.

Liked by janicepike

Pliz tell me about detail of expenditure pliz.

I have a peak gradient of 100 mm Hg. My septam is thickened to 24 mm. I feel breathlessness and chest pain during walk.

Pliz tell me the cost estimate of myomectomy in detail.

I would be highly obliged.

@zargul

Pliz tell me about detail of expenditure pliz.

I have a peak gradient of 100 mm Hg. My septam is thickened to 24 mm. I feel breathlessness and chest pain during walk.

Pliz tell me the cost estimate of myomectomy in detail.

I would be highly obliged.

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Hi Zargul
My gradient is 0 now (after surgery). The expenditure part I need more time. I went through my insurance and waiting for the initial estimate to come in. I already hit my out of pocket maximum so I dont expect my cost to be too high. I’ll confirm once I get the bill

@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…

Jump to this post

Vialox

Its very encouraging to hear your good experience. I’m very much looking forward to my 4th week so that I can sleep on side and stomach. I’m on 3rd week and did try little bit on side but not fully comfortable. I’m starting to work from home this week (3rd week) and will go to office on 4th. I’m little hesitant about cadiac rehab mainly because taking 3 days every week out of work for few hours will be difficult. How did you get rehab to 4 weeks when the proposal was for 12weeks?

Glad you are doing well! Thanks for sharing your experience.

@zargul

Pliz tell me about detail of expenditure pliz.

I have a peak gradient of 100 mm Hg. My septam is thickened to 24 mm. I feel breathlessness and chest pain during walk.

Pliz tell me the cost estimate of myomectomy in detail.

I would be highly obliged.

Jump to this post

Thanx for your response.

I am from Pakistan far away from there,  that’s why I ask for plus minus estimate so that I come there having requisite financing.

Eagerly waiting for your reply.

Positivity,
I told in rehab that I am using treadmill at home and measuring my BP too. Since my vitals during sessions were ok they agreed to graduate me earlier. Today I got certificate and T-shirt from them. Frankly at very beginning I didn’t see the point to go there, because I started using treadmill right away after my return from hospital. Of course it is different for everybody. Anyway wish you well recovery!

@zargul,
the bill for all tests preceding surgery, surgery and 5 day hospital stay with followed other tests, monitoring, rehab was just below 100 grands.
I was lucky to have insurance which took care about majority of the payment. Hope you’ll find the way to get the treatment. Wish you luck!

For cardiac rehab i was told myectomy doesn’t qualify and only bypass or valve repair. My insurance told me this. Interesting!

@positivity

For cardiac rehab i was told myectomy doesn’t qualify and only bypass or valve repair. My insurance told me this. Interesting!

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I think that it depends on how it is coded, though mine wasn’t covered either. I paid out of pocket for a reduced program.

@positivity

For cardiac rehab i was told myectomy doesn’t qualify and only bypass or valve repair. My insurance told me this. Interesting!

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Does Medicare cover a myectomy Or alcohol ablation? I do have a secondary ins.

@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…

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Hi @vialox, Thank you so much for sharing all the info. That is helpfull.
My husband has HCM and will he having his surgery in 3 weeks. I am freaking out.

Can you suggest things that I should get and do for him so his recovery is easy plz. Or anything you wish you knew before the surgery that would have helped Please..:)

Also how did you and ur family stay positive before the surgery..this is hard to do for me. I am super stressed.

Did anyone have Afib with HCM??

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