Stabilization of medications post Septum, Apical Myectomy

What you are going through is the similar as me. I had a Septum Myectomy last Feb at the Cleveland Clinic(CC) and had a similar experience as you post op. FYI I went to CC because it was more convenient for me having family there for support. I also dealt with Afib and left bundle block post surgery and it ended up being difficult to control my BP. It was either too high or too low. My intention was to go back to CC for my after care, but with Covid and being from a small town in southern Indiana, I had to get follow up help locally. After months of out of control BP and not much help from my local doctors, I found an experienced Heart Failure doctor only 2 hours away and have been under her care since July. What a difference! It is very important to get help from doctors who are experienced with HCM and post surgery treatment. With a very methodical approach, my doctor has balanced my medications to where I feel much better. Good luck and I am happy to share more if needed. It just takes time for your body to heal and adjust to your newly reconfigured heart.

Hi. Thank you for your response. I love hearing from everyone and have learned alot from this site. It's wonderful. I had both, apical and septum myectomy, plus pulmonary vein isolation for afib and amputation of left atrial appendage at end of July 22 this year. 6 days later had ICD placed one day before being discharged from Mayo's in Rochester, MN. My family drove me back home to Illinois 6 5 hours away from Mayo's. I was seeing a hypertensive doctor in Peoria plus a cardiologist before surgery. I saw a new cardiologist two weeks ago, a Heart Failure doctor and he had some ideas for changing my meds, he said I could feel much better if my bp was lower but didn't want to change them till I went to the bp doctor in a couple of days. The hypertensive Dr started me on Norvasc 5 mg and the next day I had no balance after all those weeks progressing,, from walker to cane, to no cane and getting my stride back and feeling better. Dr dropped dose to half dose on Friday and by Sunday night I felt like before my surgery with same symptoms( not quite that bad but close). Dr discontinued Norvasc and increased the dose to double and a few days later I went to ED with uncontrollable BP, heart rate and EKG showing Left Bundle Block. They thought I was having a heart attack in ED. I didn't. My heart called down a bit, was admitted to be monitored. Cardiology at hospital increased my morning dose of Metoprolol, decreased Lisinopril in half and kept Cardizem same dose as when dc'd from Mayo's.
Never on any scheduled meds til January 14 when went to ER for excellerated hypertension, is what they said. Admitted, started on Low dose of metoprolol and two weeks later back at hospital for same thing. Last visit to hospital before January was 26 years ago when I delivered my daughter. Several trips to ER, admissions in Jan, Feb this year they ordered Cardiac MRI and dx'd me with HOCM and referred me to Mayo Clinic in Rochester, MN.
Before and after my surgery, while recovering I read posts from this site for encouragement. I kept marking the weeks post surgery on my calendar and how I might possibly feel at this week, that week, and I worked hard on my physical therapy. Started driving again after 8 months of not driving because of afib, symptoms of HOCM, lightheadedness, dizzy. Feeling good again.
I was hoping that someone that had similar experience would comment. Thank you for posting. If you wouldn't mind telling me more of how you felt when the meds were not right after your surgery and what your new doctor did to change your medications. How long did it take for your heart failure doctor to adjust your meds, how many different dosages and medication switches did it take before finding the right combination? How long did it take? How do you feel now? Did the Dr say why it took so long for you to get on the right meds?
Lots of questions. Whatever you'd like to share would be great. Thanks.

I have been working with my new heart failure doctor since July to adjust my meds. What I have found out is that everyone is quite different and reacts to heart meds very differently. The doctor needs to figure out the right mix to meet your needs and life style. It is quite a long road to figure it all out but it can be done. I feel my doctor has gone about it like an investigator. We have tried different doses of different meds and I report back to my doctor about every 10-14 days through the patient portal to see how it is going. If an adjustment is needed, she does it. The doctor also looks at one's lifestyle and basic metabolism. I am pretty active, live on a farm, and work outside quite a bit. For me, we don't want my BP to go too low which can also happen. When it does, I feel worst. I am trying to keep my top number around 125-130 so I have more energy. I cannot comment on what meds or dosages I take since it is so different for everyone. I am 8 months out of open heart surgery and still feel that I am in recovery mode. I exercise by either taking walks or working out on my treadmill at home besides doing the work around the farm. I have to pace myself and make sure to take lots of breaks. I feel my life from now on will be a series of medication adjustments and good communication with my cardiologist and GP. Stay safe and I am happy to communicate more. Hang in there. It will all be ok.

Thanks for your honesty. I have read alot of posts. Everybody's recovery is their own story and we are all different and like you said have different lifestyles and metabolisms. I have read some never used a walker after surgery, and others had pain for a couple of weeks and went to rehab two to three weeks after surgery. I used a walker then cane, still not in Cardiac rehab three months out because of side effects from meds,feeling dizzy, and some med combinations sent me to ER, admitted to hospital, walk like I'm drunk. I have hope eventually it will all be fine but getting there is just going to take more time. I think accepting that this is my life now, living with HOCM, now just HCM, well I miss my old life. I never had symptoms til January of this year, took persistance in telling my doctors there is something wrong with me. Tried to explain how I felt but they only thought it was hypertension and would increase my blood pressure meds. I didn't give up pressing for more testing till finally someone listened and ordered a Cardiac MRI and then came the diagnosis. Medications did not relieve me of my symptoms. Post surgery I thought I was on the mend but again medications keep getting adjusted, side effects are really keeping me in neutral. I'm going forward though and not giving up my dream to be someday looking back and take what I've experienced through all of this and help those who are just starting this journey. Wow, work on a farm, that's hard work. The best to you in your continuing recovery!!!

It struck me about your comments about being persistent with your doctors about feeling something was not right. That happened to me. For 5 years from my local cardiologist, I was told every thing would ok and nothing would come from it. Well surprise, it did and after finding the right heart failure doctor, it all came together. We must all be our own advocates and keep pushing until we get answers. You paying attention worked well for you. Keep on it.

I had never had a serious illness, never been on any prescribed medications daily with the exception of antibiotics, Tylenol for headache. One day totally functional, mech day Sent from prompt care to ER and don't stop home to pick up belongings, etc. Admitted Sent home on low dose metoprolol with diagnosis of hypertension. Back in two weeks to ER, same thing and with doctors saying they thought I was anxious and experiencing anxiety. Increased meds, back again. Finally went to cardiologist, she said, "This is not anxiety, it is your heart. Ordered MRI, bingo. Same day referral sent to Mayo Clinic Cardiologist. Tried meds first but not able to get bp, heart rate under control. COVID hit, surgery postponed til Mayo's restrictions lifted. Which in my case was end of July this year. I was getting reputation in ER for having anxiety before being diagnosed with HOCM. Spent many hours in ER waiting room watching other patients with sprained wrists and chronic elbow pain taken before I would be examined because I was low man on totem pole because she is just anxious. Knowing myself and I'd self care before I'd go to doctors office or hospital for medical care. Doctors are not looking for HOCM in the ER. Hyprtension, yes. Diabetes, yes. Kidney problems yes. Pneumonia, again yes. Only a few doctors took an interest to dig deeper, look further, and seek answers. Another Dr told me I reviewed your Cardiac MRI and why didn't someone find this sooner. "We all learned about HOCM in our first year in medical school". I never doubted myself, I knew if I stay persistent someone will listen. And thank goodness I did. I wonder how many get misdiagnosed when present with symptoms of HOCM? Hoping more doctors become more aware of patients that come to ED with not so obvious diagnosis' and listen to the possibility, the patient knows their own body better than anyone!