Freaking out a bit - Upcoming surgery!

Posted by badmac @badmac, Wed, May 29 3:36pm

I was officially diagnosed with HCM about 3 years ago, however i have been feeling the symptoms since childhood. I always felt something was wrong, and been to the cardiologist many times and they didn’t find anything until about 8 years ago, a very pronounced murmur appeared and they were looking into what was causing it. They didn’t diagnose me then, however they wanted to keep an eye on the murmur, so every year i get an Echo. 3 years ago they found the HCM, and this year it is now considered obstructed, which i believe is HOCM? My cardiologist said i will need a myectomy. This next monday i am headed to the cath lab for them to take a closer look. Not sure what happens next. I’m freaking out. Been reading other posts, trying to learn more about the surgery and what to expect. Sounds like this is an open heart procedure? I think that scares me most. I am 51 years old. Over the last couple of years i have really slowed down, and get fatigued quickly, chest pain, strange heart beats and sensations. And over the last few years i have been dealing with severe anxieties because of this. I am on a few meds for the HCM as well as other meds for diabetes. Is this an open heart procedure? Thankfully i live in the phoenix area, so there is a mayo clinic here. A few years ago, i never heard of HCM. Up until a week ago, i didn’t know they could surgically treat it. there seems to be lots of peoples stories here with some great information. Some of it is scary and most seems to be positive. Not sure why I am posting, but when i describe this to my family, they don’t seem to understand this is kinda serious. I guess i just needed to relate to someone who understand this.

Liked by reenj62

Hey Badmac:

It is an open heart procedure, at least mine was. I was diagnosed four years ago, but the doctors didn't explain how serious it was until last summer. Mine is genetic and I had a terrible time, fatigue, brain fog, syncope. The cardiologist just didn't offer surgery as a solution, so I didn't know it was an option.

I had a myectomy at Mayo in Rochester in August and wish I'd had it sooner. I feel better than I've felt in 4 or more years, think more clearly, have more energy, don't pass out.

I had a doctor ask me if I had a family member who went to bed and then just didn't wake up. The answer was no, but even with that as her question, she didn't suggest surgery.

Stay strong and know that you'll feel better quickly so you can get on with your life.

I'm 68 and have sons almost your age. They've been checked and don't have it and I'm so glad.

I can't imagine having surgery like this anywhere but a Mayo hospital. I had to travel 10 hours to do it and would do it again.

Onward, Bonnie

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I totally can relate to you freaking out. I was officially diagnosed with HOCM in Feb. I tend not to believe Dr's, especially when they want to give me a medicine I don't want to take ( in this case Disopyramide). I got a second opinion from a dr not connected with the health system I go to. He looked at every test report I took in and was 100% in agreement. He also said he thinks a septal myectomy is in my future but if my dr did suggest it to go NOWHERE but Mayo in Rochester Mn. He actually said don't go to Az or Fl. Maybe he's partial or maybe they really ARE the experts. Find out how many of this surgery Az Mayo does. If it is less than 200 a year I'd consider a trip to Mn. The way he explained it. ….they do between 200-250 a year. The rest of hospitals nation wide COMBINED don't do that many. He said you need more than a dr who knows how to do it…you need a whole team of experts. I'm headed to have mine done next month and while I'm nervous about it, I think I'm doing the right thing. Good luck to you!

Liked by bpickartz

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@sheim

I totally can relate to you freaking out. I was officially diagnosed with HOCM in Feb. I tend not to believe Dr's, especially when they want to give me a medicine I don't want to take ( in this case Disopyramide). I got a second opinion from a dr not connected with the health system I go to. He looked at every test report I took in and was 100% in agreement. He also said he thinks a septal myectomy is in my future but if my dr did suggest it to go NOWHERE but Mayo in Rochester Mn. He actually said don't go to Az or Fl. Maybe he's partial or maybe they really ARE the experts. Find out how many of this surgery Az Mayo does. If it is less than 200 a year I'd consider a trip to Mn. The way he explained it. ….they do between 200-250 a year. The rest of hospitals nation wide COMBINED don't do that many. He said you need more than a dr who knows how to do it…you need a whole team of experts. I'm headed to have mine done next month and while I'm nervous about it, I think I'm doing the right thing. Good luck to you!

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The number of procedures done at Rochester drove my decision. My experience was amazing. I left on the 6th day to go home. Stay in touch and let us know how things go. Onward!

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bpictartz, You went home on the 6th day?! WOW! How long were you actually in the hospital? We had no idea what to expect so we got an Airbnb for 2 weeks. Did you fly? How was going through security? Did you use a wheel chair or able to walk? The closer this gets I think I get more questions in my mind and more doubts of ….am I REALLY so bad? Then I remember what my primary dr said about perfect timing. I just turned 70, My health is good, I work out (tho I get out of breath pretty easy but also recover within a minute or so of stopping). She said if I waited who knows what my heath will be like.

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@sheim

bpictartz, You went home on the 6th day?! WOW! How long were you actually in the hospital? We had no idea what to expect so we got an Airbnb for 2 weeks. Did you fly? How was going through security? Did you use a wheel chair or able to walk? The closer this gets I think I get more questions in my mind and more doubts of ….am I REALLY so bad? Then I remember what my primary dr said about perfect timing. I just turned 70, My health is good, I work out (tho I get out of breath pretty easy but also recover within a minute or so of stopping). She said if I waited who knows what my heath will be like.

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My surgery was on a Thursday. I went to the hospital that morning. I was released the next Thursday morning. I had a little problem with afib, so I they kept me a day longer than anticipated. We got to Mayo on Monday and had three days of tests. My surgeon was Dr. Said. He is amazing.

We rented our Airbnb for 10 days and that worked out. It was about 15 minutes from the hospital, but really nice and nice people, and was inexpensive ($30 a day). The couple who own it, a beautiful restored craftsman home, even came to visit me. We both stayed there before the surgery, then my husband stayed there while I was in the hospital. It cost more to kennel our dog ($35 a day) than for our Airbnb:)

We drove and I didn't use a walker or wheelchair. They'll recommend a walker, I think, so take one with you so you don't have to buy it there. They are pricey at the medical supply companies there.

You'll go to cardiac rehab once you get home, about two or three weeks after surgery. It's really important.

Don't wait. I wish someone had told me to have surgery three years earlier. I'm 68 and have more energy than I've had in several years. I'm 9 months out and feel great.

Liked by sheim

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@badmac , I can relate to you completely! My story is so the same as yours. I was going to cardiologist since my early 20s. Also said I had a heart murmur. Always did testing but never found anything. Finally after my younger brother who is 16 yrs younger then I fell over playing basketball at school,he was 16 then. We discovered we had the genetic for HCM. My brother did survive. Which they say was nothing but a miracle after being in a comma for weeks. Long story short, since then I have been on many medications for HCM that seemed to be controlled very well untill about 4 yrs ago things started to change and it was like the medications were no longer working. I started having many symptoms from severe fatigue, strange heart palpitations, very bad head fog, dizzy like being drunk & I don't drink lol, to passing out a few times. My anxiety has no doubt become worse also. I had testing done all day on may 31st at Mayo MN. Today is Sunday June 2 and as I lay here crying this morning writing this I am having severe anxiety for my myectomy tomorrow! I thinks it's all the what is thoughts going through my head and I feel scared also wondering if I'm doing the right thing. I just turned 57 and even considered leaving the hotel and going home last night. Lol. Thank goodness for my family here with me or I may have been gone. But I read everyone's post's and it does help relax me. I've decided to stay and will call tonight for my surgery time tomorrow! They say I am in the best hands with Dr Shaff. So yes I am freaking out but I'm gonna try to stay positive and believe this is the right thing to do. Blessings and much luck to you!

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This board is a very good thing just for support and encouragement. So glad I found it. It'd be nice if we could acually have emails as well. Reenj62, getting this done at 57 is a GOOD THING…just think how many years you will now have feeling better than you even thought you could. Awhile back I had some tests done for vertigo since I was getting it a lot and found that NOPE I don't have it. NOW since finding I have HOCM I find out THAT is why I was getting dizzy. I've never passed out but felt like it a lot…blamed it on low blood pressure even tho I take medicine for high blood pressure. I too have Dr Shaff! You had ONE DAY of testing? Gee…they spread me out through 3 days. 2 I guess..the day before surgery is meeting with dr's. Yeah, still nervous…still even a bit scared but almost looking forward to it. You got this (well your dr's do. 🙂 Blessings to you!

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@reenj62

@badmac , I can relate to you completely! My story is so the same as yours. I was going to cardiologist since my early 20s. Also said I had a heart murmur. Always did testing but never found anything. Finally after my younger brother who is 16 yrs younger then I fell over playing basketball at school,he was 16 then. We discovered we had the genetic for HCM. My brother did survive. Which they say was nothing but a miracle after being in a comma for weeks. Long story short, since then I have been on many medications for HCM that seemed to be controlled very well untill about 4 yrs ago things started to change and it was like the medications were no longer working. I started having many symptoms from severe fatigue, strange heart palpitations, very bad head fog, dizzy like being drunk & I don't drink lol, to passing out a few times. My anxiety has no doubt become worse also. I had testing done all day on may 31st at Mayo MN. Today is Sunday June 2 and as I lay here crying this morning writing this I am having severe anxiety for my myectomy tomorrow! I thinks it's all the what is thoughts going through my head and I feel scared also wondering if I'm doing the right thing. I just turned 57 and even considered leaving the hotel and going home last night. Lol. Thank goodness for my family here with me or I may have been gone. But I read everyone's post's and it does help relax me. I've decided to stay and will call tonight for my surgery time tomorrow! They say I am in the best hands with Dr Shaff. So yes I am freaking out but I'm gonna try to stay positive and believe this is the right thing to do. Blessings and much luck to you!

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Reeng62, you will be so glad you did it. Mine was 10 months ago and I feel like I've been given a normal life again. Dr. Schaff is an amazing surgeon (cardiologists in TX who look at my heart now say they rarely see a post-myectomy septum that is so even). Put your trust in the team there…. It's going to be fine…. Better than fine!

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@sheim

This board is a very good thing just for support and encouragement. So glad I found it. It'd be nice if we could acually have emails as well. Reenj62, getting this done at 57 is a GOOD THING…just think how many years you will now have feeling better than you even thought you could. Awhile back I had some tests done for vertigo since I was getting it a lot and found that NOPE I don't have it. NOW since finding I have HOCM I find out THAT is why I was getting dizzy. I've never passed out but felt like it a lot…blamed it on low blood pressure even tho I take medicine for high blood pressure. I too have Dr Shaff! You had ONE DAY of testing? Gee…they spread me out through 3 days. 2 I guess..the day before surgery is meeting with dr's. Yeah, still nervous…still even a bit scared but almost looking forward to it. You got this (well your dr's do. 🙂 Blessings to you!

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@sheim ..Thank you so much. I have to be there in 5 hours and it's hard to sleep. I appreciate your support and the support of everyone on here. Thank you and blessings to you also!!

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@markjones

Reeng62, you will be so glad you did it. Mine was 10 months ago and I feel like I've been given a normal life again. Dr. Schaff is an amazing surgeon (cardiologists in TX who look at my heart now say they rarely see a post-myectomy septum that is so even). Put your trust in the team there…. It's going to be fine…. Better than fine!

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@markjones so glad to hear you are doing so well. Thank you for the encouragement. 5 hours and counting.

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My husband had HOCM and five blockages. He had his surgery nine months ago today, and I can’t begin to tell you the difference. The first two months he felt very little difference and questioned everything he went thru. Now, he would do it again knowing how great he feels. A year ago he was exhausted just coming in from the driveway. Mayo is the best for this condition, surgery. The staff is so fabulous I can’t rave enough about them. Get it done and move on with life.

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Had mine on Jan 30th along with a mitral valve repair You will be fine Your got this Good Luck

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Had the cath lab Monday night. its official, I need a myectomy. Now I need to find a surgeon here in AZ. My cardiologist is checking. Any recommendations? I am hoping the Mayo has a specialist here in AZ.

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My husband went to mayo Rochester because if the number of surgeries they perform.

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Badmac….if there is any way you can go to Rochester Mn that is where you should go. A Cardiologist here told me if I were his patient (went to him as a second opinion) he would send me there. He went so far as to say Not Florida, Not Az…ONLY Mn. THEY are the experts. You COULD check with the Az Mayo and ask how many of the Myectomys they do a year. If it's over 200 you are probably good.

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