1. < Hypertrophic Cardiomyopathy (HCM)

Freaking out a bit - Upcoming surgery!

Posted by badmac @badmac, May 29, 2019

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.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

lvon | @lvon | Mar 18, 2020

Hi I am 71 now and as you I knew as a child something was not right. I am one of the luckiest people, because I had Dr. Barry Marron him self look at my heart. He is the God Father of Drs. Who found this condition. Anyway it has been about fifteen years since my diagnosis and sometimes my heart stops for a brief second and takes off again. I was offered a pace maker by the Mayo but have declined so far. I think for me when it is over it is over. I also am a very active 71 year old. I have a fruit farm horses ,chickens etc. I am greatful for that. My children have been tested for HCM but has not shown up. Be brave and I will be thinking of you!

REPLY
stanleyta | @stanleyta | Jun 10, 2020
In reply to @badmac "Had the cath lab Monday night. its official, I need a myectomy. Now I need to..." + (show)
@badmac

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.

Jump to this post

I am a nurse at Mayo in Florida, my husband was advised to have the surgery at Mayo in Rochester due to their experience there. My husbands is next month.

REPLY
Amanda Burnett | @amandaa | Jun 10, 2020

Welcome to Connect @stanleyta So glad you decided to join. I work at the Florida campus as well and had a previous experience where I was referred to another campus due to expert availability. I love that Mayo recommends the best, even if it's not them. Do you have any concerns about traveling to have your husbands surgery?

REPLY
ahaugland | @ahaugland | Oct 27, 2020
In reply to @bpickartz "Hey Badmac: It is an open heart procedure, at least mine was. I was diagnosed four..." + (show)
@bpickartz

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

Jump to this post

Thanks Bonnie. This is so good to read. I had no idea that I had this and I am 72 and considered healthy. I have had dizziness for years and it was diagnosed as Menieres Disease. Not the Dr. is saying it will be interesting to see if it was heart all this time. Any suggestions on getting an HMO insurance to approve Mayo? Right now they are saying there is a hospital in Iowa City and that is where I need to go.

REPLY
ahaugland | @ahaugland | Oct 27, 2020
In reply to @sheim "I totally can relate to you freaking out. I was officially diagnosed with HOCM in Feb...." + (show)
@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!

Jump to this post

I would love to know about your recovery after surgery. I hope you are still online and are willing to share. Thanks for the information you provided.

REPLY
ahaugland | @ahaugland | Oct 27, 2020
In reply to @bpickartz "My surgery was on a Thursday. I went to the hospital that morning. I was released..." + (show)
@bpickartz

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.

Jump to this post

This is so encouraging. Thank you for posting. Good to know about airbnb as my daughter/ her husband/ and two kids are hoping to go with me. This is all because of Covid. We want to find an airbnb or VRBO. Good to know you went into surgery right after appts. I was worried they would send me home. I am just getting started with this and have so many questions. I honestly had no idea I had this and when I went in to Dr. I said I was out of shape because of Covid. She listened to my murmur and said I wasn't out of shape and it may be my heart. Thank goodness she ordered the Eco. Now I'm just in the preliminary stage of setting up appts (hopefully insurance will cooperate).

REPLY
ahaugland | @ahaugland | Oct 27, 2020
In reply to @reenj62 "@badmac , I can relate to you completely! My story is so the same as yours...." + (show)
@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!

Jump to this post

I would love to hear about how you are feeling now? I have just been diagnosed by my home cardiologist. I only went to her because of pre-op on biopsy and they heard a murmur that was significant. I am 72 and have had good health. Once she explained and asked me some questions, there is no doubt that I have had symptoms all along but just ignored them. I am scared...more because family will be around more people than they have been since March. We have been careful and that makes me nervous. Do you think if we rent an airbnb for 2 weeks we have time covered?

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Oct 29, 2020
In reply to @ahaugland "I would love to hear about how you are feeling now? I have just been diagnosed..." + (show)
@ahaugland

I would love to hear about how you are feeling now? I have just been diagnosed by my home cardiologist. I only went to her because of pre-op on biopsy and they heard a murmur that was significant. I am 72 and have had good health. Once she explained and asked me some questions, there is no doubt that I have had symptoms all along but just ignored them. I am scared...more because family will be around more people than they have been since March. We have been careful and that makes me nervous. Do you think if we rent an airbnb for 2 weeks we have time covered?

Jump to this post

Hello ahaugland,
Welcome to this site. I found it very helpful before I had my septal myectomy and papillary myectomy three months ago at St. Mary's.
I posted on this site (welcome HCMr's) about my experience and what I was surprised about, what I was or was not expecting and what I learned. If you poke around on the Hypertrophy Cardiomyopathy site, you will find a treasure trove of information that may help you. You can learn a lot from the folks on here. I may take some time doing research, but I would encourage you to do as much as you are comfortable learning. I found a YouTube video and watched the procedure...that may be too much for others.
We stayed at the Courtyard Marriott that could not have been more convenient. It is the only hotel that is directly across from the front entrance to the hospital. I investigated airBNB's as well, but my guy wanted the Courtyard. It has a Starbucks in the lobby he liked.
I can only speak of my own experience, but the Mayo Clinic, aside from being the most excellent organization on the planet, is very organized and runs like a machine. I received by mail my list of tests with dates, times, locations. They keep you on schedule and you are very busy the day before surgery. In my case my surgery was scheduled on a Wednesday. Sunday was Covid testing, downtown. They had me scheduled for labs on Monday, but due to Covid and convenience, they did labs and Covid test both on Sunday. Monday was cardiac MRI, Tuesday was Coronary Angiography (Heart Cath) and Wednesday was surgery. We met with Dr. Bagameri and his team late Tuesday afternoon. It is a surreal experience. Just typing this takes me back. I was discharged the following Sunday (five days total) and we flew home on Thursday after a Wednesday Clinic post op visit. I was fine to fly. But you are definitely not able to do things for yourself. After surgery we walked and walked and walked all over the area. There are houses to the right of the hospital. Hotels and houses to the left. There is a really nice market close by, a few blocks...Fresh Thyme for shopping healthy food. And they have wine! Also a McDonalds for weak moments. There are many hotels and restaurants near. And the hospital has a shuttle that runs downtown on a regular schedule. Lots of eating choices there. For families sake, closer to the hospital is better. The weather may be a challenge!
Look around this site. You will find so much help. I was so nervous. But looking back, I had no idea how strong we really are as humans. There is no finer place to have this surgery than Mayo Clinic. The nurses, doctors, housekeeping everyone, are amazing people.

REPLY
ahaugland | @ahaugland | Nov 1, 2020

Thank you so much for taking the time to ease my stress! I posted my first comments and have stayed off just because I was afraid of what I might hear from those of you who have gone through this experience. We are definitely a club I hadn't planned to join! I am not waiting for a battle with insurance! Even though I have very good HMO insurance, it appears Mayo is not in my network even though it is close to same distance as the ONE clinic in the state that treats this! UGH! I have no idea if I will be forced to jump hoops to be able to go to Mayo. I am not the most patient person when it comes to someone else making decisions about my life! Again, thank you for your kindness. I look forward to hearing and reading more.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.