Advice for upcoming myectomy?

Posted by ginabassford @ginabassford, May 12 12:01pm

I am scheduled for an extended myectomy with Dr. Dearani in Rochester on July 15. Our flights and hotel are booked. Does anyone have advice on how I can prepare? Any helpful tips for before or after surgery? Anything I need to make sure to take with me?

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Profile picture for brumasterj @brumasterj

Tomorrow i will be 1 week away feom having septal myectomy!
I have done my best not to let my mind race away with thoughts! Tomorrow will be my ladt day of work while i prepare and recover from surgery!
So i guess its all been starting to effect my thoughts aome!
I look at my wife and kids differently, my drives up to durango colorado for work are just reflecting on all the beautiful scenery i get to see on the drive!
I have found my self this week preparing passwords and financial data for my wife just in case and even have contemplated making a video for her and all my family and friends????
Normal???? It sure doesnt feel normal!!!!
Im pretty dang healthy physically and mentally just this dang HCM has held me back!

Will these thoughts ease???
I sure hope so:)

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You describe what many of us thought leading up to the big day! You are so well prepared, remember, this is a big deal surgery, you would be abnormal without these (terrifying?) thoughts. The thoughts will ease when you wake up from surgery! Your wife will be at your side. I woke up and realized it was over! It was 4 hours after it was over. I wrote messages in my hubby's hand - the nurse rushed over with pencil and pad before I fell back to sleep. "I have found my self this week preparing passwords and financial data for my wife just in case and even have contemplated making a video for her and all my family and friends????" Yup! I prepared for the worse, too, you'd be negligent if you did not. Do you geocache? We did that between appointments. Does your wife like to walk? Parks and Pill Hill (the area where many doctors live) were interesting. My husband explored Rochester for mental therapy. The Mayo campus has many pretty gardens with historic/informative signs. Look for the historic doors. The Carillion. Find things you like to do to help rest your mind and impress upon your wife to take good care of herself, that will help in YOUR recovery.

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Thank you!
Yes we like geocaching and walking the river trail here at home:)
Thanks you again for the encouraging words and all the great information you have provided:)

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Profile picture for walkinggirl @walkinggirl

@mbi, your walking is a great way to work on staying in your best shape leading up to surgery! Keep up the good intentions! If there is a mall nearby, consider walking there when weather is uncomfortable. May I also suggest core strengthening exercises - ask your doctor first - such as planks and bridges? I just found this link! https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/core-strength/art-20546851 I found that the PT and OT challenges were easy to do because I went to the gym and walked very regularly - the main difficulty were the machines hooked up to me. I was annoyed at the slow speed at which these activities were completed, should not have been - I just had a septal myectomy! As far as how long to stay in Rochester, EVERYONE IS DIFFERENT. I was home (we drove from north of Albany NY), a week after surgery, many others were uncomfortable leaving the area so soon or were not feeling up to traveling. See how you feel after discharge instructions and actual discharge.

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Thanks for the info!

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Profile picture for brumasterj @brumasterj

Tomorrow i will be 1 week away feom having septal myectomy!
I have done my best not to let my mind race away with thoughts! Tomorrow will be my ladt day of work while i prepare and recover from surgery!
So i guess its all been starting to effect my thoughts aome!
I look at my wife and kids differently, my drives up to durango colorado for work are just reflecting on all the beautiful scenery i get to see on the drive!
I have found my self this week preparing passwords and financial data for my wife just in case and even have contemplated making a video for her and all my family and friends????
Normal???? It sure doesnt feel normal!!!!
Im pretty dang healthy physically and mentally just this dang HCM has held me back!

Will these thoughts ease???
I sure hope so:)

Jump to this post

@brumasterj While I sure cannot answer your questions about what to do, I believe that you are putting yourself in the very best hands in the world. You will be on the other side of this very soon, and I am really hoping you will come back here to share how everything goes. My surgery is in 32 days, and I am experiencing many of your same thoughts. I have asked my family to keep a journal of what I am going through each day from their perspective. They think I am crazy, but when I get to the other side of it, I want to know what happened because I won’t remember or have been aware! One finds strength as they realize what they got through. I believe you are going to be so thankful you did this! I also believe everything you are going through is normal.

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Profile picture for ginabassford @ginabassford

@brumasterj While I sure cannot answer your questions about what to do, I believe that you are putting yourself in the very best hands in the world. You will be on the other side of this very soon, and I am really hoping you will come back here to share how everything goes. My surgery is in 32 days, and I am experiencing many of your same thoughts. I have asked my family to keep a journal of what I am going through each day from their perspective. They think I am crazy, but when I get to the other side of it, I want to know what happened because I won’t remember or have been aware! One finds strength as they realize what they got through. I believe you are going to be so thankful you did this! I also believe everything you are going through is normal.

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Thank You
Lots better today for sure as far as thoughts!
I will be back on here after my surgery for updates.
Good luck to you as well!
These next few weeks will fly by for you

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Profile picture for brumasterj @brumasterj

Tomorrow i will be 1 week away feom having septal myectomy!
I have done my best not to let my mind race away with thoughts! Tomorrow will be my ladt day of work while i prepare and recover from surgery!
So i guess its all been starting to effect my thoughts aome!
I look at my wife and kids differently, my drives up to durango colorado for work are just reflecting on all the beautiful scenery i get to see on the drive!
I have found my self this week preparing passwords and financial data for my wife just in case and even have contemplated making a video for her and all my family and friends????
Normal???? It sure doesnt feel normal!!!!
Im pretty dang healthy physically and mentally just this dang HCM has held me back!

Will these thoughts ease???
I sure hope so:)

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Hi @brumasterj ,
How are you?
I’ve been thinking about you and said prayers before your surgery…

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Profile picture for Debra, Volunteer Mentor @karukgirl

Hi @brumasterj ,
How are you?
I’ve been thinking about you and said prayers before your surgery…

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Been a long few days pain has been bearable but the motion sickness ughhh!
First night after surgery zero sleep awake every 1-3 minutes moved off icu the next day and i felt like i was palying a virtual video game when closing eyes!
The lasix keeps you going to the bathroom all night and day every 30-60 mnutes
I was afraid they was releasing me too early yeaterday because i was so sick feeling went to hotel again up every 30-60 minutes
I did not take my lasix today and its been such a relief as the day has gone on my motion sickness is better im on tylenol every 6 hours
The hospital staff was amazing
First few days its hard to catch breath because of chest tubes made a huge differwnce once thise came out!
Dr Dearani assured me i made the right choice:)
Thank you for all the thoughts and prayers

REPLY
Profile picture for brumasterj @brumasterj

Been a long few days pain has been bearable but the motion sickness ughhh!
First night after surgery zero sleep awake every 1-3 minutes moved off icu the next day and i felt like i was palying a virtual video game when closing eyes!
The lasix keeps you going to the bathroom all night and day every 30-60 mnutes
I was afraid they was releasing me too early yeaterday because i was so sick feeling went to hotel again up every 30-60 minutes
I did not take my lasix today and its been such a relief as the day has gone on my motion sickness is better im on tylenol every 6 hours
The hospital staff was amazing
First few days its hard to catch breath because of chest tubes made a huge differwnce once thise came out!
Dr Dearani assured me i made the right choice:)
Thank you for all the thoughts and prayers

Jump to this post

Thankfully you are on the other side of this surgery now and have healing ahead.
I can relate to much of your post...and promise it gets better each day. I remember so well the days the chest tubes came out. It was like freedom!
Be careful and listen to your body. You know you better than anyone. Walk as much as you can. Eat healthy. Take your meds as prescribed. If you are tired, take a nap.
It's amazing how wonderfully we are made and how each day the healing process allows you to do a little more than the day before.
You've been such a great inspiration in the HCM group. From Camzyos to Septal Myectomy with a great attitude.
Hang in there! It gets better...

REPLY
Profile picture for brumasterj @brumasterj

Been a long few days pain has been bearable but the motion sickness ughhh!
First night after surgery zero sleep awake every 1-3 minutes moved off icu the next day and i felt like i was palying a virtual video game when closing eyes!
The lasix keeps you going to the bathroom all night and day every 30-60 mnutes
I was afraid they was releasing me too early yeaterday because i was so sick feeling went to hotel again up every 30-60 minutes
I did not take my lasix today and its been such a relief as the day has gone on my motion sickness is better im on tylenol every 6 hours
The hospital staff was amazing
First few days its hard to catch breath because of chest tubes made a huge differwnce once thise came out!
Dr Dearani assured me i made the right choice:)
Thank you for all the thoughts and prayers

Jump to this post

I am so glad you posted, and you are on the other side of all of this and making progress! It is amazing how each of us had a different experience and each of us is absolutely determined to put it all in perspective. One day at a time, this was a big deal surgery. Motion sickness was a new one to read about. Yes "The hospital staff was amazing." "Dr Dearani assured me I made the right choice:)" Just today I was talking to a friend who recently had a knee replacement. I suggested that she compare today with a week ago. Day to day has ups and downs but one can see a difference from week to week. It takes much physical, mental and emotional energy as progress is made. Keep us posted!

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Profile picture for Debra, Volunteer Mentor @karukgirl

Thankfully you are on the other side of this surgery now and have healing ahead.
I can relate to much of your post...and promise it gets better each day. I remember so well the days the chest tubes came out. It was like freedom!
Be careful and listen to your body. You know you better than anyone. Walk as much as you can. Eat healthy. Take your meds as prescribed. If you are tired, take a nap.
It's amazing how wonderfully we are made and how each day the healing process allows you to do a little more than the day before.
You've been such a great inspiration in the HCM group. From Camzyos to Septal Myectomy with a great attitude.
Hang in there! It gets better...

Jump to this post

Thank you all again if anyone reads these post we found a local pizza place where the pizza is amazing but the staff made us return 3 times they were so supportive after we popped in 6 days after surgery!
PASQUALE'S

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