quinn
@quinn
@quinn
Posts: 3
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Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2227
Joined: Oct 09, 2016
Hi @nightlite8,
I merged your post about fluid in lungs after myectomy in to this discussion on "What is the recovery like following septal myectomy?" so that you could reconnect with the members who joined this discussion.
I saw that you had posted about your husband's progress after septal myectomy, earlier this year; are you concerned that he may have fluid in the lungs? May I ask if has any symptoms?
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2227
Joined: Oct 09, 2016
Hello @bariemma,
Welcome to Connect. You may notice that I moved your message and combined it with this existing discussion on septal myectomy recovery. I did this so that you can easily connect with other members who've discussed similar experiences.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
I'd like to introduce you to a few members – @lynnkay1956 @vivian88 @mbcube @ronaldpetrovich @wintergirl8 and Mentor @cynaburst – to see if they can help answer you concerns.
@bariemma, while we wait for others to respond, can you tell me a bit more about your pain? When did you notice the painful symptoms? Have your doctors suggested what might be the cause?
I called Dr. Shaft's office and his PA said it sounded like Dressler's (chronic inflammation) because I did not have the pain until about 3 weeks post op. My local dr. in Florida did the blood test to confirm this and it was negative. He tried a regimen of steroids but I still have the pain some nights worse than others. At this point, my local doctor said it is all part of the healing process. I am reaching out to see anyone else has had this experience. The pain is the worst when I lay down on my left side. It hurts in my heart and goes around to the start of my back. Not sure if it the lung area or the back of the heart.
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
@bariemma I called Dr. Shaft's office and his PA said it sounded like Dressler's (chronic inflammation) because I did not have the pain until about 3 weeks post op. My local dr. in Florida did the blood test to confirm this and it was negative. He tried a regimen of steroids but I still have the pain some nights worse than others. At this point, my local doctor said it is all part of the healing process. I am reaching out to see anyone else has had this experience. The pain is the worst when I lay down on my left side. It hurts in my heart and goes around to the start of my back. Not sure if it the lung area or the back of the heart.
I have heard of people getting pericarditis following surgery which caused them pain. Could that be the issue?
sankarpinaki
@sankarpinaki
@sankarpinaki
Posts: 19
Joined: Feb 22, 2018
Hi i'm on dilitazem, ranolazine, trimetadizine, clopidogrel, atorvastatin with sertaline, clonazepam andimipramine for anxiety panick attack. Still my chest pain with chest discomfort is on though my bp and pulse rate is normal with recent eco EF showing 65%.can you tell me why I am not relieved of pain. I have AHCM with septal thickness of 16mm and apical thickness of 21mm. No gradient at rest
Eagerly waiting for a positive reply.
melthomas
@melthomas
@melthomas
Posts: 4
Joined: Nov 04, 2018
I am scheduled for surgery on January 31, 2019. I'm so nervous about it! Can anyone tell me if there are things I can do ahead of time to make the recovery any easier? Also, do you remember waking up on the ventilator? I'm already having nightmares about it. Everyone here seems so positive and helpful. I am terrified. Thank you in advance for any tips and information.
Lisa Lucier, Connect Moderator
@lisalucier
@lisalucier
Posts: 2539
Joined: May 10, 2017
@melthomas I am scheduled for surgery on January 31, 2019. I'm so nervous about it! Can anyone tell me if there are things I can do ahead of time to make the recovery any easier? Also, do you remember waking up on the ventilator? I'm already having nightmares about it. Everyone here seems so positive and helpful. I am terrified. Thank you in advance for any tips and information.
Hi, @melthomas, and welcome to Mayo Clinic Connect. I noted you said you were diagnosed with HCM in October of 2017 and are now preparing for surgery in January. I trust you will find you have come to a good place to speak with others with HCM and who have undergone surgery to get some input prior to yours about what might make recovery easier, memories of waking up on the ventilator, or other tips and information.
Hoping that members like @cynaburst @mbcube @bariemma @ronaldpetrovich @samatoz @jh56 in this discussion will have some thoughts for you.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
You mentioned having nightmares about waking up on the ventilator, and feeling terrified. What other factors are making you feel terrified as you approach your surgery, @melthomas?
Liked by melthomas
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
@melthomas I am scheduled for surgery on January 31, 2019. I'm so nervous about it! Can anyone tell me if there are things I can do ahead of time to make the recovery any easier? Also, do you remember waking up on the ventilator? I'm already having nightmares about it. Everyone here seems so positive and helpful. I am terrified. Thank you in advance for any tips and information.
Hi @melthomas. I had a myectomy over 12 years ago and I was also very concerned about waking up on the ventilator. It turned out to be a non-event. I woke up and wrote notes to the nurse, and then they removed it pretty much immediately after I woke up. As far as preparing, the best thing you can do is to stay in shape. Try to walk every day, if you can. I have two resources to share with you as well. I have a blog about HCM and I have a page to help people prepare for myectomy: https://hcmbeat.com/resources/resources-for-patients-about-myectomy/. Also, I wrote a blog about my experience about my own myectomy: http://www.cynthiassummeradventure.blogspot.com
Wishing you the best. If you are having surgery at Mayo you are in the best hands.
Liked by Lisa Lucier, Connect Moderator, melthomas
falconfly
@falconfly
@falconfly
Posts: 42
Joined: Nov 23, 2016
@cynaburst Hi @melthomas. I had a myectomy over 12 years ago and I was also very concerned about waking up on the ventilator. It turned out to be a non-event. I woke up and wrote notes to the nurse, and then they removed it pretty much immediately after I woke up. As far as preparing, the best thing you can do is to stay in shape. Try to walk every day, if you can. I have two resources to share with you as well. I have a blog about HCM and I have a page to help people prepare for myectomy: https://hcmbeat.com/resources/resources-for-patients-about-myectomy/. Also, I wrote a blog about my experience about my own myectomy: http://www.cynthiassummeradventure.blogspot.com
Wishing you the best. If you are having surgery at Mayo you are in the best hands.
Wow. You are a very inspiring young lady!
melthomas
@melthomas
@melthomas
Posts: 4
Joined: Nov 04, 2018
@lisalucier Hi, @melthomas, and welcome to Mayo Clinic Connect. I noted you said you were diagnosed with HCM in October of 2017 and are now preparing for surgery in January. I trust you will find you have come to a good place to speak with others with HCM and who have undergone surgery to get some input prior to yours about what might make recovery easier, memories of waking up on the ventilator, or other tips and information.
Hoping that members like @cynaburst @mbcube @bariemma @ronaldpetrovich @samatoz @jh56 in this discussion will have some thoughts for you.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
You mentioned having nightmares about waking up on the ventilator, and feeling terrified. What other factors are making you feel terrified as you approach your surgery, @melthomas?
I'm afraid of the surgery. I'm trying not to be. I know that I will be in the best hands. I just don't want to end up being the bad side of the statistic.
melthomas
@melthomas
@melthomas
Posts: 4
Joined: Nov 04, 2018
@cynaburst Hi @melthomas. I had a myectomy over 12 years ago and I was also very concerned about waking up on the ventilator. It turned out to be a non-event. I woke up and wrote notes to the nurse, and then they removed it pretty much immediately after I woke up. As far as preparing, the best thing you can do is to stay in shape. Try to walk every day, if you can. I have two resources to share with you as well. I have a blog about HCM and I have a page to help people prepare for myectomy: https://hcmbeat.com/resources/resources-for-patients-about-myectomy/. Also, I wrote a blog about my experience about my own myectomy: http://www.cynthiassummeradventure.blogspot.com
Wishing you the best. If you are having surgery at Mayo you are in the best hands.
Thank you for telling me it was a non-event for you. I have been so afraid of it. I'm trying so hard to be positive. I have 4 kids and a husband who need me. And I'm only 40…..it's just all of the what ifs.
Liked by Lisa Lucier, Connect Moderator, sasilla
mbcube
@mbcube
@mbcube
Posts: 28
Joined: Oct 25, 2016
Normal to be nervous. Fully understand. Having 20+ operations myself, the one thing I've learned is trust that you are in good hands – and there is no better place than Mayo. Listen to what they say, follow directions, ask questions. I find the more you know what to expect, the less "surprises" you get. I suspect you'll be posting afterwards – "easy peasy"
Liked by melthomas
sasilla
@sasilla
@sasilla
Posts: 1
Joined: Jan 02, 2019
@lamborama 2:30 AM – 7 days post surgery
Colleen and the group – thanks for your prayers, thoughts, and support. I am just back home (5PM, Monday, Nov 7) after having surgery Tuesday morning, November 1 at Mayo Rochester. From everything I have heard, read, and experienced – it sounds like it was a rousing success! Everything the nurses have said to me is that I am on the front end of any of the recovery charts. I do feel better now (7 days post surgery) than I was before the surgery. I am hurting but also healing and feeling pretty good. I went into ICU after Surgery, starting walking the next day and day 3 I moved out of ICU to a ward on floor 5 and was able to walk there with my family and the nurses carrying my stuff! I walked a lot which helped with the chest congestion, lung expansion, and just getting the body woken up in general. I got all my final drain tubes and connections off by Saturday AM so that by Saturday and suppertime we had moved out of the hospital into a hotel across the street and walked over to supper at a nearby restaurant. By the time I got back to my hotel room I was whipped. I will write more shortly – but wanted to say that info I found here helped me to keep a great attitude, appreciation for the nurses, doctors, and staff which made an extremely quick recovery so far.
I am pooped right now – I just got about 3 hours of sleep in and was waiting for the next pain med window before trying to go back for a little more sleep.
Encouragement for recovery:
Listen and respond positively to the work the Drs, nurses, staff give you. Get daily goals and work until they are done before giving up for the day
Get up and walking as much and as soon as you can
Try to get your body waken up by starting to eat and drink what you can
Wean off big pain meds when you can – but not before you need it! Pain is an indication of healing as well You need to heal and pain meds help
Keep positive! Nobody likes a downer – and the stories everyone has can get overwhelming – focus on the positive aspects of each day
Get happy people to visit you and get you to start laughing!
All for now. Thanks for the great group.
Dave @lamborama
Hi Dave i am heading for surgery at Tufts March 19, 2019 and i was wondering how you are doing now that you are recovered? I won't lie i'm scared but i know i have to have this done i can't breath and i'm only 62, Thanks for any input you can give me. Priscilla
@nightlite8
Has anyone else had fluid in their lungs several months after the procedure?