Considering different scenarios and wondering if somebody did it alone without family members or friends? What would be the hardest in such situation? Thanks!
Yes, @vialox – not sure how far you would be travelling, but you would not be able to drive for a month or so after surgery so you will need someone to help you get from one place to the next. I have heard of some people traveling by themselves to get to Mayo, but it is not easy. I also chose to stay in Rochester for a few days after my surgery and needed my husband to help me get to the hotel after surgery, go to the store for me, and help me through the airport (though I did get a wheelchair from the airline). Once you get home, you would be ok living alone, but would probably need someone to drive to run errands for you – drugstore, grocery, etc. at least until you are less sore. These days they do have Uber and such, which could help drive you places, but you should probably work all that out in advance. Maybe you have a friend who is willing to help just for a day or two. I actually flew to Rochester alone and underwent tests by myself, and my husband came just in time for surgery. You would only really need someone when you were being discharged.
Considering different scenarios and wondering if somebody did it alone without family members or friends? What would be the hardest in such situation? Thanks!
Considering different scenarios and wondering if somebody did it alone without family members or friends? What would be the hardest in such situation? Thanks!
I was diagnosed with HCM in “2001”, diagnosed with HOCM in “2010”, diagnosed with HOCM with MVO in “2013”. So my disease progressed and changed over time. One day a couple months back my heart suddenly stopped responding well to medications, and I almost died. I had to spend three days in the hospital. It was on my hospital bed that I made calls and tried to find answers. I had one of the top HCM centers again tell me I need a heart transplant and to start the process. Before that I didn’t notice how bad my disease was except for the arrhythmias or really bad days. On bad days I would have shortness of breath, arrhythmias, vision changes to the point of not being able to see sometimes, kidney pain, headaches that made me sick, swelling off and on in my stomach, severe chest and back pain, loss of blood circulation in parts of my body, lightheadedness, and presyncope. Also I was always cold. Sometimes to a point that made me scared because even a hot bath didn’t help much. I had a heated blanket I used on my bed in June and July if that paints a good picture. Heat blasted in the car on hot days in the middle of summer that would be awful for the rest of the family. Funny because right after surgery all I wanted was ice packs. I am now wearing shorts which used to be unheard of for me. So all these symptoms happened until like I said, I suddenly got really bad about two months ago. Then my blood pressure and heart rate were all over the place in addition to the above symptoms I mentioned. Blood pressure was either really high or dangerously low. Heart rate was out of control. Every day was a bad day. Painful exhaustion was almost an every moment occurrence. I just had such a hard time functioning. I did actually work right up till the day of my heart surgery. I was so stubborn. Every day though, after I was told I would be seen by Mayo and they scheduled my operation, I didn’t think I would live till surgery. It was only two weeks at that point away, and I just felt like death (the only way to describe it) honestly. I prayed everyday, and thanked God every morning I woke up. After my surgery, I started work 3 weeks exactly post op. My husband did have to drive me to work because I couldn’t drive for a whole week after I started back up. I didn’t work my normal schedule of so many hours. I eased my way back into it. Remember, I am not like most though, and really you should follow what your doctor tells you. I will say I have hope for the future and I am very grateful for my surgery. I had to fight to get care, and information. There was no time for a heart transplant so if I had not found a friend out of our country to point me to Mayo, I would be dead today. No doubt about it. As soon as I am a bit better, I will be giving back and helping those like us that need it. I think it is sad I didn’t have the resources to point me to Mayo and the surgeon I had within the whole network of people I knew. I am very educated about this heart condition and a bit of a fighter so I cannot imagine someone that has just given up or doesn’t want to be educated and leaves it all up to their doctors. I also am very blessed to have two doctors here that respect and care so much about me. Even they didn’t know such an operation was possible so they left my care up to higher volume centers of excellence and their recommendations. Because of everything, I have had several that have approached me about doing a story about what I went through, and the recovery after such a serious and unique operation. I think you are asking all the right questions, and you will be in good care at Mayo. I hope you keep me updated on your recovery.
@cynaburst, @wintergirl8,
thank you for your stories, – really really appreciate it. I haven’t had such long experience with symptoms. HOCM turned on suddenly last year, and forced making life adjustment. Without the boards like that I would just thinking that it was aging… It’s good to know that there is chance to “extend lease” for a while.
Considering different scenarios and wondering if somebody did it alone without family members or friends? What would be the hardest in such situation? Thanks!
It would be possible to do without traveling with anyone, but it would be easiest if you could get someone to accompany you. The most critical time would be right after you are discharged from the hospital and to help see you home. Would you have to fly?
About to have a septal myectomy with valve repair/replacement in December with Dr. Derani. How long did the surgery last and how long did it take for people to recover? How long were you out of work etc…? Thanks so much!
Hi there! I was diagnosed with HCM at age 12, however I am not too sure when my mitral valve leakage was found (it was first mentioned 3 years ago). When I was 12, my cardiologist explained to me that eventually I would need to have a heart transplant or surgery. I have been on beta blockers to monitor my HCM (I am 34 now) until this last year started having issues going into afib. My first afib was in april and my cardiologist wanted to manage with a higher dose of my beta block and added a blood thinner. This helped for a little while until August when I had another afib attack and went to the er and had to be cardioverted. After that, and meeting with my cardiologist he suggested surgical intervention needed to be pursued. My symptoms with the afib in August were much worse than that in April. I was out of breath, felt light headed and faint. When I am not in afib, I deal with shortness of breath, dizziness(not sure if that’s more because of the meds?) palpitations and sometimes chest pain. I am having my initial consult with Mayo Dec. 4th. Surgery is set for the 22nd.
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Yes, @vialox – not sure how far you would be travelling, but you would not be able to drive for a month or so after surgery so you will need someone to help you get from one place to the next. I have heard of some people traveling by themselves to get to Mayo, but it is not easy. I also chose to stay in Rochester for a few days after my surgery and needed my husband to help me get to the hotel after surgery, go to the store for me, and help me through the airport (though I did get a wheelchair from the airline). Once you get home, you would be ok living alone, but would probably need someone to drive to run errands for you – drugstore, grocery, etc. at least until you are less sore. These days they do have Uber and such, which could help drive you places, but you should probably work all that out in advance. Maybe you have a friend who is willing to help just for a day or two. I actually flew to Rochester alone and underwent tests by myself, and my husband came just in time for surgery. You would only really need someone when you were being discharged.
P.S. These resources might help you get more insight about what you are facing.
https://hcmbeat.com/resources/resources-for-patients-about-myectomy
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2 ReactionsI was diagnosed with HCM in “2001”, diagnosed with HOCM in “2010”, diagnosed with HOCM with MVO in “2013”. So my disease progressed and changed over time. One day a couple months back my heart suddenly stopped responding well to medications, and I almost died. I had to spend three days in the hospital. It was on my hospital bed that I made calls and tried to find answers. I had one of the top HCM centers again tell me I need a heart transplant and to start the process. Before that I didn’t notice how bad my disease was except for the arrhythmias or really bad days. On bad days I would have shortness of breath, arrhythmias, vision changes to the point of not being able to see sometimes, kidney pain, headaches that made me sick, swelling off and on in my stomach, severe chest and back pain, loss of blood circulation in parts of my body, lightheadedness, and presyncope. Also I was always cold. Sometimes to a point that made me scared because even a hot bath didn’t help much. I had a heated blanket I used on my bed in June and July if that paints a good picture. Heat blasted in the car on hot days in the middle of summer that would be awful for the rest of the family. Funny because right after surgery all I wanted was ice packs. I am now wearing shorts which used to be unheard of for me. So all these symptoms happened until like I said, I suddenly got really bad about two months ago. Then my blood pressure and heart rate were all over the place in addition to the above symptoms I mentioned. Blood pressure was either really high or dangerously low. Heart rate was out of control. Every day was a bad day. Painful exhaustion was almost an every moment occurrence. I just had such a hard time functioning. I did actually work right up till the day of my heart surgery. I was so stubborn. Every day though, after I was told I would be seen by Mayo and they scheduled my operation, I didn’t think I would live till surgery. It was only two weeks at that point away, and I just felt like death (the only way to describe it) honestly. I prayed everyday, and thanked God every morning I woke up. After my surgery, I started work 3 weeks exactly post op. My husband did have to drive me to work because I couldn’t drive for a whole week after I started back up. I didn’t work my normal schedule of so many hours. I eased my way back into it. Remember, I am not like most though, and really you should follow what your doctor tells you. I will say I have hope for the future and I am very grateful for my surgery. I had to fight to get care, and information. There was no time for a heart transplant so if I had not found a friend out of our country to point me to Mayo, I would be dead today. No doubt about it. As soon as I am a bit better, I will be giving back and helping those like us that need it. I think it is sad I didn’t have the resources to point me to Mayo and the surgeon I had within the whole network of people I knew. I am very educated about this heart condition and a bit of a fighter so I cannot imagine someone that has just given up or doesn’t want to be educated and leaves it all up to their doctors. I also am very blessed to have two doctors here that respect and care so much about me. Even they didn’t know such an operation was possible so they left my care up to higher volume centers of excellence and their recommendations. Because of everything, I have had several that have approached me about doing a story about what I went through, and the recovery after such a serious and unique operation. I think you are asking all the right questions, and you will be in good care at Mayo. I hope you keep me updated on your recovery.
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1 Reaction@cynaburst, @wintergirl8,
thank you for your stories, – really really appreciate it. I haven’t had such long experience with symptoms. HOCM turned on suddenly last year, and forced making life adjustment. Without the boards like that I would just thinking that it was aging… It’s good to know that there is chance to “extend lease” for a while.
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1 ReactionFinally I myself 2 weeks after extended septal myectomy performed by Dr. Schaff. If interested please read for details at Lisa Salberg’s forum:
https://messageboard.4hcm.org/forum/hcm-support-forums/septal-reduction-myectomy-alcohol-septal-ablation-other/224950-extended-septal-myectomy-at-mayo
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1 ReactionIt would be possible to do without traveling with anyone, but it would be easiest if you could get someone to accompany you. The most critical time would be right after you are discharged from the hospital and to help see you home. Would you have to fly?
About to have a septal myectomy with valve repair/replacement in December with Dr. Derani. How long did the surgery last and how long did it take for people to recover? How long were you out of work etc…? Thanks so much!
Hello @lottyfeeble21,
Welcome to Connect, and thank you for sharing; we’re so glad you’ve joined this group. I’m certain @ronaldpetrovich @ninimurphy @wintergirl8 @seidel9432 @janicepike @lynnkay1956 @PatMattos @mbcube @lisa7 @vivian88 @daisygirl @FrancineFafard @cynaburst @margie11 @vialox , and many others will return to help answer your questions.
In the meantime, I encourage you to view this video, and these discussions on Connect:
– Video Q&A about Hypertrophic Cardiomyopathy & Surgical Treatment Apical Myectomy https://connect.mayoclinic.org/webinar/hypertrophic-cardiomyopathy-and-the-surgical-treatment-apical-myectomy/
– septal myectomy and mitral valve repair https://connect.mayoclinic.org/discussion/septal-myectomy-and-mitral-valve-repair/
– Diagnosed with HOCM last year. May be time for surgery https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
@cynaburst has also provided a great resource that might interest you:
https://hcmbeat.com/resources/resources-for-patients-about-myectomy
@lottyfeeble21, we look forward to getting to know you; while we wait for fellow Connect members to reply, would you share a few more details? When were you diagnosed? Did you have significant symptoms to consider surgery?
Hi there! I was diagnosed with HCM at age 12, however I am not too sure when my mitral valve leakage was found (it was first mentioned 3 years ago). When I was 12, my cardiologist explained to me that eventually I would need to have a heart transplant or surgery. I have been on beta blockers to monitor my HCM (I am 34 now) until this last year started having issues going into afib. My first afib was in april and my cardiologist wanted to manage with a higher dose of my beta block and added a blood thinner. This helped for a little while until August when I had another afib attack and went to the er and had to be cardioverted. After that, and meeting with my cardiologist he suggested surgical intervention needed to be pursued. My symptoms with the afib in August were much worse than that in April. I was out of breath, felt light headed and faint. When I am not in afib, I deal with shortness of breath, dizziness(not sure if that’s more because of the meds?) palpitations and sometimes chest pain. I am having my initial consult with Mayo Dec. 4th. Surgery is set for the 22nd.
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1 ReactionWe wish you all success, @lottyfeeble21. If you are able to, do let us know how next week’s appointment goes, and if you have any questions.