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@vialox

<p>Considering different scenarios and wondering if somebody did it alone without family members or friends?<br /> What would be the hardest in such situation? Thanks!</p>

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Replies to "Considering different scenarios and wondering if somebody did it alone without family members or friends? What..."

Hello @vialox, you will see that I moved your conversation to the thread "What is the recovery like for septal myectomy". I believe this will be a good place to post your question.

Asking members @cynaburst @lynnkay1956 @ronaldpetrovich @1949 @mbcube @vivian88 @FrancineFafard @woodywood @lepadelford @lisa7 @lucindag to help answer your question.

Hi! I had my myectomy this past December and today is my 4 month anniversary! The recovery isn't as bad as I thought it would be. But, don't get me wrong and think it's easy either. I became anemic from blood loss in surgery so I was probably weaker than most (I was warned that I would). I had pain, but it was well managed by taking Tylenol throughout the day. My biggest problem was not doing anything around the house and resting. My best advice is to be as healthy as you can going into surgery. Best of luck to you.

I think that as long as you had someone to help you travel it is doable by yourself. I didn't require much help after surgery. You can read my experiences and see how it was for me here:

http://Www.Cynthiassummeradventure.blogspot.com

Thank you all. So a bottom line is transportation....

Yes, because they will make sure you can use the bathroom and walk before you leave the hospital. Granted you will walk slowly at first and have to take breaks but it will get better each day.

@wintergirl8, - how sever were your symptoms before SM? How long did it take after Dx to SM? I was diagnosed more than year ago, and felt deterioration of my conditions since then.

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

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.

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?