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.