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Aug 26, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

I am also having trouble.
I am very troubled by what has happened to me. I was HUGE supporter and lately they just don’t care. You would think I would be a person of study given my unique situation. Oh well. I will continue to see my regular cardiologist and do my best to fight every day. Sorry you are experiencing hardship as well. We are patients..not numbers

May 11, 2017 · Norpace` in Hypertrophic Cardiomyopathy (HCM)

I agree with @cynaburst. I would call Mayo in Minnesota and see if one of the cardiac team members can review your records.
The number there is (507) 284-2511. Any of the staff will give you the information where your records can be mailed or faxed for another opinion. I do hope you get answers. Please keep us updated xx

May 1, 2017 · What is the recovery like following septal myectomy? in Hypertrophic Cardiomyopathy (HCM)

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.

May 1, 2017 · What is the recovery like following septal myectomy? in Hypertrophic Cardiomyopathy (HCM)

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.

May 1, 2017 · What is the recovery like following septal myectomy? in Hypertrophic Cardiomyopathy (HCM)

Hi. I am one month and a few days out from having a “unique” myectomy done in Minnesota with Dr. Schaff. Although I do not take the place of your doctors directives ect…I think if you have to do it yourself you can, just make sure to take it easy. Also, I would not drive until you get clearance from your doctor. The reason for this is because you still will have residual anesthesia in your system, possible medications, and a lack of complete mobility to some degree. I hope you find the answers you are seeking. It is not an easy surgery but well worth it.