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Hi, and thank you for being such a great organization.
My wife Beverly was first diagnosed with HCM at age 14. She's told me stories that as a very young girl she would sometimes get so out of breath after taking a basket of laundry up the stairs that she needed a nap afterwards. In her early youth she was a star athlete in the local and regional communities, and thought that everyone's heart felt like it was going to beat out of their chest when they ran around the bases on the softball field. At 14 they found the disease completely by accident while she was being treated for pneumonia.
She spent several years being treated by a local cardiologist and also participating in the HCM research studies at NIH. I guess it's no secret around here what has happened to their program. A few months ago my wife stumbled across this website while researching HCM and pregnancy and has since had several email and phone conversations with Lisa, who gave Bev a great deal of information, especially about HCM specialists she could see to get a more thorough diagnosis.
We live in Virginia, but my family lives up on the Minnesota and Wisconsin border in the US, and we had a family vacation already booked for June, so when Dr. Barry Maron's name came up the choice was made. All I have to say is, I've never been as impressed with a medical staff as I have been with the folks at MHI. At one point or another every member of Dr Maron's research staff came in to attend the testing, and Dr Maron himself even came in during the ECHO to see real time pictures.
When the testing was over and all the questions were answered Dr Maron gave us the news. Needless to say its not an easy thing to listen to someone tell your 27 year old wife that she has end-stage HCM, is well into CHF, and needs to get on a heart transplant list. This all happened on June 22nd, or a week and a half ago.
Bev's health has deteriorated quite a bit in the last year. She's retaining quite a bit of fluid (Mr Zenovich estimated 35 lbs or more) to the point where 2 months ago a simple chest cold turned into full blown pneumonia in a couple of days. She gets winded very easily, and she gets "jello legs" at least a couple times a day.
All that said we're a very fortunate family. We were so impressed with the staff at MHI we've decided to move to Minnesota to have her disease managed by Dr Maron and the HCMC staff. My company has agreed to transfer me to its Minnesota offices and allowed me to work 80% from home. And after several days of discussions with my insurance company, they've agreed to the transplant surgery. Believe me, as bad as the news has been I know how blessed we are to be in the position we're in right now.
Finally, I want to thank you for this organization. Had it not been for your presence and this website we may not have found Dr Maron, and may never have known how serious things were. Your mission to educate, as well as advocate is indeed a worthy one. Thank you all.
Steve Tye
My wife Beverly was first diagnosed with HCM at age 14. She's told me stories that as a very young girl she would sometimes get so out of breath after taking a basket of laundry up the stairs that she needed a nap afterwards. In her early youth she was a star athlete in the local and regional communities, and thought that everyone's heart felt like it was going to beat out of their chest when they ran around the bases on the softball field. At 14 they found the disease completely by accident while she was being treated for pneumonia.
She spent several years being treated by a local cardiologist and also participating in the HCM research studies at NIH. I guess it's no secret around here what has happened to their program. A few months ago my wife stumbled across this website while researching HCM and pregnancy and has since had several email and phone conversations with Lisa, who gave Bev a great deal of information, especially about HCM specialists she could see to get a more thorough diagnosis.
We live in Virginia, but my family lives up on the Minnesota and Wisconsin border in the US, and we had a family vacation already booked for June, so when Dr. Barry Maron's name came up the choice was made. All I have to say is, I've never been as impressed with a medical staff as I have been with the folks at MHI. At one point or another every member of Dr Maron's research staff came in to attend the testing, and Dr Maron himself even came in during the ECHO to see real time pictures.
When the testing was over and all the questions were answered Dr Maron gave us the news. Needless to say its not an easy thing to listen to someone tell your 27 year old wife that she has end-stage HCM, is well into CHF, and needs to get on a heart transplant list. This all happened on June 22nd, or a week and a half ago.
Bev's health has deteriorated quite a bit in the last year. She's retaining quite a bit of fluid (Mr Zenovich estimated 35 lbs or more) to the point where 2 months ago a simple chest cold turned into full blown pneumonia in a couple of days. She gets winded very easily, and she gets "jello legs" at least a couple times a day.
All that said we're a very fortunate family. We were so impressed with the staff at MHI we've decided to move to Minnesota to have her disease managed by Dr Maron and the HCMC staff. My company has agreed to transfer me to its Minnesota offices and allowed me to work 80% from home. And after several days of discussions with my insurance company, they've agreed to the transplant surgery. Believe me, as bad as the news has been I know how blessed we are to be in the position we're in right now.
Finally, I want to thank you for this organization. Had it not been for your presence and this website we may not have found Dr Maron, and may never have known how serious things were. Your mission to educate, as well as advocate is indeed a worthy one. Thank you all.
Steve Tye
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