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I'm a regular reader and a very occasional poster here, but have been involved with the HCMA since our daughter Caitlyn (now 14) was diagnosed 2 and 1/2 years ago. I guess it's time for an update.
Over New Year's we were in Boston at Tuft's HCM clinic for the first time and it was an amazing place. EVERYONE we met there was great, from Celeste in the front office to the tech, Jessica, to the doctors, Marty Maron and Jim Udelson (we didn't meet Dr. Link). The time they spent with us and the concern shown was beyond what we might have ever expected.
Although Caitlyn’s HCM is obstructed and she has displayed pretty high gradient levels in the past, we thought that it was being controlled effectively by her meds (300 mg. of Veralan); and it was...until this Fall when the numbers jumped significantly from resting levels of 20s and 30s to just over 100. When her local cardiologist (who we truly like and respect, but has not seen many HOCM cases) suggested we investigate alcohol ablation we decided it was definitely time to seek out an evaluation by an HCM specialist. We’d met ‘the young Dr. Maron” (I bet he’d hate me calling him that!) as well as his father at HCMA meetings and the big HCM medical conference in Minneapolis last year so we felt very comfortable going to Boston to see Martin Maron. Caitlyn’s gradient in Boston registered at 130-140, with peaks in the 170-180 range and although she is only very mildly symptomatic (and she wouldn’t even admit to that) they (Drs. Maron and Udelson) felt like both the long term and short term dangers to her heart with such a high gradient warranted recommending surgery. So she’s now scheduled on Feb. 24 for a myectomy in Boston.
We have educated ourselves pretty much about HCM since Caitlyn’s diagnosis but this has still come like a cold bucket of Gatorade on our heads. I think we accept it now as the best and surest way to ensure Caitlyn’s immediate and long term health but it has been difficult, especially I think since she’s not experiencing severe symptoms at present. Caitlyn is very sensitive about it all and has never actually told any of her friends about her HCM up to now, as she really didn’t have to. As you would expect from any 14 year old girl, she just wants to be like everybody else.
We are of course concerned for her about scarring and if anyone has any experience with myectomy recovery time and scarring in a teenager we would love to hear from you. Although Tufts is fairly new to the myectomy business, I have heard and experienced only great things there and have great confidence in them. That said, it’s still damn scary!
While we were in Boston we spent a lot of time with Lisa and her family and had the BEST time imaginable! There was good food and New Year’s fun in abundance! She is a remarkable individual and we had a really great time there as well with Adam, Becca, and Stacey.
Paul and Elizabeth
Decatur, GA
Over New Year's we were in Boston at Tuft's HCM clinic for the first time and it was an amazing place. EVERYONE we met there was great, from Celeste in the front office to the tech, Jessica, to the doctors, Marty Maron and Jim Udelson (we didn't meet Dr. Link). The time they spent with us and the concern shown was beyond what we might have ever expected.
Although Caitlyn’s HCM is obstructed and she has displayed pretty high gradient levels in the past, we thought that it was being controlled effectively by her meds (300 mg. of Veralan); and it was...until this Fall when the numbers jumped significantly from resting levels of 20s and 30s to just over 100. When her local cardiologist (who we truly like and respect, but has not seen many HOCM cases) suggested we investigate alcohol ablation we decided it was definitely time to seek out an evaluation by an HCM specialist. We’d met ‘the young Dr. Maron” (I bet he’d hate me calling him that!) as well as his father at HCMA meetings and the big HCM medical conference in Minneapolis last year so we felt very comfortable going to Boston to see Martin Maron. Caitlyn’s gradient in Boston registered at 130-140, with peaks in the 170-180 range and although she is only very mildly symptomatic (and she wouldn’t even admit to that) they (Drs. Maron and Udelson) felt like both the long term and short term dangers to her heart with such a high gradient warranted recommending surgery. So she’s now scheduled on Feb. 24 for a myectomy in Boston.
We have educated ourselves pretty much about HCM since Caitlyn’s diagnosis but this has still come like a cold bucket of Gatorade on our heads. I think we accept it now as the best and surest way to ensure Caitlyn’s immediate and long term health but it has been difficult, especially I think since she’s not experiencing severe symptoms at present. Caitlyn is very sensitive about it all and has never actually told any of her friends about her HCM up to now, as she really didn’t have to. As you would expect from any 14 year old girl, she just wants to be like everybody else.
We are of course concerned for her about scarring and if anyone has any experience with myectomy recovery time and scarring in a teenager we would love to hear from you. Although Tufts is fairly new to the myectomy business, I have heard and experienced only great things there and have great confidence in them. That said, it’s still damn scary!
While we were in Boston we spent a lot of time with Lisa and her family and had the BEST time imaginable! There was good food and New Year’s fun in abundance! She is a remarkable individual and we had a really great time there as well with Adam, Becca, and Stacey.
Paul and Elizabeth
Decatur, GA
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