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bobbie416
I don't know if you all remember me. I came to this forum in January after my 33 yr. old daughter was told she'd probably need a valve replacement in 20 years. If you rremember my name is bobbie and I was in a panic.
I'd love to share these last months with you. I spent about 2 weeks glued to the computer- and got a wealth a information from you all. Then I went to work, as any good obsessed, worried mom does, and starterd investigating everything I could.
In the meantime daughter decides to get another cardio's opinion and an echo. Now we have progressed in a year from Moderate regurgitation to Mod-severe. But this Dr. too just seemed to blow her off- saying she was young yet and could wait.
I had been collecting a folder for her- and gave it to her to look at. All the young people from here who had repairs etc. done when they were healthy- all the data I had researched seemd to indicate doing this early while the heart was healthy. She was terrified but decided to take control of her health and went to a major surgeon for an opinion. Had her first TEE done. It showed her heart was enlarging ( something I read here told me that was a sign to do something) and she was very symptomatic- had been for so many years- but taking meds for anxiety.Hard breathing laying in bed- tired-out of breath- heart pounding etc. just feeling lousy for so long.
This Dr. said the problem was the anteriel leaflet(sp.?) and would be difficult to repair. He gave her 80-20 odds he could repair it. Next visit- he says now - why don't we just monitor it every 3 months etc. We were so confused. I felt he probably felt he couldn't do the repair and would rather see her wait for a few years-then he would replace it. This did not sit well with us. I suggested she might well get another opinion or as many as she could. There must be someone out there who could do this repair.
Well she started doing her homework and called me a few hours later. Seems she'd reached a top surgeon at NYU. Happens he was in the office and got on the phone. She was thrilled. He spoke to her for about a half hour- going over whatever info she had on hand. She loved his manner- his caring- it just felt right. From what she told him on the phone he said "Anterier leaflet problem? We do that all the time. About 2000 MV surgeries yearly and he had done this one many times with success. . He gave her 98% odds he could repair it.
He got her to see him within a few days and within a week after meeting her- she was in surgery! I have been worried for 6 months and now it was here. I knew how much she wanted this repair not a replacement at her age. I was on my knees in prayer- for her safety and for God to grant her this.
Well- she has had her surgery- June 7th and had her REPAIR!! She is recovering so fast we can't believe it. A few days after, she was out at the mall and visiting her sisters.
My heart is overflowing with gratitude to my God- and to the hands he guided to do this for her. She now has so much to look forward to with her 3 and 2 year old children~a healthy mom.
Just wanted to share my happiness with you all. She probably will be writing here too..
God bless you all. I still can't believe it's over. Dr. said our instincts were right.She was symptomatic, had heart enlargement etc. and that's when he believed you do this- when you are young and strong and don't have bad heart damage.He said she could have chosen to wait- but would have had the heart of an 80 year old woman.
We're off to see him Tues. for her post op visit ~I can't wait to give him another big hug.
blessings,
bobbie
I'd love to share these last months with you. I spent about 2 weeks glued to the computer- and got a wealth a information from you all. Then I went to work, as any good obsessed, worried mom does, and starterd investigating everything I could.
In the meantime daughter decides to get another cardio's opinion and an echo. Now we have progressed in a year from Moderate regurgitation to Mod-severe. But this Dr. too just seemed to blow her off- saying she was young yet and could wait.
I had been collecting a folder for her- and gave it to her to look at. All the young people from here who had repairs etc. done when they were healthy- all the data I had researched seemd to indicate doing this early while the heart was healthy. She was terrified but decided to take control of her health and went to a major surgeon for an opinion. Had her first TEE done. It showed her heart was enlarging ( something I read here told me that was a sign to do something) and she was very symptomatic- had been for so many years- but taking meds for anxiety.Hard breathing laying in bed- tired-out of breath- heart pounding etc. just feeling lousy for so long.
This Dr. said the problem was the anteriel leaflet(sp.?) and would be difficult to repair. He gave her 80-20 odds he could repair it. Next visit- he says now - why don't we just monitor it every 3 months etc. We were so confused. I felt he probably felt he couldn't do the repair and would rather see her wait for a few years-then he would replace it. This did not sit well with us. I suggested she might well get another opinion or as many as she could. There must be someone out there who could do this repair.
Well she started doing her homework and called me a few hours later. Seems she'd reached a top surgeon at NYU. Happens he was in the office and got on the phone. She was thrilled. He spoke to her for about a half hour- going over whatever info she had on hand. She loved his manner- his caring- it just felt right. From what she told him on the phone he said "Anterier leaflet problem? We do that all the time. About 2000 MV surgeries yearly and he had done this one many times with success. . He gave her 98% odds he could repair it.
He got her to see him within a few days and within a week after meeting her- she was in surgery! I have been worried for 6 months and now it was here. I knew how much she wanted this repair not a replacement at her age. I was on my knees in prayer- for her safety and for God to grant her this.
Well- she has had her surgery- June 7th and had her REPAIR!! She is recovering so fast we can't believe it. A few days after, she was out at the mall and visiting her sisters.
My heart is overflowing with gratitude to my God- and to the hands he guided to do this for her. She now has so much to look forward to with her 3 and 2 year old children~a healthy mom.
Just wanted to share my happiness with you all. She probably will be writing here too..
God bless you all. I still can't believe it's over. Dr. said our instincts were right.She was symptomatic, had heart enlargement etc. and that's when he believed you do this- when you are young and strong and don't have bad heart damage.He said she could have chosen to wait- but would have had the heart of an 80 year old woman.
We're off to see him Tues. for her post op visit ~I can't wait to give him another big hug.
blessings,
bobbie
