Hi all,
We got back at just before 1am this morning after leaving CCF about 6:40 last nite. Wasn't a bad trip at all. One gas stop and clear roads. Instead of seeing us between surgeries, Dr. Lytle pushed us back until after his last surgery which I think worked out best because he spent almost an hour talking to mom and me. As we were walking down the hall to his office on J1, I told his assistant I felt like I was going to see the Great Oz! LOL!
Anyway, he's SUPER personable and reminds me of Einstein, Mark Twain and Teddy Roosevelt all wrapped into one.
He asked me mom a bunch of questions and had reviewed all her test results and was more focused on the questions of how she felt now vs when she was out there 10 years ago. She told everyone all week she really doesn't feel different. Her life isn't at all limited, she still works as a realtor, she travels, she volunteers, she goes out with friends and she has never thought "oh I need to stay home and rest because I feel tired". He legs don't swell, she doesn't take lasix unless say for a flight or something.
He said he looked at all the test results and was ready to throw a party that their echo and cath had the PAP within 3mmHg of each other. Explained how her doctor at home was right to be concerned but that they just don't get readings as high on for the PAP as they did at home. He said the stenosis is basically the same as it was 10 years ago (2+ - 3+) and the peak and mean pressure in the MV was 13/4 and is now 12/4 so little change there. His thought was that really, in 10 years, not a whole lot has changed (mentioned leaking on the tricuspid but he said it could be inherent to her and can be watched because it's also possibly a result of the elevated PAP) and her life isn't being affected so at this time, he wasn't twisting her arm to have surgery. He's a super guy to talk to though. Took the time to answer my questions about signs of CHF and said he's really not seeing any. He said he would like to have her not wait 10 years but said "let's have you come back in 6 months, we'll do an echo then and see what's what". But basically, he wasn't into surgery for the sake of surgery and said with the size of her atria, the risk of clot was higher than a catastrophic issue from the valve itself and since she's done well on coumadin for almost 30 years, the risk isn't really any higher now vs what it'll be 6 months from now. He said that if she feels symptomatic before 6 months from now, absolutely come back and see him ("if he's still upright") before then. I also asked his assistant as we were leaving what happens if something major happens and we wind up in the ER at home and want to come out here for treatment. She said you have them call us and we send a helicopter or plane. We do it all the time. So that was a relief in that we know that just because it's a 6 - 7 hour trip by car, it doesn't mean we're "stuck" if something happens here.
He basically said, look, it's my responsibility to tell you you need surgery NOW if I think you need it now, but I'm not going to tell you that because I don't think waiting 6 months will change a thing but it'll give us better progress tracking vs a 10 year gap in visits and even though they have records from home, they do their own testing.
It really was a wonderful conversation and not just because he was saying we didn't have to go back in January but because he took the time to talk and explain things, was super personable and you really just felt like he had the patient's best interests in mind.
So that's the news here. Almost all the way home we talked about how wonderful the Clinic is and we think it's gotten better in the 10 years since we've been there. From how helpful and friendly people are to how they do things as far as scheduling and such (in the pre surgery meeting we had - which didn't have to happen as it turns out but we didn't know it at the time - the clinician said that since they wanted us there at 5:15am on the 3rd, since the shuttles weren't running, they'd have security come and pick us up!) it really is just a wonderful place. Can't say enough about it!
I do plan to still keep up with news on the boards and to check in on folks I've "met" here and while I can't help much with the technical questions if anyone has any questions about CCF and getting around and where things are, please let me know and I'll keep an eye out for those types of questions and jump in where I might be able to help. Everyone here as been so helpful and I know our journey isn't over since there will be checkups and possible surgery in the future so it's important for me to stay connected.
We got back at just before 1am this morning after leaving CCF about 6:40 last nite. Wasn't a bad trip at all. One gas stop and clear roads. Instead of seeing us between surgeries, Dr. Lytle pushed us back until after his last surgery which I think worked out best because he spent almost an hour talking to mom and me. As we were walking down the hall to his office on J1, I told his assistant I felt like I was going to see the Great Oz! LOL!
Anyway, he's SUPER personable and reminds me of Einstein, Mark Twain and Teddy Roosevelt all wrapped into one.
He asked me mom a bunch of questions and had reviewed all her test results and was more focused on the questions of how she felt now vs when she was out there 10 years ago. She told everyone all week she really doesn't feel different. Her life isn't at all limited, she still works as a realtor, she travels, she volunteers, she goes out with friends and she has never thought "oh I need to stay home and rest because I feel tired". He legs don't swell, she doesn't take lasix unless say for a flight or something.
He said he looked at all the test results and was ready to throw a party that their echo and cath had the PAP within 3mmHg of each other. Explained how her doctor at home was right to be concerned but that they just don't get readings as high on for the PAP as they did at home. He said the stenosis is basically the same as it was 10 years ago (2+ - 3+) and the peak and mean pressure in the MV was 13/4 and is now 12/4 so little change there. His thought was that really, in 10 years, not a whole lot has changed (mentioned leaking on the tricuspid but he said it could be inherent to her and can be watched because it's also possibly a result of the elevated PAP) and her life isn't being affected so at this time, he wasn't twisting her arm to have surgery. He's a super guy to talk to though. Took the time to answer my questions about signs of CHF and said he's really not seeing any. He said he would like to have her not wait 10 years but said "let's have you come back in 6 months, we'll do an echo then and see what's what". But basically, he wasn't into surgery for the sake of surgery and said with the size of her atria, the risk of clot was higher than a catastrophic issue from the valve itself and since she's done well on coumadin for almost 30 years, the risk isn't really any higher now vs what it'll be 6 months from now. He said that if she feels symptomatic before 6 months from now, absolutely come back and see him ("if he's still upright") before then. I also asked his assistant as we were leaving what happens if something major happens and we wind up in the ER at home and want to come out here for treatment. She said you have them call us and we send a helicopter or plane. We do it all the time. So that was a relief in that we know that just because it's a 6 - 7 hour trip by car, it doesn't mean we're "stuck" if something happens here.
He basically said, look, it's my responsibility to tell you you need surgery NOW if I think you need it now, but I'm not going to tell you that because I don't think waiting 6 months will change a thing but it'll give us better progress tracking vs a 10 year gap in visits and even though they have records from home, they do their own testing.
It really was a wonderful conversation and not just because he was saying we didn't have to go back in January but because he took the time to talk and explain things, was super personable and you really just felt like he had the patient's best interests in mind.
So that's the news here. Almost all the way home we talked about how wonderful the Clinic is and we think it's gotten better in the 10 years since we've been there. From how helpful and friendly people are to how they do things as far as scheduling and such (in the pre surgery meeting we had - which didn't have to happen as it turns out but we didn't know it at the time - the clinician said that since they wanted us there at 5:15am on the 3rd, since the shuttles weren't running, they'd have security come and pick us up!) it really is just a wonderful place. Can't say enough about it!
I do plan to still keep up with news on the boards and to check in on folks I've "met" here and while I can't help much with the technical questions if anyone has any questions about CCF and getting around and where things are, please let me know and I'll keep an eye out for those types of questions and jump in where I might be able to help. Everyone here as been so helpful and I know our journey isn't over since there will be checkups and possible surgery in the future so it's important for me to stay connected.
