Lindsay's Guestbook

Lindsay Beth  Adam, I am going through all the material here and it's so helpful. I was wondering if you know where I might find more resources on PVR (survival/ outcomes/ what to expect/ or even people who I might be able to connect with). I wonder if the women you interviewed about survival might be able to speak to pvr (they addressed the other valves but this one seems to be more of mystery). Either way, thank you so much for all of this info.

Adam Pick  Hey Lindsay! Unfortunately, good coverage of pulmonary valve disease is limited given its prevalence. I wish I had a sure-fire resource I could refer you to. Unfortunately, I do not. If you have questions, I would really encourage you to get very comfortable with your medical team and ask them as many questions as you need answered. If you are not getting good answers, please let me know and I will do my best to connect you with a specialist. Sound good?

Lindsay Beth  HI Adam, Thanks! I have reached out to my team with some questions I cannot seem to nail down. I will let you know what they say. I am also flying to Cleveland for a second opinion and will ask questions then. I really appreciate your helping me find a specialist for answers if I cannot find them myself (which would probably indicate that I need a better team anyway). One big question I have that is more general in terms of valve surgery for any valve (I think) is about trans-cath procedures. I was told after an initial surgery I would never need another surgical procedure and that all subsequent procedures could be done via catheter. I know everyone's situation is different and I have asked for clarification, but I cannot find ANY data that suggests that valve-in-valve procedures can be done more than once (or maybe twice). Give that I am only 35 and PVR (especially when you are like me and want to have children) is generally done with a bioprosthetic valve, I could be facing several repeat PVRs in my life. Do you have any information or data that suggests that trans-catheter valve-in-valve replacements can be done multiple times? Totally fine if not - actually just emailed 2 doctors on my team about this, so I will report back if you don't have any additional info.

Lindsay Beth  HI Adam, Thanks! I have reached out to my team with some questions I cannot seem to nail down. I will let you know what they say. I am also flying to Cleveland for a second opinion and will ask questions then. I really appreciate your helping me find a specialist for answers if I cannot find them myself (which would probably indicate that I need a better team anyway). One big question I have that is more general in terms of valve surgery for any valve (I think) is about trans-cath procedures. I was told after an initial surgery I would never need another surgical procedure and that all subsequent procedures could be done via catheter. I know everyone's situation is different and I have asked for clarification, but I cannot find ANY data that suggests that valve-in-valve procedures can be done more than once (or maybe twice). Give that I am only 35 and PVR (especially when you are like me and want to have children) is generally done with a bioprosthetic valve, I could be facing several repeat PVRs in my life. Do you have any information or data that suggests that trans-catheter valve-in-valve replacements can be done multiple times? Totally fine if not - actually just emailed 2 doctors on my team about this, so I will report back if you don't have any additional info.

Lindsay Beth  HI Adam, Thanks! I have reached out to my team with some questions I cannot seem to nail down. I will let you know what they say. I am also flying to Cleveland for a second opinion and will ask questions then. I really appreciate your helping me find a specialist for answers if I cannot find them myself (which would probably indicate that I need a better team anyway). One big question I have that is more general in terms of valve surgery for any valve (I think) is about trans-cath procedures. I was told after an initial surgery I would never need another surgical procedure and that all subsequent procedures could be done via catheter. I know everyone's situation is different and I have asked for clarification, but I cannot find ANY data that suggests that valve-in-valve procedures can be done more than once (or maybe twice). Give that I am only 35 and PVR (especially when you are like me and want to have children) is generally done with a bioprosthetic valve, I could be facing several repeat PVRs in my life. Do you have any information or data that suggests that trans-catheter valve-in-valve replacements can be done multiple times? Totally fine if not - actually just emailed 2 doctors on my team about this, so I will report back if you don't have any additional info.