O
oscarsonthepond
The short version:
My wife needs PVR
, what do we do?
The long version:
1983:
My wife is now 23 years old w/ a 14 month old daughter (c-section). She was born with pulmonary stenosis (as far as we know she only had PS and not tetralogy of fallot, but we're still waiting on the records), which was repaired when she was 8 months old (22 yrs ago) through OHS. Doctors have always said that her heart sounds funny, but until recently she was never told that she needed to see a cardiologist regularly or anything like that.
2001:
About five years ago she was having some kind of abdominal discomfort for about 3 weeks that got so bad that she pretty much just stayed in bed all day....not sure if that was related to her heart or not (never fully diagnosed)
2005:
When she got pregnant we went to the cardiologist a couple of times (a resident at UCLA). She got an echo and was given the go-ahead to have a natural labor & delivery (she ended up being in labor for 20 hours before having a c-section because of failure to progress). The cardiologist told her that she did have pulmonary regurgitation, that at the time it was more of a "splash" than a "gush", and that at some point in life she would probably need her valve replaced - could be 5 years, could be 50, could possibly be never - and that she should exercise daily so that she would be abe to tell (by being abnormally out of breath) when she needs surgery. Also, my wife begain gaining weight probably around 4 years ago...at her highest she was about 90 lbs (~2004) overweight and is currently about 65 lbs over (and dropping daily).
2006 (early):
Not sure if this stuff is related at all.....At the start of the year she began experiencing chest pain, which she describes as a constant heavy pressure which flares up and gets worse at times (usually at night and in the car). It was always on the left side, and she would also experience back pain at exactly the same point on her back - often the back pain was/is just as bad or worse than the chest pain. Sometimes she would say her left arm tingled and her throat felt like it was closing up, but we both now think those were panic attacks due to her anxiety over the situation. After many ER visits and all sorts of doctors, the cardiologist said that everything was still fine (although she had PR) and she was ultimately diagnosed via endoscopy (4 months later - this past April) with all sorts of gastrointestinal problems (esophagitis, gastritis, duodenal ulcers). She had been on GI drugs (protein pump inhibitors) for a month or more with no relief, but it seemed like after the diagnosis and taking the drugs longer her pain dwindled and she felt better for much of the summer (although I don't know that it ever entirely went away).
2006 (recently):
At the beginning of October she got this horrible migraine/neck pain that lasted 2 weeks straight and got worse and worse every day. Her mom suffers from severe migraines, and she does too, but usually they last no more than a day (two at the most). The migraine, much like her chest pain, was completely debilitating, made it so she frequently got no sleep at all, and obviously made it very difficult to take care of an active toddler. Anyways...we tried every med out there and it finally went away on its own. Shortly thereafter her chest pain began to get a lot worse again, and now her chest/back pain is as bad as it's ever been. We went to the gastroenterologist and he said he didn't think that was her problem anymore....he gave her steroids for chest wall pain and those didn't do anything....also she's had lots of chest x-rays, ct scans, etc...and they always come back fine. The only thing anybody can find wrong is her heart, but everybody says that doesn't seem like the cause of her pain. If we pushed for it we could probably get another endoscopy in a couple weeks, but GI seems less and less likely all the time as she's been on Protonix for 7 months and has been taking a double dose for awhile.
Latest cardiologist visit:
So a couple weeks ago after her chest was really hurting (and got particularly bad after exercise) we saw a cardiologist (we just moved to Utah so it's a new one), whom we really really like (he takes lots of time to explain everything, answer questions, etc.....also, he did his residency at Washington U in St. Louis and seems like he knows his stuff). When he listened to her heart he said "interesting..." and set up a stress echo, which we just did the other day. He was there for the test and told us that her backflow is moderate-to-severe I think (he said it was a 3 where 0 = no backflow and 4 = severe backflow). He did say, however, that it seemed to be working well (not sure what that means if there's a lot of backflow still). Also as a result her heart is enlarged. He told us that it's sort of debatable at what point exactly to have surgery, but that most think that the better indicator is how well the valve is functioning (which hers is doing well) as opposed to how much backflow there is (which she has a lot). Anyways....bottom line is he told us that she's probably gonna need it sooner rather than later and that it's not to the point now that she's gonna have permanent symptoms if she gets it fixed or anything like that but that if we wait too long it could get there.
He hasn't had a chance to see any of her old echos yet so we're working on getting the records sent and we'll go in on Dec 1st so he can see how much it's progressing, etc. and then we'll make some decisions thereafter. Right now we are leaning towards sooner rather than later (we're thinking maybe Fe
bruary)...our thoughts are 1) nobody seemed concerned about it before - they said it was just a "splash" and now it seems like it's gotten a lot worse and 2) we'd rather just get it over with now if she needs it soon anyways so it's not hanging over our heads. Of course our thoughts could totally change depending on what we hear Dec. 1st.
We are definitely leaning toward a tissue valve at this point. Although my wife is only 23, having more kids is very important to us and being on blood thinners for the rest of her life doesn't sound like great fun (although we realize it's certainly not the end of the world). The plan would probably be get a tissue valve now....keep it for the 10 years or however long it'll last us and pop out a few more kids...then hopefully get it replaced with a more technologically advanced valve later on (perhaps a tissue that would last a lot longer or somethin along those lines)
Sorry for the lengthy post...that was probably way too much information. We of course have lots of questions...any answers would be greatly appreciated! Thanks so much in advance for any responses (and for all the info I've already gotten from reading these forums. Our questions are:
1) Anybody have any info on when a good time for replacement is? Has anybody heard about the amount of backflow not necessarily being a good factor to base the timing off of? Any info or articles on the decision of at what point in time to get PVR would be great!
2) Any tips on picking between tissue valves? Everywhere we look they only talk about Mitral/Aortic....what are the porcine or bovine options for pulmonary? Our doctor only mentioned xenografts and mechanical....is a homograft an option? How does that work - would there be a waiting list or something? Is her condition not severe enough to get us a human valve?
3) In looking at studies on-line it seems like I saw some places where 95% of PVR patients were still alive 10 years out and I thought I saw another one where only 75% were still alive 10 years out. Are most of the deaths in people who are elderly or have lots of heart problems? Is my wife at much of a risk for death or serious complications if PR is her only big health problem? I tried doing the risk calculator, but despite entering all the necessary info, I never got it to spit out an answer.
4) Assuming everything goes fine in the short term....like say the surgery goes great and she gets a mechanical valve in ten years and that goes well also....are there any longterm risks that we need to know about? I guess what I'm asking is...do people with PVR tend to live shorter lives? Or as long as we keep track of her valve and take care of any problems that might arise from it will she be able to live a totally normal, full-length life?
5) Has anybody ever heard of chest/back pain from PR? We go back and forth between thinking it's her heart or her stomach or anxiety or some other cause. The pain is extremely debilitating, though, and consumes many aspects of our lives so any suggestion as to what may be causing it (heart-related or not) would be GREATLY appreciated!
6) What questions should we ask her cardiologist when we go back?
7) Any suggestions on surgeons or how to find a surgeon? Just in looking online I found John Doty, who looks like he really knows his stuff (was cheif resident at Johns Hopkins and now teaches lots of classes on the subject) and seems really into the valve thing (the first thing he lists under interests is "Homograft and xenograft valve replacement"). His dad (Donald Doty) seems like he was/is a real expert in the field (~150 studies published mostly all on valves), but I think he's retired now. John Doty published lots of studies with his dad though and it seems like he's following in his footsteps. The only thing is he finished his last fellowship/residency in 2003....is that too recent? My thoughts are 1) he will be up to date on the latest information, 2) PVR is I think the least complex valve surgery so the learning curve shouldn't be too bad, 3) He finished med school in 94 and began doing heart surgery stuff in 96...that seems like awhile to me. Any suggestions would be great...for insurance we need to stay in Utah, but it seems like most heart surgeons here take our insurance.
8) Anything else we should know about?
Thank you so much in advance for any response!
My wife needs PVR
, what do we do?The long version:
1983:
My wife is now 23 years old w/ a 14 month old daughter (c-section). She was born with pulmonary stenosis (as far as we know she only had PS and not tetralogy of fallot, but we're still waiting on the records), which was repaired when she was 8 months old (22 yrs ago) through OHS. Doctors have always said that her heart sounds funny, but until recently she was never told that she needed to see a cardiologist regularly or anything like that.
2001:
About five years ago she was having some kind of abdominal discomfort for about 3 weeks that got so bad that she pretty much just stayed in bed all day....not sure if that was related to her heart or not (never fully diagnosed)
2005:
When she got pregnant we went to the cardiologist a couple of times (a resident at UCLA). She got an echo and was given the go-ahead to have a natural labor & delivery (she ended up being in labor for 20 hours before having a c-section because of failure to progress). The cardiologist told her that she did have pulmonary regurgitation, that at the time it was more of a "splash" than a "gush", and that at some point in life she would probably need her valve replaced - could be 5 years, could be 50, could possibly be never - and that she should exercise daily so that she would be abe to tell (by being abnormally out of breath) when she needs surgery. Also, my wife begain gaining weight probably around 4 years ago...at her highest she was about 90 lbs (~2004) overweight and is currently about 65 lbs over (and dropping daily).
2006 (early):
Not sure if this stuff is related at all.....At the start of the year she began experiencing chest pain, which she describes as a constant heavy pressure which flares up and gets worse at times (usually at night and in the car). It was always on the left side, and she would also experience back pain at exactly the same point on her back - often the back pain was/is just as bad or worse than the chest pain. Sometimes she would say her left arm tingled and her throat felt like it was closing up, but we both now think those were panic attacks due to her anxiety over the situation. After many ER visits and all sorts of doctors, the cardiologist said that everything was still fine (although she had PR) and she was ultimately diagnosed via endoscopy (4 months later - this past April) with all sorts of gastrointestinal problems (esophagitis, gastritis, duodenal ulcers). She had been on GI drugs (protein pump inhibitors) for a month or more with no relief, but it seemed like after the diagnosis and taking the drugs longer her pain dwindled and she felt better for much of the summer (although I don't know that it ever entirely went away).
2006 (recently):
At the beginning of October she got this horrible migraine/neck pain that lasted 2 weeks straight and got worse and worse every day. Her mom suffers from severe migraines, and she does too, but usually they last no more than a day (two at the most). The migraine, much like her chest pain, was completely debilitating, made it so she frequently got no sleep at all, and obviously made it very difficult to take care of an active toddler. Anyways...we tried every med out there and it finally went away on its own. Shortly thereafter her chest pain began to get a lot worse again, and now her chest/back pain is as bad as it's ever been. We went to the gastroenterologist and he said he didn't think that was her problem anymore....he gave her steroids for chest wall pain and those didn't do anything....also she's had lots of chest x-rays, ct scans, etc...and they always come back fine. The only thing anybody can find wrong is her heart, but everybody says that doesn't seem like the cause of her pain. If we pushed for it we could probably get another endoscopy in a couple weeks, but GI seems less and less likely all the time as she's been on Protonix for 7 months and has been taking a double dose for awhile.
Latest cardiologist visit:
So a couple weeks ago after her chest was really hurting (and got particularly bad after exercise) we saw a cardiologist (we just moved to Utah so it's a new one), whom we really really like (he takes lots of time to explain everything, answer questions, etc.....also, he did his residency at Washington U in St. Louis and seems like he knows his stuff). When he listened to her heart he said "interesting..." and set up a stress echo, which we just did the other day. He was there for the test and told us that her backflow is moderate-to-severe I think (he said it was a 3 where 0 = no backflow and 4 = severe backflow). He did say, however, that it seemed to be working well (not sure what that means if there's a lot of backflow still). Also as a result her heart is enlarged. He told us that it's sort of debatable at what point exactly to have surgery, but that most think that the better indicator is how well the valve is functioning (which hers is doing well) as opposed to how much backflow there is (which she has a lot). Anyways....bottom line is he told us that she's probably gonna need it sooner rather than later and that it's not to the point now that she's gonna have permanent symptoms if she gets it fixed or anything like that but that if we wait too long it could get there.
He hasn't had a chance to see any of her old echos yet so we're working on getting the records sent and we'll go in on Dec 1st so he can see how much it's progressing, etc. and then we'll make some decisions thereafter. Right now we are leaning towards sooner rather than later (we're thinking maybe Fe
bruary)...our thoughts are 1) nobody seemed concerned about it before - they said it was just a "splash" and now it seems like it's gotten a lot worse and 2) we'd rather just get it over with now if she needs it soon anyways so it's not hanging over our heads. Of course our thoughts could totally change depending on what we hear Dec. 1st.
We are definitely leaning toward a tissue valve at this point. Although my wife is only 23, having more kids is very important to us and being on blood thinners for the rest of her life doesn't sound like great fun (although we realize it's certainly not the end of the world). The plan would probably be get a tissue valve now....keep it for the 10 years or however long it'll last us and pop out a few more kids...then hopefully get it replaced with a more technologically advanced valve later on (perhaps a tissue that would last a lot longer or somethin along those lines)
Sorry for the lengthy post...that was probably way too much information. We of course have lots of questions...any answers would be greatly appreciated! Thanks so much in advance for any responses (and for all the info I've already gotten from reading these forums. Our questions are:
1) Anybody have any info on when a good time for replacement is? Has anybody heard about the amount of backflow not necessarily being a good factor to base the timing off of? Any info or articles on the decision of at what point in time to get PVR would be great!
2) Any tips on picking between tissue valves? Everywhere we look they only talk about Mitral/Aortic....what are the porcine or bovine options for pulmonary? Our doctor only mentioned xenografts and mechanical....is a homograft an option? How does that work - would there be a waiting list or something? Is her condition not severe enough to get us a human valve?
3) In looking at studies on-line it seems like I saw some places where 95% of PVR patients were still alive 10 years out and I thought I saw another one where only 75% were still alive 10 years out. Are most of the deaths in people who are elderly or have lots of heart problems? Is my wife at much of a risk for death or serious complications if PR is her only big health problem? I tried doing the risk calculator, but despite entering all the necessary info, I never got it to spit out an answer.
4) Assuming everything goes fine in the short term....like say the surgery goes great and she gets a mechanical valve in ten years and that goes well also....are there any longterm risks that we need to know about? I guess what I'm asking is...do people with PVR tend to live shorter lives? Or as long as we keep track of her valve and take care of any problems that might arise from it will she be able to live a totally normal, full-length life?
5) Has anybody ever heard of chest/back pain from PR? We go back and forth between thinking it's her heart or her stomach or anxiety or some other cause. The pain is extremely debilitating, though, and consumes many aspects of our lives so any suggestion as to what may be causing it (heart-related or not) would be GREATLY appreciated!
6) What questions should we ask her cardiologist when we go back?
7) Any suggestions on surgeons or how to find a surgeon? Just in looking online I found John Doty, who looks like he really knows his stuff (was cheif resident at Johns Hopkins and now teaches lots of classes on the subject) and seems really into the valve thing (the first thing he lists under interests is "Homograft and xenograft valve replacement"). His dad (Donald Doty) seems like he was/is a real expert in the field (~150 studies published mostly all on valves), but I think he's retired now. John Doty published lots of studies with his dad though and it seems like he's following in his footsteps. The only thing is he finished his last fellowship/residency in 2003....is that too recent? My thoughts are 1) he will be up to date on the latest information, 2) PVR is I think the least complex valve surgery so the learning curve shouldn't be too bad, 3) He finished med school in 94 and began doing heart surgery stuff in 96...that seems like awhile to me. Any suggestions would be great...for insurance we need to stay in Utah, but it seems like most heart surgeons here take our insurance.
8) Anything else we should know about?
Thank you so much in advance for any response!
