Ross
Well-known member
Thanks Rob, couldn't have said it any better myself. Andrea check your email too!
One valve for life?
- Thread starter chilihead
- Start date
Help Support Valve Replacement Forums:
K
Karlynn
Andrea,
I was 32 when I had my valve replaced. Now I'm 44. I too was a little in shock when I started reading this thread, because for the last 12 years I was under the assumption that, barring anything unusual, this would be my one and only replacement. After freaking out (sort of) for a few hours, I began to think that IF it needs to be replaced many years down the road, think of the technology by then. It boggles the mind!
Karlynn
I was 32 when I had my valve replaced. Now I'm 44. I too was a little in shock when I started reading this thread, because for the last 12 years I was under the assumption that, barring anything unusual, this would be my one and only replacement. After freaking out (sort of) for a few hours, I began to think that IF it needs to be replaced many years down the road, think of the technology by then. It boggles the mind!
Karlynn
chilihead
Well-known member
I apologize for freaking everyone out about needing another valve job. I was just as shocked when the surgeon in Dallas told me. He did seem to be quite frank about it and it has really had me going on deciding what to do next. I was also under the impression that a mechanical would be a one time deal, even at 39 years old.
I was merely passing on the information and hoping to find out what others had been told. My cardiologist definitely thinks the mechanical is a one time deal. None of us want to go through the ordeal more than necessary!
Thanks for all the inputs.
Jim
I was merely passing on the information and hoping to find out what others had been told. My cardiologist definitely thinks the mechanical is a one time deal. None of us want to go through the ordeal more than necessary!
Thanks for all the inputs.
Jim
My valve
My valve
Better last.
I was age 61 and planning on living to be over age 100. Who wants to die at age 91. That's when life begins in Nursing homes. Chasing all those younger men down the hall on my walker. Bonnie
My valve
Better last.
I was age 61 and planning on living to be over age 100. Who wants to die at age 91. That's when life begins in Nursing homes. Chasing all those younger men down the hall on my walker. Bonnie
K
Karlynn
Jim
Don't apologize. Being forewarned is being fore-armed. I always wondered how they knew it would last a lifetime. Then after your post, I went to the St. Jude website and looked at their stats. They were starting at age 50 and older. Like I mentioned to Andrea, I'm not going to worry, not at the rate technology improves. Now health insurance...that's another story!
Blessings,
Karlynn
Don't apologize. Being forewarned is being fore-armed. I always wondered how they knew it would last a lifetime. Then after your post, I went to the St. Jude website and looked at their stats. They were starting at age 50 and older. Like I mentioned to Andrea, I'm not going to worry, not at the rate technology improves. Now health insurance...that's another story!
Blessings,
Karlynn
Karlynn
Karlynn
After my open-heart surgery at age 61..a month later, my age 85 year old aunt (Daddy's sister) had open-heart too. She is doing great. Attended their age 96 year old sister's funeral last month. I think she did better than me Bonnie
Karlynn
After my open-heart surgery at age 61..a month later, my age 85 year old aunt (Daddy's sister) had open-heart too. She is doing great. Attended their age 96 year old sister's funeral last month.
I think she did better than me Bonnie
Turkey Hunter
Well-known member
My $0.02
My $0.02
Chilihead,
As I read these reply's to your post I would have to agree that this decision is the hardest part of the surgery. Although, the choice is yours and yours alone. The type of surgery or the type of valve each one of us receiced was the right choice for us.......because in my oppinion we must be cpmpfortable with our own choice.
I personally could go on for hours with a story that sounds a bit surreal. My decision seemed almost handed to me. So many things fell into place when I was going through the final decision proccess.
I chose the RP with the homograph in the pulmonic's position. I am still on Toprol (25mg per day) but then again I am alot fatter than I was when I got the surgery and I have allowed my BP to get elevated. (Am working on fixing that). I guess I am trying to say that the lack of meds is no guarantee...frankly there are no guarantees. That is why I feel so strongly that our personal compfort with the decision is of utmost importance. Once I came to a choice just over three years ago I became calm with the whole idea. Don't misunderstand me we are all human and have our doubts, but after the choice it is all in the hands of God. With me, "The Peace that passes all understanding " did come over me.
Hope my input helps a little.
By the way, who is your surgeon?
Ben Smith
My $0.02
Chilihead,
As I read these reply's to your post I would have to agree that this decision is the hardest part of the surgery. Although, the choice is yours and yours alone. The type of surgery or the type of valve each one of us receiced was the right choice for us.......because in my oppinion we must be cpmpfortable with our own choice.
I personally could go on for hours with a story that sounds a bit surreal. My decision seemed almost handed to me. So many things fell into place when I was going through the final decision proccess.
I chose the RP with the homograph in the pulmonic's position. I am still on Toprol (25mg per day) but then again I am alot fatter than I was when I got the surgery and I have allowed my BP to get elevated. (Am working on fixing that). I guess I am trying to say that the lack of meds is no guarantee...frankly there are no guarantees. That is why I feel so strongly that our personal compfort with the decision is of utmost importance. Once I came to a choice just over three years ago I became calm with the whole idea. Don't misunderstand me we are all human and have our doubts, but after the choice it is all in the hands of God. With me, "The Peace that passes all understanding " did come over me.
Hope my input helps a little.
By the way, who is your surgeon?
Ben Smith
LUVMyBirman
Well-known member
" I am still on Toprol (25mg per day) but then again I am alot fatter than I was when I got the surgery"
Ben, we need to come up with a miracle pill to combat the side effects of 'beta blockers!!!! I can ride my bike until my face is blue....just spinning my wheels. As they cure one il, they cause another.
On the upswing, I am a bit heavier than pre-surgery. But I feel great. All that counts! Hope that is your case as well.
Ben, we need to come up with a miracle pill to combat the side effects of 'beta blockers!!!! I can ride my bike until my face is blue....just spinning my wheels. As they cure one il, they cause another.
On the upswing, I am a bit heavier than pre-surgery. But I feel great. All that counts! Hope that is your case as well.
chilihead
Well-known member
Ben,
Thanks for the input. If you don't mind me asking, how old were you when you had the Ross and how long did your surgeon say it should last. (I know it's different for everyone).
The surgeon I want to do the procedure is Dr. William Ryan in Dallas, Texas. He has done over 160 of them as well as numerous mechanical, pig, etc. He recommended not going mechacnical at my age and with my lifestyle (very active). He said at my age I will probably have another surgery anyway and should avoif the coumadin if possible. I think he realizes I'm the kind of "alpha dog" that will inevitably hit my head and cut myself numerous times in the next 15-20 years!
His offer to put in a mechaicl through the rib bones was appealing, but I have heard that the breast bone heals up in a few months.
Have a good weekend.
Jim
Thanks for the input. If you don't mind me asking, how old were you when you had the Ross and how long did your surgeon say it should last. (I know it's different for everyone).
The surgeon I want to do the procedure is Dr. William Ryan in Dallas, Texas. He has done over 160 of them as well as numerous mechanical, pig, etc. He recommended not going mechacnical at my age and with my lifestyle (very active). He said at my age I will probably have another surgery anyway and should avoif the coumadin if possible. I think he realizes I'm the kind of "alpha dog" that will inevitably hit my head and cut myself numerous times in the next 15-20 years!
His offer to put in a mechaicl through the rib bones was appealing, but I have heard that the breast bone heals up in a few months.
Have a good weekend.
Jim
L
liamty
I awe of you all
I awe of you all
You guys amaze me. I am Liamtys wife. when we met he'd had his avr 2 years prior. His families knowledge was very minimal. I was told he'd had a st judes valve that would last forever. They were most impressed that Dr Victor Chang had done his surgery and that he was the youngest to have had that op at that time (1981). End of story. As years have passed the seriousness of this condition had been slow coming. he had gone 4 years between check ups!! Months between blood tests, and he had a Dr who didn't care. With a change of Dr, a retired specialist, and some symptomatic problems, I started asking questions of the Drs, and became amazed at my husband and his families lack of knowledge of his op, eg my m-i-l was totally unaware that any foods interacted with warfarin. Since then we have had some pretty scary times with complications of normal issues, however we have learned heaps. The bottom line is that your awareness and knowledge blows me away. I am not sure if in USA you are so far ahead of us in Australia, obviously over time things have changed, but we are not given half the infarmation that you guys get! My husbands valve has been leaking for the last 10 years, and eventually needs repairing, probably through keyhole surgery. But his specialist doesnt want to do it until it is urgent, despite our sugestions that he would recover better if he wasn't in urgent need and was a little younger.
Anyway good on you and I hope to continue to learn from you all. THANKYOU.
I awe of you all
You guys amaze me. I am Liamtys wife. when we met he'd had his avr 2 years prior. His families knowledge was very minimal. I was told he'd had a st judes valve that would last forever. They were most impressed that Dr Victor Chang had done his surgery and that he was the youngest to have had that op at that time (1981). End of story. As years have passed the seriousness of this condition had been slow coming. he had gone 4 years between check ups!! Months between blood tests, and he had a Dr who didn't care. With a change of Dr, a retired specialist, and some symptomatic problems, I started asking questions of the Drs, and became amazed at my husband and his families lack of knowledge of his op, eg my m-i-l was totally unaware that any foods interacted with warfarin. Since then we have had some pretty scary times with complications of normal issues, however we have learned heaps. The bottom line is that your awareness and knowledge blows me away. I am not sure if in USA you are so far ahead of us in Australia, obviously over time things have changed, but we are not given half the infarmation that you guys get! My husbands valve has been leaking for the last 10 years, and eventually needs repairing, probably through keyhole surgery. But his specialist doesnt want to do it until it is urgent, despite our sugestions that he would recover better if he wasn't in urgent need and was a little younger.
Anyway good on you and I hope to continue to learn from you all. THANKYOU.
Ross
Well-known member
Hi Mrs Liamty and welcome
I just wanted to tell you that when it comes to Coumadin, I find that there are many Doctors that don't understand the drug much less how to use it properly. We've seen many people come through here from the U.S. that weren't/aren't being anticoagulated properly. It's very scary, which is why we advocate being our own advocates. It seems as though no one but us can really care for ourselves. Knowledge certainly is power when it comes to this stuff. Most people are ignorant of the whole thing. They treat it as if you had your tonsils or appendix removed, some have even said they were treated as if they had been on vacation.
If you'd like to learn more about Coumadin along with everything else you'll learn here, I'd say have a look at Al Lodwicks site at www.warfarinfo.com He is a member here also and is a pharmacist that runs his own Coumadin Clinic--Our resident professional so to speak.
Stick around and learn all you can handle, were glad to have you with us!
I just wanted to tell you that when it comes to Coumadin, I find that there are many Doctors that don't understand the drug much less how to use it properly. We've seen many people come through here from the U.S. that weren't/aren't being anticoagulated properly. It's very scary, which is why we advocate being our own advocates. It seems as though no one but us can really care for ourselves. Knowledge certainly is power when it comes to this stuff. Most people are ignorant of the whole thing. They treat it as if you had your tonsils or appendix removed, some have even said they were treated as if they had been on vacation.
If you'd like to learn more about Coumadin along with everything else you'll learn here, I'd say have a look at Al Lodwicks site at www.warfarinfo.com He is a member here also and is a pharmacist that runs his own Coumadin Clinic--Our resident professional so to speak.
Stick around and learn all you can handle, were glad to have you with us!
Nancy
Well-known member
Hi-wife of Liam-
I'm wife of Joe. Yes, this is a terrific place. We have everything here, wonderful information, thanks to so many members who are researching all the time, wonderful and knowledgeable support, and a little fun thrown in. Please come here often. I know, from my own experiences that it will help you too, and will help you to help your husband as well.
Here's what I have come to understand over the many, many years of living with Joe's extremely serious heart and lung problems. The big picture is that the patient sees the doctor a few times every year. That's really not much, and there is so much that goes on at home, when there is no medical professional there. Granted, the phone is close by and we can always go to the ER, but for the day to day living and maintenance of these kinds of problems, you almost have to have some medical training yourself. So most of us will read and read and read about things and learn how to recognize when something serious is happening.
It can be a lot to handle, but if Joe and I weren't as aware of all of the ramifications of his conditions, I don't believe he would be here.
He has excellent and caring doctors, they handle the big things, but I'm here at home trying to manage the smaller things, such as his diet (which is no salt, and Coumadin friendly), keeping track of how he feels from day to day (vitals are done each day), researching all of the latest developments, interfacing with his various medical specialists and making sure his medications are taken properly and making sure all his prescriptions don't run out.
I also give him injections 3 times per week, Procrit, for his anemia.
I think many people on the site have found that friends and family don't always have any understanding of the problems attached with this surgery and the attending conditions. Our daughters are probably the only ones who understand, the rest of the family knows that he has medical problems, but some of them don't even remember that he's had heart surgery or lung surgery (he's had 3 heart, and 2 lung), they don't know that he has a pacemaker, or that he has CHF, cardiomyopathy, severe anemia, atrial fibrillation, or pulmonary hypertension. So you are among friends when you have found the same lack of understanding.
That's what keeps us coming back here. We all understand and there is no need to explain beyond a simple description. It's a big relief to find people in the same situation.
So I hope we see the both of you often.
I'm wife of Joe. Yes, this is a terrific place. We have everything here, wonderful information, thanks to so many members who are researching all the time, wonderful and knowledgeable support, and a little fun thrown in. Please come here often. I know, from my own experiences that it will help you too, and will help you to help your husband as well.
Here's what I have come to understand over the many, many years of living with Joe's extremely serious heart and lung problems. The big picture is that the patient sees the doctor a few times every year. That's really not much, and there is so much that goes on at home, when there is no medical professional there. Granted, the phone is close by and we can always go to the ER, but for the day to day living and maintenance of these kinds of problems, you almost have to have some medical training yourself. So most of us will read and read and read about things and learn how to recognize when something serious is happening.
It can be a lot to handle, but if Joe and I weren't as aware of all of the ramifications of his conditions, I don't believe he would be here.
He has excellent and caring doctors, they handle the big things, but I'm here at home trying to manage the smaller things, such as his diet (which is no salt, and Coumadin friendly), keeping track of how he feels from day to day (vitals are done each day), researching all of the latest developments, interfacing with his various medical specialists and making sure his medications are taken properly and making sure all his prescriptions don't run out.
I also give him injections 3 times per week, Procrit, for his anemia.
I think many people on the site have found that friends and family don't always have any understanding of the problems attached with this surgery and the attending conditions. Our daughters are probably the only ones who understand, the rest of the family knows that he has medical problems, but some of them don't even remember that he's had heart surgery or lung surgery (he's had 3 heart, and 2 lung), they don't know that he has a pacemaker, or that he has CHF, cardiomyopathy, severe anemia, atrial fibrillation, or pulmonary hypertension. So you are among friends when you have found the same lack of understanding.
That's what keeps us coming back here. We all understand and there is no need to explain beyond a simple description. It's a big relief to find people in the same situation.
So I hope we see the both of you often.
Turkey Hunter
Well-known member
RP and Toprol
RP and Toprol
Chilihead,
I was 27 when I had the procedure. My cardio was actually on vacation when I made my decisiona and had the subsequent surgery. He was actually against it due to one cardiothoracic surgeon at Cleveland Clinic who did not have good luck with the RP. However, when I was researching the different options, I came accross a European surgeon who had performed well over 300 RP's and most of them were on infants. (I was leaning towards the RP but had't found the right surgeon yet) Obviously, if this surgeon can perform RP's on infants with success, he could perform it easily on my larger heart. Long story short, this is the surgeon I wanted and I found he had moved to the US and was working at Cleveland Clinic. Whew.......!
Dr. Petersen's oppinion on the longevity of the RP rests solely on the recipient and how each of take care of ourselves. He believes it can potentially be for life....but just like the rest of the options there are only so many years of data.
And Gina,
Yes I feel good. But my problem with the extra weight is more to the effect that I need about 4 extra hours in each day to be a husband & dad, to accomplish my proffesional duties, and to work out. I can whine all day, but that doesn't get the job done.
God Bless all and I hope my input helps in some way Chilihead.
Ben
RP and Toprol
Chilihead,
I was 27 when I had the procedure. My cardio was actually on vacation when I made my decisiona and had the subsequent surgery. He was actually against it due to one cardiothoracic surgeon at Cleveland Clinic who did not have good luck with the RP. However, when I was researching the different options, I came accross a European surgeon who had performed well over 300 RP's and most of them were on infants. (I was leaning towards the RP but had't found the right surgeon yet) Obviously, if this surgeon can perform RP's on infants with success, he could perform it easily on my larger heart. Long story short, this is the surgeon I wanted and I found he had moved to the US and was working at Cleveland Clinic. Whew.......!
Dr. Petersen's oppinion on the longevity of the RP rests solely on the recipient and how each of take care of ourselves. He believes it can potentially be for life....but just like the rest of the options there are only so many years of data.
And Gina,
Yes I feel good. But my problem with the extra weight is more to the effect that I need about 4 extra hours in each day to be a husband & dad, to accomplish my proffesional duties, and to work out. I can whine all day, but that doesn't get the job done.
God Bless all and I hope my input helps in some way Chilihead.
Ben
chilihead
Well-known member
Ben,
Great to hear your story. It seems like a lot of people on this forum have had AVR and are fairly young, 25-45. However, when I speak to the surgeons they all say things like, "Well I don't have much data for your age group since most of my patients are 60-70 years old". That drives me nuts. I am starting to feel congested and have a wicked cough at night. I have full confidence in Dr. Ryan in Dallas to do the Ross on me. He said they were considering a new option for the Ross that would use a pig valve for the Pulmonary side. I think I'll stick with the traditional cadaver homograft.
I sur ehope yours holds out for life. I hear you about the time. I have a 3 year old and a 4 week old at home, plus work, take care of 7 rent houses and try to ride my bicycle as much as I can to keep up with the young guys!
Best of Luck . I wish I had already had the procedure and could be telling your story.
Regards,
Jim Johnson
Ft. Worth Texas
Great to hear your story. It seems like a lot of people on this forum have had AVR and are fairly young, 25-45. However, when I speak to the surgeons they all say things like, "Well I don't have much data for your age group since most of my patients are 60-70 years old". That drives me nuts. I am starting to feel congested and have a wicked cough at night. I have full confidence in Dr. Ryan in Dallas to do the Ross on me. He said they were considering a new option for the Ross that would use a pig valve for the Pulmonary side. I think I'll stick with the traditional cadaver homograft.
I sur ehope yours holds out for life. I hear you about the time. I have a 3 year old and a 4 week old at home, plus work, take care of 7 rent houses and try to ride my bicycle as much as I can to keep up with the young guys!
Best of Luck . I wish I had already had the procedure and could be telling your story.
Regards,
Jim Johnson
Ft. Worth Texas
Turkey Hunter
Well-known member
Jim,
One of my biggest problems in the hospital post-op was that everyone on the floor was the 60+ age group, with the exception of me and one other fellow.
That was difficult emotionally and mentally for me.
I agree to stay with the traditional replacement for your moved pulmonic. My surgeon stated that if you have good pulmonic blood flow, you can live very well without a pulmonic valve. That was a big reason I went this route. If the homograph goes bad, it may not be as detrimental as fast as if the aortic goes.
God Bless,
Ben
One of my biggest problems in the hospital post-op was that everyone on the floor was the 60+ age group, with the exception of me and one other fellow.
That was difficult emotionally and mentally for me.
I agree to stay with the traditional replacement for your moved pulmonic. My surgeon stated that if you have good pulmonic blood flow, you can live very well without a pulmonic valve. That was a big reason I went this route. If the homograph goes bad, it may not be as detrimental as fast as if the aortic goes.
God Bless,
Ben
C
Christine
Hi Jim.. mine's a simple question, just out of couriousity.. i saw you mentioned your surgeon, I was wandering what hospital you are going to.. I lived in Dallas for 12 years before moving home to PA 4 months ago.. I had my AVR done at Medical City - Dr Mack was my surgeon, he was going to do a Ross procedure because of my age, (36), but my heart was too sick at that time.. didn't think i would make it being on the table that long.. oh, best of luck to you!!!
christine
christine
chilihead
Well-known member
Crystine,
I'm seeing Dr. Ryan at Presbyterian. I go in today for another echo at Dr. John Warners office.
Sorry to hear you could not get the Ross. Had Dr. MAck done many before? Just wondering, how long did he think the ROss would last for you at your age?
Take care,
Jim
I'm seeing Dr. Ryan at Presbyterian. I go in today for another echo at Dr. John Warners office.
Sorry to hear you could not get the Ross. Had Dr. MAck done many before? Just wondering, how long did he think the ROss would last for you at your age?
Take care,
Jim
maxximom
Well-known member
Chillihead
I noticed that you mentioned Dr John Warner.. has he recently moved to Dallas from North Carolina ? There was a Dr John Warner here at Duke that left here in the last year.. just wondering if he is the same one.He was associated with my groups of cardios who specialize in Valve problems..if he is the same one
I noticed that you mentioned Dr John Warner.. has he recently moved to Dallas from North Carolina ? There was a Dr John Warner here at Duke that left here in the last year.. just wondering if he is the same one.He was associated with my groups of cardios who specialize in Valve problems..if he is the same one
chilihead
Well-known member
Joan,
That is the guy. HE came from Duke. I was wondering if he got ran off or just decided to move to Dallas for fun (or Money).
I couldn't find out much about him, but since he was new to the area I was able to get in to see him. My second visit will be today. He seems like anice guy, but he tried to steer me away from the ROSS. He said he had some that went bad and he would hence recommend a mechanical.
Thanks,
Jim
That is the guy. HE came from Duke. I was wondering if he got ran off or just decided to move to Dallas for fun (or Money).
I couldn't find out much about him, but since he was new to the area I was able to get in to see him. My second visit will be today. He seems like anice guy, but he tried to steer me away from the ROSS. He said he had some that went bad and he would hence recommend a mechanical.
Thanks,
Jim
chilihead
Well-known member
Well, I went in yesterday and the Cardio told me I have enlarged enough to have the operation. I will try to do it mid November. He threw me a curve ball and said I should definitely not have the Ross. He recommends the mechanical hands down!
More confusion.
Regards,
Jim
Running out of time
More confusion.
Regards,
Jim
Running out of time
