Aggie85
Well-known member
This thread is for those of us with Tetrology of Fallot (TOF) AND other Adults with Congenital Heart Defects (ACHD) to discuss valve replacement issues unique to our patient group. A quick search shows we are here also posting but scattered among the general population mostly in the Heart Talk Forum. The search engine said there was a forum for Child issues as well but I don't see it listed on the forums list anymore. I don't know if it's on another site or one that was dropped, or I just missed it. I thought it would be interesting to see how many of us there are coming to this site and to offer each other a place to discuss issues unique to our group. Are there enough of us to maybe ask for or benefit from a new forum specifically for non-bivalve aortas ACHDs looking at valve surgery?
TOF is the highest group of ACHD patients currently needing valve replacements (this was stated in some of the literature I reviewed before my surgery, but I don't know if that includes all the folks with Bicuspid Aortic valves, which is also congenital). The TOF population is pretty much always needing Pulmonary Valves which is a very small subset of patients needing valve replacement. Because of that, it is difficult to find information regarding these valve replacements.
When I was first researching getting this valve replaced, I quickly learned how few people were in our sub group but that also this group is growing as more Cardiologists are finding out that our leaking Pulmonary Valves need to indeed be replaced. I even had a Pharmacist friend who used to run a Coumadin Clinic tell me Pulmonary Valves are never replaced and I must have it wrong. He was also the first to accidentally (he kept saying there are no Pulmonary Valves on the market) let me know that there are not valves specifically made for the Pulmonary position because there are so few patients in our group compared to the overall heart patient population. Luckily I saw the ad on the top of this site for the OnX valve and contacted the company to see if anyone was using it in the Pulmonary position. Through them I was quickly led to Dr. Pettersson at Cleveland Clinic and am now the recovering, proud owner of a OnX valve in the Pulmonary position. No more crazy railway station murmurs and hopefully soon no more enlarging, arrhythmic heart!
To get this started... A little, I'll try to be brief, about me. I was one of the first infants to survive this defect. Back in the early 1960s most cardiac babies were sent home for the couple of months before they died and that was that. My parents were told to drive from Tucson, Az to El Paso, Tx to go see a cardiologist and that I would probably die along the way but to press on, so that the Drs could find out what kind of heart defect I had. I miraculously made it to the Dr and through the night. The Drs then brought in a surgeon who offered the only ray of hope. They were willing to try a new procedure being done at Boston Children's hospital. The surgeon had only done this two other times and on infants much bigger and stronger than me. One died and one made it. As I would die anyway without the attempt, it was decided to try. The procedure is no longer done, but a sort of rubber band was placed around my Pulmonary Artery above the valve to basically force blood back through the VSD and relieve the stress on my lungs and get more oxygenated blood to my body. This was a stop gap measure to try to get me big enough to later attempt the full repair and ended up damaging my valve, but it worked to at least keep me alive. I have no idea who this Dr. was as my early medical records were all lost, but his willingness to at least try, saved my life. Five years later I was just barely big enough to be placed on the heart lung machine and the first attempt at correcting my major defects was made. Unfortunately, it only temporarily worked and 11 months later I was again in congestive heart failure and in grave condition. Dr. Denton Cooley was the only surgeon in the country willing to take my case and attempt a 3rd OHS to again repair the VSD and Pulm. Outflow tract. HE DID IT BEAUTIFULLY! I grew to become an active adult who lives a full life with 2 healthy children!
I rarely saw myself as having a heart issue, unless stopped from doing something like scuba diving because of my residual issues.
In the 1980s, until I started having children and my military hubby started moving every couple years, I worked as a Pediatric Cardiology RN at St Louis Children's Hospital. One of the things I cherished was being able to give parents hope that their children could survive these major defects and grow up to live productive lives and I was living proof. As I was researching the literature on TOF valve replacements, it occurred to me that the patient population most being studied now for these surgeries are the very children I took care of in the 1980s!
If you would like, please share your story or your child's and ask questions of those of us here with similar issues who may have information pertinent to your repair. I'd like us to see how many folks there are interested in this thread and to see if there is enough need to justify looking into adding a new forum. I sincerely hope I'm not stepping on any toes by suggesting this. I know when I was originally looking, I sort of blew past this site because I felt it didn't have much to offer someone with my valve issue except for the ad at the top of the page. I'm so very glad I came back to the site, via the OnX valve's website because it HAS BEEN a huge help post op. This is a group of patients who will be growing as more are getting to the stage that these damaged pulmonary valves need replacing.
Thanks for reading through this introduction. I look forward to hearing from any others out there with similar issues.
Linda
TOF is the highest group of ACHD patients currently needing valve replacements (this was stated in some of the literature I reviewed before my surgery, but I don't know if that includes all the folks with Bicuspid Aortic valves, which is also congenital). The TOF population is pretty much always needing Pulmonary Valves which is a very small subset of patients needing valve replacement. Because of that, it is difficult to find information regarding these valve replacements.
When I was first researching getting this valve replaced, I quickly learned how few people were in our sub group but that also this group is growing as more Cardiologists are finding out that our leaking Pulmonary Valves need to indeed be replaced. I even had a Pharmacist friend who used to run a Coumadin Clinic tell me Pulmonary Valves are never replaced and I must have it wrong. He was also the first to accidentally (he kept saying there are no Pulmonary Valves on the market) let me know that there are not valves specifically made for the Pulmonary position because there are so few patients in our group compared to the overall heart patient population. Luckily I saw the ad on the top of this site for the OnX valve and contacted the company to see if anyone was using it in the Pulmonary position. Through them I was quickly led to Dr. Pettersson at Cleveland Clinic and am now the recovering, proud owner of a OnX valve in the Pulmonary position. No more crazy railway station murmurs and hopefully soon no more enlarging, arrhythmic heart!
To get this started... A little, I'll try to be brief, about me. I was one of the first infants to survive this defect. Back in the early 1960s most cardiac babies were sent home for the couple of months before they died and that was that. My parents were told to drive from Tucson, Az to El Paso, Tx to go see a cardiologist and that I would probably die along the way but to press on, so that the Drs could find out what kind of heart defect I had. I miraculously made it to the Dr and through the night. The Drs then brought in a surgeon who offered the only ray of hope. They were willing to try a new procedure being done at Boston Children's hospital. The surgeon had only done this two other times and on infants much bigger and stronger than me. One died and one made it. As I would die anyway without the attempt, it was decided to try. The procedure is no longer done, but a sort of rubber band was placed around my Pulmonary Artery above the valve to basically force blood back through the VSD and relieve the stress on my lungs and get more oxygenated blood to my body. This was a stop gap measure to try to get me big enough to later attempt the full repair and ended up damaging my valve, but it worked to at least keep me alive. I have no idea who this Dr. was as my early medical records were all lost, but his willingness to at least try, saved my life. Five years later I was just barely big enough to be placed on the heart lung machine and the first attempt at correcting my major defects was made. Unfortunately, it only temporarily worked and 11 months later I was again in congestive heart failure and in grave condition. Dr. Denton Cooley was the only surgeon in the country willing to take my case and attempt a 3rd OHS to again repair the VSD and Pulm. Outflow tract. HE DID IT BEAUTIFULLY! I grew to become an active adult who lives a full life with 2 healthy children!
I rarely saw myself as having a heart issue, unless stopped from doing something like scuba diving because of my residual issues.
In the 1980s, until I started having children and my military hubby started moving every couple years, I worked as a Pediatric Cardiology RN at St Louis Children's Hospital. One of the things I cherished was being able to give parents hope that their children could survive these major defects and grow up to live productive lives and I was living proof. As I was researching the literature on TOF valve replacements, it occurred to me that the patient population most being studied now for these surgeries are the very children I took care of in the 1980s!
If you would like, please share your story or your child's and ask questions of those of us here with similar issues who may have information pertinent to your repair. I'd like us to see how many folks there are interested in this thread and to see if there is enough need to justify looking into adding a new forum. I sincerely hope I'm not stepping on any toes by suggesting this. I know when I was originally looking, I sort of blew past this site because I felt it didn't have much to offer someone with my valve issue except for the ad at the top of the page. I'm so very glad I came back to the site, via the OnX valve's website because it HAS BEEN a huge help post op. This is a group of patients who will be growing as more are getting to the stage that these damaged pulmonary valves need replacing.
Thanks for reading through this introduction. I look forward to hearing from any others out there with similar issues.
Linda
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