At this point my PVR is going to be the third week in may. I want to make sure all of the snow is gone from Boston before I have surgery. There is not a huge hurry for surgery.
I felt pretty lousy most of the time until I tried sleeping in the recliner I few months ago. I have more energy and stamina now. I also have moderate restrictive lung disease (TLC 58%) from scoliosis, a left thoracotomy and midsternotomy. Since I have severe left pulmonary stenosis, 85% of my blood also goes to my right lung. Therefore, I don't know if I feel better in the recliner because of my lungs, heart, or both.
I find the decision to do surgery very nerve racking. The timing of PVR in TOF patients is very controversial. PVR has not proven to lengthen life expectency, but it may increase quality. Since I have already had 3 surgeries, it obviously will not be risk free. It will also start the count down for the next intervention since tissue valves do not last a lifetime. Having a PVR in the cath lab is not a possibility for this time because I do not have a conduit in my pulmonary valve and they also want to repair the tricuspid valve. Hopefully the next time can be in the cath lab. The current valve has lasted 19 years.
Here is the problem. I see a pediatric cardiologist locally because there is not an adult cardiologist trained in treating adult TOF where I live. About 2 1/2 years ago I decided to go for another opinion in Boston. I have been seeing both ever since. I don't think that my local cardio sees any reason for me to go to Boston. When I went to Boston last August the cardio told me that it was time in the next year for surgery. She also to my case to the surgery review board. They all agreed that it was time. The reason that she cited for going ahead with surgery was that along with already moderate pulmonary valve regurg and an enlarged right ventricle, my triscuspid valve is now leaking worse by echo. They did not do an MRI on this visit. My exercise tolerance has been stable over the past 2 1/2 years. (VO2 of 17.5-18.1 on bicycle). When I saw my local cardio last week, he had not gotten the reports from Boston. He said the decision was not up to him, but up to me. He did not think the tricuspid valve regurg had gotten that much worse. But, he was comparing this years actual echo to last years notes that he took on last years echo. I thought that was strange. When I asked him about the size of the right ventricle compared to last years, it was minimally increased in size by echo. He said that "we could do an MRI, but we already know that your right ventricle is 3 times the size as normal". Since he previously told me that it is hard to evaluate my right ventricle by echo, and the that size of the right ventricle is one of the most important determinants of timing of the PVR, don't you think an MRI would be helpful. IMHO, he showed me why I go to Boston when he made that comment. They are already planning to do an MRI when I go up there.
I'm nervous because I have not met the surgeon yet and because the MRI has not been done yet. Echos have proven not to be the most reliable test for me. My sister that is coming to be with me is a surgeon and is going to have to close her practice for 2 weeks to be with me. I just don't know that going up there early to have the MRI and meet the surgeon is going to be that helpful. It will cost more money and I will loose more days as work. I just don't know if it is worth it.
I think I just had to vent to folks that could understand.
Debbie
I felt pretty lousy most of the time until I tried sleeping in the recliner I few months ago. I have more energy and stamina now. I also have moderate restrictive lung disease (TLC 58%) from scoliosis, a left thoracotomy and midsternotomy. Since I have severe left pulmonary stenosis, 85% of my blood also goes to my right lung. Therefore, I don't know if I feel better in the recliner because of my lungs, heart, or both.
I find the decision to do surgery very nerve racking. The timing of PVR in TOF patients is very controversial. PVR has not proven to lengthen life expectency, but it may increase quality. Since I have already had 3 surgeries, it obviously will not be risk free. It will also start the count down for the next intervention since tissue valves do not last a lifetime. Having a PVR in the cath lab is not a possibility for this time because I do not have a conduit in my pulmonary valve and they also want to repair the tricuspid valve. Hopefully the next time can be in the cath lab. The current valve has lasted 19 years.
Here is the problem. I see a pediatric cardiologist locally because there is not an adult cardiologist trained in treating adult TOF where I live. About 2 1/2 years ago I decided to go for another opinion in Boston. I have been seeing both ever since. I don't think that my local cardio sees any reason for me to go to Boston. When I went to Boston last August the cardio told me that it was time in the next year for surgery. She also to my case to the surgery review board. They all agreed that it was time. The reason that she cited for going ahead with surgery was that along with already moderate pulmonary valve regurg and an enlarged right ventricle, my triscuspid valve is now leaking worse by echo. They did not do an MRI on this visit. My exercise tolerance has been stable over the past 2 1/2 years. (VO2 of 17.5-18.1 on bicycle). When I saw my local cardio last week, he had not gotten the reports from Boston. He said the decision was not up to him, but up to me. He did not think the tricuspid valve regurg had gotten that much worse. But, he was comparing this years actual echo to last years notes that he took on last years echo. I thought that was strange. When I asked him about the size of the right ventricle compared to last years, it was minimally increased in size by echo. He said that "we could do an MRI, but we already know that your right ventricle is 3 times the size as normal". Since he previously told me that it is hard to evaluate my right ventricle by echo, and the that size of the right ventricle is one of the most important determinants of timing of the PVR, don't you think an MRI would be helpful. IMHO, he showed me why I go to Boston when he made that comment. They are already planning to do an MRI when I go up there.
I'm nervous because I have not met the surgeon yet and because the MRI has not been done yet. Echos have proven not to be the most reliable test for me. My sister that is coming to be with me is a surgeon and is going to have to close her practice for 2 weeks to be with me. I just don't know that going up there early to have the MRI and meet the surgeon is going to be that helpful. It will cost more money and I will loose more days as work. I just don't know if it is worth it.
I think I just had to vent to folks that could understand.
Debbie
