The MRI will give a good picture of his pulmonary veins and will be able to tell us how well the sutureless repair worked and how it's holding up, or if the stenosis has reoccurred.
The answer as to whether or not this applies to Tyson is very complex. This study assumes that pulmonary vein stenosis is caused by a build-up of cells lining the veins. In some patients, that is true. However, for patients with complicated heart disease, such as Tyson’s, there are other mechanisms which are more likely.
1. The lung arteries are small and underdeveloped, and hence the reduced flow into the lung and out of the lung means that the pulmonary veins are also small and underdeveloped (not likely to be helped by these meds).
2. The pulmonary veins are stretched by other structures or scarred from surgery (again, not likely to be helped by these meds).
I have had patients with the pulmonary vein “disease” which they are interested in, but I think it unlikely that Tyson has this kind of problem and would be unlikely to benefit from these meds (but would have all of the risks). I think we should wait and see what we find on the cath and MRI first, and then decide. I do know these people from Boston.
Dr. Brian McCrindle.
Anyway, Brian and I are both happy to hear that the cause of Tyson's pvs isn't 100% necessarily from an unwanted build-up of cells. We went down to the records department on Wednesday and received copies of ALL Tyson's reports from echos, ecgs, heart catheterizations, MRIs, chest x-rays, etc. I just really want to understand what exactly we're dealing with here. We learned that both his left pulmonary artery and his left pulmonary veins are about 1/3 of the size of his right artery and veins, and he has only 18% blood flow from this left lung. (This was as of his pre-Fontan cath report.) This is substantial. I know that the cardiologist is concerned about this, as he writes in his clinic reports to our family doctor. We also have copies of all those letters too, so we know exactly what we're having to deal with. Now we just have to wait and see what is going to be done about it.
Prayer Request: Please pray that Tyson's pulmonary veins are ok, that the surgery done to repair them was sufficient for him, that the function of his left lung will improve, and that there is no further re-stenosis in the veins. Please also pray for patience for Brian and me as we await his upcoming cath date. Here we go again :(