So I have some rather exciting news. A researcher at Brigham and Women's Hospital called and Mike may be a lifesaver!
Let me back up. As you may recall, after being listed in Boston for a year, we went to Cleveland so Mike could get dual listed there. They had some additional testing and requirements on top of what he had already done at B&W. One of their tests was a cardiac catheter where they inject dye into the heart and surrounding veins so they can see how everything is working. He had this test done at Rhode Island Hospital and when we flew to Cleveland they looked at it and told us that Mike had a "weird vein". I forget the exact words they used but we nicknamed it the "weird vein". It was basically like an extra little vein, which was not a big deal except the surgeons needed to know about it before doing the transplant or else he could bleed to death.
So on his 5th or 6th transplant call (at B&W), we went in, and thought for sure it was the real one. The lungs were good and on their way, he got hooked up with an IV, everything was in motion and the doctors asked, "Is there anything else we should know?" And I said "Well you know about the weird vein right?" And it turns out they did not. RIH knew, the Cleveland Clinic knew, but somehow B&W was out of the loop. So since they did not have the films right there, they sent us home because it was too dangerous. That sucked. We were really disappointed that day, but it may have saved his life.
When he actually got the transplant, they had a cardiologist there and everything went well because they knew what to do about the funky vein.
Sooooo.... this researcher called Mike's parents (I haven't talked to him, so I will clarify when I know more). He somehow decided to study this funky vein because of Mike. He thinks that it is somehow related to CF. People with CF have a higher chance of having the funky vein. So now, there will be an article about it in the New England Journal of Medicine AND they hope to make the cardiac cath a pre-requisite for ALL cf patients who will need transplants! So because of Mike, nobody with this funky vein will bleed out on the operating table. He is a hero!!
Let me back up. As you may recall, after being listed in Boston for a year, we went to Cleveland so Mike could get dual listed there. They had some additional testing and requirements on top of what he had already done at B&W. One of their tests was a cardiac catheter where they inject dye into the heart and surrounding veins so they can see how everything is working. He had this test done at Rhode Island Hospital and when we flew to Cleveland they looked at it and told us that Mike had a "weird vein". I forget the exact words they used but we nicknamed it the "weird vein". It was basically like an extra little vein, which was not a big deal except the surgeons needed to know about it before doing the transplant or else he could bleed to death.
So on his 5th or 6th transplant call (at B&W), we went in, and thought for sure it was the real one. The lungs were good and on their way, he got hooked up with an IV, everything was in motion and the doctors asked, "Is there anything else we should know?" And I said "Well you know about the weird vein right?" And it turns out they did not. RIH knew, the Cleveland Clinic knew, but somehow B&W was out of the loop. So since they did not have the films right there, they sent us home because it was too dangerous. That sucked. We were really disappointed that day, but it may have saved his life.
When he actually got the transplant, they had a cardiologist there and everything went well because they knew what to do about the funky vein.
Sooooo.... this researcher called Mike's parents (I haven't talked to him, so I will clarify when I know more). He somehow decided to study this funky vein because of Mike. He thinks that it is somehow related to CF. People with CF have a higher chance of having the funky vein. So now, there will be an article about it in the New England Journal of Medicine AND they hope to make the cardiac cath a pre-requisite for ALL cf patients who will need transplants! So because of Mike, nobody with this funky vein will bleed out on the operating table. He is a hero!!