Friday, January 6, 2012
As many of you know, we went to Pittsburgh to have Michael evaluated for a double lung transplant. It was a lot of information and emotions to process. I feel I am now ready to give the details of the evaluation so here goes; First and foremost, the doctors at Pittsburgh do not feel that Michael is sick enough to need a transplant right now but they do agree with our doctors here that it won't be long. The thing that stuck out in my mind with that information is that we will have to watch him get sicker before we can do anything for him and as a mother, that thought breaks my heart. I am glad that we have the option of a transplant but I do not want to watch my child get sicker and struggle even more. There were so many things that we (or maybe just me) were naive about. I knew that transplant is a HUGE risk and is by no means a cure but I had no idea how many pros and cons we would have to weigh. Here are some interesting things we learned: If Michael gets a transplant and a cure for CF comes later, it won't do him any good. Basically, once lungs are transplanted, they will start to degrade at some point. It's just not knowing when. Lungs are complicated because they have access to the outside world. So once he goes through the transplant we have essentially started a ticking time bomb and won't know when it will go off. That is why we are not listing him now. The longer a person can go with the lungs they were born with, the better. His chances are 50/50 seven years post transplant. We know he has a 0% chance if we do nothing so that 50% is looking pretty good. Also, we found out that there is a 10% chance that he could develop Lymphoma due to the T cells being supressed for transplant. That is a type of cancer that responds well to chemo but I had no idea that was a risk. We also asked the best case/worst case scenario question and were told that the best case scenario is that he does well and lives another 10-20 years. The worst case scenario is that he goes into instant rejection and doesn't make it out of the hospital. The good news is there is nothing stopping him from getting a transplant. He doesn't have B. Cepacia or any other bacterias that will keep a transplant from happening, his heart tests came back looking good and all the other test results were well within what would be normal for a person needing transplant. We also found out that Michael would be in-patient for about 2 weeks post transplant (assuming all goes well) and we would have to stay in Pittsburgh for 4 weeks following that so he can be followed closely and checked for rejection. At the 6 week mark, they would take a tissue sample from the new lungs via bronchoscopy and check for rejection. If there are no problems, we could then bring him home. They would follow up with taking tissue samples at 6 months, 9 months, 12 months, 18 months and 24 months post transplant. Pittsburgh did give us a few recommendations of things we could change around for Michael and he seems to be responding well to the changes. He is holding steady with Pfts around 40%, he is no longer receiving TPN due to the damage it was causing his liver and the risk of sepsis from having an open line but we are now having to do tube feeds around the clock. Michael is tethered to a pole for 20 hours a day so he can get his daily recommended 3000 calories. He does eat but there is just no way he can consume enough calories for him to gain weight when his body is burning them working so hard just to breathe. When we got home, Mike and I had a discussion about whether we wanted to go forward with transplant when the need arises and luckily, we both agreed that we want to pursue it. We both feel that we need to give Michael every possible chance. I'm so glad that we were in agreement. It made things at least a little easier. I think the scariest part is not knowing what is going to happen. Obviously, no one can see into the future and tell us exactly what Michael's outcome is going to be but sometimes you just have to take a leap of faith and believe that things will work out as they are meant to be.