Well, it has been quite a while since I updated this blog. Not because Maddy has not wanted me to but because things have been very busy, and mostly stable. I will attempt to update this in a coherent manner and still not bore everyone reading it to death.
Lets start with Maddy’s lungs and the picture on top. The picture is from early February, Maddy went into the hospital on February 1st for a week of in house treatment then a week of iv’s at home. I kept everyone up to date with email’s as I was in Nashville when she went in and didn’t have much time to blog after. The treatments helped her a lot but her lung functions are still very low. Which is the next part of the story. As you are probably aware we have been trying to go through all the hoops to get Maddy listed for a lung transplant. Our efforts are slowly paying off. She has had many doctor visits and tests and there are many still to go. In our last round of visits the doctor gave the green light to switch Maddy from the CF clinic to the lung transplant clinic. Her PFT’s are down to 20% and the doctor said she has about a 50% chance of surviving another two years. Time to get on the list!
Her next appointment was with the social worker who will be working with her through the entire transplant process. Maddy’s support team is in place, me, Melissa, Gram & Grand Bobby and Stephanie are all listed as her support for all the pre and post transplant doctor visits. Her primary care giver post transplant will be Melissa, obviously because she lives with her, but she will be able to come stay at my house any time she wants. I won’t get into too much detail about the post recovery. Suffice to say it will be about a month in the hospital post transplant then three to four months of intense work at home with daily then weekly doctor visits to keep her busy.
The next hoop we have to jump through to get her on the list is an intense two day study where the doctors will go over every inch of her to make sure all her other organs will be able to handle the transplant and the drugs she will have to take post transplant. The main concerns are heart, she will have to get a heart cath before being listed, kidneys and liver. The kidneys and liver are important because of the medications she will have to take after the transplant to keep from rejecting the new lungs. This will be medication she has to take the rest of her life. But she is use to having to take meds everyday anyway.
After the two day work up, her file will be put before a panel of doctors and nurses who will go over everything with a fine tooth comb and make the decision to allow her on the list. If they believe the transplant will give her a better quality of life, extend her life considerably, and she can survive the procedure and recovery process, then they will put her on the national organ donor recipient list. After that we wait for a match. Maddy will have her antibodies tested and typed every month and will not be allowed to be further than two hours away from the hospital. When the social worker mentioned this part Maddy said that a soon as she gets on the list she is going to camp out in the hospital parking lot with a sign that says “waiting for lungs”. That got a laugh!
I think that is most of the information that I have not shared recently. I will try to keep this blog updated as we move further into the transplant process. There is a website that the transplant doctors office maintains where people who have been involved in lung transplants can interact with each other and post information about their experiences with the transplant. Maddy has joined but not spent any time there. I have not either. I will try to get involved and pass on more information from there soon.
