ACTIVATED! ACTIVATED!
Joy received a call from the Transplant Team today to advise that the liver scan and blood tests came back normal and she was FINALLY put on the ACTIVE waiting list. This means that she will receive the double lung transplant at any time a suitable matching donor is located. This usually happens in hours, days, weeks and sometimes months. Now, we must really be close to the phone (s) and within an hour of the Duke University Medical Center! We have heard that they will prioritize Idiopathic Pulmonary Fibrosis (IPF) patients such as Joy, so the "real" waiting begins. In the meantime, she will continue her daily rehabilitation (walking, weights, bikes, mats, machines and vitals) until she is transplanted. Kayce and Wayne continue the strenuous daily grind of shopping, swimming, sightseeing, visiting Duke campus including Cameron Indoor Stadium, the Duke Chapel and transporting Joy. Our temperatures are running in the high 90's and we long for the Chicago weather.
Currently, the four people that are on the ACTIVE list have each had a dry run. When Joy receives the phone call that a suitable donor (identified by size and blood type) has been located, she must report to the hospital immediately. During this time, the Transplant Team is harvesting the donor's organs, obtaining donor history, if available, and performing tests and evaluation. During this time, Joy will be prepped for surgery. If for whatever reason, the Team determines these organs are not suitable, Joy will be sent home and remain on the ACTIVE list until another suitable donor is located. A "dry run" can involve a six to ten hour wait and preparation time.
Surgery can last nine to twelve hours and hospitalization varies, but may be up to a month. Joy verified today that she will not be able to eat or drink ANYTHING after transplantation, until the stomach wrap surgery is performed several weeks later. She will receive her nutrition through a stomach feeding tube and medicines by IV. After the stomach wrap, she will slowly begin a liquid diet progressing each week to solid foods (chocolate and Coke?).
Ultimately, as you know by now this is ALL subject to change, so stay tuned.
4 comments:
Joy- Just in time for the 4th! 9 am Pulmonary Rehabbers read and discuss your blog daily! This is so exciting! Breathe easy!
Judi, RN
Joy, I am thrilled to hear the good news! Dad and Mom called before I got on the computer today so I am feeling very informed, which I like. Now I know what to pray for! I guess you will be eating as much of your favorite foods for as long as you can or do you have to be careful of what you eat on top of all of the other rigors? The "dry run" thing sounds interesting, but at least they tell you everything that could possibly happen so that's good. We'll just hope that you don't have to go through that. Keep the faith!
Love,
Laraine
Joy, Audrey and I are always watching to see the latest news. We will keep you in our prayers that everything goes quickly and that you don't have to wait much longer. The no eating thing after the transplant does NOT sound like too much fun but a necessity. We Love you and will be praying for you. As Always Betty Frank & Audrey Wood.
I have been thinking about you all day. I know that you are in God's hands and that you are comfortable with that. Nevertheless, this certainly isn't easy on you or anyone in the family. You and your family are loved very much! Laraine
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