Right Turn !

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.

A New Snag

A new "snag" were the words that Joy heard when her transplant coordinator called last evening. It appears her liver function blood test is elevated. Her doctor has ordered additional blood tests and a CT Scan of her liver which is scheduled for Wednesday, June 27. A drug that Duke prescribed last winter, was an anti-rejection medication that affects the liver. Alcohol could impact the liver but we are guessing this is not the culprit since Joy is not a heavy drinker. Could it be Coca-Cola?

Everyone who is waiting for a transplant has gone through a similar process and we remain positive.

We're Almost There

Joy received a call this morning from the Transplant Team Coordinator to discuss and obtain her approval for additional surgery on her stomach after the transplant. It is called a stomach wrap and is designed to reduce acid reflux, which would otherwise destroy the new lungs if not controlled. The stomach surgery should be performed several weeks after the transplant. She will receive nourishment through a feeding tube and will not be allowed to eat or drink anything after transplant until the stomach surgery is performed. Her decision to agree to this plan was made easier since they will not transplant her without including the subsequent stomach surgery. No burgers, no chocolate, no nothing for weeks! Sounds like fun?

We are therefore anticipating activation as early as this weekend or sometime next week. Once activated, wait time will depend upon the availability of a suitable donor.

Joy continues to participate in the required daily excercise, lectures and workshops and encouraged that she may finally receive new lungs soon. Still an extremely difficult decision.

Update

We talked with the Transplant Coordinator today and learned that the results of one test indicate a need for further evaluation by the entire Transplant Team, which meets next Tuesday, June 19th. We anticipate hearing from the Transplant Coordinator again next week in regards to activation. Joy continues to participate in a daily and grueling four hour Pulmonary Rehab session (she really loves this-NOT), and Wayne attends two weekly caregiver support groups, which is not as grueling as Joy's schedule!

Good News Day

If the remaining tests are satisfactory, she may be placed on the active transplant list next week. The transplant doctor feels that it is possible that Joy will receive new lungs by the following weekend, just a few days after going on the list. We talked with several transplant patients in the waiting area today and they are doing fine after one month and a few years out from surgery. We overheard a man talking that he was a ten year survivor. Fantastic!!

Thank you for all of your prayers and support and we will keep you informed.

Joy, Wayne and Kayce arrived in North Carolina on Sunday afternoon, safe and sound.