Long running lab tests have confirmed that Joy has infection in addition to rejection( see previous blog). She mentioned a few weeks ago that whenever she got an infection, she was hoping that it would not be Mycobacterium Avium-Complex (MAC) however that is what she has. It is a slow growing infection that is more difficult to treat since it resides inside the cells and tough to kill. MAC is most likely environmentally acquired and normally found in pulmonary disease patients and in their respiratory track. So, in addition to the high dose of steroids she has received, they added two strong and high dose antibiotics that she must take for about NINE (9) months!
She is still experiencing shortness of breath when walking but not as severe a few days ago. She just doesn't feel good and I think the steroids and antibiotics have a lot to do with that. They are planning a pulmonary function test and more x-rays tomorrow and may be discharged but I will believe it when I see it. She certainly is not anxious to leave but she will be able to continue this same course of treatment at home. Regardless, we will make the Pain Management Clinic tomorrow to seek help with the ongoing back pain issue. Then, Center for Living Thursday and Friday, all day clinic appointment Monday, pre-op clinic Tuesday and surgery on Wednesday. I hope she can handle it all.
I feel so bad for her...............she has not had a real good day in the last six (6) months and certainly not since transplants and the outlook ahead may be more of the same when you add all these issues together. It would be just fantastic to see her have a good day, just every now and then. God, just a few days would be fine........................ for now!
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3 comments:
Our prayers are with you and Wayne. Both of you keep up your good work and strength to continue with this transplant infection and rejection. We will continue with our prayers and thoughts as you go thru another surgery.
God Bless both of you.
Audrey and Betty
I know she is frustrated and tired of being tired and sick. I am sure she just wants to feel normal again. All of us having to watch her go through this...well..it has been and will continue to be difficult. There is no magic wand to make this any easier for her. Please remind her how much we love her and to stay strong as she always has been.
Love,
Caroline
Dear All,
What disappointing news! We all know to expect these setbacks, but that doesn't make it any easier, especially for you two. Hope your pain management team can come up with a better solution. Please tell Joy she's in our prayers.
Love to all,
Steve & Trina
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