We finally got to talk with Avery’s kidney specialist today. There isn’t any new information; just confirmation that we prayed wouldn’t be true.
Dr. Azam looked at her biopsy and she doesn’t think it looks that bad but the tests show it’s not an acute rejection, which means it’s a slow progression to kidney failure. Avery will hopefully go home on Tuesday or Wednesday with a stronger immunosuppressive medicine to slow the rejection process down. We will have to come back weekly to test for the cancer virus in her blood. If there is any increase detected we will have to stop all immunosuppressive meds. We don’t know if the new medicine will trigger the EBV virus or help with the kidney rejection. The doctor said Avery is walking a tight rope and will be monitored closely.
I can tell it breaks Dr. Azam’s heart as it does ours that Avery will lose this kidney. Dr. Azam has been with her since UTMB at the very beginning, so Avery is special to her. She says her kidney function is 25%. Right now, Avery’s creatinine level is a tiny bit down to 2.4 which is good but nothing to be excited about because now we are worried about the EBV level. She is getting that test done tomorrow but it takes several days for the results to come in.
When and if Avery’s kidney function drops below 20% she will be placed on the organ donation list for a kidney. She will be required to be back on dialysis when her kidney function is 15%. I do continue to pray for a miracle and beg for one!
I know there is a lot of questions people may have and we welcome them! There may be questions that we didn’t think to ask so questions are good, ask away. Please feel free to leave a comment and I’ll answer the question as soon as possible!
Q: Will they remove Raul’s kidney when she loses function?
A: No, unless there is an infection issue or problems with the kidney.
Q: How long will Avery be on dialysis this time? Hours? Months?
A: We don’t know until that time arises. They will test different hours and then pull blood and keep repeating until they find the right time. She will be on dialysis until the EBV virus is completely gone and a new donor is found. Avery has a rare blood type so this will be a challenge.
Q: I want to donate my kidney to Avery! What do I need to do to get tested?
A: How awesome!. Avery has amazing family and friends who have come forward to offer to help her. The main and first thing is to go to your doctor and get your blood drawn to find out your blood type. Just to give you an idea, her doctor said the donor needs to be fit, healthy and in shape, good blood pressure, no protein in the urine, non smoker, non alcoholic and drug free. Of course there are other medical tests and cat scans that happen but that comes later. Again, the first thing to do is to find out your blood type and she said we’ll go from there.
Q: How can I help? Will Avery have a fundraiser?
A: Prayers will help! At this time, we don’t have any fundraisers planned. We are very busy with Avery and trying to get her healthy so our free time is limited.
Q: Can we add Avery and your family to my church’s prayer list?
A: Absolutely! The more prayers, the better. Thank you!
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