I had the Social worker and Surgical consults on April 23rd (same day as the CT Scan). I haven't posted about those appointments for a couple of reasons; one I drove to New Brunswick to pick up my daughter and on the way home, the car broke down in Gorham, New Hampshire. If you have to be "stuck" somewhere, the Mount Washington Valley is the place to be.
The other reason is that I wanted to chat with Craig first.
The Social Work appointment was the second appointment of the day. Her name is Heather, and she is wonderful. Very kind, offered to speak with my daughter if she has any concerns and offered her services if I needed to come back and speak with her again. The appointment was actually very relaxing. She asked me a couple of questions that I hadn't thought about, such as; "Who is your power of attorney?" Oh... no idea. So, please consider that. She asked about insurance, phone numbers, etc. She would be the person making phone calls if something doesn't go as planned or if there are any questions from the doctor while you are in surgery. Sometimes even with all of the tests, there could be something unexpected. She also asked about work, sick days, compensation. If you have a job with limited sick time, you will can apply for compensation through the Trillium program. You can also save all receipts for parking, hotels (if you have to go elsewhere), etc and be reimbursed, to a certain amount.
The last appointment of the day was with the Surgeon. I'm sorry I do not remember his name, it was not the appointment I was hoping for. Brenda came in and spoke with me first to give me the results from the renal scan and the CT Scan. The Renal scan showed my left kidney was quite a bit larger than the right kidney. The left is functioning at 62% and left is 38%. Normal is 50/50, of course. They generally still accept 48/52, but any more disparity and they determine this to be a little too risky for the donor and the recipient. The CT Scan was the final determining factor. It showed the right kidney (smaller), has 3 arteries in and one vien out. Normal is one of each. If the kidneys were both in great shape and operating well, they may take one with two arteries, any more than that, and it becomes dangerous, the surgery becomes much longer and more complicated.
The surgeon came in to see me and went over the same results. He said they would normally take the smaller kidney and leave the donor with the larger, but in my case, that is not possible. They cannot remove the kidney with three arteries and therefore would leave me with just over 1/3 kidney function if they went ahead with the surgery. He left the room for a moment saying, "I don't think we'll get you to sign a consent form".... "Diane??" Then came back and said, "No, we aren't going to put you through that, there isn't a surgeon in our program and none others that I know of that would leave you with that little function." He explained that because the kidney is already smaller and doing so much less of the work, there is a chance that it will not step up to the plate and do more work if the other is removed.
He left me with a tiny glimmer of hope when we left the appointment and said they were having a meeting the next day to discuss this case and see if I would be able to continue in the program. Upon leaving, Mary came out to speak to me, her first words were, "I'm so sorry Sue." At that point I knew this was the end of the road for me and the Paired Donor Program. I received the call the next day from Brenda that I would in fact, not be carrying on with the program and my appointment with the nephrologist on the 29th was cancelled.
I can't really explain how this felt. I was blown away, surprised, nauseous, disappointed, but above all, I was really hoping that this would be the opportunity Craig needed for a kidney. Very unfortunate and unbelievable.
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