OHF Stories is a new initiative from the Oxalosis & Hyperoxaluria Foundation intended to heighten awareness of our rare disease through the stories of families living with it. Our first author is Kristi Ouimet, who many of you may know, mother of two children with PH1.
We invite any family with a story to tell to contact us. The more information available to the public, the scientific community & legislators, the better chance we have for more research, more understanding and, eventually, a cure.
By Kristi Ouimet:
I received a phone call from a surgeon at UCSF one evening and he said they had an offer on potential donor for Matthew, but we did not need to come right it. He said to check in during dialysis the next morning and we would see where we would go from there. I did not even contact my family or call my husband. I just did not feel this would go our way. During dialysis the next day someone came over for some blood work and before going to the hospital to be admitted, they called and said once again “cross match was positive.” When you don’t get your hopes up, you don’t get hurt. We offered prayers to the family of the donor and for whoever was going to receive their gift and we went home. The third time was not a charm.
Finding ways to get our story out helped pass the time. It gave us something to focus on. In the meantime, our relationships grew stronger with the medical staff who were caring for our son. One nurse shared with us her daughters search for colleges and how she was preparing for high school graduations. It was so fun to get to be part of conversations about different colleges and look at the literature and pictures from all the campuses they traveled to. Another nurse shared with us his plans for proposing to his girlfriend and would talk to us about planning the wedding. They even put the wedding on a live video feed so we could be part of it (virtually) and our son was the “honorary virtual ring bearer.” Our primary nurse shared her life with us, we would talk about her two kids and their school days and balancing school with sports and daily life. It was wonderful to be part of someones “normal” life and live vicariously through them. They would bring us gifts from their trips and Matthew was always spoiled with their attention. Molly and Patrick never felt left out. They always found a way to make my kids feel special and important.
There was a 5k Kidney walk in San Francisco on the one day a week we didn’t have to be in dialysis. We decided to participate and we made a “Team M & M” for Matthew and Molly. We had Patrick be the team leader and gave him a medal for being the best brother ever. Our entire family participated and so did our entire dialysis nursing team. We had friends and family come from all over to participate. We all wore Team M & M shirts in different colors and we walked with the giant poster size picture of Matthew. It was a great day.
The next morning, June 3rd 2013, my husband had taken off from work because we were going to meet with the transplant team to discuss the possibility of using a high risk donor for Matthew. We were simply waiting so long and his health was being challenged. As dialysis was nearing the end, the nurse practitioner came over and said, “are you ready?” We said we were ready to discuss the high risk donors and weigh the pros and cons. She shook her head and said, “No. Are you ready for your organs? We got an offer on some organs this morning. They are healthy organs.” My husband got so excited but I took his hand and said we have been here before. Don’t get too excited until we know about the cross match. Cautiously optimistic is the approach we need to take. It was the first time my husband had heard the news from someone other than me so he was beside himself excited. We were admitted and all the labs and ultrasounds and tests were done, but I was still not convinced. We prayed for the donor and their family. We were told it was a 22 year old man who passed away in an auto accident.
Late in the evening, we had a visit from a doctor. I thought this is it, we are going home. He said, the donor had some medication in his system and it needed to run its course before they can take his organs, so we are holding over another day. Sorry, but you will have to hold tight until tomorrow before we know more. The hours rolled by and the next day we were still on, but we had not heard about the cross match. We would be given a time frame, then that would pass and another time give. Finally, Dr. John Roberts came by our room. He was the head of the transplant team and he asked if we were ready or had any questions. I told him I just needed to wait until we knew if it was for sure going to happen for it to be real to me. He said, “cross match is negative. Its going to happen.” That one sentence knocked my wall down. We had never been this far. We called the family and they all came.
They told us we could walk him to the OR and I could go inside with him. My husband and I could bring 2 people with us to the prep area. We chose our other two children. I wanted them to have some special time with their brother. I needed them to spend some time with him while he was still ok because I knew he would be too fragile for them to spend much time with after.
Once I suited up and carried him into the OR, I saw several doctors standing over a table watching as one of them was working on dissecting a liver into two pieces. I thought “I don’t think I am supposed to see that.” I was in awe that part of that precious organ was going to be in my son soon. The photographer from the newspaper who had been following our story, Jane Tyska, was allowed to be in the OR and document some of the surgery.
That was something that was unheard of, but Dr. Roberts knew how important this was to our family and that it could be a great teaching opportunity. I sang “soft kitty” to Matthew as he drifted off to sleep. The doctor nearest me took my hand and promised me they would take good care of my baby and that it was going to be ok. Handing my baby over was the hardest thing I have ever done.