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:
Matthew’s team of doctors all reassured us that he was going to receive his call for transplant soon. He was as high on the transplant list as he could be. Weeks turned into months, and our life was spent at the dialysis center, on the road and home. We had a routine and just kept our focus on what needed to be done. We knew the call would come, but we stopped expecting the phone to ring everyday.
Then, during one of our dialysis days, our nurse practitioner came over to our dialysis station with a big smile on her face. She said three words that made me stop in my tracks. “Are you ready?” I asked her “Is it his turn? Do we really have organs?” She smiled and had tears in her eyes and nodded. I couldn’t believe it finally happened. A year of this crazy, exhausting schedule and now there is hope that everything we have been preparing for could finally be here. My thoughts immediately went to this donor and the family of the donor.
We were told we would be admitted after dialysis so I called our family at home and told them what was going on. I had such mixed feelings. I was excited at this chance at a new life, but also felt tremendous guilt that this excitement came at the cost of someones life. I could not imagine what this family was going through, but I felt so much gratitude that they chose to give life to others through organ donation. I could not let myself get too emotionally involved in the specifics. My son needed me to be there for him and I did not want him to pick up on my sorrow or anxiety.
After dialysis we went to the hospital and were admitted. We met with some doctors and were told there was an accident victim and they were determining if the organs are a better match for us, or for another patient. I had not thought of that as a possibility, but as soon as I heard there was another patient there waiting for the same organs as us, I knew there was a good chance this was not our time. The transplant surgeon came back a few hours later and said the other patient was a better match and that the “cross match was positive” for Matthew and we needed it to be negative. He said the antibodies from the donor should be different than the patient to avoid rejection. Ours were the same and it was not worth risking rejection on going forward this time.
I was disappointed, but also relieved. It wasn’t that I was not ready for this journey of daily dialysis to be over. I was just so scared of the whole process and I wanted everything to be as perfect as it could be for Matthew. I did not want him to have a transplant with organs that were not the best match possible. I also found tremendous comfort knowing someone else was getting their miracle that night. We have come this far, we could wait. We had finally received this offer, we knew it really was going to happen and we would get another call.
A few more months of our crazy schedule and we pushed on. On my mom’s birthday, we received another offer. This had to be the one! I had no doubts this time. We finished dialysis and went to the hospital and were admitted to start the process of pre transplant. There was a lot more talk this time about the surgery and more tests were being done. The hours passed by and he was being prepped for surgery. They would be here anytime to come take him down to the OR. It was going to happen! I was so emotionally prepared for this that when I saw the transplant surgeon come in, I didn’t quite understand the words he was saying. I made him repeat it. “Its not going to happen, the cross match is positive. We are going to discharge you.”
I lost it. I could not stop crying. I wasn’t just angry, I was downright pissed off. I was so emotionally invested in this happening right now, I could not allow any other possible outcome. All the months of being positive and calm and rational went out the window. We had a reporter and video photographer following us and our story in hopes to bring awareness to others on organ donation and Primary Hyperoxaluria. We thought it was important to show what a family goes through in hopes that more people would get personally involved and choose to be organ donors. I wanted to tell them this was too personal and I needed time to have my pity party tantrum privately, but then I caught myself and thought it was important for people to see that it is ok to lose your emotions and be upset. It took a good 20 minutes for me to get over myself and realize that this was not the end of the world. Yes, I was upset that our exhausting schedule was still going to continue and I was allowed to have some moments to be upset by that, but I cannot live in that moment. I had to move on and keep pushing on. Someone died and gave life to someone else. It just was not our turn this time. There was no point in feeling sorry for ourselves, we had to be back for dialysis in 6 hours.