Processing the transplant game plan

Our Hearts

From the responses I received in my last post, "The Time has Come...", I realized I was overly factual and didn't speak to how the family was feeling with this news. That is how my mind works when it comes to PKD and my family. I am black and white. I am either allowing emotion to overrun the practical, tactical, and actionable side of myself or I am solely focused on the “game plan” and how, what, and when we need to take actions to get ourselves from here to there. Let’s see how I do when I try to blend the two together.

Hearing my child has a life-threatening disease really has to be one of the absolute worst feelings in the world. Hearing there is NOTHING I can do to help my child was debilitating for me. I am inherently a person of action. Telling me to wait for anything is going to be met with some anger and frustration. This particular case was no different, and the emotional outrage that I had toward having to wait for Logan’s health to fail was put towards raising awareness, fundraising for research, and reaching out to others to find and provide support. 

Upon hearing we were ready to start the transplant process, joy consumed me to the point of being manic. All of the effort I had put into fundraising and awareness weren’t filling the void I had in my core from being able to tangibly help Logan.  While this direction is not ideal, it is inevitable and I am beyond thankful that we are taking steps to get him healthy.  My entire being is a healthy balance of being excited and terrified. There are risks and uncertainty. What if the 25 named people we have on the list aren’t a match? What if the 3^rd person is a good match and we move forward but person number 17, whom we’ll never get to test, would have been a perfect match and would have decreased his needs for anti-rejection medicine? What if they remove both kidneys and the transplanted kidney doesn’t take and he has to go on dialysis? The ‘what ifs’ are endless.  My mind spends a lot of time mulling these over again and again in my mind. My heart is happy and eager to move forward.

 

As for me being a donor, my mom came to my rescue. Five years ago, when we first found out about Logan, my mom gave me a write up from Aug 6, 1986 (typed on a typewriter) on what my kidney issues were and what procedures I had done to resolve them. My mom had requested this documentation from the nurse and had it signed by my nephrologist at the time. This document that my mother thought to keep for 30 years, in case I might need it, is one of the most thoughtful gifts I have received in my lifetime. This document has been shared with the transplant team and Logan’s nephrologist and they are reviewing whether or not I should be considered for a potential donor.  I have had a partial nephrectomy of my right kidney and my left kidney has two ureter tubes that are tied into one and happen to be flowing the correct direction down to my bladder.  In my head I know I am too risky for an already risky procedure. The parent in me says “take both of my kidneys” as long as Logan is healthy. I would prefer I be on dialysis instead of him.

Logan knows everything that we know. He knows he is ready to start the process to get a new kidney to get healthy. We are presenting this news to him with excitement and happiness. There is no reason for him to worry about things as he doesn’t have another path to choose from.  We want him to focus on the positive of getting healthy. After we told him he immediately asked if the doctors were going to use his ear skin to build him another kidney. Dave and I looked at him perplexed. He went on to explain we had read him ‘a story’ (news article) about scientists that had regrown a pig’s kidney with skin from the pig’s ear. That was about a year ago. The kid forgets nothing. He was visibly disappointed. We told him that his Uncle Jude and Daddy were eager beavers to be the best kidney candidate for Logan. Logan thought about it for a while and decided he would take Uncle Jude’s because he gets to see Daddy every day and this would allow him to have a piece of Uncle Jude with him everywhere. Melt. Logan and I calculated how old I was when I had my surgery (7 years and 128 days) and what date we would need to have his surgery for him to be the exact same age, Feb. 5, 2017.  Logan will be most likely older and wiser than I was when I had my surgery. 😄

Logan has expressed nervousness when it comes to the surgery itself which we have told him is a normal emotion and have reassured him, and ourselves on some level, that the doctors are experts at kidney transplants for kiddos so he is in good hands. Logan has been insistent on getting his picture taken with his bumpy kidneys once they are out of him. Mommy has some work to do to figure out how to make that happen. Logan also believes that once he gets his transplant he will no longer have to take as many medicines.  Currently, he is taking 7 pills a day. We have explained the medicines will be different but he will still be taking meds.  He is very disappointed that the medicines seem to have no end.

Ethan has been a great big brother. He doesn’t understand why he can’t be a donor. He told Daddy his kidneys were too big for Logan and that his would be a perfect fit.  J Melt again. Ethan is struggling to determine how he fits into this kidney picture. He knows he is supposed to look out for his brother but he doesn’t seem to know exactly what that means. He does more than he realizes by giving him very special memories of the two of them playing (and fighting) together.

So overall, the family is trying to determine what this new phase of this disease looks like and how best to navigate it. We are leaning on friends who have been through this already as well as those friends and family who are waiting for us to pick up the phone and tell them how to help. The adventure continues and we are so lucky to have so many people rooting for and supporting us.

Hugs and Love and a happy holiday season to everyone,

Ann & Dave