It happened yesterday. The official switch from “Daphne may perhaps need one of our kidneys someday” to the absolutely real, unavoidable entry into the Transplant Machine.
We had a five-hour multidisciplinary evaluation at the hospital, and there is no turning back. We feel exhausted, depleted, stressed out but… perhaps a tad relieved? Hopeful? How do I explain that? We know more about the process and information is empowering. We know that we are in good hands. We have been through a lot with Daphne, and this is just one more thing – a big thing, about the size of a fist. Inserted into her tiny abdomen.
We met with the nephrologist, social worker, transplant coordinator, surgeon, financial coordinator, living donor advocate and dietitian. And last but definitely not least, the phlebotomist.
I think as we get deeper into this process I may add a page to the blog to provide some supportive info to those facing (or just curious about) transplant, as we get lots of questions about it every day. Many of our own questions were answered during yesterday’s marathon. Without further ado, I give you Daphne’s first kidney transplant FAQ.
Why does D need a kidney? Does she have some kind of preemie related kidney disease?
When Leah died, Daphne lost most of her blood. They were like two connected pumps in the same circuit and with one heart no longer pumping, D bled out. Doctors acted quickly and saved her, but her kidneys, not fully formed at 27 weeks, were deprived of blood and oxygen for minutes. They did develop some while she was in the NICU, enough to keep her alive and healthy. As she grows (slowly), we know she has very little kidney function. Her creatinine is 5-6 times what it should be. Her kidneys will not get better. She does not have a reversible disease, and she doesn’t have enough functioning renal tissue.
Do kids need to get kidneys from other kids?
No! Kids get kidneys from adults (under 40 years old, preferably). That is why we need D to get bigger. The bigger her abdomen is, the more space for the surgeon to attach the new organ. However, and this is huge, the surgeon said if he needed to do the surgery tomorrow, he could. It wouldn’t be easy, and it would interfere with her quality of life because the big kidney would be in the way of other organs. So… In the coming months we will focus on growth. D will start getting Human Growth Hormone shots in the next couple of weeks. If there is no appetite change and weight gain, we will proceed with the G-Tube.
Once Daphne gets a kidney, will she be completely healthy?
Because Daphne does not have a type of kidney disease that will continue to affect her, odds are her quality of life will improve post-transplant. Growth, appetite, nausea, all these things should get better. BUT. It’s not like this will all be completely in the past for her. She will take immunosupressive drugs forever. Forever, no ifs or buts. Treatment adherence is vital for the longterm wellbeing of the donated kidney. Which leads us to….
Why do one of you need to give her a kidney? Wouldn’t it be easier to get one from a deceased donor?
Kidney transplants are not forever. Kidneys from living donors last twice as long as those from deceased donors. The average lifespan of a living donor kidney is 17 years. In reality, if the kidney is young and healthy and a good match AND the recipient adheres to treatment, it can stretch to something like 30 years. Daphne is two years old. This will not be her only transplant. One of our kidneys will give her a much longer stretch of good health, until she needs another one. Honestly, we did not need any convincing. We have been willing to donate to her since she was born. The difference is then, she was too little and sick. Now, it is viable.
How do we know which of us will give her the kidney?
We may not get to make the decision. If only one of us is a compatible donor, then that’s it. They check blood type and tissue compatibility. Because my blood type is the same as D’s, and Zev’s is O negative, we are both matches for blood. There is a complicating factor. Daphne received many, many blood transfusions while in the NICU, and then later during heart surgery. If her body has developed antibodies against one of our blood types, we have trouble. In that case, one of us will donate a kidney to a stranger, and D immediately goes to the top of the list to receive a living kidney that is a good match for her. Phew.
What about my thyroid cancer?
That was one of my main concerns going in. Apparently, it does not rule me out as a donor right off the bat. I will need a letter from my endo and a copy of the pathology report. It should be OK.
When will the transplant happen?
That is the main question in all our minds. We don’t know. The goal is for D never to be on dialysis. We don’t want her to deteriorate and have the kidney failure affect other organs and her bones. We will keep monitoring her labs. If things start changing faster than they currently are, we will be ready to go ahead with the transplant. We should know which of us will be the donor in the next couple of weeks.
Ask away if you have more questions about this. The entire team is available to answer any of our questions in the coming months, and I am sure you guys will come with good ones we haven’t even considered.