Like we usually do, we have a lot going on. This is not new. Sometimes it helps to just list it. It doesn’t look as overwhelming to me to write it in a list form as it does sometimes in paragraph form… so here you go!
— G is doing monthly treatments (infusions) to help with the donor antibodies and will until the end of the life of Jody’s kidney. Luckily his kind of rejection is helped by this type of infusion. He reports that he isn’t feeling great a lot of the time right now. Jody says, “We had a good run!” We are at 14 1/2 years.
— G’s GFR is 26. At 20 GFR they talk about / do transplant evaluation and get a plan to get dialysis going. At below 15 they usually begin dialysis. As an adult, it could take 5 years (I think they said) to get a deceased donor kidney. We will plan on asking friends and family to be tested when the time comes. G is my child. I have no issues asking. Zip. Nada.
— We were called about his liver. They are recommending we talk to the hepatology team for a pre-pre liver transplant evaluation. We scheduled it for the end of September. Or the beginning of October? One of those months.
– Q is doing infusions every other week to help her kidney along (not the same reason as Gs but does have stage 4 kidney failure). Her GFR is 27. It’s the same for her, at 20 it’s kidney transplant evaluation time and planning for dialysis. Q is at 12 years in September, also a good run. If not for the Great Kidney Debacle of 2020, we’d have more function, but you know, it’s us.
— We had a follow-up appointment with the adult liver team (they consulted back when we were looking for answers to the itching) and they recommended we get a liver transplant evaluation (adult hospital) for her while we try to figure out scenarios for her liver and kidney transplants or liver/kidney transplant. Living donor or deceased? If deceased, then she doesn’t have two (more) donor antibodies with which to deal. They said they probably won’t let the same live person donate a portion of their liver and a kidney (other centers have though). And also, adults lists for organs. As I have said, just because you HAVEN’T done it doesn’t mean you CAN’T.
— For adults, I guess if you get a liver transplant and you need a kidney within a year you get bumped higher to the top of the list.
— When speaking with the new liver doc (we were pushed to another doc because ours couldn’t make it) I told him that I will absolutely, positively push him/them to think outside the box for her to help with her because of the amount of suffering she’s endured. He said, “Well, that is obvious since she had the bile diversion.” Glad we understand each other.
— Need to get referrals from our pediatrician for adult evaluations for Q.
— I want to investigate would it would take to keep her under pediatric care for a little bit of extra time, as one of my biggest worries is us having to switch teams, etc. in the middle of her being evaluated tested or getting a single or double organ transplant. True to form because we are who we are, it’s complicated.
— Q is trying acupuncture for her (parathe or dysestha)-hesia.
People have reached out to us offering to be tested. We aren’t at that point yet but when we are, you are the first people we will contact. We are so grateful you will even consider it!
