This kiddo is heading for transplantation. We meet this news with uncertainty, fear, and hope. Logan has been taking a very bad turn since July. He is very thin, anemic, uncontrollable blood pressure, and the onset of bone disease. Dave and I got this news on Monday and reacted quickly working with his doctor.
His doctor is amazing and we are so lucky to live in Cincinnati for Children's Hospital. We had an hour strategy session this morning. Dr. D has expedited all of Logan's paperwork in the course of 2 days and Logan is now at the front of the line for transplant process in Cincinnati. We have a lot of work to do before he can be ready for surgery. He is on a new slew of medicines: minoxidil and amlodipine for blood pressure, calcitrate for his bone disease, and a new iron supplement that hopefully will stop making him throw up or feel nauseous all the time.
We have a dedicated social worker, a transplant coordinator, and a living donor coordinator to help walk us through this process. The transplant coordinator has started negotiations with the insurance company and should have sign off from them by the beginning of January to begin donor testing. The first week of January we are hoping to get Dave and I tested. I am almost positive neither one of us will be viable candidates as I have mutant kidneys and Dave is close to 50 which is the cutoff age for consideration. However, we both feel like it is important for us to make sure we aren't candidates. We are allowed to have three people in the testing process at once. Logan will go through 2 days of testing as well after we get him ready for surgery.
After this testing the entire transplant team will decide if his red blood cells are functioning properly. Right now Logan has massive bruising all over his legs. We don't know if they are caused by being a 7 year old or if they are caused by his red blood cells not functioning properly. If it is the latter he will need to get injections to "activate" his red blood cells. The team will also be making decisions on a single or double nephrectomy. This is the removal of one or both kidneys. Both of Logan's kidneys have lengths equal to the length of my head, yes we measured. There is no room for a 3rd kidney. Currently he still has some function, so keeping one would be a safety net. If the transplant failed he may not have to go straight away to dialysis. However the bad kidneys are responsible for his bone disease, high blood pressure, and can still grow with cysts while they stay inside him.
The doctor informed us that sometimes with the new kidney the blood flow will choose the path of least resistance and funnel only to the new kidney. This will cause the PKD kidney to shrivel up over time. This is not guaranteed but would be the best outcome if one of the PKD kidneys is left behind.
Taking out both kidneys feels ideal but it does make us nervous as we never want him to have to go on dialysis. So... no safety net.
We are excited that we are no longer waiting to take action. The next 3 months are going to be stressful and your support will mean more now than ever.
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| BECAUSE IT SUCKS! |
Ann & Dave
My 2 year old has arpkd and we went into the doctor around the same time you did. Your son, and family, have been in my thoughts and prayers. We are headed the same direction. Calcitrate was mentioned in his last Doctor letter, but not to me. Thank you for sharing what you will be using it for. My son has about 40% function. It's dropped around 30% in the last 12 months. Sending good thought, juju, prayers, etc. (Whatever you believe) from Michigan.
ReplyDeleteThanks Jordan! It always helps remembering we aren't alone. More specifically the calcitrate is used for ingesting "activated" vitamin d. Our kiddos' kidneys can't activate it no matter how much we pump into them.
DeleteWhat is Logan'so blood type? I would be willing to do testing if it comes to that. Sorry for this news but glad it does give you a specific goals and a path to get there. Sometimes having that is as good as good news. I am sorry he is struggling but very glad he got you for parents as you have truly been amazing on this journey, not only for Logan but for all those fighting with PKD
ReplyDeleteThank you. Sadly I don't know his blood type yet. I can tell you his creatinine levels for the last 5 years though. :) I'll post as soon as I know.
DeleteWhat is Logan'so blood type? I would be willing to do testing if it comes to that. Sorry for this news but glad it does give you a specific goals and a path to get there. Sometimes having that is as good as good news. I am sorry he is struggling but very glad he got you for parents as you have truly been amazing on this journey, not only for Logan but for all those fighting with PKD
ReplyDeleteMy daughter Kate (has PKD) and I met you and Logan in Orlando in June. Kate proudly displays his book in her dorm room and shares the story with anyone who is interested. She is taking finals this week but texted me about Logans recent challenges as she follows your blog on Facebook. Just wanted to tell you and Logan that we are praying for you and thinking amazing positive thoughts about how everything is going to work out quite well. Your strength and positive attitude are really inspirational!
ReplyDeleteI remember Kate. Logan referred to her as "so pretty". It really meant a lot to him to have a younger person come and talk to him about his disease and also have it too. The last few months have been very trying for me. I am a person of action and sitting around waiting while you can visibly see your child start to be impacted by the disease is heart wrenching. I am so grateful we are moving forward. It feels like the right timing.
DeleteAnn, I think about you and Logan all the time. He is such a strong, brave guy and you are one amazing momma! I'm praying for all of you. May God & the doctors guide you to the right course of treatment and Logan be healthy and happy. Pam
ReplyDeleteThank you Pam. This whole situation is certainly showing me what I am made of.
DeleteWishing Logan and the family all the best. Love from Tyler Hagerty (kindergarten classmate at Goddard who now lives in TN). Sending you hugs, love and prayers.
ReplyDeleteThank you for keeping tabs on us Arianna. I hope your family is well.
DeleteLove y'all...and here for you if you need support and information, as always! (we advocated for removal of old kidneys for many reasons if you ever want to know).
ReplyDeletePS - for 3-6 antigen for a parent match living donor, they would normally do that transplant if donor is in excellent health!
DeleteI donated a kidney to my husband who has PKD 9 years ago. He was down to 6% kidney function. Someone how we were a 5 antigen match! His new kidney began working immediately and his health began improving before he even left the hospital. I pray your son will also see immediate improvement! My husband couldn't have his pkd kidneys out during the transplant. He still has significant pain and they are estimated to be 6-10 lbs each. He could have them out now but it would be another 6 -8 weeks out of work. Remove them if possible but he has done fine with them. If you ever need to talk to someone has been there, please reach out. We are sending prayers to Logan and your family.
ReplyDeleteThank you so much for the data. The doctor has already decided at least one will come out. After reading this I think I may push for two.
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