Sooner or Later

This week has been exhausting. The good news is Dave and I have been sleeping like babies. The bad news is we know more than we have ever wanted to know about kidney transplant. We met with 11 of Logan's transplant team members. The biggest takeaways from this week are as follows: only 6 persons, excluding Dave, Ethan and myself, are allowed in Logan's room to visit during his entire 7-10 day hospital stay, our insurance company can request us to apply for medicare, immuno-suppressant medicines have side effects that are absolutely terrifying, and the surgical options are currently not agreed upon between the surgeon and the transplant nephrologist.

Dave is still in the running for being the donor. We couldn't be happier. Well, we could be if they would move faster. He has his CT Scan next Thursday. After that he has a medical examination; chest xray, EKG, TB skin test and the regular turn your head and cough tests. Then he moves onto consultations with surgery, anesthesiology, and  finally the psychologist. Right now the process seems to be take a test and wait 3 weeks for results. If Dave is the donor my life gets insanely more complicated. I will want to be in 3 places at once; with Logan while he is healing, with Ethan because he will be without his entire family for 7-10 days and to check on Dave and make sure he is ok.

Financially Dave and I have come to grips with the fact that we will hit our insurance's max out of pocket expense every year for the next several years. While this is definitely not the best situation, it can be budgeted at a fixed dollar amount. The good news is we have been planning for this over the last 5 years and have saved donations from family and friends to assist with this. We feel ready. However, insurance can force us to apply for Medicare which makes everything much more complicated. It is somewhat annoying that despite my high premiums, stingy insurance companies can make me go through a lot of red tape because they want to save money not to mention me taking assistance away from someone else who genuinely may need it.

The side effects of the immuno-suppressant medicines Logan will need is terrifying. Ranging from standard nausea to death. Within this span they all cause high blood pressure, "abnormal kidney function", and cancer. Uh... what the heck?! Dave and my expectations of Logan finally being off high blood pressure medicine was squelched with this information. It seems like we are just going to be adding to his list of drugs. His anemia may or may not rectify itself after transplant and if not he will also have to continue weekly shots for the rest of his life. We are trying not to think about the cancer and death side effects due to them be "rare"; however, we know 2 children who have passed away after transplant due to cancer. Maybe we just know a lot of people.

After meeting with both the surgeon and the transplant nephrologist there are two schools of thought on how to move forward with Logan's surgeries. The surgeon wants to do the transplant first, removing the right kidney and inserting the new kidney in one fell swoop. At a later date, he wants to remove the other kidney.  This felt like a good plan when Dave and I spoke with him on Wednesday. On Friday, when we spoke with the transplant nephrologist he was saying it is risky to do another surgery after transplant and he would prefer we remove the left kidney first to see if we can manage Logan's blood pressure by taking out half the problem. This will put a lot of strain on the remaining right kidney and could cause it to lose function faster. The nephrologist then indicated we would take out the second kidney and put Logan on dialysis while we waited for a transplant. Three surgeries sounded ludicrous to us. So, Dave and I proposed taking out the left kidney only after we had a donor identified. Then if we need to remove the right kidney due to drop in function we would just do the transplant when we take out the remaining kidney. We realized we aren't a part of the conversation though when that decision gets made. The transplant team will discuss it and our only decision would be to not do the surgery at all. We were told our opinion would be taken into consideration. Dave and I like having control, especially when it comes to our kiddos. This did not sit well with either of us. In case you are wondering what is involved in a kidney transplant: Animated Kidney Transplant Video

Finally, we aren't exactly sure when all of this will happen now. Logan's numbers improved with his latest blood work. We are still moving forward with finding a donor but were told if his numbers stay high we may not look at transplant until they drop back down. The roller coaster continues.

Logan was on our local news station, WCPO, two weeks ago sharing his book and his story with his classmates. Here is the link if you missed it. WCPO Logan's Bumpy Kidneys

There seems to always be some good news with some bad news. We hold on to the good news as tightly as we can while using the bad news to ensure we are being realistic with our expectations.

As always we appreciate you keeping tabs on our family and this journey we all going through together.

Thanks,
Ann & Dave