LAB WORK
Over the last 4 years, 6 months, and 22 days, Dave and I have learned so much about lab work and how to read the numbers. What we should worry about and what not to worry about. So much so that Logan's nephrologist, the Director of the Nephrology at Children's hospital, walked into Logan's appt. yesterday and asked us "So, what did you think"? Dave immediately jumped into 'his creatinine levels have gone down'. Logan dropped from 1.24 to 1.20 which was the largest improvement we had ever seen. I brought up his GFR has also improved 37 ml to 47 ml, again indicating a large improvement. Dave and I both knew this improvement didn't move him out of stage 3b renal failure, however it moved him away from stage 2 for now and that had all of us smiling, including the doctor. "The path to transplant will continue as he could just as quickly next month drop back down. We will line the donor up and once we have identified the candidate that donor should be viable for a year", the doc said. Then things got serious.
WORKING A LITTLE TOO HARD
Despite the comfort Dave and I have gained over the years we still get blindsided by data at least every six months. Logan's anemia has gotten much worse. This is due to hyperspleenism, common across patient's with kidney disease. As soon as the doc said this my mental Rolodex was flipping, trying to remember what it was and where had I heard it before. (most likely at one of the PKD Conventions) The look of befuddlement on our faces pushed the doctor forward with an explanation. The spleen is used to remove damaged red blood cells from the body. When it is "hyper" it goes crazy and removes even the healthy cells, causing anemia. Guess what? There is no fix for this issue either. The treatment is to pump Logan full of as many red blood cells as possible so even with the spleen removing cells he will be have enough to spare. This requires a weekly shot that Dave and I will learn how to administer to Logan.
DON'T GET TANGLED UP IN THE NUMBERS
Over the last month, Logan has been feeling so much better. He is not nauseous anymore now that he has a new iron supplement. He is managing all of his medicine himself and was actively listening at the doctor and reminded us he needed to add a pill to his intake last night. (Sadly, I did forget) His appetite has returned. He has grown .6 inches in 2 months which is more than he has grown in the last 2 years. He was the most excited about that one.
Logan is a giver by nature. He gives smiles and hugs to complete strangers, but if he knows you, his arms wrap a little tighter and his smile is a little brighter. This giving nature even applies when it comes to his blood type, O+. Logan contracted this disease randomly with a 1/20,000 chance. I do not know why I was so certain with only a 25% chance of being O+ that Logan would be anything else but. The kid is determined to be unique. Logan is a universal donor which means he can donate his blood and his organs to anyone. The flip side of this is that he can only receive organs from those with blood type O. This has greatly reduced our candidates for being his donor. Please let us know if you are willing to be tested if you know you are blood type O or if you are uncertain of your blood type.
Thank you for continuing to keep up with Logan's and the entire Wiesman family's journey.
Ann & Dave
Mr. & Mrs. Wiesman,
ReplyDeleteI read about Logan's need on WCPO.com and after doing a Google search found your blog. After reviewing the criteria (need O+, but I'm B+), I understand I can't be a donor. My purpose for commenting is to give you strength in your search because I'm sure there's someone out there willing to fill Logan's need.
All my best,
Ryan
Thank you Ryan! Thank you for finding a way to reach out directly. We have the upmost hope that we are just a month away from finding a donor. I wish you and your loved ones health and happiness.
ReplyDeleteAnn