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

Nothing but Smiles

 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. 

We feel your support daily.

Ann & Dave

Donor Considerations

We have been over-inundated with data since Friday. Friday morning I reached out to the transplant coordinator and it's official! My insurance has approved the Doctor's order for a transplant. It was confirmed that I am not a valid candidate for donation which was not surprising news. I happily and quickly settled into my role as advocate on steroids. I ensured that the coordinator ordered the blood work for Logan's first two matching tests for today, Monday, when we were already going to be doing other blood work. I also requested that she schedule the rest of his evaluations for this coming Thursday and Friday. While I won on the blood work, the latter is scheduled for January 26th and 27th.

Immediately following that I called the life donation coordinator. We talked for 30 minutes on what a donor can expect. Below is the criteria and considerations for being a donor. We have had so many people offer to get tested for Logan but after hearing what is involved please read through the below and reach out to me if you still want to donate.

Below are automatic eliminators for all donors:

• Age: First Round (Must be 18-50) Second Round (51-55)
• BMI: <35% :  BMI Calculator
• Blood Type: Logan is O+ so all donors will have to be Type O (Please consider getting testing if you aren't certain)
• If you have or have had: Cancer, CKD, Diabetes, or Hepatitis 
• High Blood Pressure - even if controlled with medication

Process (2-3 weeks):

• Blood Work: Blood Match - has to be O; Tissue type matching
• Only 1 person at a time moves on: CT Scan - where they check the physiology mapping
• Complete Medical Evaluation
• Psycho-Social Evaluation 

Other considerations:

• 2-4 days of healing in the hospital
• 4-6 weeks of recovery at home - Short Term Disability and FMLA may be required. 
• 2-3 weeks after surgery all checkups/follow up appointments are covered by my insurance BUT the remainder of the 2 years worth of followups are from the donor's insurance. 

We are giving you all of this data so that you have as much information as possible to make a decision. After reading this if you are still interested and not eliminated by any of the bullet points listed above please reach out to me one final time to commit to being tested. 

Right now we have Dave, April (my sister), and Jude (my brother) being tested. 

As always thanks for supporting us and we will have a more specific Logan update on Wednesday night.

Ann & Dave.