What does Perfect mean

I lie awake at 2:00 a.m. thinking over the words "perfect marriage". At dinner tonight with friends this phrase was used to describe Dave and my marriage. To be fair, it was qualified with the adjacent phrase "on Facebook", but I still can't help pondering over what I have said or haven't said to give the indication that our lives together our perfect.

This year especially has been ridiculously difficult for both of us. Stress was the absolute worst it has ever been for us. We yelled at each other so much this year. We both cried to the point where the other was not able to console us. We felt weak and beaten down emotionally and mentally which led us to being mean to each other. We were unsure of decisions we were making for both sons' well being. We didn't appreciate each other enough. We didn't hug each other enough. We didn't take enough time to acknowledge the other's existence and just be together.

I'm worried we have lost some of our ability to connect with each other. Our conversations are infrequent and brief. As the stress diminishes, we will need to redefine our relationship baseline. I'm hopeful we will find a better status quo for our daily interactions.

If I have given the misconception that Dave and I are living some fairytale relationship I have created the wrong perception.  I would never classify our relationship as the "perfect marriage". However, despite all the absolute crap we have gone through with each other and because of each other, especially this year, I choose Dave every day.

Maybe the perfect marriage can have more bad days than good. Maybe it can have yelling at, neglect of, and despair towards your partner.  Maybe a perfect marriage is the realization that relationships have phases and acknowledging daily you and your partner choose each other because you believe the other brings out a better you to be able to conquer life's obstacles tomorrow.

What is your definition of a perfect marriage?

Just another day

More than 3 months have passed since my last post but it feels like yesterday. Logan is thriving. He has gained weight and has grown half an inch. On the 6th of every month, his transplantaversary, we measure him and weigh him. The look on his face when he sees the line move is too cute. He gives himself a little clap each month. I'm so glad he has learned to celebrate his wins. His blood pressure is under control and he is almost 100% off Minoxidil, the 'hair growing' BP medicine. He was at 20mg a day and he is now at 1.25mg a day. We can't disconnect that last little bit without sending his blood pressure skyrocketing again. This is still a huge win. 

When we got out of the hospital we were on 23 pill swallows a day and five liquid medicines. Now we are 9 pill swallows a day and 1 liquid medicine.  We are hoping the steroid and Zantac will be gone at the beginning of December and his Vitamin D numbers will be rock solid by the same time. This will decrease him to only the immune suppressant and blood pressure medicines only. Next month we are supposed to convert him from the Clonodine patch back to Enalapril. I am nervous about this as this medicine was the one that crippled his kidney function the first time. I don't want to hurt Fred. I am not 100% bought into the game plan on blood pressure yet.

Logan had his 8th birthday at the end of September. He had his first sleep over and I honestly think he had the best birthday he has ever had. No one talked about kidneys and he got to be a kid. He swam a lot this summer and enjoyed learning how to dive down to the bottom of the deep end to retrieve missiles.  After he finished reading his Who is Milton Hershey book we surprised him with a trip to Hershey Pennsylvania as our first vacation away from home. He knew all the answers the tour guide asked on the trip. It was adorable. We played hooky from school and work and went down to see the solar eclipse. The boys had an awesome time with Dave off work and made the most of a 'stay local' summer.

Back to school was seamless. Dave went into Logan's classroom and explained what the masks were used for and why Logan may need to wear one sometimes. He also explained that kids with a cough or cold can wear one to prevent their friends from getting sick. Dave also went to Ethan's school but Ethan managed the entire conversation himself. He explained that his brother had a kidney transplant that he may need to wear a mask to try and keep germs away from him. I was so proud of him. He does a great job advocating for his brother. The family, including our donor, got to be on the news evangelizing the gift of organ donation. If you watched it, you got to see how ugly I look when I cry. I didn't even come close to caring.

So overall we are resting into our new normal nicely. Dave is back to work as well which is really helping us all feel like we are back to the daily grind. And even though the whole family has had a cold for a few weeks there have been no fevers and no need for hospitalization. Flu shots were obtained early on to attempt to keep us all protected.

Your love and support got us on the other side of this. I am so grateful for all of you.
Thanks,
Ann & Dave

I Had It All Wrong

Last night I woke up with a wonderful epiphany. I have blogged repeatedly about parents wanting to keep their children healthy and prevent them from having struggles in their life. I have talked about how devastating it was to find out Logan had PKD at the age of 2 and how helpless I felt not being able to make him better. I haven't spoken as much about my other son, Ethan Logan's older brother, who was diagnosed with ADHD - Primarily Inattentive disorder 2 years ago. Dave and I struggled with what was the right thing to do for Ethan. We took an 8 week course (12 hours) through Children's Hospital on how to parent an ADHD child. We put Ethan on a gluten free diet, provided him a life coach, and tried multiple mental exercises to balance his brain power. All of these actions did help Ethan somewhat but the demands of our country's school system came crashing down on Ethan last year in 3rd grade.

Ethan had been crying throughout another 2 hours of homework event for the 3rd time that week. Dave and I sat him down to talk through how it is tough for him but that is why he has to try harder than other kiddos.  Ethan looked up at us through tears and said "I'm stupid. I'm too far behind. I'll never catch up. Isn't there a medicine that can help me the way Logan's medicine helps him?" My heart broke. Dave and I were trying so hard to avoid medication, to teach him coping skills to enable him to work through his diagnosis, but hearing him call out for help in such a mature way we both felt we needed to respect his request and try to find the right medication.

Over the course of the next 2 months we tried 3 common ADHD medicines. While they enabled Ethan to focus in a way he had never been able to do before they caused excruciating joint pain to the point he could not walk. We took him to a rheumatologist who diagnosed him with hyper-mobility syndrome, a condition that causes his joints to hyper extend, insomnia, and coordination of basic physical activities like running to be very difficult. The stimulants in these ADHD medications exacerbated his condition causing swelling and inflammation in every joint of his body, including his spine. This was uncovered at the beginning of April. With Logan's first surgery occurring at the end of April Dave and I sat with Ethan and requested his permission to allow the rest of 3rd grade to happen without medication. We asked him to do his best and allow the family to focus on Logan for the next few months with the understanding that his condition is just as important to us as Logan's. Ethan agreed we could try medication again after Logan's transplant. As promised, in the last two weeks we have uncovered a new ADHD medicine that does not seem to impact Ethan's joints and does give him additional frontal lobe control. He requests his medicine even on the weekends so that he can "hear what we are saying without asking 'what'?".

Between PKD and ADHD I have often felt saddened by the thought of my children's lives being tougher than others. This brings me back to my epiphany. I realized this morning that my job as a parent is NOT to keep them from having struggles or protect them from having bad things happen to them. My job is to teach them how to dig deep and find their inner strength to overcome these struggles they are going to experience throughout their life. As a parent I need to teach them how to cherish truly happy moments because they will know the converse of hardship and pain and struggle and to provide them the tools to laugh even in those hard times because life is too short for self pity. This concept, as easy as it is for me to grasp now, has been evasive for the last 5 years. Maybe it is seeing my children grow into boys versus little kids that has enabled me to take on this new idea so seamlessly. A child at 2 years old versus 7 or 9 years old is drastically different in their mental, emotional, and physical capabilities.  Or maybe the idea has presented itself to me because I have grown over the last 5 years as well and know that I am capable of providing my children more than just a mama bear protector.

This new idea does not preclude the desire as a parent to wish easier life paths for my children, but it does remind me that hard times are presented to everyone throughout their life. I owe it to my kids to show them what they are made of, not continuously show them what I am made of.

The family as a whole is doing well. Logan is growing stronger every day and while we are still on 11 medications the dosage continues to decrease. He is gaining height and weight and does not look like the same child from 3 months ago. Dave has quit his job so that we can manage all of the appointments between both kiddos and I honestly believe is enjoying a summer with his boys. Overall, we are finding a new rhythm to our new norm and are certainly cherishing these happy times.

Thanks for supporting our family. We couldn't have gotten this far without you.
Ann & Dave 

Eye of the storm

These six weeks between surgeries is more terrifying than I anticipated. I can see behind me. How we got here; the fear, the tears, the courage, the strength. I look ahead at the inevitable awaiting us. There is no escape when you are in the eye of the storm. You have to go through.

We have 13 days. Thirteen long days of relying on a machine to keep Logan alive. Watching him throw up because dialysis makes everything taste badly but knowing he needs nutrition to even be approved for transplant. Thirteen long days of "nightmares" and "monsters" that cause so much anxiety for Logan that we have had to lay with him so he can "be safe" and fall asleep. More than 117 pills to take in 13 days. New side effects from immuno-suppressant medicines to start dealing with next week. Arguments with Metlife on FMLA approvals to be had. Discussions with Anthem on denied claims for dialysis treatments as they have said they weren't necessary because Logan wasn't classified as end-stage renal disease. Thirteen days of watching labs and discussing with doctors what needs to be addressed quickly and what will hopefully be fixed with the new kidney. Thirteen days of hearing the clock tick and feeling time move in slow motion. 

I am terrified of the next stint in the hospital and yet I am so eager to get through it. The saying "perspective is reality" has taken on a whole new meaning. Up until this point my perspective has tilted throughout hardships in my life, including my experience with PKD. It is easy to allow yourself to "forget" your kid is sick when hospital visits are not in the picture. Since June 20, 2012 when we first heard about PKD, Logan had been relatively healthy and we are allowed to spend the majority of our time watching blood pressure and feeling normal. The left nephrectory has forever changed how I see this disease. Having seen a glimpse of multiple hospital visits for Logan throughout his life, I think about the wonderful partner or family he will need around him to support him when Dave and I aren't able to be here for him anymore, the financial impact he will face because of a disease that he never asked for, and the pain he will go through multiple times in his life. My perspective has shifted in that health of the people I love is truly the most unappreciated gift I have taken fore granted in my life and I will never do it again. So as I scared as I am I need my little boy to be healthy again. I need him to run and climb and be monster free again. 

June 6th is the day for transplant. Please send all the strength you can our way. I feel every single one of you holding us up and cheering us on.

Thanks,
Ann & Dave Wiesman

Matched perfectly

The search continues for Logan's perfect kidney . Despite how hard it hits when a donor is not eligible, with each candidate our hearts are invested heavily. We have had 20 friends and family offer to be tested and so far 11 have been eliminated. We currently have 4 in the process.  For those who have offered to be Logan's life saver and our family's hero "Thank You" is insignificant to what you have provided for our family. We feel your love and support.

Our current potential donor is at the infamous test that both Dave and my brother did not pass. We are hoping to have a confirmation on the final medical test by next week. After that, due to schedules, it will be another month before the candidate can travel to do the final 3 consults to get a yes or a no on being a donor. Only after that month can we schedule the nephrectomy and the transplant. So we are looking at end of May/end of June respectively. I have challenged the transplant/donor coordination teams to allow for us to embrace technology and do the final 3 consults remotely using video conference so we can get the final yes/no more quickly.  There is no reason in today's world that we HAVE to be face to face to talk to each other. It is safe to say my "mama bear" is in full force right now.

The emotional state of our family is very high. Dave and I have been so stressed for the last four months it is really taking a toll on all of the family. Over the last month a friend indicated that high stress situations over extended periods of time can put an exorbitant level of strain on a relationship. He said his hope was that we were finding a way to make our relationship stronger despite all of the tension. It was honestly the first time I had thought about how Dave and I were operating together. We both have short fuses these days and get snippy with each other, but we are as strong as we have ever been working through this together. At no point have either of us tapped out in anyway. We read each other signals and even when we are both spent for a day, there is an unspoken understanding which one of us needs to step up to the plate on behalf of the other.

In the 15 years we have been together I have known multiple times I was lucky to stand by such a human being. However, nothing can prepare you for watching your child's health dwindle and be helpless to fix it. To physically see Logan morph into someone that is not the happy go lucky sweetie pie for the last 7 years is heart wrenching both of us. When your child is in pain, frail, and emotionally charged due to this disease, being able to adjust your parenting style seamlessly with your partner to accommodate the unknown is truly remarkable. (Or maybe it is just prep for teenage years. :) ) For those that know Dave, you know how funny, genuine, and understanding he is. For those that don't know him, you are missing out on an exceptional person.

I am grateful that my friend shared his vantage point with me. It is so easy to lose ourselves in what needs to get done, we forget about the person standing right beside us helping us navigate through the "how" each day. In honor of Dave, please give a shout out to him and all he does and continues to do for his family. The strength others see in me is 95% because he stands behind me holding me up.

Hugs and Love from our family,
Ann & Dave

Wash. Rinse. Repeat.

I have been waiting to update in hopes that we would have the end to end game plan to share. Sigh.


Wash: Despite Dave's valiant efforts through 3 rounds of testing we were told last Friday he was deemed not a good candidate for kidney donation. Not just for Logan but for anyone. We had agreed if Dave wasn't a match for Logan we would still donate his kidney to someone in need but that isn't an option anymore. Dave's kidneys work 100% when they are together but remove one and independently each only functions at 50%-60%. This means Logan wouldn't get a fully functioning kidney and Dave would automatically drop to Stage 3 renal failure. Not an option.










Rinse: Emotions have gone through an extensive cycle over the last 2 days.  Dave and I had a good cry together on Friday night where feelings of anger and a little self pity were displayed. After a good night's sleep we still were pretty blah the next morning. We talked through the benefits of Dave being by my side supporting our family through the surgeries. I confessed how scared I was with both him and Logan being in the hospital together and Ethan being home by himself that my guilt would have soared to 300 times my normal range wanting to be in all 3 places at the same time. We talked about the benefit of Ethan getting to be with one of us now as we can flip flop between both Logan and Ethan throughout the procedures so they are each getting Mommy and Daddy time. With the help of some wonderful words of encouragement from friends and family on Facebook we grieved our missed possibility quickly and took another deep breath and smiled.

Repeat: Less than 10 minutes after we got the news I had called my brother Jude, the next potential donor in line. With so much love and urgency he immediately answered the phone and said "Am I up?".  Within 30 minutes he was in action and within 5 hours we had booked his flight for testing within the next week. As my sister stated, our family could never be defined as procrastinators. I am so lucky to have such driven people by my side. In 2 days our donor list of candidates has grown from 12 to 18 people. Some of whom are friends of friends and do not know our family at all. This has made me cry. Despite the heart break of Dave not getting approved to be Logan's donor, our hearts are 100% back invested in my brother as the next candidate. When it comes to your kiddos I don't know that parents have the option of being partially invested.

Now that we know the heartbreak, we are ready to Wash, Rinse, and Repeat as many times as it takes to find Logan the perfect kidney.

The Wiesman Family story will be spotlighted through the month of March, National Kidney Month, by the PKD Foundation.  First of several videos and blogs can be found here: PKD Foundation

Much love to all those following along and supporting us.

Ann & Dave

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.