Happy Birthday Fred and George

It feels impossible that it was a year ago today that Logan was being prepped for his transplant surgery. It seems so long ago and yet pieces of the experience are so vivid for Dave and I. We have been spending a lot of the last two months being reflective on how far we have come. How his life seems so full now and how much he was struggling before. It was hard for us to realize what Logan's personality would be like without huge kidneys in his belly causing him pain and making his quality of life less than that of a healthy kiddo. With Fred, Logan is truly one of the happiest people I know. He is very intelligent and funny. He makes witty jabs at Dave and I constantly. He loves hard and genuinely cares about other people but doesn't care about what other people think of him. He is FUN!

We got to celebrate the anniversary early with Karly and George since we wanted to take Fred to Orlando for Harry Potter world. Logan truly understands the gift that she has given him. I asked him what it meant to have Fred. "Without Fred I would be on dialysis, which was HORRIBLE." He hugs her fiercely when he sees her. It takes all I have not to smother her with all of the emotions that come up in me when I am around her as well. She carries that beautiful smile as a tip of the iceberg into her gorgeous soul.   

As mother nature always seems to encourage it, Logan has forgotten a lot of the experience as it was terrifying and painful for him. I am grateful for this. I do not want him to take too much of it with him. Today he is excited to celebrate his one year anniversary of having Fred, the kidney that changed his life for best. This precious gift has allowed us to take our first long distance vacation in two years to Florida with the warm beaches and Fred's favorite place, Harry Potter World. We are grateful for every day but June 6th will always be a day for celebration! 

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