Whether metaphorically or literally speaking, we have all faced mountains in our lives. Sometimes we choose a particular peak and set off on an adventure to the top. Other times a mountainous problem is thrust upon us to overcome. It takes determination and inner strength to get to the top; qualities many of us with PKD possess. Part of the excitement of life is its hills and valleys. As we stand at the forefront of a mountain placed before us with our head tilted back looking towards the sky, it is natural to question, “why is this happening to me?” I hope our will to survive, faith, friends and family, assure us that we can rise to the top of challenges as high as the Himalayas.
Our own actions, exciting news or the kind gestures of others can make us feel on top of the world. I am still processing an amazing act of kindness I learned of this week. I received a message from Maciej Cichocki, an ARPKD father. His son, Fryderyk, is a young boy with ARPKD who received a kidney transplant. This past November, Maciej set off on a month-long adventure from Poland to Nepal. His trek – full of passion and purpose – led him to Thorong-La Pass in the Nepal Himalayas. He emailed me to let me know that at the top of the pass, which is 17,769 feet above sea level, he placed a prayer flag for his son and for myself. On the prayer flag for me, Maciej wrote, “Valen – PKD Will Not Beat Me.”
Maciej said that he believes in consciousness and involvement. How concentrating on real needs and marking them were one of the reasons he placed Nepali prayer flags. It was a way to quietly mark his thoughts. He said this act was him putting a sign of his highest interest. I have never met or connected with Maciej other than through this blog. My gratitude for Maciej including me on this magical and meaningful journey is immeasurable.
There is something miraculous about standing atop of a mountain. The quietness is soothing yet invigorating. I feel very at peace, like when I stood on top of Glacier Point at Yosemite National Park where Noah and I got married. When having such a majestic bird’s eye view of nature, my to-do list vanishes and I focus on what really matters in life. The simple pleasures. The gift of life.
Maciej chose to courageously ascend a huge Himalayan mountain. He would like to visit the Thorong-La Pass again in a few years with his son. This will be a wonderful trip for the two of them to look forward to and to experience such wonder together, including the spot where Fryderyk’s prayer flag is displayed. I wish I could be there on that momentous day, however, I know I will be there in spirit. I am honored to have been a part of Maciej’s amazing feat. I smile, envisioning a prayer flag with my name on it waving in the wind on top of a mountain in Nepal. Maciej said that he agrees with me in that only by taking the time to describe your feelings and circumstance, can others feel that they are not alone. Never underestimate how far your message and spirit can soar. Thanks to Maciej, my spirit and “our” message, PKD Will Not Beat Me, is soaring high up in the Himalayas.
What message would you write on your prayer flag?
If I were to flip a coin in the air I would have the same chance of getting a heads or tails as I did in inheriting PKD. When dealing with health hardships I have the choice to be bitter or get better. No matter what each new day brings, I can focus on the challenges in life or strive to find the positive. As a PKD survivor I can be ungrateful or thankful. I choose to get better, to find the positive, and to be thankful.
When being diagnosed with one of the most common life threatening genetic disease at the age of 10, it may seem impossible to be thankful for something of this magnitude. The patient, the parents nor the family are thankful for such news. As a 10 year old, I was too young to digest how PKD would have an everlasting impact on every day for the rest of my life. Throughout all of the years, surgeries and pain, there is still much to be thankful for.
PKD has shown me how our bodies are not only mysterious but also miraculous. Also, that my 5’ 3” body is stronger than I would have ever imagined. PKD led me to sharing my story which enabled me to realize my love of public speaking and writing. I have met amazing people and experienced life-altering moments and events thanks to PKD. After spending nearly a year in the hospital, I was given a whole new appreciation of each healthy day at home. Being part of a miracle–such as receiving the gift of life–is humbling yet invigorating to live every moment as if it were my last.
Through all of my gratefulness, I still find myself letting my imagination run wild. I sometimes play the ‘what-if’ game and imagine what my life would be like minus PKD. What if I did not have PKD? What if I had been a “normal” high school girl and could have played sports? If I had been able to complete college, what would my degree have been? Would my life have painted the “normal” life as a married 30- year-old, with a house, fabulous career, and children? Then I open my eyes, come back to reality and realize this game is not fun. “Normal” was obviously not the intended path for me and I’m thankful for that.
I have always fully accepted and embraced that I have PKD. I try not to compare my life to others, knowing that is wasted time as I have the power to make the best of this life of mine. Not associating a timeline to my PKD– like when I might need another transplant– helps me focus on the present which is the only thing I have control of. PKD has taught me many lessons and afforded me numerous things in which to be thankful. We have the power over some 50/50 odds in our life and I hope you will join me and choose “thankful.”
Although we do not have the capability of altering our genes and removing PKD from our lives, we do have the power to focus our energy on the good in life. In honor of Thanksgiving, please take a moment to reflect on what you are thankful for. Please help encourage others by sharing your grateful thoughts.
Noah and I were filled with excitement and our hearts were overflowing with joy that we could barely sit still. It was November 3, 2013. We were sitting side-by-side in the front row of the greenhouse at Historic Shady Lane in York, Pennsylvania. It was a splendid autumn afternoon. The colors of the leaves were vibrant yellow and orange. We found ourselves taking many deep breaths to soak in the crisp smell of the fall air. We were minutes away to witnessing my brother-in-law, Kermit Keefer, and my best friend, Trinity Walker, marry each other.
As my eyes scanned around the greenhouse, I felt like I was on the set of a movie, for several reasons. One of which was being the ambiance and the dynamo cast of fabulous attendees. The greenhouse was mystical, magical and romantic. One would describe it as a whimsical woodland and an enchanted forest. Delicate flowers and ferns hung from the ceiling. Gold-plated deer antlers wrapped around the chandeliers and white feathers dipped in gold glitter hung above us and added to the enchanting spirit.
I drifted off into my own thoughts for a minute. I reflected on how all of this came to be. How Trinity, my best friend, and Kermit, my husband’s brother, were getting married. How my kidney donor was a guest at their wedding. How amazing life is. I thought back to eighth grade when I was sitting in the lobby of West York Area Middle School. I was wearing a pair of blue, green and white sneakers. They happened to be guy shoes. I was sitting next to Emily Kerrison on that fateful day. Emily and I looked at each other, looked down and noticed that we were wearing the same sneakers. We laughed, as we both knew they were not girl shoes. From that day on, we were friends.
Years later, it was Emily Kerrison’s mom, Sally Robertson who donated her kidney to me. Emily Kerrison is now Emily Cover, because she married my brother Brandon. I met Trinity through my kidney donor, Sally, because Trinity used to date Sally’s brother. Trinity photographed the book launch release party of my biography, “My Favorite American” by Dennis McCloskey in 2008. Trinity and I have been friends ever since. Last year, Noah’s brother Kermit bought an RV and wanted to go on a cross-country adventure from PA to CA and back. The only thing he was missing was a co-pilot. Kermit and Trinity both live in PA and Trinity wanted to come visit me in CA. Trinity and Kermit had never met, but I thought it would be a great idea for her to hitch a ride with Kermit. Well she did just that and the two of them fell in love during their cross-country adventure. Kermit not only got a co-pilot for his trip, but a co-pilot for life. I don’t believe in coincidence. This chain of events happened for a reason. I sat there thinking that the common denominator to a couple of marriages, happiness for many, and my life being saved was a pair of guy shoes that brought Emily and I together.
I smiled and reached for Noah’s hand. I looked around and felt happy as I saw Noah’s family, Trinity’s family and my dear parents all in the same room. I glanced to my right and made eye contact with my precious kidney donor, Sally. She gave me an endearing smile and put her hand over her heart. Sally’s body language and aura brought instant tears to my eyes. At that very moment I felt an invisible but strong warm embrace around me letting me know that everything is going to be ok and that everything happens for a reason. The captivating music of the ceremony began. I turned around in my seat in anxious anticipation for Kermit and Trinity to start their lives together as husband and wife and knowing that this is just the beginning. Our intertwined lives and magical story is not finished, but rather yet to unfold.
“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.” -Steve Jobs
Do you have a story to share that exemplifies that eventually all of the dots will connect?
The past week-and-a-half has been trying, insightful, painful, comforting and mentally exhausting. Life is full of challenges and triumphs. Times of celebration and of sadness. Certain moments that test us while others provide immense encouragement. I continue to remain true to myself and determined to find the bright spot in every day.
Last week I had to fly from my home in northern California to Pennsylvania for a deposition and four doctor appointments, one of which was eight hours long. My husband, Noah, and I mentally prepared for this trip knowing that it would be a whirlwind visit and emotionally and physically exhausting. Before our plane took off, I put out positive energy for safe travels and manageable pain. I am thankful to be back home after accomplishing all appointments and the long days of travel.
While the days were draining, lengthy and painful, Noah and I continued to find the bright spot in each one: Seeing the beautiful Pennsylvania fall colors and smelling the autumn air was soothing for my soul. Noah and I eating a sweet bologna and American cheese sandwich in a parking lot between appointments. Being able to hug my mom and dad, see my kidney donor, my immediate family, relatives, friends, and witness my brother-in-law and best friend get married. These were all silver linings and brightened our days.
The deposition I went through was for a motorcycle accident in which I was involved as a passenger in 2007. During last week’s visit, Noah and I had to drive through the intersection where the motorcycle accident took place. It was eerie to cross through the same path in which I laid unconscious six years ago, however I am so grateful to be alive. I was questioning my actions of May 30, 2007 and said to Noah, “What if the driver of the motorcycle, Bob, and I would have made a different turn that day and would not have been at that intersection at that very moment in time?” Noah said, “But what if there was a dump truck driving up behind you that day instead of a car?” This profound comment instilled that no decision we make is wrong. It is all part of the circle of life.
Thirty-two years ago today, my grandmother, Pauline Shellenberger, passed away at 3:25 a.m. due to complications of PKD. I am sorry for my mother’s painful loss. I am remorseful my grandmother passed away two years before I was born and that I never had the opportunity to meet this remarkable woman.
It is certain that today is a gift which we have been granted. No matter if we are perfectly healthy or living with a disease like PKD, our lives will not be smooth sailing. A guarantee is that we will be tested and faced with change. Whether today tests us or calls for celebration, let’s smile, let’s find a silver lining, let’s uncover a bright spot.
Life is full of choices and decisions. Life leads us down many different paths. Some turns we have full control over. Others we are swept up by a strong unwanted gust of wind and dropped right in the middle of unknown territory. PKD can force us to make big decisions in life and to make sacrifices. PKD can make us stronger with steadfast values. We learn from our choices. We grow from our decisions. Although we are in different phases on our PKD journey, we fight together, are stronger together and are one family united together.
One of our fellow PKD fighters, Stefanie Staggs (Stefanie Long), is in the midst of making big life decisions. She is 27 years old and lives in Nashville, Tennessee. She was diagnosed with PKD when she was 23 years old. Elevated heart rate, chest and side pain led her to the doctor’s and her eventual diagnosis of PKD. Stefanie’s father passed away at 33 years-of-age from a ruptured aortic aneurysm. At the time of Stefanie’s diagnosis, she had never heard of PKD. Her sister went to the hospital where their father passed in 1991. They obtained a copy of his records which said he had bilateral kidney cysts and PKD and that all family members should be screened. They were never told this information. Fortunately, Stefanie has full kidney function and only occasional back pain from her enlarged left kidney.
Stefanie is the only one in her family living with the disease. She wants to do anything in her power to stop this disease from spreading further in her family tree. She desires to have children and to save her kids the heartache that typically comes from having PKD. These strong emotions led her down the path of pursuing pre-implantation genetic diagnosis (PGD) and in vitro fertilization (IVF). She received the thumbs up from her nephrologist that it was safe to pursue this route and pregnancy.
She learned of PGD while online researching pregnancy and PKD. Stefanie’s explanation of the process is that you go through the typical IVF process like someone with fertility issues would. After stimulating your ovaries with medications, multiple eggs are retrieved and are fertilized with your partner’s sperm. The embryos that fertilize and survive five days can then go through PGD testing. PGD testing is completed with a test that is made weeks before you go through the IVF process. A test is developed based on cheek swabs from you, your parents and your husband or partner, as well as a genetic blood test. Her father’s hospital records were also sent showing the PKD connection. The test identifies the exact gene and chromosome in your body affected by PKD. The embryos can then be tested to see which embryos are/aren’t affected by the disease. Then the embryos that don’t have the disease can be transferred to the woman in hopes of a healthy pregnancy without kidney disease. The testing is 99% accurate. The man or woman could have the disease.
There are many women who do not find out they have PKD until after they already have children. Stefanie feels strongly that she learned of her diagnosis at a young age so that she could do this testing. This type of decision takes dedication, as it does not happen overnight. This has been two years in the making for Stefanie and her husband. It has been a bumpy process for them, but they continue to remain positive. Out of all of the embryos they had fertilized (over 15), only 3 were unaffected. They transferred one embryo and got pregnant. Sadly, in June of this year they had a miscarriage at 10 weeks. They are currently two weeks away from their second transfer using their frozen embryos. They will know by Thanksgiving if they are pregnant.
I admire Stefanie’s devotion, persistence and commitment to her desire to have children who will not suffer from PKD. She said she has learned patience through this journey. It is hard for her to hear about all of her friends’ pregnancy announcements when she is trying so hard herself. But she continues to forge ahead with this well thought-out plan in hopes to stop this disease in its tracks.
One person’s decision in life does not mean that is the best path for each of us to follow. I do think hearing others’ experiences and choices helps to make us well-rounded in our thought process and knowledge base. Stefanie’s message to all of us is that if you know you have PKD or any other genetic disease, do your research and learn your options. When presented with a diagnosis such as PKD, it is easy to feel as though you have minimal control. Please remember that there are certain aspects in our life that we can control. I encourage all of us to focus on what we can control rather than what we can’t. Embrace the path we are on, whether it is one we were swept up on or one we chose.
Have you heard of PGD? Any information or first hand experiences you are willing to share would be greatly appreciated.
Sometimes witnessing a tiny gesture or a small action can change our perspective. Our spirits can be lifted by a stranger’s smile. Someone in passing can strike up a friendly conversation with us that brightens our day. Seeing an elderly couple holding hands or hearing a young child’s laughter can warm our hearts. Keeping our eyes open to the simple beauty that surrounds us can enrich our day. There are people we never meet but their stories touch us deeply and have a profound affect on our lives.
Since the passing of Anabel Stenzel on September 22, 2013, I have found myself thinking of her often. Ana had cystic fibrosis and received two double lung transplants. She authored a memoir with her twin sister that inspired a documentary film. Ana passed away from small bowel cancer – a common complication for middle-aged cystic fibrosis patients. Unfortunately, our paths did not cross but I heard of Ana and her twin sister Isabel quite often through their advocacy for organ donation. I encourage you to read the article below and be inspired by these extraordinary twins.
I extend my love and condolences to Isabel and the rest of Ana’s family. It pains me to know of all that Ana endured and for her to pass away at the young age of 41. When receiving a transplant, it comes with a lot of medicine, side effects, possible complications and the risk of not living a long life. I had to step back, change my perspective and remind myself of something important: If it were not for the gift of life, Ana, Isabel, myself and every other transplant recipient would not be given these extra years of living. Regardless of how few or how many they may be, it is a blessing. I am grateful for the extra years Ana was given and the beautiful legacy she has left for all of us to learn from.
In an article published by Transplant Recipients International Organization, it states, “Isabel noted her sister’s favorite quote from Hunter S. Thompson, saying it so accurately describes how she’d lived her life: “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming ‘Wow, what a ride’!”
This is exactly how I intend to live my life! I love the thought that the tiny actions we make – like a simple gesture – can brighten someone’s day, and how we live every day of our lives can have a profound effect on people we may never meet. The gift of life has had a prism effect on my positivity and my perspective on each extra day I continue to be given. My kidney transplant has enabled me to see life in a different light. I lead my life full of appreciation and with hopes that I will provide shade to many, long after I am gone…
“One of the noblest things a person can do is to plant a small tree that will someday give shade to people they will never know.”
What kind of legacy do you want to leave behind?
Last Thursday evening, I was filled with great excitement as I arrived at Sierra Donor Services, my local organ procurement organization, in Sacramento, CA. I was meeting transplant recipient friends, Natasha and Lori, so we could go together to visit our friend Danea, at UC Davis Hospital, who received a kidney transplant. On my drive to Sierra Donor Services, I reflected on a visit I had with Danea two weeks prior. We had a wonderful lunch and delightful conversations about life and her upcoming transplant. Before I left her home, I asked if she had any questions for me. Danea asked, “If there is one thing you wish you would have known before your transplant, what would it be?” The look in her eyes and the expression on her face when she asked me is a clear snapshot in my memory. I responded, “How wonderful life would be after my transplant.”
It is thanks to becoming an Ambassador for Sierra Donor Services that I was introduced to Natasha, Lori and Danea. Natasha had a liver transplant three years ago. Lori had a kidney transplant nine years ago and Danea had a kidney transplant 10 days ago.
On the car ride to UC Davis Hospital with Natasha and Lori, it became apparent the irreplaceable and unexplainable bond people share when enduring similar challenges in life. I have only been around Natasha a few times and Lori once and I felt more comfortable with them than some people I have known my whole life. It was non-stop chatter and laughter the entire evening. We talked and joked about side effects and things that have happened to us, from the medicine we take, how we are about germs and getting sick, and things that only we can fully understand and appreciate.
Our visit with Danea was priceless. She looked fantastic and is doing so well. Natasha, Lori and I reviewed her medicine list and compared it to what we take and shared many stories. The jokes, laughter and smiles continued. The room was filled with such infectious positive energy and the nurses were enjoying it so much that they were hanging out in Danea’s room with us. When I was getting my transplant, I did not have anyone around me that had received a transplant. I felt so blessed to be in Danea’s room as an 11-year kidney transplant survivor. The energy, joy, positivity and strength between the four of us that evening was invigorating.
We gave Danea a special ‘transplant survival basket’ that the three of us created. The basket was given to Natasha after her transplant and she graciously passed it on. We filled it with hand sanitizer, a blanket, socks, natural cold remedies, a journal, wishbone/kidney necklace, masks, lotion, nail polish, chapstick, sanitizer wipes, and pill cases. All items that we found useful after our transplants. We also created a special book for Danea titled, “Transplant Among Friends – Shared Inspirations for Surviving the Journey to Good Health.” It included a special message from each of us to Danea and her husband Phillip, who donated his kidney to Danea. It is filled with quotes and pictures that inspire all of us. We also shared what our transplants mean to us and allowed space at the end for their friends and family to write positive affirmations to them.
Four miracles enabled our paths to cross in life. The gift of life has a ripple effect of giving and has given me these amazing transplant recipient friends. That evening I was high on the gift of life and realized that people do need people. How good it felt to be in a room with young women that totally understand what being a transplant recipient is all about. I encourage you to share your story. Be open to meeting others going through the same challenges as you. Embrace the feeling that, “There is no normal. There’s just me.”
Congratulations on your kidney transplant Danea! We are overjoyed that you are doing so well. Thank you Phillip, Danea’s husband, for giving our friend a second chance to experience how wonderful life is with a kidney transplant.
Please be an organ donor. Please donate life!
How have other people helped you along your journey?
Pain can be all consuming. It can be debilitating. Pain can make us stronger. We can be afflicted by pain on a physical level due to an illness like PKD or an injury. We can be consumed with so much distress that a particular part of our body aches, like our heart. Mental or emotional suffering can cause us pain. Regardless of the circumstances, it is awful and tests us to our core.
“On a scale of one to ten, how would you rate your pain?” I have heard this question umpteen times when in the hospital and at doctor appointments. This seems to irritate me more times than not. I know it is important but sometimes you are in so much pain that rating the level of discomfort from one to ten doesn’t seem to do it justice.
Before doctors removed both of my kidneys, they were so huge they were pushing on my lungs and limiting my breathing. I was forced to take shallow breaths. If I would take a normal or deep breath, the pain was unbearable. I am thankful that both of my kidneys were removed which allowed my organs to get back into a happier place. That was 11 years ago. Until the beginning of this year, I have been fortunate to not experience that level of pain. However, I am now finding myself breathing shallow to protect my body from my back pain. Due to my adverse reaction to pain pills, I have not taken any since the end of July. The pain is constant and I feel as though it is starting to take a toll on me.
A few weeks ago, I decided to give acupuncture a shot. This week I had a rough treatment. My lower back is so inflamed and irritated, it is quite painful when the needles are inserted in my back. I was lying on my stomach with my head face down in the upside-down horseshoe-shaped pillow. The acupuncturist began by inserting needles in my ears, hands, feet and then my lower back. She put the needles at the locations that are most sensitive right now in my back. It was so painful that my body flinched with each inserted needle. When she was finished, I found myself in tears. Fortunately the pain diminishes once the needles are inserted.
As I lay there face down in the pillow with tears streaming down my face, I silently questioned why I was inflicting more pain on myself. I took many deep cleansing breaths and reminded myself that sometimes we need to deal with more pain to get to a point of obtaining a better quality of life again. I am hoping this natural course of action will be beneficial for me. I calmed myself down and tried to get to a happy place for the rest of my treatment.
I believe that is a struggle when dealing with pain – finding a happy place – whether that is mentally, physically or both. Everyone’s pain is different. A different magnitude, a different kind, and each affected on a different level. However, everyone’s pain is of the same importance and we should not think ours is less or more by comparing it to others.
“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.”
I continue to forge through my health obstacles and my pain, because on a scale of one to ten, my hope, strength and determination is off the charts.
Do you have any suggestions on how to deal with pain? How do you find your happy place in the midst of pain?
I believe it is normal for children and teenagers to be self-consumed. They are growing, learning and finding their way in life. When they come home from school, they tell their parents about their day. I don’t recall asking my parents about their day!
When I was younger I didn’t worry much about my parents. They were healthy and seemed invincible. I can tell I am aging as I now worry about my parents. I am concerned about their well-being and genuinely interested in learning as much as I can about their lives. I enjoy hearing stories of when they were younger, how they feel, their thoughts and aspirations. I want them to be happy. I wish I would have listened more and talked less as a youngster.
My mom has shared fond memories with me of when she was a child in Loganville, Pennsylvania. It is where her grandparents lived. I always enjoy going to Loganville with my mom, as I know it is special to her and is now special to us. We visit Brown’s Orchards for a delicious lunch and a stroll through the fun market. We then enjoy old fashioned ice cream at a hidden treasure, Carman’s Ice Cream shop. Every time we visit Loganville, my mom is sure to point out the exact house that her grandparents lived in. I feel closer to my family members whom I never met, when we are in Loganville.
On April 8, 2010, during one of our visits to Loganville, my mom and I made a spontaneous detour. We visited the cemetery where several of our family members who died from PKD are buried. It was chilling, emotional and inspiring to watch my mom walk around our family members’ tombstones. She told me who each person was and how I was related to him or her. It was a life-affirming day.
We know that PKD started with my mom’s grandfather, Kervin, who passed away at age 60. My mom’s grandparents had 10 children and my mom’s mom was one of the several children who inherited PKD. A lot of my mom’s aunts, uncles and cousins had PKD. We paid respect to them at their tombstones on that poignant spring day in Loganville, Pennsylvania.
My mom had one half-brother and one sister who passed away from PKD. PKD took Jack’s life at age 60, who was my mom’s half-brother. My mom’s sister, Donna, also died from PKD at 48. Donna lived in North Carolina and I only spent time with her for one week when I was 15 years old. She was in kidney failure and I remember her sitting on the floor of the spare bedroom in our home with curlers in her hair and medicine in plastic bags surrounding her. At that time I did not know she had made the decision to not go on dialysis and to let herself pass away. That was a treasured visit for me. I respect her decision but will never understand it. I wish she had fought.
My mom’s mom, Pauline aka “Mickey,” battled a lot because of PKD. She fought hard. She passed before I was born. I wish I had the opportunity to meet this warrior. I know she was amazing because she created my mom. My mom’s mom started to have issues in her mid 40’s and expired at age 53. She was on dialysis for eight years and the thought of a transplant scared her. Unfortunately, she never made it to that point. Her cysts kept growing and her abdomen became very enlarged. They removed both of her kidneys. Seven weeks following that intense bilateral nephrectomy, her bowels burst. They performed bowel surgery on her but were not successful. She passed away one month later. Her cause of death was she bled to death due to complications of PKD. Tragic.
My mom, Pam, is 57 and was diagnosed in her early 20’s. She has been on high blood pressure medicine since the age of 30. She has her original kidneys which are functioning well. Mom has not had any cyst bleeds and has only occasional pain. I am so thankful she is doing this well. My brother, Brandon, is 36 years old and has PKD. He has four children and knows that his oldest son, Branson, has PKD. I was diagnosed at age 10 and am the youngest in our family to endure such severe side effects from PKD and am the first in the family to receive a kidney transplant.
This is our family tree of PKD. On that moving day in April 2010 when mom and I stood side-by-side in front of the tombstones of our relatives, there were many unanswered questions. We wanted to know more. Why they passed away. Why so young. I was saddened yet felt very fortunate as I could reach out and feel my mom’s warm embrace. Hear her voice. See her beautiful smile. I am proof that we might not always follow the same family history as our loved ones. I encourage you to be inquisitive, ask questions and learn as much as you can about your family tree of PKD while you still have the opportunity to do so.
What does your family tree of PKD look like?
It is enlightening and quite powerful to learn things about yourself from the viewpoint and observations of others. Below is one of my favorite testimonials from my biography, “My Favorite American” by Dennis McCloskey. The published remarks were made by my friend, Sam Bashore, of Harrisburg, PA:
“Valen has an incredible ability to persevere through physical roadblocks in her life but I know she would much rather have spent a year in college than in the hospital! I see an incredibly strong young lady who refused to give up in her personal struggle. Her infectious smile covers a lot of her emotional scars. There was a time after her transplant when Valen was in the emergency room of the hospital with a high fever, which could be tantamount to a major illness for a person without a fully functioning immune system. I asked if she had called her parents and she said: ‘No, they must not know!’ She reminded me that her parents had been through enough with her PKD. For me it was a defining moment in her character: The child was making decisions for her parents! And that is where her inner strength comes from: her parents. Every quality you see in Valen exists within her parents.
“If you had never met Valen and talked to her without seeing her you would be hard pressed to determine if she was twenty-four or eighty-four. I say this because she has an above-average intellect mixed with a voice of directness developed from her traumatic experiences. She reminds one of a wise, older woman who can teach us many of life’s hard lessons, but then you realize you are talking to a young, and in many ways, innocent lady.
“I believe the reason she has affected so many people in her community is due to the way she has decided to live the rest of her life. I have watched her consume every little experience of life with passion and excitement! It’s as if she were blind her whole life, and now she can see!”
The first time I decided to handle my health challenges on my own was when my cysts started to bleed in college. I went to the school nurse to be examined. I called my nephrologist and kept my health issues from my parents. As things became worse, I went to Hershey Medical Center and did not tell my parents until after I had arrived and realized the prognosis was grim. To this day, I find myself handling things in the same manner. When the initial shock of a new health issue arises, I take action and do not reach out to my parents until I have answers and know what is wrong. I do not want to worry and stress them out until I have information to give them.
My desire is to be strong for my loved ones and handle things on my own. My intentions and heart are in the right place as I am trying to protect them. Being sick and dealing with health issues has been a big part of my life since the age of five. I am used to hospital visits and feel as though it is easier to go through it alone than put someone else through it with me. It is difficult for me to ask for help and even more difficult to accept the fact that I need it!
I have changed my tune a little since meeting Noah. He has taught me that instead of always being strong for my loved ones that we need to save some of that strength for ourselves. It is important to have an outlet or person to lean on; that it is healthy to be honest about our emotions and accept help. How it is ok to cry and find healthy ways to let those emotions out and then get your game face back on and start fighting again. Noah’s compassion, understanding and encouragement help me greatly with my health struggles. I have realized how nice it is to not always handle everything on my own. I am sure being a caregiver can feel helpless at times as they can’t physically fix us. However, emotional well-being is very important when dealing with chronic health issues and our caregivers can help us greatly with this. Our loved ones want to help us and I feel lucky to be surrounded by so much love.
I am a work-in-progress as I still find it a struggle to accept help and still have the urge to handle my health issues on my own, but Noah keeps me grounded and moving in the right direction. I know Noah and my parents hide some concern and I hide some pain, but I guess that is just true love.