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.
My father died in 1967 from complications of PKD…I was 17 at the time..I was diagnosed with in when I was 28….a few uncomfortable experiences but when I turned 50…it got me!..I was on dialysis for 2/1/2 yrs. when I received a cadaver kidney..transplant went great…I am 64 now and I had to have a liver transplant because of the size of my liver…function was fine but the 27lb. liver was causing other problems…new liver now and feeling great…just a note to say…it really does have a lot to do with your attitude…I know while I was on dialysis..my outlook on life was..Hey!…You do it to survive..make the most of it!..so you out there….keep going!!!!
Hi Vickie,
Thank you so much for sharing your story. 27 lb liver is amazing. Hard to fathom how large our kidneys and liver can get because of PKD. My kidneys were so large and the cysts would not stop bleeding and that is why they took mine out. They were working 60% but needed to be removed. Congratulations on a successful kidney and liver transplant. I commend your positive attitude and thank you for sharing your wonderful outlook on life with all of us.
I am turning 50 in 2 weeks from today. I have PKD from my father’s side of the family. He made it to 75 and was on a list for a transplant when a tumor on his liver started causing serious problems. He decided not to go through with chemo for that…. I’m wondering when I’ll start having problems with my kidneys. Luckily there is nothing serious going on right now for which I am SO grateful!!!
I read a lot of the stories posted and only hope the best for everyone. I can only hope diet and being very health conscious will slow the progression.
Thank you for posting your story 🙂
Hi Ann,
I am sorry that your father passed away. I am thankful to hear that you are doing so well as you approach your 50th birthday. Happy early birthday! I wish you all the best and continued good health. Stay positive and enjoy every healthy day. 🙂
You are my bright spot and silver lining! Sending good wishes and prayers your way!
Hi Dearest Debbie,
I adore your sweet soul. Thank you for brightening my day. Big hugs!
i wish everyone the best of their situation and valen what a story , you are so kind to share your life with all of us who need constant positive feedback to keep going when one is affected in some way with PKD..I JUST got my flyers and a few yard signs made so i hope that will get the word out for me to get a donor and how one can save lives.
Hi Dominique,
Thank you…your positive feedback in turn gives me inspiration. 🙂 I commend you for spreading awareness and sure hope you find your perfect match soon.
Valen. what a sweet fragrance you put into any story you tell! Thank you for being so honest and truthful in your journey with PKD. I always smile when I read your posts. You are one incredible little gal and I keep you and your Noah and your parents in my prayers. I too battle PKD and just had an appointment yesterday that lets me know I will be having surgery in the very near future that will hopefully bring me some relief from my discomfort. I am so happy to have found out about this site and to read your weekly journal. Thank you sooo very much and you my dear are a ‘silver lining’ to all who know you!! Blessings….xoxoxo <3
Hi Marsha,
So beautifully said…”sweet fragrance”…I like that. 🙂 Your heartfelt words touch me deeply. You encourage me to keep sharing and to keep writing. Thank you for your continued support and friendship. I hope your next surgery will provide you with the relief you deserve. xoxoxo
Dear Valen,
You write so beautifully and speak so authentically from your heart. What a gift you are to our universe. I thank you for all you do to make our world a brighter place to be.
(I’m sorry I dropped the ball in connecting with you earlier this year. I look forward to finding another time before year end. Until then,keep spreading your magical blessings and abundant joy. Your PKD buddy, Risa
Hi Risa,
Thank you so much for reaching out and for your beautiful comments. They mean so much. I hope to connect soon. Take good care my friend and I look forward to talking before year end. 🙂
Thanks to Valen & everyone who posted… I’ve really had a positive attitude about my pkd until the last few weeks. It feels like the weight of the world just came crashing down on me & i’m scared. Thank you for helping me remember that we all have ups & downs and that there is always something to be thankful for 🙂
Hi Christine,
I am sorry to hear that you are going through a challenging time right now. I have learned this year how important it is to let our raw emotions out and to not bottle them up inside. Then how important it is to put our game face back on and find a silver lining, a bright spot and know that the very moment we are in is a beautiful gift. As you take cleansing breaths of life today, please know that you are strong and that everything is going to be ok. I hope this blog will continue to be a positive outlet for you. Wishing you all the best.
Way to go for keeping a positive attitude! You’ve certainly had enough experiences in your life and to explore your coping skill options.
Hi Amy,
Thank you very much! I know keeping a positive attitude is a strong asset of yours as well. 🙂 Each health challenge continues to teach me more and more about life and how miraculous and mysterious our bodies are.
P.S. Thanks for sharing these beautiful pics!
Hi Amy,
You’re very welcome! I’m glad you enjoyed them. 🙂
Hi!
I am a 49 year old female who had PKD. Sept. 14, 2013 I was fortunate enough to have a bilateral nephrectomy and a kidney transplant. After a a little longer recovery then I expected, I feel amazing! My kidneys were each 6.5 pounds, I am 5 foot 5 and weigh 120. It is a relief to get rid of them and breathe easy!
People with PKD should live a normal healthy life and just check with a nephrologist yearly to check your kidney function. I was living my life without dialysis until the day of surgery, where my creatinine w as 8.2.
PKD people do have normal lives and can be saved when the time comes!
There are many wonderful people in the world!
How do you know when your kidneys are bothering you? What have been your symptoms? I know I’m sensitive to things but how do you just know besides the creatinine tests?
Hi Ann,
I had high blood pressure at age 10 and that is how I was diagnosed with PKD. My main issue was cyst bleeds. I would know I was experiencing a cyst bleed because I would get a fever, lower back pain and blood in my urine. I had both kidneys removed at 18 years old and a kidney transplant at 19. I am now 30. Blood work and regular checks ups with a nephrologist is a very good way to keep track of and document a history of your kidney function and other important components of your overall well-being of your health. Hope this helps.
That helps a lot ;-). My dad had high blood pressure. Mine is usually a little bit low. Maybe my pkd won’t progress so quickly. All of your comments are very reassuring! I’m amazed at the positivity expressed here and value your insights and knowledge.
Hi Ann,
They said I would follow the same family history as my mom’s side of the family, who I inherited PKD from. I wound up doing the complete opposite. I learned that all we can do is take the best care of ourselves, stay active in our care, learn as much as we can, ask lots of questions, see our doctor’s regularly, think positive, and it will all work out. 🙂 I am thankful that you read my blog and so glad that you enjoy it. I hope it provides you with Positivity … Knowledge … and Determination! 🙂
Hi Doreen,
Congratulations! I am thrilled to hear that your PKD kidneys were removed and you are feeling amazing with a new healthy kidney. Such a gift. Such a miracle. I am so glad you can breathe easier and I wish you all the best and nothing but joy as you embrace each new healthy day. Thank you for sharing your positive thoughts with all of us!