On Tuesday I walked proudly across the street toward the Firefighters’ Memorial in Capitol Park, adjacent to the State Capitol in Sacramento, California. I spotted the festive blue and white balloons and became filled with excitement for the event I was about to witness. I looked up at the beautiful, blue, California sky with the sun shining brilliantly through the soaring palm trees. I stopped, looked upwards, closed my eyes, and took a cleansing breath, filling my lungs with the refreshing morning air while the cool breeze swept across my face. I knew it was going to be a special day.
I continued to the news conference where Donate Life California was about to launch the Living Donation California Statewide Initiative. I waved excitedly as the first person I saw was Ann Lopez writer, actress, film producer, and kidney donor to ex-husband George Lopez. I was smiling ear-to-ear as we wrapped our arms around each other in a warm embrace. Ann and I share a special bond as we rode on the Donate Life Float together in the 2011 Rose Parade.
As the event began, I stood behind people seated in white chairs and listened to the amazing line-up of speakers, such as:
Bryan Stewart – Chairman of the Board of Advisors, Living Donation California.
Lisa Stocks – Board President, Donate Life California.
Dr. Jeffrey L. Veale – Transplant Surgeon, Ronald Reagan UCLA Medical Center.
Dr. Richard Pan – Health Committee Chairman, California State Assembly.
Ann Lopez –Writer/Producer/Actress, Living Kidney Donor.
Kelly Wright – Altruistic Kidney Donor.
JePahl White – Recipient in a Kidney Chain.
Tad Suwa – Sacramento Firefighter, Kidney Transplant Candidate.
It was emotional and compelling to hear the touching and personal stories and to learn of this amazing initiative. It is the first program of its kind: Living Donation California will serve as an information and referral service to encourage residents to be altruistic kidney donors to patients suffering from end-stage renal failure. It was one of those days where one is overwhelmed by how wonderful life is and how awesome it is to be alive. I was surrounded by spectacular human beings, from surgeons to firefighters; employees that work tirelessly for the cause; kidney donors; kidney recipients; and those on dialysis waiting for a kidney.
This initiative is vital and hits home for me because at 19 years old I was too sick to be put on the transplant waiting list. I needed a kidney to survive. In my time of dire need I required a living donor to stay alive. At one point during the news conference I was overwhelmed with gratefulness and reached over to my dear friend Tom Mone, CEO of OneLegacy, who was standing next to me. I wrapped my arm around him, looked up and we smiled at one another. My heart was overflowing with joy because it is a miracle that I am still alive today and able to witness such a monumental occasion. Following the news conference we all viewed the honest and powerful worldwide premier of a documentary called “The Chain” produced by Participant Media. It chronicles the stories of an altruistic kidney donor and the chain of kidney transplants started by her donation. Please visit www.livingdonationcalifornia.org to learn more and be inspired by this new initiative.
This was such a hopeful and miraculous day that it made me forget about my current health issues. It is amazing how powerful positive energy can be. This event was a beautiful reminder that there is hope. Hope for a healthier tomorrow. Hope for a brighter future. Hope for those of us with kidney disease. Hope that with initiatives like Living Donation California we will not be tethered to a dialysis machine. Hope that by the generosity of altruistic donors we can receive a second chance at life.
Let’s never lose hope.
The link below is KCRA-TV coverage of Tracy Bryan, Public Relations Director at Sierra Donor Services, and Ann Lopez, kidney donor to former husband George Lopez, discussing the launch of Living Donation California.
Three years ago today, Noah and I woke up in Colorado Springs, Colorado. Our Volkswagen station wagon was filled with the supplies we needed for our month-long cross-country journey and move from York, Pennsylvania to Auburn, California. It was day number five on the road. A new day. A new horizon of hope.
For two years, we planned, saved and did all we could to prepare ourselves for the biggest decision we had made thus far in our lives. We had spreadsheets that calculated all of our expenses and savings. A three-month deposit was placed on a townhome that was awaiting our arrival on June 1, 2010. Everything we owned outside of what was in the back seat of our car was placed in a POD (self-storage container) and shipped cross-country. Saying goodbye and pulling out of my parents’ driveway was heart wrenching. The snapshot in my mind of my mom, dad and their dog standing in the driveway as we pulled away will forever be embedded in my memory.
During our month-long adventure to our new home, it was hard to believe what we were doing, seeing and accomplishing. Noah and I were leaving behind our family, friends and everything we knew to follow our dream; our dream to travel, explore, and seek adventure and to not live in one place all of our lives. There were a lot of ‘what ifs.’ However, the way our trip went and how the last three years have unfolded, we know we are where we belong. We have learned what two people can accomplish with a lot of planning, hard work and love. Also, how amazing it is how one can embrace change when you set your mind, heart and soul on an aspiration. I am proud of this accomplishment, because I believe it shows how one can live a fulfilling life post transplant and with an incurable disease like PKD.
“You never know how strong you are until being strong is the only choice you have.” – Anonymous
Having something to look forward to, setting goals and achieving them have played a vital role in sustaining my positive attitude and outlook on life. Each new day is a beautiful gift that begins with a new horizon of hope. Playing a role in helping to find a treatment and cure for PKD has been a significant part of my life since I learned of the PKD Foundation in 2004. It has been a beautiful thing to watch the Foundation grow and achieve greatness as I myself have grown as a person.
Meeting PKD survivors and learning their amazing stories has given me strength and encouragement. Sharing our stories is such a powerful tool to help each other, to help raise awareness and help raise funds to support research. Our hard work has led to extraordinary results, such as the recent announcement by Otsuka Pharmaceutical Co. Ltd. that the U.S. Food and Drug Administration (FDA) accepted for “priority review” the company’s new drug application for the potential use of tolvaptan to treat ADPKD. If approved, this will become the first pharmaceutical therapy for patients with ADPKD. This is fantastic and extremely exciting news. Thank you to all of you who participated in the clinical trials and helped raise funds which gave the Foundation the opportunity to fund early pre-clinical animal testing of tolvaptan. Hopeful news like this fills my heart with joy as I can feel that we are getting closer to finding a treatment and or cure for PKD. What is remarkable is that we are all playing a part in helping to make this happen. We are changing the future, together.
From my cross-country journey from PA to CA to my journey of living with PKD, I have learned so much about life and myself. We can accomplish great things with the support of one another and when we join together. Following your dreams and achieving them takes hard work, but is attainable. You are only as big as the dream you dare to live. My dream is to live to see the day a treatment and or cure is found so that no one will have to suffer the full effects of PKD and endure the same trials and tribulations that ourselves and all of our families have. The PKD Foundation is making great progress, but needs our continued support and help to keep the momentum going.
My heart is telling me that with each new day, with each new horizon of hope, we are really getting closer to the day where we will fulfill our mission to ENDPKD. In addition to support, inspiration and hope, our mission requires financial resources. This is why several generous donors have offered to match donations made by individuals between May 1 and June 30 (up to $75,000). Please visit pkdcure.org/donate/double-my-gift for details and to make a contribution that will be doubled in value and will have an invaluable impact on all of us fighting PKD.
No matter what role we are playing in the fight to ENDPKD, we must stick together, NEVER LOSE HOPE and remember, PKD WILL NOT BEAT ME.
Yesterday I was asked, “How does it feel to be a spokesperson for so many causes where people look at you and the first thing they think of is your kidney issues?” The first thought that popped into my mind was that it makes me happy and proud that I have succeeded and accomplished my goal by having someone ask me that question. This means that I am helping to put a face to kidney disease and raise awareness so that hopefully when we say “PKD,” people will know what it stands for and, most importantly, there will be a cure one day! I had never been asked this question and have been pondering it since yesterday.
A young woman around my age who also has PKD asked me the question. Her kidneys are in perfect health and she said she went through a time of being very angry that she has PKD and pretending that she does not have the disease; a phase of denial, I guess. She said she still has a love-hate relationship with PKD where some days she is compelled to want to help and other days she does not want to think about it. When I think back, I never went through this. I was diagnosed at 10 years old and was in and out of the hospital due to cyst bleeds and complications throughout middle school and high school, and I don’t recall ever being angry. I accepted the fact that I had this disease. My first thought was that I did not have time to feel anger because at 18 years old, when I was in the hospital for so many months, my main focus was living to see the next day. Never angry about why I was there! But realistically speaking, I have had plenty of years since then to be angry because of PKD. I can’t help but wonder if it is strange that I never went through a bitter phase. Or does that solidify a feeling that I have been put on this earth and am still alive today to use my life experiences as a tool to help others?
As we wrap up Donate Life Month, I sure have enjoyed seeing the camaraderie, with all of us touched by organ donation and how everyone has been sharing the miracle of transplantation so beautifully. I kicked the month off by honoring Sally, my kidney donor, and sharing why she felt compelled to give me the gift of life by way of a kidney transplant. Then during week two, I expressed how amazing I felt when I awoke from my kidney transplant and how others have the power to donate life and give others a second chance like I have been so fortunate to have been given. The next week I reminisced on last year’s Donate Life Month and wrote about the interview I had with the Auburn Journal. I am proud to say that article was published on the front page of the Auburn Journal on April 18, 2013. The writer, Andrew Westrope, did a tremendous job. Please read the wonderful article at: http://www.auburnjournal.com/article/kidney-transplant-helps-auburn-resident-find-new-purpose.
This week, I wanted to wrap up the month and share some fun Donate Life spirit! First off, thank you to those who participated in my Blue & Green contest and posted your pictures on Facebook. Trina Brooks Layne received the most “likes” and won an autographed copy of my biography. For April 19th, National Donate Life Blue & Green Day, I sported a cheery blue and green outfit, with a scarf handmade by my mom. I love baking and I made festive blue & green cupcakes and displayed them in the fun swirl shape that is used in the Donate Life logo. My parents live in PA and my mom surprised me on Donate Life Blue & Green Day with some awesome photos that celebrated the day. My mom and my parents’ sweet dog, Zsa Zsa and Princess Kitty showed their spirit for this vital cause by “wearing the colors.”
Thanks to the miracle of transplantation, I am grateful to be 30 years old, for not everyone has the opportunity to see 30. When you are given a second chance, it makes aging all that more beautiful. Looking back on Donate Life Month, I am proud to be a Donate Life Ambassador, a kidney recipient and part of such a full-of-life and passionate group of kindred spirits who really seize every day. When I was 19, I was fighting for my life and in desperate need of a transplant to survive. I was only known as the super sick young woman in the hospital who might not make it. So when thinking of the question I was asked yesterday for the first time, “How does it feel to be a spokesperson for so many causes where people look at you and the first thing they think of is your kidney issues?” My answer is … It feels wonderful to be alive!!!
I hope all of you have enjoyed the posts this month in honor of Donate Life Month! I am curious to know if any of you have gone through a denial and/or angry phase when dealing with being diagnosed with PKD. If so, how have you dealt with it and do you have any advice on how others can cope with being upset about living with PKD?
I put the finishing touches on my festive Donate Life outfit as I put on my big blue and green earrings in preparation for an interview with the Auburn Journal. I was wearing a frilly green tank top, blue scarf, white jeans and green and blue platforms. Although I was not feeling my normal spunky self because of my herniated disks, it felt good to do my hair, put make-up on and be wearing this bright and cheery outfit. This clothing and these colors brought back wonderful memories from April 2012.
As I looked in the mirror, I began to reminisce about last year’s Donate Life Month as it was filled with amazing opportunities and priceless memories. I was named one of the “12 Inspiring Women” for Donate Life’s “20 Million in 2012” campaign. I had the honor of attending a photo shoot that was hosted by famous kidney donor Ann Lopez in Beverly Hills, CA. Throughout this event I met many famous people as we were all there raising awareness for a vital cause: organ donation. I had the privilege of working with Tracy Bryan, Director of Public Relations at Sierra Donor Services. Tracy and I were on TV and radio shows sharing my story and the importance to Donate Life. I also had the pleasure of sharing my story at the DMV in Truckee, CA during an event honoring their office for having the highest donor registration rates in California. These wonderful memories put a smile on my face as I walked down the stairs of my home.
I opened the blinds and our front windows and felt the warmth of the California sun and the fresh air. I was enjoying the simple pleasures in life, which make me thankful to be alive. It was not long before I saw two men walking down our driveway, one carrying a camera and the other a notepad. It was a writer and photographer for the Auburn Journal, which is publishing a photo and story about me in this week’s paper about my connection with organ donation and National Donate Life Blue & Green Day. The photographer took a few photos and then I sat down and chatted with the writer for an hou
It is difficult when I have a limited amount of time with a writer to try and tell him all that I have endured in my 30 years. I felt as though I was overwhelming him with information but he said he would rather have more information than less. I told him about my PKD and what led to the ultimate demise of my kidneys and why I needed a transplant and how the transplant restored me back to health and was what I needed to live. I told him how I would not be sitting at my kitchen table with him that day if it were not for the selfless gift that my donor, Sally, gave me. I explained how wonderful Sierra Donor Services is (my local organ procurement organization) and how gratifying it has been to volunteer for them. When I do interviews like this I sometimes feel like I am talking about someone else because it is hard for me to fathom how my body could handle all that it has and how well I am doing today. I told him of my current challenges with my herniated disks but it has not taken away my smile or my spirit and how this too shall pass. When I was telling my story I enjoyed seeing his expressions of surprise and amazement for all that has happened thus far in my life. I don’t stop and think about it on a daily basis as it is all in the past, so at times like this when I talk about it, I find myself amazed as well.
Sharing my story and volunteering for all of the various organizations that I am involved with has been a wonderful outlet for me. Combine this and my love for the outdoors, and that is my therapy. When Andrew from the Auburn Journal left, I had a wonderful feeling of empowerment as I have turned my triumph over adversity into something positive. I hope those who read his article and this post will be inspired to live even more positively, to reach out and volunteer, to wear blue and green with me on April 19th to support organ donation and to say “yes” when asked to be an organ donor.
As mentioned in last week’s blog, tomorrow April 19th is Donate Life’s National Blue and Green Day. This is a day when you are encouraged to wear Donate Life’s colors of blue and green to show your support for organ donation. I would love if you would all join me in this fun initiative. It would be great to put a face to the names of those of you who have left comments on my blog and who read my blog. I am inviting you to friend me on Facebook, Valen Cover Keefer, and on April 19th post a picture of yourself wearing blue and green in support of organ donation. You can write something like, “I am wearing blue and green in support of organ donation for Valen’s Virtual Blue & Green Fashion Show. PKD Will Not Beat Me!” I will mail an autographed copy of my biography to the person whose picture receives the most “likes” on my Facebook page on April 19th.
My big brown eyes popped wide open and I had never felt more alive in my entire life! I have lost track of the number of surgeries I have had, however I know I have always been quite groggy when I awake from anesthesia. But I vividly remember waking up from my transplant surgery on August 13, 2002. I recall my eyes suddenly opening with excitement, I had my full-of-life smile back and I vividly remember all my family members standing around my bed looking at me with smiles full of joy. The first words out of my mouth were, “I want to go for a walk!” I remember everyone giggling and telling me I needed to relax. In my head, I thought, “I’m alive! I’m alive! I feel GREAT!!!” I had been sick for so long that I forgot what it felt like to feel good. I was in awe at how Sally’s kidney instantly gave me energy, hope and the spark of life. An unforgettable feeling!
When people hear that I had a kidney transplant they say, “Oh, that is great. So now you are good to go?” Unfortunately, transplanted kidneys do not last forever. My body is constantly fighting the “foreign” object and that is why I am on immunosuppressant drugs. These medicines suppress my immune system so that my body will not reject the kidney. Since I was transplanted so young, at 19, the odds of me needing another transplant some day are pretty high. I have had my transplant for more than ten and a half years, and “she” is doing great, with a creatinine of 1.09. I take immense pride in taking the best care of myself. I respect this second chance I have been given and am a very diligent transplant patient. I see my neprhologist every four months and ask tons of questions in order to become as educated as possible. I get monthly blood work done and review all of my labs to assure my numbers are in the normal and healthy range. I take my blood pressure regularly to check that my body is not working harder than it has to and is not putting any extra stress on my kidney. I am extremely organized with my medicines and take more than 20 daily pills on time, every day. It frustrates me to no end when I hear patients that do not take care of the gift that they have been given. I consider myself privileged and honored to no longer be on dialysis, thanks to the transplant. Dialysis and transplantation are the only options for those of us with PKD. The life of a kidney is just like our own lives; there are no guarantees. However, if I do all that I can as a patient to care for it, then I know I am playing my part in helping it to last as long as possible and the rest is a little bit of luck, hope and faith.
Technically we have all been given the gift of life. Every morning that our eyes pop open, we should all be thankful and ready to make the most of every day. For those of us who have received transplants, we have been afforded a second chance at life. Sally gave me a gift that I never saw, never touched, and yet has forever changed my life. I believe all trials in our lives prepare us for what we will become. Taylor’s Gift Foundation, a non-profit with a mission to Regift Life, Renew Health and Restore Families, has a powerful saying of “Outlive Yourself” which really speaks to me. By being an organ donor, we have the opportunity to outlive ourselves. I think it is amazing to know that my heart can be beating in someone else after I pass away. I want my positive energy to live on not only through my story, but also through my organs and that is why I am an organ donor. In honor of Donate Life Month, I want to thank all of you who have registered to be an organ donor. For those of you who have not, I hope by learning of how life-changing Sally’s “gift” was to me that you would consider signing up to be an organ donor. You have the power to give someone else a second chance at life like I have been so fortunate to have been given. Let’s join together and Donate Life!
“When you make loving others the story of your life, there is never a final chapter, because the legacy continues. You lend your light to one person, and he or she shines it on another and another and another.”
April 19th is Donate Life’s National Blue and Green Day. This is a day where you are encouraged to wear Donate Life’s colors of blue and green to show your support for organ donation. I would love if you would all join me in this fun initiative. It would be great to put a face to the names of those of you that have left comments on my blog and who read my blog. I am inviting you to friend me on Facebook, Valen Cover Keefer and on April 19th post a picture of yourself wearing blue and green in support of organ donation. You can write something like, “I am wearing blue and green in support of organ donation for Valen’s Virtual Blue & Green Fashion Show. PKD Will Not Beat Me!” I will mail an autographed copy of my biography to the person whose picture receives the most “likes.”
My transplant surgeon, Dr. Robert Montgomery, described me as someone who was depersonalized by my illness. I was fortunate to learn priceless thoughts and information from my transplant surgeon when the author of my biography, Dennis McCloskey, interviewed Dr. Montgomery for my biography in 2007. I was present in the room as the world-renowned surgeon addressed his comments to me:
“You had lost most of your hair, and you had a moon face as a result of a lot of excess fluid,” Dr. Montgomery explained. “You were featureless, and I know why: you were just so tired of people hurting you, poking and prodding you, and sticking needles in you. Whenever someone came near, you reacted and regressed. You were one of the youngest PKD patients I had ever seen and you were as sick as anyone I had ever seen with kidney trouble.” He continued, “You did not respond or engage, but there was something from within you, something shining that is still present as I look at you now; some light that I picked up on. The light was there, but everything else had been stripped away by illness. I am a very involved surgeon, but I was drawn into that drama and I got very much more involved in your case. In the end, we transplanted you in a condition that I normally wouldn’t.”
To this day, it still amazes me to read this as these words came from the Associate Professor of Surgery, Director of Incompatible Kidney Transplant Program, Chief of the Division of Transplantation, and Director of the Comprehensive Transplant Center at the Johns Hopkins University and Hospital.
As I write this today, more than 10 years after receiving the gift of life, I am full of emotion and in awe at how my kidney transplant not only saved my life but it transformed that girl once depersonalized by her illness into the strong healthy woman I am today. I was too sick to be put on the transplant waiting list but needed a kidney to survive. I was so ill that I don’t remember all the details but I know that several generous individuals stepped forward and offered to donate their kidney. Some were people from my dad’s work; one was a friend from high school; and another was a high school friend’s mother. In my time of dire need, the kidneys of both the friend and the friend’s mother were ideal matches.
My donor’s name is Sally Robertson. I know everyone’s donor is an angel, but Sally is truly angelic. She is a woman of strong faith, of tall stature, quiet beauty, and has the most calming voice I have ever heard. Sally is gorgeous with the sweetest soul. She has the prettiest hair, kindest eyes, a heart of gold, and a smile that melts my heart. I have known her since I was in 8th grade when I became friends with her daughter, Emily. It is amazing to think my second chance at life was right before me for so many years. I am very thankful to have a living donor who I can stay in touch with. Sally lives in Pennsylvania and I live in California. Tears fill my eyes as I think of what I miss the most: her hugs. She gives the best hugs and would always whisper words of love and encouragement as she held me tight. I always wondered why would a married woman, with a full-time job, and five children, choose to donate her kidney with no hesitation.
I was fortunate to learn the answer when the author of my biography, Dennis, interviewed Sally in September 2007. Sally’s family is important to her and so is her Christianity. Sally said, “I am a Christian and that sums up who and what I am. He (God) is the reason I gave my kidney to Valen. I knew she was a very sick young woman and if there was anything I could do to help her, I would. Jesus is my savior. Without him I am nothing. He has given me hope and peace beyond any understanding, and forgiveness like I don’t deserve. He loves me unconditionally, in spite of myself. I wanted Valen to have a kidney and for her to know unconditional love and have her know the Lord loves her so much.”
During this once in a lifetime interview, Sally looked at me and said, “He never left you, Valen. We live in a broken world, in a world where bad things happen and we have terrible illnesses and diseases and people are dying and people are hurting and they may not fully understand it; but God never leaves us. He never forsakes us. He is always there and He wants us to turn to Him. I was just the instrument for God to love Valen and give her a hope and future. There was never a condition for this kidney, Valen. This was a gift to you. You did not have to do or say anything to earn it, because we cannot earn God’s love. It’s a totally free gift.”
To this day, her words full of love, faith and grace overwhelm me. My heart feels tight and tears stream down my face and it is hard to find the words to share my tremendous appreciation to be alive today. To be so lucky to be shown His unconditional love from Sally, to feel Sally’s unconditional love, my parents’ and Noah’s unconditional love. I wipe the tears from my cheeks and off my keyboard as I pray for those of you out there waiting for a transplant who I hope will be as fortunate as me and be given a second chance at life.
In honor of Donate Life Month I want to honor and thank Sally. I want to thank every organ donor out there. I want to thank all of you who have signed up to be organ donors. I want Sally to know that I live every day to make her proud of the decision that she made to give me her kidney. I hope that how I live my life shows everyone the miracle of transplantation. It is important to me to show donors how grateful recipients are and that their ‘gift’ is life-changing. Sally, thank you for giving me the opportunity to teach, to love and to live the beautiful life you have so graciously given me. It is an honor to carry a piece of you with me every day.
Life is a constant balancing act as we walk on our individual tightropes. Some days are smooth sailing and we glide across with such grace. Other days we find ourselves swaying back and forth as we continue to put one foot in front of the other. Then there are days we find ourselves hanging on by a thin thread. I find there are times–as I gain more knowledge of my health–that there is a fine line between feeling overwhelmed and feeling empowered.
I had my four-month check-up with my nephrologist last week. As always, I left as a more knowledgeable transplant recipient than when I entered my doctor’s office. We discussed my ongoing back issues and the health of my kidney. I am thankful that my kidney is doing well. However, due to the cortisone shot that I had in my back, I am experiencing persistent high blood pressure. Just like when we are prescribed medications it seems that when we try to fix one problem, another occurs. For instance, I take two kinds of blood pressure meds. The first is metoprolol, which is very safe for transplant patients. However, I have to take a low dose because the normal dosage causes my pulse rate to drop significantly. So, the doctor has me on a second kind of blood pressure med called norvasc. But norvasc causes swelling which in turn raises my blood pressure, so I also have to take a water pill. Seems crazy, right? We reviewed my current dosages and came up with a plan to keep my blood pressure at a safe level while my body is processing the high dose of cortisone it received for my back. I need to monitor my blood pressure twice a day and was given instructions on what meds to take depending on what the numbers are. During the course of the hour that I spent with my doctor we discussed so many other issues and topics that he had a list typed out for me. We added fish oil and vitamin D to my daily supplement list. When Dr. Bhat walked me to the check-out desk to schedule my next appointment, he stood there and reviewed the long list of items we had discussed during the course of the appointment and the changes that need to be made in my daily regimen. With a smile on my face, I replied, “It’s as easy as that, right?” I had to try and keep things light for I was just infused with a lot of information. I couldn’t help but wonder how other patients feel after receiving such a lengthy amount of information about their health.
On my drive home I had to stop at the pharmacy to fill some new scripts. I was trying to absorb everything when suddenly I noticed a billboard with an all- white background that read, “Believe” in large, bold, blue print. This stopped my train of thought and I took a deep breath and relaxed a little. I walked into the pharmacy and as I stood at the counter and handed in my new scripts, the song, “Beautiful Day,” by U2 started playing. This was the theme song on the Donate Life Float when I was a float rider in the 2011 Rose Parade. This brought a smile to my face and my worries seemed to subside. I believe in signs and think it is important to not miss them along the way. These two signs helped to give me balance and feel less overwhelmed and more empowered.
When I am dealing with health issues above and beyond the staple ones, like my kidney transplant, a feeling of being organized keeps me sane. I keep a daily record of my back problems in a separate, paper notebook. I keep a daily log of how I am feeling and any changes in my health. I record my daily blood pressure readings and the additional blood pressure meds I take based on my blood pressure numbers. I also track the date and times that I take medications that are different than my normal meds such as my pain meds, muscle relaxers, etc. I have file folders for all of my paperwork related to doctor visits, hospital stays and new medicine information. By writing everything down and being so organized, I feel less overwhelmed and feel that I have the best handle on what I am going through and am being my own best advocate. When I see my doctors, I take this daily log with me and can answer any of their questions and it enables us to go back and review the information to measure my progress. When I have everything down on paper I feel empowered.
I try and put myself in the shoes of people who have been recently diagnosed with PKD–the ones that dialysis is in their near future; I think of others who find out they are about to be placed on the transplant waiting list, those who are waiting for ‘the call’ to receive the gift of life, or the caregivers who are the biggest cheerleaders and support system for those of us with PKD. We are constantly inundated with so much information. Sometimes we are so concerned and scared that it is hard to absorb everything. As I continue to walk on life’s tightrope, I learn more lessons that help to keep me standing tall. I’ve had days where I feel as though I can’t wipe the smile off my face and I am doing cartwheels across the tightrope and flying so high that my feet are barely touching the rope. Other days are more emotional and I find myself with both arms reaching out in need of hands to hold for support. Regardless of what the new day brings, I continue to put one foot in front of the other, for every new day is a beautiful day.
* * *
What helps you with that fine line between feeling overwhelmed and feeling empowered when you gain more knowledge of your health?
“Did you ever know that you’re my hero,
and everything I would like to be?”…
-from song recorded by Bette Midler
The first memory I have of my mom is her sitting at the kitchen table. I was five years old and I walked into the kitchen and said, “Mommy, my head hurts.” I repeated it several times, each time louder and louder until I fell to the ground and had my first grand mal seizure. When I came to from the seizure the first thing I saw was my mother’s frantic and worried face. It breaks my heart when I think of how many times my health issues have led to that worried-sick look on my beautiful mom’s face.
I admire my mom for surviving the childhood she endured. She did not have a father figure, as he left when she was born. When she was in 3rd to 6th Grade she lived alone in a home with her two siblings during the week and spent the weekends with her mom and her boyfriend. I can’t fathom her being so young and fending for herself during the week. I believe her independent and indefinable personality is due to how she was raised.
When I compare my upbringing–full of support and love–to my mom’s, I feel so blessed and sad to know what my mom had to experience. Even though my mom was not shown unconditional love, she sure knows what that means and how to be an amazing mom. I guess that is something that just happens and is natural for some. My mom gave up everything in life to make sure that I was happy and healthy throughout all of my health challenges. My dad allowed her to stop working when I was young so she could take care of me with my health issues, which started with seizures, then scoliosis back surgery and PKD.
“…I can fly higher than an eagle,
’cause you are the wind beneath my wings.”…
I inherited PKD from my mom. As previously mentioned in an earlier post, her doctor suggested that she get an abortion because of the chance of her passing PKD on to her child. I am so proud of her for staying strong and for bringing me into this world. I have never been bitter or upset for one second that I inherited PKD from my mom. For she inherited it from her mom and it keeps going back in our family history. I am grateful she brought me into this world, for she is my hero.
My mom watched her cousins die from PKD; her mother died at 53 when mom was in her early 20’s; her sister refused dialysis and transplantation and passed away from PKD; and her brother died while on dialysis. She has seen me suffer greatly from this hereditary disease. My mom also passed this disease on to my brother and his 11-year-old son also has PKD. My mother has her original PKD kidneys; her function is doing well and she is the oldest to survive in our family. She is the strongest person I know. Her eyes have seen so much pain and devastation from this disease. I believe she is our rock and here to help us all get through PKD. I hope with all of my heart that she will never have to endure the full effects of PKD. I know that sometimes watching others go through illness is harder than living it. I am in awe by mom’s quiet inner strength.
I smile when I reflect on the fun little memories of my mom. Like how she would make me scrambled eggs with ketchup when I was sick. She would make cinnamon and sugar toast, cut off the crust and slice the toast diagonally. She would make egg sandwiches with the crust removed and cut into four squares. I loved the notes she would write on napkins and put in my packed lunch. She can draw really well, and when I would have field trips at school, she would draw the best pictures on the outside of my brown lunch bag. She was so patient and let me have almost any pet I wanted and took care of all of them. She would stand up for me like no other person. I pity the person that would not be nice to me at school because they would be getting a visit from my mom! She devoted her entire life to caring for me, loving me, helping me, and making sure I enjoyed every healthy day. She sat with me in the bathroom when my belly hurt and would do anything to make me feel better. She held my hand, rubbed my back and gave me the strength to get through the toughest days. I learned so much from my mom. The most important thing I learned is what it feels like to be unconditionally loved.
“…It might have appeared to go unnoticed,
but I’ve got it all here in my heart.
I want you to know I know the truth, of course I know it.
I would be nothing without you.”…
I have not been blessed with the best of health, but I have been blessed with the best parents. Not everyone is fortunate to say that and I wouldn’t trade it for the world. I want my mom to know what a remarkable, beautiful and amazing woman she is. That I continue to learn from her strength and unconditional love and love her more than words could ever express. I live every day to make her proud, proud of the decision to bring me into the world and for her to know how much she means to me. Thank you mom for all that you have and continue to do to make this life of mine wonderful. You are my hero and I want the world to know what a special woman you are. You are a PKD hero that we can all learn from. Thank you for loving me. Thank you for showing me what unconditional love is. Even though we are 3,000 miles apart, I hope you can close your eyes and feel my unconditional love for you as I wrap my arms around you and sing…
“Fly, fly, fly high against the sky,
so high I almost touch the sky.
Thank you, thank you,
thank God for you, the wind beneath my wings.”
Who did you inherit PKD from and how has it affected your other relatives? Did it skip a generation?
When you think of PKD, what do you picture in your mind? Is it the image with a normal-sized kidney in comparison to the football-sized PKD kidney polluted with cysts? Is it the unknown of what your future may hold for you while living with this disease? Or is it the concern for your family members who are affected with PKD? How about the relatives you have lost? Do you think of the hopeful day when a treatment and cure is found?
In honor of World Kidney Day and National Kidney Month, I would love if you would join me in an exciting social media campaign that I am working on with University Kidney Research Organization (UKRO). I am a national spokesperson for UKRO whose mission is fundraising to support medical research and education related to the causes, treatment, and eradication of all forms of kidney disease. On September 19, 2012, USC Keck School of Medicine and UKRO announced the establishment of the USC/UKRO Kidney Research Center (KRC). The Center aspires to be a premier center nationally for kidney research.
The initiative that me and UKRO are working on today and throughout the entire National Kidney Month is to put a face to kidney disease. We are living with one of the most common life threatening genetic diseases and when I say “PKD” to people, so many of them do not know what it means. I believe together we will change this. I have been delighted to see how many of you are speaking out and sharing your story through this blog. We all know someone fighting PKD and waiting for a transplant, a research breakthrough, and a much-needed cure. It is hard for me to wrap my mind around the figure of millions people worldwide who suffer from polycystic kidney disease. When I look at pictures of my grandmother who passed away at the age of 53 before I was born, my aunt who died when I was 15, my mom who is 56 and doing well with her original kidneys, my 36-year-old brother who is healthy with his original kidneys, and my dear 11-year-old nephew who has PKD, then it really hits home. Also, when I see other families battling this disease, I am given a personal connection that really pulls on the heartstrings. This is real and together we need to fight for our cause.
It would mean so much to me if you would join me in sharing pictures of yourself and your loved ones who are living with PKD by being a part of our special ‘Faces of Kidney Disease Image Wall,’ showing the diverse group of people fighting PKD. For details on how to take part in this simple yet powerful event, and to learn more of the other initiatives with this campaign, please visit: http://ukrocharity.org/events/on-world-kidney-day-2013-put-a-face-to-kidney-disease/
My goal has always been to share my triumph over adversity and put a positive face on PKD. I want people to not only see the ugly picture of what our PKD kidneys look like, but to see our beautiful faces who are living with those kidneys inside us. It allows others to make the connection of all of us who live with PKD and how we are the ones that need their support to find a treatment and cure.
When I think of PKD, what do I picture in my mind? I picture the millions of people worldwide that need support. I picture the departed loved ones that I have never met because of this disease. I think of my nephew and future generations who I hope will never have to endure the full effects of PKD. I picture hope, positivity, a treatment and a cure found. I hope you will join me in embracing PKD and be proud to share your photos to help make our ‘Faces of Kidney Disease Image Wall’ a powerful tool to help in the fight to end PKD.
Happy World Kidney Day my PKD family! I hope you are joining me today for PKD Challenge Day #14 and wearing a PKD t-shirt!
“By a show of hands, how many people know what PKD (polycystic kidney disease) is?” This is how I begin most of my speeches. I have asked that question at over 80 events. I continue to be amazed as I scan the room and so few hands are raised. This shows me how vital PKD awareness is and why I am excited to participate in the ‘31 Days of PKD Challenges.’
The 31 challenges that the PKD Foundation have created are educational, fun, and an easy yet powerful way for all of us to join together, so when someone hears PKD, they will know what it stands for. I am always up for a challenge and I am excited and proud to say that I am participating in this wonderful initiative and hope you will join me.
Today is the 7th day of this awesome initiative in celebration of National Kidney Month and my heart is overflowing with joy as I am seeing so much PKD and organ donation promotion in my newsfeed on Facebook and Twitter. This is so inspiring to me and I want to thank all of you for helping to make this such a great success. For those of you that are just learning of this great event, I sure hope you will join us in spreading our PKD love and awareness. On this 7th day of the ’31 Days of PKD Challenges,’ the challenge is this: “One organ donor can save up to eight lives. Go to donatelife.net and become an organ donor today!” This one is especially near and dear to my heart as I am alive today and able to share this blog with all of you thanks to the miracle of transplantation. Please consider giving someone else a second chance at life like I have been so lucky to have been given, by signing up to be an organ donor today!
At the end of my speeches, I again ask, “By a show of hands, how many people know what PKD (polycystic kidney disease) is?” Now when I scan the room, every single hand is raised. This exemplifies the power and impact one person can make on someone else’s life. This is what each and every one of us is doing by participating in the ’31 Days of PKD Challenges.’ By participating in these daily challenges we are helping others become a little more aware of this life threatening disease and it gratifies me to know that more people are becoming aware of PKD and gives me hope that we will one day live to see the day a treatment and cure is found. With us joining together and doing this as a team, I hope it will give all of you comfort to know that we have succeeded and have grown these challenges into opportunity and success.
So, who is up for the challenge and will be joining me in honor of National Kidney Month for the ’31 Days of PKD Challenges?’ Please let me know what awareness means to you.