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 found out I had PKD at the age of 21. I can say I never had an angry or disappointment towards PKD at any time. My father had PKD and started dialysis when I was 16. He did Home Hemo when a full size machine was provided. I remember the leg cramps my dad had and the pain he was in! My goal in life was to never have to do dialysis. This was my fear was not PKD but the quality of life I would have later in life. My sister was the first one to need a transplant. She was very fortunate to find a donor before she ever had to start dialysis. I vowed to follow in her footsteps! I went on the transplant list in August 2011, I had a donor that matched but never made it to test. This was a little sad, but as luck would have it a friend from high school contacted via Facebook. They tested to be a match but was not approved! This proved to be a little hard to accept but life goes on. So keeping my eyes wide open I got on another list closer to home. Then I had 2 donors step forward to be tested. I sent one to each location about the same time. Both were a match, one a little better than the other. Mayo called me and told me that we were ready to go except for a nodule on my lung that had not changed in 6 months. I went from Texas to MN. Had the nodule removed and tested. The results were good so I was cleared for Transplant . All I needed was about a month to recover. One week after I got back home I set up a meeting with my donor to tell them the good news, but the news was not good. They had changed their mind. I still had a back up plan so this was hard to take but bearable. My other donor needed a mammogram before they would clear her. The results were good and we scheduled the transplant for 3-26-2013. It was a roller coaster ride that did not avoid the one fear I had. I had my fistula done in March 2012 and started dialysis in October 2012. I was thankful to have the strongest woman in the world by my side. She trained to be my nurse and we did Home Hemo. I could never thank my wife for all she has done for me. Or my stepson for being my inspiration, but that is another story all on its own. I have many people to thank for my life, knowing I will be around to one day see my grandchildren that have not been born yet. I will spend my life thanking these people and living life to the fullest! Valen thank you for being one of those inspirations.
Hi James,
Thank you for sharing your story with all of us. I can feel your positive spirit, gratefulness and appreciation for life in your written words and that is a beautiful thing. I am so happy that you have a wonderful support system with your wife, family, and friends. I am fortunate to have that too and share your same sentiments of spending my life thanking these people and living life to the fullest. I am thrilled that you received a transplant and am so happy that your sister has too. She is such a sweetheart. I just love her and now you too! 🙂 Thank you for following my blog and sharing your personal story with all of us. I wish you all the best James with your new miraculous gift of life. Sending lots of love your way and my kidney is giving yours a high five for doing so well. xo
Good for you guys for not taking each day of life for granted and inspiring others to have a good attitude to make it easier to cope with their health crisis. I’ve not had any pain from my PKD (just slightly elevated blood pressure), so it makes it easy not angry for having PKD. But as for my caregiving role to my husband with ESRD-I went through a few months of being mad and being in a bad mood sometimes. There was noone to be mad at, so I just had to get over it and move on. The only thing that makes me in a bad mood these days is lack of sleep! Because of this, I only have 1 cup of coffee in the morning, but struggle with my chocolate cravings. We have learned that caffeine causes the cysts to multiply and grow…
Hi Amy,
I am grateful to hear that you have not had any pain and just slightly elevated blood pressure, that is awesome! I am sorry that in addition to you dealing with your own kidney disease, that your husband has ESRD. I commend you for being strong and overcoming being mad. I hope you continue to do so well with your PKD!
I’ve had a lot of different emotions. I am 28 years old, diagnosed when I was 19. At first, I did everything as “normal”. I ran, shopped, danced. My mom, who also had PKD, died when I was 14 with an aneurysm in her brain. I think that’s where it started. I went through a sort of denial for a while. It was almost as if I almost gave myself a deadline of my life. My mom was 42 and I just knew that I was going to die young too. So I pretended I was “normal”. Now, for the past 3-4 years, my life has changed. I am not able to run, shop, dance. My kidney function is fine…at 0.8. My only problem is that my kidneys swell. Of course they’re larger than normal, more than double “normal” kidneys. I can’t go bowling with my 9th grade girl youth group. I can’t run in races I used to run in. If I went shopping, I would only be able to go for maybe an hour. Quite frankly, it stinks. Now, my doctors are telling me that it’s too late for me to carry a baby. I’ve had to have a surgery to ‘un-roof’ some of my cysts because of the pain they were causing me.
If it weren’t for me knowing that I have a place in this world, and a reason to be on this earth, I’m not sure what I would do. I know that God put me in all the places/situations I’ve been in for a reason. I thank God every single day for everything He has given me and continues to bless me with. So, my answer is that I’m so very glad to be breathing. Through Christ, and definitely with HIS help, I can handle anything that comes my way. And this blog is one of the best things that’s happened to me in my journey. So thank you. 🙂
Hi Maranda,
I’m reading through your entire comment feeling for you as we are close in age and then when I get to your next to last sentence, “And this blog is one of the best things that’s happened to me in my journey,” I must admit my eyes are filled with tears of appreciation. That is extremely touching and means so much to me.
I am so deeply sorry that you lost your mom so young. So, your kidneys are functioning fine, but it is the swelling that is causing you the pain, which is making you unable to live your “normal” life that you did before? I remember them doing a few of those “un-roofing” surgeries on me as well before they removed both of my kidneys. I am so sorry that you are dealing with so much pain. Are you in a relationship, or have good support from family and or friends? I sure hope so!
I am thankful to hear of your positive spirit and knowing that you have a place in this world. PKD is difficult to deal with but it sure is nice to know that we are not alone and that PKD Will Not Beat Us! 🙂 Never lose hope! xo
Hi valen – I have enjoyed all the posts! Keep on living life as great as you live it.
Vicki
Hi Vicki,
Thanks so much for your kind words of support and the boost of confidence! 🙂 xo
I truly enjoyed reading this entry; it’s beautiful to see how truly genuine people like you are able to recollect events in a way that makes my own fears of the unknown feel less terrifying. I love knowing PKD is not the end. xoxo
Hi Christy,
Wow, such powerful words! I find it hard to believe that this post and my blog can make you feel that way. I can’t express how much that means. Sort of makes me speechless and very grateful for this beautiful life and meeting wonderful people like you. I have read this several times and it has touched my heart immensely. Thank you Sweet Christy! xoxo
My boyfriend has PKD, and the disease is beginning to progress. He was diagnosed several years ago but has been in a stable state for 5-6 years. This week he was referred back to his nephrologist, and I suppose that although I knew he had the disease, the reality of it has settled in these last couple days. I had done a little research when we first started dating, but it has been the elephant in the room since then because it was somewhat dormant until recently. This latest news has been a little overwhelming, and I felt compelled to search for more information as I want to be as helpful and supportive as possible throughout whatever may lie ahead. I googled PKD and the first link I clicked on lead me to the foundation’s site and the Auburn Journal article. The fact that my boyfriend is from Lincoln, CA gave me a sense of connection to the story and ironically, I worked on a research study conducted for Donate Life in 2008 so I was familiar with the organization as well. I want to thank you for sharing your story. Although it doesn’t cure the disease…..it somehow calmed my frenzy to know that people are living with the disease and moving forward with their lives…..the fact that you live locally just brought it home that much more, someone living right here in this community that is fighting the same fight the man I love is facing. My question to you is, what can I do to support his health and what are the most important things I should know?
Amber I am not local but hopefuly I can help give some insight. My wife has been the best caregiver anyone could ever ask for. She by all means is not a push over towards me, she is stearn when she needs to be and loving always. She has supported me in everything from the studies to the home hemo dialisys. Understand that this PKD thing is just a stepping stone to build a relationship on. It will be a rollercoaster ride for both of you but in the end you will both have a stronger relationship than most people you know.
The most important things to know for me were to educate myself. Know what is avaliable and ask your doctor all kinds of questions. Don’t be afraid to ask, if you do not ask you may never know. Diet is important too. If you can find an organization in your area, attend some meetings they are very helpful.
Anything I can ever do to help I wil do my best to. We are al here for each other so do not hesitate to ask.
Hi James,
Wow! I can’t thank you enough for all of the beautiful and vital advice that you gave to Amber and all of us! I couldn’t have said it better myself and so thankful to know that others have amazing partners to share their life with. We are both very lucky! I hope you are feeling great! Thank you so much for sharing your words of wisdom! xo
Hi Amber,
Thank you so much for reaching out on my blog. What a small world! I can’t believe we live so close. James’s comment/advice is perfect. I could not have said it better myself. There used to be a Sacramento Chapter of the PKD Foundation, but I believe they are looking for a new chapter coordinator right now. They had a Walk for PKD last Fall that I went to and those events are great to go to where you can connect and meet great kindred spirits. I am Valen Cover Keefer if you would like to “friend” me on Facebook and since we are so close, please let me know if there is any assistance I can provide. I have a fantastic nephrologist in Roseville if you are in need of one. I am very thankful to hear that my story was somewhat calming for you during this stressful time. I try and show that one can live a fulfilling life post transplant and with PKD. Please know that you are not alone and that you have a huge PKD family and support system out there if you need it. Asking tons of questions and staying as informed as I can with my health is huge for me. My husband is the biggest help for me, because he is my rock and my support system, which you will be for your boyfriend which is invaluable. Please reach out with any questions as you go through this journey and maybe we can meet sometime since we are practically neighbors!
Hi Valen – I also find your posts very inspirational as I try to prepare for dialysis in the near future. I also have PKD and have known this for over 25 years. I am close to your Mom’s age. Both my Mom and Sister passed away from complications of PKD. My kidney function has deteriorated to Stage 5 over the last few years. My hope was to have a transplant before dialysis was necessary but it doesn’t look like that is going to happen. My best friend is a possible donor so far but they have put us both on hold pending some more testing on my white blood cell count and some spleen issues.
I have an incredible network of friends for support but I have much fear for my future. I have lead a very healthy life so far, with little to no PKD complications. I know I am very lucky. It is comforting to know that you are leading such a fulfilling life after transplant. Once I get over this hill, I hope to continue to lead the fight against PKD by bringing awareness to Kidney Disease and Organ Donation. Please visit my FB page, Kidney4pam and like my page if you can. And, keep your blog going, it truely is inspiring to those of us with PKD.
Blessings,
Pam
Hi Pam,
Thank you for sharing your story. I am very sorry that both your mom and sister have passed from PKD. I am also sorry to hear that you are approaching the dialysis and transplantation stage, but also thankful to hear that you have had many healthy years. I’ll keep my hopes high that you can skip over dialysis and that your best friend will work for you to receive a transplant. It is good that you can admit your fears, but I also hear positivity in your words as well, which is imperative. Transplantation has been a miraculous, beautiful and life changing opportunity for me. I feel wonderful and am able to lead a normal and amazing life and I wish the same for you! Keep your chin up, stay as educated as possible, try and face each new hurdle with as much of a positive attitude as possible. Also, know it is ok to get frustrated, upset and have off days. We are human. The important thing is to get it out of your system, regroup and turn that energy into determination. I liked your page on Facebook. Thank you for your support in my blog. That means so much and is in turn inspiring to me to know that it is inspiring you. It is a beautiful ripple effect. Stay strong and let us know how you are doing as you progress towards receiving a second chance at life! 🙂 xoxo