Out of the corner of my eye, I saw my father walking towards me. I turned my head to the right as I sat in my dialysis chair, and we both gave each other a happy and excited smile. That hopeful day of August 12, 2002 was the last dialysis treatment that I had. He stood by my side as he always has in life, and handed me a present. I excitedly opened it to find a beautiful charm bracelet; the one I am wearing on the cover of my biography, “My Favorite American.” Whenever I wear that special bracelet, it takes me back to that exciting day when I could taste the freedom of no more dialysis.
Last weekend was full of Independence Day celebrations: fireworks, parades, barbeques, picnics, concerts, and family reunions. Everyone was filled with joy while surrounded by the colors of red, white and blue. These festivities sparked the thought that for the more than 103,000 individuals on the kidney transplant waiting list in the United States, freedom means spending their lives free from dialysis. However, I consider those of us with PKD lucky to have a disease where the affected organ has a machine that can be our life bridge and keep us alive until we are fortunate to receive a kidney transplant. Not every transplant candidate can say the same.
Dialysis was quite taxing on my then 19-year-old body. I did not feel well during the seven months of dialysis and got awful cramps during treatments. It was a strange feeling to not have to pee, due to both of my kidneys being removed. I became accustomed to being out with friends and them saying that they had to go to the bathroom and naturally looked at me to see if I did too. Then we would both realize that was not possible and I would wait while they went to the bathroom. There were many diet restrictions and I had to be careful with my fluid intake. I learned quickly that things like ice cream, ice cubes and popsicles would rapidly increase my fluid retention. I would gain several pounds of water weight between dialysis visits, which the machine would then remove during my treatments.
I am thankful every day for the freedom that Sally, my kidney donor, has given me. Next month will be 11 years since my kidney transplant. It is a blessing to have so many years full of freedom by not being tethered to a dialysis machine. I can only wish that my next transplant will be seamless and I can avoid dialysis. Still 11 years later, the sound of peeing is a wonderful thing. It is funny the little things that some people appreciate and some take for granted. I like to believe that although our freedom in life may lessen or increase, depending on what obstacles we are facing, that we have the power within us to find ways in which to celebrate each day that we are alive and well.
I would love to hear your freedom story. Whether you are free from dialysis thanks to a transplant; on dialysis and waiting for a transplant; or in an earlier stage as a PKD survivor; how did you spend your 4th of July and what does your freedom mean to you?
You’ve mentioned another angle that I will my mind to remain positive, that is, about how we are lucky to have an organ that can be supported in order to function.
My freedom story changes as life advances. My latest one is in two parts. When I found out a few weeks ago that I had dropped from 20% to 17%, that number played in my head and I couldn’t let go of that. It was the difference, for me, in having a brave face and making fairly normal life plans and somehow (because of learning of the change) feeling the need to modify plans. I began to struggle with the being brave part.
I had been at the Kidney Care Clinic that morning and, on my way out, the social worker stopped by to see me and he said that I seemed to be handling everything well. I told him “thanks” but also that it was not so. Somehow, just him telling me that I seemed to be coping gave me a moment of a shift in perspective. I walked out of the hospital, back to my car, thinking “I can walk”, “Nobody is assisting me”, I have my sight”, “I have many abilities”, “I AM functioning”.
I fell into many moments and hours of frustration over the next short while. I just kept losing the foresight and the positivity. My decision was two-fold: to resort to reading Valen’s blog and posts for the inspiration, and to restore the rest of my health to the best that I can so that my body will better handle whatever route we end up going (i.e. transplant or dialysis). I lost 6 lbs in the last week. I started back at the gym with yoga and Zumba. I joined the local boxing club. Yes…the boxing club.
We need to keep in tune with ourselves to know what we need and to figure out the source of that need. Mine was people like Valen (and the company of my best friends), and to get strong and not let myself fade away.
Improve every day.
Hi Kim,
Thank you for sharing your freedom story with all of us! Your words and thoughts are so beautifully written…full of great knowledge and insight. Keep that positivity and strength and you can get through anything!!! So thankful to hear you are enjoying my blog and it is helping to inspire you! Stay brave my friend!
Sept. 21st this year will be 5 years for me free from dialysis. Sept. 22 2008 I was fortunate to receive a kidney transplant from an unknown donor. From the morning of the transplant when right after surgery I asked for breakfast. He thought I was crazy. You never realized how great ice cream, jello, water and soup tasted until you have been totally dry for 24 hrs. Later the same day I had a cheese burger for lunch and was going again to the bathroom for the 1st time in nearly 4 years. What a feeling. The little things in life so taken for granted. Four days later I was home and back to work the next day. Life was back to normal.
I will never forget where I was and will never stop the fight for the cure for PKD. After you are lucky enough to be transplanted you have to “PAY IT FOWARD ” there are still many people in need and we should neve forget that.
Hi Mark,
Congratulations on coming up on your five year anniversary. That is tremendous! Thank you for sharing your story, which will encourage all of those with transplantation in their future. Your recovery time is remarkable and a testament to how powerful the gift of life is and how it restores our health. So happy to hear that you are doing so well and how much you soak in and appreciate the little things. Thank you for your passion and dedication to help end PKD and also to Pay It Forward. I hope all of our transplant stories will help motivate the world to give others a second chance like we were so fortunate to be given.
Valen,
Thanks for sharing. You are an inspiration and ray of hope!
Hi Karen,
Thank you so much for reading my blog and for your sweet comment! 🙂
The Fourth of July 2013 was also a day of triumph for me as it was my first day home since my transplant! Two months prior I had a triple bypass I had heart issues several years before but never realized how serious the symptoms were. That’s another story altogether ! The main point is that my Transplant team took me off the list because they felt I needed a stent or? .. Final result was a triple bypass , my heart was on the verge of stopping! In other words, my kidney issues brought attention to serious heart condition and saved my life!… Two months later I received my perfect kidney! I can’t believe how fortunate and blessed I have been.!
To be sure, the fact of having two major surgeries within two months of each other have consequences , but not for my kidney. It’s been fantastic! My problems were all related to atrial fibulation in my heart chamber which could compromise my beautiful kidney. I think it had much to do with all the medications I needed and actually, I was transported back to my transplant team at Baptist Health in Little Rock and they pulled me out of crisis.
My kidney continues to perform like a super star! now! I look forward toward working with dialysis centers and help to improve communication between patients and staff something I became involved with as a dialysis patient. Only now I can devote more time to improve the process.
Hi Art,
Oh my gosh, that is awesome! CONGRATULATIONS!!!!! How amazing that your need for a kidney transplant helped to bring attention to an urgent issue with your heart. I can relate that when our body goes through so much in a short period of time, that it does take a toll on our body, but so glad to hear that your kidney is a trooper and fighting through all of that. My little “bean” is giving high fives to your “super star.” Makes my heart happy to know that you are giving back and using your first hand experiences and knowledge to help others. Way to go!!! Wishing you the best of health! Congratulations on receiving the beautiful gift of life! Take good care!
My husband gave me a kidnney in 2001 after i spent 6 months on Dialysis…I too want to cheer when i pee after those months of no peeing at all
Hi Esther,
Aww, warms my heart to know that your husband saved your life! Congratulations on so many healthy years with your kidney. Wishing you many, many, many more!!! Glad I’m not the only peeing cheerleader! 😉
This blog needs to have a “thumbs up” sign to give to people’s
Responses to Valen’s blog! Also I might add that as Valen’s mom
I am utterly astounded that my daughter continues
To write amazingly well written thought provoking wonderful
Thoughts time and time again. I tell her, “Valen I think this
Was your best blog post yet.” Then she writes another.
I say, “Valen I think it is gonna be hard for you to
Top this post.” Yet she seems to “do it again!” This one touched
My heart in so many levels. We all need to realize
That our super writer inspirational gutsy awesome
Valen is battling other health issues yet somehow finds
The time and desire to write like an accomplished
Pianist plays…so so proud of my daughter. So happy others
Appreciate her.
Oh, Mrs. Cover,
How I love you so mom!!!!! I have read your beautiful words several times. I smile as I can hear you saying, “Valen I think this was your best blog post yet and Valen I think it is gonna be hard for you to top this post.” Your unyielding support and love all of my life is something that is priceless in which I will always treasure. Thank you for believing in me….you are the wind beneath my wings!!!! XO PS I think you are on to something with the “thumbs up” idea! 😉 Love you bunches and bunches!
Thank you for your wonderful story Valen. You are in the palm of God’s hand And such a blessing! Your Mom is right…you are a super writter.
You are in my prayers. Continue on my dear.
Hi Michele,
Thank you for this beautifully inspiring message full of encouragement and love. It touched my mom and I greatly. Thank you so much!
I just seen my transplant Dr, and went thru and she said she gives me a year and a half and I will b on dialysis. That was not music to my ears, as for me, I prefer not to ever go on dialysis. U inspire me in so many ways, Valen, luv to read your blogs. U r an inspiration to all of us, with PKD. When the day comes, if I don’t have a donor, that will b a big decision I will have to make, to go on dialysis, or choose the consequences!!!!
Hi Peggy,
Thank you so much for your kind words and support in reading my blog. Although a year and a half may not sound great, think of all of the years you have had thus far free of dialysis and at a minimum the next year and a half. There is the hope that you could make a seamless transition to a transplant. Your last sentence really spoke to me as my mom’s sister, my aunt, decided not to do dialysis and passed away when I was a teenager. This is still hard for me to digest and I wish she was still alive. My mom’s kidneys are still functioning well and I would be devastated if she would not fight this disease and do dialysis if need be. There are people that live very healthy and active lives on dialysis. We are lucky to have a machine that can do the job of our kidneys. When it comes time for that big decision, please believe in yourself and know that you are strong and can get through anything.
I can’t say more then Mrs Pam Cover.
Valen, all the best from us – me and my son.
Maciej & Fryderyk-arpkd.blogspot.com/
Dear Maciej,
Thank you so very much! I visited your blog and your son is precious! Wishing you nothing but the best and sure hope your son receives the gift of life that he oh-so deserves very soon.
Dear Valen,
I”ve just received call from hospital – we have hope.
Tomorrow can be the day of freedom for my son Fryderyk.
Dear Maciej,
I got goosebumps ready this. I am overflowing with joy for you, Fryderyk and your family. Wishing Fryderyk all the best tomorrow and I can’t wait to hear how well he is doing after receiving the gift of life. Sending lots of strength and love your way!
Dear Valen, Dear All,
After three surgerys and five day’s my son is much better.
There where some complication during and after transplant but this night shows he”s much better.
Blood test seams to be fine and we”re loking forward to go home.
Hopefully in two weeks.
At that day a big smile from Fryderyk will be send to you all.
ARPKD will not beat Fryc!
Dear Maciej,
Once again you gave me goosebumps to read this spectacular news. My heart is overflowing with joy. I can’t thank you enough for sharing this fabulous news. I will anxiously await seeing a picture of that big smile on Fryderyk’s face. Sending all my love! I hope things continue to go smoothly and get better and better each day. xo