PKD Will Not Beat Me is my motto, my mission and my passion. It’s how I stand up to our disease and show it who’s in control. It is how I lead my life and I try to encourage others to incorporate this theme into their lives. These five words are a constant reminder that I am strong and that this disease does not define me. Although I look healthy on the outside, I have more than 45 inches of scars that trace my PKD and health journey, as another remembrance that I fought the good fight and will continue to do so. I have and continue to stand up to PKD by equating those three letters to, Positivity, Knowledge and Determination.
Positivity
I believe our bodies follow a positive frame of mind. A pivotal moment in my life was in the beginning of 2002. It was a few days after both of my kidneys were removed. I had a bleeding vessel and four bleeding ulcers in my stomach. They called my family to my hospital room to say their goodbyes because they did not think I would survive the next emergency surgery. I never thought I was going to die nor did I talk about death. I truly believe if I had given up mentally, my body would have followed suit.
It is virtually impossible to be positive all of the time. I have learned the value of letting your emotions out, and then getting back on track right away. I remain positive by being open-hearted, realistic and hopeful.
Knowledge
This component is invaluable. I have learned to be careful with using search engines on the computer. When a new health issue arises, I stay away from chat sites and go right for the facts on sites like the PKD Foundation. I gather as much information as I can, but do not obsess over it, because I trust and rely on my team of doctors for the answers.
Between doctor appointments, if it is not an urgent matter, I keep a list of questions and then I ask my nephrologist/doctor when I see them. I leave with more knowledge and feel more empowered knowing I am taking care of my kidney/health the best I can, to keep my transplanted kidney healthy as long as possible.
Determination
You have to want a good life. You are in control of having the healthiest life you can. You’re not going to feel great every day, but you have to keep moving forward every day. Positivity and knowledge will in turn fuel your determination and desire to take that next step, to go to your doctor, get the necessary blood work and be your own best advocate. You can do it.
Positivity, knowledge and determination are my three healthy weapons that help me look our disease in the ‘kidneys’ and say, ‘PKD Will Not Beat Me!’ We all battle this disease differently. Some of us beat this disease by putting two feet on the floor in the morning and going to dialysis. Others may live their life doing strenuous activities like marathons. Whether you are reading a good book or jumping out of an airplane, you are beating this disease if you are facing it with positivity, knowledge and determination. I like to think that I was born with this positive, old soul to help me along my journey. However, I know that all of us have positivity in us; some of us just need a little more encouragement to let it shine. Believe that you can and you will shine.
How do you not let PKD beat you? Please share stories and photos by using #PKDwillnotbeatme.
I have PKD and loved your story! Thank you for making my day!
Love,
Liza
Aww, thank you very much Liza! This has in turn made my day knowing that you loved this post. 🙂
i love your stories always it helps to read so i can reboot being down at times..i do well basically so this helps me to recharge and keep goin being on dialysis..thankyou valen!
Thank you Dominique! This really means a lot to me! Knowing we are not alone is important and energizing. I’m grateful to be a small part of helping you along your PKD journey! xo
I admire your uplifting attitude. You are an example for others to follow.
Thank you for sharing your thoughtful sentiments Rosemarie. It means a lot.
Very inspiring! Thank you!
Thanks Ellen! I appreciate you reading my blog and glad you enjoyed this post.
Excellent blog Valen! Thank you for sharing your scars- fabulous abs, by the way, wow! I don’t have PKD, I have IgA. I have met several ESRD patients that have PKD. I can empathize to an extent with CKD/ESRD, dialysis issues, staying positive, etc… You and I are A LOT alike! I hope you have checked out my website- I have a blog, too, which I plan on turning it into a book someday….
I’m curious do you belong to your ESRD Network? Mine’s called Heartland Kidney Network. I’m not sure what yours would be called… I think you’d be a fantastic asset!
I look forward to reading your next blog!
Hi Carmen,
Thrilled that you enjoyed this blog and have found common connections between the two of us. Thank you for sharing your website with me. I am not aware of the ESRD Network in my area, but would of course be willing to connect with them if there is one. I appreciate you sharing your story and your recent comments. I look forward to staying in touch and hope you continue to enjoy my blog.
Your story always inspiring us when sometimes we feel a little bitter depression. I have PKD and I am from China. your positive attitude will encourage us and means a lot. last year, I have donated $50 for PKD running at Chicago, it’s very little but I hope everyone could give some strength to end the PKD together.
hope to see your next blog.
Hi Jiang,
Thank you very much for your kind thoughts. It means so much to know that you are from China and reading my blog. So wonderful that you donated $50 for PKD, thank you! Your support is very appreciated. I hope you continue to enjoy my blog. I wish you all the best on your PKD journey.
I have been feeling sick for the last year, one thing after another and then my doctor spotted my PKD on a CT scan a few days ago. I admit I felt really devastated at first and then found your blog and was given a new since of hope. Thank you for your inspiration and your blog it helped me to put things in perspective and not give up. thank you so very much.