Were you recently diagnosed with PKD? Living with PKD? Have a loved one with PKD? Looking for hope and inspiration? Welcome to PKD Will Not Beat Me! My mission is to provide Positivity, Knowledge and Determination as you navigate your individual path in life.
This is PKD Will Not Beat Me’s first blog post shared on PKD Connection, however PKD Will Not Beat Me launched on June 21, 2012, with its first blog post Positivity – Knowledge – Determination. Today marks my 112th blog post.
The woman behind the words: I am 31 years old and have lived with PKD for 21 years. I have endured all aspects of the disease from a bilateral nephrectomy, to dialysis and a kidney transplant 12 years ago. As with many PKD families, this disease has had a devastating impact on my family history. It was not until my early 20s that I discovered the PKD Foundation and that others outside of my family were affected by PKD. At that point, it became my passion to provide support, hope and inspiration to those living with PKD and their families. My goal is to exemplify that one can live a fulfilling life post-transplant and with an incurable disease.
I have been a devoted volunteer for the PKD Foundation since 2004. Since my kidney transplant in 2002, it has been an honor to share my story at more than 80 events across North America, raising awareness of PKD and organ donation. I live life enthusiastically, make the most of every day and am passionate about life and giving back. I live in northern CA with my dear husband, Noah. We love nature, travel and exploring the great outdoors.
Over the course of writing this blog over the past two years, I have shared moments of triumph and of challenge:
10 Acts of Kindness
The milestones of my kidney transplant anniversaries and how I have celebrated them.
A Breath of Fresh Air
What inspires me in life, like nature and the beauty that surrounds us.
Family Tree of PKD
How PKD has had an impact on my life and my family.
Filling the Void
I’ve discussed serious PKD topics such as having (or not having) children.
Body Image and a PKD Belly
How our body image can change from our enlarged PKD kidneys.
Message of Love From My Donor
My kidney donor shared why she gave me her kidney.
I have shared moments that have touched me greatly.
My blogs have been written from my home, in airplanes and in hospital beds. Whether the posts are full of excitement or of a serious nature, they are all written with a positive tone.
We did not ask for PKD, but we still have control of how we lead our lives. It is important to be proactive, take the best care of ourselves and live life one day at a time. A lot of our journey depends on staying positive. My goal for PKD Will Not Beat Me is to encourage positivity and provide hope by sharing my first-hand experiences, knowledge and what inspires me. Please know you are not alone. I hope you’ll join me in saying, “PKD Will Not Beat Me.”
If this is your first time reading PKD Will Not Beat Me, thank you very much! I hope you enjoy my blog and welcome to the PKD family.
To my faithful readers, thank you for your continued support of PKD Will Not Beat Me and welcome to its new home. Please subscribe to PKD Connection so you won’t miss my weekly posts every Thursday.
I encourage you to suggest any topics that you would like me to write about in the future.
Just checking in to see what’s new. After reading your latest post, and experiencing the pre-donation waiting, I thought it relevant to discuss low hemoglobin. I have been coasting along very well with my process. My iron levels were stable until about two months ago. I remember posting that I was relieved to avoid another epoteine injection. A rather sudden drop caused some scary episodes of nearly passing out. I went to my doctor when I was able, and after several weeks of injections, I started weekly iron infusions. It was a long five weeks, with the need for sonograms to find my veins, bruising, blow-outs, etc. Thankfully, I am on the up side now, and will return for lab work in a week. Throughout my infusion her apt I had high hopes that my friend would be accepted as a donor. That was really keeping me going. I found out last Friday, the day after my birthday, that she had been denied. I knew that getting really down was not an option. I had just worked through a really big issue, and realized I had to keep my new “slow and steady” motto. I truly believe that every thing really does happen for a reason, even if it feels like a nightmare. Keeping your iron stable when faced with the unknown (and surprising news) is essential. You have to keep going no matter what!
Thank you for sharing your strength and wisdom as you forge ahead on your journey towards a transplant. I can completely relate with how exhausting the infusions are when you have bad veins. I was so happy after those few weeks were over, and I am glad you are over that hurdle as well. I am very sorry that your friend was denied as a donor. I hope the next ray of hope is shining for you. Keep that beautifully strong spirit. I continue to wish you all the best!
Oops. Sorry. For the typos!
My best fried is now in stage 5. She was with a doctor rhat did not serve her with the expectation she would live on his dyalisis machine. Now we have been traveling to orher states to get her on a list.
My question is what is it like with dyalisis and if she did it out of her home couls i be able to take care of her. She has no family for support and only a few friends. I’m going to be tested and am staying positve of the outcome. But she has negitive feelings abou dyalis because when her mom died she was hooked up to this monitor and she was sick all the time. She is so distrat she talked to me about dying and not fighting. Now im scared for her. She has one more test to take and that is the heart test which she is afraid she won’t pass so our focus now is her working out. I’ve hear that the dyalisis has got much easier and she can spead her time out. But she is also concerned that she wount be able to handle the meds with he sensitve stomach. What actions can i take to ease he worry?
Thank you for reaching out and being such an amazing friend. I was on dialysis for seven months. I was very sick at the time and battling several health issues, so I didn’t do the best on it and needed a living kidney donor as quick as possible. I was fortunate to receive a kidney transplant and that was almost 14 years ago! 🙂
I know many people that do well on dialysis and some that do dialysis out of their home. Do you live close to your friend? What state do you live in because maybe I could connect you with other PKD patients in your area. Of course the ideal scenario would be for her to receive a transplant, that is the healthiest option, however we are lucky to have dialysis as our lifeline until a transplant is lined up. I have a sensitive stomach too and do well on the meds. Her doctor can help her with her cocktail of meds to make sure they are the best for her.
As a patient, being surrounded by support and love has been the biggest help along my journey. I’m sure her having your friendship, support and love means more and is helping more than you know. You being tested to be a donor is a big thing you can do to help her and ease her worry and you’re doing that. Thank you for helping your friend and being willing to see if you can be her donor. If you’d like me to try and connect you with others in your area going through the same things, please let me know where you live. Please let me know if you have any other questions and or if there is any way I can help you two. Wishing you all the best!