There are certain days in our lives that will never be forgotten, either by choice or because the significance of them are burned into our memories. For me, Oct. 12 was one of those days. I was at California Pacific Medical Center in San Francisco getting an endoscopic retrograde cholangiopancreatogram (ERCP) performed. A tube with a camera was passed down my throat and dye was injected to highlight my bile ducts to try to find the mystery cause of my three sepsis episodes over the past year.
After waking up in the recovery room, Noah and I met my doctor in a separate area – a room I’ll never forget. It was small, there were no windows and it’s where I heard the words, “You have primary sclerosing cholangitis (PSC).” As with most things in life, Noah and I never imagine the worse and never expected it to be this.
That short time when the doctor was explaining my procedure results felt surreal. I had trouble believing the words he was saying – that I have a rare autoimmune disease, one in which there is no treatment or cure and that will continue to cause infections and lead to liver failure and the need for a liver transplant. What? How? Why? It felt like an awful nightmare.
I instantly thought of my PKD diagnosis as a child and how different it is to be diagnosed with a disease as an adult. Our whole viewpoint on life is different. We don’t feel invincible and we have a tight grasp on what matters and what we don’t want to lose.
After leaving the hospital, we drove past San Francisco’s famous “Painted Ladies,” the colorful Victorian and Edwardian houses and buildings. We parked our car, got out, walked up the grassy hill across the street from the vibrant architectural scene, and both laid down and held on tight to each other. I was hoping with each breath that all of this would go away or make more sense.
I sat up and grabbed my phone. I wanted to capture this poignant moment in our lives. I held my phone, turned the screen to selfie mode and snapped a picture. The sun was so gorgeous behind me. It made me smile. I thought no matter what news the day brought, there was still light to be seen and enjoyed.
There is no easy way to digest and face a new diagnosis like PSC or PKD. I know I’m still in the denial phase and that it will, unfortunately, feel more real as time progresses. I thought PKD was my life’s big mountain to climb. I’m being reminded of the importance to give myself time, space and compassion. To not dwell on the diagnosis, but make sure I am being honest with myself and my emotions. This has reminded me once again how precious every single day is.
What do you remember from the day you were diagnosed with PKD and how did you deal with your diagnosis?
Valen, I’m so sorry. Sending you positive thoughts that you remain strong and continue to see the light even through tough times.
It is so wonderful to hear from you. Thank you very much for your continued support and sweet sentiments of encouragement – it means a lot. I hope you are doing great! Happy New Year!
At first when kidney specialist explained my diagnoses I thought… “I got this” but oh boy was I in for a surprise. After learning more what pkd is it is tough. I was diagnosed some time in October 2017. I would have never imagined as I have always been health concious. Now I am trying to learn more on PKD and keep positive.
Being diagnosed with a new disease is really tough. We go through different phases of denial and acceptance. Be kind to yourself and know that you are not alone. I hope my blog helps you. If you go to http://www.pkdwillnotbeatme.com, you can read all of my blogs. I’ve been writing for five years and there are more than 200 educational and inspiring articles from my journey. I hope you enjoy them and that they give you some inspiration on your own path with PKD. Wishing you all the best for a healthy and happy New Year.
My mom had PKD and passed away almost 6 months ago, she had a transplant for nearly 15 years, she had to start treatment for lymphoma this year she also was being monitored for heart problems, I’m not sure she would lived much longer even without lymphoma, she did tell me more every day was precious and it was, we spent a lot of time together I can’t imagine Christmas without her, she loved Christmas..
She was 67, from what I understand, PKD life span is around 70..which is why she worried so much about me, the time was coming within the next few years..
She knew it would be hard for me, even In my 40s to live without her..she wanted me to move on, but wanted to be able to spend a little more time with me..so I stayed with her..
If only the lymphoma hadn’t come along, maybe we still had 1 or 2; I christmases left..I know that kidney transplants don’t last, she’d said I’ve been healthy for a long time, I guess she meant that she had been lucky for such a long time..
She did have cardiomyopathy also..
Lymphoma and the heart condition were a result of the transplant..
I have to think about all the wonderful years she had with me and others in her life..
Struggling to figure out how to carry on, looking for a silver lining somewhere somehow..
I came to the site looking for support, I read your story, my heart goes out to you..
It’s so difficult to have chronic illness..
My heart aches for you and I wish I could give you a big hug. Thank you very much for sharing your raw emotions and the reality of what can happen to us because of PKD.
I’m glad to hear that you spent a lot of quality time with your mom. I’m so sorry that she passed, but grateful that she was gifted with an extra 15 years thanks to a transplant.
I’m sure the holidays were very hard for you and I hope that you hung in there and found a bright light through it all and felt close to your mom.
I’m sending healing hugs and love as you find your path of carrying on. If you are interested in reading more of my blogs, you can go to http://www.pkdwillnotbeatme.com and there are more than 200 blogs that I’ve written over the past five years.
Please let me know if there is any way that I can help you. I’m here and you are not alone.
Valen, I wish you all the best and thank you so much for being a voice for PKD! I’m sorry to hear of more health challenges.
My daughter was found to have multiple kidney cysts when she went to the emergency room several times in pain, and needed her gall bladder removed. She was just an undergrad so both diagnoses seemed odd. We were stunned as we knew of no family members w PKD and it sounded scary.
Later the same year I was at my doctor for a check in due to rise in blood pressure. I figured it was age (50s) and weight causing this, but I was sent to the cardiologist as my mitral valve sounded off. An echocardiogram revealed liver cysts. (I could tell the echocardiogram seemed abnormal by the way the technician acted, calling the doctor over.) My primary doctor explained I had liver cysts. If I had PLD, I knew what was next. My primary doctor sent me for an ultrasound of the abdomen. The technician said my liver looked like “Swiss cheese”. (Thanks, but it’s really more like bubble wrap.) in addition to the liver cysts I had kidney cysts.
With PLD and PKD I asked that my primary dr refer me to a PKD center in Boston.
My blood pressure is under better control than ever. I immediately plugged myself into a clinical trial and am very thankful for easy access to doctors. I exercise, eat a healthy diet with limited meat and have been lucky so far with GFR despite the many cysts. I hope to go on tolvaptan when approved or other meds to slow growth of these cysts.
Thank you very much! It is an honor being a voice for PKD.
I appreciate you sharing your path with PKD and how you and your daughter were diagnosed.
I’m so happy to hear that both of you are doing well. You were very wise to get referred to a PKD center. Thank you for sharing what you are doing to be proactive and to take great care of yourself.
Wishing you all the best. Happy New Year!
Hey girl! I have been following you since I got diagnosed in 2012. I am 31 and live close to your area ;). My heart goes out to you dear! I can remember my diagnosis and the following months, years, even to this day, my struggle with acceptance of it. But i always try and remind myself that I am not the disease in my body. I am so much more than that. And you are to. You are a superhero and have given me hope and courage! You story is inspirational and I look up to you on so many levels!
I know you don’t know me but I had to share with you!
Also it is ok to cry and weep and feel angry! I know for me when I have to put my “big girl pants ” on and show my strength for my family and child, sometimes I just want to go in my room and have a good cry. I find healing in that part to. And I just hope for you that u can be gentle with yourself and give yourself what ever you need. We are all here for you! And support you!
Also I live in Roseville. :)I remember you mentioned you live in Auburn I believe?
If you ever need a hug i’m here.
I’m so grateful that you reached out and shared all of this with me. Your super sweet sentiments of support and encouragement mean so much. Thank you for following me since 2012. Your kind words have touched me greatly!
Yes, I live in Auburn! We are only 20 minutes apart! 🙂 Are you on Facebook and/or Instagram? If so, please reach out. I’m listed as: Valen Cover Keefer. My email is email@example.com. I would love to connect. We are also having our third annual Corks for a Cure event on March 3rd in Fair Oaks – raising money and awareness for PKD. Would love to have you join us.
Hope to meet you soon. Happy New Year!