“This is one of the best diseases to have as it is slow progressing and you should not be affected until your late 40’s to early 50’s,” said my pediatric nephrologist. I vividly remember sitting on the loud white paper on the bed in my doctor’s office when I heard these words.
Being diagnosed with one of the most common life threatening genetic diseases is a little much to comprehend at the age of 10. Little did my doctor, my family or myself know that I would not follow the same family history as my Mom’s side of the family and I would endure every aspect of this disease at a young age.
This statement gave me the message that I did not have to worry about or deal with PKD until I was older. However, this was not the case as I was in and out of the hospital during middle school, high school and college. I spent about a year in the hospital when I was 18 and 19 where both kidneys were removed; I was put on dialysis and received a kidney transplant in 2002.
I got through all of this with the support of my parents however I did not know of the PKD Foundation. Nor did I know that there were so many others out there living with PKD. I was unaware that support groups and chapters existed. I felt alone and different.
I am hoping to play a small part in helping those affected with PKD to not feel alone and different. Also, assist in providing an outlet to connect with others their age. I would like to give back what I was not aware of and did not have growing up with PKD. My hope is that this blog will be an inspirational place to go when one is seeking a positive environment to meet others with PKD, to share ones story, to ask questions and to make life long friendships.
I believe it takes PKD (Positivity – Knowledge – Determination) to ENDPKD.
Valen, what a wonderful impact you have on this disease and to the people who are adapting to this disease.
I have had cysts since I was in my 20’s but have now started in my early 50’s to suffer the effects of declining kidney function. I have finally made it through our Canadian Health Care system to a nephrologist. She was very apathetic about this all and informed me clearly she knew about PKD and that lots of people lived long lives with GFR’s at 50% kidney function…No realization or understanding that this was a declining number for us with PKD. Today at 50% next month at less. No support, no comments on diet etc. Her only advise was if my complaint of feeling tired was an issue, to realize I was getting older and I should get more sleep.. I have been extremely depressed ever since, knowing the outcome that my family has been through, my father passed at 70 from kidney failure. He had been on dialysis for almost 10 years waiting for a transplant. After discovering one of these cysts had grown in his brain his option, was to try and have it removed and he was too weak and passed away shortly after the surgery. My Aunt and cousin have both been diagnosed with kidney failure showing up mostly in our 50s. My Aunt has been fortunate to have had a Kidney Transplant living in Germany. After listening to you speak on the Webinar tonight, you have given me a passion to campaign for this disease and the people who are feeling adrift like I was. I had previously discussed with Jeff Robertson of End PKD Canada, about signing up to became a Chapter Co-Ordinator for our province, Manitoba, and was wondering how I would do it all… I know NOW that turning my depression into determination will be my strength! I will not let my children and Grandchildren feel as helpless as I know my father and mother felt 20 years ago and as my husband and I have felt even now! Thank you, for what you are doing and for what you have done!!
I hope that I get the pleasure of meeting you someday and having you come to Manitoba to speak when we have our Chapter running!!
Thank you again Valen!!! I am sure you have heard this many times but it cannot be said enough! You are an inspiration.
Karen Beckingham
Winnipeg Manitoba
Wow, Karen! Your message gave me goosebumps and I write this with tears in my eyes! Thank you so much for sharing your personal family story. My heart is full of joy knowing that now you know turning your depression into determination will be your strength. My mission and goal for this blog has been fulfilled with this very first comment that you have left. I will treasure your words. I would be honored to speak in Manitoba for your Chapter. I am sending lots of strength your way and cannot express enough how proud I am of you. You are going to do great things and I look forward to staying in touch with you as you get your Chapter up and running! Big hugs!
Valen – Congrats! You are the perfect person to bring hope and inspiration to pkd patients and families all over the world. So happy to have you working on this blog that will no doubt be an inspiration to millions. Keep up the great work – you are an amazing and beautiful spirit with so much to give!
Valen:
I am very thankful for your wonderful contributions to our cause. Your personal stories are bound to impact the lives of thousands who are looking for hope and help in their struggle with the disease.
When will your daily email digest begin? My family and I have signed up but haven’t gotten anything. Also, when will your webinar be available on line? I know PKD said last week but I can’t find it if it is available. Thanks so much for all that you do. Great Job and God Bless
Kelly and Gary, thank you so much for your kinds words of support. I will do my best to make you proud!
Hi Laura! Weekly posts will be made every Thursday and hopefully as this continues, there will be more in between the regular weekly posts. The PKD Foundation should have the webinar posted on their site by the end of this week. Thank you for your support and interest in the blog! 🙂
Having some difficulty entering a comment. Is the third time a charm ??
Yes !!! Third time is a charm. I tried to respond the day of the webinar, but I’m lacking in computer skills. Being “old school”, I’m a tad behind the times with all the new technology available. I was diagnosed with PKD at age 52 and had never heard of the disease until the day my nephalogist casually walked into the exam room on only my second visit to him, and almost jokingly stated, “I hope you have good life insurance !!! You have PKD !!!” BAM !!! And just like that I was introduced to this horrible disease that has consumed our family’s lives for the last five years. The most difficult part for me was exceptance, with having no family history whatsoever of kidney problems, coupled with the fact that I have been working 40 hours a week as a lead finish carpenter for over the previous 18 years plus and no one ever suspected that there was anything wrong with me. I was the poster child of the “King of Denial”, but that didn’t last for long. I was fortunate enough to keep working right up until two weeks before the transplant, was in decent physical shape, avoided having to ever go on dialysis (to the amazement of my same nephralogist), and had a beautiful 23 year old daughter that was more than willing to give her old dad a gift of a lifetime. She was the 7th possible donor to be worked up and on Wednesday, July 28th, 2010, at St. Vincent’s Hospital in Los Angeles, the miracle took place and all went according to God’s plan. The only real downside to the story is that in the process, we found out our son has inherited this nightmare and I curse this horrible “gift that keeps on giving!!” My hope is to gain as much knowledge and information as time progresses to help him deal with what might lie ahead for him. They say you have to take the bitter with the sweet, but that one is a pill very hard to swallow!! I have tons more to share about my journey, and by no means is that journey a sure thing. All I can say for sure is that the transplant changed my life profoundly, and I encourage everyone to consider donation because it is a life changing experience for all involved. There will always be a need, and the bottom line is that we all need to take care of each other if we are to persevere.
Dear John,
Thank you for sharing your wonderful story! Sounds like you have quite a positive outlook for all that you and your family have endured. That’s great! So the statistic of the 50/50 chance of passing PKD on is spot on in your case with your daughter not having it and being able to donate and then your son having it. How old is your son? I hope by all of us sharing our stories it will help to lift all of us up throughout our journeys. That is wonderful that you did not have to do dialysis and had a seamless transition to a transplant. Congratulations! There are no words to describe how powerful the gift of life is. I hope to continue to learn more about you, your family and your story through the different blog posts. Take good care of yourself!
Valen you are amazing. I am so happy to have found your blog. I am also an “atypical” PKD patient. I was diagnosed at 19. I am 39 now and my GFR is less than 30. The crazy thing is that my daughter was diagnosed at 4 years old. She hasn’t been hospitalized, thankfully, but she struggles with a lot of things. They don’t really know what to do for her. It makes me feel much better knowing that you have made it so far! Thanks for sharing!
Aww, thank you Vicki. You being happy that you have found my blog, makes me SO happy! 🙂 How old is your daughter today and are the things that she struggles with PKD related? I hope this blog continues to provide hope for you.
Thk you all for such reassuring comments. This yr I was diagnosed with PKD. Depressed… Yes. “Why Me” thoughts… Yes. I’m 43 this yr and have 4 sons. Thk you for your stories. I needed it. :). xo
Connie, I hope our comments and stories will continue to lift you up and give you hope! 🙂
Valen, Kaylee is 7. She has abdominal pain most of the time. We have been to pediatricians, pediatric nephrologists, and pediatric GI specialists and tried about everything, but they always revert back to the saying that it is “kidney related”. She needs more sleep than many children her age and gets sick easier. She is so funny because now when something is wrong she tells everyone it is because she has kidney disease. It try to laugh about it, but it just feels wrong that is how she sees herself. I need to work with her so together we have a more positive attitude! We are very grateful that her kidneys function normally and she really is a “normal” child. You are a very wonderful example. I am sorry you have been through so much. I have watched my grandfather, then my mother suffer with this disease. I hope and pray advancements make it so my daughter doesn’t have to go through the same things!
Vicki, I always struggle when I have unanswered questions with my health. I hope they are able to get to the bottom of her abdominal pain. I had a lot of pain, but it was mostly in my lower back due to PKD. I also had pancreatitis several times and that caused me severe abdominal pain. I am sure they have done a bunch of blood work and tests to try and get to the route of her pain? She is so young.
I hold on to that same hope, that future children will not have to suffer and endure what others have from this disease. That is what I am fighting for, so others will not have to endure what I have. Wishing you and Kaylee the best of health and hope you will continue to stay in touch.
😉
Thanks so much for yr positive work.
I was diagnonised in my 20’s because of a family history (my father died at 38).
I am now in my early 40’s and apart from having to control my blood pressure I have no symptoms….yet.
For me it is the psychological impact of having an uncertain future that I sometimes struggle with. It is a dark cloud that plays on your mind and when you know relatives have struggled and died it is hard to keep perspective.
This is where knowledge comes in, I believe when you can clearly see your enemy half the battle is won.
Thanks again for increasing knowledge and awareness.
Barrie
Hi Barrie,
Thank you for your kind words and for sharing your personal story. I am so sorry to hear that your father passed away so young. I am thankful to hear that your health is well. It is easy to have the uncertain future weigh on your mind. If I were to think of all of the ‘what if’s’ in my future with needing another transplant some day and all of the side effects of my meds, it would drive me nuts. So, I try and focus on today and take the best care of myself and my health so I’m as strong as I can be for what the future may bring. I try and remain as positive as possible, because our mental strength is just as important as our physical strength. Wishing you all the best and hope you will continue to enjoy my blog. Take care!
I have a lot of unanswered questions.
I live in the UK, I just turned 24, and 6 months ago, I had my right kidney removed, after being diagnosed with PKD. My right kidney was 12 times the size of a normal kidney, and my disease was discovered only a couple of months before the surgery.
About a month ago, I have visited my parents, and have had tests done in another country; to my shock, I had at the time a 3mm stone in my left kidney, a 4 cm cyst on my left ovary, sand in my gallbladder. I have also found a large cyst in my left breast, that is continuously growing, and hurting, which I need to get checked.
I thought everything would be ok after the surgery. I have had a scheduled appointment 3 months post op with my surgeon, which I couldn’t attend. I haven’t seen him since i was hospitalised during surgery. I don’t know what my kidney functionality percentage is, but i have the test results with high uremia, which they’ve asked me to translate, to attach to my file.
I don’t know how to say this, but i feel hopeless. 4 months post op, I have had to return to work 2 jobs, which are keeping me away from home from 8.30 am – around 1am sometimes. This is not easy, and for me, getting out of bed is a lot more difficult than most of the people I work with, or am surrounded by.
I want to get married and have babies and lead a normal life, and I only feel I am walking on a thin rope at high altitude, with no safety net.
I feel awfully alone in this.
Hi Andrea,
I am so sorry to hear of all of the things that you are dealing with. You have been through so much. The thing that provided me with comfort and still to this day is knowledge. Learning as much as I could from my doctors about what is going on with my health and finding out what I can do to help my health has been a huge help for me. Also, support from others…friends and family. Is there a PKD chapter in your area? I am not familiar with the UK. You seem to be juggling a lot with a variety of health issues. Sending lots of strength and positive thoughts your way. I hope that you find this blog helpful.
Hi Valen. I found your blog, and I am starting at the beginning…I plan to read every single word from you and every comment.
My kidney problems began when I was 20 years old in the form of critically high blood pressure. I had severe Scarlet Fever as a young child, and the previous thought was that I had Post-streptococcal glomerulonephritis. After 24 years of “chronic renal insufficiency,” with no definitive diagnosis (dilated collecting ducts, marked renal backflow), I finally have been dealt the PKD card. Multiple ultrasounds prove it. I’m 44 now, and I’m a “mutant.” There is absolutely no family history. I’m told that I have PKD type 2, which explains the slower rate of progression…but now I’m progressing. And I’m frustrated that it took doctors so long to come to this conclusion…not that any of my treatments would’ve been any different!
I have a 16 year old daughter. She shows no symptoms, and I struggle with the decision to have her scanned. Do I allow insurance companies and employers to tag her with this disease when there is a good possibility that she may not have symptoms for years?! She may not even have this! It may stop with me!
I’m lucky & thankful to have come this far with a relatively healthy life managed by a couple of blood pressure pills. I’ve already seen so many posts & comments that mirror my feelings. There is no time table, no crystal ball that will give us answers as to where we’ll be in the progression of the disease as time goes by. It’s a scary place to be, and yet now I see that I’m not alone. And I see positivity all over this blog. So here I am. Thank God I found you.
Hi Lisa,
Wow, thank you for your ambitious support of my blog. I hope you enjoy every one of my posts. 🙂
Thank you for sharing your PKD history. I am sorry that it took so long to diagnosis you with PKD, but thankful you now know so you can educate and take the best care of yourself. I am thankful to hear your positivity as that is a huge part of living with PKD. Positivity, Knowledge & Determination 😉 Please know you are not alone. Thank you for this beautiful message. I am grateful you found my blog and that our paths have crossed. I wish you all the best and hope you enjoy reading my posts. Hugs!