“Did you ever know that you’re my hero,
and everything I would like to be?”…
-from song recorded by Bette Midler
The first memory I have of my mom is her sitting at the kitchen table. I was five years old and I walked into the kitchen and said, “Mommy, my head hurts.” I repeated it several times, each time louder and louder until I fell to the ground and had my first grand mal seizure. When I came to from the seizure the first thing I saw was my mother’s frantic and worried face. It breaks my heart when I think of how many times my health issues have led to that worried-sick look on my beautiful mom’s face.
I admire my mom for surviving the childhood she endured. She did not have a father figure, as he left when she was born. When she was in 3rd to 6th Grade she lived alone in a home with her two siblings during the week and spent the weekends with her mom and her boyfriend. I can’t fathom her being so young and fending for herself during the week. I believe her independent and indefinable personality is due to how she was raised.
When I compare my upbringing–full of support and love–to my mom’s, I feel so blessed and sad to know what my mom had to experience. Even though my mom was not shown unconditional love, she sure knows what that means and how to be an amazing mom. I guess that is something that just happens and is natural for some. My mom gave up everything in life to make sure that I was happy and healthy throughout all of my health challenges. My dad allowed her to stop working when I was young so she could take care of me with my health issues, which started with seizures, then scoliosis back surgery and PKD.
“…I can fly higher than an eagle,
’cause you are the wind beneath my wings.”…
I inherited PKD from my mom. As previously mentioned in an earlier post, her doctor suggested that she get an abortion because of the chance of her passing PKD on to her child. I am so proud of her for staying strong and for bringing me into this world. I have never been bitter or upset for one second that I inherited PKD from my mom. For she inherited it from her mom and it keeps going back in our family history. I am grateful she brought me into this world, for she is my hero.
My mom watched her cousins die from PKD; her mother died at 53 when mom was in her early 20’s; her sister refused dialysis and transplantation and passed away from PKD; and her brother died while on dialysis. She has seen me suffer greatly from this hereditary disease. My mom also passed this disease on to my brother and his 11-year-old son also has PKD. My mother has her original PKD kidneys; her function is doing well and she is the oldest to survive in our family. She is the strongest person I know. Her eyes have seen so much pain and devastation from this disease. I believe she is our rock and here to help us all get through PKD. I hope with all of my heart that she will never have to endure the full effects of PKD. I know that sometimes watching others go through illness is harder than living it. I am in awe by mom’s quiet inner strength.
I smile when I reflect on the fun little memories of my mom. Like how she would make me scrambled eggs with ketchup when I was sick. She would make cinnamon and sugar toast, cut off the crust and slice the toast diagonally. She would make egg sandwiches with the crust removed and cut into four squares. I loved the notes she would write on napkins and put in my packed lunch. She can draw really well, and when I would have field trips at school, she would draw the best pictures on the outside of my brown lunch bag. She was so patient and let me have almost any pet I wanted and took care of all of them. She would stand up for me like no other person. I pity the person that would not be nice to me at school because they would be getting a visit from my mom! She devoted her entire life to caring for me, loving me, helping me, and making sure I enjoyed every healthy day. She sat with me in the bathroom when my belly hurt and would do anything to make me feel better. She held my hand, rubbed my back and gave me the strength to get through the toughest days. I learned so much from my mom. The most important thing I learned is what it feels like to be unconditionally loved.
“…It might have appeared to go unnoticed,
but I’ve got it all here in my heart.
I want you to know I know the truth, of course I know it.
I would be nothing without you.”…
I have not been blessed with the best of health, but I have been blessed with the best parents. Not everyone is fortunate to say that and I wouldn’t trade it for the world. I want my mom to know what a remarkable, beautiful and amazing woman she is. That I continue to learn from her strength and unconditional love and love her more than words could ever express. I live every day to make her proud, proud of the decision to bring me into the world and for her to know how much she means to me. Thank you mom for all that you have and continue to do to make this life of mine wonderful. You are my hero and I want the world to know what a special woman you are. You are a PKD hero that we can all learn from. Thank you for loving me. Thank you for showing me what unconditional love is. Even though we are 3,000 miles apart, I hope you can close your eyes and feel my unconditional love for you as I wrap my arms around you and sing…
“Fly, fly, fly high against the sky,
so high I almost touch the sky.
Thank you, thank you,
thank God for you, the wind beneath my wings.”
Who did you inherit PKD from and how has it affected your other relatives? Did it skip a generation?
I inherited the PKD gene from my Mother. Grandma died before diagnosis but at a young age and we assume it was from kidney failure. (early 60’s) My daughters have it as well as all 3 of my Granddaughters. All but one of my Mother’s siblings were affected. Almost everyone on my Mother’s side has PKD. Some of us also have liver cysts. As you can imagine this disease has impacted our family in a major way. I dealt with the pain and declining function for 30 years. May 26th will be the 2 year anniversary of my kidney transplant. I feel blessed and try not to waste a single moment!
Several members of my family are waiting for “The Call” right now!
Thank you for all you do Valen!
Bob Albert
Hi Bob,
Thank you for sharing your family history. Sounds like yours is very similar to mine in which the 50/50 statistic didn’t apply as it was passed on to practically everyone. I am sorry to hear this and am so very happy that you are coming up on your 2 year anniversary. I share the same sentiment and try not to waste a single moment either! Hoping your family members get “the call” real soon and have the opportunity to receive a second chance like we have been so fortunate to have been given. Thank you for your support and kind words. It is an honor to be able to share my story and connect with all of you. Take good care!
LOVE, LOVE, LOVE this tribute to your mom! Thank you for continuing to inspire and encourage us, Valen and family.
Thank you so very much my sweet friend, Lisa! I hope you and your family are all feeling well and doing great! I sure do miss all of you very much! xo
Great tribute, Valen!
As far as anyone can tell, I am the first in my family. Definitely led to some extra stress for my parents as they had no clear path to handle my diagnosis. This also meant that they had a steep learning curve since there was nobody else in my family who could offer guidance.
Luckily for me they learned quickly and gave me great support!
Hi Tony,
Thank you! I am glad that you enjoyed this tribute to my mom. I am sure it was difficult to try and absorb everything in and learn all that you could about what you had been diagnosed with when there was no family history to fall back on for information and guidance. I know when gaining knowledge, there is a fine line between feeling empowered and overwhelmed. I am thankful to hear that they learned quickly and provide you with great support, that is invaluable.
I inherited PKD from my dad. He received a transplant in CA in 1991, after waiting only a year. I was diagnosed in 1999. My dad died in 2000, from an aortic aneurysm. But he had 9 amazing years with the tiny kidney he received from a 3 yr. old. We figured the PKD came from his day’s side since no one in his mother’s family seemed to have kidney issues. As his father died from a heart attack when he was an infant he was never able to ask about the kidney disease.
He handled his journey with grace and gratitude and made the most of his extra years. He was and still is my role model as I continue my journey with PKD. I thought of him throughout my stay in the hospital when I received my new kidney just 5 months ago. I know he was looking out for me from wherever he is now.
He never did meet the family of his donor, but I have the great fortune to know my living donor, an angel and stranger prior to coming forward to offer a kidney to me. She is an amazing, kind and generous woman who gave me an amazing gift for which I will always be grateful.
I will be doing what I can to help others as they make their journey. One thing that made it a little easier for me was arming myself with knowledge and picking the right doctor and transplant team.
Thank you, Valen, for being willing to share the good and the bad with others.
Hi Kim,
Thank you so much for sharing your family history with us. Your Dad sounds delightful and a wonderful role model for us all. I hope you are feeling great now 5 months from receiving the gift of life. Thank you for sharing your great wisdom of arming yourself with knowledge and picking the right doctor and transplant team. Those have helped me greatly as well as being my own best advocate and taking my medicine on time, every day. Thank you for your kind words and for following my blog. Wishing you all the best with your new kidney and new lease on life! Take care!
Hi Valen! I love this post about your mom. She sounds amazing and I love that you remember all of the things that she has done for you, not matter how big or small. You guys have the kind of relationship that every mother and daughter should have.
My mother gave her kidney to my slightly younger brother three years ago this month. We inherited PKD from our biological father, grandmother, etc. My mom and brother are both doing great. While it seems like a very selfless thing to do (donate an organ), it was not even a question to her, as I would imagine is the case with most moms. My mom worked growing up, so she did not cut the crusts off our sandwiches, but to this day, she still makes my favorite childhood meals when I travel 2,000 miles home and cries a little every time I leave.
Considering all of that you have gone through, I am glad that you have that love and support, Valen. Thanks for sharing with us. Hugs
Hi Jennifer,
Thank you very much for you sweet words about my mom and our priceless relationship. I treasure her and am so thankful for her.
Aww, I smiled reading that your mom makes your favorite childhood meals when you travel home. It is the little things that can provide us great joy and comfort. Organ donors amaze me. How they do such a selfless thing without hesitation. Such a miracle and thankful to hear that your mom and brother are both doing great. I hope that your health is doing well. Curious since you are far away, where you live in relation to where your mom lives. Thank you for this very kind post, which brought a smile to my face. Hugs back! 🙂
I inherited PKD from my mom. She received a kidney transplant in May 2009. She passed away waiting for a liver transplant on Jan.11 2010, which was my oldest daughter’s 16th birthday. I have 4 sisters, and so far only 2 of us have PKD. Last summer, we found out that our 8 year old son has PKD. He seems to be having more problems with his kidneys than I am. I laughed out loud when I read about your mom. My mom always made us chicken noodle soup when we were sick. Cherish every moment you have with your mom.
Hi Julie,
Thank you very much for sharing your family history. I am so sad to learn that your mom passed away waiting for a liver transplant and on a day where she deserved to be celebrating your daughter’s 16th birthday. It is hard for me when I see the little ones with PKD. It breaks my heart knowing that my 11 year old nephew has it. I hope there are wonderful treatments or a cure by time they have to deal with the full effects of the disease. I definitely cherish every moment with my mom and especially now that I don’t get to see her often since we live on opposite sides of the US. Wishing all the best of health to you and your family.
Hello Valen,
I inherited PKD from my father, who inherited it from his father. I was three when my paternal grandfather passed away. My grandfather has polycystic kidneys and liver. At the time there were uncertain of what he had because there wasn’t much information regarding PKD. He had a liver transplant, and died a couple years later because his kidneys failed.
My father was diagnosed with PKD when he was 35, and had a transplant when he was 45. My dad received a transplant from my step-sister who was a 14/16 point match. He is now 53, and the life of the new kidney is reducing each year. The anti-rejection medication has made his immune system susceptible, and since the transplant he has contracted viral meningitis three times. Outside of the meningitis is quality of life has improved significantly.
I found out I had PKD when I was 15. I wasn’t tested for it when my dad was diagnosed, but it was only a couple of years later when my blood pressure was elevated that they decided to test for it. I have had complications ever since, but I don’t let it get me down :D. The most bothersome complication I face is low hemoglobin and hemocrit. My kidneys don’t produce enough of the hormone that signals for the production of more red blood cells, so I am very anemic.
My 13 years of having PKD has taught me to look for other means of health remedies. I am not a fan of medication, and the only prescription medication I take is for my blood pressure. Below is a list of herbal supplements I take that have helped my health significantly, and I highly recommend them for anyone who suffers from the same ailments:
Dandelion root – difficultly urinating, helps with that feeling of not going to the bathroom all of the way (you know exactly what I mean if you suffer from it as well). The first time I completely emptied my bladder after taking it was the best feeling in the world
Chlorophyll – has helped significantly with my anemia. chlorophyll is what makes plants green, and has the same structure as hemocrit which makes the blood red. The body knows exactly what to do with it, and is very effective.
Prescription grade potassium – Most patients have elevated potassium, but I have extremely low potassium that messes with my heart rhythm. The magnesium in the chlorophyll also helps.
Valen, I think it is amazing that you started a blog, and it is very enduring that you have such a close relationship with your mom <3.
Best wishes,
Samantha
Hi Samantha,
Thank you so much for sharing your family history and I am so grateful for you sharing your words of wisdom on herbal supplements. I really appreciate you sharing all of the knowledge. I have to take a lot of supplements too. I have low magnesium, potassium and phosphorus. I have to take supplements for all of these. I also learned that cranberry supplements are fabulous for UTI’s. I started taking these in 2007 and have not had one since (knock on wood) 😉 Thank you very much for your message and your kind words. I hope you will continue to share your thoughts and what you learn along the way. Take good care!
Valen- in response to your questions above. I am in relatively good health (complications but far from renal failure), which I attribute to lifestyle choices (vegetarian) and Cedars Sinai medical team. Especially, since my kidneys are holding up longer than my relatives (I am 36, my brother was in renal failure at 31). And I know that much of it is out of our control, and I am just lucky right now 🙂 My family is in Texas (we grew up in the midwest), with my brother and his family just one mile from my parents. Meanwhile, I am the “crazy” one that moved to California But it is pretty amazing out here and I have my extended network of friends who are like family. Still, I go home every chance I get. My brother’s health problems, and maybe a little maturity, also made him closer to our very small family. They are the first ones I call whenever I have a serious health problem and I know that they are there for me, despite the fact that we do not see each enough. Seriously, I know I say this every time I post on your blog, but I cannot say enough about how inspiring and positive you are. Your mom must be so proud of you!!
Hi Jennifer,
Thankful to hear that your kidneys are holding up longer than your relatives! My husband’s and my family are all in PA and all live within 20 minutes from each other. We were the “crazy” ones that also moved to CA! 🙂 I live in Northern, CA. You in Northern or Southern? Aww, thank you very much for your sweet words. It means a lot!
I got mine from my mom…who is end stage now. With chf mitrovalve prolaspse an numerous other things all because of pkd. Both my brothers an 1 niece has pkd. My uncle on my moms side an his 3 kids all have pkd. My gma didnt but her sister did. Yes my moms mom was pkd free:) im at 70% an my left kidney is the size of a football. I live in Missouri. There r days i struggle to go to work or even get up. But i watched my mom let it consume her n control her. I wont give my hope up that they find a cure. Nor my faith with out it pkd will win an i refuse to let it beat me.
Hi Mary,
Thank you for sharing your family history. So sad to hear of all of those affected in your family. Some days are definitely harder than others and I am happy to hear that you won’t give up hope, nor faith. We must stick together and encourage each other. I commend you for your strength and determination to refuse to let PKD beat you. Never lose hope my friend. I’m here if you ever need anything and hope this blog helps to lift your spirits on the days that you need a pick me up. Big hugs!
I received PKD from my mom. She is 18 1/2 years post transplant! She has many health struggles, but the transplanted kidney is still going. All the new medical personnel we meet are amazed. Our family has been pretty 50/50. My great grandmother was the first to be known to have it. My grandfather was on dialysis for 11 years (one of the first in utah…he is actually famous among Nephrologists here). Our family has some of the other PKD related problems like liver cysts and mitral valve prolapse (none of which have been fatal). I guess we can call PKD a family legacy?
Hi Vicki,
18.5 years wooohoooo, that is wonderful! 🙂 Thank you for sharing your family history and legacy with us! 🙂
I will always cherish this tribute. Every time I hear that song I think of you. My heart always aches when you are not well. I could not be any more proud of you. In fact you amaze me with your generosity of helping others. You are a superb writer, incredible motivational speaker, beautiful, sweet, caring, funny daughter who I love with all my heart.
Oh, sweet mom! I will treasure these words always. Thank you for sharing them so I can read them over and over again. Love you bunches & bunches!
Beautiful.
Thank you very much Adriana!!! 🙂
Thank you all, for the encouraging words. I am 46 years old, and found out about 3 years ago that I have PKD. It was found when an MRI was taken of my back, due to a bad fall. I have not had any health problems to speak of, but thinking back it explains a lot of things of my health history. Always got very dehydrated, even if i felt that I always drank a lot of water. and when I was about 20, my blood work came back funny, as the doctor tried to find out why i was not feeling so good. After talking to my parents in Norway, I found out that my father had something going on with his kidneys, but it was never diagnosed as PKD, until now. He is 81 years old and in fairly good health, but he also, as myself has a lot of digestive problems. When he went to do an ultrasound of his kidneys, they where very enlarged, and vent in for surgery quickly, as they found an almost erupted main blood vein. Myself I eat very healthy, was actually a vegan for many years in the past. Found out that I have a gluten allergy, and also do better without dairy. Now my digestive system is back to normal, as long as I stay away from gluten and dairy. Trying to do a lot of raw food, and make a vegetable/fruit smoothie every morning.
I have a grate concern regarding my three children, my doctor suggested NOT to have them tested for PKD. saying it is not a lot that can be done at this time anyways, and that it would just worry them. He also mentioned that getting health insurance for them, with a possible PKD diagnose would not be easy. I am not sure that I agree, regarding not having them tested. My youngest daughter is 17 years old, and is VERY anemic. She has not been feeling ood for a while. Her doctor is giving her VERY high doses of iron tablets, witch I think could do a lot of harm to her kidneys and other organs. She eats a vegetarian diet (including dairy and eggs), but is not big on getting enough of vegetables. Lots of pasta and pizza etc. She is having a hard time, putting on weight. My oldest daughter was in the emergency room twice this spring due to passing out. They blamed it on not enough sleep and not taking care of herself while studying hard for exams at collage. Does anyone have any good suggestions for me? should they be tested for PKD? I have talked to my children of them possible having PKD, and that they need to eat healthy, don’t drink a lot of alcohol etc. But think it is going in to deaf ears. Any thoughts about my children not having children of their own, to stop the family history of PKD?
Thank you for reading my story, all the best to all of you affected by PKD. May your travel true life be blessed with love and support.
Pia.
Hi Pia,
Thank you very much for sharing your family history with all of us. I know that PKD patients can have digestive issue like diverticulitis. The option of having your children tested and if they should have children is such a personal decision. At every seminar I have been to, the question of having kids tested or not and the issues with health insurance always comes up. Do any of them have high blood pressure? That was the first symptom I had at 10 years old and then they sent me for an ultrasound and I was diagnosed with PKD. Controlling blood pressure is very important for the kidneys. For myself, other than taking blood pressure meds, there was not much that I did differently growing up. I had cyst bleeds and was hospitalized for them. I am 30 and do not have any children and do not plan on it because of all of my other health issues. I feel like I am not in a position to give advice on such monumental decisions. I really feel like you need to follow your gut and your heart. If you want to know, then I would get your children tested. I hope others that have children will respond to your message and maybe provide you with some guidance. Please let me know if there is anything I can do to help you and your family.
Thank you Valen, for your kind thoughts.
As far as I know, my children do not have high blood preasure.Right now, I guess my biggest worry is my youngest lov iron. Talk to you soon.