I believe it is normal for children and teenagers to be self-consumed. They are growing, learning and finding their way in life. When they come home from school, they tell their parents about their day. I don’t recall asking my parents about their day!
When I was younger I didn’t worry much about my parents. They were healthy and seemed invincible. I can tell I am aging as I now worry about my parents. I am concerned about their well-being and genuinely interested in learning as much as I can about their lives. I enjoy hearing stories of when they were younger, how they feel, their thoughts and aspirations. I want them to be happy. I wish I would have listened more and talked less as a youngster.
My mom has shared fond memories with me of when she was a child in Loganville, Pennsylvania. It is where her grandparents lived. I always enjoy going to Loganville with my mom, as I know it is special to her and is now special to us. We visit Brown’s Orchards for a delicious lunch and a stroll through the fun market. We then enjoy old fashioned ice cream at a hidden treasure, Carman’s Ice Cream shop. Every time we visit Loganville, my mom is sure to point out the exact house that her grandparents lived in. I feel closer to my family members whom I never met, when we are in Loganville.
On April 8, 2010, during one of our visits to Loganville, my mom and I made a spontaneous detour. We visited the cemetery where several of our family members who died from PKD are buried. It was chilling, emotional and inspiring to watch my mom walk around our family members’ tombstones. She told me who each person was and how I was related to him or her. It was a life-affirming day.
We know that PKD started with my mom’s grandfather, Kervin, who passed away at age 60. My mom’s grandparents had 10 children and my mom’s mom was one of the several children who inherited PKD. A lot of my mom’s aunts, uncles and cousins had PKD. We paid respect to them at their tombstones on that poignant spring day in Loganville, Pennsylvania.
My mom had one half-brother and one sister who passed away from PKD. PKD took Jack’s life at age 60, who was my mom’s half-brother. My mom’s sister, Donna, also died from PKD at 48. Donna lived in North Carolina and I only spent time with her for one week when I was 15 years old. She was in kidney failure and I remember her sitting on the floor of the spare bedroom in our home with curlers in her hair and medicine in plastic bags surrounding her. At that time I did not know she had made the decision to not go on dialysis and to let herself pass away. That was a treasured visit for me. I respect her decision but will never understand it. I wish she had fought.
My mom’s mom, Pauline aka “Mickey,” battled a lot because of PKD. She fought hard. She passed before I was born. I wish I had the opportunity to meet this warrior. I know she was amazing because she created my mom. My mom’s mom started to have issues in her mid 40’s and expired at age 53. She was on dialysis for eight years and the thought of a transplant scared her. Unfortunately, she never made it to that point. Her cysts kept growing and her abdomen became very enlarged. They removed both of her kidneys. Seven weeks following that intense bilateral nephrectomy, her bowels burst. They performed bowel surgery on her but were not successful. She passed away one month later. Her cause of death was she bled to death due to complications of PKD. Tragic.
My mom, Pam, is 57 and was diagnosed in her early 20’s. She has been on high blood pressure medicine since the age of 30. She has her original kidneys which are functioning well. Mom has not had any cyst bleeds and has only occasional pain. I am so thankful she is doing this well. My brother, Brandon, is 36 years old and has PKD. He has four children and knows that his oldest son, Branson, has PKD. I was diagnosed at age 10 and am the youngest in our family to endure such severe side effects from PKD and am the first in the family to receive a kidney transplant.
This is our family tree of PKD. On that moving day in April 2010 when mom and I stood side-by-side in front of the tombstones of our relatives, there were many unanswered questions. We wanted to know more. Why they passed away. Why so young. I was saddened yet felt very fortunate as I could reach out and feel my mom’s warm embrace. Hear her voice. See her beautiful smile. I am proof that we might not always follow the same family history as our loved ones. I encourage you to be inquisitive, ask questions and learn as much as you can about your family tree of PKD while you still have the opportunity to do so.
What does your family tree of PKD look like?
I am 27 and found out I have pkd when I was 23. I had never heard
Of the disease and nobody in my family had it that we knew of. My father
Passed away at 33 from a ruptured aortic anyuresm.. I went to the hospital
To look at his hospital records when I was diagnosed over 20 years later.
The ct report clearly shows he had pkd and all family members should be screened…
Nobody told us. Luckily I am the only other one with pkd. We are trying to stop
It in its tracks too! Valen I wish you would do a post on this. I am currently going through
Invitro fertilization (ivf) in order to do genetic testing. It’s called pgd testing. Although
Expensive it is beyond worth it! The test looks at all embryos to see which embryos are affected
With the gene and which aren’t. Out of 17 eggs we only had 3 non affected.. Crazy.. But the test
Is 99.9% effective and I don’t want my kids to have to fight this horrible disease. It will
Essentially stop it from progressing in my family:) my kidney doc had never even heard of
This testing
Hi Stefanie,
Thank you for sharing your touching family story. I would be interested in learning more about this and writing a blog to get this topic out there and receive the thoughts and opinions from others on this fascinating subject. Please email me at pkdwillnotbeatme@yahoo.com and we can work on this together. Thanks! 🙂
Hey valen- I emailed you:)
Hi Valen- I’m happy you allowed me to bring up the aneurysm topic on your wall OR should I say I never asked permission but it opened up discussion 🙂 OLGERTA- I am seriously bringing up the ‘Chinese doctors’ approach to PKD with my PKD specialist at John Hopkins…’ micro-Chinese medicine osmotherapy which reduces the size of the kidneys and It can dilate the blood vessels, improve blood circulation and increase the blood flow in the kidneys’….
My instincts for years is that there is more that we can do for PKD but the ‘system’ here in the USA at times works very ‘slowly’ which is why people spend money they don’t have to see cures in Europe or other countries. I am ‘speculating’ but it does bother me to know I could have done much more than just eat no salt, control my blood pressure and do MRI’s looking for aneurysms. That doesn’t feel very ‘advanced’ to me and time is not on our side (or should I say ‘my side’ since I am not 20 anymore! Nevertheless, we have to deal with our reality and so I remain optimistic 🙂
I have 7 siblings and 3 of them and including me have polycystic kidney and liver disease, my father and mother don’t have this disease, but they have it carried in their genes (Autosomal Recessive PKD (inherited))
My relatives don’t have this disease it’s rare and recessive in our family
Alhamdulilah, the doctors said that I won’t live till 10 but now I’m 18 years old and still alive, I hope one day this disease is cured, I look at it in the positive side, maybe one day I get to be the reason for making a cure, I will be studying Biomedical Engineering and Inshallah this disease gets cured.
Hi Stefanie,
Great, I look forward to reading your email. Thanks so much! 🙂
Hi I have pkd family Ancestors or royals of Europe every country really Kings ect..new news to me this year also viking ancestors and i pretty sure melungon and Cherokee for sure just learned about melungon as well in2019 tryn to find the sourse of it down the line thought could been all royal inter marriage but that’s on my dad’s side …but never know but people on my moms side are effected my mom was really dark skin …i read first case was South America in. Brazil. A portigeus was first know case in this area..have read about melungon could be part portigeus and Cherokee and Euopean and some sub groups could differ any info be helpful thanks
i’m so sorry
I was the first one diagnosed when I was 30 (I’m now 38). My mother kinda freaked out, and got her kidneys scanned, and then made my father do the same. It became clear from the scan that I inherited it from my father. He is now 80, and has never had secondary issues–no high blood pressure, pain, etc. To our knowledge, none of his brothers or sisters have it, or if they do, everybody is sure managing it well, as he’s the youngest at age 80. He did have uncles, however, who died from heart issues at very young ages, but this was in the mid 1900s (my grandfather was born in 1898—we’re an old family), so I’m not sure anybody was looking for PKD. I have two children. My oldest, my son, was born before I was diagnosed, and we decided to try to have another one after my diagnosis. I worry about them all the time, but am hopeful that if they have inherited this disease, they will look more like my father than like me.
Hi Heather,
Wow! Thank you very much for sharing your family story as it is quite encouraging. Although you have PKD genes, they seem to be healthy ones. 🙂 It is fantastic that your father is 80 and so healthy. It gives encouragement that not all of us will experience kidney failure at a young age due to this disease. I appreciate you sharing as this gives all of us a different perspective on living with PKD. Wishing you and your family the same health as your father has.
Just before my Dads Mom died she confessed that he was adopted. His birth Father died at 42, we assume he had PKD. It was in the 20’s. My Father had failure at 48, dialysis, 2 transplants and died at 58 from complications. He was only aware that I had the disease at that time it was very hard.
I am 60 with PKD. I had failure at 40, went on dialysis for 8 months, transplant at 40. My transplant was from my brother. Another brother had failure 10 years later at 50, transplant from our youngest brother. A sister had failure at 50, 8 years later. The youngest sister was going to donate but couldn’t because of blood pressure. Beware, she doesn’t have high blood pressure but was nervous that day and caused the team to say NO! My sister is waiting for a transplant but it doesn’t look good for her.
So far we know that 2 out if 3 of my children have it. We don’t know yet about their cousins. I am more concerned about my children than myself. You never want to see your children suffer.
I am so excited for every VOICE that is bringing PKD out in the open. I sure hope our team on the Amazing Race wins!!!
Hi Karen,
Thank you for sharing your powerful family story as it exemplifies the great impact and reality that this disease can have on an entire family. I too share your concern about the younger generations. However, I see how much medical advancement has taken place since my transplant 11 years ago and I hold onto so much hope that things are going to get much better for future generations. All my best to you and your family!
My name is Paula and I had a living donor transplant two years ago. I am the second of five siblings to receive a living donor transplant. My father and his only brother had PKD and both passed after being on dialysis for a period of time. Neither one was eligible for a transplant at the time. Out of five children in our family four of us inherited the disease. My father started dialysis at about age 55 and my uncle at about age 60. My oldest brother received his transplant at age 46 and I had mine at age 47. My younger sister is now in the process of preparing for a transplant and is looking for a living donor. She will be 48 when she has her transplant. My youngest brother is 46 and is headed towards transplant soon..maybe a year or two. I always thought we would be affected like my father and not have our symptoms begin so early but I have to remember that we inherit genes from our mother too so one never knows. We have not had any of our children tested because I value my life and would not wish to not be here. Despite PKD my life has been great and it has taught me so much about being compassionate and understanding that we cannot always see what is wrong with people on the outside. There are many days when I see others at the hospital or out in the world who have it much worse and I thank God I have PKD and not something worse. I am not minimizing this disease just recognizing that there are so many suffering with other illnesses. There will be a cure one day. Thanks to all those who are organ donors and who are living donors giving us a new lease on life.
Hi Paula,
Beautifully said. It is saddening to read how greatly impacted your family has been with PKD, but it makes me happy to see how positive you are through everything. That attitude really helps to put things in perspective and I appreciate you sharing that wisdom and your positive spirit for all of us to learn from. Keeping smiling and enjoying your precious gift of life.
My father died two years ago from polycystic kidney’s. He had his first transplant at 40, the day I left for college. It lasted for almost 20 years, then he had a second transplant, that didn’t last very long. He was on dialysis, which he said he would never do, I think it was more for us, than himself. He became ill,and we knew this was not how he wanted to live anymore,he passed away at 63. My grandfather passed away in his early 50’s from pkd. My dad’s brother has also received, two transplants. I have been avoiding a physical, but I know it’s time. I was diagnosed several years ago, but have not had any problems, having them checked the end of the month, hope all goes well.
Hi Angie,
That is great that your father’s transplant lasted almost 20 years. I am sorry that he has passed. I am thankful to hear that you have not had any problems and sending all my positive thoughts for a great check-up this month. 🙂
Thanks for sharing your family tree Valen. My father left me quite a bit of information (and a family tree) before he passed away at age 65 (8 years on Dialysis and a failed transplant). As you know (and I am thinking of Stefanie Staggs who responded to this post) that I survived a brain aneurysm at age 32. I knew so much about PKD since my teens from my father but I did not know a small percent were prone to Berry Aneurysms until I woke up and had one on a regular summer on way to work. My brother does not have PKD. My fathers side – his mother, brother, sister all passed from PKD before the age of 65. I do have MRI/MRA checking for aneurysms every 2 or 3 years ‘now that I know’. I do not think this is discussed often in PKD forums and I always wonder if others now the ‘aneurysm’ connection. Thank you for sharing your life with us. It helps me, it helps everyone of us. As of this year, I was told ‘about 5 more years before transplant’ but we all know kidney function is not predictable & so I just live life NOW and remain HOPEFUL. I do appreciate successful transplant stories since my father did not that.
Hi Adriana,
Thank you for sharing your family tree with us. It is priceless that your father gave you insight into your family history. It is wonderful to have this knowledge and be as educated as we can on the history of our loved ones even if we don’t follow the same path. Aneurysms are such a serious issue and I appreciate you bringing this to our attention. I agree that is does not seem to be discussed often enough. Diverticulitis is something that I do not hear discussed often and is something my mom deals with because of PKD. We can all learn so much from each other. Thank you for all of your support and helping others learn from your personal experiences. Big hugs!
We, too, are a polycystic kidney disease family. My father died at age 42, just after having his first transplant. He was still in the hospital for the transplant when he suffered a ruptured aortic aneurysm. His brother, however, did not even need dialysis until he was in his 70’s. I did not inherit the disease, but both of my brothers, 3 cousins, and now at least 1 nephew has it. I know my grandmother had the disease and died at about age 55 (in the 1950’s). Her maiden name was Saalberg, changed to Salberg. Her father immigrated to the US from Germany in the late 1800’s directly to the small town of Navarre, Ohio, in Stark County. Some have said our family may contain both ADPKD 1 and 2. My brothers are both in their early 50’s and not yet needing any dialysis. I, on the other hand, always thought I would be the obvious kidney donor. Now I am concerned that as I reach age 60, my own kidney’s won’t have much transplant value, but I guess that is considered on a case-by-case basis. We also inherited Lynch Syndrome from my father’s side of the family. I have tested positive for Lynch syndrome, essentially a non-related MSH6 bowel and other cancers disease. I have had my own DNA mapped. I don’t know if it would be of use to anyone. I thought there might be someone connected to the Salberg family in Ohio, or perhaps the Wishman/Wischmann, I believe another German family, who had the kidney disease. I am interested in family tree mapping or donating my own DNA if it is of any use. My brothers have both been screened for aortic aneurysm and the Berry cysts and they have no been found, so far. They both have had high blood pressure for many years and were both diagnosed for kidney disease in their teens. I thought it may help people to know that at some point renal failure means they are likely eligible for disability.
Hi Susan! Thank you very much for sharing your fascinating PKD family history for all of us to learn from. I’m so sorry for all of the loss that you have experienced from this “family disease” and wishing you and your loved ones all of the best! <3
ihello, my familynalsomhas both pkd and lynvpch gene. i havnt been tested but we only learned about it a few years back when one of my sisters had colon cancer and was tested for lynch gene, she called me needing family history and i called a cousin that had the genealogy on our moms side. many had passed young from colon cancer. also learned my moms mother and her mother both died of complications of pkd. i have no history to go on from my fa4hers side other than most of his brothers as well as my father died young from some form of cancer my dads was lungs then brain cancer and he was onky 43 when he passed. theres a cousin on his side i didnt know but her obituary said she had non hodgekins when young and beat it but she passed away from pancreatic cancer at a young age. no children. after my sisters colon cancer surgery and while gathering this info on famioy history another sister ended up with lung cancer and skin cancer that went to her brain and she too tested positive for lynch. i havnt been tested. i was battling hep c. i informed my adult children of what id learned and now i see symptoms of okd in both my twin daughters and i know one daughters son my grandbaby was born with an enlarged kidney but they didnt test him? its still enlarged. im sick with worry and my daughter is now showing concern as her own heakth too has taken a turn for tgecworse. i just moved to be closer to her but im still 2 hrs away. theyre struggling financially and im making calls re insurance so they can get tests ..i dont know if my son has it or if any of his children do or if my other daughters kids do or if nine of them do because no one has gotten tested .. im petrified ..this last year my sister that first called about the lynch gene? her son passed. he had the lynch gene, her daughter has it. my gosh why can i not get my kids to hear what has to be done? my dr told me i dont need a gene test bacause of my age and my tests from hep c but he felt my children definitely should and i agree. we dont know much more than what im telling you. im happy to have found this site. i wish all here the very best and hope there will be a cure for these illnesses soon. if they can find a gene for it u woukd think finding the cure woukd b somewhat on the horizon? i did read an article about some science professors at uc davis in california finding that the keto diet showed promise for curing pkd? a dr wendt , he is on facebook. both my daughters are total vegans and my son has gone to a keto diet he states because it makes him feel more energetic. i have nothing to go on right now as far as my children but im so concerned for my youngest grandson. i want him to be tested today. yesterday. why do wevhave to go thru so many hoops. get in medicaid. get a primary dr. get a referral if we can for nephrologist and getbthat baby tested for pkd and then we need the gene test for lynch? its phonecalls after phonecalls and paperwork all while covid restrictions have been in place. meanwhile ….i cant imagine what coukd happen?! and im afraud to even let my thoughts go there or i wont be able to focus on gettinfpg every document they want at dpss. its very frustrating.
Hi
I have pkd from my beautiful mom. She died from a brain aneurysm at 36yrs. We were told she had a very bad headache and died by relatives. I spent most of my teenage, early adult life thinking I was gonna die if I had a headache so I suffered from anxiety growing up. So happy to hear your mom shared your hx with you as that will continue to keep you strong! My mom was a single mom of 4 kids. No one knew what happened we were just kids coming home from school nd our world was turned upside down. When she died her youngest was 6 oldest 18, me in middle. This was back in the late 70’s. Since everyone under 18 went into the system to be raised I knew nothing of my family hx. I fell down some steps when I was 42 nd a trip to the ER led to my dx. As far as I know I am the only child in family w/pkd. I have 2 kids who have chosen not to get tested. Due to my moms death I have never had contact w/family except 1-sister/brother. Doctors tell me on paper I look normal but inside a mess. I have been on bp meds nd gerd meds since dx. I recently March 2014 underwent a b/l deroofing. Have have many aspirations due to my cysts like to grow big, some cysts were almost 17 cm. Feel good today and blessed. Valen I am happy I found you your amazing and Give me strength to continue to do this! Thank you I would love to meet you someday 🙂
Dear Sharon,
I type this with tears in my eyes and wish I could give you a big hug. When I read your first sentence, “I have PKD from my beautiful mom,” I smiled as I feel the same way and would word it the same way. Then as I read your message I continued to be touched more and more and my heart aches for what you have endured and losing your mom so young. It also made me think of my mom and her mom, because my mom lost her mom in her early 20’s. While she was older than you, my mom tells me how she dealt with/deals with anxiety for fear that she would go through all her mom went through at a young age. It just breaks my heart to know that you and your siblings were separated and that you were oblivious to your history. Thank you for sharing your extremely powerful story. This has really touched my heart. I am glad you are feeling well today and sure hope that continues for a very long time…forever. Thank you for your kind words. I would love to meet you too. Where do you live? I live in Northern CA. If you are ever in the area, please let me know and I can give you that hug in person. Sending all my love!
Valen thanks for the big hug today. I try to dream of my mom daily sometimes it is hard other days it is so easy it scares me. I live in West Michigan now actually lived in CA for 17 yrs. I would love to meet you too!
Dear Sharon- I had discussed aneurysms with Valen a few hours ago and then I found your heart breaking post. I felt a lot when I read it since I survived the aneurysm in my early 30’s. I honestly did not even know what an aneurysm was even though I knew so much about PKD. I understand how lucky I am. I’m so sorry for your loss. I also suffer from anxiety (a lot) that I try to control ‘mentally’ through yoga and positive thinking. Every time I have a headache it’s an ordeal..’is it stress, is it the lap top or is it another aneurysm’. This is how 2013 started for me this year. A massive migraine which I have not had one for 10yrs. Fear & Anxiety kicked in 100%. I’ll stop here. I just wanted to say I’m sorry for your loss and I feel touched by every post I read. Valen, I never bring up Diverticulitis but I have this too. Had a colonoscopy years ago. GERD/IBS/Cysts on liver too…like Sharon said I look so NORMAL on the outside but the insides…not so GREAT. I know we all function and make it ‘look easy’ but I know what goes on ‘inside& mentally’. This is a great support group Valen. I guess we’ll be thanking you for a very long time!
Hi Adriana,
No thanks ever needed. My heart is filled with such joy by meeting all of you and seeing all of the wonderful interactions and support. xoxo
Hi! Congratulations for your courage! I have PKD too, and my only obsticle is the blood pressure which is high sometimes, and I try keeping it under control with 10 mg of lisinopril/ day. I do not have any pain thanks God. But recently I have been in touch with a doctor in China, which is informing me about a cure called micro-Chinese medicine osmotherapy which reduces the size of the kidneys and It can dilate the blood vessels, improve blood circulation and increase the blood flow in the kidneys. After the blood and oxygen supply in the kidneys is sufficient, the self renewal of the damaged kidney cells will be reactivated, thus improving the kidney function. After the microcirculation on the cysts walls is increased and the permeability increased, the cyst liquid will be reabsorbed and discharged out in urine with blood circulation. Have you ever heard about it? Share any information you have,please! Best wishes for you! 🙂
Olgerta, just to share I have seen that website from China (with the live doctors who share this information you mentioned ) many times when I google news on PKD. As involved as I am with my doctors and the ton of material I read, at times I find it hard to believe ‘there is not more that can be done’. I can’t tell if it’s a USA ‘thought’ and other countries get to be more forward thinking or what the truth is. I just know Western doctors here in the USA do not like to ‘take chances and experiment’ due to law suits. If I had serious cash flow, I’d be totally involved in the Holistic Centers here in Washington DC but paying out of pocket is not an option for many of us. I know a wonderful doctor from China at an Integrative Center in D.C. but I can’t afford him. I did see him once when I was having auto immune problems 10yrs ago but it all went to credit card debt. I guess none of this is helpful but deep inside I believe there is ‘more to the cure’ than we know. I have no proof of this it is just a feeling.
The cost of the cure I mentioned is about $5000 with hospitalization included … not mentioning the travelling cost… I have seen the procedure in youtube and it seems hopeful but I do not have any concrete experience from someone, and this makes me somehow dubious….
Olgerta, it sounds promising and we can’t rule anything out. I think I’ll bring it up with my doctor at John Hopkins next month at our appointment to see how she responds. I’m a travel agent and flying comes easy for me but not 5K!
Thnx Adriana for your collaboration 🙂 Waiting for your comment! Regards! 🙂
Hi there 🙂 I am optimistic too… I am in contact from 6 months now with one of the Chinese doctors, and ask her for advice and send to her my last blood test results, and she keeps saying that everything is functioning ok , and luckily I have never experienced any pain….. But still, I have ups and downs with my blood pressure and I fear a second obliged abort since I had one last year as a result of high blood pressure 🙁 Only the idea of having a baby pushes me to prove this method that seems promising…. I am in a cross road… Yet I have not decided what to do…. Hugs to you Adriana 🙂
Hi Olgerta,
I had not heard of this option before and appreciate you sharing this which started the interesting conversation between you and Adriana. I enjoyed reading the correspondence between the two of you and learning new information. Adriana, I look forward to hearing what Dr. Watnick thinks of this. I feel that some people underestimate how important it is to control our blood pressure. I take metoprolol and norvasc and sometimes spirnolactone to control my blood pressure. If we let our blood pressure remain high for a significant amount of time, it can cause scaring on our kidneys. I take my blood pressure very regularly. Thank you to both of you for sharing your personal thoughts and knowledge.
Hi Valen… I take only 5 mg of lisinopril in the morning and 5 mg in the evening, but sometimes I catch it 150/10 and it scares me 🙁 I do not feel anything even when it is high…. This week I am seeing my doctor and maybe I will make any change to my cure… Hoping to hear good news from Adriana soon ….
Hi Olgerta,
I spoke with my doctor last week about my blood pressure because I am having trouble controlling it due to a recent cortisone shot that I received for back issues. They said if it gets to 160/100 that is when it is concerning that other complications could occur like a stroke. I am very sensitive to my blood pressure and if it is high I get a headache and feel foggy and when it is low I get dizzy.
yes the first ‘serious task’ I had with PKD at age 30 was controlling the blood pressure. Over the years I have found Micardis 80mg/25 to suit me best (sadly it is also the more pricey option but my nephrologist at Georgetown university (4yrs ago) told me it had heart protective value as well. I guess I’ll pay $25.00 more a month for ‘added value’ ha. I did try Losarthan for 2 years and I had a dry cough for 2 years DAILY which was ‘a mystery’ ….no doctor could tell me why I had this nonstop daily all day hoarse dry cough. I decided it could be the Losarthan and asked to change it. Bingo…once I was on Micardis for one month, I never had the dry cough again!! Took me 2 yrs to figure it out and CRAZY that a doctor did not! Sharing this for others who might have ‘peculiar symptoms’ with ‘no reason’…it’s not all in your head 🙂
Hi Adriana,
I love that you shared this, as I have learned time and time again how amazing and peculiar it is how our bodies react to the medicines that we take. Thank you!
Thank you so much for sharing your family tree. I am 36 and currently trying to find mine out. I am adopted and was diagnosed several years ago while pregnant.
Recently we were able to find my biological mother and unfortunately she is in her early 50’s and is in full renal failure and apparently was not a candidate for a transplant so is on dialysis. Not ever having had any previous history of the family history it is someone overwhelming. We just always hoped it would be one of those family trees where no one really knew they had it and it just sat dormant.
The family tree becomes so important when the unknown looms.
So our journey goes on but in a new direction now. We will continue to search so that my 3 boys will know as much as they can about their family PKD tree.
Hi Cara,
Thank you so much for sharing your story. I admire and commend your determination to learn as much as you can about your family tree. I am thankful that you were able to find your biological mother and learn some of your family history with PKD. I hope your health is doing well and that you and your three boys will be healthy for many, many, many years with minimal complications from PKD.
Your courageous approach to PKD is admirable. I also have ADPKD and Pigmentary Glaucome (inherited). One of the problems I face is poor record keeping and diagnoses of mortality. With contemporary, better, medical documentation more informed genetic decisions will be possible.
Hi Eugenia,
Thank you for sharing. I wish you the best on your PKD journey.
After reading some of the other comments I wish to offer my opinion that the Chinese treatments and cures are a poor decision. The claims they make are unsubstantiated and the Internet advertising is designed to prey on sick people. There are o many wonderful U.S. hospitals why would anyone take a chance on a “miracle cure”?
Hello! I am 29 and I was diagnosed with PKD 4 years ago during a rutine scan. Until a couple days ago I thought I was the only person in my family that had symptoms. However, my mom recently told me that her uncle, who is in his 80s, also has it. This means that my mum must have it too, but she got checked doctors didn’t mention anything. I don’t know how through they were… She must have it if I do. Recently I was diagnosed with pre hypertension, my anxiety gas been through the roof, I can’t sleep, I can’t think about anything else. If anyone has any relaxation ideas please let me know.
I think it is important that people also know that 2 different types of dialysis that may be available to them. There is dialysis accessed by graft and then there is dialysis accessed by a plastic tube, where, in a sterile transfer the patient may be able to do at home themselves, another plastic tube is physically screwed onto their abdominal tube and the lining of the abdominal cavity is used to push/pull fluids over the abdominal cavity membrane. (Peritoneal Dialysis). I wonder if “PICC” lines may also be used or not by dialysis patients. PICC lines are somewhat permanent IV lines where blood may be drawn out of, to avoid direct puncture of the vein for blood testing purposes. There may be a risk of infection or other reason that PICC lines would not be used–I don’t know.
Thank you for sharing this info for the readers to learn from. I had a double lumen central venous catheter placed around my left collar bone and that is where I had dialysis done for around seven months.
I am 63 and recently diagnosed with pkd. It was a chance ultrasound that started this all, but my blood work should have raised flags for some alert doctor. Except for this & my high blood pressure, I am very healthy. No one in my family has had symptoms so I am alerting my siblings, and my children. My mother died at 65 of ovarian cancer & that has been hanging over my head ever since. But now, my ovaries look good but everything else is out of control. As they used to say on SNL, It’s always something! I found your story and the other comments comforting. Thanks.
Hi Beth,
Thank you for sharing your PKD story with us. I am sorry that you were just diagnosed with PKD, but it is wonderful that you are 63 and haven’t had any major complications from the disease. Great idea to alert your loved ones about it and I hope none of them have PKD. I’m so glad to hear that my story and the other comments have provided some comfort during this uncertain time in your life. Please let me know if there is any way that I can help you on your path with PKD and please know that you are not alone. Wishing you all the best!
I have PKD and had a live donor kidney transplant in 2003 at the age of 52. I was diagnosed with PKD at the age of 10 in 1960. We subsequently discovered my Dad was the one with them. I was put on high blood pressure meds at the age of 21 and am still on them. My older brother has had a heart-kidney transplant, and my younger brother passed away at the age of 55. He was on dialysis and had CHF. My husband donated a kidney to me, and it is still well within normal range. I was the first and youngest one diagnosed in my family. I have been doing my family ancestry for a couple years now, and believe I have pinpointed the ancestor who brought them into our family. There is a possibility she was part Cherokee, but I have not definitively discovered this. I endured pain, bleeding, multiple bladder infections from the age of 10. Last year, at the age of 68, I had both native kidneys removed and that, for the first time in my life, ended by recurring bladder infections! Even though my native kidneys had zero function (based on nuclear testing), they had a smorgasbord of infection in both that was slowly leaking into my bladder. I cannot praise the doctor enough who discovered this! No more long-term antibiotics! I hope and pray that others do as well as I have done. All the best!
Hi Kathryn,
Thank you very much for sharing your family history. So fun how you have been doing your family ancestry. What routes have you taken to learn the history of your family tree? I would love to do the same. I am 38 now and had my kidney transplant almost 19 years ago and my liver transplant almost 3 years ago. It is so encouraging to hear how well you’re doing at your age. It gives me hope! And I’m so glad they removed both of your kidneys. What a blessing to be off of antibiotics and free of infections. Hallelujah! I had both of my gigantic kidneys removed when I was 18 because the cysts would not stop bleeding and they would have killed me. My kidneys were working 60% when removed. Wishing you all the very best!