Just diagnosed and scared...

Hi,

I am newly diagnosed with pkd (3 days ago) under an ultrasound that I have decided to do as my dad and grandad passed away from this (49 and 67 yo) ! I don't have any signs yet, I am 30 yo and scared! I have made so many dreams in my life including my retirement in Spain and being around my grandchildren that I am now afraid I will not live to see :( at the moment I have 3 cysts on my left kidney and 2 on my right ( the biggest is 2cm). GP is not that concerned, therefore I will see a private nephrologist to help me prolong this terrible disease , if possible... I am scared....

16 Replies

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  • Hi Arap88

    I'm sorry at your recent discovery of your PKD and lost relatives through this also.

    The main thing is that now you know your a carrier also you can monitor your health and make improvements where needed i.e. Diet, lifestyle and medication for high BP.

    It's slow growing and many people live into a good age without any visible problems. I have lots of cysts in both kidneys and liver also but don't suffer any pain or side effects. I'm on meds for high blood pressure which don't affect my life. Screening is so important and regular blood tests

    Arm yourself with information as there is a lot of self help you can do. It's very likely your dreams will come true so try not to be downhearted.

    Good Luck 🤗

    Andrea

  • Hi Andrea.

    Read your post it is very encouraging.Can you kindly let me know how old you were when you found out you had PKD.And how old you are now if you do not mind?I am 41 and Recently just found out I had PKD also loads of cysts on my liver.I plan to go see my GP tomorrow to start me on blood pressure mds as it seems to slow down the disease.They wanted me to do a lifestyle change before starting me on the ends.But with this diagnosis I guess I should hurry them up.

  • Hi very worried

    I'm so sorry to hear you've been diagnosed as a PKD patient but try not to let it get you down.

    I was 16 when diagnosed and I'm 57 now. It is a slow developing disease and there are many strains of it.

    My only symptom to this day is high blood pressure to which I take only 1 tablet with no side effects. It's essential to have bloods every 6-12 months so they can monitor your kidney output and be under the supervision of a good kidney specialist. My kidney output is still normal for a person my age. I lead an active and normal life though watch my diet a little with not too much salt, protein and keeping blood pressure low is essential. One of the most important thing is not to smoke.

    My Mum died at my age from kidney failure and brain haemorrhage but I'm nowhere in her league although they have discovered brain aneurysms that can go with PKD but again close monitoring of any change with yearly MRI is important.

    Finally only recently I discovered although I have PKD I've inherited genetic modifiers from my Dad which has slowed the disease over the years. So try not to despair as there is plenty of advice and support also medicine has come along leaps and bounds.

    Good luck and please get in touch for any other info.

    Regards Andrea

  • Hi arap88,

    I too have many cysts on my kidneys with a long family history of young deaths. The difference is they were not aware of the disease or informed of how to care for ones self for longevity.

    I have already outlived my mother by 26 years and plan on being around for a lot more. Do not allow PKD to own you. Do not accept the diagnosis as a disability. I have learned to watch what I eat, be wise in my choice of fluid intake ( no soda pop, due to phosphorous and the caramel in them), i stay away from caffeine, and stay active.

    Don't be afraid to learn everything you can. The enemy (PKD) is only strong if you know nothing about it. As you learn make those aware around you. Stay strong , be a warrior against the disease. Listen to the Nephrologist. Keep the faith and meet this

    head on.

  • Thank you for your responses.. I can not wait for my first appointment with my nephrologist as I have so many questions to ask.. Questions that I could not ask my father as I was sure that I will not inherit the pkd... today I became emotional as I was measuring something at home and I notice that 2cm is quite big for a cyst... reality hit me hard and I could not understand why this happens to me... I stoped already caffeine and I lowered my potassium as it was a bit up on my blood exams.. luckily I was never cooking with salt so the only salt intake I take is when I eat out ( once a week ) ... of course when I ll have my doctor appointment the dr will advise me further... i am sure that it will get better and I will learn living my life knowing that... but for now is shocking ... nothing is the same...

  • Hi I am encouraged by your post.Are you on a vegan diet? Please tell me what kind of diet you are on.

  • I am not on a vegan diet. I am making a decision to not eat foods already prepared, like frozen dinners, or lunch meats or hot dogs they contain so many nitrates. I find kidney friendly recipes, from the Davita and Fresenius websites as well as NKF, PKD anywhere I can. It is a lifestyle change but I am willing to do this so I can postpone dialysis.As long as I can, It takes planning and a little research but worth it in the end. The Davita website has a food tracker that can adjust to your personal needs. Take a lok and see if that will help you.

  • Thank you will check out the website.Another question is how have you been dealing with the psychological effect of the diagnosis.One minute am fine the next minute I can barely function.I get so so scared.How do I handle this.

  • I have the same problem. Up until the first time I actually had blood in my urine and pain in my back it didn't seem real. After that its real.

    I think it helps to journal my thoughts so I can go back and see oh yea that was a bad day and today not so bad. I try to stay busy. I have learned that if I am tired, I take a nap.

    That although it seems like there is so much to do around the house, I have informed my family I need help. I have always been the independent leader, sort of can do person and that has changed.

    I do not allow PKD to rule my life. I think of it like this; I have PKD, PKD is not me. There is so much more to me than a disease that no one can see.I want to advocate and make people aware. Spread the word so to speak.There has been so many advances since I first learned about PKD, we have hope.

    Yes we have HOPE!

    While dialysis is not a cure it is a lifestyle change that will allow me to participate in life. Can I go like a steam engine? Not any more. I can go like the little engine that could.

    I garden, I go out with friends and we still celebrate everyday the life I have.(we is my family)

    Share, share share with everyone. Let them know why you are not as chipper today as yesterday,

    See what happens when someone asks me a question I go on forever. I hope your day increases with joy in all the little things that surround us.

  • 2 cm is not so large for a cyst, I think. My biggest one on CT was 6 cm. I have read they refer to giant cysts for everything over 8 cm.

    In the Tolvaptan studies they most of all look at total kidney volume (TKV). i never had that measured, though. Only kidney length.

    Good luck,

    P.

  • Hi Porphyrogennetos!

    My kidneys are both on 11 cm atm, which is normal size! I wish you good luck ! Btw are you Greek ?

  • 11 is great. Drink lots of water every day, so God willing, your kidneys will grow slowly. Has something to do with ADH I believe, a hormon wich is inhibited with lots of water intake??? And that ADH has an influence in kidney growth???

    It took mine 54 years to grow to their actual size. And I am quite tall, so maybe mine were a bit larger than 11 anyway in early adulthood.

    Nice observation on the Greek nick. But I am not Greek. Your nick sounds Turkish to me because of the 'p' at the end.

    Good luck,

    P.

  • No I am Greek, moved to the U.K. 6 years ago ! Your nickname is a Greek word , therefore I thought I would ask ! I ve never heard of adh hormone , as I mentioned I m newly diagnosed ( haven't done my first appointment ) yet .. what is adh ?

  • ADH is short for antidiuretic hormon. I really do not know is I got it right, but it seems that the reason why we are supposed to drink as much as we can, is that the kidney or whatsoever part it is ceases to send out ADH when there is water overload in the body so that the kidneys evacuate more.

    It is thought I seem to remember that this ADH is involved in cyst growth.

    Some bad tongues say that the main effect of Tolvaptan is to increase thirst:-)

    I know that it is a Greek word. Refers to being born in the room where the Byzantine empresses gave birth, doesn't it? I was being sarcastic when I picked that nick. I mean I was born in a hospital.

    P.

  • That's totally right, porfyrogennetos is one who was born in the Byzantine empire ! I am impressed with your knowledge ! On the other hand , I didn't know about this hormone , great to gather information from all you , I really appreciate it !!! Which stage of pkd are you at? Have a nice evening :)

  • Not really in the Byzantine empire, but in a room in the Imperial Palace with walls covered with a stone called porphyry.

    I am G3 A1.

    P.

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