Hiding my pkd

Hi I am Audra. I was diagnosed with ADPKD in 2013.I've tried to ignore or pretend I'm fine but I can't Amy more with severe headaches, confusion,nausea,and fatigue I'm experiencing, scares the heck put of me.I am 49 years old and I thank God my boyfriend is so helpful and understanding. I just don't know what to do about my symptoms I have not been on any meds nor have I been to any kidney doctor's yet. I know it sounds stupid,but I wasn't ready,till now to admit how sick I really am.Last night I had the worst headache of my life.

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  • Hi Audra, your symptoms are potentially very urgent. Very severe headaches and confusion can be a sign of a ruptured aneurysm, ie an artery in your brain. If this is the case (difficult to tell from a description online) you need immediate medical support. If you're not sure and you're in England, you can call NHS Direct for an assessment to see if you need A&E, a GP, or none. I wish you luck and hope it's nothing urgent!

  • Thanks so much, I finally got my first appt. on the 9th. I'm actually living in California, heard my Dr. is supposed to be great. Just so scared to face the reality of all this. I also worry about getting depressed about all of this, but thank you for the info. Your friend, Audra

  • That's great Audra, so glad to hear you have a doctor appointment. There is a lot you can do to control your symptoms and slow down progression of the disease, so it really helps to face up to it. Glad you're at that stage now. But first you have to make sure the acute things are treated - which could be aneurysm, or your symptoms could also be a cyst infection, for which there are antibiotics. Your doctor will likely refer you to a nephrologist. General doctors are not usually familiar with PKD, but will do the routine checks.

    If you want more information, there's a really good Yahoo group called PKD_uk, not sure if the link works uk.groups.yahoo.com/neo/gro..., and a blog roughlykidneyshaped.wordpre..., the latter also lists more websites like the charities etc.

    Good luck with your journey, hope you'll feel better soon!

  • I know I have a chronic kidney infection. I had sepsis almost 2 years ago, it almost killed me, I went through a week of rocephin injections but it didn't get rid of the infection, I still have it.

  • That must have been scary, Audra! So glad you recovered. I've never heard of chronic kidney infection - you need to get that treated as infection causes damage to the kidneys! But see what your doctor says, and hopefully the nephrologist later.

    As for your questions to tillymint16 - I think she means modifiers as in genetic features she inherited from her dad. There is a drug that has just started to be authorised to slow progression of PKD, it's called Tolvaptan and is available in the US, but it depends very much on your individual case whether you qualify for it or not.

    Let us know how you get on at the doctor's.

  • Hi Audra

    Apologies for my late reply but yes it is essential that you get urgent attention.

    I have brain aneurysms connected with my PKD. I have them monitored yearly by MRI in the UK. The disease itself is very controllable with BP meds for high blood pressure and careful screening. I was diagnosed at 16 . I'm now a health and well middle aged women of 57!

    Please dont ignore this disease as it is not necessarily a death sentence. I also have modifiers from my Dads side of the family with slow the disease down and even at this stage my kidney function is normal.

    The main thing is get your health the best it can be and with mild meds if you need them you can live a normal life. I'm living proof and so are many others!!

    Good wishes

    Andrea 🤗

  • Thank you I will be seen on the morning. No more time for denial. What kind of meds slow down the kidney disease I wonder if they are available here in the US

  • If you could tell me what the modifiers are called I would be so grateful, hopefully before tomorrow thank you so much.

  • Hi Audra

    I was born with the modifiers as they are from my Dads side (Mum was the PKD carrier) she unfortunately passed away when she was my age 28 years ago now. Although I have the same condition it is not in the same severe form because of the modifiers.. it's a common thing so when you start your screening and blood work you too could have them.

    The meds they are trialing in the U.K. Are Tolvaptan which slows down the growth of new cysts .. ask your GP about availability in the US. The most important thing is to the control of High blood pressure if you have it.. I've been on meds for years no problem and no side effects.

    Also watch salt and protein levels in your diet. The most important thing of all is to cut smoking right out of you do. Drink in moderation.

    Good luck for today and try not to be scared... it's a slow developing disease and there is a lot of help available along the way.

    Keep in touch and ask away if you want any info as you go ...

    Regards Andrea😌

  • Thank you so much I will definitely keep you in my thoughts. Stay well. Your friend,

    Audra B. "xoxo"

  • Hi Audra, because you are in the US, I recommend you get in touch with the PKD Foundation. pkdcure.org.

    They have local chapters around the US and there may be one near you.

    As others have said, if you are experiencing severe headaches, you should see a doctor as soon as possible.

  • Thankyou

  • I have not yet heard about those modifiers. This is interesting. I would love to hear more about it.

    P.

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