How can I find out if I have PKD(polycystic kidney disease) without the expensive genetic testing?

For about 11 years I've had a cyst in my right kidney causing it to enlarge and a liver cyst that was once drained during my gallbladder removal a few years ago.The liver cyst has filled again and my kidney cyst causes severe pain daily.Over the years,I've had ct scans,mri's and sonograms to keep track of how large my kidney has grown.2 out of 3 doctor's(including a nephrologist from the Kidney foundation)suggests I have PKD and has told me that I now need to undergo genetic testing to verify this.I have no health insurance and there is only one income in my household.Due to the daily pain,I am so limited to activities that I can do with my two children.We are so stressed that we cannot get an answer from these "specialist" and can no longer afford any more testing or ER visits.I feel like I am alone.How can i get a diagnosis when i can not afford the testing?I've been to the"sliding scale fee" clinics(they say my husband makes too much money but fail to realise we pay bills with it).

6 Answers

  • 1 decade ago
    Favorite Answer

    Currently there is no cure for PKD, not with conventional medicine or (despite what you have been told) alternative medicine.

    Ultrasound (sonogram) is usually used to diagnose this especially when the cysts are active. Genetic testing confirms the diagnosis. CTs & MRIs can be used but are not ususally required. The extra imaging you have had may have been redundant and unneccessary. For now, get a hold of all your films, reports and labs -- you will need them. The main concern at this time is to prevent or control pain, high blood pressure and UTIs and well as find help.

    You may want to contact the Kidney Foundation and see what they suggest. Call to get an 800 number and check their website. They may have programs for someone in your situation, programs that will give you immediate help.

    My hope is that you can avoid ESRD (end-stage renal disease), kidney failure and transplant.

    I'm not certain if you are eligible for Disability or Supplemental Security Income benefits through the Social Security Administration but it's something to investigate. You would need the medical information I suggested you acquire and any written physician statements you can get concerning the probable diagnosis. If I am able to find additional help for you, a grant perhaps, I will contact you if I'm able.

    God bless you and your family. You're in a very frustrating position but I'm sure there are others who will try to help. You're not alone!

    Source(s): I'm a nurse. Addendum: I see there's no way posted to contact you so I'll give you my e-address:
  • 4 years ago


    Source(s): Improve Kidney Function Today :
  • 1 decade ago

    If you live in Oregon or Washington go to a Providence medical hosp. I had a nasty problem with my kidney when I was in college, I too was broke.

    The Hosp didn't charge me a thing( they're a charity hosp and write off these things.

    The other Doc's involved well...they were not a charity. So, like clock work they got ten bucks a month. You can't miss a payment otherwise they'll want it all.

    So, I would check out the screening at a Providence type(charity hosp) and if it's really pain full, remove it. I did.

    Good luck!

    Source(s): My own experience
  • 1 decade ago

    You need to check into area churches and civic organizations that sponsor "free clinics" during evening hours, in many cities. Genetic testing is simply another "diagnostic" procedure, and will NOT provide you with relief from the PKD. You may be pleasantly surprised to find that there are many "alternative" treatments and procedures that will either alleviate the symptoms, or even possibly CURE the condition, without major expense!

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  • 4 years ago

    I couldn't just sit around and do nothing like my doctors suggested.

    They didn't want me to do anything or to take herbs or herbal remedies, but I had to try something - they just wanted me to do dialysis!

    This program allowed me to take control of my health. I went from Stage 4 to Stage 3 kidney disease.

    It was easy to do and my BUN, creatinine and anemia are all in better ranges.

    Reversing Your Kidney Disease?

  • Anonymous
    1 decade ago

    i feel for you,this disease is genetic as all the women in my family have it. my mom had to have a kidney removed,mine are failing, go to your pastor and count on god!god bless you and your family

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