My husband's daughter was diagnosed w/ PKD almost 20 years ago. About 90% of PKD is inherited so her mother immediately began searching for an ancestor on either side of the family. Since we could find no one w/ kidney problems, we concluded that his daughter was one of the 10% who acquired PKD because of a genetic mutation. We didn't know we were wrong until a little over a year ago. Two weeks ago his 30 year old son was also diagnosed -- creatinine 1.9
My husband, Mike, was diagnosed w/ high blood pressure about 15 years ago. After many years of many, many changes in his medications -- combinations and dosages -- which never lowered his pressure below 130/90 and usually much higher, he had blood work for a routine physical. On the bottom the GP wrote: "kidney function borderline, recheck in 6 mos". Despite PKD being the most common inherited genetic disease, we didn't know that high blood pressure is usually the first symptom of PKD, so Mike had never had his kidneys checked!
Six months later the GP made the same notation: "kidney function borderline, recheck in 6 mos."
After months of my nagging Mike finally requested a referral for an ultrasound. His right kidney looked like a quart sized clump of red globe grapes, and the left not much better. A CT scan showed he still had some functioning kidney material inside the kidneys -- that was 18 months ago.
Currently his creatinine is about 4.3 GFR about 15. His is on an ace inhibitor and bicarbonate of soda, both of which have anecdotally been shown to slow cyst formation and growth. He also takes a diuretic and a second BP med to keep his pressure down, which also helps w/ cyst formation and growth and may help his kidney last longer. He tries to keep his diet low in phosphorus, potassium, sodium, and limits his protein. He has used Commit lozenges to cut his smoking down to about 10 cigs per day (down from 3 packs per day) w/ hopes he can soon quit completely.
After a dismal assessment by a general surgeon
, he had successful fistula surgery by a vascular surgeon on 1/26/06 -- very neat incision just above the wrist and healing well and purring like a kitten.
We are hoping his hand exercises will hasten development of his fistula and that it will be a few months before he starts dialysis.
We are hoping he can use a "Buttonhole" and a NxStage machine so he can go back to work (his work requires travel). The director of the DaVita clinic in Atlanta has made arrangements for him to start training within a week of being notified by his nephrologist that it is time to start dialysis. Atlanta is 2 hours away but there are no home hemo untis near here and no clinics using the NxStage at all.
We have both been self-employed for more than 25 years and we have not had insurance for more than 10 years -- as most people know, if you need it you then you can't afford it and/or get it.
I have found message boards to be much more informative than anyone in the medical community. In fact, information found online and advice from other posters has already been of more value than I can possibly describe. Every medical professional I have encountered in person, and most you'll find online, has said there is "no cure and no treatment for PKD" -- BUT when I have mentioned info I have gotten online, the neph has conceded that anecdotal evidence does show that measures can prolong the working life of the kidneys, but emphasizes that "there are no studies" which confirm the findings. Who in the hell do they think will pay for a study of bicarbonate of soda, which you can buy in any grocery store for less than a dollar?
In the 5 months since Mike started taking the bicarb his creatinine has stabilized around 4.1 - 4.3. In the previous 13 months it declined from 2.1 to 4.3.
After reading many posts here, I really look forward to learning from all of you
so when Mike's dialysis starts we will be as prepared as we can be.
Lorelle in SC
I Hate Dialysis Message Board
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