Vietnam Veterans with PKD

ATTENTION BLOG READERS.
PLEASE HELP US

Recently my blog was added to those of the pkdcure.com website. I've received the following letter from another Vietnam Veteran who has polycystic kidney disease as I do. One of my main intentions when I created the blog was to find and communicate with others about PKD and all veterans.

If you know someone who is a military veteran or who has PKD, please forward this blog post to them.


>> Bill,
>> I assume that your nephrologist was  referring to a spontaneous mutation
>> insofar as neither of your  parents were diagnosed with  PKD.
>> I am similarly situated;i.e. Neither of my parents were diaagnosed with
>> PKD
>> but I have it and I also served in Nam. Have you been in contact with
>> other
>> Nam vets  with PKD?  I would  suggest  in your next blog to  put  out a
>> feeler requesting similarly situated vets to come forward because  I
>> suspect
>> there are more of us out there. Possibly the  PKD foundation might  let
>> you
>> put this request on their main page.
>> I am a retired VA raating specialist. As you probably know 38 CFR 3.311b
>> concedes herbicide exposure if you served in Nixon's  playground. That's
>> the
>> good news. The  bad news is that ESRD is not  one of diseases for which
>> presumtive service connection can be granted. Therefore,  you need to
>> present  a medical opinion which states that it is more  likely  than not
>> that exposure to herbicides caused the spontaneous mutation resulting in
>> the
>> onset  of PKD.
>> Dr. Ted Steinman has mentioned spontaneous mutation at several PKD
>> meetings
>> but not in connection with a mutagen such as a herbicide. I am not aware
>> of
>> any study which  has addressed this  issue but  my  research has not been
>> exhaustive. Nor have I read any decisions of the Court of Appeals for
>> Veterans Claims in the last 6 years so I am a bit behind on regulatory
>> changes. Possibly  DAV has represented such a claim in front of BVA.
>> Obviously the more vets who are similarly situated who can compare notes
>> then the better off we are as group.
>> Let me  knnow  what you think.
>>
>> Al


> Al,
> Thanks for writing. Fighting the VA is a lonely struggle. I've asked
> my primary nephrologist, my nephrologist at Piedmont Transplant in
> Atlanta, my VA nephrologist also in Atlanta. Some don't offer an
> answer. The VA doctor said "You probably were born with one defective
> gene, and something "kicked off" the other gene, but I can't tell you
> what it kicked it off.
> If we live that long, I expect that all genetic diseases will be
> presumptive due to environmental conditions in maybe five or ten
> years.  I understand the entire study of chromosone 19 has been
> completed, but not 16 or 4.
> In my VA claim I asked that the environment exposures in Army service
> be considered: Agent Orange, Ionizing Radiation, and the combination
> of the two.
> I have other conditions in addition to PKD that are genetic, and none
> of them run in my family: cholesclerosis, pituitary tumor,
> otosclerosis, hypertension, polycystic liver.  Of course hypertension
> and kidney disease lead to cardiac problems. I've had one heart
> attack, a triple bypass, three strokes which mainly affect my language
> skills.
> I just got out of the hospital after a 10 day stay for cholangitis
> (bile duct infection) which has hit me several times since the
> original case in 1993.
> I continue to work at a small weekly newspaper. For the past 10 years
> I've been paying one-third to one-half of my total income for medical
> insurance, deductibles, and uninsured medical charges.
> I'm glad to hear from other veterans with PKD.
> I plan to post my reply to you on my blog.
> I got sick soon after my blog was added to the PKD.CURE list, and I've
> compiled some information from the internet that I plan to share, but
> I will need to edit it first.
> Your information is quite helpful.  Since my strokes I'm unable to
> handle large amounts of information, and I have to attack everything
> simply, and that takes lots of time.
> I would like to post your letter on my blog, if that's okay. I can
> omit your name if you like. Please let me know.
>Bill



>Bill,

I corrected several misspellings in my correspondence which illustrates why
you should never write emails when both eyes don't focus in the same
direction. Go ahead and use the corrected correspondence in your blog. I am
not surprised at the answers which you got from your nephrologists. PKD is
one subset within the larger universe of kidney disease, albeit, a major one
and spontaneous mutations are a much smaller subset within a subset.
Unlless a doctor specializes in  PKD it is likely that he may not be aware
of  all the current  research.
My purpose here is to see if we can find a group of hopefully 20 or more VN
vets with the condition to form the basis of a study  group which might have
the benefit of helping all of us with s/c claims  for the condition.

Later,
Al

Posted by Bill Ricks of Soperton