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0 -1.2 TD
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)]TJ
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)]TJ
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P)23(ater)-18(nity issues need to be addressed in
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[(y)116(, the minimum)]TJ
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PKD genes been isolated, but mutation-detection)Tj
0 -1.19999 TD
-0.0151 Tc
(strategies have been developed that work for PKD1, PKD2 and ARPKD (PKHD)
as well. The accuracy of the mutation-)Tj
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(detection strategies differ between the two ADPKD gene types, with
mutation-detection strategies being the most)Tj
T*
-0.015 Tc
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[(accurate in PKD2 individuals. Close to a 90% mutation-detection rate
is obser)-18(ved in PKD2. In PKD1, mutations are)]TJ
0 -1.19999 TD
0.0251 Tw
(successfully identified in approximately 65-70%. The lower success rate
in PKD1 is because the gene is larger and more)Tj
0 -1.2 TD
0.025 Tw
[(difficult to analyze, given the long polypyrimidine tract.
Additionally)116(, pieces of the gene so similar to PKD1 lie nearby
on)]TJ
0.0251 Tw
(the same chromosome that it is difficult to separate the pieces from the
PKD1 gene. The ARPKD gene has been identified)'
0 -1.19999 TD
0.025 Tw
[(in 2002 and mutations found; however)56(, it is too early to tell the
best way to screen all individuals for mutations in ARPKD)]TJ
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(and the success rate of mutation detection.)Tj
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[(W)18(ould the diagnosis \322medullary sponge kidney\323 be the same as
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(kidney disease?)Tj
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[(Medullar)-18(y sponge kidney is common and occurs in 1:100 to 1:200
individuals. The diagnosis is only a radiological one. It)]TJ
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[(is characterized by the presence of dilated or enlarged collecting
tubules in the medulla or middle of the kidney)117(. This)]TJ
T*
[(occurs in many unrelated kidney disorders and has been repor)-18(ted to
occur in ADPKD. The cause of medullar)-18(y sponge)]TJ
0 -1.19999 TD
[(kidney is not entirely understood but in ADPKD is probably secondar)18(y to the distor)-18(tion of the collecting system by the)]TJ
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[(presence of cysts in that area of the kidney)116(. Medullar)-18(y
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T*
[(from alterations in urinar)-18(y flow and may)116(, in par)-18(t,
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(25%\) in ADPKD individuals. )Tj
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[(I am a 36-year)55(-old woman, diagnosed with PKD at age 22. Except for
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[(sur)18(e and a full abdomen, I have no symptoms. Neither of my
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[(both wer)18(e tested. No other r)17(elatives have PKD. I assumed that
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[(ou may or may not have autosomal recessive polycystic kidney disease
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(somal dominant polycystic kidney disease (ADPKD) that is due to a
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T*
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[(ARPKD can be serious and life-threatening and include bleeding from the
stomach and infection in the liver)56(. The best)]TJ
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[(non-invasive way to tell if you have ARPKD is to undergo a magnetic
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(In most centers, ultrasound (sonography) is sensitive enough to detect
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0 -1.19999 TD
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[(differs in different races. It has been suggested the disease severity
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[(compared to their Caucasian counterpar)-18(ts. However)56(, the data
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that A)19(frican American patients with ADPKD are diag-)]TJ
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[(nosed with hyper)-18(tension an earlier age than their Caucasian
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[(suggesting worse disease. However)56(, creatinine levels are greater
in A)19(frican Americans with the same level of renal func-)]TJ
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[(tion as Caucasians. Cur)-18(rently)116(, it is difficult to say if
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(Why do people in the same family vary in the intensity and
manifestations of PKD?)Tj
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[(This question has not yet been answered fully)116(. There are a number
of explanations, however)56(. It is now known that the)]TJ
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[(cysts in patients with ADPKD not only have an inherited PKD1 or PKD2
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[(tion in the PKD1 or PKD2 gene inherited from the unaffected parent. In
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(place. This suggests that cysts in ADPKD kidneys and livers not only
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(the non-inherited PKD gene. Given that the second hit, or somatic
mutation, is a random event \(this could occur at age 1,)Tj
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(5, 15, 45, etc.\), this introduces a lot of variability into how a
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(pressure gene or a diabetes gene or a cancer gene may be in the same
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(together)Tj
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[(. F)19(inally)115(, environmental exposures are impor)-18(tant risk
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[(possible that toxic occupational exposures are impor)-18(tant risk
factors for progression of renal disease in ADPKD. These risks)]TJ
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[(have not been evaluated or established in the disease variability found
in ADPKD but are wor)-18(th considering.)]TJ
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(If PKD is such a common her)Tj
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(editary kidney disease, why is it that I have talked to only)Tj
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(hear)'
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(Good question! One of the mysteries of PKD is why so few have ever heard
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(than cystic fibrosis, sickle cell anemia and Down\325s syndrome,
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(oundation, which is to increase the awareness of PKD)Tj
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(among laypersons. )Tj
ET
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(I have PKD, but my sister does not have it. She is inter)Tj
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(ested in genetic counseling, and)Tj
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(her question is: Can PKD skip a generation? )Tj
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(If your sister is more than 25 years of age and does not have cysts in
the kidneys and/or the liver when examined by)Tj
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[(computed tomography scan (CT scan) with contrast enhancement, it is
most unlik)19(ely that she has PKD. There are no)]TJ
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(documented instances to our knowledge that PKD has skipped a generation.
In other words, if your sister does not have)Tj
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[(I understand that ther)18(e is a blood test for all family members of a
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T*
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[(potential donor)92(. Please pr)17(ovide mor)18(e information about the
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[(A test is commercially available that depends on the linkage of PKD to
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(This is called gene-linkage analysis. There are also mutation-detection
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0 -1.19999 TD
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[(infor)-18(mative, one must have one, and preferably)116(, two or more
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[(order to deter)-18(mine which asymptomatic subjects in the family have
the PKD gene. If you are interested in being tested,)]TJ
T*
[(you can contact the genetics depar)-18(tment of medical schools in your
area, or you can write to the National Center for)]TJ
T*
[(Education in Mater)-18(nal and Child Health, 3520 Prospect St.,
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[(pamphlet entitled \322Comprehensive Clinical Genetic Ser)-18(vices
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(My mother has polycystic kidneys, as does my sister)Tj
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(In view of the strong family histor)Tj
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(y and the evidence of cysts in the liver and one kidney)Tj
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(, there seems to be little doubt)Tj
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(that you have the hereditar)Tj
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(Do you believe that it is possible for me to be the only child of nine
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[(In each child of an affected parent, autosomal dominant polycystic
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[(pennies. Occasionally three, four)56(, or five or more heads will
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(ence with polycystic kidney disease. In your case, it is a low
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T*
0.025 Tw
[(children who has the disease, but not an impossibility)116(. W)79(e
have communicated with other families in which nearly all of)]TJ
0.0251 Tw
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0 -1.19999 TD
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[(families have always confir)-18(med the 50/50 ratio. )]TJ
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[(Though the gene of polycystic kidney disease is autosomal dominant,
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(sionally incomplete penetrance?)Tj
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(In dominantly inherited diseases, 50 percent of the offspring of an
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(disease is dominant, then it should be seen in all patients who have the
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(per)'
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(for)Tj
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(ming radiographic studies on all patients at risk for PKD whether they
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(has been clearly shown to be an autosomal dominant condition.
Incomplete penetrance is a ter)Tj
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(m used to describe a)Tj
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0.025 Tw
[(genetic disorder that does not always show up in ever)-18(y sequential
generation of a family)116(. Incompletely penetrant genes)]TJ
T*
[(cause the par)-18(ticular disease to \322skip\323 generations. ADPKD
appears to \322skip\323 generations in some families, but incomplete)]TJ
0.0251 Tw
(penetrance is not the reason why)'
13.62413 0.00001 TD
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(. If sensitive radiographic tests are not per)Tj
17.51439 0.00001 TD
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[(for)-18(med, some subjects who have the ADPKD)]TJ
-31.1385 -1.2 TD
[(gene and a mild for)-18(m of the disease may never become aware that
they have it. They can, however)56(, pass the gene on to)]TJ
T*
[(their offspring, and it may resur)-18(face there. Thus, because ADPKD
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(Q&A on PKD)Tj
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[(Y)92(ou indicate in PKD updates that a milder form of PKD exists. I
would like to know if a)]TJ
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[(nephr)18(ologist can or)17(der a test to determine which form of PKD an
individual has?)]TJ
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(. )Tj
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T*
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(I am a patient with PKD, and I have had a kidney transplant. I also
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(I am a 48-year)Tj
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(There are many causes for vomiting that are not related to ADPKD.
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[(A few years ago at a Friends seminar)92(, a PKD r)17(esear)18(cher said
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0 -1.2 TD
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[(haven\325)18(t seen much about this in the PKD Foundation
literatur)17(e. Did I misunderstand what)]TJ
T*
[(I hear)18(d?)]TJ
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[(No, you heard this cor)-18(rectly)116(. The role of the PKD genes is
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[(ADPKD. In suppor)-18(t of this, inguinal and ventral her)-18(nias,
which are disorders of connective tissue, have been found with)]TJ
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(increased frequency in ADPKD individuals.)'
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[(I am 50 years old and have polycystic kidney disease. For some time
now)55(, I have been)]TJ
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(complaining of continuous ringing in the ears. My physician has made a
diagnosis of)Tj
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(tinnitus. Can this be a manifestation of an intracranial aneurysm?)Tj
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[(T)51(innitus is usually not associated with intracranial aneur)18(ysms. The causes of tinnitus are local and in the area of the
audi)1(-)]TJ
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[(tor)-18(y canals next to the ears. T)167(ypically)116(, the symptoms
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aneur)-18(ysms that are symptomatic can present in many)]TJ
T*
[(different fashions, and so one cannot r)-18(ule out with cer)-18(tainty
that tinnitus is not related. The way to mak)19(e sure that an)]TJ
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(Is a brain cyst part of autosomal dominant polycystic kidney disease?)Tj
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[(Cysts have been repor)-18(ted in the brain with increased frequency in
polycystic kidney disease patients \(usually in 3-5% of)]TJ
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(patients\). These cysts are usually in the pineal region, are
incidental findings and do not cause trouble to patients. The)Tj
T*
0.025 Tw
[(protein polycystin, which is produced by the ADPKD gene, is found in
ver)-18(y high concentrations in the brains of patients)]TJ
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[(with ADPKD. Whether this accounts for the cysts found in the brains of
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[(My mother and her br)18(other had PKD, and both had ruptur)17(ed brain
artery aneurysms in)]TJ
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(rent estimates indicate that, in the absence of any symptoms, the risk
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(, if there is a family histor)Tj
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0.025 Tw
[(y of aneur)-18(ysm, screening by angio magnetic)]TJ
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(\(blur)Tj
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(red vision, dizziness, severe headache\) should consult their
physician.)Tj
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(Can you please tell us symptoms of aneurysms of the brain and
abdomen?)Tj
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[(Aneur)-18(ysms (ballooning) of brain blood vessels will occasionally
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[(repor)-18(ted eye disturbances, nausea, vomiting, and stiff neck.
F)42(or)-18(tunately)116(, aneur)-18(ysm of the brain vessels is
relatively)]TJ
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[(uncommon. The aneur)-18(ysms tend to occur within families of patients
who have polycystic kidney disease. W)79(e all have)]TJ
0 -1.2 TD
0.0251 Tw
(headaches from time to time, so longstanding \322nagging\323 headache
should not be a wor)Tj
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(r)Tj
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(y to patients with polycystic)Tj
-36.28519 -1.20001 TD
(kidney disease. On the other hand, a PKD patient with a new type of
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0 -1.2 TD
0.025 Tw
[(attention. Aneur)-18(ysms in the abdominal blood vessels usually occur
in the aor)-18(ta, the major blood vessel r)-18(unning through)]TJ
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[(the body just in front of the spinal column. P)24(atients will
occasionally notice an \322extra hear)-19(tbeat\323 in the upper
abdomen)]TJ
0 -1.2 TD
[(when an aneur)-18(ysm is present. These types of aneur)-18(ysms can
also cause pain in the abdomen of a nonspecific nature. It is)]TJ
T*
[(relatively easy to check for abdominal aneur)-18(ysm with a sonogram
test to exclude this as a cause for abdominal pain. )]TJ
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[(I am a PKD patient on dialysis. T)111(wo weeks befor)17(e my kidneys
failed, I had a str)18(oke. The)]TJ
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[(CT scan showed an intracer)18(ebral (brain) hemorrhage but no aneurysm.
I know about PKD)]TJ
0 -1.2 TD
[(and cer)18(ebral aneurysms, but I wonder if ther)17(e is a connection
between PKD and intracer)18(e-)]TJ
-0.0001 Tc
0.0278 Tw
(bral vessel weakness?)'
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[(Individuals with high blood pressure, whether they have PKD or not,
have a higher incidence of intracerebral hemor)-18(rhage)]TJ
0 -1.2 TD
0.0251 Tw
(than those who do not have elevated blood pressure. Since more than onehalf of polycystic kidney patients have elevated)Tj
T*
0.025 Tw
[(blood pressure, there may be an increased incidence of strok)19(e due
to intracerebral hemor)-18(rhage that is not related to)]TJ
T*
[(aneur)-18(ysm for)-18(mation. There is no infor)-18(mation to indicate
that the blood vessels of polycystic kidney patients are inher-)]TJ
T*
[(ently weak)19(er than nor)-19(mal. Thus, intracerebral hemor)-18(rhage
in a PKD patient with nor)-18(mal blood pressure should raise the)]TJ
T*
[(question of an occult cerebral aneur)-18(ysm. )]TJ
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(16 )Tj
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(Q&A on PKD)Tj
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/F6 1 Tf
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( )Tj
/F6 1 Tf
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( )Tj
/F7 1 Tf
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(Once an aneurysm has been found, how successful is surgical
intervention?)Tj
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[(Not all intracranial aneur)-18(ysms require surger)-18(y)116(. While
aneur)-19(ysms causing symptoms should be treated immediately)117(,
the)]TJ
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[(recommendation for surger)-18(y in the case of incidental, asymptomatic
aneur)-18(ysms will depend on the estimated risk of)]TJ
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[(upture if lef)-18(t untreated and the risk of surger)-18(y)116(. These
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[(aneur)-18(ysms, the age of the patient, and the exper)-18(tise of the
neurosurgeon. In good hands, the average incidental intracra-)]TJ
T*
[(nial aneur)-18(ysm can be repaired with a less-than 5 percent risk of
dying or having major complications.
)]TJ
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[(W)18(e have hear)18(d of patients with PKD who have ruptur)17(ed
cer)18(ebral aneurysms. My husband)]TJ
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[(has PKD and is 65 years old and on dialysis. His sister died of a
ruptur)18(ed aneurysm at)]TJ
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[(age 32. W)18(e have thr)17(ee childr)18(en ages 24-33, and the oldest
has PKD. What if anything,)]TJ
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(should we do?)Tj
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[(It does not appear necessar)-18(y to look for aneur)-18(ysms in ever)18(y person with PKD, since it seems that aneur)-18(ysms are not ver)18(y)]TJ
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[(common in PKD. There has been a suggestion that aneur)-18(ysms may
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(Because of this, some doctors might suggest that only PKD patients in
such families, or PKD patients who would cause a)Tj
0 -1.19999 TD
0.025 Tw
[(high risk to others if an aneur)-18(ysm r)-18(uptured and they became
unconscious \(lik)19(e an airplane pilot\), should be studied for)]TJ
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[(aneur)-18(ysms. Ruptured aneur)-18(ysms don\325t seem to happen ver)18(y of)-18(ten in PKD patients on dialysis. The tests available to
look)]TJ
T*
[(for aneur)-18(ysms include ar)-18(teriography)116(, computed
tomography)116(, and the new technique of magnetic resonance
angiography)116(.)]TJ
0.0251 Tw
(This last test appears to be the easiest and the best.)'
ET
BT
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[(My 38-year)55(-old sister has been diagnosed as having two fluid-filled
arachnoid cysts in the)]TJ
0 -1.19999 TD
[(lining of the brain. A CT scan and MRI wer)18(e used to confirm the
diagnosis. The doctors)]TJ
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[(don\325)18(t know if these cysts ar)17(e associated with PKD. Do you
have any information about this?)]TJ
ET
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[(Arachnoid cysts have indeed been detected by CT scan in several
patients with polycystic kidney disease. V)79(er)-18(y little is)]TJ
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(known about how these cysts in the brain may affect patients. In the
experience of a few nephrologists, these cysts have)Tj
T*
0.025 Tw
[(been asymptomatic, and no treatment was recommended. There is ver)18(y little experience in the management of these)]TJ
0 -1.19999 TD
0.0251 Tw
(cysts. Should a patient develop symptoms that neurologists and
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(vention may be indicated.)Tj
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[(I am a 39-year)55(-old man with polycystic kidney disease. My father
and two br)17(others, also)]TJ
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(with PKD, had heart attacks befor)Tj
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(e the age of 50. Is ther)Tj
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(e any r)Tj
3.14981 0 TD
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(elation between PKD and)Tj
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[(an incr)18(eased risk for heart attacks? What can I do to r)17(educe
my risk?)]TJ
ET
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(The most common cause of death in all patients with renal failure,
including ADPKD, is cardiovascular death. This is most)Tj
0 -1.19999 TD
0.025 Tw
[(l)1(i)1(k)19(ely due to a combination of the presence of hyper)18(tension, the pro-inflammator)-18(y state of renal insufficiency)116(,
and abnor-)]TJ
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[(malities in lipid metabolism found in patients with all types of renal
disease. Hyper)-18(tension occurs early in ADPKD, prior to)]TJ
0.0251 Tw
(the loss of renal function. It occurs, on average, a decade earlier
than the hyper)'
32.88464 0.00001 TD
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(tension found in the general population.)Tj
-32.88464 -1.2 TD
-0.015 Tc
0.025 Tw
[(Hyper)-18(tension is an impor)-18(tant risk factor for the progression
of renal disease in ADPKD and is associated with the pres-)]TJ
T*
[(ence of lef)-18(t ventricular hyper)-18(trophy)116(, which is an
independent risk factor for cardiovascular death. Aggressive control
of)]TJ
T*
[(hyper)-18(tension in ADPKD is helpful in reversing the presence of
lef)-18(t ventricular hyper)-18(trophy)116(, par)-18(ticularly with the
use of)]TJ
-0.0149 Tc
(angiotensin-conver)'
7.83918 0.00001 TD
-0.015 Tc
0.0251 Tw
(ting enzyme inhibitors. One way to reduce cardiovascular risk if you
have ADPKD is to monitor your)Tj
-7.83918 -1.19999 TD
0.025 Tw
[(blood pressure closely)116(, and, if you have high blood pressure
needing treatment, to have a blood pressure goal of less than)]TJ
0 -1.2 TD
[(125/75 mm Hg. This monitoring will help prevent organ damage \(lef)18(t ventricular hyper)-18(trophy\) related to hyper)-18(tension)]TJ
0.0251 Tw
(and probably reduce the rate of progressive loss of renal function in
ADPKD. If these goals are met, your cardiovascular)'
T*
0.025 Tw
[(risk will decline significantly)116(.)]TJ
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(Q&A on PKD)Tj
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( )Tj
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[(What happens to the adr)18(enal glands, which sit on top of the
kidneys, when the kidneys)]TJ
0 -1.2 TD
[(become enlarged in PKD? Do the kidneys push on the glands and make
them excr)18(ete)]TJ
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0 Tw
[(adr)18(enaline?)]TJ
ET
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(The adrenal glands do not appear large when viewed by computed
tomography in ADPKD. Although they rest on top of)Tj
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[(the kidneys, the cystic expansion of the polycystic kidney does not
inter)-18(fere with the adrenal gland. However)56(, of interest,)]TJ
0 -1.2 TD
[(one of the hor)-18(mones, aldosterone, made in excess quantities,
results in high blood pressure and protein in the urine.)]TJ
0.0251 Tw
(Some, but not all, studies suggest that aldosterone levels may be
elevated in ADPKD patients. )'
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[(I have PKD, and my cysts ar)18(e small. The only pr)17(oblem I have
associated with my disease)]TJ
0 -1.19999 TD
[(is high blood pr)18(essur)17(e. I take Benazepril (10 mg) for high
blood pr)18(essur)18(e. I want to quit)]TJ
0 -1.2 TD
[(smoking, but can I take Zyban \(bupr)18(opion\) to help me stop
smoking?)]TJ
ET
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[(There is no contraindication to taking Benazepril and Zyban
together)56(. In addition, Zyban is not contraindicated in)]TJ
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[(patients with polycystic kidney disease. High doses of Zyban can
increase blood pressure, so it is impor)-18(tant to mak)19(e sure)]TJ
T*
[(that your doctor is involved as you use this medication. Most impor)18(tantly)116(, the health benefits of quitting smoking far)]TJ
0 -1.19999 TD
[(outweigh the risks of polycystic kidney disease in someone lik)19(e
yourself)37(, where the disease appears to be ver)-18(y mild.)]TJ
ET
BT
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[(I am in the military)92(, am 41 years old, and have PKD. I am taking
Benazepril for high blood)]TJ
0 -1.19999 TD
-0.0003 Tc
(pr)Tj
0.94482 0 TD
-0.0002 Tc
(essur)Tj
2.50147 0 TD
0 Tc
[(e. I am also taking the Depo-Pr)18(overa shot for birth contr)17(ol.
My doctor has told)]TJ
-3.44629 -1.2 TD
[(me that I should stop taking the shot, because it may raise blood
pr)18(essur)17(e. I do not plan)]TJ
0 -1.19999 TD
[(on having childr)18(en, and he suggests that I have a tubal ligation
since I don\325)17(t want any)]TJ
0 -1.2 TD
-0.0002 Tc
0.0278 Tw
(other birth-contr)Tj
7.60152 0 TD
-0.0001 Tc
(ol method. Does the Depo-Pr)Tj
13.89918 0 TD
-0.0002 Tc
(overa shot incr)Tj
6.90957 0 TD
0 Tc
0.028 Tw
[(ease blood pr)18(essur)17(e? Will)]TJ
-28.41026 -1.20001 TD
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(having the tubal ligation interfer)Tj
14.68731 0 TD
(e with my PKD?)Tj
ET
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[(Depo-Provera has been repor)-18(ted to be associated with increases in
blood pressure as well as edema and swelling.)]TJ
0 -1.2 TD
[(However)56(, high blood pressure is a relatively uncommon side effect
of Depo-Provera. Depo-Provera is a long-acting prog-)]TJ
0 -1.19999 TD
0.0251 Tw
(esterone that suppresses ovulation. The advantage of Depo-Provera is
that one does not have to remember to tak)Tj
47.02005 0 TD
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(e a pill)Tj
-47.02005 -1.2 TD
-0.015 Tc
0.025 Tw
[(ever)-18(y day)116(. The other choices for bir)-18(th control include
diaphragm and sper)-18(micidal jelly)116(, daily bir)-19(th control pill
use or tubal)]TJ
T*
[(ligation. T)139(ubal ligation has no special effect on women with
ADPKD. )]TJ
ET
BT
/F0 1 Tf
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0 Tc
0.028 Tw
[(Recently)92(, I spent some time at a natural health farm. My blood
pr)17(essur)18(e was up, my)]TJ
0 -1.2 TD
[(weight was up, and I felt terrible. I fasted on juices, raw vegetables
and fruit, and water)92(. I)]TJ
0 -1.19999 TD
[(was able to keep my pr)18(essur)17(e at a normal level while I was
ther)18(e, without medication. I)]TJ
0 -1.2 TD
[(would like to r)18(etur)-18(n to the health farm for a water fast.
Since I have polycystic kidneys, is)]TJ
0 -1.19999 TD
[(ther)18(e any harm involved? When I r)17(etur)-18(ned in October after
a 10-day stay)92(, I had a blood)]TJ
0 -1.2 TD
[(pr)17(essur)18(e test, which tur)-18(ned out to be the best of all
tests in the past 9 or 10 years.)]TJ
ET
BT
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[(W)79(e are what we eat. Y)116(ou provide a good example of what the
National Institutes of Health and the Hear)-18(t Lung and Blood)]TJ
0 -1.2 TD
0.0251 Tw
(Institute and the National Education Program for High Blood Pressure
recommend for the initial treatment of high blood)Tj
(pressure: DIET AND LIFESTYLE MODIFICA)'
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[(My blood pr)18(essur)17(e is 145/100, and my doctor has r)18(ecommended
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[(this has come from the patient\325s kidney)116(. )]TJ
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[(rent kidney infections usually mean that one or more cysts have been
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[(blindly)116(. W)79(e have known several patients who required
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[(ted by the PKD F)42(oundation has led to the discover)-18(y of two dr)18(ugs that may be helpful in some patients)]TJ
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(with recur)Tj
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[(have sur)-18(faced. )]TJ
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[(mark)18(edly)116(.)]TJ
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T*
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[(F)42(or people with kidney disease of any type, it is impor)-18(tant to
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T*
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T*
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)Tj
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[(P)23(atients who are on hemodialysis typically dialyze three times a
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the work of the kidneys that usually tak)19(es place 24 hours a)]TJ
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[(day)116(, 7 days a week. Because of the massive changes in blood
chemistries and the volume of fluid that is removed during)]TJ
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or)]TJ
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-30.41955 -1.20001 TD
0.025 Tw
[(renal failure patients experience. Er)-18(ythropoietin is now given to
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0.0251 Tw
(tation to cor)Tj
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ET
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[(glands work extra to tr)-18(y and bring the low calcium levels back to
the nor)-18(mal range. Even though calcium levels improve,)]TJ
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sk)19(eleton, and deposits of cr)-18(ystallized calcium into sof)-19(t
tissues of the)]TJ
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[(body)116(. The best way to cor)-18(rect this process is to maintain
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T*
[(restricting the amount of phosphor)-18(us in the diet (see DIET) as
well as by supplementing vitamin D sources that help)]TJ
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[(cians know immediately so that these potential complications can be
investigated fur)-18(ther)56(.
)]TJ
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[(P)42(eritoneal dialysis can be resumed af)-18(ter severe peritonitis.
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T*
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P)42(olycystic kidney patients do not seem to be singled out in)]TJ
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ET
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[(of these things are beyond control. Individuals should not allow
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[(er)-18(y impor)-18(tantly)116(, it helps to adhere to the fluidmanagement)]TJ
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(plan between dialysis treatments to avoid gaining a great deal of fluid
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0 Tc
(-)Tj
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(t. )Tj
ET
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(I am a PKD dialysis patient. I have incessant nausea, which my doctor
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[(P)23(atients on dialysis may have nausea for a variety of reasons, such
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mark)19(edly enlarged polycystic kidney or liver can press on)]TJ
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T*
[(during dialysis and may be associated with nausea. W)19(ithout having
a better idea about the cause of your nausea, we)]TJ
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(antinauseant medications are prescribed. )Tj
ET
BT
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[(How do polycystic kidney disease patients do on various forms of
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ET
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[(ADPKD patients tend to do better on dialysis than other patients with
other kidney diseases. F)42(or example, patients with)]TJ
0 -1.2 TD
[(diabetes do not sur)-18(vive as long on dialysis as patients with
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T*
[(whether they are receiving hemodialysis, peritoneal dialysis or a
transplant, is cardiovascular or cerebrovascular)56(. Even)]TJ
T*
[(though ADPKD patients do better than other types of patients on
dialysis, their sur)-18(vival is improved with a kidney trans)1(-)]TJ
T*
[(plant. There are complications in dialysis that are specific to ADPKD
patients. Impor)-18(tantly)116(, as ADPKD individuals sur)-18(vive)]TJ
T*
[(longer)56(, complications of liver cystic disease become more common.
Complications include liver cyst hemor)-18(rhage, liver)]TJ
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individuals who undergo peritoneal dialysis, the development)]TJ
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[(of inguinal or ventral her)-18(nias becomes more common. If the
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(undergo peritoneal dialysis. )'
0 -2.39999 TD
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[(ADPKD patients tolerate transplantation ver)-18(y well. The
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common in ADPKD patients.)Tj
ET
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(Will polycystic kidney disease attack a newly transplanted kidney)Tj
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(, and what is the survival)Tj
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(rate of transplants in patients with polycystic kidney disease?)Tj
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[(There is no evidence that polycystic kidney disease occurs in a
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(transplantation in patients with polycystic kidney disease are similar
to all other patients undergoing transplantation. In)Tj
0 -1.2 TD
(fact, 80 percent to 85 percent of kidney recipients can expect a oneyear sur)Tj
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(. )Tj
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(Should a cadaver kidney transplant be performed in a patient with ADPKD
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(need for dialysis?)Tj
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[(T)135(ransplantation with kidneys from recently deceased, unrelated
persons is frequently per)-18(for)-18(med on PKD patients and is as)]TJ
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[(successful or more successful than cadaveric transplants in general.
Many transplant centers do not lik)19(e to per)-18(for)-18(m trans-)]TJ
0 -1.2 TD
0.0251 Tw
(plants or put patients on the cadaveric transplant waiting list until
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(dialysis. This policy has multiple reasons, not the least of which is
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-30.84729 -1.19999 TD
0.025 Tw
[(are already waiting on dialysis. Also, it is of)-18(ten a good idea to
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(rate of cadaver organs. )'
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0.025 Tw
[(W)79(e do not know how the abnor)-18(mal gene on chromosome 16 causes
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[(disease, but if polycystic kidney disease is caused by an abnor)-18(mal
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(would for)Tj
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(m in a kidney transplanted from a non-related person. The experience of
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0 -1.2 TD
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(who do not have polycystic kidney disease. This \322experiment in
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T*
0.025 Tw
[(recur in a non-related transplanted kidney and that polycystic kidney
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0.0251 Tw
(circulating in the blood. )Tj
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[(A patient with advanced polycystic kidney disease r)18(equir)17(es a
kidney transplant. Her 39-)]TJ
0 -1.2 TD
[(year)55(-old sister has only two small cysts in the liver and none in
the kidney \(shown by)]TJ
T*
[(contrast-enhanced CT\). W)18(ould she be an acceptable donor of a
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ET
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[(This is a difficult question. It is most common to find kidney cysts
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[(although infrequently)116(, in the general population. If this
individual\325s liver cysts were numerous and large, one would be)]TJ
T*
[(hesitant to recommend that she donate a kidney)116(. If this family
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[(by gene-linkage analysis that would be the first step to tr)-18(y)116(.
If gene testing is not a possibility)116(, one could look for other)]TJ
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[(mark)18(ers of PKD in the potential donor)-36(\325s sister)56(, such as
inability of the sister to concentrate her urine when she does not)]TJ
0 -1.2 TD
[(have access to water)56(, looking for other extra-renal signs of PKD
such as mitral valve prolapse and the presence of hyper-)]TJ
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0.0251 Tw
(tension. If the sister who is a potential donor has high blood
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0 -1.2 TD
0.025 Tw
[(prolapse, that would increase the lik)19(elihood that she has the gene
and mak)18(es her a less-lik)19(ely donor)56(.
)]TJ
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(My dad has PKD, and I also have the disease. I am the only child of
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0 -1.2 TD
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[(diagnosed as having the disease. Can I have a kidney fr)18(om one of
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(if needed?)Tj
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[(Each of your sisters and brothers has a 50/50 chance of having
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0.0251 Tw
(age will exhibit PKD when examined by computed tomography scanning (CT
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(contrast enhancement. This is the most sensitive diagnostic test we
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T*
0.025 Tw
[(a family with PKD, the genetic-linkage test can deter)-18(mine whether
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[(whether the X)74(-ray tests show positive. Unfor)-18(tunately)116(,
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(the United States.)Tj
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[(Do the immunosuppr)18(essive drugs used to tr)17(eat transplant
r)18(ejection, specifically pr)18(ed)-1(-)]TJ
0 -1.2 TD
[(nisone and cyclosporine, have any ef)18(fect on the underlying
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ET
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(Prednisone and cyclosporine both increase blood pressure. Increased
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(. Impor)Tj
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0.025 Tw
[(tantly)116(, cyclosporine is toxic to the kidney when given in too
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0.0251 Tw
(renal failure if excessive dosing is prolonged. In ADPKD individuals,
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0 -1.2 TD
-0.015 Tc
0.025 Tw
[(However)56(, there have been repor)-18(ts of rapid growth of the
polycystic kidney post-transplantation. )]TJ
0 -2.39999 TD
[(R)-18(arely)115(, ADPKD individuals with intact kidney function will
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(tion. Prednisone and cyclosporine \(or cyclosporine-lik)'
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[(transplants such as the liver or hear)-18(t. This could hypothetically
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T*
[(Prednisone will increase blood pressure by increasing the kidney)36(\325s avidity for salt as well as increasing appetite and)]TJ
0.0251 Tw
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T*
0.025 Tw
[(increases blood pressure. Increased blood pressure is associated with
disease progression in ADPKD. In the experi)1(-)]TJ
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(mental animal models of ADPKD, prednisone therapy has been associated
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T*
0.025 Tw
[(In humans this has not been repor)-18(ted. )]TJ
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[(If a PKD patient had cancer)92(, underwent tr)17(eatment and was
cancer)55(-fr)18(ee for two years,)]TJ
0 -1.2 TD
[(would this eliminate the patients fr)18(om being a transplant candidate
due to the use of anti-)]TJ
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[(r)18(ejection drugs?)]TJ
ET
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[(The reason for the required time delay af)-18(ter treatment for cancer
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0.0251 Tw
(suppressive medicines used to prevent the transplant kidney from being
rejected allow cancer cells to multiply more)Tj
0 -1.2 TD
0.025 Tw
[(rapidly and for cancer to grow and spread more quickly)116(. It is
ver)-18(y impor)-18(tant to mak)19(e sure that there is no cancer in
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T*
[(body prior to receiving an organ transplant that requires
immunosuppressive therapy)117(. The required cancer)37(-free time
prior)]TJ
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0.0251 Tw
(to being eligible for a kidney transplant is the same for someone with
ADPKD as it is with any other renal disease.)Tj
0 -1.2 TD
0.025 Tw
[(Depending on the type of cancer)56(, the minimum time required prior to
being eligible for transplantation is two years. F)42(or)]TJ
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[(example, for a successfully treated case of lymphoma, 2 years is the
minimum time required. Renal cell cancer sur)-18(vivors)]TJ
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[(require 4-5 years prior to being eligible, those with colon cancer 5-10
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[(noma can be considered eligible almost immediately af)-18(ter removal;
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T*
[(invasion or the stage of disease, requires 10 years prior to
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(transplantation centers. )'
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[(While r)18(enal transplantation has become a highly successful
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(number of persons waiting and the time they have to wait for a kidney
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-0.0001 Tc
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(surgeons to being able to use pig kidneys for transplantation?)'
ET
BT
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[(T)135(ransplanting an organ from one species to another is called xenotransplantation. There are body components used)]TJ
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0.0251 Tw
(from other species that are implanted into humans; for example, pig or
porcine valves are placed in the hear)Tj
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0.025 Tw
[(replacement procedures, and brain cells from pigs are injected into the
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(disease. A)Tj
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(t the present, there is no immediate plan for the use of other
specie\325s kidneys for transplantation into humans. )Tj
ET
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(I am looking for help and information concer)Tj
20.64078 0 TD
(ning a kidney transplant in the case of an)Tj
-20.64078 -1.2 TD
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[(antithr)18(ombin-3 deficiency)91(. At first, my doctor gave me all the
indications that a transplant)]TJ
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-27.33508 -1.2 TD
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[(Antithrombin-3 deficiency is a condition that leads to clotting of the
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0 -1.2 TD
[(clotting from occur)-18(ring that mak)18(e any type of surger)-18(y
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0 -1.19999 TD
[(planting a kidney in someone with this deficiency)116(, as long as the
surgeons can prepare properly for the procedure.)]TJ
0 -1.2 TD
[(Kidney transplantation is not a curative procedure for this illness,
however)56(. )]TJ
ET
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(Is it possible to be placed on multiple cadaver transplant lists in
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0 -1.2 TD
[(tions? If a kidney came up at a site r)18(emote fr)17(om the patient,
would the patient go to the)]TJ
0 -1.19999 TD
[(kidney)92(, or the kidney come to the patient?)]TJ
ET
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[(Most of)-18(ten the patient, goes to the kidney)116(. There are
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which)]TJ
0 -1.19999 TD
[(center the kidney should go to. However)56(, it is still required to go
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0 -1.2 TD
0.0251 Tw
(multiple transplant lists in several geographical locations to improve
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T*
0.025 Tw
[(transplant center has its own r)-18(ules with regard to the maximum
distance away that a patient can be. This is based on the)]TJ
-0.0201 Tc
0.0251 Tw
(time that it tak)'
5.9253 0 TD
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-5.9253 -1.2 TD
-0.0201 Tc
(time allowed from the center is seven hours. The longer that a kidney
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48.06184 0.00001 TD
-0.02 Tc
(ely it)Tj
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(is that there will be a longer phase of non-function at the time of
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ET
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(Q&A on PKD)Tj
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[(Diet, Drugs, Surgery)92(, Exer)17(cise)]TJ
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[(Some herbs ar)18(e said to be danger)17(ous to patients with PKD. Can
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(herbs and other substances used as foods that might be harmful to
polycystic kidneys?)Tj
ET
BT
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(Slimming preparations can cause kidney damage, as can various compound
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0 -1.2 TD
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[(include toxic, non-steroidal, anti-inflammator)-18(y dr)-18(ugs. Some
slimming medications include water pills or diuretic-lik)19(e)]TJ
0 -1.19999 TD
[(substances. These can cause electrolyte abnor)-18(malities as well as
dehydration. Some slimming medications will drive the)]TJ
0 -1.2 TD
[(sympathetic ner)-18(vous system. These can be dangerous and should
only be tak)19(en under the super)-18(vision of a physician.)]TJ
T*
[(Licorice root in chronic use can cause sodium and water retention and
potassium loss, which can result in hyper)-18(tension,)]TJ
0 -1.19999 TD
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0.0251 Tw
(edema and hypokalemia. Chinese herbs such as aristolochic acid are
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0 -1.2 TD
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0.025 Tw
[(course to follow is to know the ingredients of anything you tak)19(e
medicinally and to clear the preparation with your )]TJ
(physician.)'
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BT
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[(What is the pr)18(oper diet for a patient with ADPKD to pr)17(event the
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[(r)18(enal failur)18(e?)]TJ
ET
BT
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9.17277 0 TD
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[(ted at an early stage of the disease has clearly shown to have a
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-9.17277 -1.19999 TD
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(ment and renal function in two animal models of polycystic kidney
disease: the Han:SPRD rats and the pcy mouse.)Tj
0 -1.2 TD
0.025 Tw
[(However)56(, the evidence for a protective effect in humans is less
convincing. The largest study)116(, Modification of Diet in Renal)]TJ
0.0251 Tw
(Disease or MDRD trial, showed that a diet containing 0.58 gm/kg/body
weight (bw) had no beneficial effect, as compared)'
(to 1.3 gm/kg/bw in 220 ADPKD patients with moderately advanced renal
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0 -1.19999 TD
0.025 Tw
[(result, however)56(, is not conclusive because of the shor)-18(t period
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0.0251 Tw
(already had moderately advanced renal insufficiency)Tj
21.30298 0 TD
(. Until more infor)Tj
7.43428 0 TD
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[(patients with ADPKD avoid protein in excess of the RD)37(A for nor)18(mal adults (0.8 gm/kg/bw). While protein intak)19(e should)]TJ
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[(not be greater than the 1 gm/kg/bw)111(, severe restriction with
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vegetables, and minerals are desirable. The D)37(ASH Diet \(Dietar)18(y)]TJ
T*
[(Approaches to Stop Hyper)-18(tension\) is cur)-18(rently being
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0.0251 Tw
(Institute of Health\) website.)Tj
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[(How much pr)18(otein does my body need? )]TJ
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(Most Americans eat much more protein than they need. Many Americans eat
2 or 3 times the protein that their body)Tj
0 -1.19999 TD
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[(needs to stay healthy)116(. Any excess protein from the diet is not
stored in the body lik)19(e other nutrients such as fat or carbo-)]TJ
0 -1.2 TD
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-0.0149 Tc
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(protein malnutrition var)'
9.89665 0.00001 TD
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(y between 0.45 to 0.6 gm/kg/bw)Tj
12.95967 0.00001 TD
0.025 Tw
[(.
The cur)-18(rent recommendation for dietar)-18(y protein intak)18(e
in the)]TJ
-22.85632 -1.20001 TD
[(general adult population is 0.8 gm/kg/bw)112(. The recommendation for
ADPKD patients is 0.6-0.8 gm protein/kg/bw)111(, which is)]TJ
0 -1.19999 TD
0.0251 Tw
(an appropriate goal for the general population. The recommendation for
children is much higher to allow for appropriate)Tj
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[(dietar)-18(y phosphor)-18(us. A cer)-18(tain amount of these minerals
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T*
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T*
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(early on. )'
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[(When I was first diagnosed with PKD, I was told not to eat licorice.
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((Belgium beers and anisette).)Tj
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[(I am a patient with a very mild case of PKD. I have no complications,
so far)92(, and the cysts)]TJ
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[(e discover)18(ed by accident. W)17(e live in a city with very har)18(d
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T*
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[(have negative long-term ef)18(fects? Is potassium an option to soften
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(Small amounts of sodium added in the sof)Tj
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(tened water probably are safe in your case if)Tj
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[(cystic kidney disease is ver)-18(y mild and your blood pressure is
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(patients with PKD. An excellent source of infor)'
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(mation related to your question is an ar)Tj
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(ticle published in Archives of)Tj
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[(Inter)-18(nal Medicine of 1997 (vol. 157, pages 218-222). The
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[(from that ar)-18(ticle.)]TJ
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[(W)79(ater sof)-18(tening is used to remove the \322hardness\323 in the
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(The main reasons for \322sof)Tj
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(for the undesirable calcium and magnesium, thereby increasing the sodium
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0 -1.19999 TD
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[(chloride is more commonly used\). In one study)116(, the sodium
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[(contains ver)-18(y little sodium, sof)-18(tened water may contain
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[(water)56(, the sodium contained in sof)-18(tened water may add up to a
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T*
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(While the increased intak)Tj
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[(e of sodium from sof)-18(tened water may be of little impor)-18(tance
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(. I\325ve never had)Tj
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The chocolate that you have been enjoying did nothing to damage
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)]TJ
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)]TJ
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T*
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their creatinine level. )]TJ
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[(avoided in ADPKD patients. Sometimes either non-steroidals or the
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[(d)-1(r)-19(ug for urinar)-18(y tract infections, will selectively
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)Tj
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[(While the low-protein diet study has failed to show clear benefit,
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[(Research is being conducted to find dr)-18(ugs that will slow the
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[(experimental animals, but there are no results to repor)-18(t. These
types of studies of)-18(ten tak)19(e several years to clearly
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[(ug may be wor)-18(thwhile. When one or more candidate dr)-18(ugs are
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T*
[(ising, but the use of these dr)-18(ugs in human beings is several years
in the future.
)]TJ
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(I have arthritis in my thumb joints, and my doctor advises me to take
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(Will aspirin hurt my polycystic kidneys?)Tj
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[(Acetaminophen or aspirin in usual doses for shor)-18(t-ter)-18(m
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[(use of combination analgesics can produce kidney damage, which would be
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[(Is ther)18(e any known ef)17(fect of lead exposur)18(e on a person with
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[(Lead exposure, par)-18(ticularly in childhood, can lead to kidney
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[(underlying abnor)-18(malities, obviously any lead-induced kidney damage
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T*
[(to lower the lead content of the body)116(. The possibility of lead
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(nephrology or occupational medicine. )Tj
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[(I\325ve hear)18(d that with lapar)17(oscopy)92(, a technique that
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[(organs thr)18(ough tiny incisions, kidneys can be r)17(emoved. How does
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[(of the tissue for r)18(esear)17(ch? Is ther)18(e any r)18(oom for the
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(ment of PKD?)Tj
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(Laparoscopy has been used on an experimental basis in the management of
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[(the P)42(olycystic Kidney Research F)42(oundation, investigators at
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(hundreds of cysts from the kidneys, but this treatment has not been
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[(I have been on dialysis four years and am doing well except for
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T*
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T*
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31.93081 0.00001 TD
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(The word \322nephros\323 means kidney in Greek. Hence, the pediatric
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[(The autosomal dominant (adult) type of PKD is present at bir)-18(th in
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[(but the degree to which the cysts are expressed varies greatly from
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[(My six-month-old daughter died of a virus that af)18(fected her heart.
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(The viral disease that your daughter had was a separate disease from the
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[((ARPKD). ARPKD results in death in early infancy in about 60 percent
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(ment by or during adolescence. One of the most common problems
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(I just lost my first baby to \322bilateral cystic r)Tj
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[(doctor told me that this type is not a genetic disor)18(der)91(, just a
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T*
[(r)18(eally forms of PKD that ar)18(en\325)17(t genetic or
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[(Unlik)18(e the genetically transmitted polycystic kidney diseases
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[(mations in other par)-18(ts of the body)116(. The bilateral cystic
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However)56(,)]TJ
T*
[(there are documented cases of familial recur)-18(rence of bilateral
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0.0251 Tw
(other urologic abnor)'
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