Previous PKD Surveys


Aug.'s PKD Survey
 

Does your kidney size cause you any problems?

  no, not really. (43)                                                                                  34%

  not yet but I worry about it. (26)                                                            21%

  yes, mainly physical problems like back pain, other pain,
  awkwardness, etc. (25)                                                                           20%

  yes, mainly it makes me self consious about how I look/makes it
  hard to find clothes that fit. (9)                                                              7%

  yes, it causes physical problems and makes me self consious
  about how I look. (15)                                                                             12%

  don't know. (5)                                                                                           4%

  Total: 123 votes.


July's PKD Survey

Do you have cysts on your liver as well as your kidneys?

         no, not that I know of. (43)                                                    32%

         I don't know. (14)                                                                  10%

         yes, but they don't cause any problems. (42)                       31%

         yes, but it's only a minor problem. (12)                                 9%

         yes, it's a moderate problem, (11)                                         8%

         yes, it's a major problem, (6)                                                 4%

         yes, it's more of a problem than my kidneys are. (4)           3%

         Total: 132 votes


June's PKD Survey

          What stage of PKD are you in?

           early stage - over 80% function (59)                44%

           mid stage - over 35% function (22)                  16%

           late stage - less than 35% function (16)           12%

           on dialysis - hemo (7)                                           5%

           on dialysis - PD (2)                                              1%

           have transplant (8)                                               6%

           don't know what kidney function is (18)            13%

           Total: 132 votes.


May's Pkd Survey

I'm curious to see if there's any link between cyst pain and infections. I've had...

     no cyst pain or kidney/cyst infection(s). (29)                      21%

     no cyst pain but have had kidney/cyst infection(s). (12)      8%

     cyst pain without kidney and/or cyst infection(s). (52)        38%

     cyst pain and kidney and/or cyst infection(s). (41)              30%

     Total: 134 votes.


April's PKD Survey

What was the cause of death of your closest deceased relative with PKD?

heart failure/heart disease
/blood pressure related (22)                 28%

kidney failure (14)                                18%

stroke/anuerysm
/vessels/bleeding (20)                           26%

accident/homicide/suicide (0)                 0%

transplant rejection (1)                           1%

transplant complications
other than rejection (2)                           2%

surgery complications
other than transplant (1)                         1%

infection/septicemia
/infected kidney/cysts (4)                       5%

dialysis complications (3)                       3%

other (9)                                                11%

       Total: 76 votes


March's PKD Survey

Have you had a kidney infection?

                 no, I haven't.  (115)           53%

                 yes, once.  (29)                  13%

                 yes, a few times.  (30)       13%

                 yes, many times.  (42)       19%

                 Total: 216 votes.


Feb.'s PKD Survey

Do you have high blood pressure (bp)?

        no, I have low bp (37)                                             12%

        no, I have normal bp. (58)                                      19%

        yes, but I'm not taking anything for it. (24)             8%

        yes, but it's controlled w/meds. (136)                     46%

        yes but it is hard to controll, even w/meds. (37)     12%

        Total: 292 votes.

Jan.'s PKD Survey

Have you ever had kidney stones?

                no, never. (128)                    65%

                yes, once. (30)                      15%

                several times. (36)                 18%

                Total: 194 votes.


This poll was suggested to me by someone on the list and I really wanted to do it. I had a terrible time phrasing it since I use an automatic poll which uses a set format. This was the best we could come up but it got ended up getting me my first complaint letter.
The person thought the poll could be misleading because it didn't seem to end up being the 50% inheritance that you normally hear. It does actually come very close with 32% of people under 50% and 34.4% being over 50% and 33.6% right at 50%. But the poll was actually set up to give you the break down of inheritance, not the over all rate of it.
I added the comments in blue to help make the percentages clearer since another problem the person had was how many people would have 1 out of 10 kids with PKD. I think most people understood that up to 10% included 0% but I realize it could be confusing. Hopefully, this makes it easier for everyone to understand.
 

Dec.'s PKD Survey

 What % of children inherited PKD in your family?

                       up to

                       10%  includes 0%, 1/10 (24)    19.7%

                       20%  1/5 (2)                           1.6%

                       30%  1/4 (9)                           7.4%

                       40%  1/3, 2/5(4)                      3.3%

                       50%  1/2 (41)                          33.6%

                       60%  3/5 (7)                            5.7%

                       70%  2/3 (8)                            6.6%

                       80%  3/4, 4/5 (8)                     6.6%

                       90%  9/10 (2)                          1.6%

                      100%  all (17)                           13.9%

                Total: 122 votes.


Nov.'s PKD Survey
 

When it comes to PKD, my nephrologist

                is an expert on it. (41)                     16%

                is very good. (75)                           30%

                is good but still learning
                about the disease. (79)                    32%

                is just OK. (13)                                5%

                is not that great. (8)                          3%

                I don't have a neph yet (28)             11%

                Total: 244 votes

Oct.'s PKD Survey

I received PKD from?

                my parent. (203)                    70%

                genetic mutation. (36)             12%

                don't know. (51)                     18%

                Total: 290 votes.


This is the very first PKD Survey

Sept.'s PKD Survey

Do you feel pain in your kidneys?

                never (44)                      17%

                seldom (40)                    15%

                sometimes. (86)              33%

                frequently (70)                27%

                all the time (18)                6%

                Total: 258 votes.1