Friday, April 06, 2007

Educating others

One sister said to my other sister, "Maybe Heather's cysts will shrink after a while."

Nope, doesn't work like that.

Another family member said, "But you're stable, right? You just have to make sure your cysts don't grow any more, right?"

Well, it's not like I can really control the growth of the cysts. That sort of reminds me of the time when an old boyfriend asked me why so many women so often had "accidents" when they were on their period. He said, "Isn't it like pee, a flow you can control? It all comes from the same place, right?"

Um, no. Sorry.

Even my FIL was surprised to hear that DH and I are worried about how we could financially swing a kidney transplant. "Heather's going to need a kidney transplant?"

Well, hopefully, maybe not. Probably, statistically speaking, yes.

So how do I educate everybody around me about PKD, short of posting a fact sheet on my forehead?

Part of me thinks that people aren't really all THAT interested, or even all that comfortable talking about the disease. After all, it is something kind of heavy, and not something most people have to deal with, or even have to face very often. It's easier to get a 3 second sound bite of info, nod appreciatively, and move on.

My husband finally showed my FIL some pictures of healthy kidneys versus polycystic kidneys, which certainly drove home the point that my kidneys are not, and never will be, normal. Still, I'm not sure that even that was enough, as there are many other factors related that aren't covered by a groty kidney picture (something I never look at anymore, by the way. Too freaky. I've seen them on ultrasound, and that's enough for me, thank you very much!)

I suppose I just need to cut everybody a lot of slack, as they aren't as affected by this as my immediate family, and therefore don't spend hours trolling on the internet, medical journals, anatomy books, etc for every scrap of information available on kidneys and this disease. I'm still going through my own adjustment period. I suppose it's only fair that I let others go through theirs.


stephanie said...

Hi , being new to all this I am in this position too ,But I am still shocked your sisters do not find out more ? FIL I understand men being, well men .lol. I assume your siblings have been checked out? My own sister is 10 years younger than me and while concerned for me, doesn’t seem to have realised this may affect her and her children too. I have asked her to see her doctor and tell him but she says, one day, she will...I also find the general public seem to know nothing, absolutely nothing about it. Do you find when you tell people they all ask the same thing” so what treatment is there?” and when you say there isn’t a treatment they think you are being pessimistic or a dooms dayer or some thing ,they simply do not believe there is no treatment and it is a progressive disease ,they do all seem to think it will just go away, kind of like your sister. Shame they are not right.

Heather O. said...

Yes, my sisters have all been tested, but I think that they haven't steeped themselves in all of the information in the same way that I have.

And yes, the general public nearly almost always know nothing, and yes, I've found that they think that "Surely there must be SOMETHING" when I tell them there is no treatment. I've had people tell me I should look into homeopathic things, that something all natural could reverse the damage, or something. And for some reason, the idea that it is a progressive disease seems particularly hard for people to wrap their minds around. I think one of the issues is that people with PKD can, up to a point, at least, lead fairly normal lives, which makes people assume that things aren't very bad. In some ways, that's good--I'd like to live a normal life for as long as possible, thank you very much. In other ways, it makes it a little more difficult to press upon people the serious nature of the disease.

But again, maybe in some ways ignorance is a good thing. It could make things sort of awkward if your friends were always reminded of your disease. Having people forget is helpful in maintaining normal friendships, etc.

stephanie said...

Yes ,I have written about how an alternative treatment is helping me with my pain(mind you I think my change in diet may be just as affective)But I went to see a woman who can do the treatment who is closer to were I live and she claims to be able to cure me. I do not believe this and am reluctant to go to some one who is so ignorant. I expect pain relief not a cure, if they could cure it, they would be world famous .lol. Maybe.
I have also been told many times how a positive attitude can fix me too ,I mean a positive attitude will give you a better life and may be ,just maybe make you take better care of your self so slow it down if your lucky but to me it seems like they are saying if I just think I will get better I will ,like I some how have some kind of control over it and I am some how failing if my cysts grow .I find it kind of insulting while at the same time do not want to think I have no hope and be miserable. Do you under stand that?

Heather O. said...


I think that a "cure" for pain and pain management is something very different than an actual cure for the disease. I would be actually quite willing to believe that there are a number of holistic and alternative therapies for pain. That doesn't solve the underlying problem, however, and I would also be wary of somebody claiming they could cure the whole shebang.

On the positive attitude thing--I've wondered about that myself, mainly because people talk all the time about "beating" a disease, like beating cancer, or something. But then there are other disease, like diabetes, or cystic fibrosis, that can't just be "beat". I think PKD falls into that category. However, probably most people don't understand that, and think it's something like cancer that could be treated and then with luck, be gone forever. Wouldn't that be nice :)? A positive attitude can be good for overall mental health, though, and in a lot of ways, that's just as important.

Jack Nowicki said...

In this post you write, "Part of me thinks that people aren't really all THAT interested, or even all that comfortable talking about the disease." That's been my experience too, over the past ten years with PKD. I think it is difficult for people to accept us with our new condition, and so they just shy away from integrating it into their concept of us. Others go the other direction and ask every time cautiously, "How ARE you?", I tell you, it gets very old reporting on the progress of PKD every time you see someone. That's part of the reason I started my blog. Now I say to those people, "check the blog". I also spend a lot of time referring people to web sites to explain PKD and Dialysis too. And, then I can tell who's really interested when I see them again. At any rate, good luck in the ongoing adventure of living with PKD. Sounds like you're making it so far. JN

Heather O. said...

Thanks for the comment, Jack.

HeatherT said...

There are a lot of studies that indicate there is a way to slow the progression of chronic kidney failure by limiting your protein intake. Most of the research I have read limits protein to 0.5 grams per kilogram of body weight. That just 30 grams a day for me and I weigh 135 pounds. It's difficult at first, but if it slows the progression of my PKD, I'm willing to give it a try. I have a bibliography in my blog if you'd like to check out any of the citations: .

I recently went through my transplantation evaluation. Things are getting very real for me. I've known for most of my life that I have PKD, but I always thought the odds would be on my side.

I want to tell everyone I can about the low-protein diet information I have read. If I had known about it earlier, perhaps I could have gotten another 1-2 years.

Take care

Heather O. said...

Heather T-

For what it's worth, I attended the PKD conference last year, and the new CRISP study indicates that severe protein restriction actually did little to help slow the progression of PKD. It seems that there remains more research to be done to determine exactly what kind of diet is appropriate for people with PKD. Besides the low sodium issue, which helps with blood pressure, and no caffeine, which is thought to exacerbate the cysts (and causes my own kidneys to hurt every time I drink it)according to the doctors at the conference, there have been no successful human trials of various diet (alkaline, low protein, etc) that seem to radically affect the progression of the disease. They did say, however, that obesity is a huge problem and can cause complications with the transplant, etc, and that an overall healthy weight and diet following general health principles is clearly beneficial.

Frustrating, isn't it, that there are no real clear answers.

HeatherT said...

Relying on a single study (CRISP) is not a good scientific approach. Physicians should rely on evidence based medicine (double blind studies) and systematic reviews (meta-analysis) of past studies. I am a science librarian and used to work for a major university with a medical school. Perhaps the doctors you spoke with are not familiar with this resource because there seems to be a medical predjudice against nutritional treatments.

I have compiled a list of references to medical research articles concerning low-protein diets and chronic renal failure of which there are many. Most significantly, there is a Cochrane Library review article on this topic. If you aren't familiar with Cochrane reviews, they are systematic reviews, authoritative, scholarly and recognised by medical professionals and the academic community as the "gold standard in evidence-based health care." If you want to read this article, check at your local library (if they don't have access to Cochrane Library reviews, they can order it for you from another library). Most likely they won't have it on hand because this is a specialized resource purhcased typically by libraries that serve medical school programs.

Here is one significant portion of the Cochrane Review:

"Updating two previous meta-analyses...this review shows that reducing the protein intake of patients with chronic kidney disease significantly reduces the number of patients entering end-stage renal disease by about 30%..." (D. Fougqu, M. Laville and JP Boissel. Low Protein Diets for Chronic Kidney Disease in non diabetic adults (Review). Cochrane Library, v.1.)

I see you are a smart woman as you mention that you have done research on your own. Please question what the doctors tell you and continue to do your own research. Read some of the articles in my bibliography or even better, ask your doctors about them...specifically about the Cochrane Review article. I would be interested to hear what they say.