Tuesday, January 22, 2008

Once Again, I Am Disheartened ...

I am trying not to be disappointed. After all, medical issues are such a deeply personal subject ...

Perhaps Steven Cojocaru disclosed as much as he could. Perhaps it was a giant leap of faith just for him to speak the words "Polycystic Kidney Disease." I just can't relate. PKD is not an STD. Why would you not want to educate as many people as possible about a disease that you share with millions of other people.

For what it's worth, he comes across as a very kind, charming individual. I don't believe he is being malicious or unkind. However, his appearance on Dr. Phil felt more like an attempt to sell his book "Glamor Interrupted" than an opportunity to talk about his experiences with PKD. And that, quite frankly, is disheartening.

For those of us familiar with PKD, Steven's interview leaves a lot to be desired. PKD is a very specific disease. Although everyone's experience is different, it generally progresses slowly. Some people have symptoms such as pain, blood in the urine, high blood pressure, and kidney stones. While some people never know they have it and eventually die of something totally unrelated to PKD.

So ... what was Steven story? He basically said he never went to the doctor, felt fine, and when he finally went he was told he had PKD *and* needed a transplant. What led up to that appointment? Was he in pain? Did he have any symptoms? Did it run in his family? Because PKD is a hereditary condition ... a fact that, sadly, wasn't even discussed.

None of these things were talked about. I was really hoping he would share information about Polycystic Kidney Disease ... it's frustrating to me. Again, don't get me wrong ... medical issues are a very personal, private thing ... and he isn't required to tell the public anything.

There are quite a few people on Dr. Phil's message boards who posted their dissatisfaction with the episode ... one even went so far as to suggest "Cojo" should donate some of the proceeds of his book to PKD research. I wouldn't go that far. His money is his business and I'm sure he has medical bills just like the rest of us ... especially after two transplants. However, if you're going to go on Dr. Phil to share the story of your transplants with the world ... why not talk about the disease?

If you want more information about PKD, please go here. The bottom line is that Polycystic Kidney Disease (PKD) affects 600,000 Americans and 12.5 million children and adults, worldwide. There is no treatment or cure ... but there IS hope.

We need an advocate, and as Bob pointed out on a comment earlier, statistically there has to be a celebrity with PKD. Isn't there anyone who is willing to get out there and educate the public about the need for funding and research?

So, what do we do with our lives
We leave only a mark
Will our story shine like a light
Or end in the dark
Give it all or nothing

Tina Turner - We Don't Need Another Hero

1 comment:

  1. It may be that he doesn't know enough. I was looking at the statistics in the comments section of post before last. 1 in 500 people. When I was first diagnosed with PKD, I was told it was a rare disease. I met a person once, who had just been diagnosed with PKD and starting dialysis. I was asking him some questions and he was totally clueless.

    I also think some people just do not seek out the details or that everybody gets the same information. My sister was told some things I wasn't and visa versa. She has PKD too.

    I can also relate to Steven Cojocaru focusing more on the transplant. I know the feeling when the transplant doesn't seem like a miracle to you and everyone else wants to think it is.

    First it is the waiting to see if the transplant kicks in, still going to dialysis. Those massive amounts of drugs; changes your body. I began to look like a werewolf. For me, I needed a second surgery ten days later, because of the transplant ureter failure; leakage into my abdomen. I was in more pain from that, than I had ever had with just the PKD or dialysis. After that hospitalization I was back three week later with my white cell count in the pits (from the drugs) and a case of thrush so bad I could barely eat baby food. Then there is the constant reviewing the drugs, dosages, efficacy and side effects. Even though you still have PKD you are now a TRANSPLANT patient.

    Since he had not lived with PKD before his transplant, I can see why his transplant experience might have more of an impact.

    BTW, since I have had my native kidneys removed, the section in my abdomen where they pulled them through, I now have a hernia and require more surgery.