Tuesday, July 1, 2008

What It's Like

Ironically, while it's the cysts in my kidneys that are going to cause me the worst problems down the road, the cysts in my liver are what cause me the most ongoing discomfort. (One of the quirks of polycystic kidney disease is that it can cause large cysts not only in the kidneys, but in the liver and pancreas as well.) It is rare in PKD for liver function to be impeded by the cysts (though it can happen); unlike the kidneys, the human liver has amazing powers of regeneration and is therefore less vulnerable to the formation of scar tissue that will eventually destroy all my kidney function.

The cysts in my kidneys give me pain occasionally. They twinge, or pinch, or throb for a few moments, or longer, and then stop. By contrast, I am always aware of the cysts in my liver. They cause a distension of my abdomen and my liver presses against my bladder and lungs, giving me indigestion and often making me short of breath. When my liver cysts pinch me, or burst, it feels like a stitch in my side after a hard run and the stitch won't go away. I have dreams of being pregnant, with vivid phantom muscle memories of the little baby heels and elbows kicking and pushing from inside my abdomen, and upon waking, it takes long moments for me to realize that what's growing inside me is not a baby.

I don't know how big my kidneys and liver are right now. My last ultrasound was over a year ago, at which point both kidneys measured at about 17 cm (normal size for me would be around 10 cm). At that time, the ultrasound tech measured several individual cysts of 6 cm and 7 cm -- each about the size of a lemon. Everything has surely grown since then.

Size isn't really the issue, though. As the cysts in my kidneys grow, they leave scar tissue in their wake, which means there is less and less healthy kidney tissue remaining to do the important work of cleansing the toxins from my blood. More toxins in the blood means more fatigue and less energy -- both physically and mentally.

As of my last blood work, my kidneys are doing about 40% of the job that they would be doing without the cysts and the scar tissue. This isn't too awful -- most people don't have to start on dialysis until they reach about 20%. The question is (has always been), how long do I have before I hit 20%? There is no way to know. Some PKD patients chug along at 40% for a decade or more and then quickly bottom out; some PKD patients follow a slow curve downward through increasing fatigue, nausea, and pain. It remains to be seen.


Meanwhile, there is work to be done. Public funding for a cure for PKD is an embarrasment. The NIH's February 2008 report shows that annual research spending per patient is $60. That's right, about the cost of an Olive Garden dinner for four. Compare that with the $2,733 spent on research per cystic fibrosis patient or the $1,880 spent per muscular dystrophy patient and you'll see why there is huge work to be done.

The Polycystic Kidney Foundation is an amazing organization which uses over 80% of its budget to directly fund research and provide patient education regarding PKD. They are the only group in the U.S. dedicated solely to eradicating PKD, and last year they funded $4 million in research -- a full 9% of what the NIH spent on PKD in 2007.

Last year, with the help of many wonderful friends and family members, Michael, the kids and I raised $9,000 for the PKD Foundation. (You can read all about it here.) This year, I'd like to make that number an even $10,000. I hope you'll join us. My fundraising page is up and ready for action (and will remain up on the sidebar to your right), and as always, I will post our progress here on the blog. It really will take a village to eradicate this disease, and I'm determined to do so before Quinlan's kidneys start giving him any trouble.

How You Can Help


MemeGRL said...

Hey, when is the walk? I didn't see the date on the website. Maybe I'm just fried from too much pool time.

RuthWells said...

Good point, O. The walk is on September 20, and while we'll be away on that day, we are all going to don our PKD Foundation T-shirts and take pictures of us walking nonetheless.

Adorable Girlfriend said...

I will be sure to stop over shortly and make a donation. Thanks for making this so easy to do.

Anonymous said...

Oh, my dear...what to say....

I have the link to the PKD Foundation website bookmarked but will donate through your your link. We wanted to make the donation in your name - your efforts have been above and beyond.


Magpie said...

Forgive what might be a stupid question, but what causes the disease? If you get to the point where dialysis is necessary, is a transplant an option?

Vinkus07 said...

Have you heard of Reiki? It's a Japanese art of healing . . . my mother & I both practice & have gotten fairly good reviews. She is a Reiki master & I am a level two (There are three levels - possibly more, depending on how you go about learning it) We can both send reiki from a distance - but always ask permission. Would you like us to give a try at sending you some reiki?

RuthWells said...

Vinkus, what a nice offer. I don't know much about Reiki, but it surely couldn't hurt, right? ; )

Vinkus07 said...

We'll send this evening. If there's a noticable effect on your pain, let me know & at least one of us will make it a regular thing (once a week)

-Ripley & Angela

Vinkus07 said...

How did it go on your end?

Usually, people can feel it - sometimes they like it, sometimes they dislike it.

We started sending at 6:30 & usually the practitioner can feel when the receiver's system is accepting/taking the energy. And at some point, the receiver's system is finished & stops taking the energy. The expected intervals of stopping points are 15 minutes, 25 minutes, 45 minutes, & then indefinitely. My mother (who is ahead of me in skill) felt a decline in the acceptance after an hour & I felt the decline 15 minutes later. We stopped around 7:45.

Collectively, over the course of the hour, we sent you a few different types of energy. We did some research in order to give an educated treatment. Since women are more likely to acquire the disease & certain hormones seem to exacerbate the problem, we stayed away from feminine symbols. We sent an emotional energy to relieve stress, lower blood pressure & promote overall relaxation. There is a simple physical energy that we stayed away from because we didn't want to give energy to the wrong parts - we used a more powerful "smart" energy that goes where it is needed & also used a symbol that removed harmful energy.

Just to fill you in. I didn't want you to be uneducated in what we were doing - & before the research & discussion, I didn't know. So, we're through for the evening. Let me know how it went for you.


Kelly said...

I'm so there, Ruth.