4.07.2009

101 Things You Never Wanted to Know

Wow! I mentioned my kidney disease on my blog and people came out of the woodwork to comment and to offer support and prayers. I was shocked at the sincere concern of my friends. These are people that I blog with, commiserate with, drink with, and laugh and cry with. I had no idea that my personal ailment would impact other people.

Here are the boring details: Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of numerous cysts in the kidneys. For even more boring reading, you can look at http://www.kidney.niddk.nih.gov/kudiseases/pubs/pdf/PKD.pdf. That will put you to sleep in a couple of minutes.

When I was 23, I called my parents to tell them I was pregnant with my first son. I lived in Indiana at the time while my husband was in the Air Force, stationed in Peru, Indiana. Mom informed me that Dad had Polycystic Kidney Disease, otherwise called PKD. I immediately offered one of my kidneys to him. And that's when I found out that PKD is one of the highest hereditary diseases, even above Diabetes, and that I more than likely had it too. I was officially diagnosed when I was 28.

There is no cure. But science has been making great strides over the years since I first found out about myself. Dialysis has gotten better. It used to be so abrasive to your system that you would run out of veins to use, or, like in my Dad's case, the solution can cause peritonitis and aneurisms. It's kind of scary.

Of my three siblings, one brother does not have PKD. My sister had a transplant, where her brother-in-law was the kidney donor. My brother had a transplant with a cadaver kidney. Both are perfect matches and both have been very healthy.

OK, that's the boring stuff. My brother and I have banded together to have a positive attitude on this and not dwell on the negatives. This was difficult to manage with our mother – who, for some reason, went through life with a cloud over her head. Every time we talked to her, it didn't matter about what, she would go into a tirade that I called "101 things you never wanted to know about polycystic kidney disease and wouldn't ask your mother so she's going to tell you anyway."

And I still don't want to know about those 101 things. Al and I decided 30 years ago that we would not dwell in the negative. We have both watched our health; we have both kept a sense of humor about our bodies and life. You just can't bog yourself down with heavy, negative thoughts. I remember calling Mom and in the conversation I wanted to speak to Dad but he was lying down, not feeling well, and Mom started on the kidney doom tale: "Your Dad is on dialysis six hours a day, three days a week, for the REST of his life and . . . ." I had heard this so many times that I got to the point I could instantly shut it off and all I heard was "bla bla bla bla bla bla bla." If I told her I didn't want to talk about it, she'd accuse me of sticking my head in the sand. My point of being positive was never taken. So, I shrugged my shoulders and turned on the bla bla tape and did something creative – like watered my plants – until she was done and then we could talk about something else entirely, like the Oregon beach. All is good!

Mom passed away three years ago this May. Her attitude finally did her in. One day, April 22, she was diagnosed with lung cancer. Two weeks later she was in a coma and one week later, May 11, she was dead. I strongly believe her negativity finally got her.

So – back to me. I'm not discouraged. This is just a little snafu on my way through this life. I have an "attitude of gratitude" and my cup is always half full and getting fuller.

Many people asked me what they could do for me. Now here comes the real kerfunkle. One of the most difficult things for me to do is ask for help. Argghhh. I'd rather pull one of my own teeth. What can I ask for, anyway? I could hardly go around to all my friends asking for one of their kidneys. Eeeek. Hey, I love ya man, give me one of your kidneys. [hangs head in shame]

What I can say unequivocally is that friendship with you, all of you, is my ultimate grace. You are what keeps me going and keeps my humor up and my spirits up. I figure I have about 20 Very Best Friends Forever. Many I have never met in person. I have my dinner group friends, my Red Hat friends, my legal secretary/paralegal friends around the United States, and I have you, my blog friends. I figure I am just about one of the luckiest people on the planet. I have blogging friends who are intelligent, intellectual, and sharp; who are funny, witty, and gifted; who are professionals – attorneys, writers, medical, and who home school their children.

I blurked for quite a while and got to know people on Huckleberries. Then one of the first people to interact with me was Marmitoastie. I think we're twins! I'm fairly certain we are related in some way. And then I met Cindy and I tell you what – I think we're triplets! Way too much in common. Maybe it's because we all have boys. Maybe it's because we all love firemen. I don't know. But it's been a kick in the pants. Cindy and I met face to face early on and "knew" each other without introduction. We have bonded.

How blessed can I get? I have it all! See – attitude is EVERYTHING! Now it's not all so bad, is it?

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6 comments:

Cheryl said...

OH, I've been too long away from the blogging community and hate to return to find out that you - one of my fave bloggers - is facing this dis-ease. I do love your attitude, dear one, and know that it will serve you well and 'ease' you back to health.

And what's up with the '60' countdown? You don't look a day over 'young & hopeful'!

Google Raw Foods and also, Green Smoothies for possible things to help with your dis-ease. I like to phrase it dis-ease, because disease is a body not at ease. BUT, I know that YOU can fix that!

I love that you and your brother have banded together in this! You are warrier spirits!

Cheers to YOUR health! Cher

chupacabra said...

"My sister had a transplant, where her brother-in-law was the kidney donor."

Kind of tells you a lot about the family she married into- I hope anyway. Found none of that post boring and I'm glad I found your blog.

JeanieSpokane said...

((Cheryl)) Glad you are back! You need to read Critter Corner for a laugh. Hugs to you!

Chupacabra - Welcome! I'm glad you like my post AND my blog! Keeps me out of trouble. :)

MarmiteToasty said...

Jeane, you know if I was a possible match you could have one of mine.....

Im so never gonna eat Steak and Kidney pie again :)

Im hoping against all hope that non of the above needs to happen.... maybe you will just continue strong and healthy as you are now....

x

MarmiteToasty said...

And who let that chup in the door lmfao

x

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