Well, this month I do have a special interest due to three letters...PKD.
Don't know what PKD is? It's polycystic kidney disease. I don't know of ever not knowing what it is. It has been a part of my life for as long as I remember.
My daddy's dad had it. He died in his thirties leaving my three year old dad and his siblings without a father. Of course, I never knew him.
My daddy was diagnosed and told that he would have to slow down. You see, it is believed that the disease progresses similar in relatives. My daddy's didn't. He showed them! He didn't let his disease overcome him but rather fought through the difficulties. He eventually had to go on dialysis. A few years ago, he was blessed to receive a kidney transplant.
For as long as I remember, I have had to take care of my kidneys. The problems started when I was a very small child. I ended up being subjected to constant tests, medicines for years, frequent specialist/doctor visits, a couple of hospital visits...all before I was in the middle of elementary school. I don't remember a time when I felt normal.
Things got better. I graduated high school and went to college without much difficulty. I excelled in school and graduated with honors. I had a dream of success and I set out to conquer the world my way!
After school, I moved away from home a few states away...Big mistake, but a learning experience. During that time, I was hospitalized. It was guessed that I developed a kidney infection from drinking water that my body was accustomed to consuming. During that hospital stay, I was told that my kidneys looked clear...no PKD. Since I was in my 20s, if it was going to show, it should have shown by then. I felt a sigh a relief.
Life went on. I had a daughter, moved back home and started a new life. Although I continued to care for my kidneys (it was almost routine at this point), I lived under the impression that I wouldn't have to face the ugliness of PKD in my own body.
I met and married the man of my dreams...literally, but that's another story! ;) Then a few weeks after we were married, a doctor's visit for side pain turned my life upside down.
I knew there was something wrong by watching the face of the examiner. I've learned to read faces when I go for tests. The human face finds it harder to conceal things than does silence of the lips. Without a word, I could see something wasn't right.
I was right. Once the doctor saw the film, she asked me if I knew about polycystic kidney disease. There it was...those three letters: PKD! Of course, I knew. I felt hostility every time I heard the words...those letters. But this time the hostility was joined by hurt and numbness.
I remember coming home to my hubby of only a few weeks and crying. I just kept crying. Crying because of the shock. Crying because I had my little girl to care for. Crying because I didn't want my hubby and my daughter to live with the constant heaviness that those three letters represented in my life. Crying because it was the only thing that I could bear to do. ...And he just held me...
At least my lifestyle was already pretty PKD-friendly, so I didn't have to alter much there. I simply had to accept what I couldn't change and pray that God would help me. I thought that having PKD was the worst. It makes me feel like a ticking time bomb. It makes me have to work at controlling everything I do or consume. It was more mentally heavy at the time than anything.
Unfortunately, my nightmare would continue to get worse. When my daughter was in the 6th grade, she was diagnosed with PKD. Now that tore my life apart. It's one thing to know the heaviness of an incurable disease. It's another to deal with the overwhelming guilt of passing that own to someone that you love without all your heart. The next weeks and months were torture. I won't go into details but it's hard to help someone accept something that you have a hard time accepting yourself.
I wish I could end this by telling you that everything is all better now...but I can't. PKD is still there. It still has no cure. It fills me with a smaller level of hostility...but, to be perfectly honest, the hostility isn't gone. Those three letters have been a dark cloud in my life by threatening the lives of those I love and even my own. I don't think a love of PKD would be possible. It's a terrible disease and I want to see it gone!! But I have developed a tolerance.
I live with PKD. Did you get that...I LIVE with PKD. While it may dictate some things that I do in life, it doesn't rule my life. I make the choice to cooperate with PKD to make the most of the life that I have. After all, God created me. So, He knows what is best for me. And with Him running my life, I'll do the best that I can. As the years progress, I have to continue to make modifications but I am thankful that I have the time to make them.
I don't know what the future holds. I've been told that my disease should mirror my dad's...But that didn't happen in his case....And I'm a GIRL (big difference on the internal design all you high paid specialists!!).
It has taken me over 12 years to share this story. But I am convinced that if you don't see a person behind the cause that it doesn't mean as much. So, here I am! A face of PKD! A mom, a wife, a friend, a person...a fighter! So, take that PKD!!!
To learn more about PKD, visit the Polycystic Kidney Disease Foundation at http://www.pkdcure.org
