I was diagnosed with ADPKD less than a week ago.
My father, who I hardly knew until 10 years ago, committed suicide last December and in the autopsy report I learned he had PKD. Since it's a genetic disease and a CT scan from a couple years ago detected "shadows" on my kidneys I decided to get officially checked so I could rule it out and not worry. Well, obviously that backfired.
Since the diagnosis I've been doing research daily. My diet has already been amended to low-protein/low-sodium. Let me tell you how much fun that has been. I was someone who LOVED to cook and try out new recipes. Definitely a carnivore. Now I could care less. I feel so blah about everything. I suppose it's because I'm upset.
I feel so lonely. I'm scared and don't feel like the people in my life can empathize with me. How long before I go into kidney failure and have to be on dialysis? Will I have to get a transplant? When will a cure be found?
My family hasn't mentioned the disease since I told them I have it. I realized Sunday night I must be pretty scared because I started crying for no known reason. I'm trying to be optimistic but that's hard at the present moment. I'm normally such a positive person. What's happening to me?
2 comments:
Hello, PKD Pugilist. I don't have PKD, but my wife does. She was diagnosed in 1992 about one month after we got married. This was after several years of tests to determine the cause of a sharp pain she would regularly have in her side. In her case there is no family history - even though it is a genetic disease, 10-20% of people with PKD get it through spontaneous mutation.
Since the diagnosis, she had our first son in 1995, a kidney transplant in 1998 and twin boys in 2004. Yes, life can be tough for her at times, but it by no means is over. I feel for you - I know it is probably really scary right now - we were both scared when she was first diagnosed - but we've learned that it is something we have to live with. After all, we all have our crosses to bear.
One thing I might suggest is to get involved. I see from your blog that you've found the PKD Foundation Website and that's a great start. You mention you are doing research - another positive approach! Here's something else: This weekend, there is a Walk for PKD at many sites around the country. Consider finding the one closest to you and plan on showing up this weekend. It might give you a chance to meet with others who are going through experiences similar to yours.
The good news about PKD is that while it has been a vastly ignored disease in the past, that seems to be changing quickly. The PKD Foundation is growing rapidly and the yearly walks are becoming more and more successful each year. There really is hope, especially for those like you who have not experienced kidney failure!
Bob, thanks for your positive thoughts. I am definitely motivated by your comments. I am a newlywed and would love to have children so I am thrilled to see the successes you and your wife have experienced. I hope I can be as blessed.
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