Hello Hello
So.
I'm home, and I have started the new medicine.
I'm feeling excited and hopeful... and exactly the same as before, in a good way of course. The medicine hasn't done anything negative to me, as we knew that it wouldn't.
I just wanted to say thank you to everyone thats been commenting me with words of encouragement and thankfulness. Know that I'm not the only one out there doing these tests and whatnot. I may be one of the only ones who's talking about it, but there are a lot more like me. :)
I think that its really important to take an active part in a disease, especially a disease that you have. If you're interested in giving up some time on a semi-regular basis, then think about doing a testing program. It is not that scary. I admit that I was a little bit nervous at first, but its really not that scary at all. And just think, you get to take an active part in finding a cure for this common disease!
And if testing programs aren't for you, there's always the PKD walk. The years that I went to the PKD walk, I loved it. I wish that I could go back this year, but I happen to have a marching band competition. But they're great. You get to meet the PKD community, and also get to raise money for a worthy cause. They're fun. Filled with music, friendship, laughter, and raffles!
Hang in there guys!
I'm home, and I have started the new medicine.
I'm feeling excited and hopeful... and exactly the same as before, in a good way of course. The medicine hasn't done anything negative to me, as we knew that it wouldn't.
I just wanted to say thank you to everyone thats been commenting me with words of encouragement and thankfulness. Know that I'm not the only one out there doing these tests and whatnot. I may be one of the only ones who's talking about it, but there are a lot more like me. :)
I think that its really important to take an active part in a disease, especially a disease that you have. If you're interested in giving up some time on a semi-regular basis, then think about doing a testing program. It is not that scary. I admit that I was a little bit nervous at first, but its really not that scary at all. And just think, you get to take an active part in finding a cure for this common disease!
And if testing programs aren't for you, there's always the PKD walk. The years that I went to the PKD walk, I loved it. I wish that I could go back this year, but I happen to have a marching band competition. But they're great. You get to meet the PKD community, and also get to raise money for a worthy cause. They're fun. Filled with music, friendship, laughter, and raffles!
Hang in there guys!
Comments
I was diagnosed with PKD in 1986 after years of struggling with high blood pressure. I was place on tenormin and monitored since. That would put me about 38 at the time. For years we watched it and around 2004 things got worse in that my energy levels went down. I needed to leave the fire department that I served as a volunteer firefighter and EMT. That was the hardest. I reached a point where I would need to sleep at least 12 hours a night and I can relate to your fathers diet.
On April 9 th of this year I received my new kidney from my cousin Judy. You can find her as number two on my friends list if you look at my web page. She has blogged extensively about her experience. Judy is much more that a cousin to me she has been like a Daughter to me and we have a long history together as shown in my picture area.
Hardly a day goes by when I am not overwhelmed by the changes in my system. I lost over 30 pounds of fluid and have my energy as well as my life back. As for my donor I have always loved her with all my heart, but now I tell her all the time. It was her persistence and determination that moved us forward. I was so reluctant and yes afraid to put her through this. I was ready to go on Dialyses but she would not have that.
So Lyddie keep up hope and thank you for blogging your experience. I have been thinking of doing that also. My Nephrologists here at Hopkins is currently involved in research on a drug that has shown promise in slowing the cyst growth. Ultimately it should be possible to grow a compatible organ from your own stem cells. The research is in many directions the disease process is now well understood. Your young and will most likely benefit from this research. So from a fellow PKD and kindred spirit I wish both you and your dad well.
Lyddie, you may want to turn your Dad on to this site as I have found it very informative and helpful.
I am 22 and so far I have tested negative for pkd...same for my brother who is 20. I will pray for you and your family...and that everyone that has been touched by pkd will strive ahead for a cure like you have.
Thank you,
Christina
San Diego, CA
I came across your Blog while researching PKD on the PKD Foundation Website. My 15-year-old daughter was diagnosed recently with PKD, and we are still learning what it is all about.
I have read a fair amount of technical information about the disease, but really enjoyed reading your blog in that it made it more personal (not just technical)…there are real people out there dealing with this and still living their daily lives. Again, thank you for sharing your experience with others...you and your family are a great inspiration!