Summer!
I am currently deep in the mountains of North Carolina, staying with my Grandmother. (Donna Jean, my father's mom). I love North Carolina, especially the mountains. I find it one of the most relaxing places to be because my surroundings are superb, and the company is even better.
Last night was a bit of a rough night for me because it was my first night staying in the house since my Grandpa passed away. He's an incredible soul and was an amazing person. The house seems quite empty at times, but I am still always thankful for the family that surrounds me. He died almost 5 years ago, with one of the reasons "funky kidneys". He appeared almost pregnant, or with a larger belly later in life, so it is presumed that it was PKD.
Speaking of which...
Dad and I had our regular checkups with the kidney doctor a week or so ago. That started with me getting my blood drawn, which sucked, as it always does. You know, they should really hurry up on this whole 'finding a cure' business, because my fear/hate/loathing of needles hasn't seemed to get any better. It was better than last time however, when I cried at the lab. I didn't really cry because of the needle or blood draw, but more so because of the reason behind the blood draw. (NOTE: I know we're doing our best in the whole 'finding a cure' business. Don't think that I'm belittling the quest)
Anyrate...
Believe it or not, but I still have PKD. Shocker, eh? Part of me wishes I could just go into the appointments for the yearly check-ups and be told that I am PKD free, but I know that isn't possible. Dad, on the other hand, is! And I couldn't be happier for him! He set up an appointment with a dermatologist because he has had these two spots on his nose that continue to scab over, yet never go away. (I think that he's picking at them, but he says that's not the case... you can never tell with him though. Ha Ha.) He also has to get a bone density test which I'm sure won't be too pleasant, but apparently it is procedure to get that test and go to the dermatologist and the one year point.
Yep! The 26th of this month will mark the anniversary of my Dad's second chance at life. The anniversary of the precious gift that Lori gave my Dad, without a second thought. (Or at least a third). We are actually embarking on a road trip in the next few weeks to travel to Kansas and celebrate with Lori. I'm excited for the reunion and the celebration of a shared life.
I haven't heard from anyone in a while. How's the PKD going for everyone else? How's life in general? I could always use a good story or a new/old friend!
Happy Trails!
Last night was a bit of a rough night for me because it was my first night staying in the house since my Grandpa passed away. He's an incredible soul and was an amazing person. The house seems quite empty at times, but I am still always thankful for the family that surrounds me. He died almost 5 years ago, with one of the reasons "funky kidneys". He appeared almost pregnant, or with a larger belly later in life, so it is presumed that it was PKD.
Speaking of which...
Dad and I had our regular checkups with the kidney doctor a week or so ago. That started with me getting my blood drawn, which sucked, as it always does. You know, they should really hurry up on this whole 'finding a cure' business, because my fear/hate/loathing of needles hasn't seemed to get any better. It was better than last time however, when I cried at the lab. I didn't really cry because of the needle or blood draw, but more so because of the reason behind the blood draw. (NOTE: I know we're doing our best in the whole 'finding a cure' business. Don't think that I'm belittling the quest)
Anyrate...
Believe it or not, but I still have PKD. Shocker, eh? Part of me wishes I could just go into the appointments for the yearly check-ups and be told that I am PKD free, but I know that isn't possible. Dad, on the other hand, is! And I couldn't be happier for him! He set up an appointment with a dermatologist because he has had these two spots on his nose that continue to scab over, yet never go away. (I think that he's picking at them, but he says that's not the case... you can never tell with him though. Ha Ha.) He also has to get a bone density test which I'm sure won't be too pleasant, but apparently it is procedure to get that test and go to the dermatologist and the one year point.
Yep! The 26th of this month will mark the anniversary of my Dad's second chance at life. The anniversary of the precious gift that Lori gave my Dad, without a second thought. (Or at least a third). We are actually embarking on a road trip in the next few weeks to travel to Kansas and celebrate with Lori. I'm excited for the reunion and the celebration of a shared life.
I haven't heard from anyone in a while. How's the PKD going for everyone else? How's life in general? I could always use a good story or a new/old friend!
Happy Trails!
Comments
My Mom goes in for her fistula on Friday and dialysis is likely after. Her function is down to 14 pts, and losing approx 1 pt a month now. She got placed on the transplant list Monday so thats good.
I'm doing ok, still got PKD too ;) I am with ya they need to cure this thing and soon!
Hugs
I know that you are suffering from PKD. I am writing to you because that I am suffering from “PKD” too. I am not a PKD patient, none of my family member is. I am a PKD researcher. In the work, I found out that some of the important data which were published and used by the laboratory to apply for NIH（National Institutes of Health）grants were falsified and fabricated. I presented the evidences and made complaints to the principle investigator of the laboratory and the officials in the institute. However, I was retaliated against for my whistle blowing and was asked to leave my position. If the research misconduct is covered up, millions dollars of taxpayers' money could be in danger of being wasted, the health of patients like you could be in danger of unprotected, and the truth would be buried by the lies. The adverse impact to PKD family is obvious.
I found the falsification and fabrication on PKD research were extensively spreading in the field. It is ridiculous and astonishing. Among all the false papers published, the cilium story is the most egregious one. I have plenty of evidences and reasons to say that most of the papers about the PKD and cilium were fake.
Meanwhile, I would like to say that it is like emperor’s new clothes, only kid like me (in Science) spoke up.
Is it hard to believe? Contact me for details, if you are interested.
In the end, I sincerely wish you and all PKD patients would obtain real cure sooner.
Linc
lincbacon@yahoo.com