Introduction
So I've always enjoyed writing, and I've got a lot to think about. I was on the website, www.pkdcure.org and I was reading some of the blogs on there and they just made me feel connected. There was the one that Nathan wrote. He had a transplant in January of this year. That's hope. I skimmed through the other ones, but I think the transplant one really got me.
My name is Lydia. I'm going to be 18 in 3 days, and I have polycystic kidney disease (PKD). I don't know who's going to read this blog and whatnot, but just in case you don't know, PKD is:
Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases, effecting 600,000 Americans and 12.5 million people, worldwide. ADPKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined.
ADPKD causes fluid-filled cysts to grow on the kidneys. Over time, these cysts multiply and grow, in 50 percent of cases, causing kidney failure. Dialysis and transplantation are the only treatments for kidney failure. There is no treatment or cure for PKD.
ADPKD affects 1 in 500 newborns, children and adults regardless of sex, age, race or ethnic origin. It does not skip a generation. Parents with ADPKD have a 50 percent chance of passing the disease on to each of their children.
There are two types of PKD. The most common one is ADPKD, and above is the information given on the website pkdcure.org. I will probably site that website a few more times, because I have found it extremely helpful with a lot of things. So anyway, there are cysts on the kidneys. On the inside and the outside. If you want to freak yourself out, then go ahead and do an image search on google for "polycystic kidney disease"... not a pretty sight. My father and I both have ADPKD.
I don't really remember when my dad was diagnosed with PKD. I don't remember how they found out either. I honestly wasn't too worried about it, and not a lot of memories stick out of my mind when it comes to the diagnosis.
I remember one day we got in a fight, and my dad told me that the doctor gave him 10 years until his kidneys fail, and that was why he was more stressed out than me. I am not going to hide the fact that I was a pill growing up. Especially when I was in my pre-teen/teen years. I gave them hell.
Hearing my dad say that made me think a little bit more about what was going on, but I was still pretty much in the dark on the whole ordeal... until it started to directly affect me.
I found out that I had PKD when I was coming home from a youth group retreat. I was wrestling with someone, and they threw me down and elbowed me in the stomach to prove defeat. The wind was knocked out of me, as well as my ego. Because I lost that match.
When I got home I noticed that I was peeing blood. (sorry if that's graphic) I told my mom, and she assumed that it was a bladder infection.
That was on Friday. I have a younger sister and it was her birthday that weekend, so we were pretty concerned with the party that was coming up, so we put the bladder infection on the back burner.
Honestly, it bugged me a lot. I didn't like the whole cranberry-pee thing that I had going on. It freaked me out. And I didn't like it. I think it was the summer before freshman year, and I had just turned 16.
Father's day was that Sunday and on the way home from church, we finally stopped at the walk-in clinic so I could get everything checked out. My mom and I went in, and everyone else went home. We had the cutest little Scottish doctor that had someone do an ultra-sound, and that's when they found the cysts on my kidney, and determined that I probably shared the disease with my Dad.
Mom and I went over to the ER, and my dad and my two sisters met us there. We did a CT scan and confirmed the diagnosis, and we set up an appointment with my dad's kidney doctor.
It will always strike me as ironic that we found out on Father's Day. That was June of 2005.
So where are we now?
My dad now has 14% function and is on the donor list. We have gone through 2 or 3 donors, and are on our last one right now. Her name is Lori and she's been a blessing to our family. She lives in Kansas, and we live in Indiana, but she's willing to make the trip to Indianapolis for my dad. She's healthy as an ox and has gotten pretty far. She's compatible in 4 out of the 6 antigens. ( I don't know what that means, but they like to do the non-living transplants with 3 out of 6). She goes to a psychologist next week and is seeing a kidney specialist as soon as they can fit her in.
We are extremely hopeful and are praying that she will be the one for my dad. We're hoping to have the transplant at the end of the month.
I signed up to be in a test program in Colorado. And that could be a reason why this blog could be interesting to you. I can tell you first hand how the testing programs are going. This one will give different patients a placebo and a pill for high cholesterol. They're thinking that the cholesterol medicine will help to stop the cysts from growing. If you want more info you can check out the website at: http://www.clinicaltrials.gov/ct/show/NCT00456365
Last that I heard, I was accepted and they would be flying me and a parent out to Colorado. I'm pretty excited and nervous. It feels to be doing something to start to find a cure. They are a little slow on getting back to me, so I'm a bit nervous that I won't be able to do it. But if that one falls though, then I want to find another one. I believe that we can find a cure, and I want to do everything that I can to help!
My name is Lydia. I'm going to be 18 in 3 days, and I have polycystic kidney disease (PKD). I don't know who's going to read this blog and whatnot, but just in case you don't know, PKD is:
Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases, effecting 600,000 Americans and 12.5 million people, worldwide. ADPKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined.
ADPKD causes fluid-filled cysts to grow on the kidneys. Over time, these cysts multiply and grow, in 50 percent of cases, causing kidney failure. Dialysis and transplantation are the only treatments for kidney failure. There is no treatment or cure for PKD.
ADPKD affects 1 in 500 newborns, children and adults regardless of sex, age, race or ethnic origin. It does not skip a generation. Parents with ADPKD have a 50 percent chance of passing the disease on to each of their children.
There are two types of PKD. The most common one is ADPKD, and above is the information given on the website pkdcure.org. I will probably site that website a few more times, because I have found it extremely helpful with a lot of things. So anyway, there are cysts on the kidneys. On the inside and the outside. If you want to freak yourself out, then go ahead and do an image search on google for "polycystic kidney disease"... not a pretty sight. My father and I both have ADPKD.
I don't really remember when my dad was diagnosed with PKD. I don't remember how they found out either. I honestly wasn't too worried about it, and not a lot of memories stick out of my mind when it comes to the diagnosis.
I remember one day we got in a fight, and my dad told me that the doctor gave him 10 years until his kidneys fail, and that was why he was more stressed out than me. I am not going to hide the fact that I was a pill growing up. Especially when I was in my pre-teen/teen years. I gave them hell.
Hearing my dad say that made me think a little bit more about what was going on, but I was still pretty much in the dark on the whole ordeal... until it started to directly affect me.
I found out that I had PKD when I was coming home from a youth group retreat. I was wrestling with someone, and they threw me down and elbowed me in the stomach to prove defeat. The wind was knocked out of me, as well as my ego. Because I lost that match.
When I got home I noticed that I was peeing blood. (sorry if that's graphic) I told my mom, and she assumed that it was a bladder infection.
That was on Friday. I have a younger sister and it was her birthday that weekend, so we were pretty concerned with the party that was coming up, so we put the bladder infection on the back burner.
Honestly, it bugged me a lot. I didn't like the whole cranberry-pee thing that I had going on. It freaked me out. And I didn't like it. I think it was the summer before freshman year, and I had just turned 16.
Father's day was that Sunday and on the way home from church, we finally stopped at the walk-in clinic so I could get everything checked out. My mom and I went in, and everyone else went home. We had the cutest little Scottish doctor that had someone do an ultra-sound, and that's when they found the cysts on my kidney, and determined that I probably shared the disease with my Dad.
Mom and I went over to the ER, and my dad and my two sisters met us there. We did a CT scan and confirmed the diagnosis, and we set up an appointment with my dad's kidney doctor.
It will always strike me as ironic that we found out on Father's Day. That was June of 2005.
So where are we now?
My dad now has 14% function and is on the donor list. We have gone through 2 or 3 donors, and are on our last one right now. Her name is Lori and she's been a blessing to our family. She lives in Kansas, and we live in Indiana, but she's willing to make the trip to Indianapolis for my dad. She's healthy as an ox and has gotten pretty far. She's compatible in 4 out of the 6 antigens. ( I don't know what that means, but they like to do the non-living transplants with 3 out of 6). She goes to a psychologist next week and is seeing a kidney specialist as soon as they can fit her in.
We are extremely hopeful and are praying that she will be the one for my dad. We're hoping to have the transplant at the end of the month.
I signed up to be in a test program in Colorado. And that could be a reason why this blog could be interesting to you. I can tell you first hand how the testing programs are going. This one will give different patients a placebo and a pill for high cholesterol. They're thinking that the cholesterol medicine will help to stop the cysts from growing. If you want more info you can check out the website at: http://www.clinicaltrials.gov/ct/show/NCT00456365
Last that I heard, I was accepted and they would be flying me and a parent out to Colorado. I'm pretty excited and nervous. It feels to be doing something to start to find a cure. They are a little slow on getting back to me, so I'm a bit nervous that I won't be able to do it. But if that one falls though, then I want to find another one. I believe that we can find a cure, and I want to do everything that I can to help!
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