She's Baaaaaack
Hello Hello!
Here I am, yet again, posting an entry that makes me want to apologize for not writing more. Eh. It happens.
Tomorrow I'm headed off to the National PKD Convention in Chicago, with my parents and little sister. I'm not sure if all of us are attending the conference, but it I know for a fact my dad will be there with me, staying by my side and ready for the questions.
We decided that this would be a good conference to attend for a few reasons: 1-It's not that far away, 2-There are a lot of questions that we have and always love knowing more about PKD and the way things work, and 3- Dad and I were talking after I got my test results from Colorado and we both decided that it is time to know more and for me to find more people my age with PKD.
Basically the information that I got from Colorado confused, and upset, me a little. But then again, I don't know if I have reason to be upset or not, which is why I'm excited to go to the convention, AND I have gotten a list of things I want to ask my doctor when I go for my checkup in July.
This is what I got: (I had to convert all the numbers becuase they were in different units of measurement becuse they were taken directly from the MRI. I might have even converted them wrong, but I know they compute volume so I thought converting them to a weight that I was familiar with would make it wasier to understand.)
My right kidney weighs 20.25oz (1.27lbs) and measures 14.3x9.1x7.9cm. The biggest cyst is 5.6cm.
My left kidney weighs 22.85oz (1.43lbs) and measures 15.4x9x11.3cm. The biggest cyst is 9cm.
My kidneys grow at a rate of 5.2oz a year.
Final Diagnosis: I have severe cystic kidney disease with normal kidney function. I tried to understand how to read the blood/urine tests to check the creatinie level but I wasn't sure how. I think for one test it was 1.3, but I don't know for sure. That will be a question for me to ask Dr. Porile (my nephrologist).
After converting, I did some research so I could put things into perspective. (I really like to know how things work, why they work that way, and understand what is going on in the world around me/my life)
The average adult kidney weighs 4oz (.25lbs)
I also tried to figure out the growth rate, but had some trouble with that one.
Also, as I was reasearching, I read about ADPKD and it's two types; PKD1 and PKD2. The difference between the two is the defect on the chromosone. The majority of the PKD population, roughly 85%, has the first kind, PKD1, which is a mutation on the 16th chromosone. The other part of the PKD population, roughly 15%, has the second kind, PKD2, which is a mutation on the 4th chromosone.
"Cysts and kidney failure occur at an earlier age in PKD1 disease; the average age of end-stage renal disease (that is, needing dialysis or a transplant) is approximately 57 years in PKD1 disease versus 69 years in non-PKD1 disease." (http://www.uptodate.com/patients/content/topic.do?topicKey=~Zn9BAWqzJRzqQZ)
I didn't know that, and I'm sure there is a lot more that I am not aware of, so I'm looking forward to this conference!
Here I am, yet again, posting an entry that makes me want to apologize for not writing more. Eh. It happens.
Tomorrow I'm headed off to the National PKD Convention in Chicago, with my parents and little sister. I'm not sure if all of us are attending the conference, but it I know for a fact my dad will be there with me, staying by my side and ready for the questions.
We decided that this would be a good conference to attend for a few reasons: 1-It's not that far away, 2-There are a lot of questions that we have and always love knowing more about PKD and the way things work, and 3- Dad and I were talking after I got my test results from Colorado and we both decided that it is time to know more and for me to find more people my age with PKD.
Basically the information that I got from Colorado confused, and upset, me a little. But then again, I don't know if I have reason to be upset or not, which is why I'm excited to go to the convention, AND I have gotten a list of things I want to ask my doctor when I go for my checkup in July.
This is what I got: (I had to convert all the numbers becuase they were in different units of measurement becuse they were taken directly from the MRI. I might have even converted them wrong, but I know they compute volume so I thought converting them to a weight that I was familiar with would make it wasier to understand.)
My right kidney weighs 20.25oz (1.27lbs) and measures 14.3x9.1x7.9cm. The biggest cyst is 5.6cm.
My left kidney weighs 22.85oz (1.43lbs) and measures 15.4x9x11.3cm. The biggest cyst is 9cm.
My kidneys grow at a rate of 5.2oz a year.
Final Diagnosis: I have severe cystic kidney disease with normal kidney function. I tried to understand how to read the blood/urine tests to check the creatinie level but I wasn't sure how. I think for one test it was 1.3, but I don't know for sure. That will be a question for me to ask Dr. Porile (my nephrologist).
After converting, I did some research so I could put things into perspective. (I really like to know how things work, why they work that way, and understand what is going on in the world around me/my life)
The average adult kidney weighs 4oz (.25lbs)
I also tried to figure out the growth rate, but had some trouble with that one.
Also, as I was reasearching, I read about ADPKD and it's two types; PKD1 and PKD2. The difference between the two is the defect on the chromosone. The majority of the PKD population, roughly 85%, has the first kind, PKD1, which is a mutation on the 16th chromosone. The other part of the PKD population, roughly 15%, has the second kind, PKD2, which is a mutation on the 4th chromosone.
"Cysts and kidney failure occur at an earlier age in PKD1 disease; the average age of end-stage renal disease (that is, needing dialysis or a transplant) is approximately 57 years in PKD1 disease versus 69 years in non-PKD1 disease." (http://www.uptodate.com/patients/content/topic.do?topicKey=~Zn9BAWqzJRzqQZ)
I didn't know that, and I'm sure there is a lot more that I am not aware of, so I'm looking forward to this conference!
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