Woah. I'm back.
So I really haven't written since the PKD Convention? If you ask me, that's a little pathetic. :-/
I'm really glad I got to go to that Convention, I learned a lot and got some ideas. I had a lot of questions answered for me; some of them I didn't know I had. I was able to go to my next doctor's appointment very informed and ready with a set of questions to ask him, and a list of little tidbits of information that I wanted to share and have verified.
It was my first appointment without my dad, because he was out of town, but a friend took me there, so that was good. Going to those appointments are always are an "experience" because it's one of the few times out of the year where I really have to deal with PKD as a disease that I currently have. I mean, everyday I still have to take the medicine and every month I send in blood pressure reports, and sometimes I have issues or whatever, but for the most part, because of my age, PKD isn't giving me a lot to worry about. Because of things like the convention and knowing about my dad's experience, I am aware of preventative things I can do (Water. It's the key. There's even a study out there that tells the participants to drink more water, not try out new pills, that has shown success.) and ways to stay healthy so PKD will continue to play a small role in my life.
But when I say life, I guess I really mean health, because PKD has a constant present in my life. It's just at the doctor's office I feel sick, like I'm actually a patient. I don't like the idea of being sick, and I really don't like the idea of having something in my body that is preventing me from doing exactly what I want to do whenever I want to do it. (Yes, I have been called stubborn a few times.)
For example, a week before my doctor's appointment, I organized a little blood drive for one of my friends who has Sickle Cell Anemia. He was undergoing surgery to remove a brain tumor, and to show support, I asked his friends to go out that day and donate blood because with Sickle Cell, regular blood transfusions are needed. I was going to the clinic to donate, and I was filling out the forms, and there it was, that question asking about your kidneys. I put down that I have PKD, but I explained to the nurse that I'm not expected to have complications until later in life and that I was fine now. She looked at my medicines and noticed I was on blood pressure medicine, and informed me that if I have elevated blood pressure my kidneys have some damage to them and that I couldn't donate without a doctor's note.
Yeah, that sucked.
So it's times like that where I have to really deal with the sick part of PKD. The other days I can just be involved in the community and advocacy and whatnot, and that's great. I mean, I get it. It's a disease, it's in my life, and that's okay. Sometimes I just like to have company on the ride to/from the doctor's office. :)
So I really haven't written since the PKD Convention? If you ask me, that's a little pathetic. :-/
I'm really glad I got to go to that Convention, I learned a lot and got some ideas. I had a lot of questions answered for me; some of them I didn't know I had. I was able to go to my next doctor's appointment very informed and ready with a set of questions to ask him, and a list of little tidbits of information that I wanted to share and have verified.
It was my first appointment without my dad, because he was out of town, but a friend took me there, so that was good. Going to those appointments are always are an "experience" because it's one of the few times out of the year where I really have to deal with PKD as a disease that I currently have. I mean, everyday I still have to take the medicine and every month I send in blood pressure reports, and sometimes I have issues or whatever, but for the most part, because of my age, PKD isn't giving me a lot to worry about. Because of things like the convention and knowing about my dad's experience, I am aware of preventative things I can do (Water. It's the key. There's even a study out there that tells the participants to drink more water, not try out new pills, that has shown success.) and ways to stay healthy so PKD will continue to play a small role in my life.
But when I say life, I guess I really mean health, because PKD has a constant present in my life. It's just at the doctor's office I feel sick, like I'm actually a patient. I don't like the idea of being sick, and I really don't like the idea of having something in my body that is preventing me from doing exactly what I want to do whenever I want to do it. (Yes, I have been called stubborn a few times.)
For example, a week before my doctor's appointment, I organized a little blood drive for one of my friends who has Sickle Cell Anemia. He was undergoing surgery to remove a brain tumor, and to show support, I asked his friends to go out that day and donate blood because with Sickle Cell, regular blood transfusions are needed. I was going to the clinic to donate, and I was filling out the forms, and there it was, that question asking about your kidneys. I put down that I have PKD, but I explained to the nurse that I'm not expected to have complications until later in life and that I was fine now. She looked at my medicines and noticed I was on blood pressure medicine, and informed me that if I have elevated blood pressure my kidneys have some damage to them and that I couldn't donate without a doctor's note.
Yeah, that sucked.
So it's times like that where I have to really deal with the sick part of PKD. The other days I can just be involved in the community and advocacy and whatnot, and that's great. I mean, I get it. It's a disease, it's in my life, and that's okay. Sometimes I just like to have company on the ride to/from the doctor's office. :)
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