Thanks to both of you for your replies. Did this kidney forum just get started? If I was reading corretly, it looks was it was just added in June. Its so nice to communicate with people who really understand this disease. A lot of people think they understand, but until they are in our shoes, they really don't.
I hope your appoitments went well yesterday. I had my blood test and nothing has really changed. Although they are not good, at least they didn't get worse! My potassium was high. It really flucates. My biggest problem is that I love summer fruits and as much as I try to control my intake, its really hard. So I'm pretty sure that's why I have potassium problems. My doctor is always concerened with my potassium levels but (I know this sounds bad, but I don't worry about
it). I really believe the majority of the time it rises is because I eat too many things that are high in potassium. In my mind, I think I can control it but I'm not sure if that's the correct way to think.
I have a doctor appointment this Monday and I can tell you exactly how the conversation will go. My nephrologist, whom I really respect, will try to convience me to start. Then I'll say I'm not ready and I really don't feel too bad. Then he will say, you don't really know how bad you feel because you've been feeling crummy for so long that you don't know what its like to feel good! Then the conversation will go on and on with him trying to give me all the reasons I should start and I'll tell him all the reasons I shouldn't! Its been like this for about
6 months. I've been going to him for about
14 years. He's really great. He never rushes you through your appointment. He's very detailed when he gives me information and always returns my calls shortly after I leave messages. Sounds funny since I respect him so much, that I don't listen to him! He know I'm not an "uncoorpitative" patient so I think that's why he is so patient with me.
I do have the peritiniel catherter inserted. I'v actually had it for about
a year. I got really sick about
a year ago and thought I was going to have to start so I had the catherter put in. Its burried under the skin. But then things turned around and I started to feel better. That is one of the BIG reasons I'm not ready to start. If I wouldn't have listened to "myself", I would have already been on dialysis. Although I see the numbers, I can't justify starting. I feel that if I can handle the fatigue and occassional sickness, I can hold out.
And as far as giving advice to others, I think we all know that its easy to tell someone else what to do, but when it comes to ourselves, we don't even listen ourselves! I know I'm really good at telling others what to do!! Well, as you can see, I'm a "rambler" so I'll stop for now.
52 year old female
Diagnosed with PKD 1995 (Wow! Time flies!)
Inherited PKD from my dad
Not currently on dialysis