Wednesday, March 25, 2009

Freaking Doctors????

So, yeah yeah I have a hereditary kidney disease. It is called Polysistic Kidney Disease. I have known about it since I was 18. I wasn't shocked to learn I have it -- you have a 50% chance of passing it to your offspring. My mother had 4 children -- 50% of 4 is 2.......I am one of those 2. I know I know I decided to have 2 children. I hope and pray that neither of them have it!!!! In our family history it (kidney failure) doesn't usually occur until sometime in your 40's. I have watched this disease kill 3 people in my family -- my mother, grandmother & Great Uncle Arthur. These are the only people in my family that I have known with this freaking disease.

So, for the most part I have been proactive with the disease since I found out I had it. I don't consume added salt. I don't cook with it. I try very hard to not eat high sodium foods (but, sometimes you just MUST HAVE BACON!!!!). It's isn't fun............

The thought of what awaits me FREAKS me the F*$# out!!!!! Being connected to a machine 3 to 4 times a week while the blood in my body travels through tubes to be cleaned by a machine and then back into my body FREAKS me the F*$% out!!! This isn't something new -- I have ALWAYS had the fear. When my mother was alive prior to her heart surgery she had her "treatments" at home -- I couldn't even go into the room -- I couldn't look at the machine. This is what the "basic" set up looks like -- a "comfy" chair and the freaking machine.

It's not that I am not grateful for an option - I am! I just HATE that this is my option. This machine - the machine of my nightmares looms................3 to 4 times a week for 4 hours a stretch!! It doesn't matter what day it is
I remember my mother's arm just above her wrist -- it was oddly large and mis-shaped. She had at least 2 grafts in there (they are used to access the veins for the machine they are permanent). Is that what I look forward to? Yes. My Dr. informed me today that I am "officially" stage one -- NOW, that is the very beginning of this process. I still have between 50 and 60% kidney function which is good. But, hearing that it FREAKED me out. My Dr. chose that moment to take my blood pressure -- guess what it was more elevated than normal!!! Go figure. It was a super rough appointment -- to top it off I had Brendan with me. I try and go to these appointments alone. Brendan stopped a ginormous 7th grader in PE yesterday with his nose. I was pretty sure it wasn't broken but it is still swollen -- he is getting black/purple eyes and it HURTS!!!! I just wanted to check!!! Anyhow it was a rough appointment. We have a plan. I am actually going to call the Dr. tomorrow and see if we can step it up a bit.
O.K. I'm done........Pity party for me is over...........................................


Kirsty Wiseman said...

oooh sorry you have to go through that, my friend :(

You asked what the soda tastes like?
Its very strong but strangely very moreish - I cant truly describe it to you. Want me to send you one to try?

Valerie said...

Penny you should have called me immediately. I can be your sounding board. Uh two kids with kidney disease. I have been thinking about doing a "thing" about home dialysis. Maybe I am a little more motivated now. It's a lot of work and you may not choose to do it, but Jamison doesn't follow the diet AT ALL! His face isn't puffy and his color is normal. He has perfect labs and is in optimal health. Hu LOVES home dialysis. The machine doesn't look like that anymore. It still isn't any fun, but the people at NWKC are phenomenal. I'm not at all saying that I can understand what you are feeling. I'm not trying to say that at all. All I know is thefear of a parent, and the "why two of my kids?" For mine it's not PKD. They don't know why, I kind of have an idea. Remember Janet at Kent Parks. Maybe you know already but she is a long time kidney diseas-er survivor As far as your access. Get button holes. I have a picture of Jamison's. He doesn't have that rope looking thing on his arm. They won't tell you about button holes unless you ask. I'm sorry Penny, I really am. You are so awesome.I love you so much and I cry as I write this. This can be such a teaching tool. You can be such an advocate....transplants you know! Our kidney is coming any day...Jamison will "pee" then. Please call me if you need to and I will consider doing a series on home dialysis. In order to have a testimony you will need to be tested. Trite words I know but you are such a survivor. One of my heroes. I love you bunches.