So the other day I sounded sort of rah rah oh yay we love dialysis about the whole thing. Now i'm sort of moving into more of a love hate teenage relationship on again off again drama about it.
I get it. It's absolutely necessary. It does make him feel better and look better. For a short time. This is why he has to dialyze (a new word I learned) every. stinking. day. The good effects only last a short time.
I had a meeting with his dialysis nurse. Two things here: (1) Nurses are fabulous and will talk to you normal and tell you the real scoop and are flexible and kind but don't have time for nonsense and understand that you have to work and do life things outside of this world of dialysis. I'm totally taking this one cupcakes next week; and (2) she made my head spin and 24 hours later it still hasn't stopped.
When your mama tells you that if you look good you feel good she is right, until your blood is drawn and lab work is run and all of a sudden it doesn't look so good and you have to learn words like blood transfusion and protein levels and creatine and a list of other things that no one taught me in law school people.
I would love to share details and specifics for all of you medical minded types but I'll tell you what I can't quite wrap my head around it all yet. And I'm the healthy one. So if you think Erik is soaking all of this in through some type of dialysis fluid osmosis you would me mistaken. Right now each of us remembers about 1/4 of what we are supposed to know and do.
So this is what I know. Dialysis isn't really the cure all medical miracle with which I had a love fest the other day. It's a temporary fix that allows him to function daily. He still has to take about 20 other drugs and medications and crap and measure things and test things and get lab work on things and eat certain specific foods at certain specific times. We are both still learning.
Next week we are supposed to meet with a nutritionist. I asked if we could skip the meeting and just have a list. I'm a list girl. I need a visual where I can just check things off. Give me a list of what he needs to eat when and it's a done deal. Drone on and on about it and tell me why and make my head spin and this will benefit no one.
Erik tried to make a list of things like his meds and his diet but oh my gosh he writes in chicken scratch and turned the paper to landscape style even though it was lined notebook paper and had columns there were not properly lined up or labeled or highlighted in any appropriate fashion and he did this in pencil. I don't blame this behavior on kidney disease. This is the person who won't let me write in the check book register because I skip lines to make it look nicer and he believes you should use every single line so as not to waste space. At least he gives me focus and purpose because by the end of this week we will have a wall sized flow chart for this stuff that is pretty and efficient and will make use of our 1000 color coordinate dry erase markers.
I love to learn things. I love to read. I will read anything. Any time. You know what? I'm done learning things. I'm done reading things about kidneys and transplants. I think I'm going to just tell them we are at our max now so keep the rest of the info to themselves. You want to talk about whether or not Kortney Kardashian is hiding a baby bump? I'm in. You want to tell me more medical stuff? Save it.
The most important thing we learned last week that has my head spinning is this: The doctors give you all options and not many opinions. I get it. They can't tell you what to do. The nurses will tell you whatever you ask them, hence the planned cupcakes. I asked his nurse flat out what she would do….await a cadaver transplant to get the pancreas too or find a live donor. Without pause she said find a live donor and get a kidney transplant now.
I have been scouring my scrap books trying to find my marriage vows to see if we included "I will give you my left kidney." I can't find it so I'll give the guy the benefit of the doubt. Let the testing begin! On a serious note though I don't think I'm a match. That pesky blood type thing being an issue and all. I am reminded of the prophetic words of Paula Abdul: "I take--two steps forward, I take--two steps back, We come together cause opposites attract."
I thought we could just get through this initial dialysis training and just be calm for a while. No such luck. In the next week or two we will get the information on how to start the live donor search. If I end up in some spousal organ swapping relationship I am definitely getting a t.v. deal signed first. Maybe Bravo. Maybe HGTV. We could do an organ swap bathroom make over type thing.
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