Punching Stupid and Evil in the Face Since 1986!

"We are on strike, we the men of the mind. We are on strike against self-immolation. We are on strike against the creed of unearned rewards and unrewarded duties."-John Galt

Monday, February 21, 2011

Kidney Update: No bikini for you........AND DONATION INFORMATION

UPDATE: looks like there is more than one Michelle Moore so you may be asked for my birth date-5/9/1970.

(Previous entries: One, Two, Three, Four)

It has been two full weeks since the insertion of the peritoneal dialysis catheter into my abdomen. It's all healed and the stitches came out last week. The Doc says it all looks good.....that's a matter of opinion I suppose, though I realize he means it has healed well. Looking good is a whole other matter:

This is how I keep it taped up under my clothes during the day. That blue and white thing on the end of the tube is a valve. Basically this valve is used to open and close the tubing during the dialysis process.

I just don't see a bikini in my summer this year :) The scars were bad enough, but this......well frankly, it is revolting. It's hard to feel sexy with a garden hose sticking out of your stomach. Yeah, yeah, I know, I'm supposed to only be thankful that I am not dead. Ok. I am.

I've gone into the dialysis center twice now to have the tube flushed out. It is working well. The fluid going into my abdomen doesn't really feel like anything. Maybe it is a little cool but that's about it-though at this point the dialysis nurse puts a little fluid in and lets it drain out. We do this for about a half of a bag. The sensation of it draining out is somewhat painful when it gets to the end. Kelly (my dialysis nurse) tells me this "drain pain" should subside over time. Its not an intolerable pain, but I will be glad when it doesn't hurt any more.

The word on the street is I will begin my dialysis training next Monday 2/28. I will train for a couple of hours everyday that week and then on Friday Kelly will make a home visit to make sure I get my dialysis machine set up all right and that night I will begin home dialysis on my own.

The amount of prep that has to go into actually doing the dialysis is quite extensive. Each night I will have to go through a whole routine before I can even start. There is hand washing, sterilizing, setup and connecting. There is a lot of concern and potential for infection, you know 'cause of the whole tube running directly into your abdomen thing, so there are many precautions that must be taken. Fans must be off, the cat and dog have to be out of the room, masks must be worn......ugh I'm wondering how I get all hooked up and ready, then open the door to my room to let the cat and dog back in. What if I have to pee in the middle of the night?

To be sure my days of staying out late or even having a few drinks are behind me. There is no way I can do all of these steps properly after a couple of beers, nor would I even try-not getting an infection appeals to me. Then, with 8 hours of dialysis every night, I will have to watch my time very carefully-staying in bed past 6 is not often an option for me. Even if I can stay in bed later, I will have to plan when I go to bed so I know when I can get up. There will be no more waking up an getting out of bed simply because I am no longer sleeping. What time is it? How long have I been here? Can I get out of bed or do I have to just lay here for another hour? How about two or three?

The reality of what dialysis will do to my life, how it will change things, is very difficult for me to accept. Seeing the process and going to the dialysis center made it more real than any video I could watch or training I could have. I will continue to live my life, but it will be a life constrained and strained by this stupid disease and it's treatment. It will not be my life as it has always been. I will be living according to what the doctors want and what the schedule dictates. Though I will try not to, I'm afraid I will begin to resent those around me who are not so constrained. Even thinking about all the things I won't be able to do makes me feel incredibly lonely.

Possibly the hardest part in fitting this crap into my life is the fact that I am not incredibly sick. I am glad for that, however most people with this stage of kidney failure would feel terrible. (FUN FACT: do you know stage 5 kidney failure is called ESRD? Once you get under 15% it is just called End Stage Renal Disease. That sounds nice doesn't it.) Maybe they feel like staying home and sleeping all the time. Many of them have diabetes and other illnesses that already limit them. I don't have any of that. I don't feel good all the time to be sure, but I still go to the gym. I still get up early everyday. Most nights I don't sleep more than a few hours, being able to get up and move around has ALWAYS been available to me. Now? Not so much. I like to stay out late with friends from time to time. Even a late movie is out. I just feel so double crossed. If I am that sick why do I feel the same as I always have?

Today I get 30 boxes of supplies delivered to my house. I am right now putting off deciding where I am going to keep that much stuff. Do you have somewhere you could pile up 30 medium size boxes of supplies? It will have to be an area completely dedicated to keeping this stuff because I will now receive this same delivery every month. Good-bye entire part of my house...........

I do have one piece of good news though. I received all my info on going to the transplant center over the weekend. I will go for class and testing on April 25th. I will basically be there all day from 7am to 5pm. The schedule looks like this:

7am-Testing. Including blood tests, chest x-ray, EKG
8am-Pulmonary Testing. This is an exercise test where they have me walk or run to get my heart rate up and then check my heart and lung function.
9:50am-Transplant Education Class. Everything you ever wanted to know about transplant. Potential donors are welcome to attend this class too.
2pm-Physician Interview-Nephrology. This is where they give me a thorough exam, then ask me a bunch of questions to determine if I will qualify for a transplant.
3pm-Social Work Consult. During this meeting they will talk to me about insurance, my costs for the transplant and lifelong medication, and State and Kidney Foundation assistance available to me.


If you are interested in being tested I thank you in advance and God bless you for considering giving me your kidney.

I think that is all I have for you guys today. If I can make myself do it, I will take a pic of all the stuff and put it up later.