Wednesday, February 1, 2012

Still waiting... but hopeful!

Here I am again. I found my first blog last night and I though maybe I should blog a bit more than I actually do, so here goes -Here it is, 2012 and I'm still on dialysis, and have been for more than 4 years. Last year, I switched from going to dialysis during the day to Satellite Dialysis' Nocternal Program. I get there about 8:30pm and am on by 9:00pm. I am there for eight hours while the machine does all the work and I get to sleep. I'm done about 5:00am. I usually go home and get a few hours more sleep, then I have the rest of the day, the evening and all the next day to do what I want. I never thought I'd like eight hours on the infernal machine, but it really fits my needs! And, nocternal dialysis is much slower and easier on the heart. It certainly is NOT as bad as it sounds. My life is pretty much normal. A friend of mine asked me how I stay so positive with the health problems I have. It's easy. I tried it the negative way and I really DID NOT like the way I was. I was surly, mean and yes, snotty. People tried to be nice and kind, however, I had a chip on my shoulder and a glare in my eyes that frightened most people away. That was Mean Mary Jane. While I was at an appointment with my Neprologist ad Kaiser my doctor and I finished our visit and then he got serious. He said, "Mary you have GOT to change your ways. You can't treat people the way you do. They simply don't have to put up with it. We want the Old Mary Jane back." Needless to say, I was mortified and very angry at the man who had carried me through so much. I remember walking out to my car and thinking, " He can't treat me that way!" When I got to my car, I was in tears, because I realized that Dr. Muldowney was right. I had to make changes. So I did. I commited murder. I killed Mean Mary Jane and started to create a new, better one. I remember waking up a day or so later. It is my usual habit to pray morning and night. As my grandmother Zora Gray said, "Prayer is the lock at night and the key to morning." She was a very wise soul. In my prayer, I told my Father in Heaven that I was determined to be happy. I said that even if I have to paste a smile on my face, I was going to be happy. I have had too many years of waking up with a lead balloon in my chest, and that I wanted it gone. I was going to be happy even if I had to fake it every day for a year. I didn't have to wait that long; I felt better immediately. No lead balloon, no feelings of hoplessness or fear. I became a new Mary Jane. I have to add here that I was on prednisone (steroid) for 30 years, and was able to wean my self off of it. Prednisone is a horrible, but necessary evil, that alters moods and causes extreme weight gains. I don't know what is worse - prednisone or being on dialysis long term. I know that I want to be able to go places and do things, and I seriously had to consider the consequences of taking it again. My attitude changed around the time that I stopped taking it. I dread going on it again, but I know the warning signs and I just have to fight it hard this time. So, back to why I am so positive. I'm positive because I can see what being snotty can do to those I love, and I don't want to ever want to do that again to anyone. That's #1. #2 I've seen what being a diabetic and on dialysis can do, and I don't want the same to happen to me. Every time I go to dialysis I'm reminded when I see lost limbs, eyes, and other awful maladies. I dialyzed near a man whose name was Walter. He was grumpy and had a tendency to embarrass the techs who work so hard for us. He had multiple problems - one leg gone at mid-calf and the other one just below the knee. He also had one eye missing. He had scabs all over his arms. and he smelled awful. The sad part about this was that Walter did these awful things to himself by not taking the medicine prescribed. He had just given up on himself. When I was dialyzing during the day, he had a chair near me. I decided to to a little test. I walked by him one morning and said, "Hey Walter. Hows it going?" He looked at me kind of surprised and said that he was good. I did it the next day and the next day after that. He was actually nice to me. I had a hard time with any sort of conversation with him because it felt like I had to drag words out of him. I made more progress than most people. When I transferred to the nocternal program, I figured I'd probably lose contact with Walter. He ended up transferring to the night dialysis a few weeks later. Once again, I would say hello to him, but couldn't really coax much out of him. I would keep up on his progress through my nurse, Maria. She would update me on his progress - or lack of. One morning I was asleep at dialysis when I heard a loud "Hey!" It was Walter. He had wheeled himself to where I was (by the back door, so I'm assuming he was waiting for his ride). Again, the conversation was limited. I sensed that he was a very lonely man and the attention I gave him was about all he got. Sad. I saw him off and on after that. I hadn't seen Walter for a few weeks so I asked nurse Maria about him. She said that she was sorry and that Walter had passed away. I felt bad for him. He had basically committed a very slow suicide. Such a waste.

That's all for now. Catch you later... MJ

Saturday, February 13, 2010

I know it sounds strange, but it's true! I am on the waiting list for a kidney transplant and seeing as how I've already had two transplants, another one will make 5 kidneys total. I always was unique.

I went to my doctor yesterday and had a good visit. Nothing wrong, chemistries great, no infections, and no weight gains (thank goodness on all counts!) He asked me about getting a transplant and almost immediately said that he has several patients who have gotten kidneys from their church members. He said, "Giving a kidney to someone is like getting a Fast Pass into Heaven." I had thought about it before and figured that I wouldn't want to put anyone through the surgery. He assured me that it's all done laparascopically(sp?) now and the whole procedure keeps the donor in the hospital for about 2 days and back to work in 5. When my sister, Carol, gave me one of her kidneys, she was in over a week and off work for 5 more weeks, with a HUGE painful incision. Guess science and medicine have been hard at work since my first transplant in 1977. I wish I had the courage to ask if there are any donors out there, but I still have a problem with taking SO much from someone. That's a lot to ask.

Anyway, I'm glad the doc is happy with my progress so far. I got so sick with stupid infections in the past that not having any for the past year or so has been a pleasure. Nothing gets me down more than an emergency trip to the ER.

I always tell people that dialysis is more of an inconvenience than anything else. I have to sit there for 3 hours 15 minutes three times a week and that's really hard for squirmy MJ to handle. I go early in the AM (on time 7:30) so I can actually fall asleep for part of most of the run. I was telling my doctor yesterday that I'm thankful for what health I have, because I see other patients who are blind or missing limbs because of their health issues. Having Diabetes as well makes me aware that it could be me in the wheelchair. I think about that every time I go to get icecream. You have to be aware constantly of where your blood sugar is at.

When my last kidney failed (2+ years ago), I got taken off most of my transplant medications. No need for them any longer. The docs said that it might be difficult getting off Prednisone (nasty steroids) but they told me I could try by very slowly tapering off. Well, I did manage to wean myself off without any difficulties and actually got completely off the medication. A nice little benefit to that is I started to drop copious amounts of weight. I'd go in to weigh at dialysis and be down another 1/2 kilo or so (about a pound). This happened for several months causing me to go from 303 pounds (yikes, even seeing that number makes me shiver!) to around 230 or about a 70 pound weight loss. I'm in Heaven! UC Medical Center (where they have done my transplants in the past and will be doing my next one), asked me to drop 70 pounds before they would do the surgery. I lost the 70, but when I called them, their baseline was different than mine so the Coordinator told me that I needed to lose another 20. Not an easy task now that my body has stopped dropping weight. Guess I'll just have to knuckle down and do it.

That's all for now. Just wanted to get some thoughts down. Next time...