How Am I?

I have good days and not so great days. Mostly, I think this experience has changed me for the better. I think I’m a lot stronger and a lot more at ease with life in general. But, at times it strikes me that this is actually going to happen and I get really frightened. Last Tuesday was a rough day, but I had a lot of meetings so I was able to keep my mind busy.

I have to make myself eat because I just don’t feel like it. My body says it’s hungry, but I just don’t care. I don’t have much desire to eat it and it doesn’t taste good. Therefore, I eat stuff that tastes good, but is probably not very good for me, e.g. donuts, candy. Sometimes I get to a point where I wish someone could just put their arms around me and stop time…that all this would go away.

Still Not Sick

I find it really difficult to believe I'm going to have a kidney transplant in less than 1 month. I feel fine most days. the worst "symptom" I'm experiencing is fatigue. I don't have pain. My latest labs from Friday show a creatinine of 5.4.

I'm having a difficult time concentrating at work. I have been working short days -- leaving to take naps in the evenings. I don't feel bad about it because, hell, I'm sick even if I don't feel more typical symptoms associated with illness. They can deal with it.

I'm okay

I'm okay these days. I'm just waiting. I wonder what it will be like AFTER the transplant given that's been such a large part of my life. II would imagine some people get tired of me talking about it. I don't talk about it to a lot of people, but it tends to be the first thing on my mind so...naturally, I talk about it.

Last night I went to the bar and drank a white russian. I started drinking these recently because I have a lot of problems with my stomach. Maybe that's a symptom, maybe it's just the stress, but I have been getting heartburn and upset stomach a lot in the last 6 months. I even take one of those over the counter heartburn pills and I have to supplement with tums here and there, too. Anyhow, we ate mexican food last night and then went to the bar. I started feeling sick after I finished my drink. Maybe it was the mild. Maybe my body just can't take the alcohol any more. I switched to O' Douls, but it still didn't feel better. I've been sick most of the day today. it's mild, just an upset tummy and weakness. It didn't stop me from going in to have my tattoo enhanced. It needed some touch-ups. Looks good.

When I first got my surgery date, I went through a period of fear and then some sadness here and there, but mostly I'm okay. I'm not saying I want the surgery. Hell, I'd like to be perfectly healthy or to at least wait another year or two or three...lol. But I know it has to happen so I'm preparing the best I can.

Iron infusions AND anger

I have been going all week to the medical center for iron infusions. Previously, when I had infusions, I had to sit for 2 hours waiting for it to finish. And it was just 3 days in a row. This time it was 5 days in a row and only took 40 mins a session. I think I prefer the longer sessions over 3 days. I managed to convince them to stick me fresh everyday rather than leave in the needle. I don't mind the needle 5 days in a row, but I do mind having to maneuver around with a needle taped into my arm. It makes showering and changing clothes a real pain.

I'm finding myself being kind of angry lately and I don't like it. This morning I lost it a little when the cat was hiding from me in the spare room and I couldn't get her out. The cats aren't allowed in the spare room during the day, but in the mornings I open that room because I need the iron and the TV. Anyhow, she wouldn't come out and I got angry and yelled at her. Scared the crap out of her...she ran to the bedroom and hid under the bed. Then, my transplant coordinator is supposed to send me a doctor's leave note, but I still haven't received it. I asked her for it last Monday and her response was "remind me if you don't have it by Thursday." Of course, I had to remind her on Thursday and then I got..."we're in meetings all afternoon, so I'll have the doctor sign it then and fax it to you." Still nothing today-Monday. I sent another request for it this morning. It's situations like this that make me want to call and yell at her to just fucking fax the damn letter!

Other than being easily angered, I am tired. I fall asleep on the couch all the time and I sleep in every morning. I now come to work by 9am rather than 8am because I just can't get up in the morning. It's an inconvenience more than anything else -- don't get me wrong, I'm not complaining, just telling you how it is.

Surgery Date

December 7th!

Scheduling .. No Focus ...

At my latest check-up last week, my nephrologist told me it's about time to schedule my surgery. She recommended we schedule no more than 8 weeks from now. She said the transplant office would jump on it and get me scheduled quickly, but I still hadn't heard anything as of today - a week after my check-up. I would let it go, but I figure I need to begin planning for my family to fly out here. They'll need to make arrangements for vacation time and book flights. I suspect flights will be difficult to book around that time...late November/early December. I also worry that I won't be able to find a hotel room in a nice hotel near the hospital for my cousin's family.

I called the transplant center yesterday. Of course, my transplant coordinator wasn't in the office at 4:15. I guess she works the early shift. So I waited until 2:30 p.m. today. When I got her on the phone she said she was gonna call me...and that she was waiting on some financial paper to be confirmed before she scheduled my surgery. Which I think is complete bullshit because the insurance company already approved everything in order for me to get on the damn transplant list in the first place. I suspect she's making excuses for not calling me. She said she'd call me as soon as she heard back from the "financial guy." Whatever. I'm calling her again tomorrow.

It's been a difficult week. Part of me is relieved and part of me is terrified that it's actually happening - I'll have a kidney transplant in 6 weeks. I am super stressed at work and I sometimes feel as though I'm barely holding things together. I lose my temper with people and get upset about things that shouldn't bother me that much. I find it's difficult to focus and yet, I have no choice but to focus because of the software implementation I am coordinating. I need to get it into some semblance of functionality before I leave for surgery. I want people to know that there is something creating additional stress that may be interfering with my performance and behavior, but I also don't want to draw a lot of attention to myself.

I wish I was independently wealthy so I could take a long leave of absence starting right now. I don't want to deal with the career crap right now when all I can think about is getting it out of the way in order to focus on my health.

I Can't Sleep #2

Well, here I am again. I went to bed an hour ago and, well, I really thought I was going to fall asleep this time. I figure an hour is a pretty good try. I have read that insomnia is a symptom or complication of end stage renal failure (1,2.) Who wouldn't suffer a little bit of sleep loss in my situation. You get tired of waiting. At least I know I will have a kidney donor when I need one. It could be worse. I could be on a list waiting. Hopefully, talking to everyone under the sun about my transplant may help raise awareness of the need for additional living donors.

I'm going to try to get some sleep now.