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.

Beer Drinking

I'm a beer drinker. It seems like I always have been. There's nothing better than an icy cold beer on a hot day...or a Sunday afternoon...or after a long day. Anyhow, with this disease, I guess my kidneys just aren't processing the waste products out of my body fast enough for me to drink as much as I used to. And I'm not talking about a lot. Today, I went out for breakfast, like we typically do on a Sunday morning. Then I went shoe shopping and when I came home, I thought I'd download some new music and drink a beer. Literally halfway through that beer, I was already feeling loopy. By the time I was done with that one bottle of Coors Light, I felt very disoriented. I would call it drunk, but somehow it's different than being drunk. It's more mind boggling -- I mean literally -- my head feels scrambled. It's kind of cool. :-) Anyhow, I'm gonna drink another and then take a long hot bubble bath. That's a good Sunday.

UTI and my realization

So it started this morning -- a urinary tract infection. Sometimes I get them and they usually come on slow. I drink a lot of water to sort-of wash it away. And it usually works, but this one was crazy fast moving. Luckily, my doctor understands that I know the symptoms and she trusts me. She called in a script for me and I didn't even have to go to the lab. I'm feeling better, but am extremely tired and I have tummy ache from the antibiotics. They really take UTIs seriously when you have kidney disease and put you on a strong antibiotic -- cipro. I should go to bed, but something makes me want to stay up...

I had this realization a few minutes ago...I am going to get a kidney transplant. It's crazy. It's like this thing that hits you suddenly. Was I really ready when I said that I was ready a while back? How can you ever really be ready? It's kind of like when I have to do something I don't really want to do...like this summer I really didn't want to go to this conference. My tactic was to not think about it. I know, I sound like Scarlett O'Hara, but really, I just didn't think about it. On the way to the airport, I started to feel a little more anxious. That's how it works -- you just don't think about until it's right in front of you. I've done it over and over. I've done it for every other medical procedure I've had. There must not be any way you can prepare your self for such a thing. I've tried telling people, but that doesn't make it any more real. I've tried writing about it, but the realization just continues to come and go. I've tried learning about it and that was the most helpful. I felt the most control when I learned as much as I could. I watched an entire kidney transplant surgery online. Really!

I *am* going to get a kidney transplant. I've done all the preparation I can do. Nothing further will help me prepare. I just have to keep waiting. There is no way to make it real...you just live your "normal" life while the numbers on the lab results change. The illness doesn't make me a different person. I am the same person, with the same petty concerns. No monumental emotional change is going to happen and make me feel different or to come to any significant realization or state of being.

I'm tired and I'm going to bed. I think I stay up late because then I'm completely exhausted so I fall asleep quickly. Hopefully, that will work for me again tonight.

Creatinine Chart

I thought you might like to see my creatinine chart. This is all the data I have so far, but I'd really like to have older/earlier lab results. My doctor said I should plot 1/creatinine# . She also indicated that we'd schedule my surgery when my creatinine gets to a 5.0. I'm around a 4.4 now, but we'll see what my October lab results say.

Here is the chart:












Here is the table:

date	creatinine
11/5/2005	2.1
8/15/2006	3.1
8/22/2006	3
10/11/2006	3.2
12/6/2006	3.4
1/5/2007	3.6
3/8/2007	4.1
4/6/2007	3.9
5/4/2007	4.3
7/11/2007	4.4
8/14/2007	4.4
9/14/2007	4.9
10/14/2007	0
11/14/2007	0
12/14/2007	0
1/14/2008	0
2/14/2008	0