I'm don't want to be a sick person

But I guess it's too damn bad because I am sick. I feel like such a fool. I know she must have told me about the significance of my creatinine, but for some reason, it didn't click in my mind. As my number has increased steadily over the last few months, I kept thinking I still had more room, more time. Not so. The news is that she (my nephrologist) wants me to get signed up to a transplant program. What the hell. I went from thinking I would last until I was 40 to this--transplant time. Initially it's too overwhelming to consider it all. I have been keeping busy for the last 3 days. wondering how I can deal with this so soon. I really wasn't prepared for her to tell me that I needed to get on a transplant list. That was something I was expecting not to hear for another decade. I don't know how I fooled myself, but I did. the thing is that I just don't feel any different. I feel well. I have no symptoms. Well, other than the anemia and high blood pressure (which are both under control.) I was so angry when she told me...then it struck me that she was really sitting there in front of me tell me *I* had to get on a transplant list. This was the meeting I had feared for so long. All I could do was curse and cry. It is so unfair to have a genetic disease. I have done everything I could to be as healthy as possible, but to no avail. I am stuck with damn kidney failure anyhow. Fuck, fuck, fuck.

Then I walked around for the next 3 days in a haze. Not really focused on work. Not really focused on my predicament. I have been keeping busy. I actually went to the gym after my doctor's appointment. The only major difference in my behavior has been a greater willingness to put an end to bullshit around me -- less patience for the bullshit. I actually told some people to get off the machines at the gym because there is a 20 minute limit when people are waiting. I walked right in front of them and looked them both in the eyes while I said "There's a 20 minute limit." They really didn't know what to think. Maybe that's just me taking out my frustration on others -- it's probably not good. Another thing is that I have just started to cry here and there uncontrollably. Not sobbing or anything, just a little weeping. Usually, it strikes me when I'm driving alone in the car. Otherwise, I keep busy.

What can you do anyhow? Not much. But I do wonder, should I tell my family? My husband knows and he's been pretty upset about it. He said to me tonight that he just couldn't bear losing me. He has been really upset by this. I find myself being more angry than anything else. I hit the dryer tonight for no reason -- it just felt good to hit something over and over and over -- I thought I might have fractured my hand, but it's okay now. In any case, I don't really want to deal with the reactions of other people. I'm having a hard enough time dealing with my own feelings, much less helping my husband cope or anyone else for that matter. That's why I don't want to tell my family. I don't need the pity. I don't want them to feel sorry for themselves because I have this illness. I don't want them to tell others and get pity for themselves, or for me because I have this illness. I don't want to be a sick person. Did I mention that?

Not to mention the fact that I don't want someone to cut my body open. I don't want another person's kidney in my body. I don't want to be at greater risk of other diseases -- I don't want to take handfuls of pills every day for the rest of my life. I don't want to be a sick person. I don't want to worry about taking vacation because "something might happen" and I need to be near my doctor. I don't want to trust a bunch of medical idiots with my life. I don't want my family to come out here and look at me in *that* way. I don't want to take steroids forever -- what the hell side effects do you get from those? I should look into it, but then again, do I really want to know? Will I get fat and hairy? "Maybe so, dear, but at least you'll be alive." Just what you want to tell a woman in her prime.

I wonder about telling my family because I might need a kidney from one of them. But who? One sister isn't in the kind of shape you'd want someone to be in to donate a kidney. She's asthmatic and overweight. My mother is probably too old and not in great shape either. That's about it. Aunts, cousins, and more distant relatives I'm not close to. What about my friends? Would they give me a kidney? My husband said he would, but would my close friends make such a sacrifice? My closest friends aren't currently living in the U.S. Would hey come back for this? Would I want them to come back?

I'm just not ready to tell anyone yet.

Rapamycin PKD trial

So I got a message from a nurse at the Cleveland Clinic working with the Rapamycin PKD trial. Of course, I told her I was still interested. In response, she wanted some additional information. I suspect the only important piece of information for her was my creatinine level, but she threw in questions about whether other family members had PKD or other serious illnesses. I figured, with a 4.1 creatinine, I'd be a perfect candidate. It's obvious my PKD is progressing so wouldn't I be a perfect candidate for a trial to halt the progression of cyst growth? Also, it does run in my family. My dad's kidneys failed in his late 30s and one of my siblings has PKD (non symptomatic -- lucky! (think Napoleon Dynamite.) Her very quick response said "Thank you for your response. Unfortunately your creatinine is too high.
I will keep your name should any other study begins." Too high? How is that supposed to make me feel? Maybe somebody isn't being straight with me. Maybe this damn illness is more advanced than I imagine. I feel fine. I feel great. I've never felt better in my life. I work out regularly and take good care of myself. Really, I just don't know what to think. I wonder what the max creatinine count is that they'll accept? What if the trial had taken place last year when I was still in the 3-4 range? Hell, that's a waste of my time to consider. It isn't last year after all, it's this year and I'm fucked out of that trial. Damn this genetic disorder. Damn my parents for not knowing this ran in the family and not having children. Well, okay, don't damn my parents. I could detele that and none of you all would know that I said such an awful thing, but there it is. I'm not taking it back. That's how I actually feel sometimes. What the use in knowing that I have this damn disease if I can't to anything to prevent it? Does all the working out and being a vegetarian and cutting back on caffeine make any difference at ALL? Does knowing from an early age that I have PKD increase the likelihood that I'll have kidney failure? I mean, you read about those studies concerning stress and illness. Do the negative thoughts and fears related to knowing have an impact on the progression of the disease? It would be different if heart disease ran in my family -- you can do something about that to increase your chances of a long, healthy life. But PKD? You really can't do much.

One good thing is that I chose not to have children. That decision was not largely due to the PKD, but that was a factor. Also, my sibling with PKD didn't have kids. At least we stopped the defective gene. Hopefully, my cousins don't also have it. Most of them are my age or older and there have been no signs of the illness thus far.

started to lose it today

I spoke with my doctor on the phone today. She said to begin taking the Aranesp every 3 weeks. That 60 mcg every 3 weeks instead of 2 weeks. Looks like my anemia is now under control. She was curious about my blood pressure. It's been fine. Then she said, again, that my creatinine is at 4.1. There was something in her voice when she said it...a pause or tone... a sort of intonation that implied concern. Usually, she's a pretty good "poker face" and I have a difficult time reading her, but not so much today. That was the worst feeling, really.

What's particularly odd about being in this situation is that I want to talk about the illness, but I don't want to talk about it with people close to me. Like my husband or my good friends, famliy. I guess it's because I don't want them to feel sorry for me. I don't want them to think I'm talking about it because I'm falling apart -- or that I need them to say something optimistic. Overall, the conversation is probably uncomfortable for them anyhow, so I just dump my thoughts in this blog.

The reality of my situation struck me after I hung up the phone with my doctor. She could sense that I was feeling concern. She said not to worry ... "That's my job. " It's a genetic disease I can do nothing about and so on...

But when I hung up the phone, I just put my head down on my desk and sat quietly. Tears actually started in and I thought "don't feel sorry for yourself." You have a long way to go with these kidneys and as far as you know, they will be fine. Goddamn it all, it makes me angry, too. There must be something more I could be doing. Then I pulled it together to go to a meeting.

Do you want the good news or....

My doctor called me back yesterday. Although she didn't get me on the phone, she did leave a message that my hemoglobin is up to 11.8! That's the good news. Not surprisingly, however, my creatinine is up to 4.1. I called her back right away, but missed her again. Can you believe in this day and age, in Southern California no less, I can directly call my doctor? She's the greatest. One night she called me back from her home -- I knew because I could hear the dog and I heard someone come home while we were on the phone. This person yelled "I'm home" when coming in the house. funny stuff. She explains everything to me with patience and honesty. I think she sees that my progressive disease is progressing and doesn't want to stress me out too much. She indicated on the phone message that she's interested in hearing what my blood pressure is -- I checked this morning and it's good: 128/88.

more later

Back to reality

I have been feeling strong for a while now. It's bound to come raring back and it did today. Overall, things are really not bad at all, but I'm finding it's difficult to stick to my healthy regiman. For example, I'm back to drinking a beer pretty much every day with dinner. At least it's a light beer. I haven't been so sleepy so it appears that the Aranesp is working. Tomorrow I get another shot. But today I have been having flank pain. Sometimes I think about making up some shit in this blog -- shit about how healthy I am and such, but honestly, I struggle to stick with being healthy everyday. Some days are better than others. Otherall, I think I do better than the average person in the U.S., but I don't think I do well enough for someone who is fighting a progressive disease.

I took a hot bath to relieve some of the pain. It helps. Earlier today I was beginning to get a headache. I had one earlier this week, too. I decided to take an Aleve. Sometimes I wonder if those pills are just too much for my kidneys to handle. I mean, what if that's why I am having kidney pain now?

I went for a blood test today. The doctor says that when my iron begins to improve from the Aranasp, it will bounce back quickly. After 1 month, it had only gone up 0.1. Now it's been over 2 months so I'll let you all know. Unfortunately, they'll get my creatinine, too. I don't look forward to seeing that number increase AGAIN.

Also, in case you're wondering, I have not been drinking the wheatgrass every day. That lasted about 7 days. Really. I spent $250 on a wonderful, top of the line juicer and I've only used it about 7 times. I need to get wheatgrass at the health food market and get into the groove.

I haven't been going to the gym as much as usual for the last 2 weeks. The first week was due to the fact that I had a big test in my class and was studying after work rather than going to the gym. The second week, we had company. So this week I've only been once and it's already thursday. I was going to go tonight, but here I sit on the couch. I left work early to go for a blood test. I had hoped to get to a 5:30 spin class. No such luck. then I confinced myself that with the back pain, I probably shouldn't go to the gym. Maybe so, maybe so. I hope to run on the treadmill later if I'm feeling like it. In the meantime, I'm trying not to crack open a beer. I could always run after a single light beer though...right? In any case, now it's 7:15 and I haven't worked out nor have I opened a book. Real productive.

I'm going to try to get my ass in gear.