Lab Results

So I did get my labs back. And it looks like my creatinine has gone up to 3.7 since July, it was 3.1. A year ago it was 2.1. Also worth mentioning was that for the urinalysis, my protein was +4. For Vitamin D, I was at 10, which strikes me as interesting, since as of late my teeth have been falling out my head. It said that Vitamin D levels are supposed to be between 35 and 100. So pretty much, I'm way off. My hair is in pretty bad shape too.

I just got back from the dentist, and my bill is $1500 for all the work they have to do. And its not like I don't go to the dentist, I've lived at the dentist for the past three years. And he's telling me that we have a lot more shit to do. I got a crown put in today, which to me just looks like an enormous fake tooth. It's all blocky, like a big wooden block in my mouth. What was more depressing is that he had to file away a good tooth to make it fit right, and it still doesn't fit. They want me to pay $500 on Monday, and I have no idea how I'm going to do it. And he's telling me that I have to "commit" to getting the rest of the work done. Which basically means, commit my whole paycheck every month to him. I still have to get two implants, and something else done on the other side. I can't believe I actually have a tooth missing in my mouth because it rotted out. So I'm trying to find out if this is all because of my Vitamin D thing, and if the Vitamin D thing is yet another problem caused by my stupid kidneys.

People have no idea how much my life sucks.

My achy heart

I had a long talk with my husband about this new twist with the polyps. He wants to hold off on the baby thing for now. Wait until I get better. He said it might be a sign that this isn't the right time. I told him that if our baby was here, that we would do everything we could for it, despite the risks, and that our baby is somewhere waiting to come to us, so why wouldn't we work hard, despite the risks now? He said that I wasn't being fair to him, because he is the one that has to be helpless while I go through the hospital stays, and the scares, and the being sick. That I hadn't considered that maybe he wouldn't be able to handle that. Which he is right, which is true. He is so strong, he has a daughter that survived luekemia already, and he deals with those things much better than I would, but I think the prospect of seeing that in our future, and running toward it anyway, is scary for him.

I don't know, I couldn't even cry last night. It's so amazing to me how much my heart aches over all of this. I don't know if in my whole life I have ever been so sad. Its not a targeted pain, its just a overall, everyday gloom in my world. Its crazy. I keep up a good face though. People don't know. Not even my parents. I think my husband is the only one who really knows how much I'm falling apart inside.

I had my meeting with my managers yesterday, and they were just like, er ok. I did leave out the baby part though, but I explained to them that I was sick and that I would probably be running back and forth to the doctors a lot over the next few months. And if I miss meetings, or come late, or leave early, thats why. But I would do my best to NOT miss work. They didn't want to know details, they didn't want to know anything. But my one manager did take that opportunity to announce to us that his wife is pregnant. Ouch. You are so cruel.

I have a lot of hope riding on this meeting with this new specialist tomorrow. I keep googling her name to see her research and case studies. I think if anyone can help me get straight answers, she can. And then I meet with my regular OB GYN to see what to do about these polyps. My husband will be coming with me, so hopefully we can get on the same page, and it won't be me inundating him with second hand info. We'll see what happens.

Hopelessly Optimistic

Yesterday I had a sonogram done. First they did it through my stomach, and then went in with that wand thing. Its dumb, but all the time I was watching the screen thinking that there was going to be a little suprise on there.

When I woke up yesterday morning, I had a splitting headache. It was so bad, I felt like the whole room was spinning around me. I got up anyway, a little earlier than usual actually, since I wanted to catch an earlier train. My stomach was all wonky. But I got in the car and headed to the train station. I made it about halfway, before I had to pull over and vomit on the side of the road. I lost about four minutes with that, but I didn't miss the train. And I didn't lose the last two advils that I took before I left the house! When I got on the train, I had to run to that nasty ass bathroom they have on there too. But by then there was nothing left, and the headache didn't go away.

I came to work feeling like a hot bag of shit, and I think everyone noticed because people kept asking me what was wrong. Actually, in about 15 minutes, I have a meeting with my two managers to explain to the them the situation, sans the baby part of it. I went to have my sonogram done yesterday, and I was gone for two hours, and I missed two meetings! I'm nervous as hell, because I'm afraid I am putting my job in jeopardy, and my future with this company.

So anyway, sonogram. "I'm going to have to get the doctor to come and look at this, it looks like a polyp, and if it is, that could be a deterrent in you getting pregnant." I got my little surprise alright. Did they think I don't have enough deterrents? This burly old man came in, and as sweetly as he could asked me to spread my legs widers, and he put in the whatever its called, duck looking things, and swabbed around me with iodine, and then he snaked this long tube into me, and injected saline solution. "Ohhhh, yep!" he said as the stuff dripped down my bottom, "right there!" Fuck.

I came back to work, 45 minutes before the day was over, with the stuff still running out of me. At least my headache had gone away by that point, and I stopped throwing up. Oh, and it seems that I have only one functioning ovary, she said she couldn't get a good look at the other one, but that it looked really small.

Well, I have this appointment with this new specialist on thursday. So we'll see what she says.

Getting to the bottom of things

Something about the summer makes me always want to write. From the time I was about 9 years old, I've had countless journal and diary entries that begin: "today was my brother's birthday." Indeed, my little brother turned 22 this week. Happy birthday kid!

I have an appointment to meet with a specialist next Thursday. Not that my nephrologist and my OB GYN are not specialists, I love them both. They're the best. My problem is that they both know a lot about their area of interest, but they don't know much about how they relate to each other. This is why I get a lot of "well, I can't promise" and "theres no way to say for sure." This particular specialist has written articles, given lectures, and done plenty of research on pregnancy, hypertension, and CKD. And from what I understand, she has treated plenty of people who have been in my very boat.

Here's what I plan to ask her.

• What is making it difficult for me to get pregnant now?
• What happens if I have kidney failure during pregnancy?
• Where am I in the range of risk based on my lab results?
• Will I be able to get matched for a donor during pregnancy?
• Would there be any reason why I couldn't skip dialysis and go straight to transplant?
• What is the prelimenary process for deciding to transplant?
• What are the specific dangers to the baby?
• How soon are we able to determine how/if the baby is effected?
• What is the deciding factor of if and when I need to go on bed rest?
• Are my hair, teeth and skin effected by my loss of kidney function?

I think thats it for now. If I think of anything else, I'll add it later.

Toodles!

Friday night and the weekends here...

Ok, actually its Sunday night, and back to work tomorrow. I tried to do some relaxing this weekend, hung out and have some fun. I actually went to the club last night and had a drink even though I had promised myself that I would stop drinking. No, I'm not an alcoholic or anything. I'm not even really a heavy drinker, although I do tend to have too much when I go out. I just so happen to know that the liquor makes my blood pressure go up... is that how you spell liquor? Anyway, I've been out a couple times, and had nothing but cranberry juice and water, and maybe seltzer sometimes. And I was having fun, but last night people kept on offering me drinks, MAD people just kept asking! And I was not having a goof time at all, and I was feeling very much in need of a good time. So I figured Iwould make an exception and have a drink. Amaretto sour, and it wasn't the breath of fresh air that I thought it would be. It didnt even loosen me up to be disillusioned into having a good time. I was just tired faster, and ready to go home. As it was, my friend I was with DID enjoy her drinks, and apparently had a blast. It was her birthday.

Who knows, I'm 26, but maybe I am starting to out grow the whole club thing. I feel like the loud music and crowds, and just dancing my ass off is the biggest release for me, but I don't seem to get that anymore. I need to find a new release, whatever that will be, everybody needs one, no?

Not a wink

I work for an ad agency on madison ave in mid-town Manhattan. And i live in the beautiful mountains of the Hudson Valley. It takes me exactly three hours door to door to get to work every day. Thats twenty minutes to drive to the train, 2 hours on the train, 15 minutes on the path (subway) and about 20 minutes of walking. How much is that? Ok, 2 hours and 55 minutes, but usually its give or take. I know its insane, people tell me so every time the question comes up.

"Where do you live?" I inevitably get asked every day. "Do you know where Woodbury Commons is?" I say. Usually people in NY have heard of this enormous shopping outlet. "Well I'm about 40 minutes north of there." That usually incites the reaction, expletives, reprimands, and the "are you crazy??"s. Its funny, because people flip out every time, and its entertaining. The truth is, it DOES suck getting up so early, and having such a long day. I leave at 6 am and usually get back home at about 9 pm. But the thing is, to me it doesn't suck any more than working, period. I like working, I like having a job, and I like having a real job with real benefits where they don't write you up for not wearing a uniform, or certain color shoes. I like it that I'm at work right now, and I'm sitting here blogging. Yes its a long ass commute, but it beats the hell out of sitting at home doing nothing, or working at Olive Garden.

The trouble is that the fatigue that comes along with low kidney function makes things really tough. Sometimes I have to pep talk myself into getting off the train after the two hour ride. Most of the time, I just want to sit there. And if you could hear my mind speaking during the 10-12 block walk, you would hear "left foot, right foot, left foot right foot, c'mon you can do it, left foot...." And then I get to work, and I wish I could just tell the people here, no I'm not blonde, I'm not a ditz, I really am a smart girl, and I can really do well here, I'm just so effing tired! But no one here knows anything about my health, outside of the fact that it takes a long time to get to work. So I don't say anything, I just keep pushing myself to work harder and do better. So far, I don't think my evaluation will say "outstanding." But I think I am holding my own.

I remember when I was in college, and I was living with my boyfriend - now my husband - and my car broke down. I had no way to get to class everyday, so I was waiting for my father to come and pick me up from a half hour away, and then driving me another half hour to school. He was ALWAYS late. And I felt like the biggest asshole walking into class every after it was half over. One day I came in after everyone was leaving from a mid-term exam. I wanted to cry. My teacher, who was also my advisor, let me take the test, and when I was done, he and I were the only ones still on the room. He told me, very lovingly, that because of the fact that I was a woman, AND an African American, I was never going to be able to succeed in life giving as much effort as others might. I would always have to do more than every one else, just to get to where every one else was. And I thought, if he only knew what I had to go through, just to get to class every day, its not even close to what even other black women have to do. But I think from that point I realized, that no matter what my obstacles were, they could not be an excuse to not be where I wanted to be. I had to work as hard as I needed to, no matter how hard that was, and being "sick" or tired, or living far, or being broke could not be a reason to not be the best, or try to be the best. You get a promotion for doing good work, not because people feel sorry for you. So maybe its a good attitude, or maybe its a bad attitude, "but in the end, it doesn't even matter," to quote one of my favorite songs.

So anyway, I say ALL of that to say, that usually during the train ride, I sleep my ass off. I'm talking coma, neck breaking, mouth open, sci fi dreaming, dead to the world sleep. And today, I didn't sleep a wink. My period is officially late.