I finally got out of bed at 4 AM this morning because I just couldn't breathe anymore. Partially laying/sitting up did no good, I had to actually be completely vertical to breathe. I felt miserable. I weighed myself and I was 50.5 kilos (3.5 kilos over dry weight). I couldn't go back to bed so I took a long time getting ready to go to my treatment. As it was, since I could hardly breathe, it would've taken me that long, anyway. The charge nurse took one look at me as I dragged myself into the unit and went scurrying off for the oxygen machine. It was a good thing, too, because I was about to beg someone for some air. We pulled off 4 kilos of fluid, and other than feeling as if a truck had hit me, I didn't have any bad side effects. I came home and have been sleeping the rest of the day. And this the day before I'm having surgery. Yay. Yes, ok, so now I know when I should go to the hospital - and it should have been Saturday night or Sunday morning. I swear I hope I never have to go through that again.

Bah. I'm overloaded on fluid since last night. I hate my stupid kidneys... sometimes they work and sometimes they don't. They would pick a weekend to not work more than work. Yes, its nice that I still pee, but no, its not nice that my kidney function is so inconsistent. Bah. Shortness of breath (fluid in lungs), headache and high BP, the works. 3 solid kilos over my dry weight (this morning early I was actually 3.5 over, so its gone down just a *tad*) and I haven't had more than a few sips today. 3 kilos to some of you might not seem like much, but for someone who's dry weight is 47 kilos, adding 3 more is a LOT. (Conversion for those of you who don't know kilos - my dry weight is usually 103.4 pounds, adding 3 kilos of JUST FLUID is nearly 7 pounds of extra water that goes no where but sit in my lungs and make me drown!) Ugh. I'm miserable. And I know I did it to myself... and just after I got done saying I was doing so well with my fluid restrictions. Does anyone have any advice as to when it would be necessary to go to the hospital when in fluid overload? Has anyone ever had to do this? I've never felt seriously lightheaded from the shortness of breath or anything else that seemed alarming... but, I don't really know when I should take a hike to the 'ol emergency room.

Monday was monthly labs. They sort of sneaked up on me this month. Usually I try to stick closely to my renal diet the weekend before labs but this time I didn't. The good news is my potassium remains steady and within normal ranges. I'm pretty much eating what I want for potassium and will continue to do so until it starts inching up. Also good is that I'm doing fairly well with my fluid restrictions. I don't usually have to have more than 1.5 kilos of actual fluid removed for each treatment (not counting rinse-back.) The bad news is it looks like I'm really going to have to start taking phosphorous binders now. Bleck. My phosphorous was high - 6.0, not bad for ESRD, but, not normal, either (2.5 - 4.5) Once or twice its been a few tenths higher than 'normal', but this is the first time that its been high enough for me alarm. My calcium was low, too, indicating that the time has really come. Oh well, whats swallowing another 9 or so pills a day? On the anemia front, more bad news: my hematocrit (which is checked weekly) has been on the down and down lately. I'm not sure why its going down like it is, because they have doubled and tripled my dose of EPO each week. It does take a LONG time for my body to respond to EPO (longer than anyone else I know) but this is sort of weird. I've been full-on anemic (i.e. hematocrit less than 37) for over six weeks. Instead of inching up with the additional EPO, or staying steady, it keeps dropping. I'm down to 28.6, and have been really feeling the side-effects that come with anemia. I've been doing a lot of sleeping lately, but, the worst for me is feeling achy all over, like a big giant bruise. Speaking of bruises, when I'm this anemic I bruise very easily. I have ugly bruises all over my body from the silliest little things that I'm certain wouldn't normally cause bruising... Have you ever known anyone who could stub their toes while standing still? Well, now you know one. I smacked my pinky toe into a door last night and now its BLACK AND BLUE and boy, does it hurt. It could be broken for all I know.

I bought Popsicles for the kids, and now its as if they're burning a hole in my freezer to get out and make me eat them. EAT US EAT US, they scream, WE ARE COOL AND YUMMY AND WE PROMISE NOT TO TELL ANYONE ABOUT YOUR FLUID RESRTRICTION... YOU CAN JUST PRETEND WE DON'T COUNT... I usually don't even care about such things, but MAN do cherry Popsicles taste good when its hot outside!

Today I got an email from my cousin Casey. We haven't seen eachother in nearly 11 years, although we remain very close at heart. Still, emails like this are humbling... and they make me feel LOVED.

Hello cuz, How the heck are you doing? Are you planning on coming up here- I'd like to see ya. Crystal and I just got back from a state Eagles convention yesterday. It was a wonderful week, meeting new people and learning of all the charities the Eagles support as a nonprofit organization. This is going to be a stupid question that I should know, but what is the name of your Kidney disease? I would like to know because I wanted to check and see if the Eagles contributes any money towards it or if not Crystal and I could start a fund raiser for it and the people it affects. Let me know how you feel about this and drop me a line. I suppose I had better get back to work. Love ya, Casey

*sigh* I wish I lived in Wyoming or Utah so we could see each other more often... Consequently, we have the same blood type... if I ever considered getting a transplant I just might let him get tested to see if he matched...

I saw my vascular surgeon today. I am going to have a slight fistula revision on Tues the 29th. The surgery will be to tie off an extra vein that stems from my fistula. The extra vein causes infiltrations and aneurysms whenever the fistula is used within an inch above and below where the vein stems off. It has been causing this problem since literally my first treatment, and it limits the amount of vein that can be used on my actual fistula. It should be a very easy outpatient surgery, I probably won't be in the hospital more than a few hours. Of course the MAC anesthesia will knock me out for two days, but who cares, I tolerate it well. I still have an ear infection and can't hear anything out of my right ear. It is beyond annoying at this point...

So, my nephro put me on a different antibiotic - Cipro. I've only taken one dose (you only take it once per day) but, somehow I feel better. My ear is still all plugged up, but its not hurting anymore. My head feels clearer and I overall feel like I might finally be on the mend. However, all I'm motivated to do today is sleep. I got up early this morning and took my son to school and then came straight back to bed... slept until noon. Got up, ate a sandwhich while hanging out here in LJ and now I feel like a nap. Its a restful kind of sleep... I feel like I haven't really slept good in a very long time. Maybe its my body finally recovering from this bug.

My ear infection seemed to be going away, but today it is back with a vengence. My ear is hurting and it feels all filled up with fluid. The "swimmer's ear" feeling never went completely away, but it was much, much better than last week. I think it goes without saying that I must be on the wrong antibiotics. I'm sick and tired of being sick and tired.

I woke up this morning with a searing pain in my right ear. I knew right away that it was an ear infection. I had one about 5 years ago, and many when I was 3-4 years old, and one never forgets the pain. Oh yes, and the lack of hearing in that ear is a good indicator, too. After dropping my son off at school I took myself over to a new walk-in clinic near my house that I've been keeping in mind for just such occasion. I didn't want to waste time waiting around for my nephrologist to get to the office just so I could get a script for the antibiotics I probably should have been taking beginning last week. I think I knew on Friday when I went from feeling almost better to much worse that this was going to be one of "those" colds. I was the first patient in the door when they opened, so I only had to wait a grand total of 10 minutes. Right after I showed up about 10 other people did... I'm sure their wait was much longer. The doctor confirmed the ear infection (actually in both ears, but the pain in the right one must've been I woke up this morning with a seering pain in my right ear. I knew right away that it was an ear infection. I had one about 5 years ago, and many when I was 3-4 years old, and one never forgets the pain. Oh yes, and the lack of hearing in that ear is a good indicator, too. After dropping my son off at school I took myself over to a new walk-in clinic near my house that I've been keeping in mind for just such occasion. I didn't want to waste time waiting around for my nephrologist to get to the office just so I could get a script for the antibiotics I probably should have been taking beginning last week. I think I knew on Friday when I went from feeling almost better to much worse that this was going to be one of "those" colds. I was the first patient in the door when they opened, so I only had to wait a grand total of 10 minutes. Right after I showed up about 10 other people did... I'm sure their wait was much longer. The doctor confirmed the ear infection (actually in both ears, but the pain in the right one must've been canceling out the left's) and wrote the script for Amoxicillin. Went to the pharmacy and what a pain! I would just so happen to pick the day where BOTH of my insurances have changed their pharmacy policies and their corresponding systems were down. Lucky me. After sitting around for a half-hour while the pharmacy tech tried a hundred different ways to get it to work, she took pity on me and gave me a couple of pills to tide me over until tomorrow when the system(s) should be back up. I guess she realized how pitiful and miserable I looked. MEANWHILE, another little "issue" I haven't talked about has been rearing its ugly head, more than usual, over the last few days. I have an extremely high pulse rate, never below 80, and usually 110 and above. I could be dead asleep, flat on my back, and my pulse will be racing at 120 for no reason. The nurses at dialysis are always alarmed when I stand up for my BP at the end of my treatment and my pulse goes up to 140. With the pain in my ear nearly unbearable, I could not only feel my pulse but also hear it. Sooooooo I called the neph to A) inform them of my ear infection B) check to make sure I wasn't given some deadly combination of new drugs and C) tell them that my heart was pounding in my chest and really bothering me. I got another script to run through the pharmacy's FUBAR'd system. Yay. Now I'm going to start taking Atenolol. I've never taken it before, but I am familiar with it. I thought it was a BP drug, but I guess it is supposed to slow my heart rate...? Eh. Either way, I'm getting drugged up good, today. Blech.