CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

I finally have my own domain, and it is linked to my new WordPress blog: www.chronicpositivity.com.  I also have a new blog entry at  http://chronicpositivity.wordpress.com/2008/04/21/new-address-and-other-stuff/.  

LJ is unique with it’s Friend’s Page; I really like that. But WordPress seems to be easier to manage, and includes stats as well. 

Tomorrow is the Pennsylvania primary election. It’s apparently a “make or break” for Hillary, although conventional wisdom is that she’ll win PA. In the next district over from mine, there is a very interesting race for US Rep between Dan Meuser and Chris Hackett. 

RedState endorses Hackett, but after the past week of news accounts, he seems slimey to me, and I would say that Meuser would be a better choice. Moot point, because our current US Rep is Kanjorski, who has some slime issues of his own….

I bought a domain from GoDaddy, and it is now “up and running”. When you type in www.chronicpositivity.com, it will redirect you to my WordPress blog.

For some reason, I’ve been getting “orthostatic” since Saturday (very lightheaded if I stand up too quickly). Maybe it’s just a fluke…

Last night was a T3 night. I fell asleep OK, but about 30 minutes later, I woke up and both hands were burning, and I had restless arms (similar to restless legs, except with the arms). It is such a weird feeling, and I tried to let it pass, but after 1/2 hour, it didn’t, so I took 2 Tylenol #3′s, and that did the trick. It’s been about 2 weeks since I took any T3′s, so overall, I’m not overdoing it.

My friend has scheduled an appointment with the surgeon for an initial consultation for gastric bypass. Like I told him, he’ll get to the point where living with being overweight will be worse than the perceived risk of the surgery. And, his medical problems will at the very least become much more manageable, if not resolved. Like I tell everyone: healthwise, it was the best thing I ever did.

Yesterday, I watched one of the best movies I’ve ever seen: Million Dollar Baby. Last night, Jackie, Kevin, and I watched Crash. When we first started it, we almost turned it off. But we stuck it out, and by the end, the consensus was that it WAS a good movie (3.5 stars out of 5).

Tomorrow is election day in PA, and while I enjoy following the antics of each campaign, I’m sick of all of the ads (especially the negative ads), so I’ll be glad when it’s Wednesday. Surprisingly, there are an ABUNDANCE of Ron Paul signs all over the area, and I’ve heard his radio ad several times.

 Well, today was my 100th dialysis treatment, which means I’ve had about 220 needle sticks since August, including several times I’ve had procedures and IV’s. Yes, my arm DOES look like a pincushion.

Everything went well today, and I didn’t sleep one bit! I did have a little bit of cramping towards the end, and my pressure did bottom out a little; 105/41, but I was not symptomatic with the low bp.

We had some political discussions again; the nurse I “debated” last week realized that she may have to stay late on Tuesday (PA’s primary election day), but I guess that the hospital has a policy that she has to be allowed time to go vote.

The nurse I had today was good; she got all 3 of us on dialysis quickly, and we got out at a decent time. She surprised me by telling me that she used to work as a Corrections Officer; I told her that she was the LAST person in the world that I would think of as being in that job (meant as a compliment; her personality doesn’t fit that job).

Beginning wt: 96.5 kg. End wt: 92.7 kg.

Now that I hit 100, I was reflecting back on the good and the not-so-good.

The good:

All of the staff at the dialysis unit, most of the patients, feeling better than before I started dialysis, getting in naps (mainly because dialysis makes you tired and it’s very boring), no more BP meds, and learning a lot medically that I didn’t know before.

The not-so-good:

Infiltrates, fistula problems, angioplasty, having a patient 2 chairs over going into cardiac arrest, and not being able to do anything (not used to being a patient), boredom, and fluid restrictions. ‘

I’m sure there’s more, but that’s all I can think of now.

Cross posted at WordPress.

Well, this is my first  post on WordPress (I’m cross-posting on LJ for now). I just set everything up, including my new domain, which I hope will be available by the weekend, and hope to be able to transfer all of my LJ posts to here.

I was a little frustrated with WP last night, but got over that quickly; I have to keep in mind that it’s a new learning curve. I think I’ll like it once I get used to it. It automatically saves a draft every minute or so, which is a big improvement over LJ.

Dialysis went well today. I spent most of the time on the computer, mainly playing MahJohngg (at least it exercises my brain), although I also surfed a bit.

I continue to self-cannulate (stick the needles in my fistula) without any problems.  I have an upcoming appointment in 13 days to get another angioplasty on my fistula; my aneurysms don’t seem to be worsening that much.

I’m feeling OK, except for some burning in both hands. Not much that can be done for that, and it’s not all of the time. 

Beginning wt: 96 kg. End wt: 93.0 kg.

OpenSuSE is running much better (my newly-installed Linux operating system). I was having some speed issues with my internet, but went onto their forum, and it’s fixed (very easily). 

Saturday is the “big” day; Day 100 of dialysis. Yippee! To celebrate, we’re going out for seafood after dialysis (to Cooper’s Waterfront in Pittston).

 Smooth day at dialysis yesterday, except for some slight cramps at the end of the treatment (nothing like those from 2 weeks ago).

I took Jackie’s laptop, played some MahJohngg and did some StumbleUpon (Geisinger had several of the websites blocked; my guess is that some were on YouTube). 

The nurse I had is a BIG Hillary Clinton supporter; she had a large Hillary button on that she apparently got from the rally she went to this past weekend in Bloomsburg. She was all excited, because she had shaken hands with Bill twice at the rally. I asked her if she washed her hands well afterwards . Anyway, she started debating politics with me. I asked her a very leading question: who’s fault is it that gas prices are  high? Of course, her answer was the usual: it’s Bush’s fault. Well, I tried my best to give her an economics lesson; the futures traders bid up the price, Opec controls supply, increased world demand, and the environmentalists making it too difficult to start up new refineries and new drilling projects (I forgot to mention that Mexico is allowing China to drill in the Gulf Of Mexico, and getting oil that the US could easily get as well). Needless to say, she was flustered. I had fun debating; as I said, I’m not going to change her mind, and she isn’t going to change mine, but it’s fun to debate.

Beginning wt: 95.7 kg. End wt: 92.9 kg.

Still deciding on the blog move, but I’m leaning towards WordPress to host it and just use my own domain. I have to figure out how it’s done, and then maybe I’ll even do it before the surgery.

The weather here is awesome. I took the dogs for a ride in “the welfare van” (I drive a 1994 Chevy Astro, that still runs great. Cosmetically, it needs some work on the inside, but I could care less; Kevin has thus dubbed it “the welfare van”). Kevin called me on my way home from dialysis and asked me to drop him off at The Riverlands (a small lake run by PPL across from their nuclear reactors). So, I picked up the dogs, and drove him to go fishing. He did get a “15″ Palamino trout (but threw it back in).

Poor Kelsea; she’s still dizzy, and isn’t able to get around as well as before; I’m hoping this is still just the acute part of the illness. The dogs all enjoy going for rides. Even Chester, even though he’s not tall enough to see out the window, and because of his “girth”, he’s too fat to make it up on the seats.

Jackie worked in the yard last night; I didn’t, because I didn’t want to lift anything, since I had dialysis a few hours before, and didn’t want to risk bleeding.

I’m really glad that last week is over. It seemed like everything hit at once. I usually am able to handle things fairly well, but last week took a toll. I wasn’t exactly upbeat yesterday, but feel much better today.

One of the problems I’ve been dealing with is Kevin’s school Kevin also has Charcot Marie Tooth (a form of muscular dystrophy), which was diagnosed last summer. Prior to that, the school had noticed that he had problems with handwriting, and the school’s Occupational Therapist came up with a plan for the teachers to follow to adapt to this. The plan is called a 504, and the teachers are required to follow it. We are fine with him having the 504, but let him know that we expect that he doesn’t hide behind this to get out of work (he’s not the type of kid that would do that anyway). Every year, there’s always a teacher that thinks that is optional, and we end up addressing this with him/her. This year, however, has been particularly bad for this, with 3 teachers ignoring it. He does well in all classes except for the ones that the teachers ignore the 504. Jackie initially dealt with this by emailing the teachers, and then going to the assistant principal and the guidance counsellor (she works in the district as a teacher). We got lip service, and were told it would be taken care of, but it wasn’t. That’s when I got involved…

I started with the assistant principal, and got nowhere. I then went to the principal, and he said that it would be taken care of by the end of the week (I spoke to him on Tuesday). The following Monday, it still was going on, and I called the principal again; he was surprised to hear that the person he delegated it to hadn’t done what he was supposed to (I wasn’t surprised; this was what had gone on all along). Well, that call did the trick. However, ANOTHER one of his teachers started giving him problems, so I called the Occupational Therapist. The 504 states that Kevin is to be given extra time to complete written assignments, and that he is given the option to type rather than write, since he has poor coordination and muscle tone in his hands. However, this bozo composition teacher required that his compositions be almost double the length of what the other students were required, and also gave him an ultimatum that he had to hand in all of his compositions IN WRITING BY THE NEXT DAY. Of course, this occurred the day after I found out that I wasn’t going to get the transplant that I originally was told I would get.

Yesterday, the OT called Jackie, and apparently, got everything straightened out. For now, at least….

I’m taking this blog to “the next level”. Sunday, I bought a new domain name, and plan to eventually move my blog to the new domain. I haven’t yet decided whether I’ll have WordPress.com host it, or host it through a hosting plan. I figure that I will decide that after my surgery, when I’ll have a lot of free time on my hands.

There were several reasons for switching. First, I’ve had several instances where I was posting on LJ, after typing directly on the “post” page, and when I submitted it, all of the text was lost, and it didn’t post. VERY FRUSTRATING. Second, LJ doesn’t offer stats on page hits; I’d sure like to know how many people are reading this. I’m getting more and more messages from people finding my blog through Google. With WordPress, I’ll be able to keep track of site hits.

One of Kevin’s classmates made the paper yesterday. Her 19 year old ex-boyfriend snuck up behind her while she was walking down the street, ripped off her blouse and bra, and then punched her in the head. This girl was at Kevin’s 6th birthday party, so I remember her as a cute little 1st grader. However, Kevin says that she now has a “reputation”, and has a community chest, if you get my drift. It’s amazing how some kids change. As a parent, it’s also scary….

Jackie’s Yankees avoided a potential curse. Those Red Sox fans will resort to anything. And take a look at what ELSE they found. Me, I don’t care one way or the other…. 

There is a campaign to ensure that potential dialysis patients have a fistula created prior to needing it (so that it matures), rather than wait until the last minute and have a catheter put in. 

A fistula is when the surgeon connects an artery to a vein side-by-side. The greater pressure in the artery causes the vein to get larger, thus creating an “access” for dialysis. However, they take several months to get larger, so they should be done before the person needs dialysis. 
 
Shortly after starting dialysis, there was an older gentleman that started as well. He had a catheter in his chest, and they used that. I was next to him when his doctor came in to discuss a fistula, and it just so happened that the treatment prior to this, I had an infiltrate. He mentioned to the doctor that he saw what happened to me, and wanted to keep the catheter, because he saw the pain I was in with the infiltrate. Anyway, the doctor gave him the spiel about catheters being infected easily, the veins stenose when catheters are inside them, lower flow rates with dialysis vs a fistula, etc. He finally got a fistula several months ago, but the nurses are having a hard time accessing it; I assume that it’s probably too deep. He’s been insisting that they use the catheter, even though they could probably use the fistula.

Well, on Saturday, Mr W had intense chills. His doctor was in, started him on IV antibiotics, admitted him to the hospital, and told him that if he still had the chills by yesterday, they would take out the catheter. 

Even though I’m having my own set of issues with my fistula, I’m still much better off. I understand the hesitancy of someone when they are told they need a fistula (denial; I experienced it first hand), but Fistula First is the best way to go. 

Barack had a good comeback yesterday to the controversy surrounding his remarks. ““She knows better. She is running around talking about how this is an insult to sportsmen. She, how she values the Second Amendment, she’s talking like she is Annie Oakley. Hillary Clinton is out there like she’s out in the duck blind every Sunday. She’s packing a six shooter. Come on. She knows better. That’s some politics being played by Hillary Clinton. I want to see that picture of her out there in the duck blind. “

Remembering back to the early to mid 90′s, it was during the Clinton presidency that Bill and his cronies did their best to grab our guns. In fact, that was one of the main issues that caused the Dems to lose control of the House in 1994. Hillary knows that the gun issue can break a candidate, and is trying to make it look like she is pro-NRA/pro-2nd amendment. Far from it.  Politicians suck…..

Nice day yesterday, weather wise and dialysis wise. I was on dialysis within 10 minutes of getting weighed! Mr. Whiner’s mommy must have gotten him up on time….

Now that I’m off Celexa for several weeks (and doing well), I’m beginning to eat less, which is actually a good thing. I’ve gained close to 20 lbs since last fall, and feel uncomfortable. I think I’m beginning to lose weight, and while that sounds good, the Nephrologist might not look at it in a positive light. So, I began eating protein bars so that my Albumin doesn’t drop. 

I took the laptop to dialysis yesterday, because I figured out why I couldn’t get into my email there. I was using the Verizon Yahoo browser, and it didn’t like the Geisinger network (or vice versa). I used IE7 yesterday, and had no problems (except that Geisinger blocks some of the more popular websites such as YouTube, MySpace, etc). 

Beginning wt: 94.8 kg. End wt: 92.8 kg. Looks like I’ll have to have my dry weight adjusted downwards now.

Kevin went fishing yesterday (1st day of trout in PA), and caught a “sucker” and a 15″ Rainbow Trout; he was happy. I’m still trying to figure out where he gets this “fishing gene”. 

Kelsea is still a bit dizzy, especially in the morning, and her head is noticeably cocked to the side; I’ll have to post a picture, as it’s very impressive. 

Today, I’ll probably go home from work and spend the rest of the day cleaning my gun collection; after all, I’m just a bitter working class voter who clings to my guns.  While I’m at it, maybe I’ll go buy me a pickup truck with a confederate flag on it and use that to drive to church. I’ll also have to remember to stop for some chewin’ tobacca and beer; I can use the beer bottle to spit into when I’m chewin.  Nobama 08; keep the change…..

You  know you’re a  nurse when..
 
1) the front of your scrubs reads “Nurses… Here  to
 Save your ass, not kiss it!”

2)  you occasionally park in the space with the
 ”physicians only” sign… And knock it  over.
 
3)  you believe some patients are alive only because it’s
Illegal to kill them.
 
4)  you recognize that you can’t cure stupid.

5)  you own at least three pens with the names of
Prescription medications on them.

6)  you believe there’s a special place in hell for the
Inventor of the call light.

7)  you believe that saying “it can’t get any worse”
Causes it to get worse just to show you it can.
 
8)  you wash your hands BEFORE you go to the bathroom.

9)  you believe that any job where you can drive to work
 In your pajamas is a cool one.
 
10)  you consider a tongue depressor an eating utensil.

11)  eating microwave popcorn out of a clean bedpan  is
Perfectly natural.

12)  you’ve been exposed to so many x-rays that you
Consider it a form of birth control.

13)  you’ve ever heard a patient with a nose ring, a brow
 Ring, and twelve earrings say “I’m afraid of shots.”

14)  you’ve ever placed a bet
 On someone’s blood alcohol level.

15)  you’ve told a confused patient that your name is that
 Of a coworker and to call if they need help.

16)  your bladder can expand to the size of a winnebago’s
Water tank.
 
17)  you have seen more penises than any prostitute could
 Dream of.

18)  you believe that not all patients are annoying…
 Some are unconscious.

19)  your family and friends r efuse to watch medical
Sitcoms with you because you spend the whole time
 Correcting everyone and pointing out upside down
 x-rays.
 
20)  you don’t get excited about blood, unless it’s your
Own.

21)  you’ve sworn to have “do not resuscitate” tattooed  on
 Your chest.  Soon.
 
22)  discussing dismemberment  over a gourmet meal
Is perfectly normal to you.

23)  your idea of fine dining is anywhere you can sit down
To eat.

24)  your idea of a good time is a cardiac arrest at shift
Change.
 
25)  you believe in the aerial spraying of prozac.

26)  you believe that “shallow gene pool” should be a
Recognized diagnosis.

27)  you believe that the government should require
Permits to reproduce.

28)  you believe that unspeakable evils will befall anyone
 Who utters the phrase “Wow, it’s really quiet, isn’t i t?

29)  you have  ever wanted to write a book entitled
 ”Suicide: getting it right the first time.”
 
30)  you have ever had a patient look you straight  in the
Eye and say “I have no idea how that got stuck in there.”
 
31)  you’ve had to leave a patient’s room before
You begin to laugh uncontrollably.  Absolutely true!!

Back to work yesterday, and it was steady, but not terrible. I had a bunch of stuff to do from missing the day before, but was able to get it all done before going to dialysis. The weather here was beautiful; sunny and 70 degrees, so I enjoyed the walk over from my clinic to the hospital dialysis unit.

When I got to dialysis, I walked in and weighed myself. The patients on either side of my chair were already on (not unusual, as they are there earlier since they are retired), but the patient that precedes me in the morning was still in the chair. This is far from the first time that this has happened, and I’m sure it won’t be the last. Before I begin my rant, I’ll preface it by saying that each patient has a different dialysis order. Some are on for 3 hours, some for 3.5, and some for 4 (me). Although I don’t mind, I’m usually the last one to leave, since I’m working before, and am on for 4 hours. Now, for my rant.

I went back to the waiting room for 30 minutes until I was called back. I found out that the patient before me didn’t show up for dialysis. The nurse called his house, and his mommy answered (he’s 35; I usually reserve the term mommy for children under the age of 8 and children over the age of 25 who still depend on the mommy to get them through life despite being physically and mentally able to do so themselves). They asked her why he wasn’t dialysis, and she answered that she forgot to wake him up. This is the same guy who didn’t show up for dialysis on Tuesday a few months ago because he didn’t feel good.  He showed up in the ER at noon (he was to start dialysis at 6am), and was sent to dialysis at 3pm to be dialyzed, because his potassium was in a life-threatening range (7.0), and he had gained 6 kg over the weekend. Either this guy has a death wish, is clueless, or just doesn’t care. Anyway, he started late yesterday, which then bumped my time back as well.

I don’t have a problem starting late due to unforeseen circumstances, but this is getting to be habitual, and I’m about ready to say something to the nurse manager. If he wants to sleep in, then he should switch to the later morning shift. I’d love to sleep in, but I’m up at 6am on non-dialysis days and 5am on dialysis days to go to work.

Judging from what I’ve seen of him, he’s a whiner. Unfortunately, I don’t have much time for whiners. We all have our own problems, and whining about them is not going to make them any better.  I’d just love to tell him about my former co-worker’s 27 year old daughter who is currently in CCU with a chest tube and a pain pump for her stage III lung cancer that has invaded her heart. And from what I’m told, she’s still upbeat, despite the grim prognosis. Mr Whiner thinks he has problems? He needs to realize how lucky he is…

Rant over.

Otherwise, I self-cannulated, which was fine at first, but I think the needle was close to a nerve, because about half way through, I developed severe pain at the lower needle site. The nurse repositioned it, and it helped briefly, but then was hurting even more. So, she slowed the machine down to 350 ml/min, inserted another needle, and clamped off the other one. The pain subsided, and they just removed the first needle after dialysis was done.

Beginning wt: 95.1 kg End wt: 93 kg.

Kelsea is much better. She still has her head cocked to the left side, but she’s eating, not vomiting, and the dizziness is apparently much less.

Wednesday was the day I found out that I wasn’t getting the kidney, as well as the day that I thought we’d have to put Kelsea down. I left a voice mail for the head of the clinic about what had happened, and that I wouldn’t be in. I never heard back from her that day (which was fine), but when I returned yesterday, she didn’t say one word to me. She hasn’t said anything to me today either. I’m very surprised at this.

Looks like I’ll make it to Dialysis Day 100 and beyond….