CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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Still with low BP at dialysis, but I’m not symptomatic near as much. I ran 90s/50s during the treatment, but ended at 110/70.

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I spoke with my primary nurse about learning to self-cannulate (learning to insert my own dialysis needles into my arm). The advantages: I know where they go each time, and can avoid having them go into the same spot, and if needed,� I can possibly draw my own blood in the future if the veins in my other arm don’t last.� Ironically, I only had her assigned to me once since August, even though she’s my primary nurse (she manages my care plan and adjusts my med dosages). She noticed that my fistula has changed; I have several “pseudo-aneurysms” that have become bigger, and apparently need revision. The Nephrology Fellow put a referral in to the Interventional Radiologist. If he’s unable to do anything, I’ll have to see the Vascular Surgeon. Just one more surgery to add to the list….

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Beginning wt: 92.3 kg. End wt: 90 kg.

My BP was still low when the Nephrology Fellow stopped by (98/50′s), so he bumped up my dry weight again to 91 kg. Although not today, I did�have some episodes of lightheadedness Sunday and Monday. Feeling better today, although I’m concerned about my weight gain (not worried; I just have to be�more careful, now that I feel better overall and my appetite is better).��

Beginning wt: 94.3kg. End wt: 90.9 kg.

I installed Linux on my PC. I like the look of the desktop/icons. And I like the fact that it’s more secure than Windoze, but the internet is slower with it. I’m not sure why; maybe it’s something that I have to tweak. But I’ll continue to use it, and maybe it will grow on me….

Despite stopping my Cardizem on Friday, my BP is still low, and I’m still symptomatic (lightheadedness), although I’m not as washed out. Today, my BP is 104/48.�

I’m not worried so much as I am�amazed, that after 18 years of taking BP meds, I don’t need them now.

I started out again with a low BP; 110/52. Dr. H (my Neprologist) was in doing rounds, and brought up the low BPs. He upped my dry weight again (to 90.5 kg) and stopped my Cardizem. This is the first time in about 18 years that I won’t be taking a BP med! I’m not sure that it will last, but I’ll try it. The lightheadedness is starting to get old, so hopefully, that will stop. Also, I’ve been washed out lately; maybe it’s�the BP, maybe it’s something else….

I had to end dialysis early yesterday by about 20 minutes. My venous pressure started to skyrocket, so they cut my rate from 410 down to 200, and then my dialyzer clotted. This happened before, but it’s been a few weeks. Maybe I need more heparin?�

It was chaotic on the unit yesterday. There were 8 extra patients who needed dialysis, because they didn’t make it in on Friday. I assume it’s because of the snow. I drove to and from work on Friday, and had no problem. The roads were snow covered, but I’ve driven in much worse. I guess my way of thinking is different; I need dialysis, so I’ll do whatever I can to get there (I have a 30 minute drive to dialysis, so it’s not like I live close by).�

Beginning wt: 92.8. End wt: 90.7 kg.�

I put a new hard drive in my computer last week, and when I formatted it, I put in 4 partitions (it’s a 200 gb drive). I just have to figure out how to install a boot manager, and then I’ll install Linux on one of the partitions. I’ve been wanting to try it out for a while, and I think I’m ready to take the plunge, especially since I’m not so crazy about Vista, which I’ll be stuck with when I get another computer.

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I started dialysis late yesterday. The social worker snagged me on my way in, and asked if I would sit in on a patient advocacy meeting. The meeting involved myself, 2 other patients, the Nephrologist, nurse manager, and the clinic manager. I basically just sat and listened, as I wasn’t prepared for it (she just asked me on the spot). Hard to believe, but Geisinger has been doing dialysis since the year I was born! They are having a 45^th anniversary celebration in April, which was part of the meeting. They also spoke of some patient issues as well (nurses taking too many attempts at “sticks” before asking someone else to try, getting a new ultrasound that they use to assess the fistulas and grafts, etc). It was interesting, and next time, I’ll probably be able to participate more (you know me; if there’s something not right, I won’t hesitate to bring it up).

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My BP continues to be low. I started out at 103/52, and when the Nephrology Fellow came over, it was 92/50. So, my dry weight got bumped up again to 90 kg, although I think that maybe my BP med (Cardizem CD) might need adjustment.

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Beginning wt: 92.7 kg. End wt: 89.7 kg.

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Blizzard conditions here in Northeast PA. Not really, but if you listen to Channel 16, you would think this is a major snowstorm (4-7 inches forecast, depending on� who you listen to). They started out their morning broadcast with “now our top story, live team coverage of the winter storm”, and then some idiot reporter telling us there’s a whole 2 inches of snow on the ground (idiot might be a bit harsh, since he’s only doing his job, but please, it’s only 2 inches!). Jackie and I were in Wal Mart last night, and with all of the people there, you would think the world was coming to an end.�

I uninstalled Norton Internet Security Suite on Jackie’s laptop, and installed Avast Anti Virus. It picked up a Trojan Horse that Norton didn’t pick up. And Norton is supposed to be so good?

“But he loves me.”

“I don’t think so.”

“How can you say that?”

“Well, he did shoot you in the vagina….”

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US Senators in�glass houses shouldn’t throw stones�

Dialysis went OK today. I’m peeing more, and limiting my fluids, and only had a 2.9kg wt gain since Saturday.�Pretty good for the 3 day stretch.

Beginning wt: 92.4 kg. End wt: 89.4 kg.�

My car died. It had 198k miles, and I was shooting for 100k more (not because I’m cheap; I wanted to see if I could reach that high). It needs a transmission, and the head gasket is either shot, or the head is cracked, thus it would also need either expensive repairs or a new engine. Anyway, we’re going to pick up another car tomorrow.� I’ll now drive “The Welfare Van” (a 1994 Chevy Astro, as named by Kevin), and Jackie will drive the “new” one (a used Malibu). In the fall, we’re going to get one to replace the van,� most likely a Chevy Equinox.�

I upgraded Jackie’s laptop by ditching the 512 mb of RAM and adding 2gb. What a difference!

I splurged and bought some new music. I have so many CDs, but I wanted some albums by Bad Haggis and John McClean Allen. I bought them all from CD Baby. This isn’t the first album I bought from them; my first was

sebab

‘s Aftermath.� I highly recommend CD Baby; they have music not found very often in stores, and they shipped my order in less than 24 hours.�

Work is very busy; influenza is in full force. I got my shot, so I should be OK. I had flu when I first started as a RN, and hope to never have it again. It was the sickest I’ve ever been. I was so sore, I could hardly move, and had a wicked cough, high fever (>103) and chills. Yuck!

�No more calls from the Transplant Coordinator, so the kidneys apparently went elsewhere. On the positive side, I’ve gotten 4 calls (three since Christmas), so I’m probably getting closer…

I found an interesting add-on for my web browser called StumbleUpon. You set your interest profile, and it takes you to websites that might interest you. One of the interests I listed was guns (I enjoy target shooting, but I don’t hunt), and I found this site, which has some interesting ammo�for my 12 guage shotgun (although nothing I would ever buy, except maybe the tracers. For now, I’m sticking to shooting Blue Rock with bird shot). The next site was an interesting photo of Hillary Castro.� After that, it was on to DNA From The Beginning, a tutorial on DNA, genes, and heredity.��The next site looks interesting as well; the Encyclopedia of Life, “an ecosystem of websites that makes all key information about life on Earth accessible to anyone, anywhere in the world.”� And last, Vertus Fluid Mask, which has some cool Photoshop images.�

The downside: one of the sites had a Trojan Horse, but fortunately, my newly-downloaded free copy of�Avast Anti-Virus (thanks to

susandennis

�for telling me about this on her journal) picked it off before infecting my computer.

Sleepy day at dialysis today. I met the Transplant Nephrologist for the first time today (ironically; more on that later); he will take over as my Nephrologist once I’m transplanted.� He was rounding for my Neph, and just checking in to see if I�needed anything. He asked if I was on the transplant list, and when I told him I’ve had 3 calls, he said “I would bet it will be soon” (that I get a kidney).� Other than that,�dialysis was uneventful.�

Beginning wt: 93.7kg. End wt: 89.3 kg

Tonight, my cell phone rang at 8pm; it was the Transplant Coordinator. She had a “backup offer” for me.� A 19� year old male who had an “anoxic event” 5 days ago, was resuscitated on the way to the hospital, and is now going to be an organ donor. It “wasn’t a drug overdose technically”, but he did use oral and nasal drugs (cocaine and pills), and the history is negative for IV drug use.�His creatinine has “stabilized” at 0.8 (which is good), and the surgeon thought it would be a good kidney. She still hadn’t spoken with the Nephrologist yet.

She said that there are “others” ahead of me, but didn’t know where I was in line after I asked her directly (funny how all of my other calls included where I was in line for the kidney). I asked her why I wasn’t near the top for this one, since I was the last time. She hesitantly told me that the list is constantly changing, and that there were “many factors involved”. It’s possible that I will be 2nd in line one time, and then be 3rd or 4th the next time. She also sort of let the cat out of the bag that there were possibly some kidney-pancreas candidates, and that they apparently get bumped ahead of me. I told her that I didn’t understand why I’m over 2.5 years on the list, and when I started, the average wait was 18 months. She said that no, the wait is 3.5-4 years. Maybe now it is, but it wasn’t in July 2005. She didn’t really want to hear that. Not that I was arguing, but I’m getting tired of being kept in the dark. I’m trying hard not to�stay focused and rational�about it, but when I’m told that my place on the list can change each time, I don’t understand that. I understand that they try to pair up the organ with the most ideal candidate, but…..

They are going to cross match me, and if I don’t hear from her by tomorrow night, I’ll “know that the kidneys went elsewhere”.� A call either way would be nice, but apparently that won’t happen unless I’m up for the kidney.