CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

Well, I’m definitely feeling better. My creatinine went down a little, but I’m still acidotic (that’s what happens when you have diarrhea or vomiting, and what causes  you to feel so terrible; it’s measured by the CO2 level).  My hemoglobin is lower (not worrisome), and my white blood cell count is coming down nicely. (labs are below)

My appetite is almost back to normal, and I’m much better hydrated as well. Although this intestinal virus has hit many of us at work, I think that I got hit so hard with it and that it lasted longer than usual because my immune system is suppressed. But that’s a small price to pay for having a functioning kidney.

Christmas day was rough, because I physically felt horrible. I could barely lift my arms when opening presents (low potassium?), and slept for over 4 hours during the day. I barely ate, and had little energy. But once the weekend came, I started on the upswing, and today, I’m feeling fine.  It’s a good thing my appetite is back; I’ll be able to eat shrimp and lobster tonight!

One of the patients in our practice, a 6 year old, was placed on the transplant list this past fall for a kidney, and had begun Peritoneal Dialysis (the preferred dialysis for children). She received the best Christmas present ever: a new kidney the week before Christmas!

Kevin and I got Jackie a Nintendo Wii for Christmas, and they are both enjoying it. I haven’t played yet, because I’ve been too busy and too sick, but hopefully will get to play over the weekend.

For those readers who are computer geeks: Kevin’s computer is up and running. I spent about 7 hours this week trying to get it connected to the internet. The problem: there aren’t a lot of wireless adapters that have working drivers for Vista 64 bit.  I bought a Netgear WG311, because it’s listed as compatible. It installed without a hitch, but it just wouldn’t connect. As I said, I spent 7 hours on it, and was ready to run a CAT5 cable through the wall into Kevin’s room, but I first posted the problem on a Netgear forum. I’m glad I did; the problem was with a simple setting on the router, and once I changed it, I was connected.  He’s very happy with the computer; it’s lightening fast (8 gb RAM will do that).

Happy New Year!

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I’m back to work today, and overall feel better. I was able to rest the past 2 days, which helped a lot, although I’m still not eating much (I’ve lost another 4 lbs since Monday, bring my total to 12 lbs lost since last month).  The diarrhea has slowed down, and I’m not as fatigued.

My doctor is confident it’s just a viral gastroenteritis (fancy term for diarrhea from a virus); the C. Difficile was negative. My creatinine is up to 1.5, but that’s probably just from being a little dehydrated.  Here are my labs from this past Monday:

—————————————————————————Last night, I had to go to Wal Mart, and walked in at around 9:30. It was a funny sight, when I saw all of these middle-aged guys standing in front of the card racks getting their last-minute Christmas cards.

It was icy on my way to work today; part sleet, part freezing rain. I fishtailed getting onto Interstate 80, but once on, it wasn’t bad. Right below the entrance ramp, there was one overturned 18 wheeler, and another getting towed. About 1/2 mile after getting on I-80, a tandem-trailer Fed Ex Ground truck went flying by at 80 mph! It’s no wonder why there are tractor-trailer accidents when you have an idiot like this driving so fast in freezing rain.

Merry Christmas!

I haven’t been feeling well the past 2 weeks. I was still getting the flank pain, no appetite, some diarrhea, sleeping more, feeling cold (but no chills) alternating with being flushed. Last Monday, I emailed my Transplant Nephrologist (I no longer see my previous Neph), and he told me that since my temp was 100.1 (which, by the way, is NOT a fever), I should go to the Emergency Department. Personally, I felt that his response was total bullshit (pardon the language), and discussed it with my primary doc. I told him my concern that I may have a kidney cyst infection, so he ordered blood work and a urine culture, and prescribed Cipro. The blood work was all fine, except my White Blood Cell count was 6.28 and my segs were down to 31; the previous WBC was 4.39 1 week before, and 4.03 last month, and my segs were running previously around 75-80. Although the WBC is still normal, it is up from previous lab draws, but the segs are low.

I felt better last week, although not 100%. But over the weekend, I started going a little downhill again, and developed abdominal pain and diarrhea (I had diarrhea for about a week, but took Immodium; the Transplant Coordinator told me to take it whenever I got diarrhea, to avoid dehydration). When the abdominal pain started, I stopped the Immodium, and the diarrhea started. Last night, I slept for about 90 minutes in the evening after working a 10 hour shift, and getting up at 4:30 to go to work. While I was sleeping, I developed chills.

The pain is in my right lower quadrant (I have my appendix out), and comes and goes. It feels like a gas pain. I also had some more flank pain today as well, but that only lasted about a minute. When I went to work, I asked my doctor to see me, so I had an appointment with him. My abdominal exam wasn’t bad; he feels I have a gastroenteritis. He ordered blood work, urine culture and u/a, and stool cultures, abdominal ultrasound, and signed me off work until Wednesday. Of course, Jackie thought I was going to be admitted to the hospital (in her defense, I haven’t eaten much lately, and have lost 8 lbs since last month), but Dr. G. wasn’t concerned that it was anything serious. The possibilities with the diarrhea include a viral gastroenteritis (lots of that going around), C. Diff (from the Cipro), or a side effect of my CellCept (immune suppressant).

I’ll post back when I get my labs and more answers. Back to bed now….

I chose to wait to write about this incident, for obvious reasons….

Being that my donor was a substance abuser, that put me in the “high risk” category for a blood-borne disease such as Hepatitis C and HIV. They tested the donor thoroughly, but there still is a small “window” between infection and being able to pick it up on testing.

Everything was going well until September, when I was due for my routine HIV and Hep C testing. I had it done the day before, and when the Transplant Coordinator entered the room, I immediately knew something was wrong, and when she laid a lab slip next to me for more HIV testing (which I had done the day before), I figured something was REALLY wrong.

It turns out that the wrong test was ordered. Instead of a HIV 1 and 2 antibody, they ordered a Western Blot. As was explained to me, the Western Blot checks for 6 different HIV antibodies. 0 is negative, 1-2 is indeterminate, and 3-6 is positive for HIV. Wouldn’t you know, I had 1 antibody. I was fit in that day to see the Infectious Disease doc because the surgeon wanted reassurance for me (and him) that it wasn’t an issue. The first thing the ID doc said to me was that he didn’t know why I was there for an appointment because it was a big nothing. I was 20 weeks post-transplant, and indeterminate Western Blots are not all that uncommon. Sometimes a person is indeterminate the one time, and the next time is negative; sometimes they continue with an antibody or 2. But the window for infection is predominately within 6 weeks, so he felt it was nothing. They did the correct test that day, and I was negative.

I was tested again 2 days ago, and continue to be negative (for both Hep C and HIV). The surgeon told me at my appointment that due to the profound immunosuppression right after transplant, should the kidney have been HIV+, I would have developed HIV shortly after. Yes, it was a stressful time….

My theory of last month was validated: after 1 month of being off Dapsone and Valcyte, my hemoglobin is up more than 2 GRAMS; I was 11.5, and this week was 13.6! So it must have been either or both meds causing the anemia. No more Procrit, which is good.

I’ll still be getting monthly labs, but my next appt is 2 months, rather than 1, so things are always getting better.

The only downside lately is that I’ve been getting mild to moderate flank pain. No doubt cyst pain from my “native” kidneys, and not much to do about it, unless they get infected. I hope they shrivel up soon and fade away, as they most likely will do….

Well, it’s now 7 months ago today that I got my new kidney, and I’m peeing up a storm!

The ONLY downside at this point (and one  I’m more than willing to live with as compared to dialysis) is that my appetite is better, which resulted in weight gain. I’m stable with my weight, as I continue to walk every day at lunch, and my clothes are only 1 size larger…

However, the numerous upsides far outweigh the downsides. The biggest difference I notice is mental clarity. My brain actually works once again. Prior to dialysis, and even when I was ON dialysis, my mental function was noticeably different. I wasn’t able to think as clearly, multi-tasking was difficult, etc. I also was very tired all of the time.

I have my monthly appointment next Wednesday with the Transplant Surgeon and Nephrologist. I can’t wait to see if my hemoglobin is high enough to get rid of the weekly Procrit shots.

Kevin started his new job last night at McDonald’s, and actually liked it. I think that had a lot to do with the fact that he finally has a job. This week, he’s working 5 nights through Sunday, for a total of 25 hours. One of the girls who started with him last night was already fired, after she started arguing with the manager. Duh….

I got Kevin’s new computer up and running. Not bad for $600, although had I waited another week to order it, it would have been cheaper. This is only my 2nd-ever computer build (the last one being 5 years ago). For those interested in the details:

Raidmax Sagitta 2 Mid-tower ATX Case, Biostar Motherboard, CoolerMaster 550w Power Supply, AMD Dual-core CPU, OCZ Fatal1ty RAM (8 GB) , Western Digital Caviar Black 500GB Hard Drive, LG DVD Burner, and Windows Vista 64 bit Operating System.

It runs great, but I didn’t really “take it for a test drive yet”, nor hook it up to the internet; I just installed Windows and put it away until Christmas.