CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

Nothing new on the kidney transplant/health front.

I did finally get back to walking every day. Between recovering from a month of sickness before and after the holidays, and the extremely cold weather, I stopped walking. But now, I’ve walked every day at work for the past week, and yesterday, I’m back to the distance I was walking last fall before getting sick. I feel the difference (for the better) already.

The highlight of the week is that my wife Jackie got a teaching job! She had been teaching in the local school district for the past 3 years, and lost her job at the end of the last school year (bumped for a political appointee, as her position was non-contract, and there is a lot of corruption in PA with teaching positions). She started working at a private school for special needs students. She worked in a classroom with an autistic adolescent as a professional assistant (for lack of a better term), and started back to school for her Special Ed. certification.  One of the teachers just left his position in the middle school-aged Emotional Support classroom, and she was hired yesterday for the job. It’s been a long time coming, and we are all thrilled.

Digger, our GoldenDoodle, has decided that he likes meat. He never was that interested in food before; he ate when he needed to. Last week, Kevin cooked sausage for supper on the night Jackie had class. I wrapped the leftovers in foil, as Kevin wanted to take them to his friend for him to try. Well, we forgot to take them, and when we got home, there was nothing but foil on the floor.

Today, Kevin came home from school to find that Digger had reached up on the counter, and got a hold of Kevin’s almost full 1 lb bag of Sweet and Spicy (VERY spicy) beef jerky. Needless to say, the only thing left was the empty bag (I’m sure Kelsea was right there eating as well). No adverse GI effects yet.

Digger is mischievous, but he’s the type of dog who is easy to forgive.  He’s actually quite smart,and some of the things he does are funny.

Suprisingly, the intestinal virus that I had back in December seems to STILL be making the rounds. At work, we are also starting to see influenza, and I think I heard on the local news that a strain of influenza that closed down a school north of here was different than the strains in the vaccine.

This is the first year in about 18 years that I haven’t gotten a flu shot; the Transplant Surgeons’ policy is that I need to be at least 1 year out from my surgery. I’m not at all worried, as there are far worse infections with the immunosuppression than flu, although I’m more likely to get influenza than, say, pneumocystiis or a fungal infection.

Not much going on from a transplant perspective. I feel so good, that sometimes I have to remind myself that I’ve even had one! I have labs and appointments on February 16.

I was doing so well exercising prior to December, but then I was sick for a few weeks, and between that and the weather, I haven’t been walking. Today, I started again, as I feel a difference not walking. Other than slippery or snowy conditions, I plan on walking every day.

I mentioned a little girl in a previous post, who is a patient in our clinic, who recently received a kidney transplant. The local paper did a feature story on her (not available online) a week or so ago. She is 6 years old and received a kidney from a relative (aunt?). She has Nephrophtisis. I don’t know a whole lot about this disease, but the article said that she would drink anything in sight (which is a symptom of the disease called polydipsia). She is reportedly doing great at this point. Prior to that, she was on peritoneal dialysis for a few months. (all information is from the newspaper).

In other news, surgeons have performed what is thought to be the first kidney harvest of a donor’s kidney through her vagina. Sounds rough, but the pain is more than likely a lot less, and recovery time a lot quicker.

I no longer blog at MyKidney; Krissi  has (or will shortly) take down the site. I can understand; a lot of the noteworthy posting is BEFORE and immediately after transplant. After that, you feel so much better and life from a medical perspective becomes fortunately boring.

On the home front, Jackie just went back to grad school. She already has a M.S. in Elementary Ed, and is going back now for Special Ed certification.  Her classes are Monday and Tuesday nights, which makes for a long day, in addition to the work she has such as reading, papers, etc. She was doubly busy these past 2 weekends, because a teacher where she works is out sick, and Jackie is filling in for him. Since the other teacher didn’t have anything done, she’s had to do lesson plans, establish a structured routine (it’s a middle school emotional support classroom), etc.

As for me, I’m still working weekends in the same home. There is another child that Brian’s family has that is in similar condition (trach, CPAP, feeding tube, numerous meds,etc). I did have a weekend off last month, but am working all this month. I’ll have to take a weekend or 2 off next month. I also have a vacation from my full time job in April.
In the meantime, I’ll be working so that the government will have enough to fund $100,000 worth of doorbells for a housing program in Mississippi.

For those of you who like Celtic Rock, check out some of the MP3′s of Stand Easy (with John Allan McLean). I now have all of his albums; awesome stuff!

Until next time….

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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For my US readers, a belated Happy Thanksgiving.

I had the week off from my full-time job, but was very busy. I had a dentist appointment for a routine cleaning on Monday, I took our 12 year old Springer Spaniel to the vet on Tuesday for her Rabies vaccine, I took Kevin to his yearly check up on Wednesday, chauffered Kevin around in the afternoons…

I also took our 2003 Chevy Malibu to get a new intake manifold gasket on Tuesday. I knew that when the garage called at 11am, the news probably wasn’t good. The bolts holding the rocker arms were shearing off, and the heads needed to be remachined (does that mean anything to you? it only means $$$ to me). Soooo, I had to rent a car for the week (got a good deal from Enterprise), and hopefully, the work will be done by Tuesday. I’m thinking that this will be the last GM car we get, at least the last one with a 3.1 liter engine. GM was well aware of the issues with that, but continued putting in inferior intake manifold gaskets, as well as using the Dexcool that ruined them.

My sister didn’t get the kidney on Tuesday; she didn’t cross match with the donor. The odd thing is that the Transplant Coordinator asked if she had any blood transfusions lately, as she had antibodies (which she apparently didn’t have before).

I had a white knuckle drive to work this morning; snow on Interstate 80, followed by freezing rain over Washingtonville Mountain/PA 54 (“Warshingtonville” as pronounced by the locals). No Amish buggies this morning, but they apparently already were out before me, judging by the numerous patches of horse manure in my lane.

Medically, I went off my Prilosec for the first time since May. I had never taken it prior to transplant, and want to see if I still need it. I initially was on Pepcid in the hospital, went off of it shortly after coming home, had stomach upset, and then went on Prilosec. I notice that I do have more difficulty tolerating certain foods, in that I can’t eat as much, but that’s a GOOD thing. So, I’ll see how it goes.

We didn’t do the Black Friday doorbusters this year, however, we did get 1 good deal. I need a replacement for my Ipod Nano. Nothing fancy, since I only use it on walks, and don’t use it for video or pics. I’ve been looking at a Samsung 4gb MP3 player. It’s a model that I think just came out, and was $99.99 over the summer. Wal Mart in store has it locally for $79.99, and $69.99 online. I saw that Circuit City had it Friday for $59.99, so I ordered it for instore pickup. When I got to the store, they had it for $79.99, so I saved $20 just by ordering online.  I notice today that Wal Mart lowered it another $5, and has it on clearance.  since it’s a Christmas gift from Jackie and Kevin, I won’t open it until Christmas, so I won’t know how good it is until then. I’ve always had good luck with Samsung, so it should be fine.

My sister called me today while I was in the dentist’s chair; she got a call for a possible kidney. When I called her back, she was on her way to the hospital to get her blood work done to match antibodies (HLA typing); the doofuses (sp?) at her dialysis unit didn’t draw it this month as they were supposed to. Now, after it’s drawn, a taxi has to take it 90 minutes from Geisinger, to the lab at Hershey in order for it to be run.

As you may know, she has been on dialysis for a while now (I think it’s almost 4 years now), but was listed for transplant after me.  Also, her blood type is O negative, and mine is A negative (O is usually a longer wait for an organ).

The downside to this call is that she’s 5th in line (making it less likely for her to get it, although not impossible), and the circumstances: the donor is a 50 year old with substance abuse history (alcohol and cocaine) who shot himself.

The upside is that she is getting calls now (IIRC, this is her 2nd).

She is concerned that if she IS offered the kidney, that it may have damage from the donor’s lifestyle (substance abuse). Rest assured, the surgeons would not even consider putting one in that was less-than-optimal; she is listed at the same transplant center as I got mine-Geisinger Medical Center.

In other news, our son had a job interview today and now has a job. Yes, he will be cooking hamburgers at the McDonald’s that is located 4 blocks from our house.

He was very excited, as it’s difficult to get a job these days as a teen, at least a job that is within our town, as well as the fact that he won’t have to ask us for money (his words). The manager chose him over the kid interviewed after Kevin, who was wearing jeans and a “gangsta” sweatwshirt (Kevin wore Dockers and a nice shirt).

Ironically, I also worked at McDonald’s when I was the same age (I had “pull” in getting my job, as my uncle was a vice president for McDonald’s at their Oak Brook HQ, and knew the local owners). Now, Kevin can learn firsthand about income redistribution.

Today, we “fell back” with our clocks, and turned them back 1 hour. Being that I worked today, and depend on my cell phone for an alarm, I was very disappointed (actually, quite pissed off), that Verizon Wireless still, as of 1:15 pm EST, has not fixed the problem. Jackie’s phone and the phone of the mother who’s house I work at both are having the same problem, yet the father, sister, and other nurse I work with aren’t.

Today I hit a lot of traffic on the way to work; I got stuck behind 3 Amish buggies. Usually, they travel the opposite direction when I’m driving in, but today, church services must have been at a nearby house. It’s very dangerous for these buggies on a hilly highway. Just 2 or 3 years ago, there was a buggy that had just driven over the crest of a hill, and a car slammed into them from behind, killing some people. It’s ever worse in the fog.

Chester, our elderly Sheltie, is in the “hospital”. His appetite has been poor over the last week or so, and he hasn’t even been drinking much. Friday morning, he was having breathing difficulty, but his nostrils were caked shut with dried mucous. He ended up staying over at the Vet’s, had blood work and a chest x-ray (which didn’t show much other than dehydration), and has been getting IV fluids. He still isn’t eating today, so she decided to keep him until tomorrow.

And now, for some entertainment, here’s some awesome juggling (I’m not sure why the first frame is a kitten/frog; it has nothing to do with the video):

I had a surprise today when I was reading an online column by a local talk radio host. I started reading Small Towns Can Create Big Minds, and soon realized that it sounded VERY familiar. In fact, the teenager mentioned in it was our son Kevin.

The radio host who wrote the column, Corbett (who is also a newspaper journalist),  is a self-proclaimed “left wing radical” and “feminist” who has worked in various areas of the country. For those who know me, you are probably VERY surprised that I would listen to a “left winger”, but I DO like to get opposing viewpoints, and I actually have some common philosophies with Corbett (we both believe that government corruption is ruining this country, and needs to be reined in); I also appreciate the fact that he respects differing viewpoints, and is fairly open minded as well.

I listen to Corbett every day on my way home from work, and got Kevin listening to him as well (although since school started, he hasn’t been listening as much). For those who want to hear a sample, his show is broadcast daily on the Net between 3-7 pm. He also writes frequent columns that can be read here. Lately, local Obama supporters are in an uproar, since Corbett is a Hillary supporter, recently quit the Democrat party and registered Independent, and has been pointing out a lot of Barry’s inadequacies (and those of McCain’s as well).

Apparently, Kevin sent him an email, and it was the topic of his column of September 12 at the link above. Kevin was very excited that he was the topic of a column, as well as the fact that his views had an impact on someone that it would spur them to write about it.

Corbett actually did a one-on-one interview with John McCain yesterday when he was in Scranton. The volume isn’t good, so you might have to turn up your speaker volume. Corbett did mention today that McCain looked healthy in person, despite how the media and other side spins it.

Finally, for those of you reading this that are familiar with “da valley“, check out Let’s Name The Baby Kielbasa (and click the audio link at the bottom to hear Corbett sing).

Yes, I just realized 11 minutes after publishing this as “Hectic”, that it is my 100th WordPress post, so I changed the title. Other than that, no fireworks, no special graphics, nothing other than the title.

Not much to report health-wise, except that I’m glad that I got my AFO’s (orthotics that support my ankles and feet that allow me to walk without tripping) adjusted today, as I haven’t been going for walks for 2 weeks, and can feel a big difference).

Nothing new here, but I haven’t been sleeping well. I can fall asleep, but I wake up numerous times. I live with it, but I don’t want to start on a “sleeper” such as Ambien, because it may work initially, but then probably wears off. In other words, if I don’t take it, I’ll continue to have sleep problems, and if I do take it, I’ll probably continue to have sleep problems. I have an appointment with my regular doctor this week; maybe he has some suggestions.

Work continues to be very hectic, and shortages don’t help. I mentioned the last time that there is a nationwide shortage of Rabies vaccine. For 3 of the 4 workdays last week, I made and received numerous phone calls from a family with several children, who have a problem with bats getting into their house. I had to call the regional State Health Department office, and since the issue was clouded by the fact that they were previously immunized, and their situation presented several “gray areas“, the regional Health Department nurse ended up calling the state office in Harrisburg, and they called the CDC in Atlanta. When I left on Friday, I thought I had everything settled, but they ended up trying to straighten everything out through Sunday.

And of course, there’s another shortage: pharmacies are having a difficult time obtaining Fluoride. I have no idea why there is a shortage, but the pharmacy in our clinic has it on back order, and doesn’t know when it will be available. In the meantime, some parents are worried, and want to know what to do. Actually, it’s quite simple: if it’s unavailable, and you run out, then you don’t give it. There is no over the counter substitute. Put in perspective, if your kid goes without fluoride for a few weeks or months, it’s just not the same as a seizure patient being without meds for the same amount of time, or a cardiac patient being without Digoxin, or a diabetic going without insulin; you get the picture.
On the weekend, I also had a hectic time at work. Due to privacy considerations, I can’t go in to details, but suffice it to say that at one point I was probably 200/120, and left work quite angry at a family member who, shall I say, did not have the patient’s best interest in mind when a serious situation developed. It’s a chronic problem that had been in remission, but now has been occurring with more regularity, and the family member felt it to be an inconvenience that interrupted important income-producing activities. ‘Nuff said.

Clear the roads; our son Kevin got his learner’s permit last week. Actually, he’s doing a really good job with driving. I let him drive on Friday when we went to Wilkes-Barre. He quickly proved that he’s a chip off the old block, when he got behind a 100+ year old driver that was going very slow, and he passed her (legally). It’s only a matter of time before the expletives start spewing out…

Fannie Mae and Freddie Mac bailout. Bad idea, and some people are gonna get REALLY rich off this one. If these agencies messed up, then the market should decide their fate; the taxpayers should not be providing the money to add to the wealth of those who screwed up.

Barack Obama is now criticizing Sarah Palin for hiring a lobbyist to secure “pork” for Wasilla when she was mayor.  Barack should first take a look at what’s going on in Joe Biden’s hometown of Scranton.  Scranton is the county seat of Lackawanna County, and the Democrat Majority Commissioners of that county have hired a federal lobbying firm to secure money for the county. Sounds a lot like what Barack was criticizing Palin for….

You may have seen me describe a Sunday at work as a (number) Buggy Sunday. Let me explain.

I have a job on the weekends with a nursing agency (different employer than my full time weekday job). It’s in a rural area of Pennsylvania that is an exit off of Interstate 80, and has numerous Amish and Mennonite farms.

On Saturdays, I rarely see any Amish, but on Sunday, that’s a different story.

The Amish, from what I’m told, hold church services in a different home each week. Invariably, I either pass a buggy (or several) on my way to work, or see them going past the house during the day (the house I work at is on a dirt road with farmland surrounding it).

Yes, it’s the 21st century, and there are still people using horses to pull wagons and buggys.

As for the types of buggies, there are 2 basic types; those with a cab, and those that are an open wagon. From what I’m told, the open wagon type are the “courting” buggies. And yes, the Amish DO go parking on dates, usually in a field. My friend lives in Amish country, and jokes that she’s seen these courting buggies rocking in the corn fields (jokes about it, but has actually seen it). She wonders how difficult it is for the male to get the females dress open, as they use straight pins rather than buttons (OUCH!).

To get back on the subject, I categorize each Sunday by the number of Amish buggies I see all day. Usually, it’s a 4 or 5 Buggy Sunday, but I’ve seen 12 to 14 Buggy Sunday’s before.

I originally had this as a page, but decided to convert it to a post. I will refer to this in future posts so that I don’t have to explain it each time.

This past weekend, we had 2 restaurant experiences; 1 good and 1 bad.

The bad: Grotto Pizza at Harvey’s Lake. For those not in the area, Grotto Pizza, formerly “Joe’s Grotto” (when I was a kid) is very popular both here and in Rehoboth Beach, Delaware. I’ve been going getting pizza from there since the late 60′s. There are 3 in our area. The one is in Edwardsville, and we stopped going there after seeing less-than-hygienic conditions. We then started going to the one at the Wyoming Valley Mall, but after 4 straight visits with extremely poor service, we stopped going there. And Friday night, I watched the bus boy wipe a seat off and then use the same cloth to wipe off the table. I mentioned it to the manager, and she could care less, but said she would tell him about it. Well, about 15 minutes later, the same bus boy dropped a rag on the floor, picked it up, shook it out, and then wiped ANOTHER table off with it. I’m done there. Also, we each had a soda, Jackie had a salad, and we each had a personal pizza, and the bill was $27 plus the tip.

The good: Romano’s Macaroni Grill. On Saturday, we drove to Lancaster on a whim, and went to Romano’s Macaroni Grill. It was very clean, the service and the food was fantastic, and the bill for 2 DINNERS was only $4 more than for 2 PIZZAs the night before.

As I mentioned last week, Jackie had a meeting with the superintendent about her not getting the job (he called the meeting, not her). Well, yesterday, she got a message on her voice mail from the superintendent that he would like to talk to her about their meeting last week. She called him back, but he was on the phone, and is supposed to call her back. Perhaps we have someone here who is a little worried about something?

And speaking of her former job, Jackie was visited at work last week by a police officer serving her a subpoena. She had a student who punched a hole in the wall and caused some other damage, so she was subpoenaed to appear in court. She went today, and after 3 hours, got to leave without testifying: the student plead guilty. The school district will pay her for attending, since she had to take a day off without pay from her summer job, and will also give her mileage reimbursement, since the hearing is 25 miles way to Wilkes-Barre.

We saw a very depressing, while at the same time inspiration movie over the weekend: “The Pursuit Of Happyness”. It stars Will Smith and his son; I HIGHLY recommend it, and it’s based on a true story.

I’m getting even MORE lab work done, but this is for the Procrit. Total Iron Binding Capacity, CBC (which I always get whenever I get labs), Peripheral Smear, and Ferritin. I’ll get these done next week with my next routine labs. I did get my Procrit delivered today, and had it given to me by a co-worker (it’s a shot).

I’m going through my music collection (CDs), and ripping them to my hard drive. That way, I won’t have to go to the basement to retrieve a CD in order to listen, and I’ll be able to add it to my Ipod if I want. So far, I found some “interesting” albums, such as “If I Were A Carpenter” (I grew up listening to my mother playing her Carpenters 8 Track tapes), Tower of Power’s “Back to Oakland” (funk album that I listened to when I was in high school; T of P has an awesome horn section, and I love “Squib Cakes” with it’s Hammond B3 organ and Leslie Speaker), The Badlees “River Songs” (my first roommate was their manager, and another guy in the band was one of my roommates while student teaching), Phil Woods “I Remember” (awesome Jazz album by an awesome saxophonist),  Brahms Sym. 2 and Haydn Variations, and a bunch of other obscure albums. I also have an extensive classical collection from when I was in college, as well as some Alternative albums that I listen to. Basically, I listen to just about anything.

I continue to walk every day on my lunch break. I have a new route, which takes me up a fairly large incline. I feel much better, but have to watch my legs. I had some skin breakdown from my orthotics. Today,  I put lotion on the areas, and it was much better.