CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

In the Mid-Atlantic region, we have an electronic toll collection system called EZ Pass, that allows you to pass right through the toll booth without stopping.

Well, a State Trooper here in Pennsylvania hit the motherlode when he pulled over a trucker. Not only did he have a stolen EZ Pass under his front bumper (and avoided over $500k in tolls) and was carrying cargo that was 17 tons over the limit, but he apparently was also stealing diesel from other truckers,  and had a split-axle trailer with a modified air system that can lift the axles over toll indicators, with mufflers that can prevent toll collectors from hearing the axles being raised. 

I would say that this guy is screwed (and rightfully so). 

My other blog: http://chronicpositivity.com/

Stowers Institute discovers possible cause of polycystic kidney disease - I’ve heard several theories about the cause of PKD, which is currently known as a hereditary disease. One such theory is that it is caused by an infectious disease. Now, a researcher postulates that a gene mutation occurs from being disrupted by Tumor Necrosis Factor, and that Enbrel may be a treatment.

Low Vitamin D, Anemia Linked - more interesting research on Vitamin D. The study compared those with impaired renal function to those with normal renal function, and found that those with impaired renal function and low Vitamin D levels were at a much higher risk for anemia. “Data show that supplementation with 25 (OH) D is associated with reductions in pro-inflammatory cytokines”  It’s also interesting to note that a study of over 16,000 participants (not necessarily renal patients) showed that Vitamin D deficiency was significantly associated with increasing prevalence of CVD (cardio vascular disease) in the entire study population.

10 Surprising Places Where Germs Lurk - I found this article personally interesting, since I am currently immunosupressed.   Of course, some of the places are well known, such as grocery cart handles, gym equipment, and the shower curtain. But did you ever consider your vacuum, the lemon wedge in your drink, or the menu in a restuarant?  (hat tip to WhiteCoat Rants) 

Weight Gain Increases Risks To Kidneys – gaining weight while remaining within normal range increases risk of chronic kidney disease.

Bariatric Surgery May Help Prevent Infections – interesting study. Roux-en-Y Gastric Bypass may not only help prevent infections, but also prevent cancer.

It’s already been 9 weeks since my kidney transplant. The only “issues” I’ve had is the current low white blood cell count (Neutropenia), some arm pain for the first few weeks after the surgery (most likely from the positioning while under anesthesia), and some minor side effects which have all but gone away (hand tremors from the Prograf and diarrhea from the Magnesium and CellCept).

I have noticed that the Prograf hand tremors are much improved. The surgeon told me I could stop my Magnesium, but I have continued it (3 tabs/day), and I think that it has helped. The hand tremors could be mainly from the neuropathy, and worsened by the Prograf. Anyway, they checked my Magnesium level on June 25, and it is normal, but not by much, and that’s even with 1200 mg/day of Magnesium Oxide.

I did cut my Valcyte back to 450 mg once a day (from twice a day), but it may take a while to see how much that will increase my white blood cell count.  The other “culprit” with the white count is CellCept. One of the side effects of that is “severe neutropenia”, which, if it’s going to happen, will occur between days 31-180, and may require a dose adjustment or temporary halt in therapy. My guess is that since my dose of CellCept is already lower than most (from what I’ve seen, 1000 mg twice a day is common, while mine is 500 mg twice a day), they didn’t want to mess with that. Plus, Valcyte is to prevent CMV, and my last test showed that I don’t have it (despite the CMV+ kidney in my CMV- body). 

I added a ClustrMap “widget” to the right hand sidebar. It tracks visits to this blog on a world map, and is updated daily (if you click on it, a larger map will appear, making it easier to see more specifically where visitors are from). So far, after 2 days, people from 3 continents have looked at my blog, although Antarctica is not yet represented

 

As I mentioned, I’d love to get out and work in the yard. The other day, I found out that I’m not alone in that sentiment. A doctor I work with was recently diagnosed with Lymphoma and is undergoing chemotherapy. We were talking, and he was saying that it’s a tough adjustment, because he feels lousy for the weekend after chemo, the steroids give him insomnia, and he can’t work outside in the yard. So, I’m certainly not alone (chemo suppresses the immune system as well, so he has to be careful about opportunistic infections).

Another co-worker asked me some questions about her father. He’s 2 years older than me, and has diabetes for 28 years (not sure if Type I or II). He has low vision, poor hearing, and his kidney function dropped within a week from 28% to 21%, his Hemoglobin A1C is ~14 (that’s not good), and he was put on a 1 liter a day fluid restriction due to edema. He has a fistula in, but won’t go for a transplant evaluation and is also extremely hesitant about dialysis. I told her that he can call me go talk about it, as I can certainly understand his apprehension about dialysis. The advantage he’ll have is that he will go to the same dialysis unit I went to, and the staff and patients there are all very nice, making it tolerable. Even though his GFR is 21%, he is already building up fluid, so my guess is that he will need dialysis very shortly. He’s stuck in the house, so maybe getting out 3 days a week will actually help his mental status.

Accident update: I was talking to Derek’s step-father this morning, and told me that Derek WASN’T wearing a seatbelt, but that if he was, he would have been decapitated. We drove by this morning, and there were skid marks, and I saw the trailer he hit (no cab attached). It was sort of a “fifth-wheel” type trailer, with the front elevated above the rest of the trailer. Here is a pic in the local paper of the Dodge Nitro that Derek was driving (clickable thumbnail):

I admit it. I am a pyromaniac, and the apple (as in Kevin) doesn’t fall far from the tree. The Fourth of July is only surpassed in importance by Christmas in our household.

Yesterday, as Kevin was lighting off some bottle rockets, our GoldenDoodle was very curious and totally fearless (or maybe naive would be a better word; if he were a gun dog, I don’t think gun shyness would be a problem). We had to yell at him to get away from the launch tube, since it was conceivable that he would get hit in the face when the rocket went off.

Check this out:

Tonight, we went to Kevin’s friend’s house to watch the local fireworks display, as well as Kevin’s and his friend’s fireworks.

They started lighting them off after the local display, and we then heard sirens. Eventually, a fire truck and ambulance flew by and stopped down the road near the football field.

Kevin’s friend (Dalton) and his family took off in their cars to see the accident, and their fears were soon realized; Dalton’s brother Derek, who is on leave from Walter Reed Hospital, was in a car accident right down the street from his parents’ house. The brother is in the Marine Corps, and was severely injured by a roadside bomb about 2(?) years ago. Derek lost a leg, almost died numerous times (mainly from septic shock), has had dozens of surgeries, and tonight, hit a tractor trailer with his vehicle (I think the tractor trailer was parked). 

He was taken by Life Flight to Geisinger (the regional trauma center), and ironically, the tow truck passed his family’s house afterwards. From the look of the vehicle, it doesn’t look good. The driver’s side was demolished (he was driving and was alone in the vehicle). We’ll know more tomorrow.

Kevin’s friend Dalton punched a stone wall when he found out, and I’m sure he has a fracture. I told him to get it looked at, but doubt that he will. And, Dalton’s older brother joined the Marines, and is going to Iraq at the end of the summer.

Update (Saturday morning): Derek is fine, and was released from the hospital. Thank god for airbags and seatbelts. Also, the wall won. Dalton went to the ED this morning, and is now sporting a cast on his right hand and arm.

I’ve been fairly busy this week, with going back to work, finishing some odds and ends, etc., so I haven’t been updating my “Daily Vital Signs” page. I did do that today. My BP has been decent, weight is stable, and no fever. That last one is extremely important, as my blood work yesterday showed Neutropenia (my ANC is 0.88, which would indicate moderate Neutropenia).

I did speak to the Transplant Nurse, and the surgeon is decreasing my Valcyte to 450 mg once a day (it had been twice a day). It will take a little while for my white count to rebound, but if it doesn’t, they will probably start me on Neupogen.

I feel great, except last night, the fact that I’m now back to work full-time apparently caught up to me, because I was asleep by 8pm, and didn’t get up until 6 am today (except for some bathroom breaks).

Another thing I’m not used to is that I make about 4 trips to the bathroom while at work. Of course, I hardly ever used the work bathroom when I was on dialysis.

I can tell a BIG difference in my brain function since returning. I’m no longer “clouded” mentally. Prior to surgery, it was definitely noticeable, and made me frustrated.  Now, I can think so much more clearly.

The “theme of the week” for phone calls seemed to be MRSA, which is Staph bacteria that are resistant to certain medications. I must have had at least 1-2 calls on this each day.  Today, I spoke with the mother of an infant who had a cellulitis and abcess of the buttock from MRSA, and was hospitalized 2 months ago for it. Today, they are out of state, and his leg has a lesion exactly as before, but not yet as bad. So, he earned himself a visit to an out-of-state Emergency Department.

We also had a child admitted to ICU today with a heart rate of 270 and symptomatic. She has SVT. Although we have several admissions to the hospital each week, rarely is it to the PICU. Once they get her heart rate down, I’m sure that she’ll do OK.

I did post on MyKidney about Informed Consent with Transplants. Check it out if you have a minute.

Happy Fourth of July everyone!

I received an email today from the “IRS” about the Economic Stimulus Rebate. I have to admit; this looks pretty realistic. However, when you “hover” your cursor over the “click here”, the address is www.plein-gaz.com/fond/fond.php. I highly doubt that the IRS uses this address to submit Stimulus Refund Check forms.  

Do NOT enter any real information in the form link; they are trying to get your bank account info. Of course, if you use a fake name and information, that will hopefully give these phishers a little bit of frustration.

Economic Stimulus Refund Â

 Internal Revenue Service · 1111 Constitution Ave. N.W. · Washington DC 20535 · 800-439-1420

 

on July 4, 2008 Add to Calendar

 

Addendum: Apparently, this will be a VERY popular phishing scheme. I just got another one linked to http://118-14.bbned.dsl.internl.net/www.irs.gov/online_form/0,,id=96596,00.html. 

Addendum: apparently, this will be a very POPULAR PHISHING SCHEME, as I just got another one with the “click here” link to http://118-14.bbned.dsl.internl.net/www.irs.gov/online_form/0,,id=96596,00.html