CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

It went MUCH better today. I only gained 2.3 kg, so no major fluid and electrolyte shifts and thus no cramps. 

I gave my sister a ride home from the hospital; she had her yearly transplant appointments today (nuclear med stress test, surgeon, social worker, transplant coordinator, business office coordinator…). 

Beginning wt: 89.8 kg. End wt: 87.5  kg.

 A day to remember. I had a major weight gain (fluid) since Saturday, and paid the price today. I gained 5.4 kg, which means that they had to take that much off over 4 hours. About 2 hours into it, I started with cramps in my thighs. When I leaned forward to try to massage them, I got cramps in my abdomen. They stopped the part that takes out the fluid, and gave me a half liter of saline, and then a syringe of hypertonic saline, and started the fluid removal several minutes later. I got some more cramps, but toughed it out, but I’m still getting them at home.  I have already begun conserving my intake so that won’t happen again. I was only a half kilo above my dry weight, due to the period of time suspending fluid removal and the normal saline. 

Beginning wt: 92.9 kg, End wt: 88.0 kg. 

My car is fixed; picked it up last night. It was just a radiator hose, and it works fine now.

 Kelsea, our 12+ year old Springer Spaniel, was depressed recently. Very mopey, disinterested in most everything, and not overly friendly. However, that all changed this weekend when she got her haircut. 

Amazingly, she gets depressed as her hair gets longer. We get her shaved every 3 months and she loves it! It’s better than any anti-depressant to get her out of her “funk”.  Since her hair cut, she greets us at the door, she jumps up for us to pet her, she sits on our lap, and her affect is definitely brighter! She also plays with Digger more often. 

She has some health problems. She is diagnosed with Rheumatoid Arthritis, which up until recently was well controlled with Imuran, a drug that is used in people with kidney transplants and auto-immune disorders. She doesn’t run as much as before, and is having more problems getting onto the furniture (our dogs are allowed on our furniture). However, she doesn’t whine or “complain”, she just goes with the flow….

 This is what you get with a “single payer” healthcare system.  Healthcare is just for the young and healthy?

My weight gain between treatments is definitely more (as is my urine output definitely less), but I’m still not going above the 3-5% weight gain between treatments. I’m definitely cutting back on fluids, and when I do drink, I get an overwhelming urge to “chug”. I guess it’s one of those “you want it more when you can’t have it” type of things. 

Dialysis went well. I slept through more than half of it (there is NOTHING on TV on Saturday’s that is worth watching).  Beginning wt: 90.3 kg. End wt: 87.5 kg.  

I took my first monthly dose of Vitamin D yesterday (50,000 units). I noticed that several others at dialysis had been given prescriptions as well. I continue to wonder how many people WITHOUT kidney disease are Vitamin D deficient, especially with the push to avoid the sun and use sunscreen?

We drove to Bethlehem last night after dialysis and went out to dinner with a friend. It’s a 90 minute drive, and on the way back, I heard an intermittent squeal from under the hood, and then noticed that the temperature guage was inching upward. We made it home, but when I parked, there was steam coming from under the hood. It happened to be a small hole in the radiator hose. The coolant was spraying onto the engine as well as the belts (thus the squealing sound was from wet belts). So, I had to call off work today due to lack of transportation, since Jackie needed her vehicle to drive up to her mother’s to pick up Kevin. I felt bad about calling in, but I shouldn’t'; I’ve been on this “case” for 5 years, and only called in three times before; once I had a fever, another time I had emergency brain surgery, and the last time was when I started dialysis. 

I did take advantage of the time off, and took a massive “nap” today (10am-2:30). I find that when I do this, I am able to recharge.  I guess I take for granted how much the kidney failure kicks my butt, and taking a periodic “rest day” seems to be needed/seems to help.

 I slept for about 90 minutes of dialysis yesterday. No problems with my access, but I did get some moderate cramping towards the end.  Beginning wt: 90.3 kg. End wt: 87.5 kg.

I had a new prescription waiting for me when I got to dialysis. I’m starting Ergocalciferol, and will get one 50,000 unit capsule monthly for 6 months. I’m assuming they’ll recheck my Vitamin D level again at that point. It’s just amazing how much the kidneys do for the body; you don’t realize how complex an organ it is until yours don’t work.  

I started doing a little research on Vitamin D, and found this website.  While I haven’t gone through the whole site, one of the theories is that autism may be caused by Vitamin D deficiency. Now, I’m not usually one to be a conspiracy theorist (e.g. the evil drug companies know that vaccines cause autism yet continue to push vaccines; vaccines causing autism is for the most part a bunch of bull feces), or one to quickly sound alarms over UNPROVEN theories, yet this one is intriguing: the rate of autism has climbed in recent years, so is it possible that a Vitamin D deficiency contributes to this? Vitamin D is manufactured by the body after exposure to sunlight. And what are Pediatricians telling parents? Sunlight can cause skin cancer, so cover your children well, and slather on the sunscreen! I’m not at all saying I AGREE with this theory, as it’s not been fully studied, but it SOUNDS as though it MAY be something reasonable to look at (the only problem is that when some people get wind of this theory, they accept it as fact BEFORE it is proven, and that’s how you get all of these whacko websites touting a particular theory without scientific basis/study). 

I took a vacation day today so that I could take Kevin for his Pulmonary Function Study. He’s in a chronic disease management program for his asthma, which is sponsered by our HMO and my employer, and offers financial incentives to meet certain goals. So, the nurse asked for him to have the study, which is a good idea, as they now have a baseline for his lung function in case they need to compare it in the future.

Here’s a shining example of what happens when the government tries to “fix” a problem.  

 I had middle-of-the-month labs yesterday. Everything is basically good; my phosphorous is normal (due to a cut back in drinking milk), my Hemoglobin is stable, and my Vitamin D level (this is a new lab that they started, and will be done yearly) is a little low. I haven’t received any Vitamin D supplements in over a month, due to my PTH being too low (Zemplar is what I was getting).

25-OHD3 indicates both endogenous production and
supplementation. 25-OHD2 is an indicator of
exogenous sources such as diet or supplementation.
Therapy is based on measurement of Total 25-OHD,
with levels <20 ng/mL indicative of Vitamin D
deficiency while levels between 20 ng/mL and 30
ng/mL suggest insufficiency. Optimal levels are
>30 ng/mL. 

I didn’t sleep at dialysis today, despite the fact that I was awake at 3:30 am and couldn’t get back to sleep. 

I almost damaged my fistula today. The needle goes in at a 30-45 degree angle. I bent over to take my shoes and splints off, and it caused my needle to move to a 90 degree angle. The nurse saw it, and got it back into the correct position. The worry was that it would have gone down and out the bottom of the fistula, causing a major inflitrate. 

I had major cramps at the end today. My machine alarmed as well, so I ended 10 minutes early (but I still was under my dry weight, so that’s OK). 

My BP’s are still lower than when I started dialysis; today, they averaged low 100′s over 50′s. The Nephrologist asked me if I was tolerating my BP’s, and I told him yes (I am; I haven’t had any lightheadedness since last week).

Beginning wt: 91.3 kg. End wt: 87.4 kg.

Nothing exciting at dialysis yesterday. Got my iron and Epogen, and slept for about 20 minutes. Minimal machine alarms, and my fistula is working well. 

The guy next to me was from an in-patient unit; thus, they brought him down in a bed. They tried putting a PICC line in while he was being dialyzed  (an IV inserted into the arm that goes up the vein into one of the major veins leading to the heart), but weren’t successful (the line was for them to draw his labs). The guy was probably in his mid to late 40′s, but looked 10-15 years older then he probably was. He also had a ”No Code” bracelet on.  He was disoriented; he kept asking the nurse for a cigarette….

Beginning wt: 91.2 kg. End wt: 87.3 kg.

Digger was a bad boy last night. We went to the store to get my lunch for work today, and I put everything away, except for a box of Little Debbie’s Fig Bars (it was on the back of the counter. I was on the computer, and Jackie was taking a bath, and unbeknownst to us, Digger had snatched the box of fig bars, and ate all but one, in addition to the cellophane wrappers and part of the box. We’re just not used to having a dog that can reach things on the counter. Surprisingly, he didn’t get sick. 

We have Verizon DSL along with Verizon Yahoo. They provide free Norton Internet Security Suite, and we use that. I was surfing the Verizon site the other day, and they have a security software available for download, so I tried it. The Norton usually just picks up 1 cookie each time, yet the Verizon software picked up a virus/trojan horse as well as about 10 spywares (I realize that “spyware” is subjective, and each software has their own set of guidelines in labeling files as spyware). So, I’m considering paying for the Verizon software (it’s a trial download), or trying something else. I’m concerned that the Norton will not protect my computer adequately.