Keep the government off my Medicare!

I got my Medicare card in the mail today, so it’s officially MY Medicare, too.

Long story short…

Since most people who wind up on dialysis aren’t working, it’s expected they’ll get on Medicare, which every person with ESRD (End Stage Renal Disease) is entitled to. A bunch of good-for-nothing victims, leeching off the government teat, that’s what they are. I’m not sure why those limbness, barely-there dialysis patients I had the pleasure of hanging out with for two years didn’t just get jobs.

Technically, my Medicare, if I opted for it, would’ve gone into effective the third month after I started dialysis, so November 2009, since I started dialysis in August of that year.

I didn’t opt for it. I’ve had good insurance with last job and my current one. It didn’t make sense to pay for Medicare premiums that I didn’t really need. Medicare would pay 20% of costs. The remaining 80% would fall to the private insurance.

However, Medicare pays for all hospital stays, so, I suspect, had I opted for Medicare, I might have actually gotten that botched transplant at Duke in March 2011, after all. Instead there was that insurance snafu, and I waited another 3 1/2 months, receiving a kidney down in Charlotte.

Anyway, many months back, I found there was a problem with Cigna paying my bills. They assumed I was on Medicare, and I kept telling them I wasn’t. I was told it would all be cleared up. But it wasn’t.

30 months after that initial eligibility date, I should have signed up for Medicare, because that’s when my private insurance plan reverts to paying just 20% of costs. Medicare is then primary. Again, most people would’ve already signed up for Medicare 30 months earlier, so this would not be an issue.

I have to be on Medicare. So don’t f*** with my Medicare.

Ok, long story still moderately long.

Shit…shingles?

I went through the Mayo Clinic website’s slides of common rashes. Nope…nope…nope…and then, finally…shit, shingles?

This would explain the half-body aches I’ve been having. But the rash is the tell-tale sign. Not on my face or by my eye, thankfully.

It’s always fun to blog about serious medical conditions. If it is, indeed, shingles, I’ll have some legitimate griping to do. It sees to get a lot worse before it gets better. Being immunosuppressed might even make this a little scary. (You see “rare cases…death” in articles about shingles).

I was thinking a few days ago that it would really suck to die from something stupid like West Nile Disease. (It can be quite dangerous for the immunosuppressed). Shingles would be on that list of stupid things to die from. (And by “stupid” in this context, I mean illnesses that don’t kill most of the people afflicted. Malignant brain tumors, pancreatic cancer, and speeding drunk drivers…also stupid causes of deaths. What’s not a stupid thing to die from? Natural causes at age 95 (see Phyllis Diller)? I don’t know…)

If it’s not shingles, maybe it’s just an allergy to shitty neighbors.

I’ll go to urgent care in the morning.

End of prednisone

Have I really been on prednisone for six friggin’ months? I would’ve come off three months ago, but my Durham neph overruled my Charlotte neph. I appealed to my Durham neph today, and I get to come off of it. I’m really, really glad, both to get off of it (gradually over the next month) and that I never turned into Jerry Lewis.

(Other than the surge of energy I had in October, I have not enjoyed my prednisone.)

Valganciclovir

aka Valcyte, which is used to treat CMV

I usually don’t read the “patient prescription information” but was curious in this case. I had been taking one tablet a day since the transplant, then stopped it a few weeks ago because of my low white blood cell count (which necessitated the switch from one anti-rejection med to prednisone). Now I’m taking four a day to try to get rid of the CMV.

Valganciclovir is an anti-viral drug. It is changed in the body to the active form of the drug called ganciclovir. Ganciclovir can decrease bone marrow function…This effect can cause anemia, decrease your body’s ability to fight an infection, and cause bleeding problems…Seek immediate medical attention if you develop [a bunch of nasty stuff]…May decrease the ability of men to father a baby…has caused tumors in laboratory animals…should be considered carcinogenic…

It is used to prevent disease caused by CMV in people who have received organ transplants. CMV can lead to serious infections in the body…including CMV retinitis, which can cause blindness…This medication helps control CMV retinitis and decrease the risk of blindness. [It] is not a cure for CMV disase. Some people may have worsening CMV retinitis even with treatment.

Now get this. If you don’t have health insurance, 120 tablets of Valcyte (one month’s worth for me) will cost

$5600

My cost today:

$30

And those kids are worried about their students loans. Where the &*#^ were they when healthcare reform was under assault? How many of them bothered to vote last year? Ok, breathe… Maybe I should’ve posted this ahead of my last post.

Range: Ehhh… Typical Toastie Problem

Range came.
Range had no power.
Installers blamed my electrical circuits.
Flipped breakers several times, no change.
Later, out of curiosity, I tried the burners.
Burners work.
The clock and control don’t work. The oven doesn’t work.
What gives?
Home Depot passed me to GE.
GE understand the problem and was going to send someone out.
But instead of being put on hold, I was returned to the queue.
The new queue rep had no knowledge of my issue. Different computer system starting all over.
A new unit will be sent out Tuesday, even though there’s a decent chance my appliance outlet isn’t fully juiced to 240V.
I need a multimeter. Hoping to procure one from M & E.
Installers supposed to check this themselves first, but the didn’t, and they asked for the 5 out of 5 rating when I get the survey tomorrow.

Bummed by the half-working range, which looks quite nice.

Used the power of my prednisone to start painting tonight. No primer. No blue tape. Just a huge itch to start the project I had planned start 4+ years ago. Orange kitchen. It does not look as cool as I recall. But, so what? I’m so sick of having a white kichen. I am not spending forever on this project. I will repaint if the results are truly horrific. I don’t think they wiil be.

All the non-lockd down fixtures in the kichen–pantry rack, small nook table, el cheapo bookcase, smaller wire shelvin (ideal for microwave)…out in the hallway, awaiting their fate in Kichen 2.0

The long-term view involves a dishwasher and completely new shelves that migt make the most of my challenging galley kitchen. THe current view just needs to be shaked up. Pics to come.

No News Is Good News

No news was good news regarding my post-transplant health throughout September. My creatinine went down to 1.4-1.5, which is great. I didn’t write about it. I only write about bad news. There’s not much therapeutic value to writing about good news. 🙂

Today, the bad news. My white blood cell count has suddenly gotten quite low. A week ago, I was taken off immunosuppressant CellCept in favor of the similar medication Myfortic. Now, I’m off both and have started the dreaded prednisone. Pred has been one of my biggest fears since getting the transplant. Think bloated Jerry Lewis. I learned today that that awful side effect is known as “moon face”. I don’t want moon face. I don’t want to gain 50 pounds. Now, I’m on a fairly low dose, and I’m hoping my leukocyte count quickly goes up and then I won’t be on the prednisone too long.

And my leukocyte count will, I hope, go up quickly since I’m getting a couple of shots of Neupogen. At first, my nephrologists wanted me to go down to Charlotte right away to get these shots. Instead, I gave myself a shot tonight and will do it again tomorrow. I can actually credit Zellouisa for helping me do this so easily. I’ve been giving her insulin shots for awhile now, and she takes them so easily. I also consulted a YouTube video on how to inject yourself with insulin.

Things I Did On My Summer Vacation #1

New KidneyI’ve had most of the summer off and will be returning to work tomorrow. I’ve been meaning to play blog catch-up and write a little bit about some things I’ve been up to, mostly over the last few weeks. But it’s getting late, so maybe I’ll start on that tomorrow night. One of these things, which I think is a fairly significant achievement, still requires another 48 minutes of my time, and I’d like to finish that off before I go to sleep.

I should begin, though, with a brief reflection on what was certainly the most significant event of my summer. Maybe I’ve seemed blasé about it. I haven’t said the things that perhaps one is suppose to say. I haven’t proclaimed that “I have my life back”. I haven’t thanked the various higher powers that others have prayed to.* I haven’t said that “I feel like a new person”. I haven’t figured out what I’ll do with Life 2.0 or how I’ll do it.

Wow, that’s just bloody awful…referring to “Life 2.0″…what a terrible cliché. Then again, so is “bloody awful”.

I have certainly pondered the meaning of this a great deal. It’s been a spiritual experience. *This does not mean I haven’t felt gratitude. Towards what or whom, I shall keep to myself.

So, things I did on my summer vacation…I got a new kidney…

Things #2-7 are far more superficial, but I look forward to writing about them a lot more than I care to say much more about the transplant. I’m sure I’ll return to the topic at some point.

A kidney transplant update because I don’t think I’ve done one in awhile

Actually, it seems to have been about three weeks. No news was good news, I guess you could say.

My creatinine dipped below 2.0, down to 1.9. Still not great, but less worrisome. I’m only getting blood work once a week, and I don’t know what last Thursday’s reading was. This Friday, I’ll call to see about the previous two. The nephrology clinic would’ve called if there was anything to be concerned about.

I was having some incision pain a couple of weeks ago. An ultrasound didn’t turn up anything problematic. Any attempts at full days of activity cause my new kidney to ache a bit.

My worst problem at the moment is these tremors that my pinkies are having. It makes using a cellphone and a laptop a little uncomfortable. Hand tremors are a common side effect of the anti-rejection drug Prograf. My symptoms are not nearly as severe as others I have read about, and there’s little that can be done, as far as I know.

My second biggest side-effect is feeling overheated when neither my body nor my environment actually are. Or, when it’s 95 degrees outside, it feels like 110 to me.

It’s time to return to work, and I’ll do that a week from Tuesday. So this is my last week off.

That’s all, folks.