Transplantation

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ANGER

If this wasn't already enough to make my head feel like exploding, then getting a bill from my former pharmacy company, PharmaCare, was.

Um, I owe you $1037.58? From JUNE? Not to mention, the forthcoming bills for drugs from July, August and September? I don't think so.

There is a reason why (and I know I'm lucky, here) that I have two insurances - its so I won't get unexpected bills.

It seems to me that I've never gotten a bill, after-the-fact, from CVS or Walgreens or the freakin' grocery store pharmacy for that matter... SIX MONTHS LATER. Its usually "here's my insurance cards," and then they tell me if the drugs require co-pays (never more than $7 each) and then I PAY the co-pays and then I get my drugs. Ever try to get prescriptions filled without paying for them in advance? Doesn't really work, does it?

According to PharmaCare it does. They apparently went on some "assumption" (WHAT?) that [Other Insurance Company] would pay for the dugs before they actually gave me the drugs. The Pharmacare rep said, "Well, I guess we thought [Other Insurance Company] was going to pay for the drugs when you got them in June, so that's why you only paid the co-pays then. We didn't know they weren't going to not pay for them, so that's why we have to bill you now."

YOU THOUGHT? I'm sorry I don't buy that. Not for a second. Sound fishy to you? Yeah.

What was even more unexpected was PharmaCare's answer to my questioning if they even BILLED Other Insurance Company: "[Other Insurance Company] won't pay the 20% for your anti-rejection drugs that Medicare doesn't cover..."

WHAT?

NO. They're wrong (at least according to Other Insurance Company, they're wrong) and I'm angry that I even had to listen to PharmaCare's stupid rep tell me that Other Insurance Company rejected their claim for payment. RIGHT! When I called Other Insurance Company (two different numbers, in two different departments, mind you) I was told that PharmaCare hadn't even billed them.

While I haven't had any problems with the local PharmaCare and in actually getting the medications from them... I have been REALLY disappointed that I allowed myself to even be talked into using them as a pharmacy to begin with. I've always used CVS pharmacy and never had any problems. However, when I was still in the hospital getting my transplant, I was 'informed' that I needed to use PharmaCare because they are a "specialty" pharmacy (BULL) that could handle my transplant drugs better than a "regular" pharmacy. Of course I've since figured out that, NO, I can still use my "regular" pharmacy, but damnit. Why did I get taken advantage of while I was in the hospital?

You'd think someone like me would've seen that coming.

Life given, life taken

It saddens me to read the headlines and watch the news reports about the four Chicago-area transplant recipients who have contracted HIV from their deceased transplant donor. The very thought of what has happened is heavy on my heart.

Just as the chance of a healthy life is given, it is snatched away.

I can't even imagine how the recipients and their families feel. The emotions of grief and anger, come to mind - a gift that was so freely shared, selflessly given to save a life, has now turned into a medical endeavor ever-increasing in complexity. The transplants these four people received, new organs intended to save their lives, might now mean a quicker route to death's door.

While events like this are very rare, it was one of the outcomes (ie. receiving a transmittable disease) that I had to prepare myself for, and accept, before I could go forward with a kidney transplant. It was extremely important to me to be prepared for every single possible outcome before I underwent a transplant.

I made the conscious decision to wait for four years on dialysis before pursuing the transplant - I believed, and still believe, that knowing I was at peace with whatever happened would give me the best possible chance.

No amount of peace has been afforded to the four transplant patients in Chicago. No fleeting opportunity for possible health has been afforded. Dreams of futures have become nightmares of what seemed almost impossible...

I'm sure they never expected to receive an organ along with a good dose of HIV - my heart goes out to all of them, and like most of you, I wish I could do something... but the only thing I can do is hope, wish, pray that there will be some way...

Please, if you or anyone you know have ever been touched by organ donation, send good thoughts (and prayers) their way - they'll need it.

Today's Kidney Education: "In 1994, the Centers for Disease Control (CDC) issued guidelines for transplant professionals to identify and try to minimize the risk of transmission of HIV. From the time those guidelines were issued until the present instance, there have been no documented instances of HIV transmission through organ transplantation in the United States." OPTN/UNOS Statement Regarding HIV and Hepatitis C Transmission through Organ Transplantation

Post-Transplant Essentials: Hand Sanitizer

While you're still in the hospital after you've received your kidney transplant you'll start to notice you've developed a new phobia: GERMS!

Your post-transplant medications work to prevent your body from rejecting your new organ by lowering your White Blood Cells (WBCs). The downside to lowering your WBCs is that your body has less defenses to fight germs and infection.

There will be many things you can do to minimize your exposure to germs and infection. Your doctor will make recommendations for your lifestyle such as wearing a face mask, not going into large public crowds and washing your hands properly - but one of the easiest things you can do is purchase hand sanitizer, and use it diligently. Also as a general precaution, it will be pertinent to ask your friends and family (or anyone who comes into direct contact with you) to sanitize their hands before touching you or anything you might touch.

Hand sanitizer is not a complete substitute for hand-washing. After your transplant, you should wash your hands frequently, and use hand sanitizer in addition to washing, but especially around, public places. On Purel's website you can find a basic FAQ about what everyone should know about hand hygiene products.

My favorite hand sanitizer is CVS Instant Hand Sanitizing Spray With Aloe. It mists on and leaves hands soft and fresh-smelling. Another convenient and useful product I like is the CVS Hand Sanitizer Gel Packets that can be tucked into any small space (even your wallet...)

With all the immuno-suppressant and anti-rejection medication you'll be on, you have every right to be concerned about GERMS. So - in order to keep those germs away, preparing before your transplant by stocking up on hand sanitizer is an easy (and inexpensive) idea.

Today's Kidney Education: "According to the CDC, the simple act of hand washing is the single most important means of preventing the spread of vital and bacterial infections". Hand Washing 101

Post-Transplant Essentials: Snacks (that you'll actually consume)

Have you ever heard of the idea (myth?) of post-transplant cellular memory? Before my transplant my brother would joke with me and say that I'd better stock up on popcorn and M*A*S*H DVD re-runs, because once I got his kidney, I'd be craving both. IMHO the idea of cellular memory is a bit far-fetched, but lately one of my food cravings has been, you guessed it, POPCORN.

Even though my brother loves popcorn and it just so happens to seem that I'm simultaneously also craving popcorn, I don't really believe its his kidney telling me what to snack on. More likely, its my own body telling me I need sodium.

Before your transplant, stock up on easy-to-grab snacks and comfort foods. Foods higher in sodium, potassium, magnesium and phosphorous are preferred post-trasplant (unless otherwise directed by your doctor) and comfort foods will (hopefully) motivate you to eat even when you might not be feeling your best. Believe it or not, the foods you've been restricted in eating while in kidney failure, will be some of the ones you'll need to have handy post-transplant.

When your new kidney is first placed in your body it normally can take days, weeks or even months to adjust and begin to efficiently regulate chemicals, especially electrolytes. In my case, my sodium, potassium and magnesium were too low. For more than two months I had to actually take prescription supplements to keep my levels closer to normal. Even so, my doctor kept telling me "EAT MORE SALT!" (one of the weirdest things a post-kidney-failure person can hear!!)

Here are a few snack items to consider purchasing before your surgery so you'll have them on hand after: Potato chips; microwave popcorn in "individual-sized" packs; low-fat mozzarella cheese sticks; chicken broth or chicken soup; yogurt; canned tuna; whole-wheat bread; bananas; applesauce; graham crackers; saltine crackers. Your dialysis or transplant/hospital dietitian can give you even more ideas.

A bit of a note: As your body heals and your health returns to a more "normal" state, you will need to eat a "regular", healthy well-rounded diet (plenty of fruits and veggies, low in fat and carbs, etc.) just like everyone else. However, the suggestions I've made above have more to do with an immediate post-surgery time when eating can sometimes seem... unappetizing.

In my next "Post-Transplant Essentials" post, I'll be talking about drinks and various fluids to have in the kitchen to accompany your snacks.

Happy post-transplant snacking!

Today's Kidney Education: "There is no magical "Transplant Diet..." Life After Transplant: Diet and Weight Gain

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