It was so weird this morning. I got up to take Alek to the bus and I felt really sleepy and kinda sick to my stomach. Sometimes when I wake up in the morning I'm still sleepy from the sleeping pills I take the night before, so that wasn't so unusual. But the stomach-ache thing was kinda weird.

Anyway, I asked Ken to take Alek to his bus and I went back to sleep. When Ken came home he got back in bed with me for about a half hour and then got up to get ready for work. My stomach kept hurting more and more. I went in the bathroom and sat on the floor and then threw up a couple of times until I had dry heaves (I hate dry heaves worse than anything!) I called to Ken (who hadn't left for work, yet) to bring me some water and then I felt like I wasn't going to throw up anymore so I went back to bed. Ken tucked me in and I went back to sleep. I got up again pretty late in the morning and felt fine! My stomach wasn't hurting or anything, I just feel/felt a little weak from the dry heaves.

Weird.  I'm thinking possibly my usual morning meds upset my stomach for some reason.  It doesn't happen often, though.  At least I'm fine now.

My cardiac appointment went really smoothly, today. I loved the cardiologist to bits, he was just so sweet and funny! Its refreshing to have a happy, goofy doctor once in awhile (not that my other docs aren't happy, I guess I'm just used to them...) He joked with me about how doctors have the worst handwriting, and then demonstrated that he DIDN'T have bad handwriting when he wrote some instructions on a script. Ha!
While I was there, they did an EKG and an ECHO and scheduled me for another ECHO-Stress test. This time I get to walk on the treadmill instead of have the awful heart-rate raising drugs, like last time.

The basic diagnosis today was that my heart is enlarged, although not badly. The doctor said that once I get a transplant my heart can and probably will repair itself and go back to a more normal size and function. He also said this enlargement of the heart is due to my kidney disease and (controlled) high BP over the years. At least its not as bad as it could be... 'cause it could be worse. AND, at least I don't have to have another "non-stress" stress test or a cardiac cath... they will let me walk/jog/run on a treadmill like a 'normal' person. :)

My next appointment at the cardiac clinic @ LifeLink is in two weeks, and then another in three weeks with the doctor. Then its the holidays and New Year. But, hopefully by the end of Jan I'll be ready for a transplant!!!

On another note - I saw a couple of people today at LifeLink that I haven't seen in a long time. It was nice to see old friends and catch up a bit on whats been going on in their lives. I used to worry that I would know too many people there (because I do know quite a few who work for or volunteer at LifeLink) because of my various kidney-awareness advocacy projects. I'm not sure why it (once) bothered me to think I'd be seeing these people I know while going through this transplant process; now I'm finding its actually comforting to see familiar faces. Its nice to walk down every hall and recognize someone who says "Hi, Krissi, how're you?"

Tomorrow morning I have a cardiac consultation at LifeLink.  I don't know exactly what to expect; I think maybe I'm just meeting with the cardiologist and finding out if I have to have a cardiac catheterization or if they will just make me take another "non-stress" stress test.  I don't think they will do any actual testing tomorrow, but will schedule it for sometime soon.  I've known since May or June that something is wrong with my heart, but so far no one's been able to tell me exactly what or why.  I'm hoping the cardiologist can read my previous tests tomorrow and give me more information.  And, I hope its not serious or that it will cause a delay in my qualifying for a transplant.  I'm betting that whatever is wrong with my heart has something to do with the fact that I've had kidney disease for so long and/or the stress hemodialysis puts on the heart.

I'm so exhausted today.  I guess its just a 'typical' Monday for me.  I'm tired of being tired.

A couple of days late - but I am thankful for dialysis... and taxes. Yes, you read that right. Some of you might think I'm crazy, but I know there are those of you who understand completely.

Dialysis itself (the technology, the access to treatment, the ever-increasing up-trend in survival rates) is something to be VERY thankful for, and for most of us who experience it and live with kidney failure, we all know why:

In the 30 years since its inception, the Medicare ESRD Program has provided life-saving dialysis treatments to over 1 million people. In the 1960s and early 1970s, prior to passage of the Social Security Amendments of 1972, treatment was limited to a few individuals, as the costs were high and only a limited number of dialysis machines existed. Those who lived near hospitals with dialysis machines often appeared before specially appointed committees to argue for treatment. Those approved by the committee received dialysis, while those denied were left to die of kidney failure.

On that note, I'm a pretty typical patient - I have no private insurance and rely on only Medicare and Medicaid to pay my dialysis bills. I'm young and only had 10 years of working to pay my taxes and SS before I had to start collecting SS Disability to survive. Now... I know who foots the bill for my life -

... which is why I'm thankful for taxes. You taxpayers are paying for me to be alive:

U.S. taxpayers pay much more than the original estimated cost for the Program. In 1972, it was estimated that the Program would cost $250 million. Today, approximately $14 billion is spent on the Medicare ESRD Program.

You know that old saying "the only thing guaranteed in life is death and taxes"? Boy, does it really hit home for someone with ESRD!  Now you know why I'm thankful for dialysis and taxes (and tax-payers!)

Here's to hoping you had a Happy Thanksgiving, too...
Quotes, thanks to AAKP RenaLife Magazine "AAKP Reviews 30 Years of the Medicare ESRD Program"

This is a little weird, being home from dialysis on a Wednesday. I have to keep my fluids in check since I have to wait until Friday to have a Tx. Tomorrow is Thanksgiving and there will be much eating and drinking to be had!

In other news, I changed the colors of the site again - how do you like them? I think they look better than the red/yellow I had up before. The blue/green sort of goes with the "Donate Life" theme. I also added some helpful links in the sidebar to other sites I feel are important.  Check them out...

Every year about this time I post my favorite "renal friendly" recipe for Thanksgiving.  This is very easy to make and oh so delicious :)  Enjoy!

Pumpkin Mousse

1 small pack vanilla or butterscotch instant pudding
2 cups milk
1 16-oz. can pumpkin (not pumpkin pie filling)
1 teaspoon pumpkin pie spice
1 teaspoon cinnamon
1 8-oz. container of Cool Whip

Make the pudding with the milk according to package directions. Add the pumpkin, pumpkin pie spice, and cinnamon. Mix well and fold in the Cool Whip. Makes about 8 1-cup servings.

Variation (this is what I did)

If you cut the milk down to 1 cup and don’t fold in the Cool Whip, the consistency comes out more like pumpkin pie filling. Top the mixture with the Cool Whip instead, and it’s just like eating a pumpkin pie without the crust!!!

Tomorrow, Tuesday, I have dialysis. This holiday schedule has really gotten me messed up on what day it is. I keep thinking tomorrow is Monday and yesterday was Friday (I guess I lost Sat and Sun). On Wednesday I'll spend the day getting ready for Tom (my son's dad) to arrive and for Thanksgiving at Elaine's. This year Ken and I are taking candied yams or sweet potatoes for the feast. This gives me the opportunity to soak them overnight to remove extra potassium (yay! I'm smart!) Instructions for "leaching" potatoes is from the DaVita website:

Leach high potassium vegetables, if including them in your diet. Leaching removes some of the potassium. Ask your renal dietitian which vegetables to leach and how much you can eat. (See instructions for leaching below.)

How to leach vegetables to lower potassium:

• Peel the vegetable, cut into small pieces and place in a very large pot of water
• Rinse the vegetables.
• Fill the pot with water and let the vegetables soak for at least four hours at room temperature (or you can let them soak over night in the refrigerator)
• After soaking, rinse the vegetables with clean water.
• Cook vegetables as desired.
• Limit portion to one serving, usually 1/2 cup.

Happy and Safe Thanksgiving Cooking (and Eating!) to everyone!

Synthetic hormone may boost heart risks in kidney patients

The increasingly common practice of using a synthetic form of the hormone EPO to maintain normal red blood cell levels in chronic kidney disease patients may increase cardiovascular risks, according to a study published today in the New England Journal of Medicine.

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The study of 1,432 patients in the U.S. found that those who had undergone the treatment had a 34% increased risk of heart attack, congestive heart failure, stroke and death, according to the study.

Researchers said a safer course for patients would be to boost red blood cells to only slightly below normal.

An accompanying study of 603 patients in Europe found no increased risk, but neither did it find any benefit from using higher doses of EPO.

Low red blood cell levels, or anemia, is a common complication of chronic kidney disease, which affects about 10 million people in the U.S.

Damaged kidneys don't make enough erythropoietin, a hormone needed to produce red blood cells.

Red blood cells carry oxygen to muscles, including cardiac muscle. So people with severe anemia become easily tired and face higher heart attack risk.

Anemia is often diagnosed by measuring levels of the blood protein hemoglobin.

A normal hemoglobin level, depending on age and gender, is generally considered around 13 grams per deciliter of blood.

To counteract the anemia, patients are typically given regular injections of synthetic erythropoietin, or EPO.

The Food and Drug Administration has approved using EPO to maintain between 11 and 12 grams of hemoglobin per deciliter of blood in kidney disease patients.

But several small studies have shown that patients feel better and have more energy at higher hemoglobin levels, and that has led physicians to use higher doses of EPO.

One-fifth of the 500,000 kidney dialysis patients in the U.S. now receive EPO treatments to maintain their hemoglobin at 13 grams or higher, according to government statistics.

The latest studies, one conducted in the U.S. and the other in Europe, set out to determine whether higher hemoglobin levels were really healthier for patients.

The U.S. study, led by researchers at Harvard Medical School, found an increased risk of serious complications in patients with a hemoglobin level of 13.5 grams, compared to patients with a level of 11.3 grams. The study was paid for by Johnson & Johnson, which markets EPO in the U.S.

The European study found no difference in risk between patients with "normal" hemoglobin — defined in the study as 13 to 15 grams — and mildly anemic patients with hemoglobin of 11 to 12.5 grams.

The study was sponsored by Roche, which markets EPO in Europe.

Researchers were puzzled by the result. They said it was possible that EPO increased the viscosity of patients' blood, straining the cardiovascular system.

An editorial in the journal said the findings of both studies indicated that doctors should refrain from trying to boost red blood cell levels to normal.

The nonprofit National Kidney Foundation expanded its guidelines last spring to allow for more aggressive treatment of anemia.

The organization said it would review its treatment guides in light of the new research.

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Krissi's Notes: Also see, the FDA's Public Health Advisory posted late last night

Thanksgiving is next Thrusday (bet ya didn't know that, did ya?) so we, of course, have a different treatment schedule for this week. Normally I'm a Monday, Wednesday, Friday 7:30 am treatment patient, but this week I will go in on Sunday (Nov 19), Tuesday (Nov 21) and Friday (Nov 24). I can't recall ever having a treatment on a Sunday, before. I am glad that the staff will be able to have the holiday off to spend with their families. They certainly deserve a break from us crazy patients.

Which reminds me - I need to call the Flagstaff, AZ dialysis center (yes, there's only one in the whole city) and set up my Christmas vacation dialysis times. Ken and I always go to Flagstaff for Xmas because his parents live there... and whenever we travel, so does dialysis!

Happy Weekend, everyone and watch your fluids!

Awhile back, I posted this picture of my daily medications in my LiveJournal.com blog. The warning labels on the bottles made me laugh and included some real winning warnings such as...

"DO NOT USE IF PREGNANT OR SUSPECT YOU ARE PREGNANT OR ARE BREAST FEEDING" - How can you 'suspect' you are breast feeding... I mean wouldn't you notice if there was a baby stuck to your boob?!?!

and

"THIS MEDICATION MAY BE TAKEN WITH OR WITHOUT FOOD" - 'With or without'... would there be another way?

.. and, finally, the "Chinese Proverb" label:

"Don't Wait, Call A Day Ahead"

Ha! Those prescription labels can be pretty laughable, at least if you try to have a sense of humor.

What isn't laughable, however, are the sheer number of left-over, unused and wasted prescription drugs in people's medicine cabinets. Including mine (ok, so mine is more of a closet, which makes it even worse...)

This really bothers me. Its commonplace for most of us to have extra, unused prescriptions laying around, while millions of our fellow citizens can't afford prescription drugs. As you're flushing your half-used bottle of high blood pressure medicine (because you didn't like the side-effects, or your doctor changed the prescription, or you want the newer and better drug instead,) a dozen other people wish they had just one or two of those pills to get them through until they could afford to buy more at the pharmacy.

Adding to the problem is the overall healthcare crisis in our country. Sure some people have nice, cushy insurance that coveres everything. But guess what? Most of us dont; or maybe the insurance we do have is less than adequate and doesn't cover prescriptions. Then there are the saddest and neediest patients of all: the disabled and elderly persons who have to decide every month whether to spend money on their prescriptions or on food.

I'm sure I need not mention the billions of dollars pharmaceutical companies profit from all of this? Not only are they making huge profits from their name-brand drugs, but they are also monopolizing the costs of "generic drugs" which are supposed to be cheaper for the consumer. Greed seems to be the driving force: greed and the misguided thinking by naive voters, pharma company execs, and the general public who turn a blind eye and think "I will never be sick so this will never make any difference to me". Gah.

We are AMERICA, not a third-world country! We should be able to solve our so-called "health-care crisis", right? Apparently not. Prescription drug coverage is just the tip of the iceberg.

Every month when I get my refills I always look at the enormous volume of my own unused medications sitting in my closet and wish I could "share" them with others. My extra bottles and pills have taken over a whole shelf in my linen closet because there simply isn't anywhere else to put them. I have a lot of dialysis friends who can't afford their medications and who could benefit from my "sharing" with them - but of course, this is illegal. However, would it be ethical?

Legal doesn't always equal ethical, but in this case I think it should. There should be an easy way to share these extra prescriptions with those who need them.

No, I'm not talking about a street corner drug deal. Or an internet email spam campaign. I'm talking about being able to legally share medications through a government-sponsored program. Such a program would (hopefully) insure that the unused drugs that were "donated" would be checked for safety, redistributed properly and discarded appropriately as needed. Will that ever happen? Who knows.
Moshe Alamaro, an inventor and researcher at MIT, came up with a brilliant plan, but it doesn't look like his ideas will get very far. Too bad for the millions of people who could benefit from it. Medicare Part D made some changes this year that allowed some redistribution of unused medications in places like nursing homes, and with prescriptions that are "specially-packaged unused drugs". But, try reading the "fine print" and it sounds like Medicare puts more of a road block in the way of the willing consumer (or institution in most cases) to actually achieving such a feat. Even I would toss the drugs before filling out all the paperwork required!

In the meantime, if I want to get rid of my unused medications responsibly, I should:

1. Ask my pharmacist if he or she can take back medications.
2. Call my city or state to ask about disposal programs like those mentioned above.
3. If I need to put my medications in the trash, I should keep them in their original childproof and watertight containers. Leave the label on, but scratch out my name to protect privacy. Add some water to pills, and put some flour in liquids. Conceal the vials by putting them in empty margarine tubs or paper bags before throwing them out.

... or maybe I'll just keep stockpiling them in my closet - it seems to be the simple route.