As some of you may have read in another post, I have asked one of our readers to write up her “story” to share with others.

Julie is one of the patients coming out of John’s Hopkins who has received a transplant from a donor of an incompatible blood type.

She is also doing very well.

Read her story here.

Interesting article floating around the renal community.

Blood Type No Longer Matters?

According to this article a “new procedure” helps to remove harmful antibodies pre and post transplant in the recipient. I remember reading something about this being accomplished via plasmapheresis several months ago, but I’m not sure if this is the same thing or not. Unfortunately, the article doesn’t really say.

“There may still be some people whose antibody levels are so high that we can’t overcome them,” he said.

“But for the majority of people who have a donor of the wrong blood group, this will open up a new opportunity.”

The blood filtering treatment was used in the weeks before and after the transplant.

Very interesting, I can’t wait to see how this develops in coming months.
Go Aussies!

From HealthDay News compliments of Dale’s dialysis_support list:

FRIDAY, April 28 (HealthDay News) – U.S. scientists say they’ve used bone marrow-derived stem cells to reverse genetic kidney disease in mice.

Reporting in this week’s Proceedings of the National Academy of Sciences, the team said the stem cells were able to regenerate damaged renal cells in a mouse model of Alport syndrome, the second most common genetic cause of kidney failure in humans.

Symptoms of Alport syndrome usually appear in childhood, and the disease typically results in end-stage renal failure by the time a patient reaches the teens, 20s or 30s.

The study offers the first example of how stem cells may prove useful in repairing defects and restoring organ function and also provides a potential new strategy for treating Alport syndrome.

“This is one of 31 human diseases that occur because of genetic defects in the body’s extracellular matrix and basement membrane proteins,” study senior author Raghu Kalluri, chief of the division of matrix biology at Beth Israel Deaconess Medical Center and associate professor of medicine at Harvard Medical School, explained in a prepared statement.

The extracellular matrix (ECM) is present throughout the body and is made of collagens, proteogylcans, noncollagenous glycoproteins and, in some tissues, elastin fibers. The ECM helps maintain the structural integrity of many tissues by constructing a “scaffold” for cells.

“In normal kidneys, a specialized form of extracellular matrix known as the glomerular basement membrane (GBM), composed primarily of type IV collagen, is the key component of the blood filtration apparatus,” Kalluri said.

Genetic mutations in people with Alport syndrome cause structural damage to the GBM, which results in a breakdown of the kidneys’ filtration system. There is no cure for Alport syndrome. Kidney transplantation or lifelong dialysis are the only treatment options.

About four weeks after the bone marrow-derived stem cells had been transplanted into the mice, about 10 percent of the cells had incorporated into damaged areas of the kidneys and emerged as healthy renal cells. This resulted in improvements in kidney function and repair to GBM damage.

More information

The U.S. National Library of Medicine has more about Alport syndrome.

Wow! This is some exciting news for sure. So perhaps in 17 years after enough R&D this will be usable - but of course by then nano-machines will be building fresh kidneys for everyone from their own genetic material anyway.

OK, I’m not for sure on the second part of that - or the first part for that matter.
This is one of those pieces of news that keeps some of us going. The thought that everything we think we know about medicine is about to change. I know that many patients (myself included) think: “Just endure until you get a transplant, and then by the time you need dialysis again in 20 or 30 (or 2) years everything will be totally different!”
While I know that these things take quite awhile to come to market, I do firmly believe that medicine as we know it will be very different in the not-to-distant future.

Anyone have any other really cool stem-cell research to toss my way?

From Reuters Health:

NEW YORK (Reuters Health) - A lot of misconceptions about organ donation are
being fed by the entertainment industry, warns Susan Morgan, a Purdue
University health communications expert who is tracking how organ donation is
portrayed on TV and trying to dispel myths about organ donation in the workplace.

Emotionally charged television shows have featured fictitious stories about a
black market for organs, doctors who murder their patients for their organs,
or who declare death prematurely to take their organs, Morgan told Reuters
Health.
“Until we can persuade writers and producers to stop deliberately using
false, medically and logistically impossible plot lines involving organ donation,
the public will continue to believe in so many myths about donation — and
too many people will refuse to donate” as a result, Morgan said.
Surveys Morgan and others have conducted confirm that people very often
believe that what happens on their favorite TV show is real, especially medical
and crime dramas.
Compounding the problem, Morgan said, there is “a huge amount of distrust” of
both the medical system and the organ allocation system. For example, many
people are thoroughly convinced that rich, famous or well-connected people are
much more likely to get organ transplants than ordinary people, she said.
“We’ve learned that we have to counter the most prevalent myths in order to
get people to consider donating their organs after they die,” Morgan said.
She’s working with the New Jersey Workplace Partnership for Life, which provides
tailored health campaigns in workplace settings, to dispel myths about organ
donation in some 45 New Jersey companies and organizations. The project is
supported by a $1.67 million grant from the US
“Our primary goal is not simply to persuade people to become organ donors;
it’s to make sure they have all of the accurate information they need to make a
decision based on the facts,” Morgan said.
There are over 90,000 people waiting for transplants right now and the number
grows every day. Fewer than 40 percent of Americans have signed organ donor
cards and only about half of their families consent to the donation of a
loved one’s organs.
“If everyone who was eligible to donate did donate, we could nearly wipe out
the entire transplant waiting list,” Morgan said.

If you’re afraid to donate your ogans after you die because of some computer animated slow-mo sequence from CSI:Vegas - you’re dumb.
Period.
Keep your kidney

Forget the “you’re dead” part. Let’s look at all donors, including living ones.
Are people honestly no longer able to separate Law & Order storylines from reality? Is someone out there really choosing not to donate a kidney to a person in need because they’re afraid that they will fall asleep in a hospital, and wake up in some seedy Vegas hotel in a tub of ice?
I don’t get it.
I believe it - I just don’t get it.

The media certainly has some fault in this. It is true that transplantation gets way more negative press than positive. We as a society don’t pay as much attention to news when it is positive, and like any smart business they have learned to give the customer what they want.
Face it, the media sells stories and emotion, not fact.
We see this when celebrities receive transplants. The story almost always goes something like “… narrowly avoiding a slow and certain death due to kidney failure, SoandSo received an emergency kidney transplant yesterday with only minutes to spare.”

Forget relying on the meda to get the message out that people need organs, and that the process is very doable. Forget relying on the media to make heroes out of people who do choose to donate life to others.
Forget all of this.
The media is not the answer.
The answer is in legislation. A movement to abolish motorcycle helmet laws.
more ‘donorcycles’ = a faster moving UNOS list
I cheer for every shorts-and-flipflops clad motorcycle rider not wearing a helmet. I cheer that they make it home safely - but should they not, I pray that many people in need will receive organs and tissue.

Ok, I said I would come back to this, because I ran short on time last treatment.
There’s nothing worse than getting to the good part of the story, only to have your dialysis machine start beeping with the display “UF GOAL REACHED”.

I’m sure you can all empathize

So where was I?
If I remember correctly I was talking about a nuclear stress test on my heart that didn’t go too well (the one two years ago, not the recent one).
As I said in the last installment, after the echocardiogram, everything turned out ok.
Flashing back, I’d like to talk just a bit about the procedure itself. Typically with such a test there are sort of two sets of images taken, and then the results are compared. They want to see blood flow to the heart at rest, and then after stress. Comparing the two results gives a good idea of how blood is flowing through the heart.

First, an IV is placed into the arm, and the nuclear isotopes are placed gently into the body via a giant syringe.. You’re then ushered to a nice table to lay on, which slides into something looking like a giant doughnut. The tech positions the imaging portions of the machine properly, having you rest your arms behind (above) your head. They then ask you not to move for 22 minutes, and begin collecting images.
After a break for some food, you’re usually brought back in for the stress portion of the test. I believe for most people this involves some activity on a treadmill. Unfortunately due to my medications, I always seem to get option b, which consists of jump-starting the heart pharmaceutically. I’m on an ACE Inhibitor called Atenolol, which slows my heart rate. This makes it difficult (even with running on a treadmill) to get my heart rate up where they’d like to see it. To get it where they wanted it took a couple of different drugs - the first one didn’t seem to do the trick. Eventually I was given atropine to “juice” me up a bit.
While the whole ordeal was painless (IV’s are now considered “painless” after almost 4 years of dialysis), it was extremely odd to be laying on a table, and to suddenly have my heart rate accelerate like a Ferrari. I could feel my heart bouncing around in my rib cage for several minutes, and sort of just wanted the whole thing to be done. Eventually it was, and as I said earlier, the results weren’t favorable. After some quick research and an echocardiogram however, I was let loose.

So fast forward to the present (sorry for all of this jumping around - I’m a piano rebuilder, not a writer).
I get the call for the nuclear stress test, and am told I have to have it by a certain date to remain “active” on the list. Unfortunately at the time there’s a nationwide shortage of this isotope, and people aren’t able to get the test done. Finally after several phone calls the test was scheduled and my lovely wife accompanied me to my date with the nuclear medicine techs.
Again, due to my use of Atenolol, I was informed that I wouldn’t be walking on the treadmill. Instead of jump starting my heart though, they had a new process of inducing stress-like conditions in the heart. I was given a vasodilator, which is a drug designed to cause your veins and arteries to dilate. Of course there are multiple people monitoring you the entire time, as well as a half dozen leads glued to your skin around the heart. So there’s no need to fear the weird feelings that kind of ‘ooze’ over your body as your entire vascular structure expands. A flushed face is normal, as is some stomach cramping (very mild), and general discomfort from sitting half naked in a hospital around strangers. This portion of the test lasts 6 minutes or so - and amazingly the side effects of the drug halt immediately when the dosage is stopped.

Then it’s back over to the imaging machine for another ~22 minutes of imaging. Laying there the second time (that day), I was much more relaxed, and almost fell asleep. Then it was out with the IV, and off to work.

I was very nervous afterwards, as I had been watching the monitor during the test, and thought that what I was seeing on the “stress” portion of the test was different from the “rest” portion. Thank God I don’t know a thing about what I was looking at - another several days of my life thrown away due to anxiety. The results came back, and everything is great. Not only is my heart working, but appears to be able to do so for some time.
I am also currently active on the list again, pushing on into the next year of waiting.

**don’t hesitate to send O blood types this way for donation**