My life with dialysis and kidney disease
dialysis
Can Stem Cells Repair Kidneys?
May 1st
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?
More Media Mayhem – Scared to Donate?
Apr 29th
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.
Coldplay – Against All Odds
Apr 24th
Anyone who knows me well knows that music plays a large role in my ability to cope with life. Sometimes this means creating music at the piano, and sometimes this means listening to music which inspires me. This inspiration can come in a variety of shapes and wears many different emotions on its sleeve. Some pretty consistent favorites include:
The Police
Steely Dan
Rush
Rachmaninov
Radiohead
Bach
Now of course I’m fairly picky about how I choose to listen to these favorites. With the classical selections it becomes even more of an issue because of the number of different recordings you can have of one particular thing. A perfect of this is the ever popular Rachmaninov Piano Concerto No. 3. After the movie Shine, this piece of music became very popular, even getting a lot of “air time” on the peer to peer sharing networks. The recording floating around though, was the one from the movie – the one of Helfgott playing. Blech! What a horrible recording of such an amazing piece of music. I know classical music snobs prefer one interpretation over another – I’m not getting that snooty here. His playing just wasn’t up to “concert level” and really affected the recording. Throw in a piano that’s not prepared very well, and you’ve got a really lousy recording. That’s assuming the recording is done very well, including the actual recording, and the mastering done later.
So, I was saying I’m picky as to how I listen to music. I wish I could afford to be an audiophile, but I can’t so I’ve had to find cost effective ways of pleasing my picky ears. Right now I have three pairs of pretty decent headphones, and a headroom headphone amp from the headroom website. This is definitely the way to go if you’re looking to have the best Hi-Fi setup possible for under $300.
Now I’m not going to subject my headphone amp to the microbes and what not (kudos to anyone who gets that reference) that are inevitably floating around the dialysis center, so it stays home. I do bring with me my ipod, and my Sony MDR SD-10 noise canceling headphones though.
How I was able to survive without these for 20-some years I do not know, but they are now with me pretty much everywhere I go. They’re an ear-bud type headphone, meaning they go into the ear canal, and act as an earplug of sorts – sealing into the ear very well. They’re also noice canceling, which is awesome in a dialysis clinic. The way this works is pretty simple. A small microphone listens to what’s going on in the room (ambient noise). It then interjects this wave inversely into what you’re listening to, effectively canceling out the ambient noise. It works more effectively in certain frequency ranges, but basically drops the sounds going on around you pretty noticeably. Where you really notice it is in a jet. You put in the headphones, which cuts out a lot of sound anyway – then you turn them on, and you suddenly have complete silence. It’s like the engines fell off of the plane (I always have to look out the window to make sure they didn’t). This allows you to listen to music critically, even in relatively noisy situations (like a dialysis clinic for example).
So wait … I started this post to talk about Coldplay.
Making it through four hours of dialysis is sometimes difficult, but having good music seems to really really help. Finding music that I really like though, seems to be very difficult. I basically enjoy listening to anything – but when I listen to music with the express intent of having an emotional experience, the normal radio fare just won’t do.
For a long time the only “new” music I was really, and thoroughly enjoying, was Radiohead. Pretty much everything they’ve made has hit me somewhere inside in a way that helped me express something (at least to myself).
Enter: Coldplay – Parachutes
This album is really getting me. I’ve probably listened to it in its entirety 30 times now, and I am still enjoying it. There’s something about the musical composition that becomes a soundtrack for whatever I’m doing. It’s complex and interesting enough to be listened to over and over – and still after many listens is revealing new secrets.
It’s great when you listen to music that’s well made … you begin to find new things each time you listen. That is, if you have some means of listening to it the way it was meant to be heard. This might not be interesting to anyone but me, but I love listening to a song I’ve listened to 100+ times, and realizing one of the musicians is doing something I haven’t yet heard. I don’t know how many hundreds of times I heard Tom Sawyer by Rush before finally realizing that Neal Peart intermitantly releasing the high-hat creating a very subtle effect for those listening closely.
This was like an Easter Egg – a treat for me the listener.
Coldplay isn’t overly complex in terms of their technical ability. You know right off the bat you’re not listening to virtuosic talent like Neal Peart or Stewart Copeland, and you never have one of Geddy Lee’s incredible bass lines layered underneath some awesome guitar solo. And while there is some piano layered in, it’s not Evgeny Kissin playing Chopin’s Preludes, or Volodos playing the Rachmaninov No.3 – Nonetheless the music seems to be very interesting, and pleasing to my ear. I would even say that it’s climbing my favorites list.
Songs like High Speed and We Never Change renew my faith in the ability of modern musicians to create music that is not solely for the record labels, but might actually be something pleasing to their own ears. Each song seems to be its own journey, and the album as a whole seems to be very well put together.
I’m beginning to sound like a music critic I know, but this is one of those areas of my life that I take seriously.
…. don’t get me started on piano performance and recording
Unexpected Trip
Apr 7th
Due to a family emergency we will be traveling to Los Angeles this weekend.
Of course the last day or so has been filled with running around trying to get things in order to travel. With that came the ordeal of trying to organize some last minute dialysis.
I have to say that the good folks at Eaton Canyon Dialysis Clinic in Pasadena have come through once again. I called and spoke to their social worker (Lewie I believe?) and had a workable time on the day I needed within an hour or so.
Yesterday I had contacted the Hollywood DaVita unit, and they too were more than willing to help me out in my emergency (Thank you Shelly!). Ultimately I had to opt for the Pasadena clinic due to scheduling conflicts.
To make a long story short:
Thank you DaVita for working with me, and for making it simple (for the first time ever) for me to travel.
You really came through when I needed you to, so Thank You.
Thank also to the two social workers (Lewie and Shelly) who went out of their way today and yesterday to make things happen. For all the griping I do about social workers, you two really jumped through some hoops and made it happen – Thank You
Medicare Part D – The Reality
Apr 7th
I’ve been hearing for so long that Medicare Part D was going to be the best thing since TAB soda, but I haven’t seen anything yet to indicate that it would be.
I recently wrote a couple of entries about Medicare Part D and how selecting a plan was very simple (contrary to what the media would like us to think). And while I had selected a plan which appeared to be great (saving me about 50% annually), I hadn’t yet actually tried to purchase any medications.
Today of course, was that day.
I went into the pharmacy and asked: “Hey, are you guys part of the soandso network?”
“yes”
“Great, I need these scripts filled please.”
“cool bro, that’ll be just a minute.” (they don’t actually call me ‘bro’ … but it sounds cool).
“………..”
“Hmmm… it seems that your Phoslo isn’t covered.”
*screeeeeach*
At this point in my story, I’d like to explain something. Phoslo (Calcium Acetate) is something I take to keep me healthy longterm.
One of the amazing things your kidneys do is to help keep your calcium and phosphorous levels in balance. If one of these levels becomes too high, or too low, the other will rise or lower to help balance out. So without kidneys to pull phosphorous out of my blood, the level of phosphorous rises in my body, and my parathyroid kicks in (secreting the parathyroid hormone of course). This hormone once released essentially tries to pull calcium out of other places to balance the higher phosphorous. Yes, this means that bones and teeth for example can become weaker. Not to mention the higher amount of calcium floating around in the blood can calcify and lead to some nasty “stuff”. So I take Phoslo with each meal to bind to the phosphorous in my diet, thereby keeping this level in check.
Needless to say Phoslo is an important medication for me – it is also the most expensive one I take. I have been paying out of pocket for it (roughly $150 a month, which is significant for us right now), and now with Medicare Part D was lead to believe I would have coverage.
I was a little peeved to hear from the pharmacist that the one drug I needed covered was not. After all, that’s why I selected the plan in the first place!
Walking to the dialysis clinic without my Phoslo in hand, I tried to figure out how to proceed. Naturally I called these greedy (insert word here), and tried to find out why their formulary listed Phoslo as a “preferred” drug, but denied my claim when I tried to purchase some. I did this in a polite way of course. After 20+ minutes on hold, I was told that they did cover it, but that my pharmacist had requested too many. I then explained why it was necessary for me to have 400 tablets a month, considering that I take a hand full of them every time I eat.
Finally the coverage was approved by their pharmacy guy, and hopefully when I go back to my pharmacy guy, it will go through.
The whole thing freaked me out a little bit though. What’s to prevent one of these companies from listing a drug that 300,000+ American dialysis patients need in their formulary, only to drop its coverage weeks later after collecting our premiums?
Let’s hope they come through – a break would be nice. Very nice.
