Here I am at another (thankfully) uneventful dialysis treatment.
My arm has healed quite well since the infiltration episode of last week.  Labs came back today though, and my phosphorous is a tad high.  I’ve worked so hard to bring it down, and somehow have let it creep up a bit (though not as high as before).

Well, time again to start taking handfulls of Phoslo with every meal.  Speaking of which, if you happen to work for Phoslo, why don’t you donate some to this worthy cause?  The stuff has a wholesale cost of over $50.00 per bottle.  Even with a really nice local pharmacist who understands I don’t have medical insurance, it’s ~$64 a bottle.  At two bottles a month that adds up.  That’s just one med…. I have several.

Not to complain though.  I am so blessed in so many ways.  I have a beautiful wife who against all logic and common sense loves me.  I have an extremely supportive and cheerful family (both sides of my family in fact).
Also, I have my health …  aside from kidney failure that is.

So what’s it like living such a different life from everyone else?

Well the first thing you need to learn, is that it isn’t so different.  Sure, to someone not dealing with a chronic illness it seems like it must be an enormous burden. 

It is…

What healthy people forget is that they have their own burdens.  I look at what people deal with on a daily basis and can’t believe it sometimes.  I look at what I deal with and it doesn’t seem like it’s so much.
I truly believe that not one of us is given any more than he/she can bear.

We all have our burdens, and other people’s burdens always look heavier. Or at least, they should.  A dangerous place to be is to notice how big your own burden is, and to begin to resent the rest of humanity for not having to help you carry it.  None of us has it very easy, and the sooner we focus on our own part, the sooner we can learn a lesson from it and move on.

Man I wish I could remember that on a daily basis.

So,
after several years of dealing with kidney illness, I’ve realized that there are virtually no places online for patients and family members to get much needed support.
Not the support available from large organizations and doctors, but the real world experience of others in similar situations.

So after much deliberation, I decided to open up a place for people to gather.  We’ll see if they actually do.
I’ve found online forums to be so beneficial in the past, that I thought a forum dedicated to the exchange of ideas and advice between patients might be a great idea.
How many people diagnosed with kidney disease have a safe place to go and ask questions to other patients who have been there?  Hopefully this can become such a place. 

Tollidee Kidney Support Forums

Please know, that this forum is open to any and everyone interested in this subject matter.  It is not for patients alone, but also for their families and friends.  It is also not only for dialysis patients, but patients pre and post transplant, and people just finding out they have kidney problems.

Please enjoy, and please give me feedback.  I’d love to know people are finding it, and what they think of it.

Most importantly, please help me spread the word if you know someone who can benefit from this community.

Any of you who are currently on dialysis probably know the horrors of the infiltration.
An infiltration is what happens when the needle going into your fistula, or graft, either nicks the side, or penetrates through in some way.  This can happen at the time of the stick, or during treatment if you have moved in a bad way.
Well Monday started out as most dialysis days do.  I walked in, weighed myself, setup my computer, and waited to be put on.
Arterial stick was glorious …  no pain, no scar tissue in the way… just a slick stick.
The venous stick on the other hand was a bit difficult.
After several minutes of digging for a "flash", I recommended to the tech that we move on to another needle, and a second stick.
Bad move… the second stick was equally painful, and something just wasn’t right about it.  I had that feeling as if a grape or something had just blown up inside my arm.  I said "I think you just infiltrated" to which the nurse replied "it’s flashing, we’re ok".
I knew something was wrong and tried not to move my arm the entire treatment knowing the side of the fistula had been nicked or something else.
Well, it finally went with just over an hour remaining.
The nurse was pushing a med, and suddenly I felt fire racing through my arm.  I looked down to see a golf ball sized lump forming under the skin. 
With some severe discomfort I muddered "it went… it went" and finally the machine was turned off (normally they do this automatically, but today was my lucky day).
Anyway, here we are a couple sore days later, and I have a VERY nice bruise beginning to surface.

Often times I’m given a hard time by techs and staff for not letting them stick me.  I always maintain that the patient is their own best advocate.  It is rare to find a tech or nurse who is really thinking about what they’re doing, and who realizes the impact their career has on other’s lives.  I seem to be in a clinic where there are several such people, and I feel blessed.  Still, there are bad days as I have just described.
But I still say…  it is YOUR arm, and YOUR fistula.  Protect it.  Don’t let people you don’t trust jab large needles into it!  It doesn’t feel good!

I’m sure you’re all used to google, and what it can be used for.  But did you know it is useful beyond just looking for dirty pictures and making travel arrangements?
As some have known for quite awhile, throwing a few extra characters into a query can vastly change the results yielded.

Assuming you’re all familiar with this, I won’t go into it, though you might want to do some reading.

Anyway, I just read an article today that describes a frighteningly simple way to google directory lists on web-sites.  I’m sure you’ve all stumbled into an area of a web site before which contains no index.html (or equal) page, and instead lists all of the files located in that directory, allowing you to view, or download them.  Well this article explains how to search these unprotected directories using Google.
*note*
It needs to be said right off that copyrighted information is so for a reason.  This isn’t to be used to steal, or infringe upon one’s protected material.  But it is a great way of finding content all over the web that people have let sit in directories.  It’s also a lesson to those of you who design, or maintain web sites.

The Article

Well well well…  it has been awhile.
Anna and I drove to San Diego last week for some much needed vacation, and had an amazing time.  As you may know, Anna’s sister moved to San Diego several weeks ago, and we wanted to visit her in her new "digs".
Of course we did the normal stuff… SeaWorld, Zoo (pictures coming soon).

Mostly though, the three of us just had a blast hanging out together and enjoying the sun. 
The drive out there was amazing, and if you haven’t driven through Utah, do.  It was absolutely beautiful, and driving through it was like some sort of interactive geology lesson.
Another highlight of the trip was Friday night.
We had gone to L.A. for the day to visit Anna’s Grandmother, and on our way back down stopped into meet, and visit with one of our friends from the forums.  This was a really cool experience as we got to know someone in person that we only know online.  We had a great time at their house, and experienced some amazing Thai food in Long Beach.

I hope to have some pictures up soon, so keep checking the pictures page for updates.

Dialysis was OK…  This seems to be the hurdle of every trip.  If you’re a dialysis patient yourself you know what a pain it can be to set up the travel arrangements.  But getting there and having a good experience is a completely separate challenge.  I’m convinced that when you travel the least experienced techs will be assigned to you, and I have experienced this in several states.
So far I have dialyzed in the following places:
Bahamas
Connecticut
Florida (Miami and Naples)
Anaheim
Nashville (two seperate times at different clinics)
San Diego

Each time has terrified me, as I have discovered how good I have it at home.  I’m amazed how little patients are concerned with their own treatments.  Perhaps it is just where I live that people take responsibility to manage their treatments.
It also seems unique to where I live to find RNs and techs who enjoy what they are doing, and are making a concerted effort to grow and become better at what they do (realizing this directly affects the health of the patient).
Traveling I always see staff who seem to have just happened into what they’re doing.  They don’t seem to think too much about what they do.
I made it through three treatments without any major problems though, and made some new friends in the process.

All in all, San Diego is an awesome place ….  to visit.
While I really enjoy the sun, and the water, and the beach, I don’t think I could ever live there, because of the population density.
There’s just too much going on there.  It never slows down.  There isn’t a "rush hour" like here.  The traffic is constant, and in all directions.
This would be fine if you had a home with a lot of land where you could go to get away from it all, but the yards are tiny, as are the houses.
I can’t wait to go experience it again, but for now I will keep my feet firmly planted in Colorado I think.