My life with dialysis and kidney disease
Archive for March, 2006
Why I’m Awesome as a Patient
Mar 22nd
Basically I’m awesome as a patient. There are a number of reasons why, but I will focus here on three.
- I don’t complain
Most dialysis clinics have at least two patients who are so upset about being on dialysis in the first place, that they make their personal mission to ensure that everyone else has a miserable time as well.
That’s just not my gig.
God put me here for a reason, and I’m pretty sure it isn’t to make sure everyone around me hates their life.
Yes, dialysis is probably #1, or close to #1 on a list of “things I hate about my life” for most patients.
I hate it.
So what?
That isn’t license to make everyone around me glum. Bad attitudes ripple outward from their origin like large rocks thrown into peaceful ponds.
Right now I’m watching a patient complain about having to have labs drawn.
Suck it up dude … we do this every month – get used to it. Your blood is going to be drawn and put into little tubes, and the doctors are going to use that data to tell you how well you are or are not doing on dialysis.
Great, now the tech you’re complaining to is going to go complain to the other techs, and before you know it all the techs are brooding and thinking about other jobs – while putting on the other patients (like me) who aren’t in a bad mood.
- I put myself on
That’s right, I put myself on.
I clean my own arm, I pluck off the scabs myself, and I put the needles in (ever so gently) myself.
I am doing my part to make the dialysis provider (in this case DaVita) more profitable as a company, by helping them lower their cost of doing business.
This is the best case scenario for a patient – after all, I’m the one who cares the most here about my health, and well being as a dialysis patient.
I think I should be invited to participate in DaVita’s profit sharing program!
- I censor what I write here
With my thousands of readers, and vast influence across the intraweb, I could easily bring down the dialysis industry with my insider tell-all version of what really goes on here. OSHA, the FBI, CIA, NASA, and even the IRS would LOVE to know what goes on here, but can’t get past the strict entrance requirements. I’ve been approached time and time again to write about what things are really like inside the clinic, but instead I choose to write with careful concern for the profits and reputation of a large, nameless dialysis provider ( DaVita), and so choose to paint everything in a positive light.
Ok ok, I can’t keep it up any longer. The truth is, I am not an awesome patient. I am a run of the mill patient, and the truth is that all but a few of the people around me are exceptional. Exceptional souls with exceptional character, and an amount of forbearance and resignation I have not seen anywhere else in life.
These people trot in here day after day, week after week, month after month, and year after year. They keep smiles on their faces, and while doing so sit for four hours thinking about how little of their life they control – how mortal they really are. They get out of here, and head home hungover from a grueling treatment to take care of loved ones, responsibilities, and all of the normal stuff. Two days later they walk back in with a brain so full of toxins they can barely think straight – only to have it all sucked out of their blood causing a horrible headache, a blood pressure crash, severe cramps, itchy skin, and a host of other “problems” that they have learned to adapt to, and have learned to consider “normal”.
Dialysis patients are by and large exceptional people. They are not considered heroes, as their struggle is not to anyone’s benefit but their own. Their struggle is simply to stay alive for another day – week – month – whatever.
This is not to depress anyone, rather it is to let some of you know how special you are in my eyes, and to let others of you know how amazing some of these people are (in my eyes anyway).
I am not one of these people – kidney failure is really all I deal with here. I go through with a smile, but I don’t have other daily health concerns. Most of my compatriots here are dealing with stuff more severe, and grievous, yet they keep smiles on their faces, and keep pushing ahead through each new day. Not just pushing along to survive another day, but pushing along with desires, goals, dreams – with all the fervor of their healthy counterparts.
I salute you, each and every one of you – in your awesomeness.
You are certainly … awesomer … than I am.
Traveling on Dialysis – Treatment in LA
Mar 12th
Two down, one to go on my traveling dialysis trifecta.
We drove directly from Vegas to the clinic Wednesday morning, and as such weren’t exactly sure when we would arrive. Well, we arrived about an hour early, and even after a bite to eat were at the clinic way too early. While I filled out paper work (which never once has taken 30 minutes as they say it will) we asked if they were keen to me sticking myself. They verified that yes I was allowed to do so, and they were already prepared for it (good). We then asked if it was OK that I brought my own materials. Again, they indicated that this was OK before we even got the question all the way out. What happened between last week and this week? Did the dialysis fairy stop by and educate everyone as to what buttonhole technique is? If you remember, I had problems last week while trying to make dialysis arrangements when they didn’t understand what “buttonhole” is, or even what “cannulation” is. Well, suddenly they seemed to be on the right page, and even let me stick myself with my buttonhole needles.
To their credit, the folks at the Eaton Canyon Dialysis Center (I would link to their website … but they’re not that cool yet) were really friendly and accommodating. It’s easy for us (patients) to get grumpy and upset when things don’t go our way. Face it, we’re already pretty much in a bad mood that we even have to deal with dialysis, much less that we have to deal with it while traveling. Throw in the fact that we have to do it in a completely unfamiliar place, without the staff that we’ve spent years training – you get the picture.
We try to be nice, and patient, but it’s hard to do. It’s too easy to fall into the trap of treating the new staff like idiots for not knowing how we like treatment to go. Well the people here were great. Even though I was the one uncomfortable with my surroundings, they made every effort to make sure I was comfortable, including fresh sheets on the chair and clinic-provided blankets (I hope you Boulder DaVita staffers are reading this).
My buttonhole sticks weren’t so hot the first day. Part of it was just having to get used to a new routine, and new staff. Everything was just a little “off”, and that translated into me not having a good stick. While struggling to get the arterial needle in, the tech helping me offered to grab the needle and shove it in. I tried to explain that it was dull, and that you couldn’t just slide it in like you could a sharp. She didn’t get that though, and even after several attempts at explaining what buttonhole was, it was clear that they still thought I had a sharp needle in my arm. Finally one of the techs explained to the other that I was a home care patient, and that my machine was broken. He at least knew that many home dialysis patients use the buttonhole technique. They then all wanted to know why my machine was broken, and what I was doing in their clinic. I tried to explain that I was traveling, and did “in-center” hemo in Colorado – but I’m not sure that sank in.
Anyway, I finally got both of the needles in and treatment went great.
The second treatment (Friday) went even better. There was a crowd waiting to watch me stick myself, including my sis-in-law “Al”. I was a bit nervous with so many onlookers, but felt as though I had the responsibility to do it right. I am after all advocating for the patient’s ability to take care of themselves with regards to cannulation, so I thought it would be über-lame if I were unable to get the needle in.
Now, before I go any further, I need to relate something Al came up with during treatment. She kept remarking about the loud alarms on the machines, and kept asking why one alarm in particular never got “answered”. I explained the perils of treatment with alarms, and said that sometimes you sit there for a few minutes with the alarm blasting in your ear. Her idea was priceless – a small device is attached to each tech which emits a mild electrical charge. Each tech is then assigned a grouping of machines, their “zone” if you will.
Each alarming machine causes an electrical shock out of the device, and each subsequent alarm that goes unanswered within a given time causes the amplitude of the electrical shock to increase. It would be great – techs sprinting across the room to shut off alarms.
Now if we can just dream up something that shocks you when you forget to change gloves between patients.
Anyway -
One more treatment tomorrow – then back to CO for the normal routine.
It’s interesting during times like this to think about how obtrusive dialysis is into our daily routines. We sometimes become so used to making our lives work around dialysis, that we forget what a major pain in the butt it is.
This last week has made me painfully aware of this, but it has also made me aware of how fortunate we are to live in a time and place where this treatment is available to us. I urge those of you stuck in the “dialysis sucks” phase (pun entirely intended) to snap out of it. I understand completely how not fun it is – really I do. It is ultimately your choice though whether or not you react positively, or negatively to those around you.
Peace
LA is Weird
Mar 12th
So what’s the big deal with LA anyway? We get here expecting to see Tom Hanks on every street corner, and instead see a bunch of people trying SO HARD to be something they’re not. It started to get ridiculous after awhile.
After trying in vein to see stars in two separate locations (what… are they hiding under rocks?!) we decided to go get some food at a place called Canter’s. Mind you, I was traveling around with a couple of people local to the area, and was told that we absolutely had to eat at this place.
So we walk in, and are quickly ushered to a table. I think I saw 37 Sidekicks on the way to our table, and multiple instances of people wearing both thongs (you may call them flip-flops), and beanies. We finally sit down and take a look at our giant menus. Meanwhile a woman named “Fran” comes by to take our order. It must have been obvious that we were not from the area because everything we said translated directly into laughter on Fran’s part. And not the kind of laughter that communicates “gee… you outta towners are cute!” Rather it was the type of laughter that is forced, and amplified to say “you sir, are foolish.”
For example, my mother in-law was trying to order some soup, and couldn’t get a straight answer as to whether the vegetable soup listed in the menu was a cup, or a bowl. Fran looked incredulous as we asked this inane question. After several attempts yielding no result, Masha (my mother in-law) finally said “surprise me.”
Fran burst into laughter and walked away continuing to laugh and shake her head while muttering something under her breath.
Of course I don’t respond well to such things. Everyone with me seemed to think it was funny, and shook it off. I of course couldn’t get over the fact that not only were we about to pay for such service, we were most likely going to tip – and in doing so give an extra “vote” for the appropriateness of said behavior.
After all of that though, I do have to say that the pickles we were served with our meal (you get them by the plate full here) were awesome. And if you know me, you know I love a good pickle. This was the one redeeming quality of Canter’s – not the unaesthetic repetitive aspen tree image on the ceiling, not the ugly nagahyde booths, and not the grouchy wait staff. No, it was the pickles.
Should I find myself walking down Fairfax again in the future, I might stop in to eat there – I just hope I don’t end up with Fran.
That Time of Year Again
Mar 12th
This week we attended a couple of evening services while visiting here in LA, and it really hit me why we do what we do during this time of year.
As we head into Great Lent I feel more aware of what I’m thinking and doing, and more importantly, “why”.
For Orthodox Christians this time of year is one of fasting, prayer, and repentance – leading to the greatest feast of the year, Holy Pascha (Easter). Throughout the next several weeks many of us will be “giving up” things that we typically enjoy including meat, dairy, eggs, sweets, TV, movies, and anything else that might become a stumbling block.
There’s a lot of confusion as to why people abstain during Lent, so I’ll try to explain why it is we do this.
One major reason we volunteer to abstain from things during lent is to practice saying “no” to ourselves. The thinking is that if succeed in saying “no” to ourselves when we want a cheeseburger, we will have an easier time saying “no” when we are tempted to lie, or act hurtful towards someone.
Another major reason for fasting is to save. We save time by not preparing such lavish meals, and we save money by not purchasing expensive foods. This time, and this money both can be given to others, and aid us in more frequent alms giving.
During Lent Orthodox Christians are called to eat less, repent more, and give more to all of those in need. Fasting gives us ample opportunity and means to give more to those around us.
Go ahead an purchase the cheeseburger, but rather than eat it, give it to the guy on the corner whom you’ve gotten in the habit of avoiding every morning. Instead of spending $4 on a venti soy vanilla latte, give the $4 to the gentleman in the parking lot asking if he can wash your windshield for you.
As you can see, the idea of fasting during Great Lent is not to punish ourselves by giving up things we enjoy – rather the idea is to practice self control by saying “no” to ourselves, and in doing so we are able to give more freely to those around us in need. With enough practice, perhaps we can stop focusing so much on ourselves and what we think we need, and can focus more on those around us. When I say “those around us” I am not only referring to the poor and needy on the street corner. I am also referring to those around us in our lives every day in need of something. We all have family members, friends, and loved ones who are in some sort of need. This can be emotional, physical, financial – whatever. The point is that there are lots of “others” out there in need – not just the obvious ones.
I wish you all a wonderful journey through Lent, whatever that means for you personally, and hope you learn something new about yourself.
Favorite podcasts
Mar 6th
So your new ipod has arrived, it’s all charged up – and you’re wondering: “what the heck am I going to do with this thing?”
You’re going to load it up with all your music, photos, movies. Then you’re going to wish you had a reason to use the thing every day.
Enter the podcast.
Contrary to the name, a podcast really has nothing to do with iPods. A podcast is simply an mp3 that is distributed/syndicated much like an ATOM or RSS feed.
Anyone with a computer can listen to these podcasts, and anyone with a microphone can make them.
I have however found a few useful ones lately.
A Spoonful of Russian
After marrying into a Russian family, I have been trying to learn some Russian for months now. But “I have a headache” and “the slower you go, the faster you get there” are statements that can only take me so far. I recently found a podcast entitled A Spoonful of Russian. It’s a great way for beginners (like me) to pick up some new words, and more importantly, to hear how to correctly say them. This is so important when learning a language. If you aren’t able to immerse yourself in a language, it’s imperative that you have a willing tutor like Natalia to guide you through the correct pronunciation of each word. Her website even has flash cards for studying and remembering the Cyrillic characters. Yes, the Russian language has its own alphabet, they don’t just take our letters and print them backwards.
Anyway, that’s helpful and useful podcast number one.
What’s Up in Astronomy
Somewhere out there is a young boy named Ryan who knows a lot more about stars than I do. His podcast (with an oh-so-clever-title) is a great guide to the night sky. Living in Colorado my whole life I’ve developed an appreciation of “dark sky”, and love to drive into the mountains to see some truly awe inspiring star-scapes. Ryan’s guide is a great way to keep up with what’s going on in astronomy. His podcasts are extremely informative, and easy to understand. Maybe I should ask him what’s a good telescope to get (some of you know I’ve been “looking” at telescopes for years now).
Dr. Laura Moment (download mp3′s directly or subscribe via iTunes)
Dr. Laura … What can I say here? Here is a controversial character who seems to genuinely care about her audience. I sometimes listen to her show on my way home from dialysis, and I have to say I am more often than not impressed with her advice. The catch though, is that you have to give her at least 3 or 4 weeks of your time. What I mean is, you can’t just listen to one show and decide whether or not you like her. You have to get used to her style of communication first, and second, you have to get tired of as many deadbeat callers as possible, so that you begin to understand why she cuts people off, or seems to tell them what they’re thinking/feeling.
She doesn’t always wait for someone to finish a sentence or thought – which is annoying. But I’ve found that more often than not, she has sniffed out a clue from some other statement the person has made, and is actually on the right track to identifying their real problem/reason for calling.
Anyway, these moments are just little snippets taken from the “call of the day” so to speak. If you’re not a Dr. Laura fan, or worse yet, if you’re opposed to all things not extremely left of center, it’s probably best not to even click the link.
VOD Cars
If you’re like me, and you enjoy cars – especially high performance ones – then you’ll probably love this. A couple of “guys” from New Jersey (hey’s you’s guy’s) give us one of the most entertaining video podcasts I’ve seen. The video clips these guys get are great. Everything from rented Lambos blazing down the turnpike to young Scandinavian children driving on their father’s lap at ridiculous speeds. I can’t vouch for content on this one, as I haven’t seen to many episodes – but from what I’ve seen so far this is a great video podcast for anyone with a penchant for fast cars (and no money to actually be out driving in one).
