They Wear My Shirts!

It’s Tuesday, February 2nd. Today is my second round with the gentlemen over at I Wear Your Shirt (.com). Last year, Jason Sadler wore a “ineedakidney.wordpress.com” t-shirt while he was in Times Square. You can see the video here. This year, Jason has added a second chest upon which I can spread the word about my blog, Evan White. Evan is here in California and Jason is a Florida resident. As an upgrade this year, Jason and Evan appear live on the web while wearing my shirts.

Sorry guys, I stole your image.

(editors note: The shirts that these guys wear are usually pretty well-designed, high-production-value endeavors. Now, as a graphic designer, my own bar is pretty high. So when you see my shirts tomorrow remember a few things: I work full time, I go to dialysis three times a week, I have a fiery 8-year-old and a growing 6-month-old, I take on way more than I can chew and I found out about my “IWYS” opportunity pretty last minute. So, yeah, I made the shirts myself. I bought iron-on transfers that work in my ink jet printer. I don’t iron often. Those transfers aren’t as easy to use as the box says. They twist and warp, and they have this backing that you have to take off that is, ugh, really hard to remove. Okay, that’s enough apology for something you probably wouldn’t have cared about anyway.)

The really cool thing about them being online is that you (yep, you) can converse with the guys. I hope to be there myself, though I happy to be double-booked tomorrow – I have an appointment with my transplant team to discuss some new options for transplants that come from people who do not share my blood type. Here’s where you can go to check them out:

Jason Sadler, the creator of IWYS, will be on live from noon-1:00 pm PST and Evan will follow him at 1:00 until 2:00. Here’s where you can find them: http://iwearyourshirt.com/videos. I am hoping to chat with them while they’re on through UStream.com.

And, look, here’s the hard sell. I am thrilled that you came to my blog. If Jason and Evan convinced you to visit, then I am thankful to them and to you both. If this is your first time here, there are some posts here that I would really like you to visit. There’s this one … and this one. When I started this process, as you’ll note from the web address itself, I was in the business of looking for a kidney for myself. Don’t get me wrong, I still want that. But I’ve come realize that more than one kidney transplant is what I need – it’s what we all need.

There is a shortage of transplants in our nation, and it’s pointless. I’ve done the math; it would take kidney donations from less than 1% of our nation’s population to give a transplant to each and every person on the waiting lists. I am not just a guy waiting for a transplant – I’m a guy caught up in a shortage. I’m a guy caught up in a system that doesn’t have what I need. At least not yet. So I’m asking you to change the system. I’m asking you, whoever you are, whatever your circumstances, why not consider giving a kidney?

An unattractive, lazy disease.

Let’s face it, Cancer gets all the press. Cancer gets all the movies and all the marches and all the pink ribbons. Cancer gets all our pink ribbons, dammit. With good reason, naturally, cancer (for lack of a better term) sucks. What Cancer’s got on kidney disease is speed and movement. When someone gets sick with cancer, people act quickly. Patients on cancer treatments show the results – it looks hard, it gets reported as hard, hair falls out, marijuana gets smoked.  Marijuana gets smoked and nobody calls the fuzz.

So it’s frustrating being the underdog, at least in terms of disease notoriety. I haven’t seen a kidney transplant Walk-a-Thon shut down the streets in Los Angeles, but I’ve sat at lights watching thousands of women march against breast cancer. I’m glad they’re marching – I wish we were.

It’s not really surprising that kidney disease and dialysis don’t get much attention. People who’ve just met me don’t know I have a disease. I hide the catheter in my chest as best as possible. I bust my ass at work just as I always did, I certainly don’t want to let dialysis take my career, too. This blog, in fact, is two decades in the making – it’s taken me that long to go public with my ailments. There is safety in normal, or at the very least, the appearance of it.

When you start dialysis, the doctors all tell you how much better you’re going to feel. But they leave out the part about the end of the honeymoon. Two months into dialysis, the joys of feeling more alert give way to feeling tired all the time. Not just that run of the mill tired, but a goddam strong tired that consumes life. And, even if you’ve figured out how to limit fluid intake, there are those days when thirst is much stronger than measurement capability – and the dropping-blood pressure-payback for those extra gulps is a bitch.

All in all, though, our treatments are boring. Our symptoms are masked. People might call the fuzz if you smoke marijuana. If my blood pressure drops after treatment, I sleep it off. When my catheter gets blocked by blood clots, it’s hardly water-cooler discussion worthy. Over the years, I suspect people forget about those on dialysis. It’s easy to forget about us; we drop out of circulation for social events, we don’t make it to the family gatherings far away, we are just plain unavailable three nights of the week – permanently.

And, worst of all, we stop writing our blog posts. We try to keep up with work and with growing children and doing the dishes. We keep going to dialysis and forfeit 20+ hours of our life – something has to be left behind. For me, it’s been writing blog posts. I lost track of writing for the one thing I want the most – a kidney. Because I don’t have a kidney … irony.

Look, every disease and ailment deserves whatever attention it can get. Cancer is deadly, much deadlier than post streptococcal glomerulonephritis. It deserves the attention it gets. But those of us on dialysis deserve a lot more attention than we get. We deserve more than a passing scene in a movie, or a casual line thrown about in an emergency-room drama, “the patient is on dialysis, but he’ll be fine…”As diabetes takes over more people’s lives more people will end up on dialysis, we’re eventually going to get the attention we deserve. Like the stop sign that went up after the neighbor’s kid got hit, it’s going to involve some casualties. Publicity for a disease starts slow, only gaining momentum with the people it kills.

A blog is a good start, but I would like to see a parade. I’d like to see people giving kidneys to strangers because they were moved by a commercial, or by the gripping movie they just saw. What I’d really like, though, is the opposite  -  that which comes on the other side of the attention – I’d like to see kidney transplants become so common that they end up in a small, regular column on the 8th page of the D-section of the Sunday newspaper. And I’d like to see that before we need the front page. I’d be happy to forget all about the extreme need for kidney transplants … and go out and help my friends with cancer.

Take the Quiz.

It’s one thing to have organ donation represented in the media – that’s always encouraging. It is another thing altogether to have Maggie Gyllenhaal represent organ donation in the media. It makes organ donation so much sexier. Or maybe organ donation is just as relatively unsexy as it’s always been, and it’s Ms. Gyllenhaal that is causing me to say this. Either way, check out PBS doing it right.

Pat Spurgeon is the drummer for a pretty incredible band from San Francisco called Rogue Wave. I learned last year that he needed a transplant. It’s kind of a round-about story. I collect rock posters by another San Francisco artist, Jason Munn. I was shopping his website last year and came across a benefit poster for Spurgeon. I bought it. After the purchase, I wrote a little note to Jason Munn asking him to pass along my best wishes to Spurgeon. While all of my contact has been electronic correspondence, there’s something of a 6-Degrees Kevin Bacon thing. I feel connected to an artist who shares my issues, even though I’ve never met him.

PBS has picked up on Spurgeon’s story and now there’s a documentary about his experience. The website also includes great facts about organ donation – including a quiz that tests your real knowledge of donation. Check out the documentary, take the quiz and, definitely, check out Ms. Gyllenhaal’s PSA.

Weights & Measures

Today I’m including a simple chart I’ve been working on. I suppose that other dialysis patients could use this chart, but I think it’s probably more significant that non-dialysis patients get the idea.

When kidneys fail, more often than not, the production of urine stops completely. My failing kidneys were producing plenty of urine as of a couple of weeks ago, but the introduction of dialysis treatments finally shut that down (the irony of dialysis taking away the last of my kidney function is often noted). Making urine is kind of a giggle moment if you just bring it up casually, but for every dialysis patient who doesn’t make urine you’ll find a patient who cannot drink fluids. For every person who cannot drink fluids, you’ll find a daily struggle against a very natural urge: drink when thirsty.

A dialysis patient who takes on too much fluid between treatments suffers for it. Removing a great amount of fluid from the blood stream over the very short course of dialysis is tough. As the body adjusts to the quick change in pressure and contents, the patient experiences rapid drops in blood pressure, headaches, leg cramping and certainly general mailaise.  The end of treatment offers no solice – from my experience the only reasonable thing to do after a tough treatment of fluid removal is to go home and sleep off the pain.

I consider a reasonable fluid gain between treatments to be between 2.0 and 3.0 liters. Fluid gains above 3.0 liters starts to introduce the suffering. Okay, so you’re thinking 2 liters in 48 hours ain’t so bad. It’s tough. On the one hand, it’s a lot less fluid than you think. You can try it at home: buy two 1-liter bottles of water and drink nothing but those two bottles over a 48-hour period. No cheating (and good luck).

The other problem with fluid gain is tracking how much fluid is being consumed. An example of the challenge with this is at a restaurant. The waitress comes by and politely fills your iced-tea when you’re not looking. Where was the fluid before she re-filled? How big is this restaurant glass? Now that it’s at the table, how do you resist drinking it – especially since, well … you’re thirsty.

This chart is my attempt to address my fluid gains. If I don’t know how much fluid is in each container I regularly use, I can’t track my gains. For now, I’ve purchased three Nalgene canteens - two 1-liter bottles and one half-liter bottle. I’m filling each one with a favorite drink [for now: water (1 liter), limeade (1 liter), and coffee (half liter)]. And that’s what I can drink between treatments. Nothing else. Today, treatment is still 6 hours away and I’m down to my last .25 liter (less than one soda can’s worth) for the rest of the day. I guess I have to pace myself better.

Click here to download the PDF: Fluid Intake

A cheat sheet I'm using to measure fluid.

Awesome getting Awesomer.

Just when I thought this couldn’t possibly be any more fun.

On Friday, I had outpatient surgery at UCLA for the insertion of a “permacath.” This catheter, sometimes called a Hickman Catheter, is a set of tubes the docs install to make dialysis possible. It’s my blood faucet.

Surgery was relatively uneventful. The aftermath was a little messy. I basically threw up (probably from the anesthetic) all the way from Westwood to my home. Prisoner-tracking Bloodhounds could have easily tracked my progress up 5 miles of Wilshire Boulevard.

So now I’m ready for dialysis. Physically. Tomorrow’s appointment with my new nephrologist will determine start date – possibly this week.

I’ll post a video of “Dialysis: The Miniseries, Part 3″ next time. For now, I’m calculating the myriad ways of cleaning one’s body without showering – the permacath has to stay dry, permadry.

And for a closing thought, I just read an account of a gentleman with a permacath and a dog. The dog chewed through the plastic tubes. Take a look at the graphic above and consider that for a moment. He survived.

Testify! A Former Donor Speaks.

I have the good fortune of a very diligent support network. One member of this group has been asking around to find experiences of former donors. I’d like to share exerpts of one of  the responses:

FROM A DONOR WHO GAVE A KIDNEY THREE YEARS AGO:  I hadn’t had an operation before (well, except for having my wisdom teeth out in high school) and I really didn’t know what to expect.  My mother had scarlet fever as a child and that may have led to her slow renal deterioration over the years. By the time of our operation, she was really weak and jaundiced. She’s doing great now, and needless to say, I have secured the title of “favorite child” in my family!

 Advancements in medicine have been incredible and in the ten years … the procedure has become less invasive. I have three laparoscopic scars on my stomach, the top one being about ¼” wide and the lowest one being about double the size. I also have a 2-3” straight scar on my bikini line, which is hidden in my flab. All in all, the scarring isn’t very obvious…whenever I go swimming, people never seem to notice them.

About the procedure…I was in the hospital for three days. I remember waking up in my room and feeling really groggy. I basically slept for three days with an IV in my arm and pain killers that I could take my pressing a button next to my bed. … I wasn’t in excruciating pain, but I did feel sore from the wounds, which were bandaged up and hurt whenever I moved. It was a bit painful to get up from a sitting position because the wounds are in a soft area that moves when you move. I was at my mom’s house three days later and spent the next three weeks watching TV and talking short walks around her neighborhood. I had to wait three weeks before I was allowed to take the long-haul flight back to Hong Kong.  

My doctor told me that my life wouldn’t change very much after the operation. My diet is the same and my lifestyle hasn’t changed. I’m not supposed to participate in any activities that might threaten my remaining kidney, like martial arts, but other than that, no “sacrifices”. I have a pharmacist at Brighams whom I can always email with questions about medication that might be harmful to my kidneys. Oh, I shouldn’t take aspirin and whenever I come across a medication that I’m sure about, I ask him first. People can be born with one kidney, so it’s not like you’ll be a freak of nature.   

The great thing about donating a kidney was seeing my mother instantly improve. The recipient looks fantastic almost immediately. I remember noticing how the whites of her eyes became whiter 24 hours after the operation, when I visited her room. In fact, she was cleaning her oven the day she returned home (which I found annoying, actually). ”

Do you know a donor who can share the experience with readers? It’s really quite helpful to hear other people’s takes on medical proceedures. You can post comments on my section: Share an Experience.

Lots of News

6.6 – if you read my previous post, you’ll know that my creatinine has risen yet again. I’ve alerted my employers: I’m going back to dialysis. My family is, please pardon the reference, waiting to exhale … we’re all just waiting for the other shoe to drop (pardon again). 

In my past two introductions to dialysis I was so sick that dialysis started as a side-effect to a hospital trip. This time is different. I’m feeling pretty healthy. Tired, but healthy. I go to work everyday, meet deadlines and all that. I go home and take care of a sleep-deprived wife and a couple of girls on very different developmental planes. I even still go to the pool on the weekends and play in the water with Wallace, my eight-year-old. So it’s a weird thing to be waiting for dialysis to begin.

Because there’s no inpatient situation this time, I am basically in charge of getting my treatments started. What’s amazing is how hard it is to actually do this. My primary transplant doctor is on vacation. The surgeon who will insert a catheter into my artery to provide an access for dialysis – on vacation. My personal counselor for my insurance company – phone number is not working. I commented on a New York Times blog today that having to look for my own transplant seems indicative of the state of the healthcare world. The idea that I would have to chase pe0ple down to make sure I can get on dialysis seems to cement my theory: only you can make you healthy, nobody is going to do it for you.

The other paradox this week is one I’ve noted before. There is so much news lately about transplants and kidney disease that I must wonder: Is there suddenly more attention being given to our cause? -OR- Has there always been this much attention and I’m only noticing it now because of my increased efforts? I don’t suppose the answer really matters – it’s great that kidney disease news is on the rise. The squeaky wheel gets the grease.

With that, here are some of the stories that have come across my browser, or have been sent in by friends…

A doctor gives advice on staying healthy, for the sake of your kidneys  http://consults.blogs.nytimes.com/2009/09/14/expert-advice-on-kidney-disease/#comment-13675

Medicare creates more expense by trying to save money on anti-rejection drugs: http://www.nytimes.com/2009/09/14/health/policy/14kidney.html?_r=2&hpw

Related article (and for those of you who have seen my business cards, you’ll note that we’re using the same kidney image): http://www.nytimes.com/2009/09/15/health/15brod.html?_r=1

5.4

Given my choice, this post would be about Violet, my new daughter, future president (or whatever else she chooses to be, really, especially a doctor – but whatever she likes). It would also be about Wallace, my 8 year old step daughter, future entertainment mogul or rock star or actress, who has been mood-swinging around the new baby for the past three or four weeks. She called the neighbor girl a bitch. Wallace might be a little pissed about Violet. But she also loves her – it’s one-sided sibling rivalry unfolding in front of me.

I would also write about my wife, Rebecca, who has a Violet attached to her breast and a Wallace attached to her pant leg. I would write about amazing Rebecca, the Pediatric RN; how lucky I am to have a wife who has a ton of experience with children (not the least of which is Wallace). I’m not sure where I’d be without her – well, except I do know: I’d be on the phone constantly asking a doctor or my Cigna Healthcare nurse practitioner, “are you sure this is normal? all this crying?” I would also write about my parents who are constantly asking about Violet and having us over for breakfast in their central air-conditioned home. Or I’d go on some diatribe about how lucky I am to have a job that gave me two weeks off for paternity leave, but that it still totally sucks to go back to work and leave my family at home.

But there’s really no time to be writing about such things on this particular blog. There’s not enough blog space anyway, to write about all of those marvelous things. I can’t write about that because I should really be writing about how my creatinine is finally, officially, tragically 5.4. Well, maybe not tragic – that’s too dramatic.

You see it doesn’t really matter what comes in and out of the life of a kidney ailment sufferer – us ESRDs. Whatever successes and excitements and children come into life, they cannot prevent kidneys from failing. My upbeat attitude doesn’t work. My dogged pursuit of a kidney donor doesn’t slow it down. Nothing stops my kidney from failing. Not even taking my medication, on time, twice every single day, for 4 years and almost 4 months could stop it.

5.4 is well-done, if kidney failure were a steak. 5.4 is point-four above the “end” in End Stage Renal Disease. The fact that I’m still not on dialysis is probably just a formality. One day I feel fine, the next day I’m throwing up last night’s dinner over a headache that could kick your butt after it was done with me. I walk into the kitchen sometimes and forget why I’ve walked in there – I have gotten used to this by now, I just walk calmly out again. There is waste product circulating through my brain, it is just harder to remember stuff. My legs are jumpy again – my nemesis of kidney failure. [side note: if you ever made fun of the ads for the medication for restless leg syndrome (which you should, because it does seem funny), now you know someone who has it.] I remember that cycling at the gym used to help with my jumpy legs, so I thought I would buy a set of rollers to ride on in my house. I keep forgetting to order the rollers.

Anyway. I’ve been remiss (again) at keeping this blog up to date. You’d think it would be top priority. It is top priority. But 5.4 is a pretty high number and kidney failure is a big item on the “to do” list. There’s a lot to do. Like take some Tylenol and sleep it off. I forgive myself.

Jason (and Jason) in NYC!

Here’s my little ‘ol blog on the back of Jason in New York. His work, and my twitters and Facebooks about the day have helped me gain some attention. The message is becoming viral now, people are coming out of the shadows to spread the word. I love this job!

Welcome Shirt Viewers!

With the help of my friend Kirsten, the “I Need a Kidney” message is traveling, via t-shirt, from Jacksonville, Florida to New York City today. This is pretty exciting. Visit the I Wear Your Shirt site, and you learn about another Jason. Jason Stadler is a pretty darn smart web design company owner and marketing pioneer. His premise is as simple as mine … he simply wears your shirts. Today, Jason is wearing a shirt with this modest blog across the chest. He’ll also be posting video and blog posts. Check out the daily update page here.

From someone who, up until recently, believed that my battle was mine to fight alone – it’s a strange and humbling experience to imagine my message traveling on its own. My little life out there, making a name for itself. Our message … the one of all of us who are searching for a kidney, living on dialysis or just dealing with kidney disease are all too familiar with. This misunderstood and under-publicized, but growing disease (a predicament?) feels like its finally getting its moment in the spotlight.

I woke up wondering where the shirt was and … were people looking at it? Are they writing the address down? How many people see a shirt as it passes through a couple of airports – and then Times Square? I suppose these are all answerable questions, people track this kind of information for a living. I chose English as a major (Creative Writing, no less) so I can’t say how advertising follows numbers like this. I must admit though, it’s much more fun to just daydream about it, to just simply wonder all day long.

So, if you’ve seen the shirt today and decided to visit, thank you. I would love to hear where you saw it, what drove you to visit – leave a comment. My message is pretty simple – it’s on the shirt.  I need a kidney. Here’s a link to another part of this blog where you can actually take action. I’d love it if you’d consider donating a kidney to me, but just spreading the word is more than I’d ever asked before. For whatever action you take (and the action you took today to visit), I am forever grateful.

I Wear Your Shirt links: Flickr, UStream, Youtube, Facebook