Snapshot-Life on Dialysis

I think a lot of people unfamiliar with dialysis or kidney disease assume that while inconvenient perhaps, dialysis is a treatment that solves the problem of kidney disease.I know I thought it could be done indefinitely, with little to no risk to the patient. I assumed it was a fairly decent substitution for a person's kidneys that no longer worked.

I recently participate in my second Kidney March. On the journey, I met a lot of dialysis patients and their families. I also met several nurses who work with dialysis patients everyday. Some of those nurses wore a picture on their backs of a patient. He was supposed to be marching along side them but unfortunately, he passed away three weeks before the march, of complications from dialysis and kidney disease. He was 39. Hearing his story, and those of the patients on the march who dialysized in camp every night over the three days of the march, reminded me that dialysis is not as simple a solution as it sounds and it isn't a solution that anyone would be thrilled to accept, save for the fact that it keeps them alive.

Months ago, I asked several patients via the Internet across North America, what life on dialysis is like. Here are some of their responses (in their own words):

• The thing I hate most about dialysis, is prolly the whole looking for a kidney donor process. I mean, I feel uncomfortable borrowing 100 dollars from a friend, let alone asking them or anyone else for that matter to donate a kidney to me. It's just a very helpless and a lot of times hopeless feeling I think a lot of people o. Dialysis have. Also being stuck in the dialysis chair, when the alarm keeps going off, even tho u aren't moving, and the tech keeps accusing u of moving
• Sticking whacking great big frickin' needles in my arm. Interrupted sleep as the alarm goes off at irregular intervals. Dx hangover day*. Whacking great big needles. Not being able to spontaneously get away for a break with my wife. Being tied to a machine process and sticking whacking great big frickin' needles in my arm. 
• As far as dialysis was concerned I hated it all. 
• The time commitment. Whether in center or at home, it's an unwelcome intrusion on my lifestyle.
• The one thing i hate about dialysis is not being normal like the others that party, have fun in the world live a normal life with companions, partners, friends and such, the one thing I love is that you die faster because no matter what you'll never be like them (the ones mentioned before) and wheres the fun in that? Yeah you are spiritually advanced more than the normal ones but whats the point? :(
• The worst thing about dialysis is how others unfamiliar with it look at and treat me....*and* how staff treat me as a child or as an adult who is incompetent, ignorant and almost as if I do not have the capacity to read, research, understand, comprehend, speak or do for myself or anything regarding my life. Being treated as a lower class of person!
• Boring, dialysis washout. Can't travel out of Country, people look at you as the "reality of mortality."
• I hate everything about it.......my 5th year anniversary tomorrow, it's like a prison sentence but worse. 
• I know it's "I hate Dialysis" but truthfully it's the PKD. that I hate! I took very good care of my body but ended up on dialysis anyway. 
• I just don't like it, I don't like how I feel. I don't like the complications I have from it, and just plain not feeling good. And also being looked at as "poor Melanie", being asked if I'm ok a hundred times when I'm having fun.... Its been a combined 20 years almost for me including transplant, I have other medical issues now too, but they all stem from CKD/ESRD. Its just a hard life. I look on the positive side and I'm so glad to have a way to survive and I'm not taking a single second I have for granted. But this life is not easy in any sense of the word. You are constantly reminded how fragile life is and how easy it is to just lose this fight. But to carry on and complain would be useless for me. 
• Can't even begin to express what i feel about been on dialysis aargh ###### hell 
• Starving yourself from foods you can't eat and not being able to hardly drink anything liquid. All the medications to take dealing with the aide effects of dialysis. And waiting for a live saving kidney to come along. 
• Definitely the severe cramping all the time 
• Only things I hated about dialysis were not being able to eat cheese, nuts, chocolate and drink diet coke. 
• Being tied to a machine 10 hours a night and always having to count hours if someone wants you to do something at night like if I get on at 9:00 I won't be done till 7:00 plus 2 hours to carry 
• Tape. it tears my skin off! plus everything else in the symptom list. I hate being tired consantly. never really feeling GOOD. its like dragging weights around all day. nausea. getting a nice meal and it wont go down or stay down. people cutting me a break cause I'm  sick. nurses who say "I understand how you feel" Aggh! 
• The time spent sitting in a chair. Feeling left out, when friends and others are doing fun activities and I have dialysis

Transplantation may not be a cure for kidney disease but for most patients it is a far more managable treatment, with fewer side effects and issues and a much better quality of life. The problem is, there just aren't enough kidneys being donated, either through deceased donation or living donors. There also isn't enough being done to prevent kidney disease in the first place. People shouldn't be dying at 39 of kidney problems, just as they shouldn't be dying of cancer or heart disease. It is frustrating that we don't hear more about kidney disease but hopefully that will start changing soon. In the mean time, educate yourself about kidney disease, register to be an organ donor and even consider becoming a living kidney donor.

*For many patients, the day after dialysis can sometimes bring hangover like symptoms, causing cramps, nausea, headaches and extreme fatigue.

Kidney March-Take Two

Tomorrow morning, while many of you are still sleeping, or at the very least are in your cars, on your way to work, shaking your fist at the September traffic, I will be boarding a bus to Millarville. It is there that the 2012 Kidney March will kick off, starting hundreds of marchers on a 100KM journey over three days through the foothills of southern Alberta.

Tonight at the sign in/orientation meeting the executive director of the Southern Alberta & Saskatchewan.Branch of  The Kidney Foundation of Canada  told us a story. It was about a marcher from year one of the march, two years ago. This marcher named Didja, a dialysis patient who was actually dialysizing every night of the march at camp, was determined to make it every step. She was often at the rear of the pack but she didn't care. She was going to do it.

At one point during the last day, Didja climbed one of the larger hills, exhausted. When she reached the top she looked back and realized that for once, she wasn't the last marcher. There was another lady who had fallen behind her and was struggling up the hill. Didja proceeded to turn around, go back down the hill she had just climbed. She grabbed the arm of the lady who was struggling and helped her up the rest of the way. Together they made it to the top and kept on marching.

This story meant a lot to me for a few reasons. One, I am slow like a turtle so if you are looking  for me on the march route, I'll be somewhere near the back. Slow and steady wins the race - not that this is a race. But the thing that really resonated with me was what Didja did. Because over the last year, and certainly over the last few weeks, there have been so many people like Didja that have gone back and helped me up the hill (so to speak).

When I started to wonder if I was out of place in promoting organ donation, so many people stepped up to tell me I needed to continue. They shared personal stories that helped me remember the value in talking about my donation experience. They cheered me on and encouraged me to keep on keeping on. Sometimes when the self doubts get loud, you need other people around you to step up and be louder. And that happened for me which is great. I will always have cynics and naysayers in my universe, but a whole lot of people made them easier to ignore.

In recent weeks I was also starting to panic about raising the minimum amount ($2200) needed for the Kidney March. If you don't raise it by October, you pay the difference. Some of the donors I had last year weren't donating this year which meant I needed to find new donors. I'm pretty shy and don't have the largest networking base so this was extremely daunting to me. I made flyers and handed them out in my neighbourhood. Nothing. I talked about the march on Facebook and Twitter. Nothing at first. but then slowly but surely, donations started coming in. And within hours of my orientation meeting tonight, I hit, then exceeded that minimum donation. Huge.Weight Lifted.

I don't even know where to start in thanking my donors. They are all so wonderful to me for so many reasons. Over my next few posts about the march I'll probably get into the "why" but in the meantime, here are a few fun, random facts about my fantastic Kidney March backers.

• My "furthest away" donor is from Louisiana. Despite a hurricane looming, she still took the time to not only donate, but promote the march to her friends and family
• Four of my donors have had transplants. One liver, two double lungs and a kidney. People who would not be alive today if it wasn't for both living and deceased donors.
• I had 36 donors. Seven of them have names starting with J.
• Three of my donors I have never met in person
• Six people I have only met once in person
• I had donors from Edmonton, Calgary, BC, Ontario (many parts), Texas and Louisiana

Thank you to everyone who has supported me along the way. Tomorrow (and the next three days), I will walk for you. 

Another Choice

I've been a little slow in posting here for a few reasons. The first is that this summer has been very busy! I was involved with the CanadianTransplant Games (more to come on that in possible future posts). I also took a trip to Ontario to see the family and some friends. For many of them, it was their first time seeing me since my donation in June of 2011. While they all knew I was fine, I think it helps some people to physically see you to believe it. (Yes, a few did want to see the scars!).

The other reason I’ve stayed away from the blog I guess is what you could call a crisis of faith (of sorts) about what role promoting organ donation should have in my life. I’ve done a fair bit of thinking about it but still haven’t come to a place where I am totally comfortable.

This is the situation. There are a few people in my universe who would like me to stop talking about organ donation (and for that matter, marching for kidneys, encouraging blood donation etc). They don’t understand why I care so deeply about it, or why I want to spend my time talking about it, sharing success stories and educating people about its many facets. Sure I’ve explained it but the message isn’t being received. Now some people would say to just ignore them, who cares what they think and so forth. But it is hard when they are close to you and you value their opinion on things in general. It’s not that they don’t support organ donation – they’d donate on death if that was an option - they just don’t think I should be actively promoting it. And they are vocal about it, frequently telling me to stop and on occasion mocking it by calling me things like “organ girl” or implying  that’s the only thing I ever talk about.

I‘ve tried to get to the root of “why” they feel this way. There are several  different reasons I was given although two common ones seemed to stand out. The first is that they think it is weird to talk about things associated with body parts/death/illness. The second is reason is being as I/my family/friends have never needed an organ, I’m creeping on a cause that I have no business being involved in.

It’s tough. I’m not sure what to do to be honest. Yes, when you talk about organ donation, you do talk about body parts/death/illness. But you also get to meet and learn from some pretty interesting, inspiring people. That’s what I like about it. I’ve learned so much about science and the medical world – which is very cool to me. I love reading medical journals and websites and then taking that info and being able to make it relevant to the everyday conversation. On the flipside, I’ve also had a chance to learn so much about the human spirit and the strength people can find in themselves to carry on. That intrigues me as well and really puts life in perspective.

Yes, no one in my family has ever needed an organ – it’s true. Does that make me some kind of fraud, speaking about things I shouldn’t have an interest in? Some would argue my being a kidney donor makes me part of the transplant community. I think for others though, the fact I donated to a complete stranger should have been enough (and was weird enough all on its own). My involvement in the transplant world should have ended when I left the hospital. All the stuff that has come after it (the blogging, social media promotion, media stories, volunteering) is overdoing it, taking things too far. Is it?

Here is what I do know. In September of 2010, I suddenly had a strong feeling of something big being around the corner for me, something that would deeply impact my life and “make everything make sense” if you will. As flakey (and not me) as that sounds, the “kidney thing” was the start of that. The idea came to me (to look into living donation) and it totally made sense. I started writing about it, which again, totally made sense to me. I felt like I had found a purpose, something I could do to help other people. And it has continued. The funny part is, I’ve never been that person who really wanted to help other people. Not that I was a Scroogey Grinch;  I’d just never really volunteered for anything, I hadn’t really been involved with any kind of fundraising and I didn’t really have any “causes” I actively cared about. Donating a kidney changed everything for me. Two of my best  friends have both independently said that I seem to have found my calling. I’d never use those words but there is some truth to that. I love being involved in the transplant  and kidney communities, talking about it and sharing stories with people to raise awareness. Learning about the medical processes intrigues me. I get excited whenever I sit down to write a blog post or attend an event. Despite being shy in new social settings, I have loved meeting people involved in the transplant world and hearing their stories, asking them things I’ve wondered about transplant patients. I’ve met patient and donor families as well as some pretty amazing medical staff and I’ve learned a lot from all of them.

One of the people I met during the Canadian Transplant Games had an interesting comment about my involvement that has stuck with me. She said that in my situation, I probably have some advantages over people in the transplant community when it comes to raising awareness. She said that because I am not sick myself, didn’t receive an organ, nor am I worried about saving  a sick family member, people outside the transplant community might listen to me first.  She said “They might perceive you to be more unbiased - someone they can better relate to. Just like the kidney donation, you don’t have a specific person or reason you are doing it for. You aren’t getting anything out of it.”

Other than of course, the fact that I like to help and I have a passion for it. Despite that though, I've found myself lately quite hesitant to share organ donation news articles via Twitter or Facebook or even talk much in person about people or things I experienced at the transplant games. I know I’ve definitely had a case of writer’s block too despite having a lot of topics and stories to write about. I don’t want to stop what I’ve been doing the last year and a half (because I love it and think its important) but at the same time I don’t want to alienate people who are close to me either (because I love them and think they are important). I am hoping to find some kind of middle ground but so far, it hasn't happened.