Hope and the Fear of Loss

In the last couple of years I have had the pleasure of getting to know many wonderful people in the transplant and kidney community, both online and in real life. I have heard their stories of their valiant battles against critical illness and  they have also shared other stories with me about others facing similar challenge. More often than not these stories are full of hope. They may have moments of darkness or hurdles along the way but they describe their success in such a positive way that they almost don't do the battles' difficulty levels justice. Their courage is inspiring and of course it makes me appreciate everything in my life that much more.

I have realized however, that as much as I love being a part of this community there is an inevitable downside to it that I maybe hadn't considered before. Some of the people I have gotten to know and care about are going to get sick, have complications and  may face a life threatening medical crisis. I am going to be brutally honest and self-centred for a second. It scares me. It makes me feel sad that there is nothing I can do to help them. It makes me frustrated that there isn't more the medical community can do to help them (although I know they try very hard). It makes me worry. I'm not good with loss. Then again, I am not sure who is.

Sure, bad stuff and health problems can affect anyone at anytime. However people with transplants face the added challenge of having suppressed immune systems and in some cases underlying medical conditions that linger, waiting to cause problems. Also, the stress of their illnesses on one body part can often begin to impact other areas. I forget that sometimes because most everyone I have met who has gone through a transplant seems so vibrant and healthy. Like nothing can touch them.

In the last couple of weeks I've heard of two people I met at the Transplant Games being hospitalized for lung issues. "Nothing too serious" their family and friends said, despite the fact they'd be in the hospital at least a couple of weeks. For most people, a couple of weeks in hospital is a big deal. I don't know?

This week I found out that one lady who I've only met a few times but who has influenced me so much, is in hospital as well. She had a heart attack over the weekend and while she has been stable, doctors are struggling to do something, ANYTHING to fix her. A bypass won't work and will likely do more harm than good. Angioplasty seems like the only option but it too is risky and they aren't confident they can get through all the blockages. They are trying that today. She's been through so much already - it doesn't seem fair. She is such a kind, sweet, encouraging person who lights up a room. She believes in people and is the best cheerleader you could possibly want in your corner. Having had her in my corner a few times, I can certainly attest to this.

It's tough to watch people go through critical illness. I've been there with my Dad and to a lesser extent with one of my grand parents. I've watched other people close to me go through it with their loved ones (also very hard). There is a little part of me that worries that the more involved I get in raising awareness about organ donation, the more I might be more exposed to the loss (or the fear of loss) of people I care about than had I not become involved. It is probably selfish of me to think that way, but I worry about the effect it will have. I wish I could help.

I've never really been the praying kind of person - not as an adult anyway. I think what little of that I had in me was used up with my Dad. But in my own way, I'm sending all the positive thoughts I can to these people, crossing my fingers, hoping for the best and wishing all the wishes I can think of. It's all I can do.

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.