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Since the dialysis non drama is over, I figured I'd change this to an anything or whatever blog. Could still be dialysis related,... or not

my old blog, from 2005ish to 2008



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2 August 14

Is it abandonment?

I was reading a thread in one of my dialysis and transplant groups started by a man who was hurt that no one in his large extended family had ever stepped up to give him a kidney. He said that in the beginning a few said they would be tested, but whenever he mentioned it, they would change the subject. He was upset because it’s hard enough to find a donor, but to have people say they would be tested, then never say anything about it again is frustrating, especially if you’re on dialysis already.

I can relate. Though my parents and my brother can’t donate because they don’t match, I have 20+ cousins on both sides of my family. Some of them are ruled out because of their own health issues, but the rest, except one, has stayed quiet. That one said no. Though she was mean about it, I give her credit for at least answering the question. No one else has.

This fellow was wondering if he should just write off these family members, because they seemed to ignore his plight. I had no real answer for him. I don’t think I could just turn my back on my family, even if they didn’t or didn’t want to understand what it is that I’m doing, but I can understand the feeling of abandonment that he has. When the people who are supposed to love you the most leave you doing an invasive treatment that keeps you alive, without even trying to do anything to make it better for you, you wonder how much they value you.

I think, however, that it’s not that they don’t value you. It’s more that they don’t understand what you do, or what they need to do to help. It’s up to us as patients to educate those around us. It’s why I post articles about organ donation on my facebook page and twitter. I post images that explain who you cna donate to by blood type, or links to organ donor awareness organizations that can explain how donation works much better than I ever could.

For me, it doesn’t really matter anymore. I’ve been “on hold” on the transplant list since February of 2013, which basically means that I’m on the transplant list, but if a kidney should come up that matches me, I won’t get it. I can’t have a live donation unless I’m active on that list, and I don’t know when that will be again, if ever.

I believe that my family loves me, but they don’t really understand what it is I do, and they rarely see me on my “bad days” so they figure I must be doing okay. My guess is, that that is how it is with most families. Unless they spend a great amount of time with you, they don’t really know how hard dialysis really is, and think it’ll be okay for you to wait years for a kidney that matches to come up. it’s not abandonment, just unfamiliarity and fear.

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27 July 14

To Chrystal, my lost “Sister”

I can’t believe it’s been 12 years. 12 years without you. I think about you and I miss you every day. Your babies have grown into beautiful young adults. I think you’d be proud of them.

I wonder sometimes, if you were still here, would you have dove headfirst into the fandoms that I have? Harry Potter, Twilight, The Hunger Games. Would you have read every book, and gone to every Midnight Movie showing? Would you watch Frozen with me, over and over and over again? Could I have gotten you interested enough in politics to watch The Daily Show and The Colbert Report with me? Would you have come to New York with me to see the tapings? Wow, you and I wandering Manhattan; we’d be two lost sheep wandering into the wolf’s den. *L* I think you and Kelly would get on like a house on fire. Then I’d have two best friends that I love with all my heart.

Would you have hung out in dialysis with me? Or met me downtown afterwards for lunch? When I needed to lose weight to get back on the transplant list, would you have come to drag me all over town, just so that I wouldn’t be sat at home on my behind? Would you have come to see me in the hospital, when I was so sick that I almost died?

Would we play Animal Crossing together? That would be a hoot. We’d be shaking trees and catching bugs and fish, trading items and playing games on Tortimer Island. Would you help me prepare for the Jeopardy online test every year?

I sometimes wonder, if you were still here, would I have done any of the things that I’ve done? Would I have even started watching Colbert? Would I have gone to New York? Would I have met Kelly? Though, I’m pretty sure you had something to do with that. I think you knew that Kelly and I needed each other, and I thank you for that and for her.

I still love you, and I will love you forever. Though the ache has subsided, for the most part, I still have a wound that will never fully heal, because you are not here. I know that it wasn’t your choice to go, and that if you had your way, you’d still be here, driving me crazy, and making me laugh. I take solace in knowing that I’ll see you again someday, and that you’re watching over us; me, your mom and dad, your brother and sisters, and your kids.

Until we meet again,
Your loving “Sister”

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6 June 14
I’d just like to say Thank You to my best friend, Kelly Lincoln.  Thank you, Kelly, for making this last week the best week of the year.  I’m always happy spending time with you, whether we are hanging out in a park, watching the world go by; sitting on a train, going to visit a really cute doggie; or you’re just sitting with me in dialysis, while I’m sleepy and crampy (I’m still a little crampy, btw).  I missed you the second I got into the cab last night, because I knew that I wouldn’t be seeing you again for a while, and I don’t know how long that while will be.  I love you more than I could ever express in words, and I’m very very happy to have you as my friend.

I’d just like to say Thank You to my best friend, Kelly Lincoln. Thank you, Kelly, for making this last week the best week of the year. I’m always happy spending time with you, whether we are hanging out in a park, watching the world go by; sitting on a train, going to visit a really cute doggie; or you’re just sitting with me in dialysis, while I’m sleepy and crampy (I’m still a little crampy, btw). I missed you the second I got into the cab last night, because I knew that I wouldn’t be seeing you again for a while, and I don’t know how long that while will be. I love you more than I could ever express in words, and I’m very very happy to have you as my friend.

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10 April 14
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21 February 14

23 years ago today

On this day, 23 years ago, February 21st, 1991, I was diagnosed with kidney failure. I was 12 years old at the time.

The way I remember it is this. I hadn’t really been feeling well for a few months, and this particular day was no different. I had been diagnosed with so many different things, from throat infections to pneumonia. Nothing that was done made me feel better. This particular afternoon, I remember telling Mom that I was tired, and was going to take a nap. A few hours later, my brother, who was 6 at the time, came in from playing outside. He went upstairs, and being hte nosy little brother that he was, he checked to see what I was doing. He went downstairs and told Mom that I was making funny noises.

I remember her waking me, and asking me to get up, but I couldn’t move. My hands were clenched in tight fists, and I couldn’t open my mouth, even to speak. Between Mom and Dad, they got me downstairs to the kitchen, but that was as far as they could get. Mom had called the hospital and they told her to take me in, but since they couldn’t get me out to the car, they called an ambulance. Mom rode in the ambulance to the hospital with me, and Dad followed behind, after leaving Bro with a neighbor.

I don’t remember much at the hospital, except that they didn’t really know what to do with me. I remember two doctors talking about brain seizures and life expectancies. Mom said that she knew I could hear and understand them, because the more they talked, the wider my eyes got. When the pediatrician who was in the province at the time arrived, and sadly, I don’t remember her name, things changed.

Though I found out later that it is quite a rare occurrence, she had seen what was happening to me before. All she needed to confirm it was a simple blood test. I don’t know what the actual units of measurement are, but I had a creatnine level of over 1600, when a regular, healthy person has a level between 50 and 150. This indicated to her that my kidneys had failed. I still think that it was pure luck that she had trained with the pediatric nephrologist in Halifax that she was sending me to. I was given calcium and albumin, I think, because my severe lack of those was causing my immobility, and a medivac flight was arranged for me.

I was loaded on to a Hercules aircraft. It was my first time on an airplane. I remember the take off, but I fell asleep during the flight and didn’t wake up until after we’d landed. By then, I was able to move and speak again. I was admitted to the IWK Hospital for Children in Halifax. It was still a few hours before I met Dr. John Crocker, the grandfatherly nephrologist who would be my doctor until I turned 18, when he inserted my first peritoneal catheter for dialysis.

This was the beginning of my journey with kidney disease that continues today.

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Themed by Hunson. Originally by Josh