riverafire: (Default)
I just posted this on Facebook so this isn't all news. I'm reposting here for those who might be interested or know someone who might be.
This month marks one year that I have been on dialysis. On September 19, 2012 I went to the emergency room suffering from headache, fatigue and chest pains. The ER nurse took my blood pressure and found that it was 211/182 (normal blood pressure averages around 110/70). I was at risk of having a stroke. A blood sample revealed that I was in kidney failure and that my kidneys were functioning at only 6%. I was admitted to the hospital immediately.
The next 2 weeks were a blur of drugs and procedures. The doctors could not figure out what had caused my kidneys to fail, but it became apparent that the function would not return. Their best guess is that my unchecked blood pressure was too much for my kidneys and caused irreparable damage. The only option available to me was dialysis and medication while I waited for transplant.
The symptoms of kidney failure are subtle and easily mistaken for other things, so it’s likely that I had been sick for some time without even realizing it. I mistook the fatigue as a product of my life as a single parent and full-time student. Likewise, hypertension is generally asymptomatic, so I didn’t realize how serious my health problems were. By then irreversible damage had been done to my kidneys.
I have done pretty well on dialysis. With the help of lots of pharmaceuticals my blood pressure is stabilized. I definitely feel better than I did when I walked into the ER a year ago. But I am still not 100%. Dialysis is still only equivalent to about 15% kidney function, which means I am really tired most of the time, I have to restrict my fluid intake because my body cannot eliminate the excess efficiently (and excess fluid means my bp goes up, I swell up, have difficulty breathing and feel like crap). I also have to periodically take supplements to aid in red blood cell production, since that is part of the work kidneys do as well. Dialysis is just a stopgap; working as life support until a better alternative comes through. I still have to monitor my health very closely, see a nephrologist on a monthly basis, restrict my fluid intake, check my blood pressure frequently, have frequent blood tests and do dialysis daily.
This is in great part the reason I recently moved from Los Angeles to Oregon. The cost of living is much greater in CA and in my current state of health I am not well enough to work full-time. Additionally, the wait for transplant in Southern California averages about 8 years, while in Oregon the wait is only about 2 years. Obviously that is a significant difference. The wait drops to no time at all if someone comes forward to donate a kidney to me.
Sadly, there is a great shortage of donor organs in the US right now. Many people will spend a lifetime on dialysis or die before a needed organ becomes available. This doesn’t have to be the case. I am writing this mostly to encourage you to be an organ donor. Doing so could save so many lives. Kidneys are not the only organs that are in short supply. By being an organ donor, you would fulfill such a great need and potentially improve the quality of life, and extend life for so many people. You don’t have to wait to donate a kidney either. You can live with only one kidney, and studies show that the quality of life is not diminished for people who donate kidneys, while the quality of life for recipients is greatly improved. Additionally, kidneys donated by living donors last longer and have a lower rate of rejection than those from cadaver organs (organs donated post mortem).
So yeah, I am asking anyone who is interested to give me an organ, but more generally, I hope all of you become organ donors. I have met some amazing people in online communities in the time that I have been dealing with this disease—people who have been sick for far longer than I have been and many who are far sicker than I am. They suffer simply because there are just not enough organs for those who need them. This does not need to be the case. You can be a part of improving the quality of life for scores of people by doing this one thing.
Finally, I would just like to address a few of the common concerns that could come up for people who are considering being a live donor. You might worry that you don’t have insurance, or that your insurance might not cover the cost. The recipient’s insurance covers all costs related to transplant, from initial screening, through surgery and the post-operative period. The screening process for donor and recipient are very rigorous and no one is allowed to donate if there is any risk that doing so would cause them potential harm. People with existing serious health conditions are immediately excluded from live donation. If you are interested in donating to me and find that we don’t share the same blood type (I’m B+, by the way) then a donor swap is possible, where your organ goes to someone who is a match but has a donor who is not a match while I get matched with another donor.
If you are interested in donating, I ask that you first do some serious research into what this entails before contacting me. Discuss it with your physician, family and even your employer (you’ll need to take some time off work). Talk to people who have been donors. If you have any further questions after reading this, please ask in comments or message me directly. It is not a decision that one should take lightly. At the same time, I don’t feel capable of dealing with the disappointment of someone offering to donate and then changing their mind. Please be sure. Then contact me and we can initiate the screening process. You can also get in touch with the Living Kidney Donor Network. They match people who are interested in donating kidneys to people in need of transplant. In the US you don’t have to be related to or acquainted with someone to donate so you could make a huge difference in the life of a complete stranger. It would be a really amazing thing to do. Please consider being a living donor or at least donating your organs after your demise.
Please feel free to share this with your networks if you think you know people who might be interested in becoming living kidney donors as well.
Thanks for taking the time to read this.
riverafire: (Default)
"Paul Revere" was the first rap song that I knew all the words to. I listened to "Licensed to Ill" so much that I wore the tape out. Every track on that album has a distinct memory for me-- roller skating at Skate City to "Brass Monkey" in middle school, and also dancing around my kitchen a decade later with my two toddlers. Listening to "Girls" on the bus to school in the mornings, and then that one day realizing that the lyrics were kind of wack (and loving that song anyway). Besides, I couldn't stay mad at the Beasties. Even when they spat the occasional wack line, they were so goofy that you couldn't keep from busting up long enough to stay mad at them. They were my favorites from way back.
& MCA was my favorite Beastie Boy. I fell in love with his voice on that first album. I still remember pressing my ear against my boom box, hungrily listening for the sound that was so distinctly him-- booming and raspy. He gave me feelings that I didn't have words for back then, but there was a roughness and depth to his voice that moved me more than any other mc.Once, when I was in high school I was talking on the phone with my boyfriend. Rather, he was talking and I was kind of bored and listening to the Beastie Boys. I absent-mindedly started rapping along with MCA on "Time to Get Ill" and my bf freaked out because he thought there was a dude on the phone. I don't think I ever did convince him that it was just me. I think I had listened so closely to that album for so long that it became such a deep part of me that sometimes it would just come bubbling up and I could channel MCA and convincingly say, "today I feel like chillin just as chill as I can," because after all that listening, he was kind of in me, you know?
the Beastie Boys were the soundtrack for a lot of people my age growing up. On Facebook, I am really amazed by the diversity of people who are posting about MCA's death. But the Beastie Boys really did bring a generation together. Even the hardcore hip-hop heads I know who will tell you white boys can't rap will give The Beastie Boys their due props. People I remember as metal heads in high school miss MCA too-- then again, they were a punk band first. & The Beastie Boys definitely had a gift for laying bare the common roots of hip hop and punk-- the frustration of youth, the intensity, the anger, all tinged with a trace of humor and self-deprecation. For me, MCA's rasp perfectly epitomized everything about the irrepressible immediacy of youth bubbling up demanding to be heard. He will be missed.
I'm going to go now and spend the day dancing to The Beastie Boys. Just like in high school, I will dance like crazy in my bedroom-- with no trace of self-consciousness-- as if MCA and I are the only 2 people in the world. After all this time, he is still my favorite. RIP.
riverafire: (Default)
changes at lj were giving me the heeby jeebies, so I'm jumping ship. Give me a few days to figure out how to work this thing and I'll formulate a proper post.

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September 2013

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