I'm in a decision-making mode right now and I've learned, after leaping to many decidedly dramatic changes, to let the mulling take its course and go through the gray place first. Without procrastinating, of course.
When I visited my hepatologist at University of Colorado Hospital Transplant Center in Denver in June, she recommended the live donor option for me. And that I should have it done there since they have so much experience and a world-renowned transplant surgeon, Dr. Igal Kam. I was caught off-guard by the recommendation, but I have decided this much: I want to go for it. It means a lot of positive change for me.
I heard this story recently on the news and it inspired me. A Catholic nun needed a kidney transplant but she was still working as a teacher and doing okay. She became sicker, though, and was facing several hours a week of dialysis, which would force her to quit teaching. She fought back. She went to her email address list and to everyone on it she sent an email in quest of a live donor. She received about 20 offers and at least one was a match. She received her new kidney and returned to teaching. She said she was overwhelmed with the response to her plea and overjoyed to discover so many exceedingly generous people.
I felt buoyed, happy about this woman's pluck and tenacity and courage. I have the first two, but right now I'm blowing real hard on the itty-bitty flames of courage. It seems so much to ask anyone to do...for me.
Oh, my insurance covers all the live donor's costs, even travel and lodging before and after the surgery. So it's not that. The Transplant Coordinator and her team of nurses, technicians, and doctors do all the evaluation, and I trust them completely. A live donor can back out at any moment – even on the way to the OR. I want it that way. Freedom.
I have more mulling and writing to do. And I'll feed my courage more of whatever it needs. (More ice cream, maybe?) I'll make a move soon. And stay out of the direct sun so it doesn't dull my senses. It is so blooming hot here!
Sunday, July 31, 2011
Wednesday, July 27, 2011
Chronic Illness
Chronic illnesses abound these days. Some people get them when they're very young, even born with them. Some people acquire them over time. And by the time we've passed middle-age and are headed toward "older," more and more human beings have a chronic illness or two or three. I acquired one at age 24 – seizures, which fortunately are controlled almost completely by medication and lifestyle changes. Asthma arrived at around age 40, and I eventually went to a homeopath in Denver who helped clear it up with some major diet changes, and I don't have to take daily medication. But 6 years ago, at age 58, when my life was really starting to shape up and make complete sense to me – with satisfying work, challenges to my intellect and creativity, and all those rewards, I acquired an autoimmune disorder of my bile ducts (they carry the toxic waste that the liver creates from filtering bad things out of your body). It's called Primary Sclerosing Cholangitis or PSC. The bile ducts get hardened on the outside and inflamed on the inside and basically start shutting down. Now the toxic waste gets trapped in your liver and starts scarring the liver tissue first and then destroying it, also known as cirrhosis. I have cirrhosis now and I've been on the liver transplant list for 3 years now.
PSC is rare. It took 8 months from the first onset of symptoms to diagnose. When I tell someone I have liver disease, the first thing I clear up, whether they bring it up or not, is that the cause was not excessive drinking of alcohol. That's the knee-jerk reaction when someone hears "liver disease." As the disease has progressed, I've had many hospitalizations from infections of the bile ducts (cholangitis) and also one from internal bleeding. That was when I got listed. On a daily basis, I experience a lot of fatigue and cannot work regularly. That sucks. There is a national scoring system based on 3 blood tests that determines when you are eligible for a transplant. But there aren't enough livers to go around, so you have to be pretty sick before you are considered for surgery.
There are a lot of blogs out there about chronic illness and I can recommend some of them to you. One that comes to mind first is called Chronic Babe. Type it into Google and you'll find it. It doesn't matter what severity your chronic illness is – the dailiness of it can be very draining on your body, your mental health, your spirit. I do a lot everyday to deal with that, and I'll be sharing more about that as I continue to post.
And I won't forget to write about Florida and its politics! As for Florida weather, there's a hurricane forming in the Gulf now that the meteorologists are predicting will head for Texas. Ha! Floridians know hurricanes do what they damn well please.
PSC is rare. It took 8 months from the first onset of symptoms to diagnose. When I tell someone I have liver disease, the first thing I clear up, whether they bring it up or not, is that the cause was not excessive drinking of alcohol. That's the knee-jerk reaction when someone hears "liver disease." As the disease has progressed, I've had many hospitalizations from infections of the bile ducts (cholangitis) and also one from internal bleeding. That was when I got listed. On a daily basis, I experience a lot of fatigue and cannot work regularly. That sucks. There is a national scoring system based on 3 blood tests that determines when you are eligible for a transplant. But there aren't enough livers to go around, so you have to be pretty sick before you are considered for surgery.
There are a lot of blogs out there about chronic illness and I can recommend some of them to you. One that comes to mind first is called Chronic Babe. Type it into Google and you'll find it. It doesn't matter what severity your chronic illness is – the dailiness of it can be very draining on your body, your mental health, your spirit. I do a lot everyday to deal with that, and I'll be sharing more about that as I continue to post.
And I won't forget to write about Florida and its politics! As for Florida weather, there's a hurricane forming in the Gulf now that the meteorologists are predicting will head for Texas. Ha! Floridians know hurricanes do what they damn well please.
Sunday, July 24, 2011
Sometimes Sundays...
I got bogged down by the early oppressive, sweaty, nasty heat of the day and a search for Violet the Cat. I eventually had to call on the services of my sister and brother-in-law's (Diane and Jay) black Lab, Nimitz. Jay, Nimitz (on leash), and I flushed Violet out of her favorite hiding place. The little brat. The picture of Jay on one side of her and Nimitz and I on the other side, all yelling and barking reminded me of cattle-herding that I used to do in Colorado, and I started to say "cattle" but it stopped at "cat-" just as Violet gave Nimitz one huge, open-mouthed hiss and tore off towards the house. I was so mad at her but I couldn't stop laughing because we had just herded a cat. But it was only one cat. I go through all the emotions – anxiety, the pictures of her injured, anger at her for not responding – and get hot and sweaty, too. I took a shower and fell on the bed for a couple of hours.
The rest of the day was spent indoors – lunch with a friend and a movie in an icy-cold theater. Florida is a challenge in the summer for everyone. Then I see a couple of old Floridians sitting in the front of (our only) Starbucks, midday, not completely in the shade, and I just walk a little faster toward the door.
The rest of the day was spent indoors – lunch with a friend and a movie in an icy-cold theater. Florida is a challenge in the summer for everyone. Then I see a couple of old Floridians sitting in the front of (our only) Starbucks, midday, not completely in the shade, and I just walk a little faster toward the door.
Saturday, July 23, 2011
Beginning
This is a brand-new blog. I also have a website which I'll keep when I learn what to do with it (www.danallyn.com). But all of a sudden today, I was offered a Blogspot blog, and I thought, what the heck. I've been wanting to start communicating to my peeps and to meet new peeps - FOR MONTHS! I have to dive in somewhere! So, here's my dive - splash! splash! splash!
I'm not sure what my focus will end up being. I have a number of choices, but two stand out - chronic illness and organ transplant, and politics especially from Florida. This is a very wacky place to live even if you just consider the terrain, the differing environments, the gators, the amazing birds, and even more the amazing (in so many ways) people. Then if you throw in the demagoguery of the political creatures that attempt to run the state and the counties with the stranglehold that they do, you have a mix that can't be beat by any other state in the country. Even California, folks, which looks tame next to Florida.
I will LIVE for your comments. Seriously. I would love to hear what you like, don't care about, what you wonder about....and on. I'm going to write daily, even if it's a sentence or two. So, stand by!
-Dana
I'm not sure what my focus will end up being. I have a number of choices, but two stand out - chronic illness and organ transplant, and politics especially from Florida. This is a very wacky place to live even if you just consider the terrain, the differing environments, the gators, the amazing birds, and even more the amazing (in so many ways) people. Then if you throw in the demagoguery of the political creatures that attempt to run the state and the counties with the stranglehold that they do, you have a mix that can't be beat by any other state in the country. Even California, folks, which looks tame next to Florida.
I will LIVE for your comments. Seriously. I would love to hear what you like, don't care about, what you wonder about....and on. I'm going to write daily, even if it's a sentence or two. So, stand by!
-Dana
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