Sunday, February 21, 2010

Down for the Count

On Friday I had been at work for no more than an hour when I suddenly realized that I had a cold. I looked at the clock and noted the date and time because I'm sure that this will play an intricate roll in my being sick as a dog. For instance, three weeks from now I can look back and say: "I've been sick for three weeks." Or it might be that in 5 days the cold will disappear and I will say to myself, "That was the shortest cold ever." In any regard, it is intricate. At least that is what my OCD was telling me at the time.
Anyhow, I waited for 9 a.m. to roll around so I could cancel my Monday dentist appointment, because that would have just been rude showing up all snotty and sneezing and blech. All though I'm pretty sure I would have called and canceled Monday anyways, on the account I feel like crap. Plus we had a dinner engagement for tonight that I was looking forward to and we had to push that back.
This morning I woke up and my head feels like it wants to explode. I can push on my eyelids and feel a squishy feeling behind them. Mucus. A hot wash cloth seems to help with that, but I'm not going to stand in the bathroom applying warm compresses over my eyes every 30 seconds for an hour if all I'm doing is getting wet. Maybe I'll just rub on some more Vicks and go back to bed. After I have some mojo Theraflu.
I can't remember the last time I had a cold that felt this bad. But I do remember making a mental note of it because I thought it might be important.

Sunday, February 14, 2010

65 Red Roses

Over the past several months I have taken a personal interest in organ donation. I am not talking about pounding the pavement and meeting and greeting people who will get the wheels rolling, but more of self-interest because I think organ donation is important worldwide. I will write a post every so often that reflects this, or I will post a banner on my sidebar to remind people they can sign up if they haven't already. I actually do very little when it comes to donor awareness, but I still try to get the message out there whenever I can.
A few months ago after I started having breathing issues, I found myself exploring the internet looking for answers as to why I had trouble breathing and losing my voice when I talked. Unfortunately I didn't find out anything, but I discovered some sites that had to do with Cystic Fibrosis. I soon discovered one site called
65 Red Roses
and I watched a video about a young girl -- 25 year old Canadian Eva Markvoort -- who's been struggling with this awful disease all of her life. Despite all of her hardships, she continually maintains a beautiful, kind and spirited sense of self that is uplifting for all who meet her. She has been a powerful inspiration to me and for many others.
In 2007, the idea for a documentary about Eva's life and the journey she's been on was just in the making. Eva had been told by doctors that she probably only had a couple of years left before she would need a transplant. The clock was ticking.
On Monday, Nov. 16, 2009 65_Red Roses, a documentary aired in Canada on the CBC News Network's The Passionate Eye and since then has won several awards. I was sad to miss the premiere but unfortunately it has not yet come to the United States. From what I understand it is waiting for someone who can sponsor the program before it can be brought here for viewing.
The two filmmakers, Philip Lyall and Nimisha Mukerji, had hoped that their documentary would inspire people to sign up to be organ donors. I can only pray that it worked.

The other day I was visiting Eva's LiveJournal website and there was a video post titled "I love you all". I was on a computer that didn't have a media player hooked up on it so I couldn't watch the video. Looking at the comment section I noticed that there were over 900 comments on her post. I took a short breath and let it out with a prayer. Something was happening; her page had gone viral.
I was wondering if this was it. Was she getting another transplant? I read a few comments and as usual they offered her comfort and prayers. But they did not seem like the kind of comments you would get before going into a transplant. They seemed sad and I could only surmise that something was wrong.
A few hours later when I got home I turned on my computer and I learned that Eva's health had changed for the worst. She has been sick for some time now where she has been facing chronic rejection and has been staying at Vancouver General Hospital in Vancouver, British Columbia, Canada. The province has the lowest donor rate in that country.

On February 11, Eva posted a goodbye video telling all her friends that she didn't have very long to live. Her mom and dad and sister are gathered around her thanking everyone for all their support. They are biding time. Sharing memories. Hanging out with close friends and family.
I quietly cry and once again find myself praying for a miracle. It is very hard for me to comprehend this. The situation is hard to fathom; someone must die so another can live. Everything must be perfect. As if a double lung transplant wasn't already enough.

There isn't a lot that I can do. But while I keep a journal documenting my own transplant experience, I can occasionally remind people that there is something they can do. Consider being a donor. Consider what you might have to offer. Consider the fact that you might save someone from dying and that you might bring some family the gift of life and happiness.

Eva, you are in my prayers...

(On a side note, I'd like to say that there are literally tens of thousands of people worldwide who have Cystic Fibrosis. And while this post was written with Eva in mind, and it was meant to drum home the necessity of organ donating, I in no means wish to take away from all those who live and suffer from CF on a daily basis. There are approximately 1,000 new cases of CF diagnosed each year.
Each year thousands of people are waiting for vital organs and tissues so that they might have a fighting chance at life.)

Saturday, February 13, 2010

Why I Haven't Been Writing...

  1. Angry
  2. Confused
  3. Got the saddies
  4. Tired
All of the above.

  These past few days have been hard for me. I've been angry. I've been sad. I've been hopelessly fighting a battle within myself.
The doctor broke it down to me in no uncertain terms: "You are sick and your liver is getting worse."
Again I heard the story about the liver being a big processing plant that filters out all the poisons and produces nutrients for the body. When the liver isn't working the poison looks for other places to go. You get nauseated. There are aches and pains. There is the unyielding desire to sleep. You get confused. All of these are signs of encephalopathy. Untreated you may slip into a coma. The last stage is death.
"We need to clear your head." He says.
We go over all of my medication and he tells me what he wants me to do. First we are increasing the dosage of the beta blocker, and the Neomycin and the Omeprazole and the Lactulose. We are getting rid of the muscle relaxer and the anti-nausea medicine and the Ambien.
Fortunately I wasn't counting on any of the drugs he took away. The nausea medicine rarely worked. The Ambien I didn't use very often and the muscle relaxer was for muscle cramps and those pills haven't been helping out that much lately.
The doctor explains to me again about the importance of staying on the Lactulose. "It is your friend and it will save your life. The alternative is that oneday, Lois, will have to call an ambulance and they will load me up and bring me to the hospital and they will shove a tube down my throat and deliver the lactulose this way on the hour every hour until I come back around."
So I guess there's that.
Anyhow, Lactulose is this thick syrup that you drink so that the ammonia that is stuck in your body can hitch a ride out while you are sitting on the toilet having diarrhea. I don't like to talk about it, but that is its purpose; to get the poison out of the body so it doesn't go to the brain and kill you.
Now my problem is that I don't take the medicine on my work days because who the hell wants to have diarrhea all day long during a 12 hour shift? Me...I don't like to. But that's all a thing of the past now and I'm taking the shit 3 times a day every day (Yeah, I did a swear there) and I want to cry. I don't mind it so much at home when I'm off of work, but this work thing really sucks. But hey, I'm alive and not in a coma. So I guess I got that going for me as well.
In conclusion: doctors suck. But they are saving my life so I guess I will listen to them.
I'm still mad.