Tuesday, November 16, 2010

Cloudy Interactions

I’ve gained ten pounds since coming home from the hospital. My nutritionist might be happy, but I’m not. Chris tells me not to worry about it until January when I can stop ‘snacking’ in between meals (as instructed) and get back on my exercise and calorie-limitation diet. Now I need to lose 30-35 pounds to reach my personal goal! I can’t wait to get back on track in 2011.

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Last Wednesday I went to the IMC a day before my nephrostogram (“tube removal”) was scheduled because I was leaking from the insertion site in my stomach again. The leakage wasn’t as bad as before, but it was still unpleasant.

I was told the angiogram team was too busy to squeeze me in, however I was given a bunch of tape, gauze, and pads to keep me as dry as possibly until my appointment the next day.

Fair enough.

I went home and changed into sweat pants and an old T-Shirt. If I was going to leak all night, at least I could do it in comfort.

Upon examining the stay-fix bandage covering the insertion site, I noticed it was soaked and needed to be changed. After removing the damp bandage, I noticed the nephrostomy tube was sticking out a lot longer than it should have been. I tried to push it back inside of me, and to my surprise it went in easily and without pain or discomfort. Amazingly, this solved the leakage problem! Nice!

The next day, I went to the hospital and had the tube removed. During the process, the doc noticed some “cloudiness” in the fluid. She said this could be a sign of infection. So I lay there on the small procedural bed while she called Dr. Stinson from the transplant team in the adjacent building.

By now, this sort of thing is so normal, I don’t even flinch. My immune system is suppressed and always will be, so any little thing needs extra caution and concern before just treating it in a normal way. No big deal.

They decided to give me a week long dose of antibiotics. I showed no symptoms of anything serious- I wasn’t sweating, experiencing fever or chills, nor was I in any pain, so they let me go home. Once again I left the IMC hospital with nothing attached to me. BIG YES!!

On a side note, my body is absorbing the anti-rejection meds very quickly, so the dose has dropped to less than half the amount it was on the day of my initial release. After the 1st of December, I will stop taking 3 other pills completely, and my anti-rejection meds will drop again so it is very possible that I will take less than 10 pills a day! We’ll see...

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I was given the link to my donor’s obituary from a friend online. I also searched for his name on Facebook and found a memorial page as well as his personal profile. On the memorial page, someone posted a video set to music using photographs from his life. It was difficult to watch, but very touching. I feel a mix of immense sadness and gratefulness all at the same time. It’s hard to separate the emotions because they are so interlocked in my head and in my heart. I am saddened that this person was taken at such a young age, yet I am grateful that he made a choice to help so many people. I will always remember him.

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I met a woman online who had a k/p transplant in February of this year! I am excited to hear from her because our surgeries happened so close together. She lives in Texas with her family and has started a blog of her own. She is a very positive person and has nothing but good things to say about her transplant team.

She’s posted pics on Facebook, including an album called “Before and After Transplant.” I looked through them and noticed how much more vibrant and healthy the “after” pics were compared to the “before” pics.

Now I understand what people mean when they say I look so much better...

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For those who might not know, I used to do a podcast with my ex-wife Erin, called “Just not Right.” It ran for three years over the internet and can still be downloaded via iTunes or straight from the website: http://notrightpodcast.blogspot.com/2007_11_01_archive.html

It was a lot of fun! Because of its success, the local paper ran a story on us, and we were even invited to appear on a local radio station here in Salt Lake City a few times.

Last week, my good friend Bart told me he was appearing on a local internet radio show. I tuned in to discover that the DJ was an old friend of ours who we hadn’t seen in almost 20 years! Her name is Terra and she is the host of a show called VOX HUMANUS that airs every Thursday night on http://utahfm.org/ from 6-9pm MST.

Last week, Bart and I were guests on Terra's show and we had a blast! It was suggested that we appear on VOX HUMANUS more often, so if you are interested, check it out sometime. It’s free, unregulated streaming community internet radio! And if all goes well, Bart and I might end up hosting our own show. We’ll see what happens.

Stay tuned…

Monday, November 8, 2010

Contact from the Donor Family

Saturday, completely out of the blue, I received a letter from the donor family.

Chris and I had just come home from seeing “Nowhere Boy” (the story of John Lennon as a teenager), at the Broadway Cinemas in downtown Salt Lake City. It was an awesome film, but very emotional. We both cried while watching it, and were ready to unwind and eat some dinner at home.

When we pulled into the garage, Chris took some grocery bags into the house. I walked to the mailbox and grabbed the pile of letters and advertisements inside. As I flipped through the mail, I noticed a large white envelope from IMC hospital. I thought I knew what it was...

You see, the last time I saw Dr. Cline, I forgot to bring my health insurance card with me. He said they would bill my health insurance anyway, but if it didn’t go through they told me to let them know so they could fix it.

I thought that’s what the envelope contained.

I walked to the recycle bin on the side of our house and dumped the junk mail inside. Then, I walked back towards the garage and tore open the white packet.

The first thing I saw was a pastel greeting card envelope. “What..?” I thought to myself and stopped walking. The flap was not sealed. I slid out a greeting card inside which turned out to be a really nice “Get Well” card signed from “A woman, A man, & Family.” (The names were written, but I will leave them out of the blog to respect the family.) Tucked inside of the card was a plain white piece of paper folded up.

I opened the piece of paper and read a hand-written letter from a woman I have never met. As soon as I read the first sentence, I knew who it was from and was immediately overwhelmed.

She wrote about her son, his interests, his job, how he passed away, and how happy his entire family was that he was able to help me. She also wrote his name. All of this made me visualize my donor as a real person with a great life and an amazing, loving family. I was stunned to learn how young my donor was. He was barely an adult.

Chris walked outside and saw me standing in the driveway reading the letter. She walked over to me and asked what I was reading. Then she saw my eyes and asked what was wrong. I handed her the letter and burst into tears. We hugged and both cried really hard.

I want to share an excerpt from the letter because I feel it emphasizes the importance of communicating your desire to be an organ donor with your family:

“The day before he died, we had a conversation about organ donation. That’s how we came to do this. He had told me.”

I spent a very long time the next day writing a response to the donor family. I re-wrote many paragraphs, changed things around, took things out, added things in, until it finally was complete. I am taking it to the IMC transplant center today after work so they can forward it to the family on my behalf.

Last names are not included, nor are personal addresses or contact details of any kind. I included the URL of this blog in case the family wants to read about my experience, or befriend me on Facebook. For me, it would be awesome to be in direct contact with my donor's family, but I will leave that decision to them.

I am just grateful that the mother took the time to write to me, and to send me an amazing card. It means a lot and I will never forget her son and her family.

They have changed my life, and now that I know a little about the donor and his family, they have change my entire perspective on the transplant.