Live IU Transplant Twittercast

"An organ donation is really helping TWO people: the recipient, and the next person on the waiting list." -Dr. Goggins

About three weeks ago, IU performed a living kidney transplant. Of course, this is a wonderful thing, but in itself isn't particularly newsworthy. However, they decided to do this transplant involving two living (friends) patients--a kidney donor and a kidney recipient--live. Not on live television, but on social media via Twitter. This is called a 'twittercast' for those who aren't up-to-date with social media terminology. 

http://www.latimes.com/news/nation/nationnow/la-na-nn-live-tweeting-kidney-transplant-20120613,0,4934514.story

Taking Care of Business

I am very happy to report that Dad is back in California! (This is pretty overdue--he actually flew home 11 days ago...) It's hard to believe that this journey has come this far. I actually am extremely relieved about all of the progress Dad has made, but I have been overwhelmed with many different emotions since I came back to New Jersey on May 19. In fact, I think I'm just overwhelmed.

I think I am still processing everything that happened the past few years, months, and weeks. Getting back to my life at home and work has also been a strange adjustment. I have a new appreciation for life as the cliche goes, however I'm having trouble balancing that with my usual to-do lists. Aren't they all intertwined? I want to paint my bedroom so I enjoy the space more, but why am I 'wasting a weekend' if I can be enjoying some precious time with friends or family? I want to plan a vacation, but how can I book something before I know when I could see my parents again? Why would I spend time blogging at all anymore? Yet--shouldn't I spend the time to maintain the intention of this blog and capture the experience of everything related to my father's liver disease--particularly the good news and emotions?

Leaving On A Jet Plane

I cannot get Peter, Paul & Mary's song Leaving On A Jet Plane out of my head the past few days. The song has a pretty similar meaning to what I have been feeling lately (except I'm leaving my father, of course). Dad also has been playing his Peter, Paul & Mary (PPM for short for today's purposes) Pandora station a lot, so I have heard many PPM songs over the past several weeks, including this one. In fact, I brought in my father's iPad into the TICU and played that station for him hoping that it would help relax him given all that he was battling. Last week, in the waiting room at SOPA, I even taught Dad the concept of putting headphones into the iPad to listen to Pandora and he was singing along to this station. Perhaps even he has a lot of PPM songs stuck in his head now, too.

I'm ready to return to my life in New Jersey. However, I am coming back with a very new perspective and I'm fairly weary. To say that I am grateful for my father's life-extending and quality of life-improving transplant would be a gross understatement. That being said, I also have endured a lot of stress over the past 6 weeks. Thankfully, I believe that Dad is truly medically stable and more independent and I feel more comfortable flying back home.

"You Are Not Boring. We Like Boring."

Not only have I learned a lot about transplants in general in the 5 weeks since I have been here in Indianapolis, but I can now begin to appreciate that the IU transplant program is very impressive. I could describe at length how the team here work well together and do their respective jobs well and certainly saved my father's life.

Yes:
The medical team at Indiana Health University Transplant saved my father's life and I am incredibly happy that Dad endured the move to Indianapolis and the prolonged waiting process here

Dad going for a stroll around TICU with 2 nurses on Day 6 (and a nursing student trailing)

Dad working with one of the physical therapists on the OTU

Facebook Helps to Increase Organ Donation Awareness

I came home from the hospital last night to see an article that describes how Facebook is going to start encouraging organ donation through the ability for members to share their organ donation status on the ever-popular social networking website:

http://www.usatoday.com/news/health/story/2012-05-01/Facebook-organ-donation-feature/54671522/1?fb_comment_id=fbc_10150792658168770_23024082_10150792715548770#fa5b3ac9

I thought the above article to be incredibly timely and interesting. My entire family has been very thankful for the gift of life that my father received. I hope that this outreach helps more families like mine.

Hospital Visits and Outings

I have a confession to make: the past 3 weeks have been very, very challenging for me. I also really hate to complain: Dad's prognosis is very good with the shiny, new liver that is still working well, Dad seems to have overcome ARDS, and Dad is still Hepatitis C-free.  I tend to be more optimistic than my father, however, going through all of the challenges since Dad had his transplant have taken a toll on me.

Thankfully, I had my husband and a few family members out here for a bit of the past couple of weeks. Unfortunately, my husband went home last week and the rest of the family will be leaving soon. Like so many things, I take for granted how nice it is to have people around and am starting to get anxious about being alone with Dad once again in a couple of days. It makes me realize how tough Dad has had it while waiting for the liver transplant alone in a hotel room in Indianapolis while feeling sick and now having only a very short visit while actually conscious with anyone other than me. Again, how can I really complain?

Thankfully, I have had some moments that have provided some emotional relief for myself. I have been able to get a little gym and yoga time in lately and went out to a few restaurants for dinner the past week or so. Today, a few of us took Dad outdoors to get a break from the hospital room for a break and the weather was fabulous. To sit outdoors for a few minutes and enjoy the sunshine was great. We even snapped a few photos to mark the milestone:

Dad showing-off his adorable outfit

Winning the Lottery

I realize this is cliche, but I spend a lot of time thinking about what I would do if I won the lottery. As the Mega Millions is over $500 million this week, there is a lot to dream about. Completely unrealistic, but kind of fun. I try to buy $5 every time the pot grows past $100 million--something I learned from watching Dad do that when I was growing-up--and consider it money that will promptly be wasted. However, you can't win if you don't play, right? Strange, too--I don't gamble at all in other ways, but I feel compelled to play the lottery and continue to have big, unrealistic lottery-winning fantasies.

In past years when the lottery peaked above $100 million, I would think about having prettier household items, traveling to more amazing parts of the world, and a private helicopter to get me around so I never have to sit in traffic on the Pulaski Skyway again. I really don't think I'm too different than many people when I daydream about these things. This week has been giving me a lot to think about what I would do if I won the lottery. It has not been particularly easy week for me:

Topic of the Week: Public Commentary Continued

I have come across a few articles that are interesting and timely that I thought I would share. Either I am more aware or there is an influx of stories about organ donation this week. I suppose it could be a combination of both. I can really only process so much information these days, but I am also a bit compulsive, so I read both articles and figured it would make sense to share them here.

A close family member happened to listen to part of an NPR segment that interviewed the author of the controversial WSJ editorial that I began to discuss in my last post. Here is that NPR article and audiocast: this is the audio link and this is the transcript link. I happened to listen to this while at the gym yesterday and was pleased to hear that Dr. Richard M. Freeman made some very convincing, strong arguments to refute what Dick Teresi was claiming in his new book and the WSJ editorial I discussed. At one point, Dr. Freeman even claims that Teresi is "flat-out wrong."

http://dms.dartmouth.edu/news/2009/10/28_freeman.shtml

Public Commentary

My goal is not to preach to anyone or tell my family's stories to the general public. Yes, I have a blog. Yes, I often share my opinions--and strongly voice them. However, I am mainly doing this blog as an outlet for myself but also to keep some closer friends and family updated. I try to avoid broadcasting this information and also try to keep this somewhat anonymous. This is an extremely personal topic for my family, however there are many aspects of this situation that are impacted by public policies and opinions. Some I have already described, such as the national transplant system method of allocating organs--specifically livers using the MELD system. Others I have not brought-up yet, including the baffling low number of organ donors in this country.

I tend to get very frustrated with most media outlets easily about a range of topics: how the pharmaceutical industry is portrayed and how politics are covered as two examples. I actually get frustrated enough that I often avoid the news. However, in order to keep up with whats going on in my industry and the rest of the world, I try to listen to NPR and review articles in specialized forums, including the Wall Street Journal (WSJ) Health section. I came across one article the other day in the WSJ that I felt I had to bring-up in this forum since it was another case of a public opinion that the media is only exacerbating an ongoing problem in this country. In this case, this public opinion impacts Dad's situation.

The WSJ published an opinion by Dick Teresi titled What You Lose When You Sign That Donor Card. In case you don't have time or interest (or have access) to the article, the author talks about all of the rights that

I'm Batman!

No matter where I am or what I am doing, I feel like I have an alter ego these days. My (internal dialog) mantra last week was "I'm Batman!" anytime I couldn't rationalize a particular situation.

http://trailers.apple.com/trailers/wb/batman_begins/trailer/


People at work have no idea what's going on with me and my family. I prefer that it stays that way, however it is so odd to have so much going on in my head as well as the daily phone calls, emails, and occasional trips where I'm missing work. I know plenty of colleagues wonder what I'm up to and make (incorrect) assumptions. Part of me wants to tell everyone the whole story--have a little sympathy before more judgements are made about my occasional run down the hall to get into a conference room for a personal call or a missed couple days of work without talking about where I went or why I'm so exhausted and low-energy these days.

Preparing for a Roller Coaster

I have loved roller coasters since I was born. Literally. There are stories of me crying from my stroller when I couldn't go on the bigger rides at various theme parks when I was barely old enough to talk. The day that I was tall enough to go on Space Mountain for the first time was one of the highlights of my life. And now I am on the ultimate emotional roller coaster: Dad waiting on the liver transplant list.

I have to say, like any other stressful situation, you can never truly be prepared. I have been through some tough times with my parents, yet the past month has been something I have never experienced before. Some days I'm feeling hopeful (even excited!), other days completely terrified, and others completely exhausted. I explained in my last post a little about how the national transplant list works, but this process is painful. Period.

The past week has been about as extreme of a roller coaster I have ever been on.

Life's Not Fair

I suppose this blog is meant to talk about Dad's current situation, therefore it would seem that his liver condition defines him. Like so many other people with life-threatening conditions, that is far from the truth. In fact, it's hard to reconcile that someone that I have always looked-up to is in this terrible position through no fault of his own with so much out of his (and my) control. [Yes, friends, I am a control freak. I know.]

It's not fair!


OK, I got that out of my system. For now.



http://iamlegendcrossfit.blogspot.com/2011/02/when-lifes-not-fair-get-over-it.html