The Transplant Issue

You may have heard about the 10-year-old girl with CF in Pennsylvania and the controversy surrounding her much-needed lung transplant. If you heard about this, feel free to skip to paragraph #3. If not, continue reading...

In a nutshell, this girl was in dire need of a new set of lungs. She was on the pediatric transplant list, which is normal. There are separate adult and pediatric lists for lung transplants. All children are also placed at the bottom of the adult list in the rare case that an organ would not match an adult first. There are simple reasons for this that have been scrutinized and evaluated, the main one being that most adult donors' organs are simply too big for children. Furthermore, the complications of a transplant are much more harsh for a child than for an adult, so success rates are lower. Where the controversy starts is her parents were able to persuade a judge that she was is such a need for new lungs that the judge overruled the list and include her on the adult list (at the top I believe) for a period of 14 days. After that time, they would reevaluate and most likely bump her back up again. This is monumental because never in the history of the transplant list has anyone essentially "jumped ahead in line."

I don't want to say too too much about the parents, because I don't know what they're going through. However, I feel I can comment on this a little more than the average person. I've read about many fellow CFers (that I've never met) to know a little about the transplant process, and the huge disappointments, decisions, and complications it can bring. This is not small matter. But, the more I read about this instance the more I wonder if the parents are just grabbing at media attention. They aren't raising awareness for CF, that's for sure. I've never heard of the mother ever mentioning anything about raising money to find a cure so others don't have to go through what her daughter went through.

Like many ethicists who question this bold move, I too do not feel this is right. I do not like the idea of a transplant list being decided in a court, by lawyers, judges, or politicians who know nothing about medicine. As some have pointed out, what's to keep more transplant patients from essentially suing because they are not happy with their placement on the list? And how do you decide if a child who is 10, has a 20% chance of success should get a pair of lungs, versus a 40-year-old that has an 80% chance of success? Again, these things should be left to the rules that have been put in place for that very reason, not the courts.

The story continues... lo and behold the girl did receive a pair of lungs during that time period. It was revealed Friday that she actually underwent two lung transplants (some sort of issue with one of the sets.) To me, this sounds fishy since most people wait years to receive just one match for organs, let alone two in a period of 3 days? The adult set of lungs had to be reshaped and cut up in order to fit her smaller body. The parents are obviously thrilled at the chance for her life to continue on more than it would have, had this not happened.

But what the media isn't talking about, or maybe doesn't want to touch, is the fact that by doing this, these people in turn put someone else in second place. I understand wanting to do anything and everything for your child, but it takes a certain kind of person to knowingly sentence someone else to a most-likely death by taking their potentially life-saving organs away from them. There is most likely someone else who would have been in line for these organs, or even two people now that two sets of lungs were used on her, but because of their decision to jump in line, Adult#1 and Adult#2 were robbed of their chance. And who knows, maybe their situation was just as grave as the 10-year-old's, maybe it wasn't.

That's why I think this entire case has opened up one big mess of problems. The transplant list is already complicated enough as it is; how to determine who is more worthy, more in need for something that is in short supply. And it's enough of a lottery already without adding this to the mix: will the organ even work for a person due to size, weight, height, blood type? There are set formulas and rules for this, which I won't pretend to know or understand, but I take comfort in knowing they exist. They give everyone the same chance whether you're fat, skinny, rich, or poor.

Or... they did.

It will be interesting to see how this affects the future of transplants. I hope it's an isolated case, but the floodgates have been opened. It's terrifying to think where this might lead.

Honey Mustard

I made a small discovery tonight that made me so happy: an easy way to make honey mustard. I wanted to put some on some sandwiches I was toasting, so I gave it a shot. It turned out awesome, and it's good to know I can throw together some honey mustard sauce with stuff I already have, versus wasting money on a bottle of French's.

So, to make some awesome honey mustard, just have equal parts honey, mustard, and Worcestershire sauce (wow, I just spelled Worcestershire off the top of my head correctly!) I promise it tastes good!

Neighbor Kid

Most of our neighbors keep to themselves, and I've only met 3 houses. They've all been really nice, and I'd say in general that we probably have a decent bunch of people on our street. Another on the corner waves all the time, but I've never actually gotten to say hi.

But there is a house across the street that kind of baffles Jarrod and I. Ever since we moved, we've always seen this boy outside playing soccer. He's usually by himself, occasionally his friend comes over. Come rain or 10" of snow (remember when we got that? Yep, he was out there in shorts and a tshirt playing soccer) it doesn't deter him. It wasn't until about April that I even knew he had a sister, because I saw a friend drop her off from school one time. She must spend all her time inside, you never would have known she lived there. Kids these days...

While I applaud this mystery boy for spending time outside kicking a soccer ball around instead of playing video games all day long, it's actually super annoying listening to it. And here's the part that baffles us...

He kicks the ball against their house, and not gently either. These are like I'm-trying-to-score-a-goal kinds of kicks. Their gutters are clearly damaged, I'm sure there are dents in the garage door, their bent  garage lights have all but fallen off, well actually one of them is missing.  Sometimes he kicks his ball against his dad's work van too.

Apparently the parents don't care. For one thing, I've noticed they're rarely home. But still, it just blows our minds that they would allow him to do this over and over. But then again, they don't care much about the rest of the outside of their house, they're also 'those neighbors' who let their grass get 1-2 feet tall before cutting it.

This past week

Since Tuesday of last week, June 18th, I have been in the hospital for usual, routine CF stuff. What a way to spend our 2nd wedding anniversary, I know, but such is our life. But what started out as a routine stay turned into a not-so-routine stay. WARNING: I will be blunt and at times graphic about what happened, so if you don't want to know, stop reading.

Usually I go in to treat my lungs, so we got started with all of that like normal on Tuesday. On Wednesday, the doctor ordered an ultrasound of my liver because my bloodwork came back showing my liver enzymes were elevated. Liver failure and complications is a concern in CF, so he wanted to see what was going on.