Thursday, August 16, 2012

Thyroiditis Part 3: The Annoying Summer Sequel I Did Not Want

This is the summer sequel I wanted.
(Image: f-yeahstruttingleo)
I feel like crap. And since I try to model non-whiny behavior for my kids, I'm trying not to whine and whinge around the house constantly.

Therefore, I'm going to whine here. Because really, what is a blog if not a place to whine about the crap your family is tired of hearing about? That's pretty much the definition of a blog, now that I think about it.

Last week I came down with some kind of virus. It involved all the symptoms of meningitis, except not nearly as severe. It was "Meningitis Lite." I ended up calling my doctor over the weekend, and he agreed that whatever I had was viral, and not serious enough to be bacterial meningitis in any case, which is the bad kind of meningitis. However, he said that if I got worse, I should go immediately to the Emergency Room for a spinal tap.

It kind of got better, although not all the way better, and then it got worse. And I developed new symptoms, like joint pain in my fingers and toes, insomnia, and feeling like I'm constantly on the verge of a panic attack. All of which are suspiciously reminiscent of last summer's epic adventure, Thyroiditis: A Not Entirely Fictional Disease, and its irritating sequel, Thyroiditis Part 2: Hashimoto's Thyroiditis vs. Godzilla.

So, I feel worse, but obviously, the last thing I'm interested in doing on a sunny Thursday morning (or ever) is getting a spinal tap. Cookie had to get one at age 2, and I can still hear the screams in my head. So I went to my doctor instead, who said that

a) Whatever the virus is or was, it's not a meningitis.

b) It may have triggered a flare, or relapse, of the Hashimoto's. Blood work and good times ahead!

I believe we can infer the following:

a) It's very likely that I have Blue Shadow Virus, a bioweapon used in The Clone Wars. Basically, any time anyone in my family is sick, it's Blue Shadow Virus. Sometimes it's healing to play this level in Lego Star Wars III: The Clone Wars, but not always. Help me, Padmé Amidala, you're my only hope.

b) My body, much like Hollywood, is incapable of coming up with new ideas, and instead is recycling the same crap I didn't want to see in the first place.

This year, the part of Hashimoto's Thyroiditis will be played by Strutting Leo.

Which reminds me of this thing I saw and wanted to show you, and then forgot because I haven't been taking my Adderall, and then remembered.

This:

Image: Memebase
Anyway, back to the whining.

On the up side, it's summer so I don't have to schlep the kids back and forth to school while feeling like crap. On the down side, it's summer, so I have to act as translator, referee, injury-preventer, and social scheduler, while listening to constant echolalia, opening food packages for people with fine motor delay, and feeling like crap. A lot of the echolalia, by the way, involves the movie Oliver!

I know you're totes jealous and wish that you, too, could listen to the same two lines of "You've Got to Pick a Pocket or Two" over and over and over and over and over. Although many of you have kids with echolalia, so perhaps you are already listening to those same two lines, in which case, you may borrow my noise-cancelling headphones.

Also, I randomly have swimmer's ear at the same time as all this. I just had to have drops in my ear for the first time in my life, and now I see why kids hate it so much. Man it feels icky to have stuff slime-ing around in your ear.

Yeah, I know it's not like things are all that bad. There are people with way worse problems. But sometimes, you just gotta vent a bit, so that you don't (allegedly) start throwing frozen fish sticks at your neighbors who will not stop swearing so loud in their backyard that I can hear it inside my house with the windows closed.

So there's my whine for the day. Would you like to whine? It's rather satisfying. Please whine in the comments below.

Tuesday, August 7, 2012

Is Autism a Reason to Deny a Heart Transplant?

Paul Corby
(Photo courtesy of the Corby family.)
Paul Corby, a 23-year-old Pennsylvania man, needs a heart transplant.

He has a rare, congenital heart condition called Left Ventricular Noncompaction (LVN).

Paul's father died of a stroke at age 27 due to undiagnosed LVN. Paul has already had three mini-strokes. His heart ejection fraction (the ratio of blood pumped through his heart) is only 20 percent.

Paul's cardiologist referred him to Penn Medicine at Radnor, part of the Hospital of the University of Pennsylvania.

The transplant center at Penn Medicine decided not to put Paul on the heart transplant list, in large part because he is autistic.

Yes, you read that right.

Paul Corby was denied placement on the heart transplant list because he's autistic. 

Paul's mother, Karen Corby, has been trying to get media attention for over a year. By chance, one of my blog readers forwarded her change.org petition to me.

Paul's case echoes that of Amelia Rivera, a a four-year-old girl with Wolf-Hirschhorn Syndrome, who was initially denied a kidney transplant by the Children's Hospital of Philadelphia (CHOP) because (and I'm quoting from the hospital's documentation here) she is "mentally retarded." I'm taking it as a good omen that today I got the good news that Amelia will be getting her kidney after all. (With Transplant Approved by Hospital, Amelia Rivera's Mom to Donate Kidney)

Amelia's situation turned around after blog posts, social media, mainstream news outlets, and a change.org petition created a PR nightmare for CHOP. That change.org petition was started by my pal Sunday from Adventures in Extreme Parenthood, by the way.

CHOP, a hospital I hold close to my heart for saving Little Dude's life, has since apologized to the Rivera family for how it handled Amelia's case, and has changed its policies. Legislation was passed in Amelia's home state in New Jersey that would penalize any hospital that denied a transplant to a patient on the basis of intellectual disability.

Now, I'm not a doctor, and I don't even play one on TV, but it strikes me as both unethical and discriminatory to use autism as an exclusionary factor in deciding who gets an organ transplant.

Paul's story needs to be shared like Amelia's was. This needs to be addressed, and on a national level. As our kids get older, they are going to need healthcare and medical treatments that have nothing to do with autism. People age. They get diseases and disorders. Things fall apart. Sometimes, people need new organs.

Will your child be able to get an organ transplant if he or she needs one? Will mine?

I interviewed both Paul and Karen Corby, as well as leading national bioethicists, for my post on Strollerderby. The Corbys gave me permission to share the actual letter from the transplant facility that lists autism as a factor in deciding not to give Paul a transplant.

As hard as it is for us, as parents, to see things like that in black and white, please take the time to read and share the full article, Family: Young Man Denied Heart Transplant Because He's Autistic.

Please take the time to sign and share Karen Corby's petition on change.org, Help My Autistic Son Get a Life-Saving Heart Transplant.

As a human being, I'm appalled. As the mother of two kids on the spectrum, I'm terrified.
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