Clinic update

I had my regular clinic appointment last Monday, and all was well. The wrap:

• New needles for port access; mom got it on the first go when she accessed me a few weeks ago with the 1" needle. Apparently port likes 1" needle now, the 3/4" needle is a bit wishy-washy. Besides the fact that the 1" needle looks super-scary when being inserted, it actually lays under the dressing quite nicely and goes in very well. So that's a plus.
• CXR looks excellent.
• PFTs also excellent. 62/57, if you're a number person. If not, um...I can't explain what they mean. I think they mean this: the 62% is how much volume I blow out in 1 second, and the 57% is my lung capacity. Course they could be reversed. Either way, much better than pre-tx!
• Some med changes: I asked for my celexa to be knocked back to 10 mg. We upped it in 2006/2007, when I was in and out of the hospital and we thought it would be better at 20 mg. Which was fine then, but we never knocked it back down. Now I'm back to 10, and liking it so far. Drs. A &K also want to knock down the vfend from 200 mg to 100 mg. Vfend is a strange little drug that very few people take--I get a lot of 'huhs?' when I put it on med lists. It's a pre-tx antibiotic (meaning, I've been on it since, oh 2002? God prescribed it.). I guess since I"m about to hit 5 years, the chance of the bug coming back to cause problems is lessened, so we can knock it down to 100 mg. This makes me happy--the fewer drugs I'm on, the more I like--but it also can affect my tac level, so on the 14th I need to have a blood draw to check all that. Obviously we do not want the tac (one of the anti-rejection meds) messed with. I can't imagine it going any lower, since I'm only on 0.5 mg now, but I guess it could go up. Or maybe nothing will happen and my body parts and systems will all get along!
• Nothing special planned for the five year, just the normal testing. So sometime in June I get to spend 1 1/2-2 days at Children's being a guinea pig. :) It's not so bad. I get to catch up on my reading and my children's television.

CF bookshelf: A Thousand Tomorrows by Karen Kingsbury

In general, if I see a book has a CF angle, I try to avoid it.

Usually it's milked for maximum trauma and tragedy, and bears little to no resemblance to actual CF life. This was especially the case with the Lurlene McDaniel books that were so popular when I was in high school. If any of my friends read the ones with the CF characters, I cringed. The biology books were bad enough (so outdated!)--did fiction writers need to make life harder, too?

However, I am always open to being surprised. And I have been--once--with the book A Little Love Story. Not only is it a great novel, but CF is portrayed realistically! And some of the proceeds from book sales go to the CFF, so if you haven't bought it, um, do so.

So that brings me to the book in question, "A Thousand Tomorrows." I was randomly searching the Columbus Metropolitan Library database for CF books, and this popped up.

I general avoid her books, because, based on the plot synopses alone, they are treacly books just a step above the Romance Novel category, meaning we get stock characters doing stock character things (also known as--where Nicholas Sparks' novels are heading). But since CF was in this one, and I was going to the library anyway to check out the Oliver! score, I thought I'd pick it up.

Oh, I was so correct. Not only is it treacly to top all treacly novels, but there is so much tha tis just flat out wrong. The book was published in 2005--the year I got my transplant. So yeah, transplant technology at that time is something I'm pretty familiar with.

The author says in her notes that the inspiration for the book was a little boy on her husband's softball team. She says she talked to families about CF, and she gives information on the CFF. So that's all good.

What's not good is what's in her story. Essentially, the character with CF is used as a redemption device for the real protagonist, Cody, a pissed-off bull rider who's mad that his dad walked out on their family when he was a kid. He has a brother with Downs Syndrome, which is the reason his father left--the typical 'I can't handle it' excuse.

So Cody meets Ali, who rides in rodeos. Of course, this is supposed to be The Worst Thing Ever for her CF. Actually, any sort of physical exertion is good for CF patients; having taken riding lessons right before my diagnosis, I can attest to this! Ali doesn't breathe when she's in the arena because the dust and hay and all that can hurt her lungs. Um, if she was breathing, and exerting herself that way, she'd cough and that would be good. (And, most CF patients who are on the transplant list cannot hold their breath for 18 seconds, like Ali can in the book. Um, no.)

So Ali is admitted to a hospital in Denver after a rodeo, and her doctor springs the transplant discussion on her. Ali is, of course, shocked. Now, OK, in fairness, I was shocked too the first time my docs mentioned it. But Kingsbury's writing just makes this painful to read. Ali needs to be listed for a transplant ASAP. And of course she needs to stop riding. (If you're being listed for a transplant, most everyday things are out of the question. There's NO WAY she could've been riding. NONE.)

Well Ali wants a 'single lung' transplant, which CFers don't even get. What Kingsbury means is a "living lobe transplant", which is where two separate living donors are used to replace two lung lobes. This is generally not a permanent treatment--CFers require double lung transplants. That's a fact. The lobes will just get infected with the bugs from the 'native' lungs.

So after all this medical mumbo jumbo the reader has to digest, we get back to Cody, who loves Ali, who hasn't told anyone about her CF (this is actually accurate). They're in love. Cody wants to be a donor. Cody is a match! (Cue the inspirational music.)

Of course at this point, the story must mention how expensive all this is, how insurance won't cover it , yada yada yada. When you're listed for transplant, you meet with a financial person who works through all your options with you. Most insurance companies have some sort of transplant coverage. Is it capped? Yes (sometimes). Are your options limited,in some cases, as to center? Yes. But there is usually some sort of coverage. This is 2005, not 1985. Transplants are not exactly groundbreaking treatments here. Of course all we get here is the trite father pronoucement that "we will do everything we can to pay for it." (eye roll here)

So anyway. Ali gets her lobes (from Cody and her father). Of course we get the gloom and doom predicitions--only three years! (ARGH!!!!!!!!!!!!!!!!!!!!!!!!! I HATE THESE!) And she's talking, immediately after surgery? Um, no. You're on a ventilator for a few days. Hence, no talky.

And, of course, Ali's lobes reject and she dies. But at least Cody reconciled with his family! Which is really the entire point!

This book made me angry to read. If you've even considered reading it, don't. If you have read it, I'm very sorry you had to endure it. There are so many wrong, wrong, WRONG things in it. Even the terminology is wrong. Ali has a "compression vest", --she means the thAIRpy vest, which she doesn't describe accurately. She talks about Ali having four inhalers but never mentions an aerosol machine, which is what most CF patients use regularly. Inhalers are like a quicky treatment. Honestly, she treats CF more like asthma. Ali's mom does PT on her at one point, and Cody FREAKS OUT, like Ali's being abused or something. I taught one of my pre-tx boyfriends how to do my chest PT for when we spent the weekends at his parents' and I couldn't lug the vest (mine was one of the first ones, and it weighed about 1500 pounds...). It's not that scary, it's not even gross to watch! It's not like Ali's mom was inserting a chest tube.

The whole thing is just DRENCHED in melodrama. And Ali isn't even very likable! She's really bitter about having CF. Of course her sister, Anna, had it too, and of course, Anna died, so Ali is SUPER bitter. I'm not denying that you can get bitter. Heck, it's probably normal. But Ali is of the "ignore it and it doesn't exist" school.

It's so cliche, and so awfully written, that no one should ever, ever pick this up. Instead of doing a service to people with CF, like A Little Love Story does, by protraying us and our lives realistically and truthfully, Kingsbury makes Ali a stock character whose medical drama serves only as a plot point.

If you are interested in GOOD CF books, this is what I can recommend:
A Little Love Story
Breathing For A Living
Cystic Fibrosis: A Guide for Patient and Family (Hardcover)

Or, you can shoot me questions at janeandessie@gmail.com

I know, I know...

I say no more, BUT the triduum hasn't started yet (technically!) so I can still blog.
I had some testing today at children's--a thyroid ultrasound and blood work. The ultrasound was fine, at least fine in the sense of 'the tech didn't see anything large and scary that warranted immediate attention' fine.
The bloodwork went easier than usual--only two sticks--but now I'm going to have matching bruises in the crooks of my arms for about a week. Beautiful.

If I Never Knew You

If I never knew you

I'd have lived my whole life through

Empty as the sky

Never knowing why

Lost forever

If I never knew you.

--If I Never Knew You, Stephen Schwartz

How do you convince people that life is better than no life at all?
That all lives are worth living, no matter how painful? 

For some people...you can't.

I've written about this a few times here. But today brought it into a painful and stark perspective. There are people out there who think my life, and that of hundreds of thousands of others, is not worth living. 

Today's Dispatch held this example. I'm posting the whole letter instead of linking to it. 

My emphases in bold:

Pre-birth testing foe needs context

Wednesday,  February 24, 2010 2:51 AM

I respond to the Friday letter "Hitler would approve of pre-birth testing" from Thomas R. Marco. He references the killing of babies and asks "is reducing the statistical percentage of abnormalities worth such horrific acts?"
My answer is: You better believe it's worth it. Before others judge, they should know a little more about the "abnormalities." My daughter was born with Tay Sachs. My wife and I watched her suffer for just under three years.
We watched her slowly die and live a difficult and very uncomfortable life.
We watched and listened to her scream in pain and frustration for hours at a time. We watched her as she lost the ability to sit, to eat, to hear, to see, to do anything but suffer. Then we watched her die while she was in my arms. I carried her out to the hearse.
If any child can be spared that by pre-birth testing, then I am all for it.
Better yet, parents should have genetic testing prior to trying to conceive so that everyone's moral sensibilities can be assuaged.
Until Marco has spent a minute with a child whose short life is filled with suffering, I suggest he be more careful with his Adolf Hitler references.
KEVIN LEVINE
Bexley

So--his daughter's life wasn't worth living? 
He would have 'spared her' by not allowing her to be born at all.

This is MY letter to the editor. I sent it this morning, not sure if it will be published. But I want to share it with you anyway.
 ***
To the editor:
I was disturbed by Kevin Levine's "Pre-birth testing foe needs context" (Letters, Feb. 24, 2010). He states that "...if any child can be spared [suffering] by pre-birth testing, then I am all for it." I am sorry for the death of his child, and the pain that his family endured. But his logic is simply faulty.

Mr. Levine is essentially saying that I should not have been born, because that's the only way I would've been "spared."  I am twenty-seven years old, and was diagnosed with cystic fibrosis (CF) when I was 11. Since then, I have spent months in the hospital, had a two-week visit to the ICU, undergone countless tests, and, at the age of twenty-three, had a double lung transplant. Before my transplant, most of my days were spent sleeping. I hadn't the energy to do anything else. Even simple tasks such as brushing my teeth took enormous energy. I was in almost constant pain from the lung infections and scar tissue that are part and parcel with CF.

But I have never considered my life not worth living. I love my life.  I am a college graduate, am working on a Master's Degree, and have a good job. I have wonderful family and friends and an 11-year old godson. I have been under the care of brilliant doctors and nurses who have worked tirelessly to save my life. If I had not been born, I would have certainly spared myself and my family much suffering. But the joys of life would not have been mine, either.

My CF has made me who I am today, and I'd like to think that's a good thing. No matter what the challenges my life may have handed--and continue to hand--me, nothing is more precious than the gift of life.

Suffering cannot be avoided in any life. It's part of being human. Just because a person has to suffer doesn't mean that her life is not worth living. As Robert Louis Stevenson said, "Life does not consist in getting a good hand, but in learning to play a bad hand well." 
 ***

How can anyone--especially a parent--say that someone's life was so filled with suffering and tragedy that it wasn't worth living? How is that not monstrous?
My parents have watched all those things too, Mr. Levine. And I'm pretty sure I'll die before they will. They've had 26 years of it. 
Would I have saved my family money if I'd not be born? For sure.
Would I have saved them lots of emotional pain? Definitely
Would my brother and sister have gotten more attention? Absolutely.

Will you decide what men shall live, what men shall die? It may be that, in the sight of Heaven, you are more worthless and less fit to live than millions like this poor man's child. Oh, God! To hear the Insect on the leaf pronouncing on the too much life among his hungry brothers in the dust!

--Charles Dickens, A Christmas Carol

But...

Would they be better if I hadn't been born?
I can't answer that. If you never knew someone, how do you know what you're missing? 

But I know--and no matter what price I have to pay, it was worth it. The entirety of it.

I realize then that we never have children, we receive them. And sometimes it's not for quite as long as we would have expected or hoped. But it is still far better than never having had those children at all. 'Kate,' I confess. 'I'm so sorry.'
She pushes back from me, until she can look me in the eye. 'Don't be,' she says fiercely. 'Because I'm not.' She tries to smile, tries so damn hard. 'It was a good one, Mom, wasn't it?'
I bite my lip, feel the heaviness of tears. 'It was the best,' I answer."
--Jodi Picoult, My Sister's Keeper 

Radioactivity

So besides awesome Olympic watching last week, I got to spend two days at Riverside Hospital on the northwest side for an iodine scan.
As we recall--in October I had a thyroid biospy after a CT scan revealed a nodule on my thyroid. Prior to this, I wasn't even sure where my thyroid gland was. The biopsy was benign, so no thyroid cancer (which is fairly common for women my age, apparently), but I was sent to an endocrinologist at Riverside to investigate other thyroid issues that may be occuring. Part of that was the scheduling of an iodine scan, to see how my thryoid reacted to it. Apparently this will tell if I have an underactive or overactive thyroid, each with its own set of problems.
So, on Wednesday I went to Riverside's Nuclear Medicine Department at 7:30. Riverside is a very nice hospital, very clean and quite pretty. There are lounges scattered about with couches and tables and such, so you can read or work. There's also WiFi, but I didn't bring my laptop to take advantage.
After doing the registration paperwork at the desk (and forking over a $100 fee, wasn't expecting that), I sat down to wait. I didn't have to wait long. The tech, Lisa, came back for me and took me to the exam room. We went over my meds, and then she explained the procedure. I had to swallow two capsules, which contained a tracer so that when we took the pictures later, we'd be able to see certain things more clearly. I took those. 90 minutes later, I could eat, and 4 hours later (around 11:30), I was to come back to the exam room so we could take three sets of pictures and take some measurements.
After I swallowed the pills, I went to one of the lounges to read, write in my journal, things like that. This one had a fireplace, which was super nice.
At 9:30 (I was STARVING), I headed to the cafeteria to get a snack. It was Ash Wednesday, so fasting was involved--no meat, no snacks--but I hadn't eaten yet so I needed some sort of food. I bought a snack pack of cheese and crackers, and a USA Today. I did the crossword puzzle in an half hour and watched some of the Olympics on the television. The cafeteria was a  nice departure from the usual sterile, institutional atmosphere most places have (yes, Children's, your cafeteria counts. Sorry.).
After that, I returned to my lounge to read Signs of Life, the Scott Hahn book I'd be wanting for finish for months, and to write some more in my journal (I was so behind). I also bought a Better Homes and Gardens from the gift shop.
At 11:30 I headed back to the exam room and hopped up on the table. Lisa inserted the table into the scanner. It was sort of like a VQ scan, where the plate comes very close to the part it's scanning, so that the radiation doesn't just fly all over the room. Since it was my neck, and not my chest, I wasn't as claustrophobic as usual. I actually fell asleep during the second and third sets.
Then the tech took some measurements of my leg (no idea why, I guess some sort of baseline thing) and then my thyroid. These took two minutes each. After that, I was free to go, but not free to hang out with people. Gotta love being radioactive.
The next day I headed back around 9:30, did the two-minutes-each measurements again, and was gone. The instructions said to take two days off of work, so I did, but I wish they would've told me WHY for the second day. I guess timing had something to do with it. Oh well.
I should get the results sometime next week. We'll see what craziness my thyroid is up to (if any) then.

Housekeeping

The "My transplant story" tab has been updated with video! So you can get the quick gist of the blog by reading that (if you're new), or, if you're an old hand, you can see the videos. One is the longer (5 minute) spot for the Children's Miracle Network show. The other (1 minute) is a TV spot that aired on our local CBS affiliate.

(oh, and just for the record: I do not have bangs anymore. Bad look for me. And I do not normally wear gym pants in non-gym settings. It's just that no pants fit me. I weighed 83 pounds. My jeans were about "2 sizes too small." ) 

Clinic Update

Today I spent the morning of my day off with the kids at the Resort. It was a normal visit, nothing too special, and I had scheduled it for my day off so that if they wanted to do testing beyond the normal, they'd have time to do it.
First stop, as usual, was the infusion clinic, where, once again, the new port needle failed to work in my port. Thank God the rumor mill says the hospital will soon be switching back to the old huber needles that work. Mom has a stash at home for when we do port access, but at the hospital they do the new needles first. When the nurse asked me if it was OK to use the old ones, I gave an enthusiastic yes. My annual labs were drawn today, so that meant lots of blood for the lab to play with during the day.
After the blood letting, I went down to radiology where I had a CXR and a CT scan of my sinuses. We still keep tabs on those. Lately I've felt them draining so I figured this was excellent timing for some investigation.
Then up to clinic for full PFTs--which were stable--a visit from the new social worker, and then Julie and Dr. Kirkby. There were lots of bronchs going on today, so they were busy. I was unexciting. Dr. K said my sinus scan looked changed "but not terrible." So they are going to send it to Dr. Willet and see what he thinks. They will also set up an appointment for me to see him, since if I try to do it, I get stuck with a four month wait. It might be time for sinus draining surgery again, since I haven't had that done in 5+ years.
I left around 11:30, and headed to Katzinger's in German Village for lunch. I hadn't eaten yet today, and was hungry, so the huge Katzinger's sandwiches and French Onion soup were perfect. I had a book (Loot) that I"d bought at CMA yesterday, so I read that in the cozy deli and scoped out the artisan chocolate when I was done. It wasn't too crowded--civil servants (such as moi) had the day off, so I imagine that impacted the lunch crowd. But the roads were very clear, so that made me happy.
Dr. K said they would probably see me again in three months, which means post-birthday. I did see Dr. A and asked him if there were plans for a five year par-tay. He asked if I was paying. "Sure," I said. But I guess we'll work out the details of all the normal annual testing, etc., at my next appointment.

The Simple Woman's Daybook--January 18, 2010

Outside My Window:: 

Almost dark, but the snow is almost gone! Yay!

I am wearing ::

A Talbot's tee, jeans. 

I am Thankful For::

Days off; a good clinic report

I am Reading:

Loot: The Battle Over the Stolen Treasures of the Ancient World; The Kalahari Typing School for Men.

From the Kitchen::

A lot this week, starting with the Irish Soda bread I'm about to make.

I am Thinking:
That I have had an excellent long weekend. 

I am Creating::
Good food

On my iPod::

U2's All That You Can't Leave Behind

Towards Rhythm and Beauty:
I've done a good job (so far) incorporating some of my New Year's goals, like keeping my apartment clearer, saying the Liturgy of the Hours, etc. Now I want to step it up a notch.

To Live the Liturgy:

Liturgy of the Hours, in the first Ordinary Time book. Back to green vestments.

I am Hoping and Praying:
For Barb, a friend of mine who died over the weekend (she was a truly wonderful woman who was kind to everyone she met).

Around the House:

After bread making, vaccuming and doing some more clearing off of the kitchen table. That, it seems, will always be piled with stuff.

One of My Favorite Things:

Long weekends

A Few Plans for the Rest of the Week:

Wednesday and Thursday: Voice lessons both days, to prep for an audition next Monday. 

   A Picture Thought  I'm Sharing:

From the Chihuly Exhibit I attended yesterday

 

 

Seven Quick Takes Friday Vol. XXI

I.

So we're going to start today with a cute story. I was at Barnes and Noble, purchasing guidebooks for our Family Vacation this summer. I got to the register, and, since I was paying with a check, I had to show my driver's license.

The cashier (who was aobut my age, and cute) looks at it, and says, "This is the happiest license picture I've ever seen."

"I didn't see a reason not to be happy," I said as I slipped it back into my wallet. (Really, I don't. Why do people look like convicts in those photos? Do you really want to be looking at that for years?) But this also sort of sums up my life philosophy--why not be happy, when you can? Even in your driver's license photo.

II.

The Great Thaw is upon us--the snow is melting, I can see my deck again, and it's mostly slush now. I can deal with slush. My car likes slush better than snow (although probably not cosmetically). It's supposed to be....(wait for it)....in the forties this weekend. Forties! Yes!

III.

Since it's going to be warm(er), I really need to do a good pantry stock-up. I get a Trader Joe's gift card every year from my parents at Christmas, and I use it to stock my pantry with essentials (and not so essentials...like the $4 Portuguese white wine....). So I will probably go tomorrow.

IV.

Since it is a long weekend *huzzah!* It is also baking weekend. I bought currants at the North Market last week to use in Irish Soda Bread. I haven't made it yet. That project is for tonight or tomorrow, depending on how the spirit moves me. One of the great things about winter is, as long as your pantry's stocked, you have all this time to cook and bake. Fantastic.

V.

I have an appt. with Dr. A on Monday. I'm going to ask if he's started planning my five year party yet. Really--five years? Wow.

VI.

Books of 2010 update: Laine's Real Adventures, Farmer Boy. I love Farmer Boy, but didn't have a copy at my place. If you want to feel hungry, read it. And if you want to feel warm, read it! The first chapter talks about it being forty below. Forty. Below. How did these folks get anything done? At -40, I think it's time to hibernate. But I suppose the cows won't wait for it to warm up for their milking...

Another: Elizabeth Berg's Never Change. I really enjoyed the character of Myra, but was sort of shocked by the ending.

And: The Good Husband of Zebra Drive, and Blue Shoes and Happiness. I'm sort of re-working my way through Alexander McCall Smith.

VII.

Bit on books and movies, to round up here. I started watching Bleak House last night--I got it for Christmas (The Gillian Anderson version), and my parents watched it first (because my dad loves Gillian Anderson. Old X-Files hold over.) So I just started it last night whilst I was painting my nails. It's really great so far. I haven't finished the book yet, so maybe watching the series will motivate me to finish it.

Another book I'm looking forward to reading: Melanie Benjamin's Alice I Have Been. I just picked it up and the beginning is fantastic.

And gosh, I owe you guys some real bookshelves. This weekend. I promise. I want to do one for La's Orchestra Saves the World, and for Alice, once it's done.

Be sure to visit Jen for more Quick Takes! 

Death and Taxes

I don’t normally watch the evening news. I’m around news all day, I read news websites, and by 6:30 I can probably give you a detailed summary of all the major events of the day with my eyes closed.


But, I was watching CBS evening news the other night (I was waiting for Jeopardy!), and there was a segment on obesity. The normal ideas were trotted out: more gym classes, taxes on “junk food”, all healthy foods in the cafeteria, etc.


I have several problems with this, not just because I like my Diet Coke, but because I needed that “junk” food when I was in high school. I needed as many calories as I could stuff into my body, because CF patients are extremely malnourished. Sure, we can wear a 00, but we can also look like African refugees. Not a good look. Coke machines, and the candy sold in the school store, helped my weight more than any apple or orange would have. The emphasis wasn’t so much on health food as food that will make me bigger.


Now I realize that CF kids are in the minority. But what about diabetics, who drink Diet Coke instead of juice? Most juices are packed with sugar. I don’t drink juice anymore unless I absolutely have to—as in, it’s the only choice at a hotel breakfast buffet. I’d much rather have coffee, milk, tea, or diet soda. Fruits send blood sugar levels sky-high. So what’s often considered “junk food” can be necessary food for a lot of people.


So, I think increasing these taxes, or banning these foods in schools, is an awful idea for a lot of the population. If you don’t want your kids to eat it, don’t give them pocket money. If they have pocket money in high school, from a job or whatever, they can make their own decisions. If theychoose junk food, that’s their choice. It doesn’t affect anyone but them.


The CBS story also likened taxing junk food to taxing cigarettes. Of course, the big difference is that cigarette smoke harms other people directly. I love taxes on cigarettes. My favorite cigarette tax story is from Cleveland—there, they use the money to fund arts programs. (We’ll forget about the fact that a lot of artists—including, lamentably, singers—smoke. At least they’re funding their own jobs.) But if you decide to eat a Big Mac every day for the rest of your life, that doesn’t directly affect me.


The argument can be made that it will affect me, indirectly, in rising health care costs. But everything we do can, indirectly, affect others. For example, I don’t think there should be seatbelt laws requiring adults to wear seatbelts. If you’re 18 or 25 or 62, and you decide that you don’t want to wear one, you can face the consequences of those actions. But that’s your choice. Part of living in a free society is the ability to make these choices.


My friend Richelle wrote a post about a Senate proposal that would tax indoor tanning. Now, while I think that indoor tanning—really, any tanning where the purpose is to turn yourself the color of a rotisserie chicken—is ridiculous (because, yeah, we need more cancer-causing agents in our lives), especially in Ohio in February, I don’t think the tax would serve as a deterrent. As my friend Candi noted, tanning is relatively cheap—packages can be bought for around $20. A 10% tax on $20 isn’t a very large deterrent. And, again, it’s a personal choice—one that I happen to think is inane, but hey, if you want skin cancer, that’s your call.


I draw the line here—things like cigarettes, that affect other people, should be taxed, banned, whatever. If you want to smoke at home, or in a smoking room (a la Titanic, or a British men’s club), sure, go ahead. But I (especially I) do not need, or want, to breathe in your toxic smoke. Sorry. So government can tax the hell out of it.


Tanning, junk food, etc.: These are personal choices. They do not affect me or other people. You are not clogging my arteries by eating those pounds of Doritos. And, like I stated above, some people need high-calorie, high-fat foods. Some people need diet drinks. I know of no people who need cigarettes for better health.




(NOTE: I’m tacking this one at the end in case I get some readers who aren’t regulars. Abortion is not a personal choice. You are directly killing another human being. Case closed.)

Saving Lives

AS you may expect, I have the utmost respect for doctors, nurses, and all of those in the medical profession. What they do, day in and day out, is save lives. It's not easy, and they're not perfect, but I am here because of some fantastic medical and mental work.

That's not to say that doctors are perfect. I've met some that are complete...well, fill in the blank. They're people, not God. Some are fantastic, some are average, and some have the bedside manner of a cobra. I'm able to overlook personality issues if the doctor is fantastic at what s/he does. (Fortunately, 99% of my doctors are lovely people.) When my life is on the line, these are the people I trust to do what they have to do to keep me here.

And, again, that doesn't mean there haven't been mistakes. There's the burn on my right arm, which required the skin graft. It was a mistake. But you know, doctors are human. They make mistakes. And, in the long run, it doesn't affect me in any way but cosmetically (and who cares?). They saved my life. Rather be alive with one scarred arm than dead with two perfect ones.

Why am I talking about all this? Because this story in my hometown paper really makes me angry. This young man had a disease that is rare, and that could have killed him. The doctors at OSU saved his life. Yes, his legs are amputated. Yes, his life is vastly different now. But he is alive. And for that, his family is suing 15 doctors and 2 hospitals? It infuriates me.

We could've sued, too, after my parents discovered what happened to my arm. And yes, for awhile, it was touch and go as to whether I'd still have it (thankfully I was in a blissful, epidural-induced euphoria and didn't know about that part until it was well over). In that great phrase, "S*&t happens." Yeah, it does. But I'm still alive. And so is he.

The last 10 years...

 I think the last decade of my life may have been the most eventful ever. I mean, short of getting married and having kids, I can’t imagine doing more in 10 years than this.
So here’s a round-up:

• Graduated from high school (2000)
• Graduated from college (2004)
• The transplant (duh!) (2005)
• 1 ICU stint (hopefully the first and last)
• Travel! Florida (2000), D.C., NYC (including New Year’s Eve in 2003), Chicago (2006), Duck, N.C. (2008), Houston/Galveston (2009), Rochester, NY; Wilkes-Barre, PA (King’s College debate tournament), Cleveland, Cincinnati, Wheeling (Oglebay resort), Muncie, IN (Ball State debate tournament), Michigan…
• Worked on the 2000 and 2004 Presidential campaigns
• My brother graduated from high school and college (OSU), my sister graduated from high school and started at Capital
• Theater!
• Reviewed in the Dispatch twice: Verdi Requiem in April of ’01, and Parade (see sidebar for that one)
• Got my first acting paycheck
• All-State Choir, Cleveland 2000
• Sang the Christmas section of Messiah, as well as “Worthy Is the Lamb” and “Hallelujah!”
• Christmas Festival singing at Cap
• Initiated into Sigma Alpha Iota (and was a founding member of the chapter at Capital)
• First serious relationship (college)
• Engaged (for awhile…)
• Moved out of my parents’ house
• Got my first car (1995 Honda Civic EX)
• My first real job—Swim Club concession stand in 2001.
• First real real job—LSC intern, fall of 2004
• Port put in
• The Bionic Ear appears (May 2006)
• My first Coach bag. J (Hey, had to include that)
• Got on the Mac Wagon
• Grandma and Pa celebrated their 50^th wedding anniversary
• Mom and Dad celebrated their 30^th wedding anniversary
• Baghdad fell on my 21^st birthday
• 9/11
• Solo trip to Pittsburgh with Mel
• Accepted to Franciscan University’s MA Theology program
• Joined St. Patrick
• Started this blog! (2006 and counting…)
• Got my driver’s license (2000, after high school graduation. Mom made me wait.)
• Fell in love with Jane
• Read many, many, many books
• Saw Phantom on Broadway (and thus fulfilled a lifelong dream)
• More theater? A smattering: Les Miz, Beauty and the Beast, Avenue Q, The Producers, Spamalot, Wicked (Columbus and Chicago), The Light in the Piazza, Chicago, The Lion King, Into the Woods, Street Scene, Macbeth, Rosencrantz and Guildenstern Are Dead, Master Class, 12 Angry Men
• Heard Itzhak Perlman play Beethoven’s Violin Concerto with the Columbus Symphony. Brilliant.
• Lots, lots, lots of ballet. Samples: Jewels, Dracula, The Great Gatsby, Aladdin, Nutcracker, Stars and Stripes, Night moves, 30x30, Swan Lake, Romeo and Juliet
• I actually learned to like opera!
• Saw La traviata, La boheme (Opera Columbus) and began collecting Renee Fleming CDs.
• Worked with the Secret Service
• Toured the White House
• Went to the top of the Empire State Building
• Heard Mass in St. Patrick’s Cathedral
• Went shopping on the Miracle Mile
• Rode the NYC subway (one word: Ugh)
• Visited Ellis Island and found my great-grandfather!
• Attended my first black tie dinner

Seven Quick Takes Friday Vol. XIX--The New Year's Edition

I.

Happy 2010 everyone! I hope you have a blessed year full of love and fun with family and friends.

II.

New Year's has never been a big holiday for me or my family. I had a boyfriend in college who loved it. It might have been his favorite holiday. Me? Not so much.

III.

That being said, I have been to NYC on New Year's Eve, which is the pinnacle of NYE activities in the U.S. It was crazy, but fun, and I'm glad I did it. It was during my senior year of college, where seven of us crammed into an NYC hotel room for two nights. That was really my first time in the city for longer than one night (I had been, once, in high school, to visit my Aunt who lived there), and it was magical. Cold, but magical. Since it was 2003, the rebuilding of ground zero had not yet begun, so my friends and I went to see the site on New Year's Day of 2004. It was a solemn way to begin the new year, but also appropriate that we went and remembered that day and the brave men and women who died.

IV.

I don't usually make new year's resolutions, either; I'm never able to keep them, and, when I did make them, they were usually something like, "stop biting my nails." Which, as anyone who knows me knows, hasn't happened in the 20+ years I've been making that resolution.  That doesn't mean I don't believe in self-improvement; I've just never been good at New Year's resolutions.

V.

That said--I do have some ideas this year. Pay off the rest of my credit cards, finish my MA pre-reqs (or at least 4 of the 6, if I don't get to all 6), and get in shape. My best friend is getting married in August, so that's definite motivation to look my best at the wedding. I have eight months and change to do something about it, so I intend to.

VI.

And there are some big things to look forward to this year, namely, my five year anniversary.

Five years! Can you believe it? I sure can't. In July, we will hit that milestone.  FIVE YEARS! (can you tell I'm super excited?)

VII.

My Christmas vacation ends on Monday, but I still have THREE MORE DAYS. It's been a great Christmas season. Enjoy the rest of it while you can!

I want to get a double lung transplant asap *--43 things note

Note: This is an entry I wrote for the "43 Things" site, where people list goals they have for life, the upcoming year, etc. This is someone's goal for this year, and I wrote about my experience. 


"The best experience of my life. "

How I did it: I was listed for a double lung transplant in May of 2005 after an evaluation at Nationwide Children's Hospital the previous March. I was twenty-three years old. I received my transplant on July 11, 2005.

How I did it isn't really relevant for transplant--you get listed, and you wait!

Lessons & tips: Be patient. It's so hard...I am the most impatient person in history. But you'll drive yourself crazy waiting for the phone to ring. Try to live as best you can without over thinking things. The call will come when it comes, and you can't hurry that.

A good support system is crucial--friends, family, etc. You need to be able to discuss important things and you need people that will help you pre and post surgery with the medical and PT regiments.

Resources: I had a great transplant coordinator, and good friends and family support, so I was able to talk to a lot of people.

It took me 40 days.

It made me SOOO happy!

See more progress on: I want to get a double lung transplant asap

Biopsy results

OK here's the news from the biopsy:
The samples were benign, so YAY, nothing huge to worry about, like cancer.
Julie wants a thyroid panel blood draw, so I am going tomorrow after work to the Children's Lab, where this will be drawn. This will give us more information about what the Crazy Gland is up to.
Dr. W, my ENT, also wants a thyroid ultrasound every six months, for monitoring purposes. This is A-OK, because the ultrasounds are 1) easy and 2) the waiting room has good magazines.
So, all in all, not bad. Let's keep it that way.

Updates

Or, rather, no updates...
When I had the biopsy last week, the initial thought was that the bumps/lumps/whatever they weres were just cysts and benign ones at that.
I have not received any updated pathology information. Just wanted y'all to know so you weren't wondering. :)

Biopsy 101

So, today was thyroid biopsy day (oh, rejoice!).
Mom arrived at the apartment around 8:25, and we reached children's around 9:00. My appointment was at 9:30.
Of course, once we got there I found out there were other tests I had to do--namely, an ultrasound of the gland. So we trooped down to ultrasound (where the receptionist must be a ventriloquist in another life, because she hardly moved her lips), where I changed into a gown, got scanned, and then sent back to intervention.
Mom had gone to the bathroom and I was sitting there, watching another episode of Dora the Explorer (involving sticky tape that solves All Problems), when one of the nurses came out.
"Hey, did you stop in the lab and get a pregnancy test?"
I rolled my eyes and shook my head. No, I had not. "I just went to my OB/GYN," I said. "There's no chance I'm pregnant."
The nurse nodded. "I know. But we have to check all girls over 12." She slipped me a script for the test, and I went to the other side of the hospital to go pee in a cup. It took longer to get my name called in the lab than to actually do the test. So I did it, dropped it off, and headed back to intervention.
I dropped my purse and coat on the chair next to mom, who was back. "Where did you go?" She asked, after I told the receptionist that I was back (again).
"Pregnancy test."
"Oh, please."
So finally, I was called back to the prep room. My mom was hanging out in the lobby while the nurse took my history (including fun questions like "How much did I weigh when I was born?") , took my vitals, and assembled materials for port access.
As she was taking my blood pressure, I asked exactly what was going to happen.

Tomorrow

Sorry I've been a bit AWOL, so here's your update:
my biopsy is tomorrow in Children's Interventional Radiology Department. According to Dr. A's office, I could get results as quickly as late Friday afternoon, or not until Monday or Tuesday. So I either know and am relaxed/ frantic all weekend, or I don't know and get to be....relaxed/frantic all weekend.
It helps that Swan Lake is on Friday night--an excellent distraction.
Anyway, the biopsy's at 9:30 tomorrow, I'm  NPO after midnight, and...that's about it, update wise.
I'll have a wrap-up tomorrow.

New adventure

Sorry for the AWOL-ness this week--things have been...unsettled.
I missed my alarm TWICE this week, making me super-late for work. So on Thursday morning, when I actually got up at the appropriate time, I thought, today has to be better than the last two days. 
Eh...not so much.
If you've been reading this blog for the past month or so, you know my body's been doing it's "I hate you" dance, which drives me up a wall, especially when there seems to be no reason for this activity.
There might be a reason, after all. Found totally accidentially, during this ER run-in.
(read that, if you haven't, then come back, or the rest of this won't make sense. I'll wait.)

Tales of the ER, Part II

So "ask me about my day," will ya?
The day started out normally, nay, well. I had on a good outfit, the drive in was fine, the papers were moderately full of stories. I was motivated to work and get things done.
This all came to a screeching halt around 9:00.
As I was clipping the Dayton DAily News, I started to fell...odd. Massive amounts of sudden-onset chest pain, along with shortness of breath.
Now, I had a doctor's appointment yesterday, and we thought I might have a virus. But I had never felt this way before, and I didn't think viruses did things like that.
I tried to take a few deep breaths and calm myself. Getting upset would only make whatever this was worse. So I continued cutting, continued deep breathing, drank some water.
Stabbing pain invaded my chest.
I finished Dayton, moved onto Cincinnati. Still pain. Deep breathing getting a bit difficult now.
As I was working on Cleveland, I knew this wasn't something I could just write off. I had never felt this way before, and I knew that shortness of breath + chest pain was not a recipe for good things. So I went up to my boss's office and told her I was going to the ER to get checked out.
She shooed me out the door and I drove to The Resort.