The Saga of Health Care #1

I can tell this is going to be a semi-regular feature here in the bucket, so I'm going to kick it off with a few posts right off the beat. Some of these will be rebuttals (as this one is), some will be informative, and some will be ranting. :) So without further ado, installment 1 in the SOHC series: (this I got fro Lieft of the Dial. My comments in bold, and emphases

Laboratories of Failure

Another fine column pointing out the absurdity not only of our current health care system but the flaws in one of the most common arguments in favor of keeping it.

This is a consistent theme among opponents of universal care. They act like universal care is some crazy utopian fantasy like communism that has no realistic prospect of working and has failed miserably whenever tried. They never acknowledge the fact we are the outliers, that every other first world country has long since moved to a system of universal care and that there are now a multitude of different, fully-functioning systems out there for us to choose from. In other words, we're well past the experimental stage. It's like mocking someone's idea for a "flying machine" in, say, 1954 ("when that contraption crashes it will prove to the world that man was never meant to fly!").

I thought this comment also explained quite nicely one of the reasons we haven't made any serious progress on this issue, despite the majority of Americans haing the current system:

Under a socialist health care system, the government hires all the doctors, nurses and other health professionals. The government owns and runs all the clinics, hospitals, ambulance services — the whole enchilada.

Anyone who thinks that system is absolutely no good better be prepared to explain why presidents, Cabinet members, 535 members of Congress and the whole sprawling U.S. military find it overall satisfactory or better. Because that's exactly the health care system those Americans have.

In other words, the politicians already have the best system in the world. So they have no pressing need to fix ours.

Because, after all, they got theirs. Screw everyone else.

Although that's not even the system folks are really clamoring for.

What folks on the left want is a single-payer, universal health insurance system, with the federal government doing the honors. So, consumers get the coverage they need at a price they can afford for care from whomever they choose to get care from.

Businesses get relieved of the burden of co-funding expensive insurance plans. They also will be relieved of the temptation to push 59-year-old Marge, who's already had a lumpectomy, into an early and meager retirement because she (and other less than completely healthy older workers) will run up the premiums for the whole company if they're kept on the payroll.

Well. That does sound radical.

EMD: Well, as usual, this is posted without any sort of reasoning, data, etc., except perpetuating the whole fantasty that if we had single-payer health care, life would just mbe this magical fantasy land where everyone had magic health care and we'd just all be the healthiest people ever.
In the next post I'm going to regale you with ACTUAL facts about how this supposedly great system works in these counties and what is actually means.

"Survival" rates

I was reading a story on MSNBC today that talked to a CF patient, woman, in her 30s, who was trying "unconventional" treatments for her disease--she doesn't take antibiotics, doesn't do normal aerosols (she does some sort of non-drug thing, I don't know). Anyway, her brother had CF and he had a transplant, and is now doing really well.
But anyway, the article mentioned that it was easy to see why the woman didn't want a transplant since the "survival rate is only 50% after 5 years."
OK, let's get real for a minute. First off, most people, w/o the transplant, aren't looking at years. They are looking at months, weeks, days. Years are an ephemeral concept. The transplant will give you a year, at least, hopefully. The transplant survival curve is a lot like the CF survival curve--it keeps growing. Five years is alot better than you would've had pre-transplant. I hate it when people put things like this in terms of calendar time. You don't gauge life like that. Look at what can happen in a year, two, five...and 50% is just the average. You can live longer. People are so afraid of statistics. They see five years or 10 years and they think, whoa, I'll only be like 33, or 28, or whatever. I mean what about all the stuff I want to do?
Hard truth--you might not be around for them w/o the transplant. And really, do any of us know what we'll be around for? None of us know that.
"Life is not made up of days, but of moments."
Get out there and get some. And stop worrying about stupid statistics and averages.

CF/TX books

I just received two new books from Amazon today, one called "Breathing for a Living" and the other, "A Little Love Story." The first is a memoir of Laura, a girl who had CF and received a double lung tx in July of 2001. Unfortunately she had a lot of complications and died in 2003. The second is a novel about a man who dates a woman with CF (who also happens to work for the Governor of Massachusetts...yeah I am really liking this one so far. :)). I will let you know what I think once I've finished them, but the novel is really good so far, and some of the proceeds go to the CF foundation. So if you're a reader, you *may* (wink) be getting this book from me for Christmas. Ha.

This could be...

The. Best. Quote. Ever.

"Emily invited us to her apartment. It was like Catholic Disneyland." --Mike B., at today's Parish Council retreat

Wacky

Well, it's me we're talking about, so I guess that's not unexpected... :)
I went for a "follow-up" at The Resort today to see what was going on after last week's little visit. Apparently, I'm just weird, because my PFTs were better than they've ever been (62%, up from the last high of 60% in June), DLCO was fine, NiOx was fine (still a wee bit high for me, but oh well) and the three "box" tests we ran were fine. So I don't know. :) And I lost weight so I guess the lasix is working. Yay!

But I got to see Dr. M, which I never get to do anymore, so that was great. After a lot of years going to her when I looked/felt like crap it's nice for her to see me when my PFTs are 62%, as opposed to 28%. Wow. When you look at those numbers it's kind of amazing, eh? Of course, I'm sure she also enjoys knowing that I no longer weigh 90 pounds. :) (She's probably the only one--ha!)

GRRR--From the Corner

We've discussed this here before, but this is just RIDICULOUS...

A manny is the cute new term for a male nanny. Mannies are newly popular among the well-staffed set in New York, Greenwich, Ct and similar locales. The idea is that your kids— sons especially — get a little more sports and rough-housing with the babysitting and less of the mollycoddling and all female environments too common in homes where dad works till all hours.

I was wondering if we should call the government of Michael Bloomberg, here in NYC, a "manny state" instead of the clichéd "nanny state." But, considering his latest initiative, the answer must be no. In fact, we are regressing to the "baby nurse" state. Having banned smoking and transfats from restaurants, the mayor is now focused on the eating habits of those too young to patronize the city's eateries. Specifically, as of yesterday, the mayor has begun a major push to get new mothers to breast feed their infants. Apparently only a quarter of NYC moms choose to do so at the moment, and he wants to triple that number in a few years. He is starting by having city-owned hospitals deny new mothers formula.

Let's stipulate that breastfeeding is healthier, more nutritious and cheaper than formula feeding; it may even have a marginal positive effect on IQ. (Nursing does require time and knowledge not universally available to execute properly— which is why it is largely the preference of better-educated women.) Just as forgoing transfats and smoking are objectively healthier choices — and yet is not the state's responsibility to make.

Still, this is a new, shocking level of intrusiveness into what should be an entirely personal decision. In fact, this is far more egregious than either of the previous policies — which apply to what are already regulated commercial establishments. How to feed one's own infant is about as intimate and personal a decision as families make.

So why is he doing it? Is it meant to compensate for his failure to pass his traffic congestion-pricing plan? Or his failure to make significant improvements in educating the city's public school children? Is this meant to give him a competitive advantage in his hinted-at presidential campaign? Is the never before heard of "breastfeeding issue" an instance where both the GOP and the Democratic party have failed to address a critical social problem, and the unique Bloomberg approach is required? Is it a midsummer joke? A parody of a conservative take on ultra-liberal, statist politics? Is he trying to out-feminine Hillary and John Edwards? Is it to take attention away from the New York Times revelation that his vaunted subway rides to work begin with a chauffeured SUV trip to an express stop?

What about those of us that CANNOT breastfeed? Huh? What are we supposed to do, Mayor Bloomberg? I guess the answer is move out of NYC--pronto.

Nutty stuff

So I went in to "the Resort" for a visit on Friday--my ankles and hands had been swelling up lately, and I'd gained like 7 pounds for no explainable reason, so I thought (with some maternal prodding) I'd call and let them know what was going on.
We did PFTs, NIox, Diffusion levels, labs, all that good stuff. Everything looks OK, so we're on lasix (a diuretic) for a bit, to reduce the swelling and hopefully get rid of the extra weight that has magically appeared. We'll see...

1,000 hits!

Wow, thanks guys. :)
Nice to know someone other than my parents read this!!

Cooking with the kiddos

Last night I had the Rugrats (aka, the kids I baby-sit for :)) over for a few hours, in which we watched Matilda, played Scene It? (Jack's sports version....not so much for me ), had dinner and I taught the kids how to make chocolate chip cookies.
This was a lot of fun, actually. I had them read the recipe and tell me how much of each ingredient we needed. I taught them the difference between measuring white and brown sugar, and Helen learned how to crack and egg and beat it, which made Jack happy because now Helen can "make him scrambled eggs," as he gleefully informed their dad when he came to pick them up. They watched me mix the ingredients and helped shape the cookies. We made a bunch of trays, so they got to take quite a few home, and I hope they didn't eat them all in one sitting! I also got to teach them the difference between baking powder and baking soda, and show them what real vanilla beans look like (they were pretty amazed that it came from the orchid plant). I love cooking, as we know, and it was alot of fun to be able to teach some basic things to them, since I was about Helen's age (12) when I began to really start baking; I'd been making spaghetti since i was eight!

The cookies we made, by the way, are the best chocolate chip cookies ever. They bake wonderfully, freeze wonderfully (GREAT at Christmastime) and a really easy. I know you probably want a recipe. But I don't know if I'm will to share my secrets.

I also made them cornbread for dinner, following Danielle Bean's super-easy, and super-good, cornbread recipe, which you can find here.

Bookshelf time!

It's been awhile since we've had a book update, so for those of you who care: (all two of you...ha!)

--I am almost done with the Great Jane Re-Read; I just have to finish Sandition, which will probably happen today. I loved Lady Susan and the Watsons. I may start her juvenalia, which I've never finished, but we'll see. I also want to read her nephew's biography, A Memoir of Jane Austen, which, again, I have but have never read. :)

--Still reading Ovid's Metamorphoses, but that takes a lot of time and concentration so I'm not reading that as often.

--Picked up FS Fitzgerald's This Side of Paradise at the Book Loft last week, so that should be good. :)

--Just finished Ann Pachett's Truth and Beauty, which is a memoir of her friendship with the author/poet Lucy Grealy. Very good, and it makes me want to read the rest of her novels; so far I've only read Bel Canto, which was fantastic, about a group of Souther American terrorists who take over a birthday party for a Japanese business executive, at which a world-famous Soprano happens to be singing (yeah, I enjoyed the soprano part...lots of opera talk!).

--Still reading W&P. This might turn into the Great Fall Russian Novel Project at this rate.

--Also still reading B XVI's book--I plan to make more progress on that today...You know, in between cleaning bouts...ha.

A little old but--mice helping the Lung tx cause

First lung transplants in mice lay groundwork for new drugs to prevent transplant rejection in humans

By Caroline Arbanas


July 11, 2007 -- Lung transplants have been performed successfully for more than 20 years in humans but never before in mice - until now. Surgeons at Washington University School of Medicine in St. Louis have developed the first mouse model of lung transplantation, and they're hoping it will help explain why the success of the procedure in humans lags far behind other solid organ transplants.



Several School of Medicine researchers discuss the importance of an accurate mouse model for studying lung disease in humans.
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Ultimately, the mouse model could pave the way for developing new therapies to prevent lung transplant rejection - a major problem that limits the long-term success of the procedure. The mouse model is described in the June issue of the American Journal of Transplantation.

Five years after lung transplant surgery, only about 45 percent of patients are still alive, according to the U.S. Organ and Procurement and Transplantation Network. This compares with five-year survival rates of about 70 percent for heart and liver transplants and about 80 percent for kidney transplants. About 1,000 lung transplants are performed each year in the United States.

"The high failure rate of lung transplants is a huge problem," says lung transplant surgeon Daniel Kreisel, M.D., Ph.D., an assistant professor of surgery and a lead investigator of the research. "Unlike other organs, lungs are constantly exposed to bacteria and viruses in the environment, and we think this exposure increases the risk of chronic rejection and the eventual failure of the organ. This is why the mouse model is so critical. It will allow us to understand the molecular mechanisms that control lung transplant rejection."

Lung transplants are the only treatment option for end-stage lung disease, including chronic obstructive pulmonary disease (COPD), cystic fibrosis, pulmonary fibrosis and certain congenital lung defects. Following a transplant, patients must take drugs for the rest of their lives that suppress the immune system and prevent it from attacking the new lung. This leaves them vulnerable to upper respiratory infections, which can quickly develop into pneumonia.

Kreisel and others suspect that these illnesses alter the immune response and increase inflammation, which eventually lead to chronic rejection. They note that mainstay immunosuppressive drugs simply are not effective at preventing chronic rejection for lung transplants, and they hope the mouse model will reveal why.

"The current hypothesis is that lung transplant rejection is linked to chronic inflammation from transient viral or bacterial infections, and this can be aggravated by the fact that transplant recipients are taking immunosuppressive drugs," Kreisel says.

Mouse models for heart, liver and kidney transplants have existed for years, but developing a similar model for lung transplantation has proved to be a real technical challenge. Mouse lungs measure less than an inch in length and the pulmonary vein and artery, which carry blood to and from the heart, are as thin as human hair.

Mikio Okazaki, M.D., a postdoctoral fellow, adapted the lung transplantation technique used in rats to the mice. He uses synthetic cuffs to join the donor vessels with those of the recipient. Okazaki has successfully performed several hundred lung transplants in the mice, and the team's analysis indicates the model simulates the same immune response that occurs in humans following lung transplantation.

Before Okazaki and his Washington University colleagues developed the mouse model, researchers had been studying lung transplantation using a nonphysiological mouse model in which a small section of trachea from one mouse was transplanted under the skin of another. Although it was simple to create, the model did not accurately mimic lung transplantation. "It was a very artificial model that had little to do with reality, Okazaki says. "We think the new model will be far better for studying the underlying immune mechanisms that lead to rejection."

The new mouse lung transplant model has an advantage over those in rats and larger animals because the genetics of mice are well documented and their genes are easier to manipulate. "With the mice, we can selectively delete genes to study their function in the transplanted lung or in the recipient, which we've not been able to do effectively in other animal models," says Andrew Gelman, Ph.D., an assistant professor of surgery, who is a lead investigator of this research. "By understanding the genes that control lung graft survival, researchers will be able to better guide the development of therapies to counteract chronic rejection."

The mouse model also will allow the researchers to investigate how other transplant-related complications affect the long-term success of the procedure. Many lung transplant patients experience gastric reflux, and doctors suspect this acid exposure damages the lining of the lung and further exposes the organ to pathogens. The mouse model will let researchers evaluate whether gastric reflux increases the risk of lung rejection.

Additionally, the time between surgery to harvest a donor lung and transplant it into a patient is widely suspected to affect its overall function after transplant surgery. The mouse model will help pinpoint the inflammation that underlies damage to the organ when it can't be transplanted quickly and may lead to ways to prevent such injury.

Based on mouse models of other solid organ transplants, researchers have learned that different groups of immune cells contribute to rejection in different organs. "Rejection of the lung differs from rejection of the heart in terms of the cells that participate in that rejection," says Alexander Sasha Krupnick, M.D., assistant professor of surgery. "Every organ is different. What we've learned about rejection of the heart in mice does not apply to lungs. So we are thrilled to finally have an acceptable mouse model of lung transplantation to help us discover ways to increase the success of these transplants in humans."



--------------------------------------------------------------------------------


Okazaki M, Krupnick AS, Kornfeld CG, Lai JM, Ritter JH, Richardson SB, Huang HJ, Das NA, Patterson GA, Gelman AE, Kreisel, D. A mouse model of orthotopic vascularized aerated lung transplantation. American Journal of Transplantation. June 2007.

Grants from the National Heart, Lung and Blood Institute, the Thoracic Surgery Foundation for Research and Education, and Roche Pharmaceuticals supported this research.

Washington University School of Medicine's full-time and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children's hospitals. The School of Medicine is one of the leading medical research, teaching and patient care institutions in the nation, currently ranked fourth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children's hospitals, the School of Medicine is linked to BJC HealthCare.

In memory

One of the Children's transplant patients died yesterday, which makes everyone involved in the program sad, especially since we're a tight-knit group (there aren't too many of us, yet...and those of us who were transplanted earlier [like this one] tend to know each other fairly well since we were the founding patients, so to speak). Any time I hear of a transplant patient's death, especially one of the Children's kids, I am reminded of how truly fleeting life is for all of us and how grateful I am for my transplant. We need to be grateful for every day, every moment that we get, because you never know when it's going to be it. Rejection, for us, can happen any time, and sometimes there aren't even any symptoms. In this case, the little boy was sick for a few months, but he seemed to be getting better. His mom had just talked to my mom the other day about the possibility of baby-sitting for them sometime.

It has been a sobering day for all of us. Prayers and good thoughts would be especially appreciated. He had a great family who loved him so much, and they are wonderful people. His short life was totally filled with love.

Harry Potter!

For my thoughts and impressions, go
href="http://blog.360.yahoo.com/blog-7cXuer40dqJGKMQySK8HqA--?cq=1&p=503"here

In a word? AWESOME!!!!

Unbelievable!

Poor Jane!

href="http://books.guardian.co.uk/news/articles/0,,2129738,00.html">

I'm still here :)

I'm still here, no worries, life has just been crazy lately!
Saw the new Harry Potter over the weekend (popcorn coming!), then yesterday I was reading, reading, more reading, and today I had my fitting for my bridesmaid's dress for Di's wedding, dinner at home and baby-sitting the affectionately called "Rugrats," which involved Scattegories, power point and the Reds game. Whew.

Anyway, on Thursday I go to The Resort for my two year tests...woohoo! This involves a bone density scan, the 6 minute walk, a VQ scan (basically some sort of scan that looks at gas diffusion in my lungs), and a visit with Dr. Hardin in the endo clinic. Oh the joy that will be mine! :) But then I'm good until September...amazing!

Things going well over here, still in the job hunt (just looking around, anyway). Going on three years now. :)

Hmmmm....

What Emily Means

E is for Edgy M is for Magical I is for Influential L is for Lucky Y is for Young

What Does Your Name Mean?

Well I agree with "lucky," especially given today's date!!!
I hope "M' and "I" are true. And I guess 25 is still young.
I am only edgy occasionally. :)

The Anniversary

At 8:45 this evening, it will be two years since we got "The Call" (check the archives--July last year--for more on this). And I can remember it like it happened two minutes ago.

I was so tired. I was actually trying to think of a better excuse than "I'm exhausted" to leave on my boss's voice mail. It was Sunday night and I was taking my pills, sitting on the old indigo couch in our family room. Mom was on the love seat and Dad was sitting against that, watching TV. Bryan and Mel were hanging out--they were on summer vacation. I had about three more pills to take. Mom and Dad had almost dragged me up to Easton that day, where I'd bought a new Coach bag (the only thing good, thus far, about that day) and I'd had a fish sandwich at Fado. Well, I'd tried to have a fish sandwich. I don't remember how well that went but probably not very. Dad had to drop us off and pick us up at every store, because I couldn't walk around the complex. In fact I didn't even really want to be there. But I was.

So it was Sunday night--"the beginning of another week," as they say on Pollyanna. My cell phone was, as usual, sitting on the end table by the remaining pills, mocking me. Not ringing. As usual.

So here I was, considering which pill to take next, and the phone rang.
I had caller ID on my cell, so when I saw Karen's name, I tried to keep my face neutral. But I knew what it was. Even though we were friends, she wasn't going to call on Sunday night just to chat.

And It Was. I had new lungs waiting for me, somewhere in Minnesota. The new lease on life had come. A day like today, struggling through heat, forcing myself to put one foot in front of the other, wouldn't happen again. Well, it would (as we did rehab) but it wouldn't be because my body was disappearing.

It was a long night. We left for Children's around 1 a.m., all of us piled in mom's silver Civic (dad was driving). The sky was cloudless, the stars brilliant. I didn't say a word.

Bryan and Mel slept on the couches in 4AE's multi-purpose room. I slept. The nurses didn't quite know what to do with me. :) Mom and Dad and I listened as Karen and Dr. A came in with updates. Fr. Mark, thanks be to God, came.

At 7 I was taken down to pre-op with my parents. Then I don't remember anything else.

An amazing, incredible day. My gratitude is simply overwhelming. I saw an organ donor plate yesterday that read "THNK YOU". Two words are so inadequate to express what the Gift of Life really means. But it's all we have.

And I have had two years with my family and friends. I have traveled to new cities and seen new things. I've joined new organizations, met new people, seen new babies be born and new marriages take place. I've watched my cousins and my godson grow up. And, of course, I've been reading.

If you're not an organ donor, think about it. Become one. Check out some of the links in the side bar, especially Lifeline's. Because you can save someone's life, and she will thank you forever.

Anniversary party!

The Second Annual Emily's tx anniversary party is tonight, so I am taking a break between making Large Quantities of Food for Hungry People. :) We're going mostly Mediterranean (Greek, actually) since it's so hot, and I've got two cakes that I, personally, am just ready to devour.

Pictures up later.

I cannot believe we're coming on on two years. Amazing.

Popcorn: Ratatouille!

My favorite Pixar movie ever!!! Not even kidding.

Remy the rat wants to be a chef. But, um, he's a rat. So he takes to living a secret life, cooking and watching Chef Gusteau's TV show in a nerby house, until the crazy woman who owns the house discovers Remy and his brother, Emilie, and shoots out her house (literally, she owns a shotgun, it's pretty funny), causing all the rats to escape. Remy gets seperated from his family and is guided by the ghost of Chef Gusteau to the chef's former restaurant, conveniently name d(what else?) Gusteau's. There, Remy saves new hire Linguine's job by fixing a soup he had destroyed. Well the soup is a hit, and the new head chef, who is a bit wacky and not a fan of Linguine, tells him to re-create it. Which, of course, he can't--at least not without Remy. Nicknaming him "little chef," they manage to re-create it, and Linguine moves from garbage boy to chef, working along side the lovely Colette, with whom, of course, he falls in love. And Linguine ends up not being who we all think he is...

It is a great movie if you like cooking and food, which, as we know, I do. The food is incredible to look at. Pixar's animation is, of course, impeccable, and the fur! Oh my gosh. There were moments where I could've sworn I was looking at photographs.

You might think with rats as the subject, there might be a tendency to go for the low humor. Not so. The garbarge shots are limited, and there is no "potty humor" in this movie, thank God. I would actually say this is a movie geared more for adults and older kids. I think little kids will enjoy the gags (there is plenty of visual humor), but really, the plot is more adult, and the setting is certainly more adult (a Parisian French restaurant). While we do see the rats in the Parisian sewers, we don't spend a lot of time there.

The soundtrack is incredible; I need to get it. I absolutely loved it. The cinematography is also great, with the street shots of Paris being very realistic and well thought-out. I want to go to Paris immediately. I also want to cook a nice big tray of Ratatouille! If I find a good recipe I'll post it.

Gee, can you tell I loved this thing? It was just awesome.

Oh, and the CI was great too!

Of telephones and tune-ups

I had my second CI tune-up today (go back next Thursday for another), and today we mostly refined some of the programs and added another speech processor, called SPEAK. So I have two now--ACE (the original) and this one. Next week I'll decide which one I want to use for good. I also started using the telecoil, which is the CI's phone deciphering channel. If you call me on the phone, this is what I use to understand you. :) It can be set to a variety of ratios, so I can either hear only what's coming through the phone, or the phone in conjunction with other sounds (like sirens if I was on a cell phone, or whatever). Right now it's 75% phone and 25% other noise, which seems to work OK thus far, even if people's voices do sound a bit odd (like Greedo in Star Wars). But I can have an actual phone conversation--I've had two today!--which is pretty cool. I just have to turn to the telecoil program before I talk to you. So if you call me, it might take me a minute to answer while I adjust my head. :)
Hopefully I'll be out to see a movie tonight--I really want to see Ratatouille, and check out the CI in a theater!





Gee, think I want to see this one?

Tune-up 2

Is occuring tomorrow, when we set the "C-levels" (I forget what those are, at the moment), but it should be good times...continuing hearing improvement.
I could actually understand the homily yesterday!

Hearing :) :)

Great weekend spent w/ my family in Pittsburgh; it was my cousin Di's wedding shower yesterday, plus my grandma's 77th birthday AND my parents' 28th wedding anniversary. And I heard everybody! I was able to have actual conversations! Some of the kids took awhile to get used to, but overall it was great! I was very excited.
I was also excited to be able to hear the homily in Church. Woohoo!
I go back to see Beth and have the CI tuned some more on Tuesday, so everything is going well so far. I'm really happy with it.

"I can hear you now!"

I can even hear my own illustrious typing--huzzah!!
OK so we went to Dr. W's and first he checked the site to make sure everything was kosher...we were good to go. Beth says there's still a tiny bit of swelling but that's OK. Apparently roller coasters are kind of a no-go unless I take off the CI and secure it with someone else, but I think I can handle that (not all my friends are coaster riders). So anyway, I go back to see him in 3 months just to make sure everything is OK.

Then I saw Beth. First we checked all the electrodes (22) to make sure they worked, which they did (yay!). Then we did the first map which was threshold markers; basically soft and loud sounds. It's pretty crude, but whatever. So I had to indicate whenever I heard the random beeping in my ear. Now this can take a while to master, but eventually we got it done. Once we had this first map (which took awhile since there were 22 channels to check out), Beth activated the thing and let me try to understand speech with it. At first I heard Beth's voice and a lot of what sounded like radio static. Then her voice sort of merged with the static and I got this cartoony kind of thing, but it didn't really matter, because I knew what the heck she was saying. And I didn't have to slavishly follow her lips and guesstimate!! Huzzah! At first it's still sort of hard for me to understand you but the more you talk to me the more I get used to you. And everyone's voices sort of sound the same (Mickey/Minnie) in the beginning, until I get used to your sound. But the point is, even if it's sort of crude, I can freakin' hear you! Mom and I actually had like real conversation in the car on the way home which DID NOT happen before. Cars were actually the worst because I couldn't look at the person's lips and there was road noise to contend with. But I could hear all of her "father from a Christmas Story" comments on the other drivers. Not sure if that's a good thing or a bad thing (kidding mom). So anyway, keep talking to me so I can get used to you!
I went home and practiced the music which went really well. My singing is already a lot better even though sometimes I get static in my ear. But I can hear the pitches again and that rocks my world! I have choir pracgice tomorrow night so we'll see how it really goes. But Beth said it will just keep getting better b/c the brain is so adaptable. I know mine is.
Had a Parish Council meeting here tonight which was GREAT! I actually got everything! Well, almost everything. Not totally everything. But that's OK. So I am looking forward to work tomorrow to see what happens. I warned my boss that they might all sound liek Mickey. :) But who cares? This is awesome!
I really don't want to take it off. Is that weird???

CI...

activation later today. Yeah I'm excited. Hope the darn thing works. :)
Will keep you posted...

Continuing the happy streak...

Another good clinic yay me!
PFTs 60%--haven't been that high since like November of 2006! Yay! DLCO good, NIOX good (like 9.0, so that's good; that's the test that measures inflammation in the lungs), CT/CXR good. Dr. A said there's a tiny tiny polyp thing that showed up on the CT but he's not too worried about it; we'll just watch it.
Weight...ehhhh. Maybe if I can get Dr. A to adjust the prednisone it'll help, because we all know I'm doing the low-fat thing and even working out! So I'm blaming steroids!
Lunch with Amber was awesome, we went to Mongolian BBQ at Easton after her infusion clinic stint.
Tomorrow..CI activation!! Woohoo!

Another day in Paradise...

Yup I'll be at the resort tomorrow! Woohoo!
The normal--Blood, CXR BUT with a CT scan too (bonus!), PFTs/DLCO, and the visit with Dr. A and Julie. Let the fun begin...well, OK fund starts afterwards with Amber! Yay!!

Amazing

I just spent 45 minutes in the gym. Yes, that's right.
45 Minutes.
Without being told to do it.
I'm not quite sure what's possessed me....

Wicked pics

Me and Mel before we went to Wicked last Wednesday, which. Was. Awesome. I want to go again!

This week!

Busy week in the world of Emily's tx...

Monday, I have an appt. with Dr. A and Crew: labs, CXR, Chest CT (woohoo!), and the normal PFTs/DLCO fun stuff. Tiny possibility of bronch since my two year is approaching (!), but it probably won't happen. It better not, because Amber and I have post-appointment lunch plans!

Tuesday is CI activation day! First I see Dr. W at 1:15 and then Beth starts the CI stuff at 2:30, which takes about 2 hours. Hope all goes well!

To top all this off, I have Parish Council on Monday, Parish Council Retreat Meeting on Tuesday, Choir practice for our pastor's last Mass on Wednesday, Kathy at 4 on Thursday, and Di's Wedding Shower this weekend!! Eek!

Happy birthday, Mom!

From Dad's par-tay at Scali's

Happy Birthday Dad!

"Heartland" starts tonight...

10 PM on your TNT station...

The market and organ donation

I've posted a few things here before re: organ donation and ways people have come up with to reduce the shortage. Most of them involve paying people for their organs, or having organizations like Lifesavers, where only people who are organ donors them selves can receive organs.

One of the most recent articles I've read was in the Dispatch earlier this week. I'm going to have some of the author's comments here, and then my responses (he's in italic):

How did we arrive at this unfortunate situation? As is so often the case, our supposed servants in Washington are at fault. Would-be donors are not supplying as many kidneys as patients need because Congress has decreed that no one may sell their organs. Instead you can only give your organs away. Most people, including me, and almost certainly you, aren't willing to do that for anyone other than a family member or close friend. So people without arelative or friend who can give them a life-saving kidney are in trobuel. They have to take their chances on a very long waiting list, hoping the right person dies at the right time before the clock runs out.

First off, the main fallacy of this argument is that is it based SOLELY on kidney transplants. Now these are, along with bone marrow and some liver and RARELY some lung, able to be accomplished while the donor is alive (the liver regenerates). For heart and lung, obviously, you have to be dead. This is also true for corneas and a pancreas (I think). So selling your organs won't help because you'd basically be saying that you'd kill yourself. Now if you're not willing to go through an operation for someone else, I highly doubt you'd kill yourself.
Congress banned the selling of organs because there are some very, very desperate people who would probably consent to death in order to get money. Which brings up the question, who would pay for these organs? The author suggsts that it would be the patient. Who would determine the price? Oh, the "market."

Which is another issue. As my readers know, organ transplants aren't decided based on ability to pay. They are decided babsed on medical suitablilty, as well as a host of other factors. If you are not a good medical match, you don't get an organ. If you are not going to be compliant, you don't get the organ. If you have a history of noncompliance and an inability to BECOME compliant, then you don't get the organ. You don't even get listed. I saw lots of people in the CF clinic who were totally ineligible for transplant because they had screwed themselves up so completely, there was no way they'd be able to handle it.
Also, many centers have a high survival rate due to the fact that some centers are pickier than others about what organs they accept. Dr. A was always talking about getting me "optimal" organs, whcih drove me crazy at the time, but now I"m glad. How are we going to know how good thse organs are? The donor will have to submit to medical testing. This isn't cheap. So will he make the recipient pay? Or the insurance company? (Which they will be THRILLED about, let me tell you) And would the recipient have to pay before all these tests, or after? What if they just aren't
a good match?

The writer asserts that by legalizing the selling of organs
"they'd be no crisis like there is today." Um, wrong. Maybe not for kidneys, although the things I"ve written above raise serious doubt sin that quarter, but we would still have a vast number of people who are waiting for organs that cannot be obtained by living persons. But, again, the author is unable to see beyond kidney transplants.

If we were really serious about organ donation and decreasing the waiting list, we would make it easier to be a donor. If you are a donor on your license, that's your consent. We shouldn't need to have to get another approval from the family. We could ban smoking just about everywhere so there would be more lung and heart donors. We could ban alcohol use so that they're be more eligible liver donors. Now obviously I'm being a little facetious here. But using the market is not the way to go. There are too many questions, and it would totally upend the system. What aobut those who are NOT waiting for kidneys?

As for Lifesavers programs, those won't help either. It amazes me how so many of these groups don't even focus on the medical side of transplants. What if you die in a car accident and thuis are unable to donate organs due to extreme internal damage? Or you're no eligible to be an organ recipient due to some other factor? The whole "I'll do for you, you do for me" idea sounds good, but, like so many other things (social security, anyone?) it's a good in theory, bad in practice idea.

Sure, waiting for organs is no picnic. I know. But the way UNOS has it set up it is a fair system. Everyone, rich and poor, gets an equal shot. Insurance companies do a good job covering transplants, and it's getting better as they become more "mainstream" in medical treatment. To have people buying and selling organs like they buy Wendy's stock is not only impractical, but would have serious rammifciation for everyone involved in transplant--patients, hospitals, medical staff, OPAs, and others. And they would not be good.

Breakthrough!

I can sleep on my left side tonight! This excites me.
The fact that this excites me--does that make me 1) very boring , 2) very weird or 3) very appreciative of the little things in life? or a combination of all three?

Transplant TV!

Just read on the WaPo site that Treat Williams is starring in a new TNT drama series, "Heartland," about a transplant center in Pittsburgh. How cool is that? He plays (even more cool) a lung transplant surgeon. It's going to be on Mondays at 10. Not sure when it starts...check your papers. But I found this to be waaaaay cool.
If I don't currently get TNT I would upgrade my cable so I could watch this. :)

So much to do...

It's really amazing.

--Father's Day on Sunday--gotta get the gift. :)
--Dad's birthday on Tuesday--see above.
--WICKED on Wednesday! Woohoo!
--Mom's birthday on Friday--get the gift!
--Next Monday: Dr. A appt. and lunch w/ Amber!! And PC meeting
--Tuesday: CI ACTIVATION! And PC meeting, but here.
--Saturday: Diane's wedding shower in Pittsburgh--gotta get, um, the gift!

Whew.
And then there's the regular house chores, the writing of Lily and Archibald (working title), which is coming along nicely (I think). And the blogging and the reading...all sorts of fun things to do.

Oh, and a little thing called work. You know, employment.

I will take some pics of the new things I've got up around the apt. and post them here...probably later today. My camera needs new batteries...always more to do.

And ofr course there is the very tempting Vera Bradley sale at Feather Your Nest....

Two weeks!

Well less than two weeks now (since it's 9:30...) until my CI activation! Woohoo! I go on the 26th, first to have Dr. W check out the incision and surgical stuff, and then to have Beth (My CI Audiologist) work her magic as we get the first "Map" of my hearing done. Apparently this will involve another lovely audiology map test, checking my hearing before we activate the CI to make sure nothing's changed there. I hate those tests, they make me feel so stupid, because you have repeat words back. Well if you can't hear the word or understand it...I usually just end up sitting there going, "um..." But anyway. These appointments take about two hours so we'll see what happens. Hopefully it's good stuff!

transplants in popular culture: The Last Summer (of You and Me)

OK, if you want to read the above book, haven't yet, and hate spoilers, CLEAR OUT.

Room clear?

OK Good.

I just finished reading this book last night. I had read a lot of good things about it and I do like my modern fiction as well as the greatness of Jane. The plot revolves around two sisters, Riley (24) and Alice (21), and their friend, Paul (who I guess is around 22, 23). They have always spent their summers together at a Long Island beach, but now a relationship is springing up between Alice and Paul.

Anyway, Riley ends up having congestive heart failure and a lot of damage to her heart, possibly due to the two bouts of rheumatic fever she's had, the one recently caused by failing to finish a course of antibiotics for strep throat. Riley ends up getting sicker and sicker and is eventually placed on the heart transplant list. Her illness, and the secrecy she has sworn Alice to (she asks Alice not to tell Paul), leads to the disintegration of Paul and Alice's fledgling romance, at least until after things with Riley are resolved.

Now I am always glad to see organ donation in literature, movies, etc. in a positive/accurate way, since it has potential to bring the cause before a lot of people in a way that non-profits often can't. This particular writer, for example, wrote the widely popular series The Sisterhood of the Traveling Pants, so she already has a large following, and since this book is more adult than those, she has the potential to attract new readers (like the Sisterhood's readers' mothers). So I am glad for that.

However. (You just knew that was coming, didn't you?)

I do wish that the author had done some more research or presented the facts of transplantation a bit more clearly for her audience. There are a few things that are glaringly questionable:

1) From the outset it's made clear that Riley hates taking pills and is ambivalent about following rules. She doesn't finish her first round of antibiotics because she loses her beach bag, where the drugs were placed. Yet she doesn't try to get a new script. When you're evaluated for transplant, compliance is one of the main things centers consider, because they're not going to give an organ to someone who isn't going to take care of it. Riley's history of not liking to take drugs, as well as her lack of compliance in something as simple as treating strep, would not make her a good candidate.

2) Riley is a lifeguard; in the novel, she continues to swim even after she is placed on the list, in fact, she swims right up until...well, whatever. Now I have no doubt that that can happen. Heck, I worked until two days before my transplant! It's important to live your life as much as possible while you're waiting, or you'll go nuts. But she is portrayed as extremely sick; the author talks about her lips and complexion being bluish. She would've been on home oxygen therapy at some point, and thus unable to swim.

3) The family gets a beeper. NOTE TO AUTHORS/MOVIE WRITERS: You don't get a beeper anymore! For most centers it's too expensive, and with everyone having cell phones, you just get their numbers. Karen had every single number in our family, including Bryan and Mel's cell phones, so she could ALWAYS get ahold of someone. Which leads to point

4) Riley gets the call for a heart but she left her beeper at home and thus missed it. Note that this story takes place in TODAY'S time period. As per point 3 this would not have happened. The coordinator would've called all the other numbers on the list and they would've found Riley. Now whether or not she would've gotten the heart could've been done more realistically by having it be a 'dry run' as opposed to Riley not having her beeper with her and missing it that way. Because only having one number to call wouldn't have happened. The center did also call the house but, as usual in novels, no one was home.

OK I think that's it. Like I said, I'm glad to see transplantation becoming more prevalent in the media and popular culture. And I am aware of the dramatic element--that is, wanting to up the drama so that it's compelling. When I used to watch ER they usually had at least one CF case a year, and of course they were always pathetically sick. It made for good drama; it made explaining to my friends that I could have a normal life difficult.

Yes!

You know how I like to complain about washing my hair when the port's accessed? Or I'm in the hospital? Well I can complain no more.
Tonight I found shampoo that you spray on. And you don't have to wash off! It just absorbs oil and you are on your merry way! Now I haven't tried it yet (duh), and I imagine that at some point my hair would require a real wash, but this is great! For those of you who are curious, it's Frederick Fekkai's Summer hair Wash and Wear instant shampoo spray ($20), and it can be found at CO Bigelow, larger Bath and Body Works and larger Victoria's Secrets (Like ones that sell a lot of beauty stuff). Or, I'm sure, online.

Duck Fuzz

Remember how I mentioned that for the CI surgery, a small part of my head had to be shaved? You can't see it because the other layers cover it, but it feels odd to have hair and then...no hair

However I do enjoy running my fingers over it. We've reached the point now where I guess it's about, oh, maybe 1/4 inch to 1/2 inch long, so it feels like a little boy's crew cut. Or duck fuzz. Or something. But it's kinda cool. I just have to make sure I don't turn into a head-rubbing freak. :) Since no one can see it it would just look odd.

Memeing...again

Got this from Adoro and I liked it!

Here are the rules: Share four things that were new to you in the past four years. Four things you learned or experienced or explored for the first time in the past four years. Then share four things you want to try new in the next four years.

Four New Things in the Past Four Years: (2003-2007)

1. I graduated from college
2. I got new lungs. :)(OK maybe that should have been first)
3. I got my apartment
4. I got my first real job

Four Things in the Next Four Years: (2008-2012)

1. I hope to be married. :)
2. I hope to have something published other than in our local papers :)
3. I will have bought a house/townhouse/something
4. Maybe a Master’s? We’ll see…

A bag of emotions--updated

**This may be a rambling piece. If it is, I apologize.

One of my job responsibilities is reading and cutting the daily papers from around the state every morning. Two of our interns help me out, but since I've been doing this for almost four years now I'm extremely adept at cutting and clipping, so I usually do about 3-5 papers a day. This means I get to read many, many editorials and op-eds, which can have the unfortunate tendency of "getting my dander up." It hasn't happened for awhile though, and on some topics I've almost become immune to the idiocy that's spouted off like gospel.

But today that didn't happen.

The Cincy Enquirer runs a regular feature called "Your Voice" where readers can write their own op-ed columns. Generally this is a pretty cool idea and it's nice to read what "ordinary" people are thinking about current issues.

Today, however, not so cool.

The author of today's piece is an "environmental activist" and was writing about abortion. Now that should've told me everything I needed to know right away. But I am a glutton for punishment, apparently, so I read the thing. Even though I tried to resist.

She wrote about how pro-lifers really don't care about the woman's life. That sometimes abortion is necessary, even though no one wants it. Because it will save a child a life of suffering, or a slow death, or keep it from being abused by its parents because it is unwanted, or ending up in jail because it wasn't raised right. And then she gives us Jocelyn Elders: "every child should be a planned and wanted child."

Then there's the footnote that says she had two brothers that died of CF.

Well that just about did it for me.

I don't even know where to begin. I've covered the whole idea of the selfishness involved in abortion, to some degree--the idea that your life cannot be "interrupted" by a baby. As Mother Teresa said, "It is a poverty that a child must die so you may live as you wish." I've also talked about how you've made the "choice" to possibly hvae a baby the minute you had sex. The Pro-life movement emphasizes responsibility. Once the baby is conceived, once that sperm meets that egg, you've got a person. Deal with it appropriately--by not killing it. Please. If you don't want kids, DON'T HAVE SEX. Thank you.

It's the stuff about the child "suffering" that gets me. Who is SHE--who are any of us?--to say that?! How arrogant! As Charles Dickens wrote in A Christmas Carol:

Will you decide what men shall live, what men shall die? It may be that, in the sigght 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!

It is the height of arrogance. How blind we are. So that child doesn't deserve love, even if it is only for a few hours (i.e., as seen in Karen Santorum's elegiac Letters to Gabriel?)? More proof of the softness of our age. Suffering in any form is seen as so horrible that we would rather die. That's crazy talk.

And then the CF reference.

I'm confused by it. Does it serve as some sort of qualification for what she writes? If so she's insulting thousands of people with CF and their families. I certainly have never wished that I had never been born. I certainly never wanted my parents to have killed me. I love my life, always have. Sure, there are some parts that have been less than fun. But I would rather have had my life, with those moments, than no life at all.
CF isn't a cakewalk. There are complications, strange things, multiple hospitalizations, and emotional issues that most people will never go through in a lifetime, let alone as a child/teenager/young adult. You have to grow up fast. Your family's dynamic is forever altered. But the life is still worth living.

I cannot believe that this writer, who had two brothers with CF, could write a piece like this. I don't think she's implying that we should all be killed off. But it's just chilling to think of it. Didn't she see the rewards that come to a family from these situations? The growth? The bonding? The way you have to take care of each other? Either she missed it or it didn't happen.

We can be so selfish. These babies want nothing but to be loved and cared for. And to be given a chance. If you don't want the baby, give it up for adoption. I'll take it. I know many, many people who would take it. Killing the child is not the answer. And, in the long run, it will probably just make things worse. Groups like Project Rachel attest to the damage abortion does to women. So where is the benefit to the practice?

Easy answer: there isn't one.

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

Stories

Some of you are aware that I like to write creatively. I took classes in high school and college and have kept a journal since I was about 11. Fiction writing has always appealed to me, as has memoir/autobiography (as we know).
So when I turned 25 I got the crazy idea to try to write 25 short stories during this year. Don't ask me where it came from, it just did. So I've begun and I'm up to five. Two are actually accomplished and three are still being worked on. It's the most current that's given me the thought that it could (emphasis on COULD) grow to be something more than a short story.

I love the musical The Secret Garden. It has a fantastically complex score, a wonderful book and great characters. When I was in college, "How Could I Ever Know?" was standard recital fare for all sopranos, while "Hold On" was a chestnut for the altos. And for the men, "Lily's Eyes" is one of the best. duets. ever. I also loved the book as a child and even had a "secret garden journal", which was beautiful--creamy ivory pages, original illustrations and quotes from the novel throughout.

Anyway, my story idea is how Lily and Archibald met. They are Mary's aunt and uncle, whom Mary is sent to live with in the novel. (Well, OK, just the uncle since Lily's dead) The musical has a number called "The Man Who Came to My Valley" where Lily and Archie recollect their first meeting, until Mary stumbles upon her uncle, alone, in the portrait gallery (Lily is a ghost in the musical who appears throughout). The musical's other numbers also provide background into their relationship, as well as Lily's relationship w/ her sister, Rose, and Archie's with his brother, Neville.

I thought it would be awesome to use some of this material, the novel, and, of course, my own ideas to flesh this out. The musical actually focuses more on the adults than the kids, which I enjoyed, and lead me to think of this idea. So that's what I'm working on right now. Of course that means a re-read of The Secret Garden and ordering a copy of the musical's book on Amazon...like I need an excuse!!

I'm very excited about this project...will keep you posted...

I am the Household Queen

Today was like "Let's Rehabilitate the Apartment that I Neglected for Two Weeks Whilst I Lived With My Parents" day.

**I went to Feather Your Nest (great store in downtown Pickerington, antiques, Stonewall Kitchen and Vera Bradley!) for some mango chutney (new recipe I want to try uses it) and a soap dish for my kitchen.

**New cookbook on sale at Barnes and Noble.

**TJ's trip for staples--I cleaned out my fridge and tossed a lot of stuff, thereby necessitating the trip. But really, do I need a reason to go to TJ's? I think not.

**MASSIVE kitchen cleaning. Cleaned cabinets, cleaned stove top, cleaned a floor a bit. Tomorrow I'm going through the cupboards.

I love getting off work at a reasonable time. :) Nopw all that's left is the disaster known as my Kitchen Table...when you can see it...

We're your friends!

H/t: Wheelie Catholic

This is a lovely bit of "right to die" mumbo-jumbo from the left (actually, the Huffington Post): (my comments in bold)

Russell Shaw
Disability Advocates, Get Over Your Fear of Us Right-To-Die Folks

I live in Oregon, the only U.S. state in which physician-assisted suicide is legal.

I recall a conversation I had a few years ago with one of the major advocates for this legislation. She told me that some of the most vocal opponents were disability rights advocates.

In this, the week that admittedly creepy Jack Kevorkian is released from prison, we're hearing murmurings again from the disability community.

According to the website DiversityInc:

"The furor over Kevorkian's release is being led by Not Dead Yet, a national disability organization that views assisted suicide as the "ultimate form of discrimination (that) has been ignored by most media and courts." The organization states that "For some, a disabled person's suicidal cry for help was ignored, misinterpreted, or even exploited by the right-to-die movement."

Admittedly, I don't have the immediate personal sensitivity to this issue that some disabled persons might have. But as to physician-assisted suicide, I have noticed the cascading inefficacy of pain killer pharmaceuticals administered to some dying friends and loves in their last days on Earth. Look, pain control is NOT an issue. At all. There are plenty of drugs that will make you pain-free. Now, they may be in doses that are dangerous, or may impair cognitive function/breathing/etc., but if you're dying, what do you want? To be sane and in pain, or out of it and pain-free? Becoming a junkie isn't a major concern at this point. To say that pain is THE issue is, um, wrong.

From where I sit, I don't see how compassion in dying has anything to do with disability rights. For those of us who want to offer dignity oh the magic word!to those whose pain can no longer be nursed which is NOT possible, at all, the fact that our society too often treats the disabled as second-class citizens also is a powerful assault on our humane sensitivities.If you want to stop treating us like second-class citizens, then build more restrooms for us. Don't stare at IV ports or insulin pumps or wheelchairs. Don't ask stupid questions. Do/don't do a lot of things. But killing isn't really an option.

Could the real issue for some disability advocates be that ongoing life experiences have convinced you that able-bodied citizens feel you are "in the way," and that right-to-die types have as the ultimate goal more tools to get you, our disabled brothers and sisters, "out of the way?" Well not to put too fine a point on it...but let's look at it this way: the number of childrne born with Downs Syndrome is decreasing. It's not because we've found a cure, kids.

While I don't have the life experience to see things from your perspective, I have to tell the disability advocate community that such a mind-set strikes me as a bit paranoid. I liken it to the fear in some minority communities that some forms of contraception are really efforts at medically sanctioned genocide. Have you read Margaret Sanger? Have you read early abortion-rights literature? That's what it was, honey. It was an attempt to limit the growth of minority, specifically black, populations. And they weren't exactly subtle about it.

Disability advocates, please understand we right-to-die types are not your enemies. We are your friends. Suuuuure. OK.

As they say, "With friends like these, who needs enemies?"

Another meme...because I like them!

From Nutmeg:


“For this meme, each player lists 8 facts/habits about themselves. The rules of the game are posted at the beginning before those facts/habits are listed. At the end of the post, the player then tags 8 people and posts their names, then goes to their blogs and leaves them a comment, letting them know that they have been tagged and asking them to read your blog.”

**I must read something before I go to bed at night. Even if it's only for a few minutes, I cannot go to bed without reading.

**I make really, really good pasta, taught to me by my father and he learned from his mother/grandmother before him. So, therefore, I am making you REAL Italian pasta and not this quasi-pasta stuff so many places give you!

**I love to scrapbook and take pictures.

**I cannot draw.

**I always got "refrains from unnecessary talking" checked on my grade school report cards. It didn't do much to stop the habit, apparently.

**I bite my nails. Always have. Always will. Can't stop.

**My first theatrical role was as Snow White in my preschool's Parents' Day production. I got nervous and hid behind the kitchen set. :)

**My middle name is spelled with only one "l". People mess that up a lot. But not as often as they mispronounce/misspell my last name. That's annoying because it's not that hard!

Um, I don't know eight people to tag. So hmmm. Anyone who feels like it. :) But come back here and let me know you did it.

Work!

Back to work today--I even got there early! Well, OK , part of that was due to my stupid uneven head which led to an inability to sleep (I am so doing the Tylenol PM tonight kids. So definitely.), which lead to it being pretty easy to get up when the alarm went off.
I am all caught up, and even started doing some regular work, so I am proud of myself. I thought I'd be super-behind since we were supposed to be busy today. Don't get me wrong, we were busy, but the boys had most of it in hand and didn't need reinforcements, so I was able to catch up and get organized. Fantastic.
Head feeling OK, it can still be a pain in the butt though. I'm wary of starting pilates/yoga again due to some of the positions my head would be in. I suppose I could modify them, or just skip them. Parish Council went long tonight so I'll just do some minimal stuff and try the modified yoga tomorrow.
Hoping to get some letter writing/reading/journaling in before bed...started A Wonderful Welcome to Ozlast night by reading the Gregory Maguire introduction, and am hoping to read the beginning of Mansfield Park tonight.
Oh, btw, saw the bill for my surgery today....$77 THOUSAND. Can I say how much I love my insurance company right now? We don't have to pay any of it. Mwah insurance company. Mwah.

Back to life

I am back at the lovely apartment, with most of the unpacking done, and getting ready for what will be a wild week at work...yay Budget Highlight Doc! And Controlling Board tomorrow so we will be a busy place. But it will be nice to get back to work and be a productive person again (not that reading like a fiend and shopping occasionally didn't make me productive... :).

Ha ha!

All right, stitches out. Woohoo! I don't have to go back to see Dr. W for another 3 weeks, which we managed to aline w/ the day I get my C.I. activated, so I'll be spending a lot of time there on the 26th, let me tell you. But it's better than going back and forth...back and forth...
I know I've said this before, but even after the initial activation on the 26th, I still will not have great hearing. In fact, I have no expectations. I'm guessing it will be better than it is now, which is, essentially, no hearing in my left ear. So anything is an improvement. It will take many months until it is really where we want it, and adjustments continue for up to one year post-surgery. So warning to all of you who know me--the Bionic Hearing is not Immediate. :)
In other news...working in War and Peace, which, I've decided, is actually just a bunch of stories woven together, and as such, it's not a bad read. Also reading The Grapes of Wrath which I am (shockingly) really enjoying. Also finished P&P and will start Mansfield Park sometime this weekend. Whew. Good thing we didn't do surgery on my eyes!

Update time

Tomorrow will be the "one week" mark, and things are, in general, going OK. Sleeping is still a very off and on proposition, which irritates me, because we know how much I love my sleep. :) It also doesn't help that's it's been pretty humid here, with a lot of thunderstorms, which I generally like, but they don't seem to like my head. (Or my head doesn't like them. One of the two.) But in the grand scheme of life, things aren't too bad.
Still reading like a fiend...read Elizabeth Berg's Until the Right Thing Comes Along last night, which was pretty good. Not my favorite of hers, but it's OK. It was a quick read, which is what I wanted, to take away from the War and Peace and B XVI book madness!
Also watched The Painted Veil...check out the 11th Commandment for more on that. :) (Yes, a shameless plug. Hah!)

GRRR

Back to not sleeping! Since sleep isn't happening I might as well blog...or at least update the side bar (which I have done).
On the plus side, I love these low-cal fudge bars that I eat whenever I can't sleep. It seems like hunger or my head, or both, are conspiring to keep me awake. Sigh.

I knew it!

Elizabeth Bennet

Often called Lizzy, Elizabeth is the heroine of Pride and Prejudice. The seceond eldest of five sisters, she is witty and intelligence, though her prejudice prevents her from recognizing her true love when he appears. However, Mr. Darcy, though he appears proud, wins her love and respect, but not before she believes she's lost him forever.

Which Classic Heroine are You?

Voodoo time

No, not really, don't panic.
One of the things I forgot to mention about the surgery was that Dr. W used tiny needles to indicate the placement of my facial nerves, so he wouldn't get too close and nick them during surgery (or, heaven forbid, do worse). I was like a little voodoo doll--I noticed I have a very very tiny mark on my forehead from where one must have been.
Sleeping is still sort of a weird thing; I sleep in spurts and then want to get up at like 5 a.m. This is very weird for me (but I don't have to tell you that). The sutures seem to be doing OK. Overall it feels like someone put a dollar coin in my head right b ehind my left earlobe. It's weird to tuck hair behind it. But I am lucky that I have hair to cover it. The shaved area isn't all that big but I can deal with the purple-ish bruise a little better.

Funny :)

A quote from Disney that seems applicable right now:

"No! Don't pull on her head! She's recovering from surgery!"--Lilo, Lilo and Stitch



Lilo and the aforementioned doll. Oh, and Dr. W did a better job than Lilo did on the closing. :)

Dressing's gone!

So I look slightly more normal! The area behind my left ear is bruised pretty good (sort of an eggplant color, from what I can see), and I'm not totally sure what the scar looks like because I can't turn my head quite that far. But I washed my hair (w/ mom's help) and we put neosporin on it to keep it clean, so it doesn't look too bad. I'm glad I'm not a boy, though, because at least my hair covers the spot. I love my hair right now. :)
Overall am feeling really good, surprisingly. Hopefully the trend continues...

Pictures...

Haven't had a few in awhile, so here for your viewing pleasure:

I'm baaaack!

And we're back!
So to wrap up:

Well, the surgery time kept getting pushed back. First it was 9:30 then it was 11 something and then, finally, we settled on 1:30 (which was more like 2, but oh well). So Dad came over to my apt. around 11, and we cleaned out the trash, did some final packing, etc. before we headed over to Riverside.
The campus is nice, and it wasn't too hard to find a place to park, since everything is color-coded (yellow, red, green, purple, blue, etc). I was in the "yellow" section but we parked in Green, which meant a short jaunt through the hospital to the surgery waiting area, where we arrive promptly at noon like we were supposed to. Boy was it crowded. I don't think I've ever seen one that crowded. Dad said the one at Children's isn't like that, but Mount Carmel (where he goes w/ Mom for her surgeries) is.
The women at the desk were nice (actually, everyone here was nice--good thing) and we registered and waited a few minutes until a woman from surgery came down to get us. The cool thing was this wide-screen monitor that listed all the patients and where they were in the surgical process, from check in and post-op. Very cool. :) I liked that. Dad said they had one at Children's but since I've never waited for anyone to come out of surgery I obviously wouldn't know. :)
We were taken up a floor to the pre-op area, where I got a bed, a gown and huge hospital socks. :) These gowns were somewhat nicer than Children's since the sleeves button, so when nurses wanted to access my port we didn't have to pull down the whole gown and give everyone a great view of my chest. But I guess you can't do button gowns at a kids' hospital because you'd probably have a bunch of naked kids running around as they figured out how to undo the buttons!
I had three nurses, but I mostly saw Ann, who was really nice. We did the usual pre-op questions, and I was very glad we had brought my med bottles in with me because all I had to do was give the bottles to Ann and she could just write them down, along w/ the time I took them each last. It made life so much easier! We also accessed the port and started IV fluids.
Dr. Willett came in right away and talked to me about what to expect, etc., both pre and post-op. They would "check" the implant right away to make sure it was working and in the right place. Now that doesn't mean I can hear now (because I can't, not until I get the outer part of the implant at the end of June) but they were able to check it and I did respond, apparently, so it's in the right place and once we activite it I will be able to hear. This is a complicated thing to explain, no? Sorry. I'm doing my best here. He also said there would be a lot of buzzing (which there is) and stuff like that.
I also had to do the lovely pre-surgery pregnancy test (even though I am never pregnant, oh well). Right before we went back I met the anesthesiologist, who talked me through it and asked me if I had any questions. He was very business-like but good. Knew what he was doing. :)
Around 2 I went back to the OR--the last surgery had run a little long. I got to keep my glasses and my hearing aid until right before we started, which was nice.
The OR itself was medium-sized, which was nice, because those big ones can be kind of scary. Even though I could still see and hear, I got a little freaked out right before we started; there's all these people working on you, and they're so close, that it can freak out the most calm person, I think. I received the oxygen maskl and right after that the Doc slipped some sedation materials in my line, and I was gone. :) Yay!
The susurgery took about five hours, and I finally woke up (well, kind of) in a room hours later. The room was a double but I was the only one in it; Dad spent the night and took the other bed, which was nice for him, since he didn't have to sleep in a chair like he normally did. I threw up a few times, but Dr. W was great about having pain killers and anti-emetics given to me, and the nurses were great about giving them! So overall I was pretty comfy.
Dr. W came in this morning around 7:15 to change the big dressing to a (slightly) smaller gauze dressing; it looks kind of like a big-fat headband. :) Obviously it is thicker on the left side than the right and I can't lay on my left side (not that I would want to, anyway!). About an hour later I got to go home w/ some scripts (a pain killer and an antibiotic) and tomorrow we can take off the big dressing and just put neosporin on the stitches twice a day until I go to see Dr. W next Friday, when he'll remove the stitches. I can even wash my hair, albeit gently, so that's a good thing.
All in all, things going well so far. Happy about that. I'll let you know how things go tomorrow...

Surgery tomorrow!

Well the time's been moved to 1:30, so we have to be at Riverside at noon, which means Dad will be over here around 11 to help me move stuff into the car and clean up the apt. before we leave. At least I'll have time to get stuff done in the AM, but I'm going to be grouchy being NPO that long, which is why I am pigging out now. :) Ha ha. I figure the next two days will be light eating-wise. So enjoy it now....
No blogging tomorrow, possible resume on Thursday. Not sure.

Books! Again!

I love this meme, from Fr. Z and the Hermit. So even though no one's tagged me I'm doing it, darn it!

Three fiction books everyone should read:
1) Jane, Pride and Prejudice
2) Michael Cunningham, The Hours
3) Milton, Paradise Lost

Three non-fiction books everyone should read:
1) Thomas Howard, On Being Catholic (even if you're not Catholic, dag nab bit)
2) David McCullough, John Adams or 1776 (depending on your stamina)
3) JPII, Crossing the Threshold of Hope

Three authors everyone should read:
1) Jane! Jane! Jane!
2) Dostoevsky (at least once)
3) C.S. Lewis

I tag Nutmeg and Liz. If they read this. :)

Countdown: 2 days

Well only two more days until the C.I. surgery...oh the joy! Like I said I'm not so much excited as I just want to get it over with, you know? Being able to hear even slightly better will be a big boost to me and will certainly make everyone around me happy. (Or happier)

We go to Riverside on W morning, the time is TBD. Last time I believe the surgery was set for 9:00 so that meant we had to be there at like 7. Not that I'll mind because I'll get to sleep plenty. I will be staying over night so there won't be any blog activity from Wednesday to Thursday for sure. Potential re-blogging to start on Friday. I will be at home during the recovery so I will have wireless, which may mean more posting once I'm up to it. :)

The surgery can take anywhere for 1 1/2 to 5 hours, although we're only doing one ear (my left) so it shouldn't take five hours. You can do a heart transplant in 5 hours, come on! I have no idea what it's going to really look like, post, so I'm sure that'll be a fun discovery. It's very odd to consider having things done to my head, you know?

I have some new books, of course: Jesus of Nazareth, Reason to Believe, The Grapes of Wrath, The Painted Veil. So I will be entertained, at least. And the Jane Austen project continues apace; I finished the Cambridge Guide and am working on The World of Her Novels, which is fantastic. Loved it.

book update

So here's how the reading from the massive Book Binge is going: (bold means I've read it, a star - highly recommended)

--War and Peace
--C.S. Lewis, On Stories *

--Jennifer Cruise, Fliriting with Pride and Prejudice
--Deirde Le Faye, Jane Austen: The World of her novels
--The Cambridge Introduction to Jane Austen
--The Cambridge Introduction to Virginia Woolf
--Ross, Jane Austen *

--What Jane Austen Ate and Charles Dickens Knew

--Elizabeth Berg, Dream While You're Feeling Blue *

Now reading: Introduction to Jane Austen, Jane Austen: The World of Her Novels
I am also going to re-read Late Have I Loved Thee (*) for a POTENTIAL submission to Dappled Things.

Two in a row!

Yes, another good clinic!
PFTs good, NiOx was broken, so can't tell you what that was about. All the labs are good. So we are set for surgery next week. Oh the joy!
Everyone keeps asking me if I'm 1) nervous and/or 2) excited aboutt he surgery. The honest answer? I just want it done. I want to be able to decipher sound. That would be really, really great. Even though it will never be as good as natural hearing, it's GOT to be better than what it is now, with everyone sounding like Charlie Brown's teacher and me being unable to really use the phone. I will say that I like the fact that no one calls me at home. It's nice for it to be so quiet. :) But I also miss the communication aspect of it. And I'd like to be able to hear everything in session at work, too. And the benefits for my music will go without saying. :)
AND I exercised today! Go me!

Major book binge

The books I just bought:

--War and Peace
--C.S. Lewis, On Stories
--Jennifer Cruise, Fliriting with Pride and Prejudice
--Deirde Le Faye, Jane Austen: The World of her novels
--The Cambridge Introduction to Jane Austen
--The Cambridge Introduction to Virginia Woolf
--Ross, Jane Austen
--What Jane Austen Ate and Charles Dickens Knew
--Elizabeth Berg, Dream While You're Feeling Blue

Wow.
And am still reading Queen Isabella, which is a great read thus far. I have finally made it to part II. Yay!

Well at least I'll have stuff to read in the car when we go to Pittsburgh this weekend!

Major book binge

The books I just bought:

--War and Peace
--C.S. Lewis, On Stories
--Jennifer Cruise, Fliriting with Pride and Prejudice
--Deirde Le Faye, Jane Austen: The World of her novels
--The Cambridge Introduction to Jane Austen
--The Cambridge Introduction to Virginia Woolf
--Ross, Jane Austen
--What Jane Austen Ate and Charles Dickens Knew
--Elizabeth Berg, Dream While You're Feeling Blue

Wow.
And am still reading Queen Isabella, which is a great read thus far. I have finally made it to part II. Yay!

Well at l;east I'll have stuff to read in the car when we go to Pittsburgh this weekend!

For mother's day

Great story from Human Events:

For Mother�s Day - A Mother�s Determination
by Tom Purcell (more by this author)
Posted 05/09/2007 ET
Updated 05/09/2007 ET

It was 1994. She thought she’d heard a faint wheezing in her baby’s lungs. She took her baby to the doctor right away, who sent her to a specialist.

The doctor said it was nothing -- probably a touch of acid reflux. He said it was common for new mothers to overreact. He said he’d run some tests to be safe.

Later that night, she was preparing for bed. The phone rang. It was the doctor. Her daughter tested positive for Cystic Fibrosis.

The doctor warned her not to panic. The tests could be wrong – he’d run them again the following day. He warned her to avoid reading about the illness until it was confirmed.

But she couldn’t wait. She threw a rain coat over her pajamas, grabbed her sleeping baby out of her crib, then rushed out to a late-night book store. As she cradled her baby in her arms, she read everything she could about CF.

It is an hereditary disease that causes a child’s lungs, intestines and pancreas to become clogged with thick mucus. It is fatal. She’d be lucky if her daughter survived into her 20’s.

She broke down in the book store. She slid to the floor, crying uncontrollably as she held her baby tightly. She cried as though her baby had already been taken away.

The doctor confirmed the lab results. The pain was unbearable. She and her husband did not know what to do.

She reached out to a friend. Luckily, her friend knew plenty about CF. She knew former NFL star Boomer Esiason and his wife Cheryl. They have a son with CF. They’ve done extensive fundraising for the Cystic Fibrosis Foundation, and now head their own foundation.

The Esiasons contacted her right away. They understood her pain well and consoled her. They shared everything they knew about the illness.

She was instantly transformed. She began channeling her pain into mastering CF. She learned how to apply medications and treatments to give her daughter the best hope.

She learned of CF’s other challenges, too. Though there are 30,000 Americans who suffer from the illness, the number is too small to spur drug companies to do research. The CF market cannot generate enough revenue to recoup the millions needed to develop new drugs.

So she took the bull by the horns. She quit her job and jumped into the CF fundraising business full time. She joined boards and chairs events. She gives speeches wherever she can.

The money she raises goes to the Cystic Fibrosis Foundation. It hires its own scientists to advance its own medical breakthroughs (90 percent of the funds raised go directly to research). Thanks to so many just like her, the average lifespan of a child born with CF has jumped to 36.5 years.

But that isn’t good enough for her. In 1998, her second daughter was born with CF. There was only a 25 percent chance that she and her husband, both CF carriers, would have another CF child, but fate struck again. They felt unbearable pain again.

Every day is a battle for her now. Every day, her girls must take a collective 34 pills and an array of oral medicines. They must complete 10 breathing treatments and six 30-minute therapy sessions. The treatments and medicines are designed to extend their lives.

Every day, she works tirelessly to raise money to advance any technique or medicine that might extend a CF child’s life a little longer -- that might, if promising new research goes as hoped, cure this dreaded disease.

Hers is the story of a mother’s love -- a mother’s powerful determination to breathe life into thousands of children.

Her name is Angela Kinney and she could use a little help. She’ll be participating in the Great Strides walk in Pittsburgh on May 20th (an event that is held throughout May in cities across America). To contribute to her efforts go to www.cff.org/great_strides/angiekinney or contact her directly at angiekinney@comcast.net.

You might want to wish her a Happy Mother’s Day while you’re at it. She’s certainly earned it.

Ear notes

Something I've noticed...
A lot of people seem to think that since I need a C.I., that I'm deaf and can't hear anything. That's not exactly true. I'm always getting asked "can you hear that?" or "I hope you can hear this" if I'm at a concert.

It's not a question of "hearing." I can hear sounds. I know when people are talking and I know when people are talking to me. It's a question of deciphering what I'm hearing, which is what the CI will help with. Right now, there aren't that many of the "Hairs" left in my cochlea that pick up sound. As a result, my brain has sort of "forgotten" what certain things sound like. So it's the translation of sound into information. I can still hear certain things, even though some upper pitch ranges are gone, which is why I usually can't hear phones or doorbells or microwave ovens. It's also why men's voices are easier to understand than kids or some women.

Wanted to clear that up for all of you--I can still hear , I just might not be able to understand .

"Suffering"?

Here's a thought...

I just got an email today from someone who's doing the CF Great Strides fundraising walk this weekend. She said that she was motivated to do it because she knows afamily who has a 2 YO boy who "suffers" from CF.

I never used the word "suffering" or its derivatives to describe my experience. It was normal life for me. Sure, there were times that were not so fun. But "suffering" or "CF suffer" always sounded, well (OK this is punny) "insufferable" to me. It just sounds so needy/beggy/whiny.

Is that just me?