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 The biology books were bad enough (so outdated!)--did fiction writers need to make life harder, too?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

Fashion Note

Spring is upon us in many parts of the country. That means--flip flops are back.
I sort of hate these shoes.They're good for very few things in life: the pool, the beach, the locker room shower, taking out the trash, or running very brief (like getting gas) errands.

They are NOT appropriate in the office. Ever. At all. Let us all wear real shoes to work, please. These consist of a proper sole and foot covering that's more than a mere thong between toes. Even the most strappy sandals have a heel, and a real, honest-to-god sole.

And if you are walking to work, wear running/walking shoes! Flip flops provide no support, hence the "flip flop" name. But then the Nikes come off when you are at your desk!

Let's make this simple: If you can wear it in the gym shower, you cannot wear it in the office. 'Nuff said.

(oh, and I don't care how bedazzled and bejeweled they are. They. Are. Not. Shoes.)

Well, thanks

So we have "health care."
I've written a lot about it on this blog. I'll try to go through the archives and pull the most relevant stuff over the next day or so. But if you're a long-time reader, you know this isn't good for kids with CF, or really any chronic disease. I am NOT happy with this decision on multiple levels,  but mostly because this will negatively impact the CF population.
We don't live that long to begin with. We don't need Congress making our lives even shorter.

UPDATE:
we can start here, with CF in Ireland.
And in Australia.

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 

SOTU

This speech is ridiculous. That is all.
Highly partisan, more like a campaign speech that a stateman's address.
Pot shots at the GOP, SCOTUS, the last president...real nice.

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.)

School Funding 101

OK, I am NOT going to go into the crazy, convoluted, insane state that is current school funding in Ohio. Not gonna do it. 

However, I am going to give you one basic distinction:

**LEVIES are passed by local communities. 

**The STATE can allocate certain amounts of General Revenue Funding (GRF) to schools. Right now, schools and medicaid make up about 70% of Ohio's budget.

**THE FEDERAL GOVERNMENT (aka Congress) can also allocate money for funding. 

Here's the thing--when you get it from the state, or the feds, it is much, much more likely to have strings attached. I.e, here is federal govt. money, but it can only be spent on reading/math/ gifted/early childhood/whatever education. 

Furthermore, as we are discovering--it is really, really hard to get "equitable" school funding without screwing one or more districts. You're either being Robin Hood, or Robin Hood in Reverse. 

So--if you want money for music, etc.--you need to work for local/state levies to get that funding. The local level is the best. 

Oh, and note to those who have "I want the military to have bake sales to buy bombers" bumper stickers--appropriations at the federal level are not subject to balance budget statutes (like they are in Ohio, for example).  But yes, generally, the DOD (Department of Defense) gets more money than the Department of Education. It helps that the preamble to the Constitution specifically states that "provid[ing] for the common defense" was (is) part of establishing the country in the beginning.

 

So--summary: 

Do not blame the feds when people in your district vote down levies. 

AND

If you would like more money for education, then be prepared to say where other areas should be cut. Roads? Health care? Human services? You pick. 

What does volunteering have to do with college?

Um....I don't think a lot. But apparently our fearless leaders do. (warning: Sailor-like language)
Now before I get all sorts of angry comments, I'm not against volunteering. Volunteers do great things. I volunteer at church, for Lifeline of Ohio, etc. The world needs volunteers.
That said--the genesis of volunteering is that you are doing it freely. You do not expect tangible reward. You're doing it because it's important to you. Forcing kids to volunteer takes that entire angle away.
Second--why should volunteering have anything to do with college? College scholarships should be tied to one thing--grades. From the bill summary:

Puts young people onto a path of national service by establishing a Summer of Service program to provide $500 education awards for rising 6th-12th graders, a Semester of Service program for high school students to engage in service-learning, and Youth Empowerment Zones for secondary students and out-of-school youth. (um, what does THAT mean?)

From the link:

First, public or national service is profoundly un-American as a historical concept and comes always and everywhere slathered in the stink of trench warfare and rhetorical horses***. This is especially true when it is paid service even as those participating and spending your tax dollars luxuriate in the silky-smooth language of altruism. Which, last time I checked, was supposed to be free. Jesus rendered unto Caesar; he didn't ask for a block grant from Pontius Pilate in return. That Obama pushes national service and voluntarism even as he works to limit tax breaks for charitable giving that drives all sorts of philanthropy is a classic screw-you, my-way-or-the-highway move.

I'm not a bad person! Really! I just don't want my tax money going to pay volunteers. And I mean myself. I don't volunteer because I want money or recognition. I do it because I care about organ donation, I care about my church and the activities/events we provide. Things don't get done unless people step up. And really, I want people in my group that want to be there, not because they'll get paid if they show up, or will get high school credit, or whatever.

Ridiculous

No wonder kids don't learn anything!

(not to sound way old, but....)

When I was in elementary school, we turned off the lights to reduce the heat during the late-spring, late-summer months. And I will tell you, we didn't learn a whole lot doing that. Instead, I believe we had nap time. Heads on the desk--in sixth grade. Yup.

It's a big tent

Except for (h/t Corner...I bolded all that apply to me)

Celebrate Diversity . . .   [Peter Kirsanow]

except veterans, small-business owners, practicing Catholics, gun owners, talk-radio listeners, tea-party attendees, Texans, smokers, limited-government proponents, pro-lifers, taxpayers, NASCAR fans, Boy Scouts, oil-company employees, secure-border advocates, capitalists, global-warming agnostics, Cuban refugees, school-choicers . . .

My nanny-state note: I do NOT feel bad for smokers. At all. Actually, when I see one I sort of want to go vomit on my shoes, because really, they are killing themselves and making their lungs (and other organs) unusable for others. I know many smokers, and I love them (I mean, come on, I'm in the theater, lots of smokers), but come on! 

UPDATE: Upon re-reading that I realized it didn't make a lot of sense. So let's just say this--hate the smoke, lover the smokers. But the habit still really makes me want to shake people and whack them upside the head. 

Failure! (and 9 DAYS LEFT!)

I cannot knit.
It's just not in me.
I can get that first stitch, but after that...
Nothing.

PLEASE HELP! I don't want to be a failure at knitting!!!!

(It seems like every other girl in Parade can knit. And I can't.)

With real Parade notes:
--I saw my costume. It is a pretty dark blue skirt (sort of royal blue?), with a white blouse with fun ruffling. I also have button boots, thanks to Abby ($5!). We were nude hose with our costumes. We may have hats and gloves, too. For the Governor's Tea Dance, I will have a blue sash around my waist. My skirt hits a little below the knee, but Rachel (our costume Queen) said she might take it up a bit more.
--We ran the Trial Scene and "Where Will You Stand?" with scene changes. "Where" is about a B, B- right now. It's getting there.
--Costume parade tomorrow for Jen and Frank, and then publicity pictures! Yay!!!

A Health Care Rant

OK real quick--

in a lot of papers yesterday, there was a story about how millions of people can't afford their prescription drugs. OK. This isn't really new. 

Some of these stories allowed comments beneath it. This is where people continue to amaze me. They talk about the evil corporate drug companies who are just out for profit, and it's all their fault!

As Mitt Romney said back in February '08, Drug Companies Are Not Evil. 

Do you know how much it costs to develop a new drug? How many trials have to be done? How many scientists you have to pay, lab time has to be bought, oh, and ingredients? How much trial and error before you get a drug that actually works? 

This costs money. I'm sorry. And yes, drugs like mine, which fewer people take, costs more, because not that many people need tac or imuran to stay alive. 

Look--the U.S. develops a TON of new drugs. This costs money. So you can pick--have the drugs available, or don't have them available, which means certain things, like transplants, can't happen, because we can't solve the rejection component. 

It's expensive to stay alive. I know. Should it be this expensive? Discuss. But please do not just blame it on the drug companies. 

Political Correctness--in TRANSPLANTS???

From today's Dispatch:

• UNDER THE old system of distributing livers for transplants, the preponderant factor was how long a patient had been on the waiting list, and black patients were more likely to die than white patients. That's because blacks tend to wait longer before putting their names on the lists.

But since 2002, organs generally go to the sickest patients. And that has made the system more racially fair.

Strangely, though, the change has resulted in a rise in the chances that women will die or become too sick to receive a transplant.

Why the change seemingly has worked against women is unclear, so experts should be hesitant to tweak the policy. Transplants should not be based on race and gender.

OK, look folks--SICKEST PATIENTS GET THE ORGANS. That's it. That's the way it is. There are too few organs to go around without dilly dallying about GENDER! Get real!

Oh, and just in case you didn't notice--I'm a girl. I got one. So let's move on, please.

Another thing to be Thankful For

That the U.S. isn't as crazy (yet) as some groups in Canada. 

Um....OK....

So, um, how are we supposed to do this:

America Serves

"When you choose to serve -- whether it's your nation, your community or simply your neighborhood -- you are connected to that fundamental American ideal that we want life, liberty and the pursuit of happiness not just for ourselves, but for all Americans. That's why it's called the American dream."
The Obama Administration will call on Americans to serve in order to meet the nation’s challenges. President-Elect Obama will expand national service programs like AmeriCorps and Peace Corps and will create a new Classroom Corps to help teachers in underserved schools, as well as a new Health Corps, Clean Energy Corps, and Veterans Corps. Obama will call on citizens of all ages to serve America, by developing a plan to require 50 hours of community service in middle school and high school and 100 hours of community service in college every year. Obama will encourage retiring Americans to serve by improving programs available for individuals over age 55, while at the same time promoting youth programs such as Youth Build and Head Start.

Let's revisit my high school/college days for a minute, huh?

1998: TB diagnosis, so I basically spent an entire semester trying to stay awake in class. There would have been NO 25 hours of community service.

2001: The ICU episode--again, no community service. I had these things called "Classes" to make up and finish. You know, for my degree. Which is the whole freakin' POINT of college. Not community service.

Now I have a compromised immune system. Where would The One suggest I help out? Not nursing homes. Not free clinics. Not places like libraries, etc. during any fall-winter seasons. In fact, almost NO WHERE during fall/winter seasons.

This is my problem with liberals, and even some conservatives--they do something that SOUNDS good, but then when you look at it, you go, "huh?" How are people supposed to do this if they have other issues? Where's a kid going to get a part-time job if s/he wants one?

Another good example of this is mandatory gym. I was HORRIBLE at gym. Really, really horrible. I couldn't run a full mile, and I certainly couldn't do it in any decent time. But people are always pushing gym. I was so GLAD when it was over.

OK rant for today done.

Thoughts, rants, etc.

A hodge-podge of things, before I go to visit Todd tomorrow: 

• We are turning to football for political prognostication. It's true. If the Giants will 5 games before election day, the incumbent party holds the presidency. If, however, the Steelers win tonight, then the prognostication is that The One Shall Be Election. 

I might actually be rooting against the 'Burg. 

• In more relevant news for our purposes: tomorrow's Resort Visit. In order to vote, I'm going to get up at the godforsaken hour of 5:15. Yeah. That'll be fun. Polls in Ohio open at 6:30 a.m. I have to be at CH an hour later. We'll see what happens. Because, you know, if I don't vote, then it's a sure thing that I'll get bronched. No question. 

So, I head to the Resort for blood draw, then CXR, then up to clinic for PFTs, NiOx readings, the whole 9 yards. And then I wait and see what The Powers That Be Decide.

This is where transplant stuff is really different from CF stuff. With CF stuff, I could usually look at my numbers and go, "OK, here's what we're doing!" I was rarely wrong. 

Transplant stuff, not so much. First, there are about ten billion numbers (I'm exaggerating, but not by much.). Some of them I see, some of them I don't see. Sometimes the numbers are "OK", but I get bronched anyway. Sometimes I think the numbers are bad, and nothing happens. I have no real "inner guide" on this one. 

There are some things that are real bellweathers--if my blood work is way off, or if my PFTs drop dramatically (like more than 5 points). PFTs have always been sort of inexplicable. You can come in and feel great and blow like crap, and vice versa. Or if the CXR looks like Poland in January (that is, really, really white) then there are issues. I'm not a productive cougher--meaning I don't bring up mucus samples for them to test. So if we want a sample, we usually have to bronch to get it. 

Puls Ox numbers (the amount of oxygen in your blood) can also be a factor, although I was at 95% (the lowest end of 'normal') before transplant, so this number is sort of eh for me as an indicator. 

So with all this numerical insanity, plus trying to vote before all of it tomorrow, it's going to be a long day. And a long night.

And for you political junkies, the rap in Ohio is that we're not going to be called until the wee hours. So brace yourselves. 

• 
  

Mel update

Mel is back home. She can't eat *real* food for like a week, which totally freaked me out. If my docs said I couldn't eat for a week, I would be dans l'hopital. She can drink stuff, but that's about it. It would be IV fluids for me!

Anyway, apparently some pill she was taking for the cellulitis on her leg got caught in her esophagus and didn't dissolve, leading to a very, very irritated esophagus. 

(Mel tends to have very odd things happen to her.) So after the test today, and once she could eat "food" (which probably meant clears, such as jello and broth--the joy!) she was sent home (much to dad's relief because he HATES hospital weekends. Hates them. Not that anyone really likes them as it is.). I would imagine she'll be at home until she can actually eat. 

So another medical mystery solved.

In my world,  I am NOT HAPPY with the new triglyceride drug that Dr. A has put me on. It's some "N" drug (I forget what it's full name is, and I'm not going to go turn all the lights back on to check, LOL) that, apparently, is NOT doing it's job, because my triglycerides are only down a little bit. 

This drug is a drug that has "instructions", which I hate. That means you have to take it at a certain time, with a certain food, with a certain drink. OK  FINE.

But even if you do all that, you will still get what the med sheet calls "flushing" of the skin. 

You would think that means you just feel warm, right?

No. 

Warm I could handle. 

What this is feels like a full-body sunburn, complete with a very, very itchy rash. If my skin wasn't red before, it is now because I am scratching like mad.

The thing that REALLY annoys me? I took this drug three hours ago. 

Now it's Friday night, so it doesn't really matter too much if I get to bed late (I cannot, cannot sleep when this is happening). But during the work week? Yeah, sort of matters. And it had to be taken "before bed" so I'm sort of screwed. You have to drink milk with it--I drink tons, which really isn't great for me, because it clogs up everything and I just don't prefer it. And STILL this happens. If I had long nails I'd probably be bleeding. 

It also makes me super tired, which isn't good for anything else, because all I want to do when I go home is sleep. Not cool when I have ballet, parish council, choir, and, oh yeah--work. 

So I will call the powers that be on Monday. My next appointment isn't for three weeks, so I want to deal with this NOW. 

OK Medical Rant done. :) 

PSA: Vaccines!

OK everyone, listen up:

Please, for the love of all mankind, especially us immuno-suppressed ones: 

GET A FLU SHOT. 

Please? For you, the flu might be a pain. But for someone with a suppressed immune system, it can be horrible. The flu kills kids and adults every year--normal kids and adults. 

I work in an office with 6 other people. If one of them gets sick, then all of us are exposed to it, but they can probably handle it better than I can. I don't want to miss weeks of work and have to stay in the Resort because someone didn't get a flu shot!

This applies to other vaccines, too (except for HPV, which isn't transferrable in any way other than---sex). Please, please, please get yourself and your kids vaccinated. I know this is a hot topic, but "herd immunity" is not something I am prepared to take lightly. Kids might be fine getting measles, mumps, chicken pox. It can wreak havoc on others (like chicken pox in adults). 

Plenty of people are immuno-compromised, and you probably don't know it. People who have had transplants, who are getting chemo, etc. are all in this category. We can try our best to avoid large crowds of people and reduce our chances of getting sick. But we do have to work and be out Amongst You the rest of the time. 

So please, get vaccinated. You don't want the flu, do you? 

And another thing...

We're supposed to get snow on Monday. 

That's right. Snow. 

On October 27. 

Not that this is unusual- when I was a kid, we would often have some sort of cold weather warning for Halloween. But it hasn't happened in a few years. 

ARGH!!!

I hate the bionic ear right now. 

HATE IT. 

I was at work, minding my business, and then, around 10:00, I hear...

the beep. 

Yes, the beep that alerts me to the fact that the current battery has about 15 minutes of life left in it before I am completely dependent on the 25% hearing that's left in my right ear for all sound. 

Yeehaw. 

Normally, I would just replace the battery. But the other battery, for some reason, has decided Not To Charge anymore. So I have one decent battery. Which is now charging beside me--at home. 

Sigh.