Transplant Myth Busting #1: Only Rich People Get Transplants

Fall near my transplant center

Social media can be a den of vipers, as the Bible says.

But it can also be a great place to correct myths, evangelize, and truth-tell.

Last night, a friend of mine on Twitter directed my attention to a thread (by a doctor, no less, sigh) talking about how only the “wealthy” get transplants. She (my friend) was wondering if this was actually true.

It is not, and I did a short thread dealing with the issues she talked about, but I thought it deserved longer (and slightly more permanent) treatment, so, here we go! Time to myth bust.

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Transplants are expensive. It’s true. It’s not just the cost of the surgery, the hospitalization, and the rehab, it’s also the cost of the medications that one must take in perpetuity. That’s why, when you’re first being worked up for possible transplant listing, an insurance check is run. What that means is that your policy is looked at and its coverage limits, etc. are determined. Back in the day when I got mine, my policies (they were different as I went through the process) had a cap of a few million. (Yes, a few million.) That covered the surgery, the hospital stay, the rehab, meds, and also some of the relocation costs, because a lot of people have to relocate to their center for a few months if they don’t live nearby. I did not have to do that, a thing for which I am eternally grateful. So no, I didn’t use all of the cap for my surgery and recovery. But it was there.

The medications are key to transplant success. If you don’t have them, you will die. Ciao, adios, kaput, end of story, Elvis has left the building. You get the idea. So you either must have insurance coverage for them, or you have to be eligible for the low-cost co pay cards that drug companies offer.

The hospital doesn’t run this step just to say, “well, sucker, you don’t have good insurance? TOUGH LUCK!” They do it to get an idea of what you have, but also to get you help if you need it.

Medicare covers transplants, as does Medicaid. So the idea that “only rich people” get transplants isn’t true on its face.

But yes, the hospital has to know that the patient can access their medications, otherwise the transplant isn’t going to work. Before I was discharged after my transplant, the transplant pharmacist had my parents bring in all the medications we’d gotten from our local pharmacy so she could double check that everything was correct. It’s imperative.

But even if we stripped away all the monetary things—let’s say we had the magical Medicare for All that some parts of the left talk about—that doesn’t mean that everyone would get listed. Why?

I’ll tell you.

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To be a good candidate for transplant, you have to check a lot of boxes. You have to be sick enough to need the surgery, but strong enough to survive it. You have to be cognitively capable of understanding when to take all the medications, what symptoms to report, how to take the medications, and why you need to take them. You have to have at least one caretaker during the initial process, because you won’t be able to do things on your own for a bit. (I couldn't drive for three months post-transplant.) You have to have appropriate housing (ie, nothing from Hoarders). You have to have reliable transportation so you can get to and from appointments and tests.

And you have to have a record of giving a crap about yourself.

I’ve told this story many times, but it’s worth rehashing here. At my last CF clinic appointment before transplant, I was sitting in the waiting room next to a girl about my age (early 20s). She had a baby with her. She told me she had two other children and she lived with her mother. She was on IV antibiotics, but she was sort of haphazardly doing them. And then she told me that she knew that she wasn’t doing well and that she needed to find a better living situation and take care of herself better, but that she was “going to die soon anyway” and so what did it matter?

My heart broke for her—it still does. I often wonder what happened to her. She knew that she wasn’t taking care of herself, she knew it was going to lead to nowhere good, but she didn’t change it.

She is the type of person who is not eligible for transplant. You have to be willing to change things if they need changing. You have to be willing to fight for yourself. I don’t know if she was just tired by all of it—because we all have those days—or what. But she was pushing her body to its event horizon very quickly.

I also remember neighbors I used to have, senior citizens who were husband and wife. The husband had quadruple bypass surgery. His wife, a compulsive smoker, continued to smoke even after his surgery. She would laugh if off as we talked outside—I tried not to get too close either, because the smoke wasn’t good for me, but I didn’t want to be rude.

Transplant doesn’t just affect the patient, it affects the families. You can’t have certain pets in the house (ie, birds). No one in the house can smoke. Certain foods are off-limits for transplant patients (ie, grapefruit). The family has to be willing to support the patient through the process. You can be as wealthy as Scrooge, but if you don’t have someone to help you through it, that money is not going to help you get listed. There’s a psycho-social evaluation component to listing as well.

And even when all the stars align, that still doesn’t mean you will get a transplant.

My friend Sage died waiting. I have no idea why she died, and I didn’t. I have no idea why I’m here today, other than God must still have something for me to do. I got damn lucky and all the stars aligned.

There are not enough organ donors to meet the demand for them. This is especially true among minority populations. If you want to increase transplant equity, this is great place to start, and UNOS is already doing good work here, but it needs amplified.

It’s very easy to say, “Oh, it’s all about money” but it’s not. It’s easy to say many things about transplant that aren’t true.

But transplant medicine is the most intense high-wire act in all of medicine. Even when all the stars are aligned, it’s not guaranteed to happen. That’s the truth.

Deo Gratias!

On the Solemnity of the Sacred Heart of Jesus, it is so appropriate that one of the worst SCOTUS decisions in history is overturned, joining Dred Scot and Plessy on the ash heap of history.

Every since I was old enough to know what abortion was, I—and so many others—have prayed and worked for today. This is a victory for the pro-life movement, and I don’t think it’s a bad thing at all to take today and celebrate and give thanks for this.

I am happy on a more personal level as well. If you’ve read my book, you know that I have often had people tell me that people with genetic diseases are not “worthy” of living, because our lives are too hard or we suffer.

Ninety-six percent of babies who are discovered to have CF in utero are aborted.

Today, that number will begin to decrease, and more people like me will have a chance at life.

It’s important to note that Dobbs doesn’t make abortion illegal in the United States. Instead, it throws the matter back to the states (which is where it should have been all the time.). Every state can determine their own abortion laws.

This is not the end of the pro-life movement. In the words of Winston Churchill, “It is the end of the beginning.”

We know that there is work to do to change perceptions. We know that more pro-family legislation is needed, and we need to continue to support the work of maternity/crisis pregnancy homes, pro-life charities, and other supportive networks.

If you want to contact your state legislators about this, be sure to do it politely (always, please, especially if you’re calling them).Let them know that you support legislation that helps the vulnerable. See what your state already has and then work to support it, financially, materially, or with your time. I’ll be compiling a list of resources later, but you can always start with the Sisters of Life, who do such great work in the US and Canada.

And let’s stop talking about how children are barriers to our lives, OK? Let’s stop talking about how women have “fewer rights” then men. Women, it’s time for us to stop believing the lies that the sexual revolution taught us. Sex is not free. Having sex with multiple partners is not liberating. Let’s reject this mindset for the lie it is. Let’s teach our daughters that. Let’s not continue to perpetuate a lie—which is really a malicious, twisted lie—that sexual freedom is a good thing, that we are “entitled” to do whatever we want, when we want it. That’s a perversion of our freedom.

There are certainly times when women find themselves in situations that they didn’t expect. The pro-life movement is there for them. We need to champion life in all its stages, and Dobbs gives us the framework to start doing that legislatively—but it also gives us the freedom to start doing more outside of the statehouses, to step up our advocacy and demonstrate that it’s truth that sets us free.

Women deserve better than abortion. Children deserve better than abortion. We all deserve better than a culture that takes innocent lives and treats them like garbage, and cloaks its satanic mission in words like “care” or “health decisions” or “choice”.

Today is a victory for life.

Let’s celebrate it, and then continue our work.

(NOTE: normally, I let the combox be totally open. But I will delete any comments that have bad language on this post, OK? I would do that anyway, but….just a reminder.)

Seven Quick Takes: Advent, History, Radio Show, and the Only Movie You Need!

-1-

Heigh ho, heigh ho! Welcome back to Seven Quick Takes.

We’ll start this week with….Patty. :) Per usual!

She has recently really gotten into baby dolls (these are all her sister Bridget’s) and I love watching her play little mama with them.

Also, Patty turns 16 months old tomorrow! Here’s a flashback photo from a year ago.

-II-

Advent is coming! Advent is coming!

May I suggest that, if you are looking for an Advent devotional, that you take a look at Take Up & Read’s? It’s called The Holy Way and a lot of love and careful attention went into this book! We’d love to have you spend Advent with us. You can order your copy now.

-III-

I’m going to be on Al Kresta’s radio show on Tuesday to talk about my book and All Souls’ Day! I will post the link when it’s up, but if you have Catholic radio in your area, check to see if Al’s show is aired where you are!

-IV-

Continuing down the list, history!

Well not really history, civics.

Basically these days I use my Political Science degree to teach people civics on the internet. :-p

Today’s lesson is: how a bill becomes a law in the US Congress.

It’s introduced in either the House or the Senate. The house it’s introduced in has to pass it. After they pass it, it goes to the other house. If it’s not passed, it’s dead. If it is passed, the president can sign it or veto it. If he vetoes it, then Congress can try to override the veto. If they don’t override it, bill’s dead. Can be introduced next session.

Veto override requires a two-thirds majority of members present.

To just pass something, you need a majority. That’s it.

There’s a lot of talk about how “well you really need 60 in the senate these days.”

That is, to put not too fine a point on it, crap. Yes, the U.S.. Senate has the filibuster. Yes, it requires 60 votes to stop a filibuster. But that’s not to pass legislation.

Capisce? Do we get it? Please don’t say you need 60 votes to pass a bill in the Senate, because you don’t.

-V-

So, my dad and I, after many sojourns in ERs where we have to entertain ourselves, came up with the list of Essential Movies that Explain Life. What that means is, we draw on them heavily in regular life because they capture some truth or bon mot that applies to multiple situations.

They are:

1) The Wizard of Oz : “Some people without brains do an awful lot of talking!” "Well, being a Good Christian Woman I can’t say it!” “What a world, what a world!”

2) The 1995 Pride and Prejudice. The only version. If you know, you know. “You do not make allowances for differences of situation and temper.” “The more I see of the world, the more I am dissatisfied with it.” “You have delighted us long enough.” “What do we live for, but to make sport for our neighbors, and laugh at them in our turn?”

3) Mr. Mom. “I can’t believe it!” “I can’t believe it!” “You’re doing it wrong!” “No, lie to him. He likes it.” “Whatever it takes.” "

4) A Christmas Story: “It could be anything!” “Don’t you feel terrible? Don’t you feel remorse for what you have done?” “

Now, I’d add two other things to this—Christmas Vacation has gotten a lot of us during the pandemic, because “Whatever Russ, whatever.” And also Home Alone gives us this great gem:

via GIPHY

-VI-

Is there anywhere else int he world that does not trick or treat on Halloween? Or is this a uniquely central Ohio/Ohio thing? I as talking to Patty’s mom the other day and she said that she couldn’t believe we had trick or treat not on Halloween. I never really thought about it because that’s just how we do it here, but yes, it’s….weird.

-VII-

And I have begun writing out my Christmas cards. Yes, I begin Christmas prep early!

Why Medicare for All Is a Terrible Idea

OK, I know, some of you don’t like political posts.

And this is political, in the sense that, all the candidates who are pushing “Medicare for All” are not candidates that should be voted for, amen.

But, really, this is a look at how Medicare “works”—as someone who is currently going through the incredibly difficult work of selecting a plan.

Here’s why it’s hard:

1. I take a medication that must be the brand medication. I cannot take the generic because we can’t get what’s called a “therapeutic level” with it. The drug in question? Prograf. The drug that basically keeps me alive. So, I have to take brand name Prograf, which is expensive.

2. I see all the normal doctors people see—dentist, eye doctor, etc. But I also see special specialists. Meaning, doctors that are not normal run of the mill doctors.

3. I also see these doctors in two separate hospital systems—The Resort, and OSU (Ohio State).

So, we must find a plan that covers my meds, my doctors, and my hospitals.

Under private insurance, this was not hard at all. I just typed in names and meds, saw they were covered, signed up. Done. It took less than a half hour.

Private insurance did not like to pay for prograf, but it did. And if it didn’t, then the manufacturer had a Prograf saver card I could use to reduce the out of pocket costs.

Now, I have Medicare.

And here are all the problems.

1. There are plans that refuse to cover prograf. It’s not even in their formulary. It just says, “not covered.” Even though this med is basically what keeps me alive. There are many, many plans who do not cover it in any way, shape, or form.

2. There are plans that cover the med, but not my doctors. As in, one entire group of plans refuses to cover any OSU doctors. OHIO STATE! One of the top-ranked systems in the country!

These are, to put it mildly, big problems.

My dad and I have spent at least three days—as in, hours upon hours!—on the phone with people, looking at plans on line, until our eyes have crossed and our brains have melted.

Because a plan will cover some of these things—but then we’ll see, oh, there’s no out of pocket max. Well, that’s gonna get expensive, quickly.

They’ll cover my endocrinologist, but not my transplant doctor!

They’ll cover doctors, but not meds!

Or meds, but not doctors or hospitals!

Do we see the problem here?

Oh, and to make it even better, Medicaid will cover Prograf. But Medicare plans don’t!

And the copay card? Doesn’t work for Medicare patients. Only private insurance patients—when Prograf was covered by my private insurance!

This is insanity.

They’ll cover things like acupuncture and chiropractic, but not the med that keeps me alive. Not top doctors at top medical facilities. Nah. That’s too hard.

Also, it’s insanely complicated to compare plans. They don’t always list what doctors are covered, or what meds are covered. They don’t mention facilities. They put in stuff like Silver Sneakers—well, goodie, a free gym pass!—but not stuff that is actually life saving and vital!

How about we not cover gym costs, and instead, cover medications that keep people alive?

Oh, and. This is the good part.

Here’s an NYT story on this issue. Medicare will cover transplant meds if the transplant occurred while the person was on Medicare. NOT BEFORE.

This is the biggest piece of insanity I have ever seen. These are drugs that we know work. They are not new therapies, they’re not snake oil. They are proven. And yet, no, I’m sorry, we won’t cover that.

We have presidential candidates saying that this insanely complicated, twisted, insane system should be the one health care provider for the entire nation?

No.

Or, to be spicy, HELL NO.

St. Dominic, the Innkeeper, and Twenty-First Century Preaching

El Greco, St. Dominic in Prayer

There’s a story about St. Dominic that’s familiar to every Dominican, and I think it has important implications for us today.

Here’s how the Nashville Dominicans tell the story on their website:

Two years later a diplomatic trip brought Dominic into the Albi region of Southern France. A strong zeal for the salvation of souls was enkindled when the young canon encountered an innkeeper who was steeped in the errors of the Catharists, a heresy which threatened the region. Although other religious had been commissioned to preach in the region, little progress had been made. After a long night of intense discussion, the light of truth prevailed and the innkeeper returned to the practice of the faith.

So let’s break this down. Think of a hotel. Imagine you’re in the lobby, getting something to drink before you go to bed, and you start making small talk with the desk clerk. You discover that he’s an agnostic.

You have a few options:

Don’t say anything. Just smile and say good night, but mentally pray for him.

Share that you’re Catholic. Don’t go any father.

Tell him that he’s going to Hell.

Say that you’re Catholic and spend the rest of the night trying to browbeat him into submission!

What did St. Dominic do? He talked to the innkeeper. All night. You can imagine that it wasn’t full of highly charged statements (like, hey, you’re going to Hell! Good night!) or polemics. It was probably logical—because we Dominicans love study—and it was probably methodical. And it was also probably gentle. I doubt the innkeeper would’ve stayed up all night if St. Dominic was banging him over the head with proofs!

There’s nothing wrong with a good discussion, including one that gets a little exciting.

My siblings and I are all half-Italian. When we have discussions, we get loud. We get boisterous. We use our hands! For people new to way we converse, you can think we’re arguing. (Growing up, our mother, who is not Italian, often told us to stop arguing. “We’re not arguing! We’re talking!”) St. Dominic was Spanish, so I wonder if he used his hands, too. Maybe!

But there’s a distinction between passionate arguing and getting personal. And on St. Dominic’s Feast Day, that’s what I want to talk about.

St. Dominic (detail) from “Christ Mocked with the Virgin and St. Dominic,” Fra Angelico

One of the mottos of the Dominican order is “Veritas”—truth. We love truth. We live to spread the truth of the Gospel all over the world! And that’s part of the reason we study, so that we can know what the truth is. Truth isn’t about what you think is true, or a “personal truth". (for example, children believe that Santa Claus, the Tooth Fairy, and the Easter Bunny exist. We could call that their “personal truths.” )

Truth is verifiable. Truth can be known. Sometimes, yes, there is mystery! We will never understand everything—and we’re not meant to. Some things are just beyond our reach on this earth. But we know the truth of faith because it’s able to be studied. It’s able to be seen. We believe in the truth of Jesus Christ. At Mass every week, we say the “credo”—”I believe”. This isn’t what just I believe, or what you believe, or what the pope beliefs, or what Fr. Patrick up on the altar believes. It’s what we have always believed, as a people, a family of faith.

If you are Catholic, you have to know what you believe, and why you believe it—and you have to assent to it. You can’t just say, well, that’s fine for you, but I don’t believe in Transubstantiation. (You would be….wrong!) I don’t believe in the Church’s definition of marriage. I don’t believe in Hell. Etc.

Truth is truth whether you believe in it or not. People believed the earth was flat—but it wasn’t. People believed that slaves weren’t people—but they were. People believe that unborn babies aren’t people—but they are. See how this goes?

It goes without saying that the truth needs to be spread far and wide. That’s part of what Dominicans do.

But, the question is “how to do it.” As the Wicked Witch of the West said, “These things must be handled delicately.” We can’t be too nice that we deny people the truth—because the truth sets them free, and truth is the best thing you can give someone! But we also can’t be so awful and hard-core that we turn people away from hearing the truth and listening to it.

Let’s take a story from the Bible. It’s one that’s familiar to everyone—the story of the woman caught in adultery. I’m going to quote it here, so we can all have it freshly before us:

John 8:3-11

The scribes and the Pharisees brought a woman who had been caught in adultery, and placing her in their midst they said to him, “Teacher, this woman has been caught in the act of adultery. Now in the law Moses commanded us to stone such. What do you say?” This they said to test him, that they might have some charge to bring against him. Jesus bent down and wrote with his finger on the ground. And as they continued to ask him, he stood up and said to them, “Let him who is without sin among you be the first to cast a stone at her.” And once more he bent down and wrote with his finger on the ground. But when they heard it, they went away, one by one, beginning with the eldest, and Jesus was left alone with the woman standing before him. Jesus looked up and said to her, “Woman, where are they? Has no one condemned you?” She said, “No one, Lord.” And Jesus said, “Neither do I condemn you; go, and do not sin again.”

Do not sin again. That’s the crux, really. We are all sinners. Every single one of us. I am, you are, everyone. None of us is without sin. But Jesus doesn’t say to the woman, “Oh, what you did is fine. Go ahead, go home, it’s all good.” He said, I don’t condemn you. But don’t sin again. That’s what happens when we go to confession—we have to promise to try not to sin again. We can’t just think, oh, I can do what I want, because confession!

Jesus loves us more than we can possibly imagine. And because he does, he doesn’t want us to keep messing up. It makes him sad! Do parents like it when their kids make bad choices? No! But are they angry? Maybe. Are they disappointed and sad? I think this is probably more likely. (I mean, they might be angry at first. But I think then it becomes more sad/disappointed.)

When we discuss heated issues in the twenty-first century, we are not good about being gentle about it, like Jesus is here. Now, yes, Jesus also turned over tables in the temple. Sometimes we can be righteously angry. I get righteously angry whenever I talk about disabilities or abortion. That’s my thing. But if I slip and start calling people names, or want to incite violence against them, I am sinning.

We can be preachers of the word. We have to be, both preachers of the word and doers of it. We have to live the life of Christ. Sometimes that means standing up for people. Sometimes that means living a quiet life of witness. Sometimes it means both!

If you want to make your point, if you want to convert people, you aren’t going to do it, usually, by violence or hatred or name calling. We need to stop doing that. We need to do it like St. Dominic did it—gently, with facts, with truth, and then….step back. See how it goes. Conversions aren’t instantaneously. St. Dominic famously cried, “Oh Lord, what will become of sinners?” He cared about them. He didn’t just want to score a point like in a college debate match. He didn’t want to just win. He wanted the other person to see the truth because it would save them.

Politics in America has always been nasty (see the Election of 1800!). But we must stop seeing each other as enemies across a divide. We have to state our position, but also realize that we can be friends with people who don’t vote the way we do. In fact, we are required to love them.

I know things get heated in the public realm. I worked in politics for 10 years. I saw it, up close and personal. We cannot want to kill our opponents, guys. We can’t approve the shooting of congressmen and women because the victim disagreed with us! What kind of people will we be then?

A story was told to me by the first legislative aide I worked with, who had been in the senate a long time. She said that senators used to argue like crazy on the floor, and then go out to dinner together. They were friends with each other. That was becoming rarer and rarer

Christianity isn’t a religion for wimps. Jesus doesn’t ask us to be a doormat. He asks us—and St. Dominic shows us how—to preach the truth, to live the truth with our lives, to pray for our enemies. We can have discussions—even loud Italian ones! We can be passionate! I’ve always been passionate when talking about the Church.

But there’s a fine line between being passionate, and being so whipped up into a frenzy that you can’t see the human being on the other side.

St. Dominic saw the humanity in the people he met. That’s what drove him to preach—his concern for them and his love for Christ.

Does the same thing compel us?

Invisible Disabilities and the Workforce

Fun medical equipment from the 1980s....

Take a look at the picture of me on the sidebar. (If you're reading this in email, click through.) 

What do you see?

I'm not asking for an assessment of my physical attractiveness, or lack thereof. But if you just looked at that picture,  you would think, yes. She looks like a pretty typical 30ish woman.

This is what you'd be missing: 

*You can't see my cochlear implant, tucked behind my left ear. I don't wear any hearing devices in my right ear, and there's only about 20% natural hearing left there. 

*The scar on my forehead? You can see that, but you probably don't know it's from a skin cancer removal. You also can't see the bald patch on the back of my head, from another one. Skin cancer is 10x more common in post-transplant people, because of our immunosuppression. It's not because I'm fair. (And I'm religious about sun protection, anyway). 

*You can't see that I've got about 52% lung function--which for me is good. That's great! But for normal people, if it's lower than 70%, there's probably an issue. For me, 70% is a dream I will never see again, after hitting it in 1997. So imagine working without one lung. That's me all the time--and that's GREAT. I LOVE IT! 

*You can't see the burn on my right arm, which is left over from transplant surgery. Third degree burn. Skin graft. It's rendered my right arm usable--thank God I still have it!--but it doesn't have complete function like it used to. (Knitting probably helps, though, in making it stronger.) The skin is very, very delicate. It tears easily. So I can't do a lot of manual labor with this arm--and this is my dominant arm. If you were looking at me, you'd notice, but you wouldn't have all that information. 

*Oh, and I'm anemic. I always have been. Part of the paleness. :) But that affects my stamina, too. I'm used to it, now, but there are times when I need red meat and sleep--Moreso than the average bear.

I'm telling you all this because invisible disabilities have been in the news lately, as a part of the new Medicaid standards the administration is considering. I look pretty "able bodied", but I'm not--as any physical exam would show. I can't use a telephone--I use FaceTime, but not a real phone. If you call me, I can't understand you. You will sound like Charlie Brown's teacher. Being immunocompromised means if I get sick, there could be a hospital stay in my future. You get the flu, you stay home. I get the flu, I can end up in the hospital. I need to be more circumspect about where I go, especially during flu season. And honestly, I need to take care of my body. That means giving it enough sleep, among other things.  

So, looking at me, you can't see these issues. But they're there. And when you compare me to an average 35 year old woman, it becomes apparent. Invisible disabilities are real. Ask anyone who has arthritis, for example. Or diabetes. Or epilepsy (which I had as a kid). They're not to be taken lightly. Just because someone looks able-bodied, doesn't mean she is able-bodied. 

As a society, we need to be cognizant of that. I'm not making policy suggestions, here, but we need to be aware that there are serious disabilities that people cannot see, and that can impact ability to work. For example, I look fine. But you don't want me to be your receptionist, or ask me to carry heavy things or fix machinery on a regular (or even semi-regular) basis. And of course, I see many more doctors than average people. I see my transplant doctor every four months--I see my ENT every four months. I see my dermatologist very frequently, and I have days where I'm out having Mohs surgery, or having things removed--that takes time. I can have surgeries scheduled at the drop of a hat. Any employers who hires me needs to be aware of those things, and needs to be flexible about them. If they're not, then I'm in trouble. And my employer won't be happy, no matter how great my work is, or how intelligent I am. Without that understanding and flexibility, a job will be hard for both of us. 

I want to provide this as food for thought, when you read about invisible disabilities, or work requirements. It's not wanting to work--it's things that make working difficult, for both employer and employee. 

*

Having said that, though, I don't think a person with a disability or a chronic illness should automatically go the SSDI/Medicaid route. Here's why. 

I think that being "normal", as much as you can, is good for self-image, self-esteem, and general mental health. I know that one of my biggest drivers growing up was that I was not going to be babied. I was going to be normal. That meant, doing my homework. Going to school. Taking exams. Etc. If I needed accommodation, I asked for it, but it was low-key. I finished high school. I went to college. And after college, I got a job. 

I knew that I would need a job with good insurance. So yes, if you have medical issues, that means you have to consider jobs with good benefits. It doesn't mean you can go off and join a non-profit that doesn't provide good medical coverage, OK? You have to be reasonable and logical. I wrote more about this here. 

I do not think it is a good idea for people with CF to sit around at home and bewail their state. First off, that would have driven me insane. Really. When I had to be home for four months post-transplant, after about month three, I was going stir-crazy. I have to have things to do. 

But--there comes a time, when yes, you can't work anymore. This happened with my friend Sage. When she was listed for transplant, she had to leave her job and apply for SSDI. That does happen. It's part of life. But I don't think--and we talked about this often, so I know we agreed here--that she wouldn't wanted to sit at home, either. 

Maybe you do. OK. But my feeling is, if you can contribute, contribute. BUT that requires having an employer that is flexible and that is willing to work with you. And I had that--until I didn't. Once that goes away, then life can get very difficult, and then it might be time for SSDI/Medicaid/whatever. If that time comes, then go for it. That's when people on the government side need to realize that we might look pretty able-bodied. But we're not. 

And also, when it comes to the Medicaid/SSDI system, a lot of the time, they're not talking disability like I have a disability. They're talking about worker's comp sort of stuff. Like, back problems. Problems with limbs, or standing for eight hours, and movement. The system isn't really designed for people who have chronic issues that aren't movement/skeletally based.  That is frustrating, because what I have is what I have. I'm never going to get my hearing back. My lung function may go a little higher, but this is pretty much as good as it gets. I'm never going to get better skin on my skin graft. So the government side of this needs to realize that some disabilities don't get better. They might stay stable--or they might radically get worse--but "better" is not going to happen.  

I know that before I had to deal with all this, I had no idea that any of this was true. So I think it's worth it to share these thoughts with people, so you can realize that when government talks about "disability", there are levels, and there are degrees. 

Seven Quick Takes

I. 

I haven't done one of these in awhile, but I thought, since I had a lot of linkage to share, I'd bring it back! :) 

II. 

If you follow me on Instagram, you know I've been so excited about the launch of Lara Casey's Cultivate book! I'm so excited, in fact, that I'll be giving away a copy next month! So watch for details! Here is my preview of the book (my real review goes up soon!).  If you can't wait for the giveaway, you can get your copy on Amazon here or at your local bookstore!

III. 

Since we're talking Health Care (again), I thought I'd share some links on a series I wrote earlier this year: Parts one, two, and three. I might have something else about the Medicaid stuff next week. I know some of you enjoy my policy wonk adventures, but not all of you, so I try to keep it to a minimum. :) 

Essentially, what it comes down to is this--if we want to expand something--or even create something-- we have to make it solvent. I'm reading the Chernow biography of Alexander Hamilton right now (the one that inspired Hamilton, although the more I read the book, the more I am annoyed at the liberties the musical took....), and Hamilton wrote something I found prescient: "Creation of debt should always be accompanied by the means of extinguishment." 

Or, in other words--how are we going to pay for this? 

IV. 

As we're heading into the Fourth of July weekend, here are some of my favorite book/movie suggestions for you. They either talk about the revolutionary war, or revolve around July 4th: 

The Killer Angels, by Michael Shaara, and the movie, Gettysburg, which is based on the novel. 

Laurie Halse Anderson's Seeds of America trilogy: Chains, Forge, Ashes

The movie 1776 (the musical. It's great! Mr. Feeney is John Adams!) 

The miniseries John Adams, and the David McCullough bio upon which it's based. Also McCullough's 1776, which is amazing. 

V. 

Also, read the declaration, and the preamble to the Constitution: 

We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.

(And also realize the difference between the two--please?) 

VI. 

If you love candles, but have a hard time finding a good summer scent, then you need this candle from the Laurel Mercantile Co. (It's run by Erin and Ben Napier, of HGTV's Home Town.) It is a divine floral smell that smells just like being outside in the spring and summer

Not only does it smell great, but it also burns very evenly and cleanly--both big bonuses. And, in fitting with the American theme of this post, it's made in Mississippi, so go American manufacturing! (Which was also something Alexander Hamilton supported. He wrote an entire paper on manufacturing and the sort of things he thought we should make.) 

VII. 

Finally....

I've been seeing a lot of "lose" vs. "loose" on the Internet this week. Y'all know the difference, right? :-p 

How to successfully contact your elected representatives

(Or, Please be short and sweet)

Some of you long-time readers will remember that I worked for the state and federal government for more than a decade. In that time, I did a good share of direct work with constituents--meaning I answered the phones, read their mail, and saw the emails that poured into the office from all directions. I learned, very quickly, that some people have no idea how to properly communicate with their congressmen/women or state representatives.

In the spirit of Civic Education, I offer:

How to Communicate Well With Your Elected Representatives

1) Be polite. That's the most important. The person answering the phone is not the state representative himself. It's an aide. No matter how angry you are, or how passionate you feel, I guarantee you that the person answering the phone did not cause all your problems and is in no way responsible for them. BE NICE TO THIS PERSON. 

2) These offices are not well-staffed, especially at the state level. At the congressional level, yes, there is more staff--because there are D.C. and district offices. But even then, there are not thirty people all manning phones who have endless amounts of time to listen to constituent spiels.

So please keep your speech SHORT. As in, one succinct paragraph. Do not get on the phone with a script from your Advocacy Agency of Choice that's multiple paragraphs--especially multiple long paragraphs. The aide doesn't have time to listen to all that and she will not write everything you say down. She will probably write something like, "Against pigeon welfare bill. Says pigeon hunting is fun" on her notepad, no matter how many minutes Mr. X is talking about the joy of hunting pigeons. 

(I honestly don't know why advocacy groups give these hugely long speeches to their supporters. They're not the best way to make your case. The poor aide just starts to tune out or freak out that the person won't stop talking.) 

3) Please make it clear what you're talking about. Don't just get on the phone and start rambling. Say, "I'm a constituent of Senator Y (maybe add where you're from, which will alert the aide that yes, you have a higher change of being a real constituent), and I am against/for Legislation whatever, and this is why. Thank you." That's it! That's all you need to say!

(Yes, people call offices of representatives that do not live in that area. I don't know why. This bugs me. If you don't live in Speaker Ryan's district, for example, then why are you calling him? Call your own dang representative! Just because he's the Speaker of the House doesn't mean that his poor aides want to hear from the entire country!)  

4) If you really want to say all five paragraphs, or you have pages and pages and pages of things to say on the Joys of Pigeon Hunting, then send an email or a real letter. Mail that is received on legislative topics is indeed noted. We were always aware of how much mail was being received about legislation. Email. Send a letter. (But still be polite!)

5) Actually talk to them about something they can help you with. When I interned for my congressman, I was in one of his district offices. People would call to talk about the city's trash collection. 

That's not a federal problem. Call the city. Not us. 

In summary: Be Polite. Be Succinct. Call your actual representative/congressperson/senator. If you have a lot to say, email/use the USPS. 

Insurance/ACA/ Health Care Part III: Thoughts and Suggestions

So, in the meantime, what can we do about health care/insurance costs, and the like? Here's some suggestions: 

1) Realize that even in a hospital, you are the consumer. If you don't want a certain test run, you don't have to have it run! If you don't want to go to a certain hospital, you don't have to go there! A few weeks ago I had to tell ambulance guys (I'm fine, btw) to take me to Children's instead of the nearest hospital. They looked at me oddly. "It's because of my transplant," I said. When we got to Children's, and one of the nurses recognized me immediately, the EMT realized, Oh, yes, she knows what she's talking about! 

You do not have to do everything a doctor recommends. You really don't. I know, we don't want to be difficult. We assume the doctors know what they're talking about. And yes, most of the time, they do! But not always. 

(Caveat here: If you don't know anything about your condition, then I don't recommend this pathway. It's only after, say, 34 years of messing with my body that I know what most tests are being run for, and what their purposes are. If I don't know, I ask. If a doctor suggests a test to me that I don't think is necessary, we have a "conversation". Or if it's contraindicated for me, it doesn't happen. Don't be in the ER and Googling random tests. That's annoying.) 

2) Know Your Body. Know what you're taking, what you're allergic to, what tests you may not be able to have. Use the Health app on your iPhone! Why know all this? Because hospitals and doctors don't always know. They don't check the chart all the time! You must advocate for yourself. That's not really a suggestion. It's something you have to do. 

I was at a Big Adult Hospital once and the nurses would come in and say things like, "We're going to do an MRI." Me: "No, you're not. I have a magnet in my head. Contraindicated." 

"We're going to give you a PICC line." "No you're not. There's no more spots for them." 

Etc. Had they read my chart? No idea. But I--and my parents, who took turns being with me--knew enough about me to say, "Nope. This isn't happening." 

If I hadn't known, or hadn't been able to speak up, then things would've been done that would've been reallllly bad. 

3) Almost all--if not all--hospitals have financial aid departments. Call them. Email them. Fax them. Whatever. Talk to them. I currently have a stack of bills from the resort next to me. I will fill out the application for financial aid, and I will send these to the financial aid office at Children's, and once they see that my "paycheck is a disgrace to paychecks", I will probably not have to pay anything, or a severely reduced amount. 

Is this a pain? Yes. Have my parents and I dealt with many, many financial officers and insurance people? Yes. Does it take time? Yes. BUT IT CAN BE DONE. DO IT. It's worth it.

4) Do not mistake "insurance" for "health care." Not the same! 

5) It is important that people with pre-existing conditions, that need health insurance, can get it. It is important to remove the work connection to insurance. But one of the big parts of the ACA is the "insurance marketplace" idea, and the idea that the care would be affordable, because you could choose what worked for you and your budget. 

But right now, there is no "marketplace" if an entire state has only one insurance company from which to choose. That completely defeats the purpose of a free market, in which competition is what is needed to keep prices low and provide consumer choice. If the choices are Insurance Company X, and Medicare/ Medicaid, that's not a choice for the average bear. 

Different people have different insurance needs. I use health care incredibly often. My brother is as healthy as a horse and has used an ER once in his entire life. He and I, obviously, do not need the same insurance plans! Thus, when I worked, I chose the most expensive insurance plan. My brother could choose the cheapest one and be OK with that. 

Right now, I have one health insurance option. Thankfully, it covers the Big Things I need. But financially, it's a tough plan, given my co-pays and the premium is crazy.  But I don't have the choice of any other insurer, whereas before, I had three choices. This is a problem, no? Because I cannot make choices about my health care. I have to "choose" the only option available.

The ACA, like many things, might be "good in theory". But in practice, there are definitely things that need fixed, while still keeping key provisions of the law that allow people with complex medical needs to get what they need. 

Thoughts on Insurance and Health Care, Part II: The Government Side

I worked for the state government for 10 years, in various capacities. Before that, I interned in my congressman's office. And in both places, I paid special attention to any health care stuff that was going on. The first budget I worked on in the Senate, I had the good fortune to meet an excellent lobbyist (yes, they exist) who fought to keep the state's Bureau for Children With Medical Handicaps (BCMH) funding alive in what was a very, very, very tight budget.

The State of Ohio has to have a balanced budget. We can't run a deficit. So we can't pass a budget that doesn't add up, and that means that, as great as many programs are, we can't keep them all if the funding isn't there. Fortunately, BCMH was saved, because BCMH works with many families with kids and adults with chronic diseases, like CF. We never had to use BCMH funds, but I know that they were, and are, extremely useful to families who need money to help pay for treatment, equipment, and care. It's a nice safety net and really makes a difference to a lot of families.  

(To me, this is an important part of the pro-life ethos: helping families and adults who have chronic conditions receive good care for said conditions. That's what BCMH does. And right now, in Ohio, they're talking about cutting it again, which irritates me, because it's a program that does a lot of good for small(ish) output. So, back to the crusading we go!)   

Now, like I said, Ohio has to have a balanced budget. The federal government does not.  Hence the "debt clock"    .  (There have been various efforts at a "balanced budget amendment" over the years. Hasn't happened yet.) But that doesn't mean that the government can just make stuff happen--poof! Magic! Being $19 trillion in debt is probably not the best economic policy. And when there isn't enough money, you run into issues like the one we currently have with Social Security--it's not going to be solvent forever. At some point, all the bills come due. 

If you work for a particular member of Congress or the state legislature, you get lots of phone calls, emails, and letters. Most of these involve wanting the government to do something--and that something usually involves money. Any time you hear the word "free" come out of a politician's mouth, you should laugh. NOTHING is free. Someone is always paying for it. Now, that someone might not be you. But someone is. 

"Free" health care. "Free" college. "Free" preschool. "Free" whatever whatever whatever. 

Someone, somewhere, is paying for that. Let's not debate the ins and outs of whether or not these people should, or types of taxation. Let's just all agree that somewhere, someone is paying for all the "free" things. "No such thing as a free lunch" also applies to everything else. 

*     *     *

One of the things that makes America different from other countries is federalism. (Federalism--the divide of power between state, local, and federal government.) That idea is enshrined in the Constitution and it's something that also makes life....hard, when it comes to spending. 

There is always an underlying argument about the powers of the federal government and what the federal government should do. Really strict interpreters of the Constitution say that the federal government should only do the things listed in Article I, section 8, which includes things like: 

• Maintaining "post roads"--we could probably say road maintenance today. Highways, especially, since they're interstate. 
• Borrowing money
• Regulating foreign trade
• Creating and regulating the lower court system  (as in, everything other than SCOTUS). 
• Declare war, and maintain/provide for the armed forces--there is quite a bit about this in section 8.

(Like it or not, national defense has always been something the federal government has been charged to do. It's a big part of the Constitution. "Provide for the common defense" is part of the preamble. We can argue about what "maintain" means, in concrete terms. But it IS one of the few direct things the government is charged with doing. Ergo, military spending belongs in the federal budget.) 

Now, we can argue all day about what the government should provide for its people--and there are some things the government, at the federal level, just does better. The military comes immediately to mind, as does anything to do with foreign trade and foreign governments. We need a Secretary of State and a Secretary of Defense and a  Secretary of the Treasury. Those are important Cabinet positions that do important work. 

If we, as citizens, want the government to provide something, we have to determine what we would like them to cut in order to pay for something else.  We cannot have everything, it just doesn't work. Everyone who's ever had to balance a checkbook knows this--or any kid who got an allowance. You have $10. You can buy the books, or the My Little Ponies. But not both. (Childhood examples, right there.) 

So, if we want a minimum floor of health care that the government provides--what are we willing to lose? Sesame Street funding? The calls for universal Pre-K? Head Start? Highway maintenance? Disease research? National parks? Foreign aid? Humanities spending? Public health stuff? 

No one wants to be the politician to say "we cannot afford everything", because that politician will lose in his next election. But it's true. We really cannot afford everything. It's just not possible. 

*     *     *

What if we revamped the ACA so it was more like a safety net of health care? 

And by "safety net of health care", we could say: vision. Dental. Basic medical care: primary care guys, basic surgery, urgent care/ER stuff. Maybe specialists and certain types of special care (chemo? etc.) Not Viagra. (Sorry, guys.) Not birth control. (Sorry, ladies!) Not cosmetic surgery, etc. But things that actually are vital to health. To keeping you alive, or fix big issues, like eyesight or hearing, that can really improve people's lives.  

Again, this would be nice. The question is: how do we administer it? How do we make it happen? How do we codify it? (Get it into law) And above all, how do we make it effective, so people aren't waiting years and years to get things they need?  

The easiest thing, in my mind, would be to just call a spade a spade and say it's a tax. It just is, like Social Security. You just pay it. It gets taken out of your paycheck. Stop it with this whole "you have to buy insurance but it's not a tax" thing. It is. It's a tax. Just call it what it is. Say that we're going to have a certain bedrock level of care that's going to be low-cost because everyone is paying for it. 

We do have to get rid of the connection between employment and health insurance. And we have to get rid of the inability for people with actual health problems to get said health insurance, because we're the ones who need it. We also need to fix Social Security Disability so that states cannot deprive certain populations in their states from being eligible for SSDI. 

But all of this is insanely complicated to codify, especially since we have 50 different state laws regarding health insurance mandates and what needs to be covered. The national law generally overrides state law--so while Colorado has "legal" marijuana, technically that's against federal law, and if the feds wanted, they could prosecute the state of Colorado. But, for example, Ohio can ask insurance companies to cover blood sugar monitors for diabetics, but Illinois could say, "nah, we're not going to require that." 

So really, in my mind, we need to get rid of the employment thing first, and cover people who need covered. That has to happen. Then we can talk about what else we want. 

Because American health care--as in, actual care--is quite good. I'm alive because of it. We do lots of crazy things here that are awesome, groundbreaking things. 

What is not awesome is the insurance system. It is, to be kind, a bit insane. 

"Politics is choosing," some one in some political movie said. (I think it was The American President.) We have to choose. What do we want our government to do? What is our government's job? And then go from there--but realizing that nothing is free, and that if we want something, we have to be willing to give up something else.  What are we willing to give up?