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.

Hospital 101

If there’s one thing I’ve learned in 2020, it’s that an awful lot of people don’t know what “hospitalization” actually means.

So I think it’s time to educate y’all!

There are many reasons why a person might be hospitalized. Here are a few reasons I’ve been “in house” (the hospital term for being in the hospital):

• To receive IV antibiotics, and I basically felt fine.

• To receive surgery and recover from it (or, to receive procedures and recover and go home—these are called “23 hour admits.”).

• Because I’ve needed fluids and pain meds around the clock, and regular labs to verify how things are going in my body.

• Because I felt like crap and needed lots of therapies and needed to be carefully watched.

My first admit for CF, in 1993, was one where I felt pretty good. I mean, I played in the playroom, I did wheelchair races in the hallway, I wasn’t lying in bed. But I needed IV therapies, I needed albuterol therapy, and we had to learn about CF. So I was in the hospital to get that intensive training and therapy. But I felt fine. (Well, as fine as I normally felt!)

Later on, I’d be in the hospital for a few days if I needed IV meds. We’d do them, make sure I was tolerating them OK, and then I’d be sent home—on the IV meds. I went to school with an IV in. I went to work with an IV in. I just did the meds when I needed to do them. (Now, apparently, this doesn’t happen as much, which I think is ridiculous, but….I digress.)

“23 hour admits” are basically admits where I might stay longer, but the plan is to get me out that day. This is how we used to do bronchs, or even things like pH probe tests (AWFULLLL). You’re in for a day or so, and then you go home. When I had my cardiac ablation, I was in for a few days, we did the ablation, and I went home soon after. Again, didn’t feel too crappy. On with life.

Sometimes yes, I do feel like crap, and I need to be admitted! But even then, this doesn’t equal DEATH. When I have pancreatitis, 99% of the time I will be admitted, because the “cure” for pancreatitis is pain meds and fluids, along with regular blood draws to check certain enzyme levels which show how the pancreas is doing. Now, being in pain isn’t fun and being hungry isn’t fun, so these aren’t the most fun admits, but generally, they’re not EMERGENCY LEVEL PANIC admits.

Then we get to the last category, which is, “Yes, Emily is very sick and needs to be in the hospital to make sure bad things don’t happen.” These are not fun. The upside is that you get to sleep a lot (or I did anyway.).

Being in the hospital does not mean “WOW SO SICK” just like being in the ICU doesn’t mean “DEATH!” It just means that you need a certain level of nursing care and medication. Whenever I needed cardiac cardioversion (aka the paddles), I was always admitted to the ICU, for monitoring. I felt OK once the pain meds were on board and I had stopped vomiting. :) But I was in the ICU because things could go south and then we’d need to work fast. But I was a pretty easy patient for the nurses on those nights!

Sometimes, yes, the “hospital census” (aka, in patient number) is high. Sometimes you have a lot of people in the hospital, like….during cold and flu season. Hospitalizations tend to go up then, because people get things like pneumonia (which I was hospitalized for a few years ago), or other things like that. Sometimes you might need to be in house but aren’t admitted like the one time my doctor had me deal with pancreatitis at home (which was….weird, but anyway). Sometimes, yes, I have waited in the ER while a room was made ready upstairs.

Some hospitals have observation rooms in or off the ER, and some don’t. These can also be used to “hold” patients until a room on the floor is ready. In January that’s where I stayed when my BGLs were wacky and endo finally….gave me insulin. (Sigh.)

That’s not to say that hospitals can’t be overwhelmed—they can be. (See, OSU ER trip in January where we waited for eight hours which has never happened in my life.)

But what I want you to take away from this is the idea that hospitalizations or ICU usage means a lot of people are at death’s door.

Also remember that people are in hospitals every day for a lot of things (see above), and are in the ICU for a lot of things every day. I’ve done three (four???) ICU stints now and I’d prefer to not to do it again because it’s sort of un-fun but I was in the “census” as an ICU patient, even though I wasn’t really at the level of an ICU person (see cardioversions above!)

All a census number really shows is how many people are in the beds at the moment. That can change based on a lot of factors. For example, NCH used to try to discharge a lot of people before the holidays. If you could go home, they wanted you to go home because who wants to spend Christmas in house? NO ONE, REALLY.

So I hope this gives you a slightly better insight into what a hospitalization can be, if you’ve never really experienced one yourself!

How to be your own health care advocate

Today I’m going to share some hard won wisdom with you!

A friend of mine who also has CF said that we’re the “marines of health care.” And that’s true. We’ve had decades of experience working closely with doctors, hospitals, and medication regimens. And what we think of as obvious is not so obvious to the rest of humanity.

So I’m going to share some tips with you today to help you have better health!

I’m going to start with what is probably the most important tip:

Know your baseline.

What I mean by that is know yourself. How do you normally feel? What’s your general energy level? How much sleep do you normally need—and get—and what do you feel best with? (For me, it’s about nine hours.) How does caffeine affect you? (Or doesn’t it?)

All these things are your baseline—how you normally feel when you’re healthy and everything is chugging along just fine. This even includes stuff like how many times you normally go to the bathroom. (I’m not kidding. For a diabetic, this is important to know—and same with CF.)

You might not have thought about this before, but when you feel “off”, it’s because you’re unconsciously comparing your state to how you normally feel—aka, your baseline.

For example, my right hip tends to bother me on and off. It’s not a big deal, I’m aware of it, it’s been checked out. But if it suddenly became really painful, that would be an anomaly.

I knew that my blood glucose was really high, without even testing it, when I was dropping weight really easily and going to the bathroom more often, and carrying water around with me. Those are all not normal feelings for me.

Knowing how you feel—both physically and emotionally and mentally-is key to judging if something is wrong with you.

I knew that the type of insulin I was on over the summer was wrong for me—on a lot of levels—because I became a really awful person! I was snappy and lost my temper at everything and just hated everything, and this is not me!

So you have to know how you feel normally, so you know how you feel when you’re sick, or when something is off.

All drugs have side effects

The questions are: will you get side effects, and if you do, how bad are they?

People are generally shocked to hear that meds can cause problems. Yes, they can. Heck, water can cause problems if you drink too much of it. If you take too much Tylenol, your kidneys are not gonna be happy with you!

Every medication has side effects. Not every person will experience any, or all, of them.

But a side effect alone is not enough to not take the med.

For example: I used to take cipro for infections. People were always shocked. “Don’t you know that class of meds can cause tendon issues?!” they would cry.

Well, yes, I did (do) know that. But the thing is, I didn’t have a choice. This was what I had to take so, to be honest, I didn’t die.

I lost my hearing because of ototoxic meds. That was a choice we made, so I would not die.

Now, I can’t take cipro or any drugs in its class anymore, because my tendons are starting to get weird with it. I can’t tolerate it anymore. So that means I have fewer options for when I get sick.

I take prednisone daily. I have taken it for 15 years and I will take it until I die. It’s what’s causing all my blood glucose issues. But I can’t not take the pred. I tried to go off it. My body hated it. My joints, in particular, were not really happy. I take nexium, a proton pump inhibitor, even though I know it might cause bone issues and all sorts of other things, but reflux can lead to cancer and rejection, so, again—balancing act. I take immunosuppression meds, because I have to to stay alive, even though it ups my cancer risk by about a factor of ten, especially skin cancer.

Sometimes you start a med, have a rough few days, and then your body adjusts. Pre-transplant, I was on bactrim and cipro and a million other meds every day. At first, this was rough. Eventually, I got used to it.

The lesson here is, if you’re having side effect from a med, and it’s severe, then you need to talk to your doctor about it—especially if you’re having any sort of depression, anxiety, or suicidal ideation. Then, you must call your doctor IMMEDIATELY. This isn’t something to mess around with. Stop the med, talk to the doctor, figure out another plan! There are lots of meds out there! Find what works for you!

You have to be aware of how a med affects you. That goes back to knowing your baseline.

But yes, when you are taking a medication, your body might not like it. That doesn’t mean that it’s a bad drug. It just isn’t working for you, and that’s fine.

If you want to know the side effects of a med, they are easily google-able, or you can ask your pharmacist or your doctor. Every time I go to pick up meds, I get asked if I want to talk to the pharmacist about it. EVERY TIME. So, if you want to know, do that!

You have to know your medical history

You—as in, you yourself—must know your medical history. You must know what drugs you take and why. You must know the dosages. You must know what drugs you cannot take (if any). You have to know what is contraindicated for you.

For example: I can’t have MRIs. I can’t have PICC lines (it’s PICC, not PIC. Peripherally Inserted Central Catheter, folks.), because there aren’t any more spots for them! I can’t have zofran because it makes me vomit. These are all things I have learned and I often have to tell medical professionals these things. Because, they don’t know. Or they haven’t read my chart. (grumble grumble.)

My parents know these things as well. I have my med list and issue list on my phone so I can just whip it out in an ER or a new doctor’s office. It is a good idea to have someone else know your medical history so if you have to go somewhere in an emergency, that person can either say, yes, here’s the deal, or, “here it is on her phone.” (Now, for me, anyone who has read the book knows basically all of my medical history, ha!) I don’t expect people to be able to spout off all of it—except my parents, and they can do it—but I do have friends who know, OK, this is the deal. Especially when I travel with people, I have to tell them things that are relevant, like, me and the sun are not friends. I might have to stay inside for certain hours. I have to check my blood sugar. I might need you to get me juice. Etc.

But you have to be your own advocate. You have to say, I’m sorry, I can’t do that—and why. You have to say, I cannot take that med, or have that procedure, or whatever. (For Catholics, this also includes why you’re not taking birth control pills for contraceptive purposes! Not that you need to go all Humane Vitae on the doctor!)

Sometimes you have to talk doctors off ledges. Sometimes I get a new doctor who doesn’t realize I’m genetically anemic (I have thalassemia minor.) He’ll freak out when he sees my iron counts. But I’ve always been anemic, and we don’t do anything about it. It just is. I’m used to it!

And finally….

Be aware of change

Sometimes you’ll be on a med for awhile and you’ll be fine, and then you’ll notice…issues. That can happen. Sometimes a med builds up in your system and then it causes issues that were not apparent in the beginning. (Ototoxic meds, looking at you!) So if you have a chronic condition, you do need to evaluate. Again, know your baseline. Know what you’re being treated for. Sometimes I have to say, guys, this med isn’t working anymore. And we figure out something else.

Essentially, we all have to be aware of how we normally feel, what we’re taking, why we’re taking it, and our own health history. This enables you to be your own best advocate, which is vitally important.

SQT--A reaaaaaallly interesting week!

Linking up with Kelly!

And it’s gonna be fast quick takes today!

1. OK, so my body does weird things before big events. Jeopardy taping? Pneumonia. I guess for the book release month, my blood sugars will go nuts! But it’s OK, we’ve got them under control now.

2. But to get them under control, Dad and I spent 25 hours at OSU, in the ER/observation, so that was….fun. Best not discussed.

3. So I’m taking two types of insulin right now—a rapid acting one before I eat, and an “intermediate” acting one. These have both made my body much happier! There is sleep! There is energy! My cells rejoice in insulin!

4. But……sigh. OK, doctors’ offices. You must have a system for the hearing impaired to contact you. MyChart doesn’t always work. You must have ways of contact that a patient can do independently! I couldn’t directly contact my doctor’s office last Friday and that led to a really crappy weekend! Today, I can’t select my doctor on MyChart, so I had to contact my FABULOUS transplant coordinator, who will send them numbers that I emailed her! Guys, you can’t think that your lovely “secure system” is going to be the best way for people to get care if they’re hearing impaired! I RAGE ABOUT THIS.

5. STATE OF THE BOOK WICKET is here!

6. Maybe this is the time to show everyone the handy chart about emergency room vs urgent care usage…..

7. OK, that’s it for this week, go read the link at point 5! YAY BOOK! Two weeks to PUB DAY!!!!!!

Seven Quick Takes--The Medical Saga Endeth (we think)

Linking up with Kelly!

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So, here’s a spicy take I wrote this week about Medicare!

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And here’s the follow up:

So, we got the great folks at the CFF involved (they have a team that just looks at insurance stuff). They came to the same conclusion we did: that there really is no plan that covers everything, but that hospitals and doctors and I will make it work. (think Cinderella’s sisters: “I’ll make it fit!”) NCH doesn’t normally have a lot of Medicare people (because, it’s a, um, Children’s hospital), but….”they’ll take it”, says the finance office. (Thank you finance office!)

What I kept hearing from everyone was “well, we haven’t had to deal with this before.” Yes, I am the one that is trail blazing for everyone else. Future generations, YOU ARE WELCOME! I expect copious floral arrangements on my grave and Masses offered after I die. :-p

So, my hospitals are (sort of) covered. My main doctors—as in, the Big Three—are covered. The next issue?

The Prograf (or, THE GRAF).

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The prograf is the med that basically keeps me alive. It keeps my lungs from realizing that they aren’t actually, um, the factory setting. :-D

Now, when I was emailing my nurse about this, she said, “Well, we can always try generic.”

“What do you mean?” quoth I. “Generic doesn’t work for me!”

“Well, the formulation is a lot better now, and the hospital is even considering switching its formulary to the generic,” nurse said.

AH! Well, that would solve problems!

Or….would it????

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So I go to the insurance site. I plug in generic prograf, expecting to see massive cost savings and ease of access!

Hahahaha.

NO.

Generic Prograf is covered—but as a tier 4 med, meaning it’s like, non-preferred, no one wants to use it, and then I see, oh, step therapy may be applied.

Step therapy, for you new people, is when you have to try other drugs first before the company will pay for the med you want.

Yeah, we’re not doing that with the drug that keeps me alive.

So, what we’re going to do is go through prior authoritzation stuff, and we won’t have to pay out the nose, because I qualify for the Medicare Extra Help program (which is a great thing, so kudos there), so we can’t pay more than a certain very low amount.

So.

I have picked a plan. The saga is over. (For this year!)

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In other news, my tree is up, and Susan the Corgi is ready to celebrate….

And I think I’m doing buying gifts. That’s exciting. :)

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I had my first book interview on Wednesday with the delightful Fr. Patrick, O.P. We talked for forty-five minutes about all sorts of good stuff! The interview probably won’t be up until January, but when it is, I’ll let you know! I’ll be posting all media related to the book on the book’s page. . (And pre-order links, to a variety of retaliers, are there are well! Amazon US, Canada, and UK; Barnes and Noble; Indiebound….)

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Just a note about what Kelly wrote about today—how we tell the stories of the disabled.

One of the things I’ve noticed, especially as the practice euthanasia almost on demand rises, is that people don’t really understand life with a disability, or an illness. They think they do. They imagine the horrors of it.

But honestly, that isn’t the way it works.

When I lost my hearing, it was very gradual, over a period of years. It was gradual. Now, if I’d lost it all at once, yes, that would’ve been traumatic, and highly so.

Did I grieve losing my hearing? Um, yes. A lot.

But when it came to CF stuff, it was gradual. I still enjoyed my life, and I do enjoy my life, even with insanely stressful weeks like this week.

Being disabled makes things harder, but it doesn’t make my life worthless or less.

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.

Day In the Life: Yearly Transplant Testing

I thought that I’d give you a little glimpse into a day at clinic, but in order to get the most bang for your reading buck, I chose do chronicle a day where I do yearly testing—as in, clinic, blood draws, X-rays, CT scan, and a DEXA (bone density) screening. So come along with me on Monday’s trip….

6:30 am: Alarm goes off.

7:20 am: Out the door, to the hospital!

It’s not raining! Yay!

The hospital is only 12 miles away form my place, so that makes it easy to get there, but morning rush hour can be a beast. Fortunately, it’s not bad, and I get to the parking garage at 7:45, after being asked for the nth time if I’m a visitor. No, I am a patient. Deep sigh.

Excellent parking!

The hospital has a nature theme, so there are lots of animals and other nature-ish things around. In case you can’t tell, those big green things are acorns.

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

Registration is in the middle of the hospital complex and sometimes it can be a pain. But there was a nice lady behind the desk, the kiosks worked, I had my wrist band, and was on my way to infusion for my first appointment….

Up we go!

The tower building used to be the main hospital—I’ve spent a lot of time here. :) The fourth floor (4AE) where infusion is is where the adult CF floor used to be. It’s where I almost died and it’s where I waited the night my transplant came.

The 4th floor is also home—or was—to the PICU. So yeah, the fourth floor has lots of great memories. (Seriously, some are good. Most are….not.)

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

Since I was early, I got taken back early—yay!—into one of the rooms. Like I said, these used to be patient rooms. Now they’re smaller. Most of infusion is separated by walls and curtained off areas, but since I’m a transplant patient I go into an actual room.

Sometimes infusions last for hours. Really, the reason I go to infusion isn’t to get meds, it’s to get my port accessed for blood draws. So the room has a bed, and the other areas have recliners, if you’re staying. I’m not. This is an in and out thing.

My great nurse comes in and sets things up….

Fortunately no vitamin levels today, so only three tubes. We could not get that out of my veins. So—port!

The blurry part is the strips that have my ID number on them and get attached to various things when the blood goes to the lab.

And yes, everyone must wear PPE—personal protective equipment—when they access the port. Gowns, gloves, masks, and hair nets. It’s like we’re doing surgery here.

So, we’re running ahead of the game, but then my port decides to be dumb, so we have to wrestle with it for ten minutes, but finally it cooperates and we get the blood. Then we flush the line with saline and heparin, and de-access me. Yay!

I am free to go back down to the main floor!

Hallway out to the waiting room.

Doooown we go.

This used to be part of the old ER—the parking lot to the right is where we dropped me off the night of my transplant.

(Bunnies ahead!)

This used to be “main” radiology, and the little hallway you see above used to run between radiology and the ER. This also used to be the main hospital through way—if you went to the end of this hallway you’d reach the main lobby. But I digress!

I’ve been coming to this part of the hospital for twenty-six years. It’s very familiar.

As is this hallway, but now they’re changing it! I don’t know what to do ! :-p

8:40 AM: Chest X-ray

So I have my probably five millionth chest x-ray (that’s a conservative estimate), before which I ran into my post-transplant buddy Amber, who is also going to clinic. It’s always fun to see friends!

So, out of radiology, heading toward clinic, and passing the fish tank and the satellite gift shop.

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

To the elevators, and up to good old fifth floor CF clinic! :) Also been coming through this door for 35 years. :)

9:00 AM: Clinic

This is where I spent the bulk of my time. On a “yearly” clinic day, everyone comes in: the doctors, the dietician, the social workers—and things get a little more in-depth. (Not so much on the doctor end, since I see him every three months.)

*The dietician asks me to talk about what I normally eat: meals and snacks. She’ll then give suggestions. Right now, we’re dealing with weight loss and the silly A1c levels (more on that in a bit), so we want to make sure I’m eating the right combination of things. She made some suggestions, I asked some questions, and it took about a half hour, probably. I really like the dietician so that helps. :)

*My Doctor. I see one of the two docs on the team every three months. This time, he was happy with how I was doing, and we talked about the A1c thing.

Basically, the A1c is a test that looks at how your blood processes sugar all the time—it’s like a batting average. It’s how much sugar “sticks” to your red blood cells. For normal people, you want it to be under 6% For post transplant people, you want it to be in the low 6%, because the prednisone we’re one messes with how our bodies process sugar. So we aren’t aiming for normal people normal, but abnormal normal. :)

I had been testing my blood glucose levels (BGLs) for a few months, and my doctor didn’t think my numbers were really all that bad. (Again, we’re looking at abnormal normal here. Not normal people. ) He did say that if my A1c was up, then we’d probably have to start me on a low-dose, long-acting form of insulin. It wasn’t really because I hadn’t done what they asked—I lost weight, I’m being more active, and I’m checking my BGLs—but because I’ve been on prednisone for 14 years, and I’m in menopause, which, as we know, messes with hormones like nuts.

But my Chest X-ray looked good, and my PFTs were up a point, so lung wise, things are great. Sinus wise, things are great. I’m seeing all my specialists like I’m supposed to and I keep clinic informed of things there.

My doctor wanted me to do some other PFTs so I had to go back to the lab, but we’ll get there in a second. :)

*Social Work: Normally, they just come in and ask how I’m doing and give me a parking token. Since I’m working with some insurance insanity right now, we had more to talk about and they are going to look into some things for me which is massively helpful. So I was happy!

Finally, Pulmonary Function Tests, aka, PFTs.

Normally, when I say I’m doing PFTs, what I mean is I’m doing spirometry. Aka, the thing where you sit down, put clamps on your nose, and breathe in through a tube connected to a computer. You breathe easily for a few breaths (for me it’s two) and then on the third you take in a huge breath, like you’re about to go underwater, then blow it out fast and hard.

You then get results that look like this:

swirly bit is blocked out personal info. :)

Now, this is in liters, and I generally look at percentages. As of yesterday I had about 54% lung function, which is good for me, and that’s the “moderate restrictive defect” part. It’s not anything to worry about, it just says that at the bottom.

I also did two other kinds of tests which check how gases are diffused in my blood and other breathing related things. Those were also fine. So yay there.

11:00 Finished clinic, back to radiology!

I finished in clinic, said goodbye, and my nurse said she’d email me with follow-up things. I then headed back down the elevators,

past the fish….

And back to radiology.

This was a bone density scan that did scans of everything—we did hip focus and lumbar focus, and then the whole body. This is important because prednisone (don’t we love it?!) also causes issues with bone density and causes osteoporosis. Fortunately my bones are AWESOME. I hope they continue to be awesome—I haven’t gotten these results back yet.

FINALLY, the LAST TEST!

11:45 am: Chest CT

so heading back through the center of the hospital, to the Magic Forest!

And into the CT room:

This is just a regular old CT scan of my lungs to make sure we’re not missing any small things that might be happening that regular X-rays don’t pick up. Easy peasy.

So I was free, and said goodbye to the bunny, at around 12:15!

I was really hungry at this point, because I’d only had a little breakfast—you’re not supposed to eat a lot before clinic visits in case something scary shows up in testing and you have to have a bronchoscopy that day. (Yes, that has happened to me before.)

So I was hungry and had walked about a mile and a half, not kidding, in the halls of the hospital. I hit my move goal for the day at 3 PM, so I knew that I’d get a decent workout on this day, lol.

This used to be a longer day—there used to be more tests. So I’m fortunate that this was a pretty quick day and everything went well, except for the silly port being stupid! :)

No, Emergency Rooms aren't "first come, first served"

Time for stories, boys and girls!

Or, really, let me 'splain something to you: How Emergency Rooms Work. 

Emergency rooms are not first come, first served. 

Some people need to be told this. So I'm telling you!

Emergency rooms work on a triage system--meaning, true emergencies go before "emergencies that can wait."

Let me illustrate this. 

If I--a double-lung transplant patient--come into an ER talking about chest pain, irregular heartbeat, fever...
I will get taken back immediately. I will not wait. I will not sit in the waiting room. I will go back and be evaluated post-haste. 

This is because Very Bad Bad Things Could Happen to Me Very Quickly. I could have a pulmonary embolism (PE). I could be having an acute episode of rejection. Many, many things could be going wrong that need fixed tout de suite. 

So, I will never wait. 

Really. 

But to get to that exalted "I will never wait" point, I have to have a long, long history. 

Now, you in the waiting room--you have brought your kid who is sick. Might have a slight fever. Might have a broken arm. Might have an ear ache, or just feel funny, or be vomiting. Most of those things are not emergencies. (Unless it's a greenstick fracture.) These are things that can wait. So yes, you will see people get taken back before you that don't "look" sick. That doesn't mean they are not. 

If you are in a room in an ER/ED, and you are waiting, I want you to think for a second. You have no idea what is going on in the rest of the department. You don't know if five ambulances just came in with critical patients. You don't know if there are lots of complex cases being dealt with. You have no idea. 

Now, if your kid is getting worse, certainly tell the nurses/staff. But remember, there is worse, and then there is "I'm impatient and I want to go home."

Keep in mind that if your kid is healthy enough to wait, you are lucky. 

I have been the kid that the entire ER has been working on--or what seemed like the entire ER. It is not fun. If your kid--or you!--are cranky or tired and want to go home, be glad that you are in that position. Because it means that death is not an immediate possibility. 

I have also been the person who's been in the ER, been cleared, and then waited. I know waiting is not fun. But also, it means, I'm not going to die today! Yay! I'm OK enough to go home! Because how many times has that not been the case for me? A lot. 

So if you are in the ER, and you are tempted to complain because you've been there for six hours, or because the kid in the next room "doesn't look sick", please do not do those things. Please be quiet. And realize that your kid is probably going to be OK. But you have no idea what is going on in the other cubicles and emergency treatment rooms. 

(And also: EDs are not your doctor's office. If you think there is a problem, try an urgent care first. Here is a handy link! ) 

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 

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? 

Thoughts on Health Care/ACA/Etc Part One: Some background

I realize that's not the sexiest title, but I thought that it might be worth sharing some of my thoughts on health care, as someone who both uses the health care system extensively, and someone who worked in government. And since, if I tried to make this one post, the post would be approximately the length of Moby-Dick (and about as fun to read), it's going to be several posts. 

Today: My background in health care and using the American Health Care System 

Tomorrow: Working in Government and Seeing How Things Work (ie, nothing is free!) 

Day Three: Suggestions

I wasn't diagnosed with CF at birth. I was diagnosed when I was 11. However, I had epilepsy before that, and my first hospital admit was at the age of 9 months, so I've been using the health care system intimately for a long time. I always had insurance under my dad's work plan. Sometimes the plan would change and we'd have to deal with companies that weren't quite as good as others (Cigna, I'm looking at you), but I always had insurance. And it was insurance that worked, meaning it paid for the big things, like a two-week ICU stint my sophomore year of college, and lots of not-so-big things, like IV antibiotics at home. 

 I always knew that I had to have a job that would provide good health insurance. Salary wasn't as much of a priority as that was. Working for the government was ideal, because, while the pay was less, the benefits were good. I had three choices of health insurance plans. I chose the most expensive because I knew that my doctors at Children's liked them (meaning, they didn't have to argue with them too much), and they were what I'd had with my parents, so we were familiar with their coverage and co-pays and all that jazz. We knew how they worked. Like I said, this was the most expensive plan and took the most out of my paycheck, but that was secondary to having insurance that was good and would cover things, like the transplant I knew I was going to have soon.  

At that point--2004--I knew I had to have a job, because I couldn't stay on my parents' plan. Back then, you could only stay on your parents' plan through college. The details are sort of fuzzy now, but I think there was a way I could've stayed on their plan, or something, because of all my issues. 

The other option for health care coverage, if I didn't get a job or didn't want to get a job, was Social Security Disability Insurance (SSDI), but I never even considered that, because 1) I wanted to work, 2) I didn't consider myself disabled. Yeah, OK, so my lungs were crap and I spent a lot of time in hospitals. But I could work. I had a brain that worked, I was intelligent, and I was going to use my fancy degree, dang it! I never considered not working, or not going to college.  

So, I had a job, I had health insurance. My  plan paid for my transplant--the surgery, the hospitalization after, the rehab, the drugs. It was good. It did what it was supposed to do, in short. I went back to work and continued to have health coverage. And I still, today, have health coverage (although not as good). 

Obviously, I am a person who requires lots of health care stuff. I require multiple medications to survive (although not as many as I did pre-transplant. Yay!). I wear contacts. I have a cochlear implant. I see a pulmonologist, a cardiologist, an ENT, a dermatologist (because my skin cancer risk is about 10X as high as the general population), a dentist, and an optometrist. In other times during my life, I've seen a rheumatologist, a neurologist, a plastic surgeon, doctors who treat burns, a dental surgeon, orthopedists (two broken bones), and a general surgeon (for when my port was implanted). It's easier to list the departments I haven't been seen in at Children's than the ones I've seen.  I am expensive to keep alive. 

And even with insurance, my family and I have to pay for things. A cochlear implant upgrade? $10,000. Visits to the infusion lab at Children's for blood draws? A few hundred. Pulmonary Function Tests, chest X-rays, CT scans, and EKGs? Yet more money. 

Now, that's the insurance side of it. How about the waiting side of it? Do I ever have to wait for care?

No. 

That's the quick answer. The longer answer is, sort of. My ENT, for example, works at various hospitals. When I need sinus surgery, we do it at Children's because they are so familiar with me, and that's where my lung transplant team is. So if I need surgery, I might have to "wait" if he doesn't have an immediate open slot on a Children's Surgery Day.  Even then, though, it's maybe a month or two month wait, and that's because my sinus surgeries are generally not urgent deals. They need done , but it's not like I'll die if they're not done quickly. 

I have never had to wait for any sort of testing or treatment. That's excellent. And it's almost always been like that, with any insurance I've had throughout my life. 

I obviously have a stake in how health care is "done" in this country. However, that doesn't mean that I fell to my knees in gratitude when the ACA was passed. But that's for tomorrow, when we talk about what I learned when it comes to government and health care.