Pretty Little Heads: Women, Health Care, and Anxiety

Why is there so much....anxiety?

--Former Clinton Cabinet Member Robert Reich

One of the things that always gets my goat in the health care setting is when doctors--usually male--ask this patient (a female) lots of questions about anxiety. 

Now, this is a legit question. I've been on anti-anxiety medication since I was about sixteen years old and I was diagnosed with a type of tuberculosis (TB). I would think that most 16 year olds, after having a near-death experience (and that's not an exaggeration--if we hadn't caught it when we did, I probably wouldn't have seen Christmas that year), would be a bit anxious. My doctor, who is Godlike in All Things, tactfully and gently suggested that perhaps I would feel better with some medication, and also a therapist. 

She was right on both counts. I love my therapist, and I've seen her since I was 16.Other than family and a few friends, that's the longest continuous relationship in my life. Not only is she extremely good at her job, but she's also a very nice person, and I have found her invaluable. 

So, it does make sense, when doing a differential diagnosis on me, to ask about anxiety. There's a history, there. I may be on a low dose of an anti-anxiety med, but I  am on one. I've tried to go off it a few times, but thus far it just hasn't worked. So I keep it, and life is better. 

But. 

(You knew that was coming, right?)

Sometimes, this note in my chart becomes something that doctors use as a crutch to dismiss my concerns. This isn't relegated to just doctors, and it isn't relegated to just men. A memorable incident was back in 2011, when I was on beta blockers in an attempt to stop my atrial flutter. It wasn't working, and my HR was doing its merry near 200 BPM dance. In the ER triage area, the nurse taking my vitals asked me if I was "nervous about anything." She asked the question like I was a very small, very silly girl-child that needed to be soothed and pacified. 

Trying very valiantly not to roll my eyes, I said, "I'm on beta-blockers. I physically cannot get nervous."

"Oh. OK!" 

 I have been asked this questions, repeatedly, many times over the years, in a tone of voice that suggests I am either: 1) not-too-bright, 2) five years old, or 3) both. This is insupportable. Yes, ask me if there's any stress triggers or anxiety-inducing events coming up. That's fine. But don't make it sound like you think it's the reason I'm here, and not because of any physical issues that might require your attention. 

Like I said, it's men who primarily do this, and I wonder--do they do this to other men? I can't imagine the condescending mask covering their faces, the simpering smiles, if they were talking to a 33 year old man. But they see me, and they see anxiety, and they go, oh, she's a little touched. 

This is especially true when it comes to pain. Guys. I know pain. I've had pancreatitis eight times. That's generally considered to be really painful. I've had collapsed lungs (although the Queen of Collapsed Lung heroism is my friend Sage, who has had chest tubes put in without sedation--a feat I cannot even imagine. She is the Toughest Person I Know, Bar None.) I have basically been cut in half and put back together! 

I don't write this to be all I AM AWESOME, but to show you that I know what pain is. When I say my pain is a seven or higher, it's legit. It's not Tylenol pain. IT IS PAIN. I'm not making it up. It's not in my head. My pain is real, and it deserves to be treated as such. 

This last time, this was a consideration. Pain halts healing. After transplant, a certain amount of pain is expected, but if it's too much, you can't get better. That's not good. It has to be managed appropriately. There's a reason there's a whole branch of medicine devoted to pain care! I had a doctor tell me that pain isn't something that happens with pneumonia. (Read: It's in my head!)

It's not? Actually, it is. Google it, people. 

Just because I am a girl, and I am on anti-anxiety meds, does not mean I am "drug seeking." It doesn't mean that it's in my head. I have a very good imagination, but come on. Pain is real. Pain is a symptom of a problem. It deserves to be treated, not just brushed off. There are many ways to treat pain, but the point is to treat it. 

This is where my psychologist rises above the rest. Not only does she treat CF and post-transplant folk, but she also does a lot of work with people with sickle cell trait, which is exceedingly painful (so I'm told. I don't know, although I do have thalessimia, which is sort of related to sickle cell disease as a genetic level). She--and her other patients--deal with this all the time. Over the years we've done lots of non-med relaxation techniques--tapes, visualization, even hypnosis once (that didn't work. I threw up all over myself.) We've tried bio-feedback, yoga (which does work, for some things), and other methods. It's very all -inclusive. But sometimes--we need the medication. 

What I do not need to be told is that it's in my head. 

"Well, I'm Back"

the pertinent question then being from where, right? 

That breakfast tray should clue you in. :) 

For the first time in many moons, I spent a week at the resort, having things seen to. It's been since 2008, I think, that I've been in wth lung issues, and so I was totally over due, but it was a totally unexpected happening, as most things with me are. (Do I ever really expect anything when it comes to what my body does, anymore? Well, No. But.) 

Last week I had a col, which I really don't deign to write about, because everyone gets them, and even mine aren't all that interesting. I "finished" with the cold, meaning I was past needing cold meds, on Thursday, but I was steel feeling under the weather and was wondering if it was just really mean cold an I needed some more time to get things together, or if it was  a sort of virus that I really couldn't do anything about, other than ride it out. 

I had chosen the later and was re-watching Season Five of Downton at my place, thinking that I was definitely not going to be up for CCD the next morning. 

And somewhere around episode six, I noticed severe, brand-new chest pain--the sort that makes you think paying attention is a good idea. I sort of pondered for the next hour as the pain got worse, and then finally decided that the choices were calling my parents, or calling a squad, since I didn't think I was capable of driving myself anyway. Lady Edith and Marigold were just going to have to hang out in London for a bit. 

Describing pain is a difficult thing, but I refer you to this Magnificient Chart:. I have had pancreatitis eight times. That's a lot. It's very painful, sort of like knife-toothed gremlins eating away your abdominal muscles and drawing you tightly into a small ball of Awfulness.

This was worse than that. 

So that meant that we were going to have pain meds and, oh, Emily's heart rate was also around 135, when it should be about 90, since all I was doing was siting on a gurney while the end of Armageddon played out on TNT at the new Urgent Care Place (which was legitimately urgent. They had the goods, here.) 

The reason we went to New Urgent Care Place and Not The Resort (hereafter TR) is because I wasn't precisely sure what was happening and ought I'd should be somewhere, you know, close and emergency qualified, as opposed t0 12 miles down the road where the "emergency care" on Saturday night can be sort of scary. (TR does a good job. Won't say they don't. But sometimes you have to wait and when you feel like Death is at the Door, you are not feeling waiting, people.) 

So here we were, at NUCP, and they accessed my port (MIRACLE OF MIRACLES), and we did tests. We did a chest x-ray. We did a CT scan with contrast. We did lots of pain meds and I think we tried EKGs and stuff. My oxygen stauration, which should be somewhere between 95-100, was between 80-100, and supplemental oxygen was being called into use. So, yeah, stuff was Going Down that Wasn't What I Had Planned for My Weekend. 

(Some of the supplemental O2 stuff is from IV pain meds--it depresses respiration. It's a nasty cycle, it is.) 

So at some point it was decided that we'd transfer me to TR, which has all the lovely things I need, and I ended up there Sunday morning. My doctor popped in, and popped out, and other people popped in, and out, and we were sort of not getting the pain under control, which was making me unhappy, and was making my body unhappy, because it cannot stop freaking out if it is still in pain. 

I ended up on the transplant floor Sunday night. We played around with meds, but over all it was sort of a rough night, made rougher by a rough Monday morning, and by the time that by now, my heart rate and breathing had been labored and fast and not pleasant for 36 + hours. 

On top of all this, we were seeing things that looked like pneumonia on my chest x-rays, and I still couldn't take in a deep breath, which means I couldn't really do PFTs, which determine how well my lungs are functioning. However, I was made to do a crappy set, which basically indicated I was alive, but not much else. I was very lucky that I got to speak to the excellent resident, who decided we are going to get Pain Under Control (which we did, magically, without IV drugs yay!), and that there was a a lot of fluid sitting in my chest on the left side. We're going to get rid of that. 

Getting rid of that meant going down to see my Old Friends in Interventional Radiology (I do love them. When I say 'old friends', I mean it. They do good work.) A local anesthetic numbs the area an then a lot of gross, bright yellow fluid comes out. When I say a lot, we're talking liters. We're talking pounds, we're talking big amounts of fluid that should never been in your body, but yet is, and now is magically gone! A lot of it was whisked off for testing, to see what could be dwelling inside, but I was definitely a lot lighter. 

I had a lot of the textbook symptoms of pneumonia, including things I didn't think were textbook symptoms: dehydration, swollen throat, elevated heart rate, on top of things like chest pain, cough, and wheezing. 

I'd been doing IV antibiotics and steroids in case the problem turned out to be rejection (which it's not), and by the end of the week we'd gotten the pain under control, my HR was much more normal, I didn't need supplemental oxygen, and by Thursday my test results were already looking better, so that was a relief. Chest x-rays often take the longest to change, even after you feel better, so to already see changes was a big, positive sign, and my PFTs were rebounding (although that didn't really tell us much, in the long run, since the first set I'd done in house was so awful.) 

Yesterday I was thrown out--yay!--but I'll be back next Monday (not this coming on, the one after) for follow-up and not just from the hospitalization, but also to see how things are doing with the "generic" med I've just started. 

So I won't have much of an "update", I hope, until I'm back at much closer to baseline. Essentially, I've been reading, lusting after Emma Bridgewater's New Spring line, ,and I'm going to be playing with my watercolors and my Rosemary and Co. brushes (the brushes have arrived, and I almost have my palette filled!). 

New Rosemary and Co. brushes--a 2 and an 8. 

Happy New Year! Love, The Insurance Company

I generally like the new year. What I don't like is when it's an occasion for my insurance companies to hose me. 

Before you think this is a "I hate insurance companies, I want socialized medicine!" rant, it's not. I'm a conservative, generally. I do think that health care needed reformed, because I think it's silly that people like me could only get insurance if we were working. That's really silly, guys, because sometimes we can't work and we need insurance. 

Anyway. 

This year, my insurance company has decided that they aren't going to cover one of my immunosuppression drugs anymore. Yeah. You read that correctly. One of the two main drugs that keeps me alive on a general basis--we're not going to pay for that anymore. A nice, bright red "we're sorry" is all I see on the insurance company page when I go to check on this. They don't tell me this is going to be a problem ahead of time--not until I try to get a new prescription. 

"yeah, they don't cover that anymore, so $1,000, please. Per month." 

Each pill is basically $33. $1,000 a month is more than I make all month. 

I'm not complaining about the cost, so much. I know why these drugs are so expensive. A small percentage of the population uses them, and these drugs are hard to produce. I am grateful they exist. But that's something the company should have maybe warned me about well ahead of time, so I would've have time to talk to my doctors, try another med, and then do what I needed to do to keep my immunosuppression regimen at optimal levels. 

So now, I'm going to switch to a generic brand, that may or may not work. The generic version of Prograf (the other immunosuppression med I take) doesn't work for me. How do we find out if these drugs are at a therapeutic level? Blood tests. 

So, I'm going to be getting more blood tests--oh joy, oh rapture, me of the crappy veins--and I'm also going to be at the hospital more often to get this done. All of which the insurance company will be billed for. 

If it works, great--we pay $100 a month, instead of $1000. If it doesn't, then I have to switch back to the "real" med, and apply for financial aid from the drug company, which I'll get, because my paycheck is "a disgrace to paychecks", to quote from The Family Man.

Thanks, dear insurance company, for giving me so much advance notice that one of the drugs I take to stay alive isn't covered anymore. I'm so glad that you care about your subscribers and their health. 

(Not.) 

Deciding who lives and who dies

First, we have some OP Power, from Fr. Thomas Petri, who is the Academic Dean of the Dominican House of Studies in D.C. 

A sampling: 

Do we lose something, as a people, when it not only becomes legal but also expected that those with terminal illness should “choose” to die? If the European experience tells us anything, it is that those expectations willinevitably come. As clinicians morally coerce patients to end their lives (or impose that choice themselves) they will say that such is the caring thing to do, to free the friends and family who would otherwise be bound by responsibility. Yet no one is an island. It’s okay to be dependent. And though it’s difficult, we each know we owe constancy to those who need us the most.

This is one of my hot topics, obviously. In some countries, I'd have been aborted, using today's technology. I am genetically imperfect in a variety of ways. I have CF. I have thalessimia minor--and in Cyprus, babies with thalessimia are aborted, to the extent that there aren't new babies born with it. * 

I've been dependent on other people for most of my life, and I will continue to be so. I can't use a phone, so my parents have to make any necessary phone calls for me. My parents pay for my medications that keep me alive, because my salary is so low that there's no way I could pay for all my health care and live independently. My mom accesses my port every month. My life is totally dependent on the drugs I take. Without them, I'm not here. Heck, I'm only alive because someone decided to donate her organs. Like Blanche Dubois, I exist on the "kindness of strangers." 

Is it great, all the time? Well, no. I'd really like to be able to use a phone, but I like being alive more, so I don't begrudge--too often--the drugs that made it necessary for me to have the bionic ear. 

By my count, I've been close to death about five times. I've had some pretty unpleasant hospital experiences. (pH probe, chest tubes--I'm looking at you!). But never have I wished, in those moments, that I wasn't alive for them. 

"Princess, life has it all over death!", The Engineer tells Kim in Miss Saigon. And that's true. Life is the greatest gift we have. It's not perfect. No one's life is perfect. There will be pain. There will be suffering. It's guaranteed. We cannot prevent it. We cannot remove it. 

A fulfilling life isn't about what you can do. Life is precious because of what it is. We are created in the image and likeness of God. The angels envy us. No matter what we can or cannot do, physically or mentally, the most vulnerable among us need protected. Not snuffed out. 

______________________________

* for the Cyrus stat, from Wikipedia: A screening policy exists in Cyprus to reduce the incidence of thalassemia, which, since the program's implementation in the 1970s (which also includes prenatal screening and abortion), has reduced the number of children born with the hereditary blood disease from one of every 158 births to almost zero.[

{P,F,H,R} 4--Fall is here!

Linking up with Like Mother, Like Daughter!

Pretty

The pumpkin display outside one of the local Whole Foods stores. How many pies do you think we'd get out of all these? I also love the little basket of squash. 

I really love fall. I'm not a huge pumpkin fan, though, but these were just so pretty, all arranged together outside the store on a lovely First Day of Fall! 

Funny

Guys, this is just SO funny, and since I'm distantly related to Cardinal Wuerl, I can use this for my funny, right? I geek out whenever a pope comes to D.C. now because it's total Distant Cousin Mania time!

Happy

This is our CCD classroom door this year. Sr. Paulina, who came to the US from Poland a few months ago, has been helping in our class (partially to help improve her English), and she is greatly gifted with a laminator and some construction paper! I love what she did to our door. 

(I don't know why the little guy looks so oddly squished--but take my word for it, he doesn't look like that!)

This is one of my few fall decorations. While my mom is the Queen of All Household Decorating Things--you should see the house at Christmas!--I don't have as many decorations. I did, however, pick this guy up at Hallmark as part of their 12 months of ornaments series, along with this guy: 

See the little kitty? And I have my Seasonal Angel, too, who's out in her full glory. 

The next ornament in the series is a Turkey--they're all designed to look like cupcakes. The first one, for August, was a crab on sand, which was adorable. 

Real

This is part of the Radiology Department at "The Resort"--aka, my hospital. Since the new addition was built, there is a fancy new "imaging" department, which has taken over most of the traffic that used to come here, when this was Main Radiology for clinics, the ER, inpatients, you name it. I have spent a lot of time in these hallways--sometimes in a bed, sometimes in a wheelchair, sometimes under my own power. After transplant, I came down here every morning around 6 AM for a chest x-ray. It was hard to walk back then--I needed breaks. Can you imagine needing breaks to walk a few feet? It's sort of unbelievable now. 

The only things down here anymore are the regular radiology rooms, and the bone density scanner. The CT scans and nuclear medicine have been moved to the new digs. But this part of the hospital is still a part of my life, because this is where I go for my chest x-rays now before my transplant clinic appointments. 

So I'm probably never going to escape these walls, or that tile pattern--but at least when I'm down here now, it's not an emergency. It's routine. 

Making the Country Accessible: Thoughts on the Americans With Disability Act

President George H.W. Bush signs the Americans with Disabilities Act in 1990. 

Although I don't generally call myself this, I'm a disabled American. (And no, I don't use a wheelchair.) The Americans with Disabilities Act (ADA) made my life a lot easier before transplant--but post-transplant, I see a lot of places where it needs some work.  The Act is 25 years old, so it's a good time to think about this. 

I'm inspired to write about this because most people, when they think about the ADA, think about people who are mobility-impaired--mostly, people in wheelchairs, or who use crutches or canes, or people who are blind. But let's think about people who are Deaf or hard-of-hearing, and people who have respiratory or heart problems. Let's broaden our scope. 

Pre-transplant, I used a handicapped placard for my car. I came upon it rightfully, because the amount of distances I could walk, especially after my stint in the ICU my sophomore year of college, was very limited. Walking around my college campus could be difficult, especially with my backpack full of books. But if you looked at me, I didn't "look" handicapped. I looked fine. I also had about 20-25% lung function. 

Lesson 1: Don't judge someone's handicapped status by the way they look. 

I was very grateful for elevators in my lecture halls, and in other places. There was no way I was going to be climbing lots of stairs (just ask my friend Chris, who had to carry me up the last few flights of the Empire State Building when we visited NYC during Christmas break our senior year. Yeah. Let's all be glad I only weighed about 95 pounds at that time.). My high school also had an elevator--which I never used, but it was good that it was there for students who broke legs or ankles. My elementary school wasn't accessible at all, and students who couldn't go up and down stairs had to be carried by their parents to their classrooms. Not great. 

Even post-transplant, I still used my placard. When I went back to work four months post-transplant, I was still working only half days. I still looked sort of sick--my skin was very pale, I was extremely thin, and my hair hadn't developed the healthy sheen it has now. If you cared to look at me closely, you'd have noticed that I was either sick with something, or recovering from something. Since I worked at the Statehouse, we had Highway Patrol officers that provided security for us, including patrolling the garage. I never paid them much attention to them until one stopped me as I went to my car, shortly after I had returned to work.

"Is this your car?" 

"Yes."

"Why is it parked in a handicapped spot? Are you handicapped?" The tone in the officer's voice indicated that he didn't think I was.

"I just had a double lung transplant."

There are few things more satisfying than watching people realize they've just had a major Foot in Mouth Moment. 

Now, I don't have one anymore. Now I walk across the parking lot with all the rest of you. But let's please remember that there are many invisible disabilities. Arthritis? Check. CF? Check. Autoimmune disease in general? Check. Epilepsy? Check. Diabetes? Check. Etc. 

(also, little side note: CF can cause arthritis. Yeah. That's a fun little holiday treat, as they say in Family Man. One of my friends has terrible CF related arthritis. Mine was not as bad as hers, and there were still days when my joints were so tender and so painful that the thought of putting any pressure on them--the though of even standing--was out of the question.) 

Let's talk about my life now. 

I have a cochlear implant.[ It is only by sheer dumb luck, or God prompting, that I took two years of American Sign Language in high school. I can use it if I have to. Normally, I don't. But I can.] There are so few accommodations for Deaf and hard-of-hearing people! 

Marcus Theatres is the only cinema chain around here--and I live in one of the largest cities in the U.S.--that provides captioning for every movie it shows. AMC doesn't (AMC is our other big local chain). When I want to see a movie, it has to be at the local theater, and if it's not showing there, I can't go, because I won't understand it. Apparently, AMC doesn't think that Deaf people or people like me might like movies. 

The system I use at Marcus is called Captiview. Marcus has about five of these systems and all I have to do is ask for one at the box office. It's easy to use and it's not distracting to others. They can't see the light from the captions (My friends and family have tried to read the captions when we're at the movies, and it's only if I turn it to face them that they can). Sure, it's a bit unwieldily to carry around in the multiplex, but it works. I love movies, and now I can go out and watch them in the cinema like everyone else. I get to see movies, movie theaters get my money! Yay! But if all movie theaters provided captioning, I could see a broader range of movies--and I'm lucky that the theater that is closest to me provides this service. And they're not a nationwide chain. They're Midwest-based and only in states like Ohio, Wisconsin, Illinois, and Indiana. So if you live somewhere else, then I hope your local theater has something similar, or you're out of luck. 

Some cable channels aren't captioned. YouTube videos, or online videos? No captions except "automatic" ones, which are about as useful as captions in Swahili to me. Warner Brothers, especially, incurs my wrath, because they do (Pardon my French, here) half-assed captioning. When I watch The Wizard of Oz and the captioning automatically comes on, it doesn't translate word-for-word. It gives a summary of what the character is saying. 

Lesson 2: Deaf and Hard of Hearing People Like TV and Movies. Please caption things for us--COMPLETELY! 

Seriously--the next time you watch anything from Warner Brothers, turn on the captioning, and you'll see what I mean. I know they're leaving words out, because I can hear the dialogue. (Not understand all the dialogue. There's a difference.) 

Some DVDs don't even have functioning captions. What is that about, guys?

Captioning like this isn't covered by the ADA. The only thing that must be captioned are channels that receive federal funding. Well, thanks. 

Normally, I'm a small government person. But this is ridiculous. Provide a basic service that is inexpensive (see the Captiview site I linked to--that's one of the selling points for their technology), easy to use, and not at all inconvenient to other patrons. 

Another area that needs work? The phone. People, not everyone who is Deaf or hard of hearing has a TTY. I don't have one. I don't know how to work one. But if a website provides chat services, I'm fine. We can communicate just great. I use email most of the time because if you call and talk to me, you will sound like Charlie Brown's teacher, unless I know your voice really well. (Meaning, you're my parent. And even then....)

AAA, for example: when I got a flat tire a few years back, I couldn't call them. I had to text my Dad to have HIM call them to come help me. It was ridiculous. Can't we come up with an app that will allow texting to contact services? This is the 21st century. We have apps for everything. Or not even an app--a number that could be reached via text message. 

This is especially true in health care. Oh my gosh. When I have a call with a case manager, my mom or dad has to sit and translate for me, because the case manager can't email me. It HAS TO BE over the phone. What? What sort of sense does that make? If you don't want to email, then set up a chat window on a website, like my bank has, or like many shopping sites have. If Bobbi Brown Cosmetics and the Disney Store can have a chat interface, then medical and insurance companies can, too.  Don't they ever think they might be working with a person who has a hearing disability? 

The law did a lot of good things, but there are plenty of things that still need work, especially in the realm of hearing, as I hope I've shown you. 

Tomorrow I'm going to write about accommodation in a place where you'd think it should be second nature--churches. 

Daybook No. 97

(it's back!)

Outside my window::

Sunny through thin white clouds. It's not going to be very warm today--well, warm for June--so swimming is probably out, but that's OK!

Wearing::

Jeans, a bright blue v-neck t-shirt, and flats.

Reading::

Working on Northanger Abbey. I finished Prodigal Summer yesterday, and man, I wish Barbara Kingsolver would write a sequel. It's that kind of novel where you want to stay with the characters for a long time, even after the book is finished. I'm reading The One Thing is Three for my spiritual reading. The rest of the fiction pile includes The Forsyte Saga and A God In Ruins, and then I've got What Matters In Jane Austen and Jane Austen's England. So a variety of things on the reading pile!

In the CD player::

The Light in the Piazza, celebrating Kelli O'Hara's Tony win.

Writing::

This week I'm doing something different with LA--I'm going back to doing the link-ups/weekly features that I've sort of been neglecting amidst the new writing plan. So tomorrow is the Yarn Along, Thursday I'm talking about Sketchbook Skool, and then Friday we'll have Quick Takes. I'm also going to get some things pre-written because I'll be in Pittsburgh until Tuesday.

The Dominican section of the memoir continues apace. It's sort of a complex section to write but the goal here is to get it down into a physical form on "paper" (or, in a Pages document). Then I can revise it. I'm hoping to have the section done by the end of the month so that in July, when I'm back from Charleston, I can start sending out queries and book proposals. (EEEEEK)

Creativity::

You'll have to come back tomorrow and Thursday to read about that. :) But really, it's been really interesting in this area lately.

Health stuff::

So yesterday was my Annual Clinic Day of Testing for Transplant Guys. :) Basically, all the yearly tests we do, I did yesterday. That involved lots of blood-letting, full PFTs (Pulmonary Function Tests--"full" meaning more than just the basic test I do every visit. We checked gas diffusions in my lungs and some other fun things), a CT scan of my lungs, bone density scan, and an abdominal ultrasound, which looks at my spleen, liver, kidneys, all that sort of stuff.

I lost five pounds "officially" in clinic (I told the dietician that I had lost 10 lbs at one point, but the loss doesn't want to stay there, sadly), and the PFTs went up four points. So win to that correlation. Everyone's happy with that. I haven't gotten the results back yet from the other tests. (Other than things like my regular chest X-ray, which looked fine and dandy--we saw that in clinic.)

Today I'm going to see my ENT so he can check out my sinuses. I see him about every six months, and about every two years, we do the sinus surgery. This is because even though my lungs don't have CF, the rest of my body does, so we still have to keep the sinuses happy. They tend to fill with the CF-quality mucus and that can be a huge breeding ground for infection. Fortunately, I don't have nearly as many sinus issues as some other CF folks I know.

Pondering::

I normally don't talk to many--if any--other patients when I'm at Children's. Part of that is because I don't really talk in waiting rooms, at all, and partially because a lot of the time, I'm alone. In clinic, I'm in my own room, and in radiology, the transplant/cancer patients sit in the radiology hallway itself, not in the general waiting room, because of concerns about sick people.

I'm really familiar with the radiology hallway. It used to be main radiology for the entire hospital, so I've come here as an ER patient, as a CF outpatient, and in the days after transplant, at 6 AM, before the hospital was really "up", so I the chances of me running into a sick person (or anyone else) were really slim. I know all the radiology techs really well, and know some of them by name.

There are three chairs set up outside the main waiting room door for transplant/oncology patients. Sometimes it's me and other transplant patients who are being seen that day (we all have the same routine--blood work, x-rays, clinic), but mostly it's just me.

Yesterday there was a small family: a boy, a girl, and the mother. The kids looked to be in high school. I knew the boy was a transplant patient because 1) he was wearing a Dash for Donation shirt (it's the annual Lifeline of Ohio race), and 2) he had a mask on. Most of us wear masks in the hospital. I hate wearing them so I generally don't. (yeah, I'm a rebel.)

But the boy looked so sick. I couldn't tell if he was pre or post-transplant. He was so thin I could see the ligaments in his legs around his knees, the tendons popping out. His shirt hung on his, and he was in a wheelchair. He didn't really look anywhere, other than vaguely at his lap. His sister was plugging away at Facebook on her phone, but he just sat there, vaguely thinking about something.

I knew that look. I'd been there. It's the look of not really having the brain power to do anything else but tend to the function of your body. Breathe, sit up. Breathe.

He went back for X-rays, and I talked briefly to his sister--small things, about the waiting area, her sparkly phone cover. Her brother came back quickly and they were gone, heading up to clinic.

The radiology technician called me to a room. "He's rejecting," she told me.

"How far out is he?"

"Five years."

Ah, five years. Five is a magical number. About half make it to five years--it's a little less than that, for girls. UNOS (United Network for Organ Sharing) doesn't even have 10 year stats on their website, yet, for lung transplant patients. At hitting 10 years, I'm sort of a statistical anomaly. Five years is becoming more common, but 10 is still out there, and the people I know who are 15+ years have had two transplants.

I am extremely, extremely lucky. And it could all change, but right now, the fact that I'm this far out, and that I'll be celebrating my 10 year mark in a month, is incredibly fortunate. I am incredibly fortunate.

Plans for the Week::

I have a Summa Theologica class at church on Wednesday--this just started last week--which means I have to read Question 2 of Part 1 today so I'm ready to talk about it tomorrow. :) On Friday I have another doctor appointment and then I leave for Pittsburgh on Saturday!

(note: that lovely photo of bluebells? Elizabeth Foss took that. :) I hope she doesn't mind that I borrowed it from her website! It's just so gorgeous.)

Seven Quick Takes No. 78

I.

mmmm. Summer Friday. Those are beautiful words in the English language, no? :)

II.

Since it's summer, more people read. You can, of course, join the Jane Re-Read (Sense and Sensibility is what we're talking right now). I'm still reading Prodigal Summer and Northanger Abbey. I just finished I Believe In Love, about St. Therese of Liseux and how she can lead us to a deeper spiritual life, and I really liked that one. There's a lot to ponder and I'll definitely be reading it again. (Who am I kidding. I read everything again....unless it's Moby Dick or Portrait of the Artist as a Young Man. Shudder!)

I keep debating if I should read Girl on a Train. Yes? No? Thoughts?

III.

My 10 year transplant testing appointment is on Monday. To put this in perspective: UNOS (the United Network for Organ Sharing, which "does" transplants in the U.S.) doesn't even have 10 year survival rates on their chart. The last one they have is 5 years out, and for women, that rate is 46.1%. I read somewhere that 10 year survival is around 30%, but I forget where. So, for ONCE, the odds have been playing nicely with me. I rejoice in this. The actual 10 year date is in July, but we do the testing in June, usually.

IV.

I've discovered that a lot of women don't know basic maintenance things. This sort of scares me, ladies. You should know to put gas in the car (and what kind of gas), how to jump a car battery, how to use tools, how to unclog a toilet. Even if you're married, your husband isn't aways around to fix things! I'm amazed at how many women I know who can't do any of these things and I want to be like, girls. Come on now!

V.

My brother's girlfriend sent me this photo of him at Disneyland, and I just love it:

As Br. H said, "How many Evil Empires can you fit in one picture?"

VI.

I've started swimming again--yay! But man, the muscles feel it when you swim hard for the first time in a season. They rebel the next day. But it's so good to be in swim season again, I do not mind at all.

VII.

Almost time for Edel 2015 in Charleston! I'm so excited!! I've never been to South Carolina and I can't wait to meet all the amazing women who will be there!