gifts

This evening Ashley and I were invited to a small gathering at a local university. A group of students had brought in someone to talk to them about organ donation, and she invited Ashley to tell her story.

I never tire of watching Ashley tell others about her transplant. She will tell her story to anyone who will listen. And she doesn’t tell it from a dramatic standpoint; it’s very matter-of-fact and informational. She’s not there to manipulate people into becoming organ-donors. She merely wants the facts of her story and her life to give people a real, live example of the gift that is organ donation.

Emphasis on the live.

But tonight was very different. Before Ashley talked, the family of a donor told their story. The mother cried a couple of times, but her message – that her son got the chance to be a hero, to literally save five lives – came through clearly. And it was a little difficult, to listen to her tell what is a lovely and sad story about her young son’s death, only to sit there next to someone who was there because of someone else’s similarly tragic death. Dylan’s mom even tearfully pointed out that the five people he saved would get to celebrate the birthdays and weddings that they now will never get to enjoy. And so to think about how we’re getting married in a few months was…unfair. To them.

I’ve spent so much time with Ashley, listening to her repeatedly talk about organ-donation as such a great thing – and it is – that somehow until tonight it never really sank in that someone had to die. I mean, academically, I was totally aware of that. But somewhere out there, a young girl’s parents sometimes cry because Ashley is going to have the wedding their daughter will never get.

And I don’t even know how to begin to thank them. Or really to even comes to terms with that.

It’s hard to know that the life you enjoy comes at the expense of someone else’s sorrow. I’m sure Ashley has been more than aware of that for nearly 4.5 years now. But I never really understood what that meant until tonight.

Aug 22 2011

three new things

Even after all the time Ashley and I have spent together, yesterday something new happened. Actually three somethings new.

Thing the first: She woke up at 8AM on a weekend…and stayed awake.

This is tantamount to Lindsay Lohan turning down free alcohol – it just never happens. Usually Saturday and Sunday mornings are my time with the cats, my time to read or do research, my time to watch movies she won’t like and play video games because I can count on her to sleep until probably noon or so. When she sat up in bed I figured she needed to use the restroom. But she stayed in bed and even more surprisingly her eyes stayed open and she voiced her intent to remain part of the conscious world. I was about as surprised as if I’d woken up with an opposable toe or a prehensile penis. Then I learned why she was up.

Thing the second: She woke up early…to read.

Ashley’s not much of a reader. Not that she doesn’t like books, but they have a habit of putting her to sleep. Almost every time I’ve seen her sit down to read for class I’ve seen her asleep 30 minutes later.⁽¹⁾ So it was very strange that as I did my normal Sunday routine – cats, laundry – she was awake and reading in bed. It’s like those dreams in which you go to work and everything’s totally normal…except maybe all the furniture has fur or all the people are green.

Thing the third: Ashley in professional-type attire

This was maybe more jolting than when she sat up at 8AM. Ashley is very much a blue-jeans kind of gal. Even her nicer clothes are what I’d call relatively simple.⁽²⁾ So when we went shopping for more professional clothes, it was something I’d never seen her in before. And she looked stunning, of course. But it was odd, like seeing your boss in a ballcap or something.

And the reason for all of the strangeness?

Today Ashley starts graduate school for a Master of Science in Biomedical Science, Human Donation Science.

In layman’s terms, she’s looking to become a transplant coordinator and/or an organ-procurement specialist.

Every time she’s ever talked about a potential career her interest has always been to help people go through what she’s gone through. At first she wanted to do art therapy, to help children in hospitals deal with being in hospitals. But she’s now settled upon this, and I think it’s perfect for her. She’s not sure which aspect of organ-procurement she wants to be part of, but part of the program is to learn that sort of thing. She wants to help others give and receive the gift of life just as she did.

Wish her luck in your spare thoughts. And cheer her on. She’s gonna be great.

Though of course reading for class is totally different and way more narcotizing than regular reading.
Of course, what I know about women’s clothes could fill a dwarf’s thimble, so…

Jul 28 2011

Transplant check-up day

A few months ago I live-blogged Ashley’s and my trip to the University of Pittsburgh Medical Center. We do this once every four months and while it is sort of like a short vacation, it’s also a short vacation during which we could potentially receive really bad news.

Not that either of us expects that. Ashley’s doing just about as well as any post-transplant cystic-fibrosis patient and her doctors could hope for.

This blog is as much about Ashley, CF, and transplant-issues as it is about me and my rambling concerns re: Batman. So today I’ll be talking about our trip, hospitals, doctors, prognoses and Pittsburgh.

Right now we’re on our way, having awoken earlier than we would have for a regular workday. So so much for the vacation feeling…

More later.

10:30a. Made it to Pittsburgh. Up next: blood-work and x-rays.

12:00p. Two encounters over lunch.

The Pittsburgh Pirates’ Parrot was wandering around the cafeteria at lunchtime. It’s just cool how much this city loves its sports teams.

After Pirate Parrot left, Ashley saw her pre-transplant coordinator and ran over to talk to him right away. He recognized her and was excited to see her and catch up. He congratulated us on our engagement and then had to get back to work. But Ashley was really happy to see him.

Next up: the appointment.

1:15p. Pulmonary Function Test

PFT results are pretty much the metric for how well Ashley’s doing. They measure several different aspects of lung-function which you can read about on my spirometry page. The results are expressed as both a quantity (such liters) and a percentage (based upon the expected quantity for her height, weight and age).

Today’s results:

FVC: 4.58 liters. 116%.
FEV1: 3.15 liters. 134%. (!!!!)
FEV1/FVC: 92%
FEF 25%-75%: 7.99 liters/second. 221%
PEF: 14.63 liters. 220%

In short, these results are freaking AMAZING!

2 – 3:00p.

The appointment went as well as possible. There’s some concern that the PFTs are high due to a mechanical/calibration error. But as far as Ashley’s health everything seems: stellar.

What gets me is how astoundingly lucky we are. Everyday I interact with CFers and post-transplant peeps who continue to struggle with medication and medical issues. Who have even after transplant a rather tough time.

But for Ashley, and by extension me and her family, this hasn’t really been too tough after her transplant. Not that we don’t all put a far amount of work into keeping her healthy. But over all I think we’re incredibly fortunate.

Apr 7 2011

the sit-in: the long version now that i’m awake enough to tell it

After we walked through a couple of hallways and found ourselves right smack in the middle of the news station’s set, my first impression was one of folding out. Sets are designed to be seen from exactly one side and when seen from any other vantage your brain has to realign itself in cranial space so you can piece together what you’re used to seeing with what you’re currently seeing.

It’s all very weird and metaphysical. Luckily the body simply translates it to a very mild vertigo that goes away in about 3.5 seconds.

Also: news stations are messy. It’s not like empty-fast-food-bags-and-soda-cans messy, it’s that there are so many wires of so many colors and cameras and parts and clipboards and gear and it’s all just seemingly lying around. And you don’t know the names of any of it. So it seems messy though I’m sure it’s about as organized as it can be.⁽¹⁾

We walked through the main set, through the Saturday set, and through some other set to the very back of the station. The walls were warehouse-industrial. The ceiling with exposed ductwork. Sheets of plywood leaned against the walls. In one corner a camera. At the other end of the hypotenuse, the set we’d seen on the 6 o’clock news.

There was the chair. A folding chair beside it. A rug. A table. A plant. The rest was plywood.

Ashley and I waited towards the back for our turn in the chair. While we waited someone informed us that the camera was broadcasting live to the station’s website. So really before we even knew it, strangers out there may have already seen us.

My mind reeled. This is the boggling thing about television: The people we watch on it every day are experts in seeming unwatched, while the rest of us are keenly, obviously and starkly aware of it. This unearths all manner of heretofore hidden tics and mannerisms, especially of the face. I’d resolved before we left to keep my face in check, and here I’d been watched without ever knowing it.

However, my sense of betrayal was outweighed by my desire to mess with the audience. I wanted to peek around the corner of the camera. Or like pick my nose or something.

But I didn’t.

I few minutes after we arrived, the evening anchorman⁽²⁾ came back to talk to Ashley. At first I thought he was just saying hey. Ashley told him pretty much right away that she thinks he’s awesome and the conversation turned casual so fast I zoned out for a bit.⁽³⁾

When I came to I realized that the dude was sort-of pre-interviewing Ashley. He already knew her name, but now he was asking about her story.

“Which type of transplant did you have?”
“Why did you need new lungs?”
“And cystic fibrosis just kills the lungs over time?”
“How long has it been since your transplant?”
“Any problems over those three-and-a-half years?”
“Do you know anything about your donor?”
“Would you like to?”⁽⁴⁾

He took zero in the way of notes. I was impressed.

After he left is was our turn in the chair. Ashley took the seat of honor and I sat in the folding chair. A some point the lady from Life Connection told us that she’d put us during this time period specifically because of the live segment they’d planned to do. Ashley and I approved of this choice since we’re both obviously so good-looking.

She and I chatted for a while. There was a small tv just behind my field of vision. It was tuned to the CBS station, but no sound was coming out. Once 11PM hit and the news actually started, Ashley began to panic mildly. She seemed fine until you looked at her hands, which were shaking so fast I was surprised I could see them.

And then the weather came on. And then the anchorman came back. And then some sullen camera-dude stepped behind the camera. Someone told Ashley to turn her mike on.

Next thing you know, we’re live. Not from New York and not on Saturday night, but live as live.

She did spectacularly.⁽⁵⁾ The anchorman asked his questions, which of course he already knew the answers to from the pre-interview, and Ashley answered him as though she’d done this a million times. She’s funny that way: she gets weirdly nervous about some everyday speech-acts, but then things like this that make most people blanch and puke she handles like a pro.

She even managed to plug an event her student organization is doing this weekend.

Afterwards we got to hang out with most of the evening news crew, each of whom told her that she did really, really well. When it was over we headed home and watched ourselves on the DVR.

Hollywood will be calling any time now, I’m sure of it.

My own personal experience w/r/t wires both in the home and a gigs is that, like 80s hair, there’s no real controlling them. You just hope for the best.
Not Ron Burgundy.
I may or may not have been considering scratching my ass in front of the camera.
At this last question I sort of envisioned an Oprah-type moment in which they bring her donor’s family out from stage left or somewhere and everyone is surprised and tearful thank yous are given all around.
Still can’t find the video online. Grr…

Apr 6 2011

donate life’s 24-hour sit-in, with news coverage including a live spot on ashley and yours truly on the eleven pm news.

As part of Organ Donation Awareness month, Donate Life and Life Connection of Ohio are doing 24-hour sit-ins all over the state. Yesterday, Ashley and I spent an hour in the green chair to help support that cause.

Our hour was during the 11 o’clock news, so they interviewed Ashley live. She did very, very well, even though I could see her hands shaking from nerves. The interviewer was one of the station’s evening anchors, a dude who Ashley finds incredibly cool and didn’t hesitate to tell him so.

But so anyway since we were on the 11PM news, we didn’t get to bed until roughly 0100h. And then had to get up at our usual time this morning. So I’m simply too tired to really post about it. I’ve tried like hell all day to find web video of our interview to no avail. Maybe another day. For today though, you get pictures.

Tomorrow I hope to have enough mind-energy to relate the full story and impressions, including the revelation that the weatherman I’ve gotten my weather info from since like age ten is a Paul-Rudd-esque type dude even though he seems mostly personality-less on air.

Journalistic secrets revealed! Interviews you see live on the air are basically re-hashes of earlier, behind-the-scenes interviews!

Ash and I chairing it up.

The live spot begins. You can't see my terror from this distance, but I assure you it's there.

Ashley answering questions. You know he's more awesome than Ron Burgundy by the lack of teleprompter. Also of note: I have a big fan.

Ashley with the other news anchor, who is actually every bit as sincere in person as I always suspected she was. The touching is probably not inappropriate.

All images are probably property of Life Connection of Ohio and were downloaded from their Facebook page.

Mar 30 2011

our eFlow story, so far

The only thing Ashley and I have ever really fought about is her unwillingness to do her nebulizer treatments with any real regularity.¹ From what I can tell, pretty much the entire cystic-fibrosis/lung-transplant community hates doing nebulized treatments. There seem to be two camps: those who complain about it and do it, and those who complain about it and don’t do it.

Ashley falls into the second camp. I fall into the first camp. Except they’re not my treatments to d, and long ago I decided that my job was not to make Ashley do her treatments. I hold to this for two reasons. Firstly, I refuse to take away her right to choose. Secondly, that line between caring for someone and making someone feel sick lies right there, right at that point of forced treatment.

And I understand. The treatment has two parts: a treatment of albuterol² followed by a treatment of TOBI. With her current nebulizer it takes roughly 20 to 40 minutes. The electric air-pump is loud, making it difficult to even watch TV whilst doing the treatment. The set-ups – the tubing and the nebulizer – are hard to clean, prone to clogging because TOBI is a bit viscous in its liquid form. The whole thing pretty much falls squarely under the classification of hassle. And plus she’s supposed to do it every other month, every day for the entire month. Who has that kind of time?³

So I get it. I really do. But we’ve fought about it in the past and recently it’s taken on that edge of things you don’t mention because it’s just dangerous to go there. But I told her I was going to rat her out to her transplant docs. Call me fink. Tell me I’m playing dirty. I’ll agree. But I at least warned her.

As expected, doctoral brows furrowed at my revelation. They were a bit disappointed, but not surprised. Like I said, no one wants to do TOBI. But one of the docs asked what we were going to do about it.

And it's so cute!

That’s when I brought up eFlow Trio, a new type of nebulizer semi-recently approved and tested for using TOBI. I read about in the blogs of various cystic friends and on discussion boards. The single greatest draw to eFlow is that it cuts treatment time in half. Which makes it pretty much awesome.

Her doctors agreed that it’s a great route to try, and that Medicare would cover it despite that she already has a nebulizer. They told her to ask her CF docs to prescribe it for her, along with the different version of TOBI that the eFlow requires.

But the CF docs called Ashley the next week saying that eFlow wasn’t approved for TOBI but only for some other type of medicine that I can’t recall. Ashley had to tell them that it had, in fact, been approved. Had to tell them she was talking about the Trio, not the other one. Basically had to inform her doctors on what they should have known in the first place. Gack.

Anyway, about a week later, after several phone calls, her CF docs approved of her getting an eFlow, but wouldn’t write the prescription. They told her to have Pittsburgh do it.

This is the greatest frustration in dealing with everything Ashley has to deal with. She has teams – plural – of doctors: her CF docs, her transplant docs, an endocrine doc, a nephrologist, and a gynecologist. Pittsburgh is easily the easiest group to deal with, which is great since they’re the only ones I really trust. But her local CF docs, while they’ve done well enough over the years, are infuriating and frankly even childish sometimes. They each have their own interests and agendas. They each want this test and that test, this lab work and that. And no one shares results at all. She pretty much has to keep her docs apprised of everything the other docs have said and done. It’s completely ridiculous, and, as in the current eFlow situation, puts unnecessary stress on the person they’re ostensibly trying to keep healthy. It’s just stupid.

But anyway. Her Pittsburgh docs thought her CF docs were being weird about it but went ahead and wrote the script. She should be getting the new machine soon and hopefully will be more inclined to actually going through with the treatments on a regular schedule. And then she’ll have to update half-a-dozen doctors about it.⁴

For the uninitiated, nebulizer treatments deliver an aerated antibiotic, TOBI,¹ directly to her lungs.
1. Tobramycin inhalation solution, usp nebulizer solution. Novartis Pharmaceuticals Corporation. When inhaled it is concentrated in the airways and is especially excellent at fighting Pseudomonas aeruginosa, a Gram-negative, aerobic rod belonging to the bacterial family Pseudomonadaceae. Pseudomonas aeruginosa is an extremely opportunistic bacterium, rarely infecting uncompromised tissues, but it can infect almost any type of compromised tissue, causing UTIs, dermatitis, bone and joint infections, and the good ol’ respiratory infections which of course are our concern here.
Albuterol sulfate, a Beta₂–agonist. Also used in nebulized asthma treatments, it relaxes the bronchial airways. For TOBI treatments, this is essentially prep-work readying the airways for the real powerhouse medicine.
The biggest problem Ashley has is that she’s so busy these days that if she sits still for more than ten minutes she’ll quite likely fall asleep. Since she breathes through her nose when she sleeps, the treatments do little good when this happens. And plus they take like an hour.
Pre-post update! After I’d written this but before I’d published it – in other words, just NOW – Ashley texted me to say that Medicare approved the Trio and we should receive it next Wednesday. She used an exclamation point in said text, which leads me to think maybe she’s actually excited about doing treatments with the new device. This is about the best thing ever. I worry and stress so much about her not doing TOBI, and I hope the Trio works for her. Then we’ll have to invent things to fight about.

Mar 29 2011

the chair

Beginning at 10:30 this evening,⁽¹⁾ Ashley and I will be spending an hour in a chair.

This isn’t just any chair. This chair has a point: to never be empty.

The reason this chair is never to be empty is that each person who sits in it represents someone who has or can benefit from the wonder that is organ transplantation.

So, for an hour this evening, Ashley and I will represent two people whose lives have been enriched by this medical miracle as part of Life Connection of Ohio’s 24-hour sit-in. The event will happen at one of the local news stations and given that we’ll be there during the 11PM news, there’s a chance that we’ll end up on tv.⁽²⁾

I’ll use this event today to remind you all that organ donation saves lives. But more so, it enriches lives. If you haven’t signed up to be an organ donor, please consider doing so. I’ve written already about why being an organ donor is awesome, and if that doesn’t convince you can check out the information on the Donate Life website. There are a LOT of misconceptions w/r/t organ donation, so please don’t write it off without researching the accuracy of your particular objection, if you have one.

I’m sure I’ll be tweeting from the chair later tonight, so feel free to tune in!

UPDATE: So it turns out I’ve got my weeks all turned around and this whole chair this is supposed to happen next Tuesday. I’m not really sure how I’ve managed to get this one wrong, but, well, there you have it. My bad.
The temptation to do something ridiculous or to maybe make-out on live tv is something I’m hoping to get over sometime pre-2230h.

Mar 10 2011

Pittsburgh weeks: appointment day

7:00a – Wake up early. We drove to Pitt last night because while her appointment isn’t until 12:45p, they have some type of lab they want from her that has to be done early.

Also we have to talk to a Family House manager about getting a parking pass.

And the other advantage to waking up early is that at Family House if you want a hot or even warmish shower you have to be in there pre- about 8ish. They keep energy costs pretty low at these places and part of that is keeping only a few gallons of hot water on premises.

8:30a – Arrive at hospital. UMPC is one of the few places in which I fully understand the phrase foot traffic. People come and go with all manner of comport and dress. There are banks of elevators. Banks. And still we have to wait. It’s that kind of busy.

The diagnostic lab is pleasantly unpopulated this morning. There’s something primordially frightening about lab waiting rooms and this morning I discover it’s the people. All these people are here because something either is or may be wrong. It must weave some type of psychic tapestry that is blessedly absent this morning.

At any rate, we’ve brought all the right paperwork so we are not victims of hemorroidal-librarian glares. Which is a plus.

We move on to the phlebotomy lab. I comment that I love the word phlebotomy. Ashley is nervous about today’s blood test. The results will determine whether they simply take her off one anti-rejection med or try to replace that med with another. The first option is the favorable one here. I tell her to just get on there and do her best. It’s a joke, but not a terribly funny one.

9:03a – We cross the bridge, starting on the eighth floor and ending on the third. Veritgo-feeling none the more manageable for knowing it would happen.

9:10a – Breakfast at the cafeteria is not as glorious as lunch, in my humble o. Though I imagine we’ll be back because Ashley loves the rice krispie treats they make and we usually take home two or three.

10:00a – Ashley was up late last night reading, which itself is weird since I’m the reader of the couple. But so anyway she’s tired and we’ve retired to the hospital solarium/atrium/garden type place for a bit of a nap (her) and repast (me). This type of event is one reason I bought a Kindle. I’ve carried it with me all day unobtrusively in my back pocket and now with two hours to kill I have loads of reading choices. That’s worth the cost right there.

(A note re: formatting – Today’s post has been done and updated on the WordPress for Android app. I’ve not used this app in this capacity before and while I find it robust I have no way of adjusting the included images or really of making my usual footnotes that I know will show up legibly. So today’s post may not look as pretty. Though of course you may think none of my posts look pretty and you likely hate or don’t read the footnotes. All of which is fine. The point is that today I’m sacrificing aesthetic choices for the ability to post in-the-moment. Consider it my version of Anderson Cooper’s tears.)

12:15p – The walk to Ashley’s doctor’s office’s building involves going upstairs to eighth to cross the bridge which puts us disorientingly on third and then an elevator to what purports to be the ground floor but then we descend a bit to take what I always think of as a tunnel but then 3/4 of the through we come across windows that clearly show us a few stories high and finally we’re deposited on the third floor of another building with again little change in personal altitude. This Theseus-ness of the whole thing is inescapable. Nor is my notion that Pittsburgh was built on earthen undulations that froze mid-sine. Next up: PFTs.

12:56p – PFTS: FVC: 3.59, 91%. FEV1: 3.23, 102%. FEF25-75%: 5.20, 144%. PEF: 10.03, 151%. All very good!

1:05p – In which while attempting to take video of Ashley’s doctor’s office’s toilet’s teratoid roar I nearly drop my phone into its open, high-gallon-per-flush maw but instead drop it on the floor at which it instantly goes dark and I think I’ve broken my phone while embarrassingly filming, yes, a flushing toilet, but it turns out not to be broken yet nevertheless the video is gone and of course I’m too embarrassed to go back in there to get the video even though I’m sure Christiane Amanpour would if she were the type of journalist who videos flushing toilets. So you’re just going to have to imagine the monstrous thing for yourself.

1:15p – The actual appointment. The star attraction, as it were. We meet with one of Ashley’s doctors for a while who asks the same basic questions that pretty much any doctor would ask anyone. It gives you a clear idea that initial assessment – any coughing? any fevers? any emotional troubles? – is the same for everyone, that there are lowest-common-denominator-type symptoms that affect and signify for everyone.

After that, though, it gets a little surreal. I don’t say a whole bunch ever, but I feel like Ashley talks way more than necessary at these appointments. Or at least more than I would talk to my doctors. Then again, though, we have very different objectives in visiting very different types of doctors. And aside from that I’ve seen it more than once that an off-hand comment by Ashley will result in a raised doctoral eyebrow and follow-up questions will ensue.

I told Ashley before the appointment that I was going to rat her out w/r/t not doing her inhaled antibiotic, TOBI. And when the doctor brought it up, rat her out I did. I feel bad about it because I totally understand why she doesn’t do it yet at the same time I’m pretty sure a doctor wouldn’t ask a patient to do TOBI if the patient didn’t need it. So but anyway the doctor took on something of a matronly tone and said a totally matronly thing: ‘What are we going to do with you?’ And then looked at me: ‘What are we going to do with her?’ I told the doc that so far I hadn’t been able to find the proper motivation for Ashley on the TOBI thing.

Eventually someone brought up a new type of nebulizer, the eFlow, which from what I’ve read pretty much rules, comparatively. I’ve mentioned it to Ash in the past but she didn’t think Medicare would cover it for her. Her doctor told us that they probably would. So Ash said she’ll look into it next week. Hopefully it helps because TOBI is really the only thing she and I consistently fight over.

Things get really surreal when the doc checks up on Ashley’s meds. This always seems to take roughly the same amount of time as an average James Cameron film. There’s always something new that one of Ashley’s cadre of docs has put her on without informing Pittsburgh. Then opinion abound as to whether she should really be on that. It is head-spinningly complex.

Finally Ashley’s transplant doc comes in for a quick visit. He’s a pleasant but literally egg-headed man, clearly intelligent and devoted to helping pulmonarily afflicted people feel better. And he always picks out the one thing that no one has yet talked about that’s been in the back of my mind all along. Viz., today he brought up that Ashley’s PFTs are still really grand but have been trending downward over the last year. This is exactly what I thought when I saw the results. He said it’s nothing to get terribly concerned about but he wants her to do PFTs at her local clinic more frequently. I’m all for this because PFTs are about the best way to know if things are moving with a southward list.

But otherwise everything is grand. My job over the next few months is to help her get more exercise, no small task for a 300+ lbs. man. But more exercise will mean better PFTs, and right now that’s what’s worrying her primary doc.

2:30p – We’re done for the day. We stop at the UPMC cafeteria for the prenominate yummy rice krispie treats and then head back to Family House. Debate ensues re: do we stay the night or head home now. Since we couldn’t check out of the House before noon, Ashley feels bad about the American taxpayers paying for an unused room if we go home. So we’ll stay in Pittsburgh tonight and head out in the morning.

And there you go. Except for the ill-advised toilet-flush-video thing, this is pretty much what we go through every four months. It can be a bit nerve-wracking sometimes, and other times everything goes so smoothly it’s almost like a little vacation. You just never know.

Mar 9 2011

Pittsburgh weeks: prep and Family House

A lot of the pre-visit prep work is simple, but deceptively so. I.e., when we last visited her doctors in November they gave us a forest-crippling amount of paperwork that we had to keep for the next visit.¹ On the surface it doesn’t seem tricky to keep a stack of paperwork for four months, right? But you’ve not been fully apprised of two opposing factors of our co-habitative way of life: Ashley tends to collect piles of things over time² and I have a low tolerance for piles and will occasionally lose a bit of control and said loss of control will sometimes mean that I throw things away that really weren’t meant to be thrown away.

And so if you show up to the labs without the appropriate paperwork because maybe you tossed them away in an early AM fit of pique, they’ll still do the tests but will scowl at you for a while like librarians with hemorrhoids while they dig up the appropriate authorizations from some database.³

Another prep-thing is simply money and food. Gas in particular is expensive⁴ and this is mostly why we spent the money on getting a decent car. Not only is it reliable but it sucks way less gas than her old car. Food is a little easier to deal with. Since we’re usually staying over at least one night – and sometimes two – we usually buy food at the grocery store here and take it along.⁵ But there are two places we make a point to eat at: The UPMC cafeteria⁶ and a diner called Ritter’s. I’ve been a fan of greasy spoons my entire life and let me just say here and now that Ritter’s takes the cake, diner-wise.

One final prep-type thing is Family House, which provides our lodging during our stay and, thankfully, is covered by Ashley’s Medicare. As some of you know, however, being on Medicare seems to be all about making sure you’ve covered the bases. Because if you’ve left one teensy corner of one teensy base open, Medicare will exploit it and make you feel not unlike the bowling pin Daniel Day-Lewis used to bludgeon that kid to death at the end of There Will Be Blood.⁷

We have to follow a certain routine for authorization at Family House, and especially is Medicare is footing the bill. This isn’t terrible, but mostly because it’s worth dealing with in order to get decent lodging at no cost (to us).

So. Family House.

From the guest handbook:

In 1983, Family House opened its doors to patients and their families providing them with comfortable, affordable surroundings while they underwent specialized hospital treatment at UPMC.

Family House, a non-profit organization, operated by a voluntary Board of Directors, provides a special home away from home for patients and/or families who must travel to Pittsburgh for treatment of serious or life-threatening illnesses.

So basically everyone here is either dealing with or dealing with somebody dealing with some type of ‘serious or life-threatening illness.’ What this can mean is: far-off glances; glazed eyes; traces of tears; strained not-quite-vacant expressions. All from various guests walking the night-time hallways of this place.

What it can also mean is: community; giving; understanding; compassion. Every single person who is staying at a Family House can relate in some aspect or another to what every other person here is going through. More than relate, everyone can empathize with one another.

The only place on earth I know of in which this type of shared-experience empathy exists is halfway houses.

Words like catheter and phlebitis are bandied about like you and I might talk about music. You’d be hard-pressed to throw a stone into the kitchen and not hit someone on serious, high-cost, life-sustaining medication. Or someone who knows someone.

Ashley met a friend years ago because they each stayed at Family House. She’d stayed there a few months before Jamie came in for her transplant and the other people in the Family House told her about Ashley.⁸ When Ash returned for a check-up, people made sure they met. And they’re still friends, sharing an experience they share because of genetics, modern medicine, and Family House.

Some of the Family Houses look like halfway houses. There are large rooms with large communal-type tables. There are kitchens the size of cooking-show kitchens. There is coffee brewed 24/7/365. There are industrial-grade dishwashers and stoves. There are siderooms with collections of old and obviously-donated and -thumbed-through books. There are large TVs in front of large sofas. Usually occupied by people with large, vacuous eyes. There are overstocked pantries and freezers. There are board games and computer closets. There are donation plaques everywhere.

This is on the piano.

And a basket for donated toiletries. Unused, hopefully

Ashley and I often don’t quite fit in. We carry ourselves in a way that clearly marks us as non-immediately-serious-concern-bearing people. I think people often suspect that we’ll only be here a day or to. I try not to think that they may be jealous.

But they are congenial. They are polite and they will talk to us about their problems with zero provocation. And we will listen because that’s what you do here.

So, that’s today. Tomorrow I’ll talk about the actual labs and appointments. I plan to updates the post throughout the day⁹ so stop back often.

_{Most of this is authorizations for various types of lab work.
As in like, things get collected into piles.
One of the X-ray ladies in particular seems severely hemorrhoidal and also possibly menstrual every time we’re there.
And nowadays we’ve gone beyond arm-and-leg expensive to –and-torso-and-gonads expensive.
Grocery stores in Pittsburgh being pricier than those here. Though we do usually stop in Pitt’s store’s snacks aisle for a certain brand of sour-cream-and-onion potato chip that is unavailable in Ohio for some unknowable and likely unsupported purpose of marketing and/or distribution.
UPMC being the University of Pittsburgh Medical Center, a collection of hospitals with individually strange names and über-labyrinthine hallways and a walkway over a street that when you’re on the eastish side of the walkway you’re on the 7^th floor and once you reach the westish side – having changed one’s altitude not one iota – you’re now on the 3^rd floor, the whole thing giving me a not-quite-but-still-almost vertigo feeling every time. But so anyway what I meant to say is that the hospital cafeteria is truly perfuse with tasty comestible options and view for a pleasant prandial repast.
Sorry. Spoiled my own spoiler alert by being a touch late, footnote-wise. Also, feeling like the bowling pin would cast Medicare at Day-Lewis and you yourself as the bludgeoned-to-shit kid because Medicare makes you feel as though you’ve sown the seeds of your own destruction by not following their rules.
Many people in Family House are long-haul-type stayers, for weeks and months at a time, until someone gets better or…well, doesn’t. The first time I was at one I saw a family basically moving in. The father was carrying an acoustic guitar and somehow to me that suggested long-haul, serious-concern-type concern in a way that nothing else had.
Before Twitter we blogger had a technique called ‘live-blogging.’ This will be that.

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Mar 8 2011

pittsburgh weeks

About every four month Ashley and I make a trip to Pittsburgh. The point of Pittsburgh-week is a check-up with her transplant team. It’s actually something I look forward to quite a bit even though there’s always that concern that something’s wrong, like really wrong. And also the part in which we’re basically hanging out in a hospital all day.¹

But overall I enjoy it. My goal over the next few days will be to get you to understand a couple of things. Firstly, I know some of you, O Semi-Constant Readers, are more than familiar with CF/Tx procedures. But for the rest of you I’m hoping to provide a glimpse of what these check-ups are like. I’m not talking like Christiane Amapour type reporting, more like Anderson Cooper. Without all the crying.

Though Ashley is quite the connoisseur of hospital cafeterias, and UPMC’s is no slouch.

a heap of broken images

Category Archives: w/r/t lung transplants