Tag Archives: lung transplant

Feb 12 2010

Eva

Eva is a young woman from Vancouver who has lived with cystic fibrosis all her life. She received a double-lung transplant a few years ago but has since been dealing with chronic rejection.

A group of Canadian film-makers made her the subject of a documentary called 65_RedRoses, after the title of her blog.(1) The film is winning pretty much every Canadian award for its category, but it still unavailable in the U.S.

But none of that matters. Eva, unfortunately, is dying.

This is her goodbye.

“This is the end of my life, but not the end of my love.”

Damn straight, Eva.
Farewell.

  1. Health-care professionals teach young children how to say cystic fibrosis by telling them to say 65 roses.
Jan 6 2010

just a cold

Ashley has come down with a cold.

It’s just a cold, right? Nothing to worry about, right? I mean, we both had our flu shots, and our H1N1 shots.(1) Hell, we even got H2D2 shots!(2)

So it’s just a cold.

Except.

It’s the first cold she’s had since her double-lung transplant two years ago.

Eek.

She sneezes a lot, which she apologizes for almost every time. But I’m actually glad. If her lungs weren’t properly functioning, sneezing would be difficult and painful. So I tell her to sneeze away.

But I worry.

She coughs and it sounds like a normal cough. When she rolls over from her left to her right side I can hear her breathing change as mucus shifts nostrils due to gravity. This happens to all of us and is totally normal in every way.

But I worry anyway.

Her voice sounds strange and works intermittently in the morning. She clears her throat and it sounds normal and gets a little better every day.

But I worry anyway.

While her lungs are no longer cystic(3), her trachea and sinuses are. They still create the viscous mucus that her lungs used to create. Though it’s not much of a danger, mucus from her trachea and sinuses could drain into her lungs and begin closing off the smaller airways.

So I tell her to sneeze away. If she coughs something up, I’ll pull over the car if I have to so she can spit it out. When she clears her throat, I’ll get her a tissue if she needs it.

I want those airways to stay open as long as possible.

As a species, we tend to be disgusted by urine, feces and sputum. But these three things are exactly what we should be looking at if we want to gauge what’s going on with our bodies. I try to look at her sputum when I get the chance. She willingly shows me and it’s one of the most loving moments we’ve shared.

Because we both know that if we hang in there long enough there will be more of this.

We don’t talk about it a lot, but we know that illness and pathology will always be part of our life together for as long as it lasts. When she asks me if I think NyQuil(4) will be safe for her, I have to waver in my response. I don’t know how an antihistamine will interact with everything else that she takes.(5)

But I don’t treat her like she’s sick. Being mindful of her CF and her lung transplant is different than making her mindful. Not that she forgets, but what kind of life is it to live on a tightrope of wellness? She’s absolutely certain that the reason she’s still alive and still well is because she never let people put her in a bubble.

I won’t do it either.

So I’ll worry. I’ll download apps to help me with her meds. I’ll read journal articles – real articles with unpronounceable titles. I’ll learn what I can learn. And I’ll worry some more.

I’ll treat her like the friend she is. I’ll get her a glass of chocolate milk when it’s time to take her meds. I’ll bug her about doing TOBI(6) and she’ll hate me a little for nagging but I’ll do it because I love her and she’ll know I’m doing it because I love her. And I’ll worry some more.

We’ll joke around a lot and hold hands as we watch TV. We’ll wrestle and play-fight and sometimes I’ll lose and sometimes she’ll lose. We’ll talk trash. We’ll stay up late playing video games and she’ll holler at the TV during footballs games. And still I’ll worry.

She’ll make me take a break when I need it. She’ll make sure we’re intimate even when we’re not feeling well. She’ll make sure we never go to bed angry and she’ll make the bed in the morning.

And sometimes she’ll catch a cold.
In time, I’ll understand that it’s just a cold.

  1. The Flu formerly known as the Swine Flu.
  2. Robot Flu
  3. Since cystic fibrosis is a genetic disease, and her lungs came from someone else who wasn’t cystic, her lungs are not cystic even though she is. Weird, I know.
  4. NyQuil is a part of the Vicks family of over-the-counter medicines and a registered trademark of Procter & Gamble Co., based in Cincinnati, Ohio.
  5. I downloaded an app that lets me look up meds and interactions. Just in case.
  6. Tobi is a brand name of Tobramycin, an aerosol antibiotic used to fight infections.
Dec 27 2009

heads up!

Astute as my Adored Readers are, I’m sure you’ve noticed that I’ve added two new pages to my blog. The first is an informational page regarding cystic fibrosis. The second is a promised page about all the meds that Ashley takes on a daily basis to help her deal with both CF and having two lungs that she wasn’t born with. Feel free to have a look when you have free time(1), and if you’re inclined you can also check out the list of CF bloggers I’ve posted on the sidebar.

  1. In particular, the meds page makes my happy. I feel like I missed a calling in pharmacology.
Nov 18 2009

vaccination station

I’ve had a hard time getting the H1N1 vaccine.(1) It’s no news that it’s in short supply everywhere, and because of that it has been limited to high-risk individuals.(2) I am not a high-risk individual(3), However, living with someone who a) has cystic fibrosis, b) has had a double-lung transplant, and c) is, resultantly, immunocompromised, means that I have to get vaccinated for the flu and for the disease-formerly-known-as-swine-flu. I had difficulty explaining this to my primary care physician, and they were in such short supply that they turned me down.

Today, though, I finally managed to get the shot thanks to the fine folks here on campus. I feel better knowing that it’s one less thing to worry about. But because having one less thing to worry about isn’t nearly as awesome as having many less things to worry about, I got the thinking about other things I would like to be vaccinated against.

  1. Zombies

  2. The dark side of The Force

  3. Voodoo

  4. Journey

  5. Golden Girls

  6. Lady Gaga

  7. Rene Zellweger

  8. H2N2 – Swine Flu the Sequel

  9. H1N-1 – Swine Flu the Prequel

  10. H2D2 – Robot Flu

  11. H1U2 – Bono Flu

  12. Zombies

Hopefully we’ll see some of these soon.

  1. The word vaccine comes from the Latinate word for cow. This has nothing to do with my post; I just think it’s interesting.
  2. Health care workers, pregnant women, people who care for children less than six-months old, college students up to 24 years old, people 25 to 64 with chronic medical conditions, zombies, Katie Holmes, the little people who live inside the television, cops, and that dude on Yo Gabba Gabba.
  3. Well, not that way.
Nov 10 2009

and a flaming pussy at the end

Lately I’ve actually had plenty to blog about, but no time to blog. So today, here’s a nice, long post in four parts (with footnotes of course) to catch you up. I thought about breaking these into their own posts, but decided to opt this way. So suck it.

1. Trans-Siberian Orchestra

On Sunday, Ashley and I went to see Trans-Siberian Orchestra with Bubby and Dee.(1) My love for TSO, when it began 12 or 13 years ago, was instantaneous. From the opening arpeggio of ‘Christmas Eve (Sarajevo 12/24)’ through to the power-chord-riddled climax of the song, I was hooked like I’d never been hooked before. This occasion marked the one and only time I rushed out to buy a CD immediately after seeing the video. I felt cheap and dirty for having let MTV influence me so, and upon my return I showered until the upper-three layers of skin were gone. But I listened to the CD the entire time.

The album didn’t disappoint, and though the following albums haven’t been up to par(2), I’ve never faltered in my love for what they do. Seeing them in concert was the culmination of many years’ worth of longing to see them but never having cash at the right time.

The show didn’t disappoint, either. The band played well, the sound was amazingly well-balanced, and the light-show may have topped the Pink Floyd show I caught back in ’94.(3) A little warning sign was posted on the entrance to the arena:

“Trans-Siberian Orchestra makes use of strobe lighting effects, which may cause seizures in some people. Also, Bo rules!”(4)

This is the most understated warning I’ve ever read. It couldn’t be more understated if Eddie Izzard stood there(5) and personally announced it to each passerby in his droll, British manner. There were more lights than Chevy Chase stringing Christmas lights on a house on the sun. There were screens of lights, lasers, strobes, kliegs, spots, and even fire…fire that changed color no less.

Let’s just say that Helen Keller could have dug this show.(6)

And, as I’ve mentioned, I did too.

Though she should have known better, Dee arranged things so that Bubby and I were sitting together. As such, tonight at band practice we’re going to figure out how we can pull off a few TSO covers, including their version of Canon in D.(7)

2. Ashley’s test results

Yesterday Ashley got the results of the recent bronchoscopy she underwent to see how her lungs are doing. This is a fairly routine procedure for lung-transplant patients, the purpose being to check for infections and signs of rejection. It’s pretty much as the word sounds: they stick a camera down her throat in into her lungs all the way into her bronchial passages.(8) The procedure carries its own risks, but her doctor felt it worthwhile to do.

I’m happy to report that the brochoscopy showed no signs of rejection. She has a mild infection, but it’s something that cystics contract on a regular basis and, therefore, is nothing to worry about. Her chest x-rays were also clean, though she was very amused that her breasts now show up on the x-ray. After being so thin for so long, she loves having boobs for a change.(9)

3. Ethical concerns and low-light grilling

After work yesterday, we went to the store to find something for dinner. I happened across a new brand of chik’n cutlets and decided then and there that it was pleasant enough outside to fire up the grill. So Ashley bought herself a nice big steak and we went home where I realized that I was going to lose the light in a hurry. It was already 5PM, and around here it’s getting dark at that time already.

Undeterred, I fired up the grill and put her (real) meat and my (fake) meat on (very opposite) sides of the rack. In time I would have to grab a small flashlight and hold it in my mouth while I checked to see if her steak was properly done.(10) One of the neighborhood cats approached as she always does and I pet her and fed her a little of Ashley’s steak, careful to wipe my hand before touching my chik’n again. I kept my plates and utensils separate, but still the ethical question bogged my mind, viz,

Part the first:

Ashley, due to her lung transplant, requires more of certain nutrients than most of us do. (Mostly iron, but other things that help her absorb and use the anit-rejection meds.) The best source for these nutrients, other than the supplements, is red meat. In this case, is it ethically acceptable for her to eat animals?

Part the second:

Because she has been told to eat red meat by her doctors, and because she may not be able to live without it, it is wrong for me, as a vegetarian, to prepare meat and meat-dishes for her? (I’m not eating them.)

The always-up-for-an-ethical-food-debate Lindy Loo has stipulated that the first argument is questionable and she challenges the doctor’s information that red meat is the best source for iron. She pointed out that doctors and surgeons are typically under-informed w/r/t nutrition issues and give advice that contradicts that of nutrition studies.

This makes sense to me and I think she has a valid point. However, Ashley takes quite a bit of iron each day, in the form of pills, and after some recent blood-work was told to up her iron intake, not through more pills, but specifically through red meat. I know that some nutrients (protein is a good example) are found in several different forms depending on the source(11) , and that nutritionists advise getting these nutrients from a variety sources. Perhaps this is the case for iron. It’s a question to be asked.

W/r/t the second ethical question, I don’t see a problem with it personally, nor does Lindy Loo. I make sure that I’m not mixing up my utensils and plates and whatnot, yet I’m sure some people(12) would have a problem with a vegetarian cooking meat. So I continue to debate it in my head.

4. And lastly, Switters and fire

Last night, around midnight-thirty, Ashley asked why something smelled like food. I looked out to the kitchen area and the light wasn’t quite right.

Because the stove was on.

Somehow Switters, who’s just gotten big enough to be able to jump up on the sink and counter, and therefore also the stove, had turned the knob and lit the stove when he’d jumped down. The gas burner was going on high and burning the shit out of some potatoes we’d accidently left in a pot.

But at least the cat himself wasn’t a running blaze through the apartment.

The whole thing was scary as hell. If we hadn’t been home….

And I’m not sure what to do. Cats climb around; it’s in their nature. He’s a rambunctious little dude and a lot of fun, but I can’t have him burning the house down. For now we’ve taken the knobs off the stove, but I have a feeling that from now on I’ll be worried about what he’s doing when we’re not home. I’ll soon long for the days when I was merely worried that he was peeing on the sofa or chasing the other cat around all day.

So there. You’re all caught up. Because clearly you cared to be.

  1. Friends of mine, and, together, we form three-fourths of our own band.
  2. The Christmas Attic isn’t as musically interesting as Christmas Eve and Other Stories, but does have a few high points. The Lost Christmas Eve is, musically, the best of the trio, but doesn’t transmit the story as effectively as the first album. In fact, you can’t discern the story of The Lost Christmas Eve without the CD insert, and who the hell buys CD insets anymore?
  3. This began my long-term love affair with Cleveland, as it was the first time I was there.
  4. Due to the constraints of memory, the language here is an approximation.
  5. In tight pants, a sensible blouse, and fabulous heels, of course.
  6. Or do I mean Anne Frank?
  7. I’ll maintain until I die that it way better in Db.
  8. She is, thankfully, put under before they do this. Though the technician told me of one guy who wasn’t put under and I imagine that when they got the scope down far enough they found a giant set of steel testicles.
  9. Just yesterday she said, “Even God couldn’t make boobs as awesome as mine.” And I wholeheartedly concur.
  10. Medium-well.
  11. Animal, vegetable, or mineral.
  12. PETA, for example. But seriously, if there’s a more hypocritical ethical-concern group out there, I’ve never heard of them.
Nov 9 2009

legos

lego

from xkcd.

Organ donation saved Ashley’s life just over two years ago after a lifelong battle with cystic fibrosis left her with less than 15% lung capacity in one lung. This idea, that we’re all like Lego(1) pieces that can be mixed and matched, is the most honest analogy I’ve ever heard in favor of organ donation.

Wanna be an organ donor? Go here.(2)

  1. Lego is a registered trademark of Lego Group, a private, family-owned company based in Billund, Denmark.
  2. No seedy motel bathtubs filled with ice involved.
Oct 21 2009

perfectly logical reasons why you should probably be an organ donor

  1. It’s the only scientifically viable way to go on living after death.(1)

    2. No bathtubs-filled-with-ice involved

    No bathtubs-filled-with-ice involved

  2. If you do become a zombie, you won’t have as much dead weight to haul around as your fellow undead. You’ll be faster, which means more brains for you!(2)

  3. You could save the lives of eight others. If you include their families, extended families and friends, it means that you can call in tons of favors in the afterlife. You’ll never again have to get up to get your own beer.

  4. Without some type of anime-inspired prosthesis, it’s the only way you’ll ever be inside eight people at once.

  5. Some transplant recipients have claimed that they have random cravings for food they’ve never even liked before. So, finally, there will be someone else on the planet who enjoys peanut-butter-and-sweet-pickle sandwiches as much as you do.

  6. Recipients also sometimes write letters of thanks to the donor’s family, and it’s always nice to get things in the mail besides bills, fliers, overdue notices and autumn leaves.(3)

  7. Also, some recipients have dreams of people they don’t know. There’s another term we use to describe the splitting of a person’s consciousness into many others: army of minions!

  8. If your consciousness does split into eight other people, imagine all the showers you’ll get to voyeur.

  9. The ruling deity of your religion will look at it as your final act of compassion. That should totally make up for that time in eighth grade when you touched yourself inappropriately.(4)

  10. It’s the only medical procedure you can get for free. Why not stick it to the man once last time?

  11. They’ll pack your organs into coolers filled with ice. And that is just sweet as hell.

  12. The recipient will have cool scars. He or she will tell others about the scars, and you’ll get to be part of a cool story.

  13. You will give the gift of life without getting knocked up or knocking someone up. Without morning sickness. Without back pain. Without leaking breasts and raging hormones. Without midnight cravings and constant uterine pressure. Without having to pee every six seconds.

  14. You will be loved by many, many people, not just because you died, but because you chose to go on living.
  1. Zombification, of course, is still on the outer fringes of modern science.
  2. Assuming, of course, you become a zombie after you’re dead.
  3. Though the leaves are nice.
  4. And that other time in eighth grade. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time. And that other time…right up until that time not long before you died.
Sep 24 2009

re-birthday

ashleyTwo years ago today, my girlfriend underwent a double-lung transplant.1, 2

I wasn’t around for it. I didn’t even know it was happening at the time. In fact, I didn’t even know it was possible.

It’s hard for me to imagine…her lying there on a table with lots of fantastically bright light overhead and the beep of the heart monitor and the gasps of the respirator and low murmurs of surgeons and metal-on-metal scrapes and the meaty sound of internal organs being moved and an effluvial, omnipresent hiss that always seems to accompany these scenes. I look at her scars sometimes and I try to put together how they opened her up, dug out the lungs she was born with, put in a new hale pair – soft and pink, not like the viscous, shriveled, over-taxed lungs they’d just taken out.

Sometimes when we kiss I think about the scars I can’t see, tracheal and bronchial. I picture them as best I can, red in the darkness of her throat, jagged thin squiggles of a life in the balance.

I’m not really sure why I do this. Not sure why I fixate upon it. I think it’s because I wasn’t there.

And maybe because I almost lost her, even before I had her.

I try also to imagine her immediately after her transplant, paralyzed on a bed, a feeding tube coming out of her belly. She wouldn’t have been able to talk or laugh, but…would she have been able to smile?

I can’t imagine her without a smile.

She told me how for a while she’d lost her laugh.
I am grateful she found it again.

I envision her walking the hospital hallways, convalescing more quickly than anyone would have imagined. She gets slowly stronger, working on her atrophied muscles as much as restoring her lung function. Everything is over-lit and there are sounds unidentifiable by anyone who hasn’t been there. I see her family around her, their happiness with this gift of life still a little overshadowed by an unspoken concern and the disbelief that she’s well, that she can breathe, that she might just be okay. Because it’s been a really long time since she was any of those things.

I try to be there with her, walking around the streets of Pittsburg when she’s well enough to do so. I see her carrying her newborn nephew through the museum.

But I wasn’t there when she got the call that her body was rejecting her new lungs. And I wasn’t there when they made it okay again.

Someday I’ll get the chance to shake her doctors’ hands. Someday I’ll find every single person who had something to do with keeping her alive, every doctor, surgeon, nurse and aide. Someday I will walk around with her and put a more solidified background to my imaginings.

But I will never have been there.

Now, though, two years later, I am here.

More importantly, so is she. And, like most of us I think, she has sometimes questioned whether she deserved this continuation of life. She’s wondered whether she’s owned up to the gift she’s been given. She’s felt that she’s squandered it, that someone else should have been chosen.

And this is why I’m here.
Because I’ve been there.

No, I’ve never had a transplant. Hell, I still have my tonsils and my appendix.

But I’ve questioned the continuation of my life so frequently that I know the answer.

And the answer is that it’s not my question to answer, or at least not entirely.

And so, Ashley, I have an answer for you:

Yes, you’re worth it.

Love you, babe.
Happy Re-birthday.

  1. Still unsure of the hyphen placement here. Double-lung transplant seems correct grammatically, but double lung-transplant seems correct operationally.a Any advice is welcome.
    1. Pardon the pun.
  2. The result her having cystic fibrosis.