woman-in-wheelchair1Four weeks down and two to go before I get the cast off my ankle and so far it’s been a long, frustrating month.  Since bad lungs and a gimp leg do not play well together, I have been chair-bound throughout the entire convalescence.  When my husband heads to work and the kids leave for school, it’s just me, my grabber and the bedside potty. I’ve watched all the cooking shows I can stomach, plowed my way through half the Alex Delaware series by Jonathon Kellerman, and reached the diamond level on WordHero.  But it’s not the mind-numbing boredom that disturbs me — I know that’s just temporary.  It’s the realization that I am glimpsing a future that is frighteningly close.

Simply standing up to transition from the recliner to my wheelchair leaves me breathless and drops my sats into the 70s. I am now sitting on 20 lpm of oxygen, upping that to 30 or 35 if I do anything.  In short, I have pretty much maxed out what I can get from a home 02 system.  And as a result, I have become beholden to my family for, well, everything.  Meals come when there’s someone here to make them. Thankfully my husband works 10 minutes away and returns home each day to prepare my lunch. Going to the bathroom, brushing my teeth, washing my hands, showering, getting ready for bed — all the basics of “daily living” require a coordinated effort between me and my family.  And while I chafe at the loss of independence, they deal with the mounting stress of suddenly becoming full-time caregivers in addition to everything else in their busy lives.

My expectation is that when I can once again stand on two unencumbered feet, I will be able to move about the house without asking for assistance.  But my disease is progressing faster than I expected.  My pulmonologist urged me to get to Barnes-Jewish Lung Transplant Center as soon as possible, so I’ve scheduled a second evaluation for November 26. I still have about 25 pounds to lose. But as my oxygen needs rise, and my average 02 saturation level dips below 90, the fear is that I may develop heart or other problems that would reduce my opportunities for transplant. The List is my one big hope right now, and I need to get on it!




Image  PF has been an adventure for me in ways I never could imagine.  Not only have I experienced an illness once suffered exclusively by HIV patients (PCP pneumonia), and developed a perforated septum only a serious coke head could appreciate, now I’ve broken my ankle in a fashion befitting a fullback.  The xray above isn’t mine, but it looks pretty darn close to what i did.  And I blame it all on PF — okay, and some stupid choices on my part.

Last week I was up late doing my insomniac routine when I decided I’d get ready for bed and attempt sleep one more time.  I was on my way to the bathroom and noticed the bubbler was empty.  The bubbler is a small bottle attached to the concentrator that humidifies the O2, making it easier to breathe.  I bent over (mistake #1), unscrewed the bubbler and filled it, then screwed it back in place (mistake #2).  I was a little breathless but figured concentrator_cropit was because I’d just bent over (all those innards squeezing against my lungs).  What I didn’t realize was that I hadn’t screwed the bubbler on just right. As a result, the concentrator gauge read that I was getting my full quotient of O2, but a few precious LPMs were actually bleeding out of the bubbler. I took a couple of steps and my sats dropped hard and fast.  I got that hurky-jerky feeling in my arms that signals I am about to collapse…and I did.  Usually I end up on my knees or my rump, but this time I somehow twisted my ankle under me.

When I hit the floor, I splayed my legs in front of me, took one look at the odd angle of my ankle, and yelled.  I don’t think I even said words, I just yelled until I had no more breath.  I don’t think I passed out, because I remember thinking hard about…something.  But it did seem like a long time before the family arrived.  It wasn’t of course, they were there in seconds giving me alternate cannulas and making sure the O2 was flowing. Then I told them about my ankle and everyone gasped. The bone wasn’t sticking out, but you could see the contour of it beneath my skin and it was definitely not in the right place.  A quick call to 911 was followed by a bumpy ride to the ER (ambulances are NOT air-cushioned) with a very nice paramedic.  Xrays showed that I dislocated the ankle and had a spiral fracture of the fibula. Before this, the only bones I’d broken were a couple of toes. Two years of prednisone had weakened my joint and my bone.  Have I mentioned I have a loathe-hate relationship with prednisone?  For all that had happened, there wasn’t much pain. Even when the ER doc put the ankle back into position, it really didn’t hurt (okay, maybe the morphine helped a little there).

The most distressing part was hearing that I would likely need surgery to put the ankle back together.  Surgery is a very scary proposition for me because I can’t be “put under” anesthesia. If I am ever intubated, I will probably never go off a vent  (and never get a transplant).  Which meant this surgery had to be done with me awake.  Dr. Wegman, my surgeon, was one month into private practice when I showed up in his office.  He’s part of a highly respected group recommended by my primary doc, so I figured they would only hire the best.  But I have to admit, I think I scared the new guy a little.  I would be his first “awake” surgical patient.  Lucky for him, I’m actually pretty mellow.  Anyway, as soon as the bone guy confirmed surgery, I called Dr. Potts, my pulmonologist and knight in white coat, to tell him what was going on.  He immediately called the head of anesthesia and demanded the best person for this gasless procedure.  He also called respiratory therapy and set up the Optiflow system for surgery.  Optiflow is an oxygen system that heats and humidifies O2 at flows up to 60 LPM.  I was on 55 LPM for surgery and my sats never fell below 93!

Thanks to Dr. Potts and team planning it all out ahead of time, everything went perfectly.  I had a spinal and epidural that left my lower half completely numb for the ORIF surgery (open reduction internal fixation).  A sterile drape over my face ensured I didn’t have to view the hardware application to my bone (one plate, 8 screws, plus a 9th screw to stabilize the tibia and fibula), and the noise of the Optiflow pretty much left me in my own little world.  I chatted with Dr. Settles, the wonderful anesthesiologist, about college-bound kids and career changes (he used to be an OB-GYN).  And when I hit recovery a few hours later, I didn’t have to deal with that awful grogginess.  I spent the night in the hospital to make sure my lungs were functioning well following the “stress” of surgery.  All was fine. In the morning, I got a quick lesson in the fine art of walkers and headed home.

Now, four days post-op, the hardest thing to deal with is that everything is, well, harder.  Walking around the house on two healthy legs uses a lot less energy (and a lot less oxygen) than holding myself up on a walker with two arms and hopping on one leg.  Even a two-hop transition from chair to wheelchair leaves me breathless.  I can’t bear any weight on my ankle for 6 weeks, so I will be dealing with this for awhile.  I’ve started working with a physical therapist to try to keep the blood flowing and get my muscles to be more efficient in oxygen use. Think chairobics.

In the meantime, I feel like a total invalid. The family freaks if I try to do anything on my own, because let’s face it, there’s a very real chance I could fall again.  And if I break anything else, they might as well just rig me up in a hoist and swing me from bed to bathroom.  Heck, they might prefer that now, but I do have a little dignity left. Not much, but some. Then again, the hoist idea may not be so bad.

The thing I have to keep in mind is that this is just another bump in a very windy, bumpy road. I will heal, and I will go on. And I will heed the lessons I’ve learned:

  1. Trust how I feel, not what I see. The concentrator said I was getting the right amount of O2, but my body told me I wasn’t. Next time I will sit down and take time to figure out what’s going on.
  2. Check the bubbler, check the bubbler, and check the bubbler. The same is true with all of my equipment. Everything is so routine that it’s easy to get careless. But my life literally depends on my oxygen apparatuses.
  3. Be grateful everyday for my caregivers.  My family are the unsung heroes in all of this. People tell me how brave I am, but I wouldn’t be here (literally) if my family wasn’t here to save my sorry ass when I do stupid things. They are brave for living this with me. I love them to the moon and back and will never be able to express just how much they mean to me.
  4. Trust the team. I called Dr. Potts because I wanted to make sure he was in the loop early. Because I contacted as soon as I did, he was able to work out a plan with my surgeon that ensured both of my issues were handled appropriately.

I wonder what the next bump will bring?