UN-Tethered

CIMG2308When the doorbell rang, I was as giddy as a little kid. It was a gorgeous afternoon, just perfect for taking back one more piece of my independence.  At the door was TJ, my awesome oxygen dude and a twice weekly visitor for most of the past year. But TJ wasn’t dropping off this day, he was picking up!

I’d been staring at empty liquid oxygen (LOX) reservoirs and silent O2 concentrators (two of each) for nearly two months, and it was seriously bumming me out. While not

TJ wheels one of my liquid O2 reservoirs!

TJ wheels one of my liquid O2 reservoirs!

long ago all that equipment kept me alive, it quickly become an unwelcome reminder of the struggle that nearly ended me. Since I’m not a dwell-on-the-past kinda person (at least not anymore), I couldn’t wait to get rid of all those tanks and machines so I could fully focus on what’s ahead: rehabbing my lungs and body, eating right, staying active and living the kind of life that will make my donor and his family happy they made the decision they did.

It took me a little longer than most to get rid of the actual equipment. Barnes Jewish, my transplant center, requires patients to keep their home oxygen equipment until after their one-month bronchoscopy. But I had to hang onto my relics until my team could schedule an overnight pulse oximetry test. It’s a simple test — my oxygen company dropped off a special pulse oximeter that recorded my sats while I slept. I don’t know the actual results yet, but I do know that my sats still drop at night, so the nocturnal Os continue (for now).  I did, however, convince my team that a home system designed to deliver up to 35 LPM was kinda overkill (not to mention expensive!)photo 1(1)

So when TJ wheeled the last concentrator out the door, I couldn’t help but shout So long huffers! He left a smaller, quieter 5-liter concentrator to supply the 2 LPM I still use at night —  my “sculpted lungs” have a little extra healing to do. But 2 liters is a whisper after the 15-30 liters I had blasting in my nose before.

Every day I see improvement.  Every morning that I wake up and take a deep breath is another miracle. And every day I give thanks for the many people who have worked so hard to keep me going: the folks at Lincare, who created an O2 system that could feed my need; my pulmonologist, Dr. Dan Potts (and Linda), who recognized my IPF immediately; everyone at St. Luke’s Respiratory Therapy and Pulmonary Rehab, who problem-solved with me and accommodated me in every way; the incredible team at Barnes-Jewish Lung Transplant Center, whose expertise and compassion are beyond compare; and my supporters, who have showered me with prayer, good humor and lots of encouragement. This little victory belongs to all of us!

 

 

 

 

 

Is This Progress?

ImageIs this progression or an infection?  A reaction to the weather or some other episode? These are the questions I ask every time my cough gets worse or I have more shortness of breath, or my sats just won’t stay up.  They’re the same questions everyone with PF asks. Because this is a ninja disease.  You may be stable for months, years even, and then BAM!  Without warning, your condition worsens almost overnight.

That’s what I’m wrestling with right now.  Is this progression, or just another infection?  I was in the hospital with bacterial pneumonia in early July — 6 days, including 2 in ICU.  But I responded quickly to treatment and came home almost at baseline.  Almost, but not quite.  I had been resting on 6 LPM and found I was more comfortable at 7 LPM.  And before the infection, I’d been moving on 10 LPM, but after I definitely needed 15 LPM.  My doc told me not to worry; it takes a long time to fully recover from pneumonia, and since this was my third bout, it would take longer still.

I settled in for a quiet summer of resting and steering clear of potential infection sources (i.e. crowds!)  But I still felt like I just wasn’t getting better.  We played with my prednisone but even that didn’t help.  Then, two weeks ago, I was having trouble making it down the hallway without getting short of breath. My sats weren’t holding, either, so I kicked up my oxygen another notch — 8 LPM.  When I woke up with a productive cough (my cough is ALWAYS dry), I called my doc.  He put me on oral antibiotics and bumped up my prednisone again.  After a week of antiobiotics, I wasn’t coughing up gunk anymore, but I still felt lousy.  And my sats were falling again.

As it was, I had maxed out the oxygen system I had available at home.  My 10 liter concentrator only yields 10 LPM if I use a 7 ft. hose — that’s the same length you use with a portable tank.  A 25 ft. hose — which allows me to move around my bedroom and to the bathroom — yields 8 LPM.  My portable liquid tank goes to 15 LPM, which means that anytime I want to move more than a few steps, I have to use my portable.  I talked to my doc and we added a second 10 liter concentrator.  They are Y’d together and with a 25 ft. hose, I get 16 LPM.  That’s perfect right now — sitting on 16, I can keep  my sats right around 90%.  I still need to use my portables if I want to go anywhere else in the house.  I’ve Y’d two of them together to give me 20 LPM so I can make it out to the kitchen to eat dinner with the family.  The problem is, at these high flow rates, even liquid portables don’t last long — maybe half an hour at 15 LPM.  I can probably get 45 minutes to an hour when I Y two together (10 LPM each for a total of 20).  That means excursions beyond home are impossible.  I can do doctor visits, but lunch with friends is off the table.

optiflow

MyAirvo/OptiFlow

One of the big side effects of pumping such high O2 levels is nose bleeds, lots and lots of nose bleeds.  Even with a bubbler on the concentrator, my sinuses are parched.  I use Ayr gel and Ayr saline spray throughout the day, which help.  But the assault on my mucous membranes is vicious.  My doctor prescribed a new machine called the MyAirvo to help with this.  I was on one in the hospital (where it’s called OptiFlow).  It humidifies and heats the oxygen, so it is much easier to breathe.  It’s also quieter because you don’t get the “rushing air” sound through the cannula.  On the downside, however, the tubing is only 3 ft. long, so I have to switch off to a portable to do anything.  And I will need to add a third concentrator to get enough oxygen flow to keep my sats up.  Right now, when I use the MyAirvo, I have to Y in a 3 LPM from my liquid to keep me sats even close to 90%.  And then there’s the machine rental itself.  It’s an expensive piece of equipment, and it’s so new that most insurance companies (including mine) don’t cover it yet.  So I’m deciding whether this is right for me just yet.

When I look at my oxygen numbers, they just seem ridiculous.  From what I’ve seen, most people don’t use oxygen at this level until the bitter end.  But I’ve always seemed to require higher O2, and my body still feels like it’s raring to go (okay, not raring, but eager).  I’ve had a couple of crazy instances where my liquid ran out and walked 20 feet or so without O2 — I crumpled on the spot like a marionette without strings.  I was still conscious and talking, and as soon as I got oxygen and brought my sats up, I was up walking again like nothing happened.  At least for now, I’m only limited by the Os I can get up my nose.  I pray the body hangs in there with me.

Travels with My Reservoir … Or Gasping Across State Lines

Image For more than two decades, my family has made an annual pilgrimage to Sanibel, Florids. It’s our own slice of island paradise for one week a year — sun, sand, shelling and the luscious smell of sea air.  In the past, we also flew to Sanibel to maximize our short time there. But, since my diagnosis with PF, our travels have grown increasingly complex.

We were still able to fly for our first visit post biopsy. I rented a portable oxygen concentrator (POC) that worked for both the flight down and my activity while on vacation. At the time, I didn’t require oxygen while at rest, so the relatively low flow rate of a POC was just fine.

Six months later, we made a second visit to Sanibel. This time I was on oxygen 24/7, but my requirements were still fairly low — 3 LPM (continuous) at rest, 6 LPM (continuous) with activity.  Since portables offer only pulse settings at 6 LPM (and only a couple of models go that high), I knew a POC would not work for the entire trip.  We had to come up with a different alternative, and it was immediately clear that we had to drive.

While my husband and kids psyched themselves up for a 21-hour drive, I worked on piecing together my vacation Os plan. Usually, your home provider works with a provider at your destination to coordinate services.  My home supplier, however, is a local company with no ties to national suppliers. They said they were unable to arrange any support — I’d have to carry everything with me.  So, I rented a POC that we plugged into the car and provided me with a continuous 3 LPM for the drive.  We also brought my full-size 10L oxygen concentrator plus a home fill unit and 4 bottles of varying sizes.  I filled the bottles before we left, and used those for meal and potty stops along the way.  Once we arrived, the full-size concentrator met my needs at the condo, and kept my bottles full for jaunts around the island. All in all, it worked beautifully.

This year however, my oxygen needs were much greater — 6 LPM at rest and 8-15 LPM with activity. The same plan wouldn’t work. I still use my 10L concentrator at home, but I’ve graduated to liquid O2 for my portable needs because I get much more time out of a liquid portable (about 3 hours). Liquid isn’t perfect, though.  It boils off over time, so a portable bottle that was full the night before will be only half-full in the morning. So, filling a bunch of liquid portables for the trip down wouldn’t work.  Taking my full-size 41L liquid reservoir wasn’t an option either — it stands about 4 feet tall and weighs in close to 200 pounds when filled. There was no way we were going to heft that breathy beast into the minivan, and then drag it up a flight of steps to the condo in Sanibel.

Not my van, but this is what it looked like.

Liquid reservoir, concentrator, E tanks for reserve

Still, liquid was the only way to go to meet my breathing needs for the ride down. I borrowed a  21 L reservoir from my home supplier. It’s about the size and shape — and looks amazingly like — R2D2, and holds enough to last me almost 48 hours (1 liter of liquid O2 converts to 814 liters of gas).  Now, I just had to find someone near Sanibel to refill the reservoir during our week’s stay.

After a few calls to oxygen suppliers in the area, I began to understand why my home supplier had given up the year before. No one wanted to supply oxygen to someone who wasn’t their patient, especially someone from out of state. Many said they didn’t offer liquid O2. Finally I tracked down one supplier that grudgingly agreed to refill my reservoir, if and only if I gave them 24 hours notice, arrived at their location between 8 and 8:30 in the morning (the only time their driver was available), and agreed to pay cash.  A girl’s gotta breath, so I said yes.

When I called to make my final confirmation two days before the trip, the person who answered said they had no idea what I was talking about. Panic started to dance around the edges of my brain. After a bit of begging, she agreed to the previous plan.  But their office would be closed both Monday and Friday, and she couldn’t guarantee that the driver would even be there that week. With some more begging, I got the name of their O2 supplier.  While commercial suppliers can’t service patients directly, maybe they could suggest another retail supplier. I got two names and an unsolicited promise of further help if those didn’t work out. Finally, a glimmer of that famous southern hospitality! The first company I called was Rotech, and Todd said he could fix me up no problem. They even drove out to island to pick-up and deliver my refilled reservoir, and let me borrow one of their reservoirs for our stay. (Rotech didn’t show up on my initial internet searches for local suppliers — work on your SEO guys!)  The trip was a success, and breathed easy the entire time.

Traveling is getting more complicated and requires a lot more planning, but it is still possible. With a little tenacity (and a bit of human kindness), I know I’ll be able to continue traveling as long as I have the strength to go.  I look at my oxygen as I do eye glasses, a pacemaker or a wheelchair — it’s a tool that helps me live my life to the fullest.  It’s my choice, not my circumstance, that dictates whether I use the tools available.  And I choose to enjoy what I have with whatever support makes that possible.

TRAVEL TIPS:  Start early to make plans for traveling with oxygen — at least 4 – 6 weeks out:

  • Airlines do not allow oxygen in liquid or gas form. You can, however, use a portable oxygen concentrator — contact your airline to get specifications and necessary paperwork.
  • If you use a national oxygen supplier, they should be able to coordinate your oxygen needs at your destination, and run the costs through your insurance. Keep a copy of your oxygen prescription with you at all times.
  • Make sure to plan for more than your estimated travel needs (airlines require 150%) so you will be covered if you get stranded or waylaid.
  • Call to confirm before you leave.
  • Plan early, then enjoy yourself!

Tethered

I use supplemental oxygen 24/7.  That means wherever I go, I have a cannula strapped to my face and a plastic tube connected to my oxygen source.  When I’m on the go, I use a short tube attached to a portable oxygen tank. But at home, I have a 100 ft. “umbilical” that snakes between me and my oxygen concentrator.

My oxygen supplier frequently warns me I shouldn’t use anything longer than 50 ft. because the longer the tube, the lower the O2 flow.  But with my 100-foot tube, I’m free to roam just about anywhere in my house. So, I’ve worked out a compromise — for bed, I plug in with a 25 ft. tube and save the ultra long cannula for daytime.  Convenience has its price, though.  Like when I get myself all wound around the island in the kitchen.  Did I go right or left?  I can’t tell you how many times I’ve gone to the kitchen for something and started back out, only to have my head snapped around as the cannula pulls tight. The kids still smile when they see me backtrack and do a reverse circuit.

Feet pose another obstacle.  It’s not tripping (for me at least) so much as it is standing, as in, “please move, you’re standing on my cannula.”  Standing on my tubing doesn’t hinder the oxygen flow, but it does stop me in my tracks. I thought when I switched to a green high-flow cannula, this little annoyance would be rectified. To my surprise, the family tromps even more on the highly visible green tubing.  My guess (hope) is that they’ve grown so used to my O2 set-up, they don’t really notice the cannula anymore.  Or it may be self-defense on their part.  Whenever my cannula goes taut, I give it a yank, figuring it’s just caught around a corner.  Recently, I’ve been hearing squeals when I tug on my tubing. Seems I’ve been tripping up the kids a lot more than I realized!

Then there are the frequent snarls. Everyone has grown used to me standing in the hall outside my bedroom and growling as I work through another knot. My tubing gets caught on drawer pulls, chair legs and just about anything left on the floor. The dog, of course, takes it all in stride.  He’s become quite adept at disentangling himself whenever my cannula slides by.  And I usually manage to stay fairly unencumbered myself…except for that time I twisted one too many times while making the bed and did a face plant into a pile of pillows. Yes…there were witnesses. We all burst out laughing.

I’ve often thought a portable tube reel (kinda like those retractable dog leashes) would solve a lot of my problems. Unfortunately, nothing like that exists and I am no engineer. Of course, the real answer is “tubeless” oxygen, like wireless Internet.  Oh wait, that’s called “normal breathing”.

In the meantime, while I still have these lungs, I’ll be tethered.  But being tethered isn’t so bad.  The limits of my cannula have forced me to slow down and refocus. I spend a lot of time talking and hanging out with my kids — unhurried and undistracted.  And I’m closer to my brothers than ever.  It’s amazing what happens when you stop thinking about where you should be and concentrate on where you are.

I’ve heard lots of people say they are “grateful” to their disease for waking them up to what’s important in life.  I’m not grateful to IPF — it sucks big time.  But it is part of my life,  a big honking bump in the road. And like all the other bumps, twists and turns I’ve encountered, I’m trying to learn as much as I can from the experience.  So far I’ve discovered that I am surrounded by amazing people eager to help — I just didn’t notice until I slowed down and let them in.  And I’ve realized that if you get stuck heading down one path, you can always backtrack, unwind yourself and try another route.

Photo courtesy of 123rf

My New Best Friends

   I came home from the hospital with two  new buddies in tow.  I’d like you to meet them.  That’s Stephie on the right and Phil on the left.  Stephie is named after a girl I remember from grade school who used to imitate Marilyn Monroe’s breathy voice, complete with quivering lip. We all thought she was sooo grown up. Stephie does a pretty good Marilyn imitation too, with a low steady hum punctuated by a rhythmic huff-chuff.

Stephie is my oxygen concentrator.  She pulls oxygen from the surrounding air, concentrates it to 93+% pure and sends it flying down a 60-foot clear plastic tube to my grateful lungs. The lengthy tube allows me to wander almost anywhere in the house.  It even reaches to the laundry room door, but, unfortunately, it’s not long enough to reach the washer and dryer.  Bummer (heh heh).

Phil is my home fill unit.  He pumps fresh oxygen into my pony bottles for Os on the Go.  They’re actually called portable oxygen canisters, but I think pony bottle sounds much cooler. And believe me, you need help with the cool factor when you’re wandering around with a rather unstylish black nylon shoulder bag and a cannula strapped to your face. I’m grateful for the portable supply though.  The house is beginning to feel quite small, so I look forward to my daily walks around the neighborhood, as well as trips to the doctor and the occasional restaurant.

At this point, my excursions leave me pretty fatigued.  But my doctor reminded me during my appointment last week that I still have a good two weeks of healing ahead of me.  He also says I probably won’t need supplemental oxygen once I’m completely healed from the biopsy. Yay! I was afraid Stephie and Phil were my new BFFS; instead it looks like they’re just TBFs (temporary best friends).  I know at some point they’ll be back for good.  But I’d like to hold that off as long as possible.

I’m also glad to know that this is not the new normal.  I had a pretty tough weekend.  Any activity left me short of breath, made even more uncomfortable by lots of wheezing and coughing. I’m back on prednisone for the time being.  Please, God, please, heal me fast.