PLM Interview: No Oxygen!

No_OsThe passionate and dedicated folks at PatientsLikeMe have followed my journey almost as closely as I have. Recently, they asked me to share my transplant experiences from getting “the call” to rehab and recovery.

If you haven’t checked out PLM yet, I strongly recommend you do, starting with this interview!

 

“No Oxygen”

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)  Read the full interview

 

Advertisements

Pink, Shiny and Perfect!

post-tx

Look Ma, no hose!

Seven weeks ago today on April 15, I had a double lung transplant at Barnes-Jewish Hospital in St. Louis. And what an amazing, confusing, awesome, scary, thrilling, crazy, frustrating, inspirational seven weeks it has been.

I will dedicate a series of posts to my transplant experience. And yes, I will be giving you all of the gory (and not so gory) details.  On this, my first post following my transplant, let’s dive in at the beginning — the Call and the Surgery.

A little background first:

I’d been in the hospital for about a week, trying to stabilize after an exacerbation of my IPF. I was on the Optiflow, a special machine that heats and humidifies oxygen, at a flow equivalent to 20 liters. Moving required the addition of another 15 liters via E tank.  The Friday before transplant, my doctor had basically given me 3 to 6 months. In short, I was fading fast.

At the same time, we were discussing plasmapheresis, a procedure that runs the blood through a machine to remove and temporarily suppress the production of antibodies. My heavy antibody load, which ruled out 78% of the general population as potential donors, was making it difficult to find a good match. Pheresis was a 50-50 shot, but it was the only option we had left to try to improve my chances for transplant. When I think back now, I wonder why we agonized over this decision — it should have been a no-brainer!

The Call

As it turned out, I never went through pheresis. About 10 minutes before I was to start the procedure on Monday, April 14, my nurse Leann came in and told me, “We might, might, might, might, might have a donor for you.” (Yes, there were 5 “mights”. I counted them.)

The moment I heard there might be lungs for me.

The moment I heard there might be lungs for me.

When Leann walked in, I was finishing up pulmonary rehab and Yvonne, my therapist, had just quipped, “Either I’ll see you tomorrow or you’ll be getting new lungs.” Yvonne was just one of many little Divine Messages that came through during that life-changing 24 hours.

The news sent an electrical current ripping through my body, from the top of my head to the tips of my toes. My first comment was, “Really?”, followed by a huge grin. Not exactly the brilliant statement I’d dreamed about, but I was caught completely off-guard. I looked over at my husband in disbelief, then quickly took a deep breath and reminded myself we had a long way to go before those five “mights” became the real thing.

An hour later, Leann announced we were moving forward. I burst into tears and made a soggy mess of my husband’s shoulder. Though we were far from a solid “Go”, we were on our way to finally realizing what we’d been working toward for so long. At the same time excitement and emotion overwhelmed me, my heart broke because I knew someone had died suddenly and their family was wrestling with one of the most difficult decisions they would ever face. I bowed my head to pray — for them, for my donor, for my family and for me.

Waiting_1

Homework helped pass the wait.

I went down for pre-transplant testing — blood tests and a chest x-ray.  And then we waited. About 10 p.m., I learned that I would be going down to surgery at 2 a.m.  It was a go.  Another miracle. They’d found a donor who had almost no antigens — my antibodies suddenly were a non-issue.

The next four hours were a blur of texts back and forth to my family on the West Coast, as well as prayers and good wishes from my Facebook friends across the country.  Two a.m. finally came and we headed downstairs.

 

The Surgery

pre-op

Waiting in pre-op. The family is sitting in front of me, munching away!

I was the only patient in pre-op, so my family was able to sit outside my cubby and chat with me. What I remember most is the sound of munching — they were chowing down on chips and soda. I, of course, had had nothing to eat or drink since around 2:00 that afternoon. My stomach rumbled mercilessly. But the mood was upbeat, and when my surgeon arrived, he announced that he’d had a good night’s sleep and a full breakfast.  He was ready to go.

Surgery was delayed three times as more transplant teams arrived at the donor site. The generosity of my donor family cannot be overstated. Because of their selflessness, they turned a profound loss into a second chance at life for many others. I am eternally grateful!

All the instruments, prepped and ready!

All the instruments, prepped and ready!

I went into surgery sometime around 6 a.m. on Tuesday, April 15. I’m a little fuzzy on times and details because by then they’d given me a happy shot.  I remember sliding over from the stretcher to the operating table. One team member read off the names of everyone there and what their job was (they tape the entire procedure). And then they placed a mask over my face and in seconds I was out. I’d sent a disposable camera into the OR with my surgeon, the amazingly gifted Dr. Bryan Meyers. The photos below are from my surgery:

Heart/lung machine

Heart-lung bypass machine

The heart-lung bypass machine.  In some transplants, they can let one old lung do the breathing while the other is removed and a new lung transplanted. My old gaspers were in such bad shape they had to use the bypass. I received my very first transfusion because the bypass requires extra blood volume. Technology is simply amazing!

Crappy lung

Crappy lung

My diseased right lung. It’s amazing that something this dark and shriveled could process any oxygen at all. Can you say “God’s perfect timing”? I couldn’t have waited much longer.

Warming Up 2

Pink, shiny and perfect new lungs!

My shiny new lungs! The one at the bottom is still covered in its protective cloth. They’re so pink they almost glow! Angie, my scrub nurse, said she’d never seen lungs so pink!

Dr. Meyers performing magic!

Dr. Meyers performing magic!

Dr. Bryan Meyers implanting my shiny new  lung. This photo brought tears to my eyes — at last, no more gasping. This moment marked the beginning of a brand new life for me!

Thumbs Up!Angie gives us the thumbs up — all went well!  I know this is me because I recognize the feet!

Old lungs packed for research

Old lungs off to the research lab.

My old lungs, ready to go to the research lab. I donated them in hopes they will help researchers discover better treatments or even a cure for pulmonary fibrosis. The small container at the top includes unused pieces from my new lungs. Since my donor was 6 feet tall and I’m 5’4″, Dr. Meyers removed the upper lobe of my new left lung and did a wedge resection on my right. The day after my transplant, Dr. Meyers went back in to remove some packing and clean up any blood clots or incidental bleeding. This is standard procedure at Barnes in many lung transplant cases. He saw that my right lung was still a little too big, so he removed a second wedge. I’m happy to say that they fit perfectly now and are working beautifully.

By 1:00 p.m. I was out of surgery. The whole thing took about 6-1/2 hours.  I remember nothing until they removed the breathing tube on Friday, April 18 — Good Friday! But that’s a story for another post…

Before I go, I want to thank everyone who prayed for me, sent me notes of encouragement and positive energy, and offered advice and insights from the perspective of “being there.” I couldn’t have done this without you. And to my donor family, thank you for giving me life. You are and will remain in my heart and in my prayers forever.

 

 

 

Roid Rage

PrednisoneI’ve been on high-dose prednisone to  treat my pulmonary fibrosis since I was diagnosed two years ago. I don’t have a moon face or ankle swelling often associated with prednisone use, so I always figured I’d gotten off easy when it comes to steroid side-effects. Silly girl. I should have known nothing is easy or simple, especially for me.

When I broke my ankle two months ago, we discovered that prednisone has been eating away at my bones.  My teeth have suddenly become quite sensitive, another prednisone by-product. And now, the greatest gift of all — lousy healing. As the final cast came off my ankle last week, the top three inches of my incision was a gaping wound. Okay, gaping may be a bit of an exaggeration.  It’s maybe a quarter-inch wide and an 1/8-inch deep. Not huge, but not healed either.  Bone Doc wanted to take me back to the OR to debride and re-close the incision. But that would have required at least a regional block (too deep for a local) and more futzing with the Optiflow, not to mention increased risk of transplant-thwarting respiratory issues.  So, we opted to go to the Wound Care Center at St. Luke’s.  I’m so glad we did!

Wound Doc says it looks like it will heal fine — we just need to start using the appropriate dressing and give it 2 or 3 months. That’s fine by me. Every couple of days I goop the wound with polysporin and apply a hydrocolloid dressing.  The doc says the waterproof dressing creates a nice moist, warm environment to encourage granulation (what my mom used to call “proud flesh”), which forms the underlayment for new skin. The prednisone will slow things down, but healing will occur. Whew!

The other disappointing news from last week’s de-casting session was that I am still non-weight bearing on the ankle. Thankfully, Bone Doc says I can start putting my Frankenboot to use next Frankenbootweek, just in time to help in the kitchen for Turkey Day. But he wants me to hold off on physical therapy for a little longer to give my roid-ravaged bone some extra healing time.

My loathe/hate relationship with prednisone continues. But despite the bumps it’s added to my road, I still have much to be thankful for.  And, after my November 26 visit with the transplant team at Barnes, I hope there will be even more to celebrate.

Tips for Dealing with Steroid Side Effects 

  • Up your calcium intake to at least 1500 mg a day with a combination of calcium supplements and calcium-rich foods such as milk, cheese and yogurt. Remember to up your Vitamin D intake, too — 400-800 IU daily.
  • Weight-bearing exercise (like walking) will help stabilize bone mass and burn calories.
  • Steroids affect metabolism and fat distribution, increasing appetite and adding fat deposits to the abdomen and neck. Focus on eating a healthful low-fat, low-calorie diet to counteract weight gain.
  • Fluid retention is common with steroid use. Reduce (or eliminate) salt-use in cooking and at the table, and look for low-sodium versions of typically high-sodium foods such as: chips and crackers, soups, prepared foods, canned foods, dressings and condiments, and restaurant meals.
  • Steroids suppress the immune system, so get a flu shot, wash your hands frequently, and avoid anyone who is coughing or sneezing.
  • Tell your eye doctor and dentist about your medication, since steroids can cause cataracts or glaucoma as well as increased tooth sensitivity.
  • Other side effects to watch for and discuss with your doctor:  hip pain (may indicate aseptic necrosis of the hip joint), insomnia, mood changes, elevated blood pressure, elevated blood sugar.

In the Spotlight: My “Patients Like Me” Interview

Recently, I was interviewed by PatientsLikeMe.com, a wonderful resource site for people dealing with a wide range of health issues. Membership is free and the site is loaded with valuable information indexed by disease,  research news, charts to track your personal progress, as well as a warm and supportive community.  Check it out and let me know what you think.

Reblogged from The Value of Openness: The PatientsLikeMe blog

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who starting blogging about her journey back in October 2011. Her blog is called Reality Gasps and she balances stories of her daily struggles with dashes of humor that can make anyone smile. If Lori sounds familiar to some of you, it’s because she’s also part of the PatientsLikeMe community.  She recently took some time to talk with us about why she started blogging, the difficulty in finding a diagnosis and how connecting with others has positively impacted her life.

Read the whole interview at Patients Like Me blog.

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!

Retooling My Attitude

tool_belt

“If the only tool you have is a hammer, you tend to see every problem as a nail.”

Abraham Maslow (1908-1970)

The right tool makes every job easier, whether you’re a cook or a carpenter, a seamstress or a surgeon.  And sometimes, the simplest tool can make a world of difference.

A few days ago I received a grabber as a gift.  You’ve seen them advertised on TV — a trigger at one end operates a claw mechanism at the other.  You can get them as fancy as you want — foldable, extendable, super heavy duty.  I opted for off-the-rack at Walmart, less than $15. But what a little miracle it is!

You see, the stiffness and scarring caused by my disease limits my lung capacity.  That’s why any activity causes my O2 saturation to drop like a rock.  When I bend over, I get even more breathless because my innards compress against my lungs, further reducing my breathing capacity.  This makes simple tasks, like picking up clothes off the floor, a feat that requires planning. Bending twice makes me dizzy. A third time requires a rest break and pursed lip breathing.  grabber

As a result, I let things pile up.  I’d kick clothes into a mound for several days and then gather them up all at once. Errant kleenex and nebulizer ampules dotted the floor around my chair.  When I did get around to picking up, it took half a day of crawling, reaching, gathering and breathing breaks to finally see the carpet again. Not anymore!  With my grabber, I spend less than 30 seconds each morning picking up my room without a huff or a puff.  If something slips off the hanger in my closet, no worries!  Even the long lost socks behind the dryer are back in play.

I never realized something so simple could have such an impact on my day.  Breathing easier is a definite plus.  But I think the biggest benefit is that I feel just a little more in control. When I walk into my bedroom, it isn’t littered with the detritus of my disease.  It’s neat and clean, no longer screaming a constant reminder of the little things that seem to get harder and harder to do.  I know that my disease will take its course, there’s really nothing I can do to change that. But I can affect my attitude and my outlook — and those are the most powerful tools I have.