This Boot Was Made for Walking

BOOTShe walks! Actually, it’s more like lurching. But the point is, I am up and ambulating under my own power.  In fact, yesterday during my first physical therapy session, I made two laps down the hall and around the living room — about 200 feet.

My joy at getting vertical is tempered only by the realization that breathing and moving seem to be mutually exclusive at the moment. Each lap required a couple of rest stops when my sats dropped to 76. I think a good part of my increased breathlessness is attributable to my sloth-like existence during the past nine weeks. My muscles have gotten lazy and, as a result, much less efficient in using the precious oxygen doled out by my cheapskate lungs. My hope is that as I get more accustomed to moving, my breathing will improve.  In the meantime, walking to the bathroom is a workout, which means more calories burned and that’s a win in the weight-loss column.

One other development that is already helping with my SOB is a medicine change recommended by the good doctors at Barnes.  A blood test showed that I have developed methemoglobinemia, a blood disorder that results when an abnormal amount of methemoglobin is produced. Hemoglobin is the molecule that transports oxygen in the blood, and methemoglobin is a form of hemoglobin that can’t release oxygen. Methemoglobin made up 17% of my hemoglobin — which meant about one-sixth of my blood couldn’t carry oxygen.  No wonder my sats rarely rose above 88!  I stopped taking the errant medicine (dapsone) and my resting sats have climbed nicely to a consistent 91.  I even see the occasional 94!  We’ve replaced dapsone with Mepron to prevent a recurrence of PCP (fungal pneumonia).  It’s a liquid, which is inconvenient but it’s way better than having oxygen-resistant blood.

I think my family may actually be more excited about my mobility than I am.  They no longer have to wheel me to bathroom.  In fact, anything within my room is now my responsibility — filling my portables, straightening up, putting away clothes. Soon I will be responsible for getting my own water, and will probably develop a new understanding for why my beverage requests so often elicited groans.  It’s okay, though. The more I do, the more I can do — and the longer I can do it.


One Step Closer

I just walked in the door from my day-long appointment with the transplant team at Barnes-Jewish, and I couldn’t be happier!  I was down another 6 pounds, which means I only have 17 pounds left to lose.  Once I hit my goal weight, they will do a heart cath to make sure my heart is in good shape. If the cath clears me, then it’s just a matter of final blood tests and I will be on the list!

At the rate I’m losing now, 17 pounds should take 4 to 4-1/2 months to lose.  The doc figured my current condition would put me on the top half of the list, where the average wait time is 150 – 160 days. So, it’s possible this time next year …  okay, I’m getting ahead of myself. There’s still a lot of road to walk before I get “the call.”  But today made me more confident than ever that this will happen

The next big hurdle is making it through the holidays while continuing to lose weight. Our family tradition includes making cookies, candy and pizzelles,  and I’ve always volunteered to dispose (snarf) anything not quite up to giftable standards. This year I am keeping an image firmly planted in my mind — an old-fashioned balance scale with a pair of pink shiny lungs on one side and a holiday treat on the other. That’s the test everything going in my mouth has to pass.

Thanksgiving is in two days and you can bet I will be counting many blessings this year!

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.