My New Normal

I spent a good part of this afternoon completing an email interview with the website PatientsLikeMe (PLM).  PLM is a health information sharing website for patients and caregivers.  I use this website to track treatments, labs & tests, my hospitalizations, and even my weight.  PLM also offers an awesome, illness specific, social support system.  I've also been involved with research studies sponsored by PLM and pharmaceutical companies.

One of the interview questions included the request to "Tell us what your new "new normal" is like."  Great fodder for a new blog post.

Before describing my "new normal", I should probably explain my normal with advanced lung disease.

Life before transplant revolved around supplemental oxygen and monitoring my blood oxygen levels pretty much continuously.  Our office in the house was converted into the oxygen room, filled with a high capacity oxygen generator, an attached oxygen compressor for filling my oxygen tanks, a large emergency oxygen tank for when the power went out, and lots of portable cylinders of various sizes.  I had oxygen supply tubing strung on the walls so I could reach anywhere I wanted to go in my home, plus another 100' that I hooked up to when I wanted to go outside and enjoy the sun for awhile.  A trip to the store, our out to dinner involved ensuring we had enough tanks packed to make sure I had enough oxygen to last the trip, plus more for just in case.  A car trip out of town was a major event, and a flight took at least a month's pre-planning involving my medical team, the insurance company, the O2 supply company and the airline.  When you have pulmonary fibrosis, oxygen is life.

That all changed with my new lungs, and what a nice change it is.  I no longer require supplemental oxygen at all.  As a matter of fact, as I sit here typing this my blood oxygen reading is 98 to 99%.  One of the coolest things to happen after my transplant involved my blood oxygen.  When I had Idiopathic Pulmonary Fibrosis (IPF), any exertion would cause my oxygen levels to go down.  Sitting on the couch with my oxygen set at 4 liters per minute (lpm), my reading could be 96 or 97%.  If I stood up and went to the restroom without increasing my oxygen flow, my readings would drop into the low/mid 80's.  To exercise at all I had to turn my supply up, often to 10 lpm.  If I wanted to walk around our slightly hilly neighborhood, I had to use a regulator that I bought off of ebay to raise my flow even higher.  Exertion equaled lower oxygen levels.  Shortly after the transplant I noticed that my general O2 levels sitting on the couch without supplemental oxygen was 96 or 97%.  When I got up to walk or exercise, my oxygen levels increased, often to 100%.  That was so awesome, and a great incentive to get my butt up and walk around.   Now my oxygen is fairly consistent no matter what I'm doing.

My new normal does include a fairly strict routine for meals and taking my medications.  I take over 40 pills a day split up into 6 doses each day.  Half of the medicines help prevent rejection and infection, the other half are medications and supplements that counteract the side effects of the first.  This has all become a routine and is easy to keep up with.  I sort my meds once a week and am good to go for the next 7 days.  As a matter of fact, today is pill sorting day.

Another important aspect of my new normal is avoiding infection.  The anti-rejection meds suppress my immune system which increases my risk of infection.  Not only is the risk in catching a virus or infection increased, once I get sick, I get really sick.  So I take precautions.  During cold and flu season I avoid large groups of people.  I grocery shop in the off hours, and take full advantage of the sanitizing wipes that stores are now offering in the shopping cart areas.  I often wear a procedure mask if out and about where infection is possible.  We take care with food hygiene and sanitation at home.  These are all habits that we have developed and are now easy to follow.

The best part of my new normal, is that it is pretty much that, normal.  I can breath.  I can go for a walk around the neighborhood or the mall without dragging along my tanks and tubing.  I can walk over 10,000 steps a day... and I can breath 😊  My new normal is pretty awesome.