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!

 

 

 

 

 

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11 thoughts on “UN-Tethered

  1. You are fortunate to be able to tolerate the concentrators, and many have lung conditions where they can. I am one of many with horrific damage done and progressive diseases from a toxic chemical inhalation over 26 years ago and there is no recovery only a progression that liquid d oxygen which is nearly 100% pure versus the @90% from the concentrators slows the progression down so that life expectancy now from this kind of injury has increased from 1 to 5 years to decades of being alive, but dependent on the pure oxygen.. without oxygen I die in a few days as the sat rate goes to 0% and extremely painful with permanent heart and other damage has occurred the few times I did not have the oxygen. , but with the liquid oxygen I maintain a 98% saturation rate so over all organs do not fail.
    Be thankful if the concentrators work for you as the propaganda is out to say they will for all of us. For me,they are life threatening for as the less than therapeutic dose but also within a 1/2 hour lungs are badly inflamed and pneumonitis and asthma and continued use can bleed out from the inflammation on from the low levels of ozone and other pollutants that get sucked deep into the lungs. that most tolerate but the increasing number , like me with toxic exposures cannot and am approved by three health plans for the liquid oxygen which I have now been no for over 20 years as the accepted medical protocol for these kinds of injuries. BUT TOO MANY ARE NOT GETTING THE TREATMENT THEY MEDICALLY NEED. PER THE EXPERTS. The three plans are federal Blue Cross Blue shield .,federal workers comp and Medicare all have me approved for life for the liquid oxygen for life. Not every lung diagnosis is treated the same. There is a real pressure on to not make this medical fact known. and many are caught I real DEATH PANEELS RIGHT NOW OVER THE FDA REFUSING TO RECOGNIZE WHAT SOME STUDIES NOW SAY IS OVER 11 MILLION PATIENTS WITH DIAGNOSES SIMILAR TO MINE WHERE PARTS PER BILLION, NOT MILLION CANNOT BE MEDICALLY TOLERATED DUE TO THE DAMAGE DONE IN THE INTITIAL INURY AND THE ROGRESION OF DIASESE;. You are truly fortunate to have been able to tolerate the concentrator as the FDA THINKS ALL OF US SHOULD BE ABLE TO AND MEDICALLY MANY OF US CANNOT. AND COMPANIES LIKE LINCARE ARE REALLY BEING COERCED INTO PROVIDING THE CONCENTRATORS INSTEAD OF THE LIQUID OXYGEN. Linda Joy Adams

  2. Thank you for writing this. I am pre-transplant awaiting my number (any day now) and I am right at the cusp. I can rest on only 4 LPM, but to move and exert I jump to 9 or 10 LPM now. So I am struggling to figure out a solution to stay home and still exercise to keep muscle tone. My oxygen provider no longer provides liquid oxygen reservoirs and I have called all morning and can’t find anyone who does. So frustrating. Your post helps me keep looking for a solution! Thanks again.

  3. Took me a while to read this one but oh what glorious news!! So much quieter now too in your home I bet!! We couldn’t be happier for you Lori!! So thankful to be part of this journey and covering you and your family in prayer!!

  4. I just reread the “Waiting Waltz”–my how a few weeks can change a lot. And now we are all rejoicing that you no longer have to live in the hospital, or even be at home surrounded by tanks. I’ll bet it felt like living in a submarine.

    You ran the race….you fought the good fight. Praise God!

    Love, Sharon

    • Yesterday was 9 weeks post transplant. My mind has finally accepted that my new lungs work and I am feeling more and.more normal everyday! Praise God indeed!

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