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Lung Transplant Approval, an Unexpected Journey

First published on Travels with Tam in August 2013, this is the blog series written during Tam Warner Minton’s husband’s health crisis, which eventually led to a double lung transplant, and a continuing recovery. Part 3 will be published on Midlife Boulevard in the coming weeks.

(August 16, 2013)

How did we get here?  Seven months ago my husband and I were in the Revilligadoes Islands south of the Baja Peninsula, diving with hammerheads and Manta rays….6 weeks ago Randy was still walking 3 miles a day…  Today, this morning, the University of Texas Southwestern University Hospital Lung Transplant team approved Randy for lung transplant.  My head is spinning like Linda Blair’s in The Exorcist.

How did we get here? Three years ago Randy was diagnosed with a strange lung disease we had never heard of: Sarcoidosis.  We were told that in 90% of cases sarcoidosis clears up, probably nothing to worry about. I was concerned, but the pulmonologist was pretty blase’ about the whole thing.

Lung Transplant Approval, an Unexpected Journey

Tam, Randy and their children

 

Fast forward a year and a half.  Randy is worsening.  Pulmonologist still feels that it is probably not at a point where it should be treated.  Another six months….and Randy’s lung capacity is at 59%, from 80%. Well, guess we should start steroids now.  I become so incensed that it took everything in me not to scream at the doctor.  So, we took off for Denver to see a top Sarcoidosis Doctor. He did not believe Randy had Sarcoid…he suggested a lung biopsy at University of Texas Southwestern Medical School in Dallas. We couldn’t get into see anyone at University of Texas Southwestern until MAY.  Randy had to wean himself off of prednisone before the biopsy, and it took two weeks for our new UT Southwestern Pulmonologist to even get in touch with the surgeon.  Surgery was scheduled for August 8. We went to Cozumel for a few weeks.

As Randy decreased the amount of steroid he was taking, he had more difficulty breathing.  We emailed the doctor at UT Southwestern and were told it was normal to start struggling to breathe when weaning off the prednisone.  We returned to Dallas from Cozumel on July 31.  On August 2 a reading of Randy’s oxygen saturation was at a critical level and he was put into ICU. At first we were told, pneumonia.  Ok, so get rid of the pneumonia and he’ll be ok, we’ll have to reschedule the biopsy.  We were told we should do some testing for the option of lung transplant, but it probably would not be necessary. Randy was in ICU, conscious, not sedated, and his lung capacity did not get better, regardless of treatment.  The unthinkable, the lung transplant, became not only an option, but the only option.  His lung capacity went to below 30%. After a million tests he was approved by the lung transplant team, and he is now a “pre-transplant” patient.

I am stunned. We are adventurous, we like to travel, we are active with our young adult children, we’ve gone on safaris, been diving with Great White Sharks…. and now Randy needs a lung transplant?  Two weeks!  How can your life change so much in two weeks!  I will continue to assimilate, and will blog about this journey….this very, very unexpected journey.

Tam Warner Minton

I am an avid scuba diver, underwater photographer, amateur historian; interested in all people and cultures. For me, the unexpected is usually the norm! My motto? Live life on purpose and with passion and do what you can to make a difference in this world, no matter how small! Contact me at travelswithtam@gmail.com

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Cheryl Hogan

Saturday 21st of March 2015

I am a retired and have been on the lung transplant list for approximately 5 months. Your husband's story is a fascinating journey of determination and strength.

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