Lung Transplant Approval, an Unexpected Journey

How did we get here?  I am still so stunned that I am not quite sure.  7 months ago my husband and I were in the Revilligadoes Islands south of the Baja, diving with hammerheads and Manta rays….6 weeks ago Randy was still walking 3 miles a day…2 weeks ago today my son and I rushed him to the hospital because he was having great difficulty breathing.  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.

So how did we get here? Well, 3 years ago Randy was diagnosed with a strange lung disease we had never heard of: Sarcoidosis.  It is not caused by smoking.  It is triggered by something…but they don’t know what.  It may or may not be an auto-immune disease.  We were told that in 90% of cases sarcoidosis clears up, probably nothing to worry overmuch about.  Treatment?  Nah.  Of course, I did my research and discovered that this is the disease Bernie Mac had and died of…but only 10% of people have any serious issues.  I was concerned, but the pulmonologist was pretty blase’ about the whole thing.  Fast forward a year and a half.  Randy is worsening.  Dr 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%. Well, guess we should start steroids now.  I become so incensed that it takes everything in me not to scream at the doctor.  So, back to my research, and a decision to seek out an EXPERT opinion.  I called USC, UT Southwestern, National Jewish Hospital, Cleveland Clinic….National Jewish can see him first, so we went there in March, right after Wesley (our son) graduated from college.  Dr. Nabeel Hamzeh conducted many tests, and told us he felt that there was something other than sarcoidosis going on.  Yes, he might have sarcoid too, but something else was going on.  He let us know that the reports from the first doctor, from 3 years ago, showed honeycombing of the lungs (a sign of end stage lung disease.)  Hamzeh suggests a lung biopsy at UT Southwestern, one of the top Interstitial Lung Disease Clinics in the country.

I called UT every day, asking about cancellations.  We couldn’t get in until MAY.  All testing had to done again.  In April my mother had started to really go downhill….she had been declining of emphysema and COPD for quite some time, but by March/April it was getting very serious.  My mother passed away on June 22.  Randy had to wean himself off of prednisone before the biopsy, and it took 2 weeks for our doctor to even get in touch with the surgeon.  Surgery is scheduled for August 8.  Randy and I head to Cozumel, Mexico where we usually spend every July.  We needed some rest.

As Randy started decreasing the amount of steroid he was taking, he had more difficulty breathing.  By the time he was down to 10mg, we headed back to Dallas to prepare for the biopsy.  We did email the doctor at UT, and were told it was normal to start struggling when weaning off the meds.  That seemed totally reasonable.  We returned to Dallas on July 31.  On August 3 my son, Wes, and I took a reading of Randy’s oxygen saturation, and it was at a critical level.  I could not believe it.  We called an ambulance.  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.  He is transferred from Medical City Dallas to UT Southwestern so the Lung Specialists can take over his care.  He is in ICU, conscious, not sedated, but in ICU because his lung capacity was not coming back, no matter what they did.  We were told at the end of last week we should probably do some testing for the option of lung transplant, but it probably would not be necessary.  They tried a cortisone “blast” over the weekend.  No result. The unthinkable, the lung transplant, became not only an option, but about the only option.  Today he was approved by the lung transplant team, and we are just waiting for insurance in order for him to get on the list.  He is a high priority patient.

So, I am stunned.  Randy has always been Mr Healthy.  We are fairly adventurous, we like to travel, we are active with our young adult children, we’ve done safaris, been diving with Great White Sharks, handgliding, skiing, diving, snorkled with whale sharks…… and now Randy needs a lung transplant.  There are many, many people driving and flying in this weekend to see him.  We are all in disbelief.  2 weeks!  How your life can change in two weeks!  I will continue to assimilate, and will blog about this journey….this very, very unexpected journey.