Update on Rand-O the Double Lung Transplant Patient!

A Lung Transplant is not a walk in the park. Randy has been home for a little over two weeks.  He is doing well, getting stronger, and trying to “get with the program” of his new life.  A life without Velveeta seems to really be challenging for him.  We had friends over for dinner and cards last night (such a normal thing to do!!!) and they were quite surprised about the Velveeta issue.  “That is the worst food for you ever!  Do you know how many preservatives there are?” Greg told him.  Randy informed him that Velveeta was the absolute best food on earth, that when he was younger he used to cut off big slabs of it and eat it with mayo.  EWWW.  I don’t like Velveeta at all, and I’m not huge on mayo, so that combination kind of made me a bit ill.  Of course, Mr Double Lung Transplant should NOT be eating Velveeta.  At all.

Food seems to be the major stumbling block.  No salt, sugar, velveeta, red meat once a week…these requirements are incomprehensible to Randy.  He says he will do better.  I think he is feeling the after effects of the trauma he has suffered, both physically and emotionally.  “Annually, about five million patients stay in an intensive care unit in the United States. Studies show that up to 35 percent may have symptoms of PTSD for as long as two years after that experience , particularly if they had aprolonged stay due to a critical illness  with severe infection or respiratory failure . Those persistent symptoms  include intrusive thoughts, avoidant behaviors, mood swings, emotional numbness and reckless behavior.” (http://well.blogs.nytimes.com/2013/07/22/nightmares-after-the-i-c-u/?_r=0).  Research shows that being intubated (put on a venitlator) is exptrememly traumatic, and Randy was on one for nearly 3 weeks.  It is hard to imagine going through what he did.

In the article, Jan Hoffman also brings up sedation.  Although sedation is absolutely necessary in the ICU, it also gives the patient seriously intense hallucinations which can return, or flashback, for years afterward.  The worst offenders are apparently benzodiazepines, anti anxiety meds like Valium and Ativan.  Randy was on these medications without stop for over a month.  The medication he was constantly given was needed, don’t get me wrong.  Randy fought the ventilator and was very anxious, even when unconscious.  He does have amnesia, he does not even remember his last “crash”, or respiratory failure, has no memories of ECMO or the ventilator, or even the surgery.  I think Randy’s expectations and experiences were so different from the rest of us that we are having, perhaps, some difficulty in communicating and understanding one another.  The experience for him had to be harrowing and completely overwhelming.  It will take time for the side effects of these medicines to wear off.  We just have to give it time.

For the most part, Randy is doing great. He does Pulmonary Therapy 3 times per week, has xrays, blood tests, bronchoscopies, CT scans, and next week, an infusion of medication which is an anti viral.  There is a virus (sorry I cannot remember the name of it) that 85% of people have had exposure to, and therefore they have the antibodies for it.  However, Randy has never been exposed to the virus.  His donor had been exposed, so the infusions are to try and rid the donor lungs of that virus (as far as I can understand).  So, UT Southwestern and the Transplant Team are still a huge part of our lives.  But he gets better and stronger every day, and we are grateful to be here, in our own house, at home, together.  He is here.  That is all that really matters.