From Everest to Ben Nevis

"What is she on about it?" you may ask.  Well if you consider his actual transplant ordeal as Everest and the graft disfunction and neuroleptic malignancy syndrome and other issues as K2 and the like, then Wednesday's news may be compared to Ben Nevis (tallest mountain of the British Isles - for non Brits).  Last Friday (not Thursday) we learnt that his left vocal cord was paralyzed.  He had been referred to ENT to put a camera down his throat as he still was not eating and barely able to talk over the Passy-Muir valve which was meant to help him speak with the trach in place.  This news was naturally somewhat upsetting to Iain.  Nevertheless, he took it in his stride.

I should mention for the last few weeks various doctors and nurses have brought in treats hoping that they would have the magic touch in tempting him to eat. As the days have progressed though his lack of appetite has been more concerning and yesterday (not Thursday) he had a swallow study with barium flavoured food and liquid.  This indicated that, in fact food, was slipping into his trachea.  This is, of course, very dangerous particulary for a lung transplant patient.  You do not want foreign bodies in the lungs.  So now he is not allowed to eat or drink anything including water and everything must go through the NG tube down his nose and into his stomach.  This is not sustainable long term so today the final decision (yes Thursday) was made that he must have surgery to insert a gastric tube.  I have to reiterate how incredibly well he has taken this latest challenge.  Perhaps in someway he is relieved at everyone not nagging him to eat and he is totally and utterly vindicated. However, given how much he did enjoy food, even when his appetite diminished with the heart failure worsening, I am a bit sad as food and drink are so much part of our culture.  We hope that with therapy and time the damage will be reversible.

Comments

  • SherriCowhig

    What an amazingly smart person you are Iain, knowing, somehow, that eating would be harmful. My prayers are for the the paralysis to be temporary and for you to be able to, once again, take great pleasure in talking and eating. You are teaching us all about courage and the power of hope, and I am truly grateful. You are not alone. There is hope and there are miracles.

  • Young Schwemm family

    Iain, we hope you continue to feel better and better and that these procedures help you get stronger. Now maybe you will pack on some pounds. It's spring break week and David is brushing up on his video game playing skills. Thinking about you and hope to see you soon!

  • susan muir

    Kudos to you, Iain, for taking all this in your stride. We're thinking about you and the rest of the family too.

  • lisapendergast

    Hi Iain, Hoping that this latest development is temporary. Looking forward to hearing about a plan for you to get out of there soon. Miss you lots...

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