UNOS

May 31 – A good day of news for R.  After tests and the liver biopsy, everything has come back ‘negative’.  In other words, no liver cancer or cirrhosis and no other markers that would prevent her from being placed on the heart transplant candidate list.  One of the transplant staff met with us this evening and spent about an hour discussing risks, procedures, way forward, decisions to be made, etc.  All good stuff.  But how huge is this?  Likely, R will go home “next week”, as the doctors say, on her milrinone drip and diuretic regimen.  And then wait for a donor.  Again, this is all news that we find comfort in but the future actions taken are all dependent on other external (and possibly tragic) events and affairs – which the social workers have talked to us about and made sure we are all ok with how this will work.  (By the way, the United Network for Organ Sharing – UNOS http://www.unos.org/ – is the party responsible for tracking and notifying transplant organizations.)  Anyway, R is calm tonight and we are glad to have made it through a productive day.  So much interest is shown us by the staff (and thanks to the visitors who drove all the way up in very heavy DC traffic today to see us) – we are very appreciative to them and their calm professionalism.  R will sign the papers tomorrow morning authorizing WHC and UNOS to begin treating her as an official transplant candidate.  Bottom line – we will get a call any time day or night and we will need to be to the hospital in hopefully 2 hours to be ready for the new heart.  We have been cautioned that even if we do get the call and make it to WHC, the new heart might be judged by the doctors on-site to be unsuitable or unusable – a call doesn’t mean 100% that the transplant will take place.  Anyway, this will be how we live for days, weeks, months, maybe even years.  It isn’t as bad as it sounds – we’ve had good discussions with the social workers and transplant staff on how to live and cope – but it will be a commitment.  We both are ready.  

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