5/18/16 update

On Monday we went to see Dr Smith, the surgeon who transplanted John's new heart. I say we had an appointment to see him, not that we saw him.  We did not see him.  A nurse checked all of the vitals when we first went in, blood pressure, oxygen saturation, etc.  After some time, Sinclair, Dr Smith's Physicians Assistant, came in and checked John's incision and manipulated John's sternum.  All seemed ok.  He inspected the driveline opening and said that it didn't need to packed anymore.  That made Colleen's day.  She has been doing nursing jobs for about 10 months.  She cleaned and protected the LVAD driveline daily and lately has been packing gauze into the driveline opening so that it heals from the inside out. Again daily. She has now hung up her nurses hat.  Sinclair then left and  there was a long wait.  We could hear Dr Smith in the room next door, and we kept waiting.  Finally, after an hour and a half of waiting, Sinclair came back in to tell us that they were running late.  Really?  And that there was another patient for Dr Smith to see before us.  I asked if Dr Smith needed anything more than Sinclair's inspection revealed and he said no.  He gave us permission to leave and we did.

Before we left we did ask him if they recorded the time the heart started beating so we could know the time the transplant was done.  He said no, they don't record that and that they actually start the heart beating while they are still stitching it in.  Who knew?

Today (Wednesday) was a blood draw at 8:30 and a visit with Heidi, Dr. Masri's Physicians  Assistant.  It was a very positive meeting.  John's blood sugar levels have been consistently within range so the four times a day blood glucose testing are now a thing of the past.  That is nice.  There is no longer a need to record John's weight in the evening.  The morning weight is adequate for her needs.  The dose of Torsemide, the diuretic, has been lowered from 40mgs morning and 40mgs afternoon to 40mgs morning and 20mgs afternoon.  That is a small adjustment but welcome.  John's weight is down to 181 pounds (from 196 pounds entering the hospital)  and Heidi feels that John is now 'dry'. 

The blood tests results are fine.  The creatinine is within range for the first time.  That is an indicator of kidney function.  The protein level is finally within range and the protein requirements have been lowered. It is really hard to stuff 14-16 servings of protein into oneself.  That is 98mgs to 112mgs a day.  John has learned to like Greek yogurt and protein bars.  All good things.

There have been small headaches and crampings in the legs and fingers (yes the little finger on either hand) that are attributed to medications, probably Tacrolimus.  Tacrolimus is an anti-rejection drug that is lifelong.

Next week is another biopsy.  If the result comes back like the first four, the prednisone dose will be reduced again.  To 15mgs a day.  Always a good thing, it's a nasty drug.  Side effects include increased appetite (weight gain), crankiness and restless sleep.  Some of you have experienced it. They want to get it as low as possible without negatives.  That lowering will mean that another medication will be stopped.

We rescheduled our eye doctor appointments which we missed while in the hospital.  We spent most of yesterday morning there.  Tomorrow we are going to Children's Hospital for a potluck lunch.  It will be nice to see all of our volunteer and staff friends.  We have not received permission to begin volunteering there again.  Things are getting back to normal, which is very nice.

John and Colleen