4/25/16 update

Diet is changing.  Challenging.  Something new to  learn and adapt to.  Heart failure required a low sodium diet of less than 1500 mgs of sodium per day.  That is very difficult to achieve.  After the transplant we need to keep to a low sodium diet of between 2000 mgs and 3000 mg of sodium.  That's like being let out of prison early!!!  But, now we have to keep to a minimum of 14 servings of protein (in error we said 14 grams earlier in a blog) to help wound healing and muscle growth.  Roughly 100 mgs of protein.  At the same time, we need to keep to a low level of sugar.  Both of these diets are, apparently, partially the result of everyones favorite drug, prednisone.

The chest is still draining too much fluid.  The decision was to made to increase the diuretics to make me "a prune".  The amount of the increase has not been told to us yet.  An ultrasound was done on the heart area today and we think that the results of that (looking for fluid around the heart) will help the docs decide the dose.

Additionally, on Saturday we found a large bruise on the left groin.  Probably a foot long and several inches wide extending from the centerline around to the edge of the back.  Another ultrasound was performed on that area.  No word from the docs yet (likely will hear in the morning) but the technician didn't indicate that she saw anything.  They aren't  really allowed say anything to us about what they see, but there are ways to interpret their reactions to our questions.

There is a 'hole' where the driveline came out of the tummy wall and that needs to heal.  Every day they pack a material in the hole so that it can heal from the inside out.  To avoid an abscess.  It doesn't look like a fun thing to do at home.  Maybe it is a blessing that we need to stay here longer in that it might be healed by the time we leave.  The length of the packing has gone from 6-8 inches at first to less than three inches.  It is not painful, but as Co says, she "was a banker, not a nurse".

Rejection is a big fear with a transplant.  Infection is also a big issue. Here in the hospital, anyone in the room, except me, needs to wear a mask and gloves to protect me.  When we walk out of the room, I need to wear a mask.  Once home, I'll need to wear gloves and a mask to garden.  I'll need to wear a mask in public, malls, stores, church, anywhere there are groups of people.  Visitors at the house will be asked to wear a mask.  Truly, honestly, when I saw someone in a mask in public, I wondered if they were infectious, not that they were trying to not get infected.  So much to learn and to adapt to.

So, there are still unknowns.  We do know that we won't be released until the chest stops draining so much fluid.  The blood clots will keep us here until at least Wednesday if not Thursday.  Not knowing is a killer. 

John