Update 8.19.15

We did have a bit of a scare last Friday at bedtime.  The LVAD needs to come off of the battery pack system and onto what is called the "Mobile Power Unit".  It is easy to do, but there is one important thing to do.  The cables are removed from the batteries and reconnected to the Mobile Power Unit, a 120v system, but the cables must be white to white and black to black.  John hooked them up backwards and set off the alarm.  Loud, insistent, constant and panic causing.  We didn't see the solution immediately so called the LVAD coordinator on call at UWMC.  Easy fix and quick, but now we do a double check.  No damage done, although frightening when we saw that we had 2 minutes, 17 seconds left on the countdown.

Tuesday afternoon, we got a phone call to advise us of an LVAD support group meeting on Wednesday.  We knew that the UWMC had this support group and we had heard that only meet every three months and in different locations.  This one was at a Fire Station in Marysville.  Despite the short notice and long distance, we went.  We like and feel that we benefit from support groups.

There were two couples and single man there as well as Amy, one of the UWMC VAD coordinators.  One man was waiting for a transplant like us.  The other two have LVADs as a 'bridge to destination', which means its purpose is strictly to make the quality of life better until death.  Both men are past the cutoff age for transplant.  They seemed upbeat, one man plays a lot of golf. 

This morning John showed a weight gain of 2.5 pounds.  We were told to call in if a gain of two to three pounds happened, so we called in.  We were in fear of being readmitted for intravenous diuretics to get rid of this excess water weight.  John does have swollen feet and lower legs and water in the left lung.  Bottom line; the docs decided to let us watch weight for another day and then call in with a report tomorrow.

Tomorrow will be a big day for that reason and another.  We will have an INR test in the morning.  The nice thing is that we can have the blood draw in Kirkland, at Evergreen Hospital.  It is a 30 minute trip, rather than the one hour each way to the UW.  We go the UW often, no set schedule, no set day.  The LVAD we got, the Heartmate III, is in clinical trials, so in addition to doctor visits, we are called in on different days for that.  The UW does what it can to schedule multiple visits on the same day, but it is often not possible.  When we were discharged, we were given a list of 20 appointments we have.  We are scheduled at their availability, not ours.  This is now our reality.

Jennifer and Mick have been coming by to 'John sit' and give Colleen a little time to run errands and catch her breath.  She is doing the work of both.  We had the bedroom blackout blind break this morning and Mick rushed over, took it down and he and John took it to the repair shop.  Then, back home and Mick reinstalled it.  Big thanks to both Jennifer and Mick.

Colleen and John