Almost One Year

Time is flying by and they tell us 2013 is his year!  That narrows it done to 12 months :p  In the meantime, he has been doing well.  He's walking for exercise, keeping any additional weight off - whether fluid or otherwise.  He keeps the weight between 226-229.  I think the walking more regularly has really helped this - keeps them kidneys perfused and working better.

His INR has been a little wonky this past week or so.  It shot up to 4 a few days ago so had to adjust his coumadin a bit.  Mayo gets concerned about clots in the pump or GI bleeds when they start seeing this happen.  He hasn't had any other symptoms to indicate a problem.  After some adjustment, it's back to a normal range.

Mayo Calling

So Mayo calls Carlos to tell him.....wait for it.....wait for it.....

"You're retaining fluid".

*gasp*  We would have never known this if they hadn't told us.  Geez.  Current weight is 231.  They said his labs were indicating fluid retention.  Carlos is approaching the previous weight where decompensation began the last two times (245).  I've told them, you'll think he's fine and then all of sudden he won't be.  Grumble.  Can't go out of work yet so I need him to not have any misbehavior. 

Otherwise, all is well in LVAD world.  There are trialing a new dressing that will only be changed every 2-3 days and its smaller and neater.  I'm very excited about that. 

Thoratec  is also coming out with new equipment that is smaller and lighter.  We expect to see that sometime in the first part of the new year.  Currently, the equipment is something like an extra 5-7 pounds I think.

Carlos will be having his 1 year vadaversary in February.  Crazy how much he and all of us have gone through.  People ask how Carlos is doing and my response is 'great! '

Fluid Retention Is No Joke

Carlos has been doing well...except for his fluid retention.  His weight contains to creep up and up - and it's not from eating.  Just to give you an idea.....

1/31/12 Admit to all the drama - 235

2/28/12 Discharge from Hospital after LVAD placement - 180.1

3/12/12 Discharge from hospital after GI bleed - 173.5

4/16/12 Discharge from hospital after f/u colonoscopy - 178.4

6/1/12 190.8

7/1/12 200.2

8/1/12 207.4

9/1/12 212.6

Just in case you aren't good at math - that's 32 pounds.  Now, granted, some of that comes from regaining muscle mass and he was dehydrated in the 170's.  But I've seen this before twice.  He goes into the hospital and comes out a week later weighing 30-40 pounds less.  And he wasn't wasting away in bed on a ventilator for either of those two previous big hospitalizations.  He gains that fluid gradually over a long period of time....only not so long this time around.  They aren't concerned about it at the Mayo though, as long as he doesn't have any symptoms.  I figure, once he hits 230-240, he'll become symptomatic (coughing, fatigue, abdominal pain, loss of appetite) and then get admitted.  Problem is, he doesn't want to be admitted for anything less than a transplant.

Six Month Anniversary

I haven't posted in awhile as there hasn't been much in the way of exciting or interesting news.  Carlos has been doing well.  Life has gone about its business around the Jackson household. I can't believe ( knocking on wood) he hasn't been hospitalized in four months!  Today is his six month anniversary appointment.  It's been six months since the LVAD was placed on February 4th.  What a trip it has been. Just a few months ago, we both dreaded living a life with a machine in him. But now, it's just another part of life.

0800. 6 minute walk test.  We will be charged $267 for the pleasure of him walking up and down a hallway as many times as he can in a six minute period.

0820 Waiting for echocardiogram to show us how there's been no improvement in his heart and his ejection fraction remains 10%.

1000 Waiting for lab draw x 3.  Not sure what's up with that but he's scheduled for a lab draw every five minutes x three.  Any bets on what test it would be versus an error in scheduling?

1013 It was an error in how they scheduled..one poke and five tubes :-)   Now waiting for pacemaker check.  Things are moving along briskly for a change!  Despite Carlos' 14 trips to the restroom to pee off the 2 pounds he accumulated since yesterday. 

1035 Waiting to see the LVAD/transplant peeps then out the door hopefully.

1230. And all is good :-)

An X-ray

Neat picture hunh?  You can see the LVAD and the pacemaker.  This is what Carlos' x-ray would look like :)

Watch a Heartmate II implantation

This is amazing stuff....very graphic so watch only if you aren't squeamish :-)

Watch "Heartmate II LVAD Implantation. Arie Blitz, MD" on YouTube

Libby's post

I wish my dad had a heart right now we cant wait. I love my dad and he's funny but, we are hoping that he gets his heart on Father's Day or on the Fourth of July. Carlos my dad he helps me on my volley ball and im happy to have a dad like this. But a lot of kids don't have a funny, playful, and fun dad like this family. Some times before i go to bed, i always hope that my dad will get a heart real soon.I love my daddy the way he is because he's the best dad u could every had.

Libby