The Call part two

9:30. Beth arrives.  The inappropriateness reaches new levels.

10:15. My mom arrives.  We keep cracking jokes at Carlos' expense.  But it keeps the mood light.

10:35. The nurse comes to take Carlos to pre-op.  We follow like groupies then head to the waiting room to set up camp.  We'll get to see him once more before he goes back.

12:00. The witching hour.  We go back to sit at his bedside until it's time.  Carlos is a little woozy from his visit with Dr Feelgood.  He now has a Swan Ganz catheter in his neck and an arterial line.  He's in good spirits so we continue with the inappropriate jokes.  

12:40. They took him back and now the wait begins.  We have heard anything from 6 to 12 hours.

The Call

3:07pm. Carlos comes walking into the bedroom crying and hands me his cell phone.  The girls follow behind asking what's going on.  Two of the nurse transplant coordinators are on the phone and tell me they have a heart for Carlos.  I accuse them of playing a joke.  This really felt out of the blue for both of us.  We really had resigned ourselves to a two year wait and it's not been a year and a half yet. 

4:20. Arrive at Mayo to check in.

4:40  Someone finally checks him in.

4:55. We get to the room.  And stuff starts getting done.  Chest X-ray, bloodwork, etc. 

7:55 The chaplain comes in to chat.  That's disconcerting when you are waiting for open heart surgery.  We pray holding hands.  Then we burned some incense and chanted.  Haha.  We did pray though.

8:00 Kim's mother , who passed away 6-7 months ago, sent a message that all would be well and don't take the fentanyl (inside joke involving hallucinations and fentanyl).

8:45   I put the nurse through the third degree regarding surgery length of time, did the surgeons sleep today, etc.

8:50. Heidi arrives with supplies (Powerade, Xanax -lol, and food).  We are laughing our asses off. 

Latest info - he heads to preop at 1030 and surgery at 1130.  More to come....

INR Drama

Remember when Carlos had INR drama?  It was too high and he had a GI bleed.  Now he decided to do the opposite...his INR is too low.  It's been dropping the last few weeks despite increases in his coumadin.  So tomorrow we had to Mayo.  If it's increasing then they will continue to monitor.  If it's not, hello hospital admit for heparin.

Keep your fingers crossed it looks better tomorrow.  Liberty's birthday is on Tuesday and we are celebrating tomorrow night.  Last year, Carlos was in the hospital for her birthday.  Here's hoping no admit!

One Year Vadiversay

One year ago today, Carlos had open heart surgery and LVAD implant.  When I look back at the past year, I am amazed at where we are now.  It was a rough couple months at first.  In the Facebook LVAD groups, we've seen LVADers who have passed away over the past year.  This is always a sad thing to see but we take it as a reminder to live life and don't sweat the small stuff.  We expect that this will be Carlos' year for transplant!

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.