It's Just a Piece of Paper

Carlos and I had a moment yesterday.  It involved Kleenex :-).  I was telling Carlos that we would go to the transplant support group on Wednesday and maybe he could talk to some LVADers who were having a hard time.  Unbeknownst to me, he was asked to come talk to an older couple last Tuesday, where the husband was being counseled on an LVAD for destination therapy.  So Carlos talked to the couple about life with an LVAD and all it had done for him.  Carlos felt that this was what God was waiting for him to do before he could receive his gift.  It was an emotional moment for us. 

Last night, my mother and I chatted over a glass of wine or three.  Prior to transplant, I always rationalized transplantation.  I felt like a person was going to die, whether we took that heart or not.  People in the LVAD groups would talk about 'the gift'  and it sounded so cliche and trite.  That was me rationalizing the whole process again.  It's a medical procedure, not something spiritual and mystical!  But then it happens to you, and your perspective changes.

Before getting married, I always felt like a marriage certificate was just a piece of paper.  We didn't need a piece of paper to tell us we were committed.  But then you take the leap and get married.  And it is different.  I felt a stronger connection to Carlos.  Being committed in the eyes of the law added a new layer of intimacy.  It was no longer as easy to walk away if things didn't work out.  Getting the gift of a new heart changed my perspective.

Even though a person can choose to be an organ donor and indicate their wishes to family and friends, this doesn't mean a family has to follow through.  By law, the family can deny organ donation.  And many families do because of grief, religious beliefs, etc.  I really began to think about where this heart had come from and the family members of the person who died when the heart was removed.  How can you ever thank someone for making that decision in the midst of their despair?    I am now amazed and astounded at the generosity it takes to extend this lifesaving gift.  It was very emotional last night, and even now as I type, to contemplate. 

I want to thank the family who agreed to save our family while theirs may have been falling apart.  Organ donation is much more than a medical procedure and triumph.

It Was a Good Day in Transplant Land

It was a good day.  Things are looking as they should.  When I walked in he was much more alert than yesterday.  I figured since he was a captive audience with no ability to grab the remote, I'd chatter away at him.  He responded with nods to questions and was just more engaged than your average unconscious patient :-)

He saw the PT and OT ladies.  They did some range of motion and he showed off.  They were asking if he had a cane or walker at home.  I looked at them like they were crazy.  I told them he had been going to the gym up until the day prior to The Call.  They were surprised.  I told them, we don't play around.  We've got a volleyball dynasty to grow!  We discussed any potential issues once he goes home...like stairs, etc.  Fortunately our bedroom is on the first floor so he won't have any issues there.

They did start the thymoglobulin but at a much slower rate.  He tolerated that fine.  The plan was too extubate if he passed RT's tests once the med was done.  It took a little longer to make it happen and in fact, I thought the ICU intensivist was going to not order it.  But when I got back into the room he was off the vent with just a little oxygen nasal cannula, smiling at me :-).  Oh happy days.  I can always handle just about anything as long as he can talk to me.  Him being heavily sedated and on a vent are just not things I tolerate well.  Anyway, I didn't have to lay the smack down so all is well...lol. 

So kidneys are improving with creatinine at 1.8  and good output.  Minimal drainage from the chest tubes.  They say those stay in an average of 3-5 days.  Still no need for the pacing wires and the dobutamine is being weaned down.  The epinephrine was shut off much earlier today and he has kept his blood pressure up.  He's been getting his anti-rejection and anti-infection meds by IV but tomorrow they will start transitioning to oral medication.  He will start to get up tomorrow and move around a bit as well.

Drama Mama

Carlos had a bit of drama.  They started him on a medication called thymoglobulin that he really didn't like.  I wrote this whole long post and this stupid program didn't save it.  So here's the short version.

He had some unpleasant side effects that are common so things were feeling a little intense.  Blood pressure dropped, there was projectile vomiting with something that looked like blood at first glance, etc.  It was exciting to say the least.  He was stable again when I left.  He was nauseous but communicating more, not liking the lying flat on his bed, and the tube in his throat.  They have him back on minimal vemt settings so hoping maybe he will be ready to be extubated this evening as originally planned.

Then I'm going home to sleep.  Its been a lot of hours since I last slept.  Its like working a busy weekend!

Deja Vu

Kim and I are sitting here chilling with Carlos.  He got into his ICU room about  1050 this morning but we didn't get back here until about 1215, once they had him tucked in.

One of the transplant doctors came and talked to us after surgery.  They had a tough time getting in and getting the old heart and LVAD out.  There was a lot of scar tissue which, considering how he keloids on external scars, didn't surprise me.  Because of the that, he had quite a bit of bleeding.  He received a bunch of blood products.  See picture below :-)   They got the new heart in and it immediately started beating.  In fact, its right where they want it and he's not requiring any pacing.  They removed his BiV pacemaker as well.

He's already breathing spontaneously on the lowest vent settings.  They want him to wake up a little more before extubating but sounds like it will be by tonight if not sooner.  He has lots of other stuff hooked up as you can see in the picture...chest tubes, various lines, and the event.  His kidneys got a little ticked off so creatinine went up to 1.9 from 1.6, but output is great and they aren't concerned.

I love watching his heart rate.  Not a single PVC or other arrhythmia.....just very steady beat.  Unfortunately, I did not get a picture of his old heart.  They wouldn't let me have it in a jar either :p. The nurse said it was pretty amazing to look at the difference between the two hearts though.  She said his old heart was big and floppy while the new was tight and smaller.

We don't know anything about the donor at this point.  I think there will a lot of time later to think about that but I'm so incredibly thankful that despite someone else's suffering we can have this gift.

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!