Thursday, May 30, 2013

I'm Tired and Can't Think of a Post Title

Carlos had another great day.  More walking.  A little bit of very unmanly crying when seeing Stacy, the transplant coordinator we have always kinda favored.  A couple units of blood due to a drop in his hemoglobin (7.0, was previously steady at 7.2).  That's probably from all the blood they draw!

His creatinine is an amazing 0.7!  Haven't seen that in years!  I almost wonder if it was a lab error because it's a dramatic drop from 1.2 yesterday.  But he is still needing a little lasix to give his kidneys a boost to pee :)

He has now started on all the transplant meds since they started Valcyte today.  The meds are valcyte, diflucan, bactrim, cellcept, prograf, and prednisone.  He pretty much knows the names and what they are for.  Now he will start learning his doses, etc.  There will be a good bit of education over the next few days.

They are estimating discharge for mid next week.  We will hold out for early next week but not too stubborn about it.  We want to be safe of course.  But, me being a nurse, I worry about hospital infections.

He will have an echo tomorrow and I am excited to hear what his new ejection fraction is.  He'll have his first heart biopsy on Monday.  He will get that done every week for the first four weeks then every other week for awhile.

He starts inpatient cardiac rehab tomorrow :)

Someone from endocrinology came by but they are holding off on teaching him how to check his own blood sugars.  He has had very little need for insulin.  They are cutting the dose of prednisone down on Saturday so may not need any at all.  They said they will wait until early next week to teach if it's necessary.

We had visits from Kim and from an LVADer that we had previously only talked to online.  Pat is an amazing woman with an unbelievable story!  We really enjoyed meeting her and chatting.  Daja and Libby hung out at Jenny's house with her ten year old daughter.  They enjoyed themselves :)

I am just so tired by the end of the day.  I'm not sure but think it's a combination of my RA/fibro and the stress of everything going on.  The meals have been helping hugely - as many of you know, I don't like to cook and it's just one less thing to deal with.  Thanks everyone for your help!

Wednesday, May 29, 2013


Carlos got moved to 4w - woot!

He had a good day for the most part.  He was up pretty early so was sleepy by this afternoon.  He walked laps about 0530!  He had PT and is getting up and down from the chair much smoother and easier.  They shut off the dobutamine.  They use it to keep the new heart pumping as strong as possible then wean off it.  It also keeps the blood pressure up, which sometimes runs low secondary to the volume depletion.  His hemoglobin is chilling at about 7.2 (normal is 13-17).  Unfortunately, when he walked a second time, he experienced orthostatic hypotension, and wasn't feeling well.  They opted to give him some albumin and left the dobutamine off.  That seemed to help a bit.

He started prograf today.  They pulled the remaining chest tubes.  He has the PICC line and still has the pacing wires in but those haven't been used.  That's it!

We saw the nutritition lady to review dietary precautions and restrictions for transplant patients.  She also reviewed the diabetic diet which he will need to follow for awhile.  He did get a dose of insulin today, which I think was the first time since they stopped the insulin drip.  His sugar was 149.

His creatinine is 1.2 - wow!  Haven't seen that number in years!  He's still hanging onto fluid.  The arm with the clot is so swollen :p

Heading to bed - I'm beat!

Tuesday, May 28, 2013


We are stuck in the bar cave another day.  His kidney function isn't fantastic yet despite the creatinine dropping to 1.3.  He hasn't seen a normal creatinine level in a long, long time.  They gave him some IV lasix as he has some noticeable swelling, and not just in the arm with the blood clot.  His weight has gone up despite the fact that he continues to have decreased appetite.  The lasix worked well and he started producing a lot more :-)  

The appetite is slowly increasing.  He's working hard to get the protein in, which helps with healing.  He walked four laps this morning and is ambulating to the restroom without assistance, unless you count someone pushing the IV pole and carrying the chest tube drainage collector thing. 

Blood sugars remain in great control.  He's getting a third dose of the thymoglobulin.  They want to continue to hold off on the prograf  until his kidneys perk up a little more.

They took out the arterial line so now he only has a PICC line and the chest tubes.  He's doing very well!

Monday, May 27, 2013

Can We Go Home Yet?

Carlos is doing great!  Yesterday he got up to the chair a couple times.  He was moved to a clear liquid diet.  They removed the Swan-Ganz catheter in his neck and replaced it with a PICC line. 

Today has been a little more exciting in terms of progress.  He walked three laps around the ICU pod.  I posted a picture on Facebook of that.  Libby video'd  the whole event with her Nintendo 3DS.  He's on solid food now although his appetite is still poor.  I reminded him about the need for protein for healing and strength.  They took out two of the four chest tubes.  I took Libby out for that as it can be pretty painful.  They removed the ladder catheter so now he's on his own to pee.  I'm sure he'll pee everywhere now :-)   He's off the insulin drip and has sliding scale insulin ordered if he needs it but his sugars have been good so far.  The prednisone can cause elevated blood sugars since it is a steroid.  Steroids are used to suppress the immune system so it doesn't attack the new heart.  He will stay on prednisone for about 9 months.  He's still on do but amine and some IV antibiotics.  They want to give him one more dose of thymoglobulin today.  They are considering more blood products as well.  Tomorrow, he will move to 4w. He had a small blood clot in his arm but it is superficial and they don't seem too concerned.

I'm disappointed to be missing the Mercury game today.  We had bought a Living Social deal to get box seats and photos on the court with the team afterwards.  I gave my ticket to Joy so Kim was talking Daja and Joy.  But Carlos, Libby, and I are gonna watch it here from his room :-)

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.

Saturday, May 25, 2013

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 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 

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.

Friday, May 24, 2013

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.

Thursday, May 23, 2013

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....