I haven't posted in a long time cause there really wasn't anything to blog about. Carlos had been doing really well aside from some hiccups here and there, like diabetes (common 'side effect' of transplant). The kids have been getting their yearly cardiac screenings without incident. Life goes on and you start to forget about how bad things were. You start to become complacent.
Carlos had returned to work back in October, working 40 hours a week in a physically demanding job. Disability had determined he was capable and no longer met criteria for disability. Fair enough. Unfortunately, not always great at self care and speaking up when not feeling well, he became very tired. We all assumed it was just adjusting to working again and the physicalness of the job (hello 80k steps on the fitbit!). I figured he would get in better shape and start losing some weight (he did initially). He was enjoying the work as well. But the tiredness didn't go away. I thought, well he's got diabetes and is overweight so it is what it is. Then he was so tired, that even on the weekends with no work he wasn't moving much from the recliner. I even thought recently, is this working thing really worth it but that's the money to pay for volleyball. And he would be off all summer (he works at ASU so only works during the regular school year).
Wednesday morning, Carlos texted me and said he was going home after only working about 90 minutes because he wasn't feeling well. He said he was tired, experiencing cold sweats, dizzy, and body aches. I thought damn, sounds like flu. Told him to go home, check temp, and let me know. Surprisingly he had no temp. I was a little surprised cause he and the kids are dramatic usually. They get a cold and run high temps! He rested and seemed to be doing ok as long as he just stayed in bed. The next day, he stayed home and rested but was having a but of shortness of breath with exertion, still dizzy when up, and tired but no fever. I told him to call the transplant nurse. Unbeknownst to me, he has been having trouble earlier in the week with the walk from the parking lot to the dining hall, having to stop and rest. The nurse talked to the doc and they wanted him to come in the next day (Friday) for labs and testing. I started to suspect rejection as I started googling (lol). And Mayo must have been thinking the same thing.
Yesterday we spent the day here, starting with labs then ECG. No appt with the doc was scheduled so I told him we will call the nurse before we leave because his heart rate wad in the 130s with walking. Fortunately, the ECG tech called for us as he had an abnormal heat rhythm. They wanted us in Dr Scott's office next. We discovered his BP was low as well. Meanwhile, I'm using the Mayo app and looking at his labs..... his creatinine (kidney function) was 2.4! New personal high for him. Woot. His liver enzymes were high too. I knew something was going on and the chance of a weekend getaway at Mayo wad looking very likely. Dr Scott wanted him to have the echo (which was scheduled for today originally) and a heart biopsy (one way of checking for rejection). So yesterday afternoon, he had that done. When they took him to the cath lab they said it will be about an hour. When almost 2 hours had passed, I knew things weren't going to be good. Dr Hardaway came to talk to me. It's never good when they take you to a private consultation room.
Basically, Carlos is rejecting the heart. He ended up with a heart cath, an intra-aortic balloon pump was placed to help improve heart function, as well as a catheter in his neck (you can refer back to old blog posts to learn more about these things if you so desire), and a catheter in his groin. As a result his kidneys and liver are angry. They anticipate those organs will be ok once they get the rejection under control and get his heart working better. So we are in the ICU, also fondly known as the batcave. He's on lots of meds and monitors. He will start plasmaphoresis this afternoon to filter out 'bad' antibodies in his blood and add 'good' ones. We learned his rejection is grade 3. The worst is 4. 😕 He has a 50% chance of pulling out of this and then we will have to see if the damage to his heart is permanent. His ejection fraction was previously 55-60%, normal being 45-75%, and is now 38%. His old heart was 10% when he was implanted with a LVAD. However, the sudden change has caused him to be in cardiogenic shock.
He's in good spirits today. We just have to take it day by day and hope for the best. We will keep things as normal as possible for the kids.... They will do what they are supposed to do - keep getting good grades, go to practice, etc. We do not want to think about what happens if his heart doesn't recover. I cannot cope with that right now.
We appreciate all the love and support we have gotten so quickly. I will update here regularly and share on Facebook. Those that wish to help in some way, Ramona has started a meal train for us, for the next couple weeks, which is hugely helpful. Not having to worry about keeping the kids fed is a big relief. The link is on my Facebook wall. Once we see how things are going, we may extend the dates. I think Carlos will be here at Mayo for a couple weeks at least. Carlos does have his cell phone and has looked at all the wonderful comments on my facebook post. He very much appreciates it! That's it for right now!
