What's going on with NOAH?

 What happened to Noah?  How did he end up in the hospital?  Weren’t you all just in Hawaii? I’m sure many of you have questions. In order to answer them all  I’m going to go back to give any new readers some helpful cliff notes. 

Almost ten years ago we found out Noah had restrictive Cardiomyopathy and we were told he would need a heart transplant. His heart wall was thickening and stiffening and his pressures were mildly elevated.  Noah spent two years waiting on the heart transplant list.  He was monitored regularly with the transplant team. After two years his pressures came down and he was moved to a status seven which is a inactive hold and he remained there for almost another two years.  We then, with the advice from the team decided to remove him from the list.  Noah has remained stable up to this point.  This past fall semester Noah began to feel a change in his symptoms.  He was getting out of breathe walking to classes, more chest pain, fast heart rate, and over all more fatigue.  The team decided to give him a holter monitor(this is a heart monitor used to check the electrical activity of the heart). We had a Telehealth apt. in November.  They decided based on Noah’s new symptoms, and a couple things picked up on the holter that they would do a heart Cath in December.  The heart Cath revealed that Noahs pressures were elevated but even more concerning was the elevated BNP lab.  BNP is a blood test that measures levels of a protein that is made by your heart and blood vessels.  When the levels are higher than normal this indicates damage to the heart and heart failure.  The team decided to put Noah on a diuretic to help remove fluid that may be building up around the heart.  This would help off load it and help the heart not have to work so hard.  We were told not to postpone our trip but to go and enjoy and repeat labs when we got back.  During our Hawaii trip it was clear to me that Noah was more tired than usual. I knew in my gut this felt different and that we were headed on the transplant list. We returned home on a Sunday, Noah had labs taken on Tuesday, and Wednesday UCLA called and said we want you to come in and see the team on Thursday.  On Thursday morning they did an ultrasound of the heart and it was concerning.  Noahs heart was now having problems dilating.  The heart’s ability to pump blood is lessened. Because of this, his elevated pressures, and his high BNP they decided to admit Noah and also do all the work up to get him back on the heart transplant list.  They first started Noah on a strong heart medication to treat heart failure.  They did not see any significant response so they weaned him off and tried another medication plan.  The goal was to get Noah stable enough to wait outside of the hospital.  He will be monitored closely.  He sees the team again next week.  Our hope and prayer is that the Lord would grant more time and Noah could avoid transplant again however it is very likely given Noah’s current symptoms that he could end up in the hospital waiting for a heart.  

I will share in the next blog post how we are all processing this information.  It has been a lot take in as you all can imagine.  One thing that is hard for people to understand is that when you see Noah he looks fine, he doesn't look like someone you would think needed a new heart.  Trust me its hard for us. his parents to understand as well.

We covet your prayers and ask that you would pray with us for God to protect Noah’s heart and move mightily through his story.