Anneke has received the gift of a new heart.

Welcome! I am Anneke's grandmother. Grandpa and I live in Michigan. That is too far in my opinion but we delight in every minute we are together. We are very grateful for technology like this. So, for now, across the miles, this is my hug for Anneke.

How did we get here? from dad Mike.

A lot of you already know this story, but there are some new friends here, so this is the long and short of it.

Anneke was born with hypoplastic left heart syndrome (basically only the left side of her heart). This required a heart transplant when she was born. We waited for four months for that little heart. She has had a relatively uneventful post transplant period from that heart until a couple of years ago. A routine angiography in 2017 showed a 90% stenosis in one of her coronary arteries and the beginning of Cardiac Allograft Vasculopathy. The artery was stented and she returned to her normal life. A little over a year ago she started to notice being short of breath and mild chest pain with activity. A stress test showed ST elevation. She went back for angiography which showed more large vessel disease requiring 3 more stents. This angiography also showed elevated filling pressures in her ventricles, which means her heart muscle is getting stiff, the beginning of heart failure. The year continued and she was able to enjoy skiing with her classmates, and had an internship at a local café and smoothie bar. During the summer, she had a job at dog daycare but this job was more physical and she noticed a lot more shortness of breath, chest pain, and a racing heartbeat with some of the activities. We went to Seattle Childrens Hospital once again for angiography, which showed the area of the stents was good, but a progression of small vessel disease and areas of unrecoverable ischemia.

Prior to this most recent trip to Seattle she decided that she wanted to take some classes at COCC to study to be a phlebotomist. On the first day of school she got nauseated and threw up walking up the hill to her first class. A couple weeks later, once again walking to class she developed chest pain, felt her heart racing and then passed out for a few minutes. Thankfully she woke up shortly thereafter and was feeling better. These events are what precipitated a phone call from a transplant RN at the University of Washington Medical Center. Within 2 hours of getting that call we were on the road to be admitted and worked up to be put back on the transplant list.

So now we wait. Anneke will remain in the hospital while she waits. Rachel needs to go back and forth to Bend so she can finish her Medical Assistant program, (Anneke insists her mom keep going to finish the program) meanwhile I will stay in Seattle to support Anneke. They say we need to expect to stay here for 3-6 months after she gets her new heart.

And so it truly is here from mom Rachel.

We've had a great 19-year-run and now her heart is saying goodbye. She is past feeling scared and is excited to feel “like a human again.” To be able to walk up a short hill without passing out, to hit the slopes again. She has a strength that is unimaginable. She is ready.

I said I could never go through this again but here we are. There is no way out, no alternative path, no miracles. The only option is to go through it and come out with more scars. Some seen, others not.

Please send all your prayers thoughts and support to our baby girl. We will take a few too. Mike is able to stay with her full time (FMLA is still being worked out) and I will be commuting between Bend and Seattle while I finish up my last school term and start practicum.

This will take a determination and tenacity like I’ve never had to endure. And yet it will be done.