Ari’s new heart began beating in his chest spontaneously at 11:32 p.m. on Friday, March 3.
When we were sitting around the room Friday afternoon waiting on the cardiac floor at Boston Children’s Hospital, I asked Ari what song he wanted to hear. Immediate response: Scarlet Begonias into Fire on the Mountain
Until I typed this, I forgot this is the second appearance of Scarlet Begonias on Ari’s blog. I mentioned it in Circumcise Your Heart when Ari was 9 months old.
In that post I said the following:
It’s been a challenging time for the family, including that while they were at the hospital they discovered mold damage in their house, requiring them to rip out floors, walls, ceiling, and electrical in a good part of their living space.
If you’d like to donate to a GoFundMe we’ve set up for the family, go here: https://www.gofundme.com/AriDangersNewHeart
Q. What have you learned from all this?
Heavens to Murgatroyd! No fair. There’s no way to answer that question with a joke without seeming either evasive or out of touch with the gravity of the situation.
And how could I possibly answer without sounding sanctimonious?
Here’s what I said, plus or minus:
Good friends of ours just lost their seven-year-old son to similar heart disease after a long and painful struggle. After a while, when they were ready, they posted a message online to friends and family. In that message, they said that their son’s life made their lives big and wide.
I might not have understood that before, but I understand it now.
Almost 5 years later, here I am listening to Scarlet / Fire, writing an FAQ post, and thinking the exact same thing: Ari makes our lives big and wide. And a lot of other people’s, too.
Once in a while you get shown the light in the strangest of places if you look at it right.
Meanwhile, we’ve had a lot of questions we thought it might be helpful to answer here on the blog.
What’s the current situation? How’s Ari?
As of now, he’s stable in the cardiac intensive care unit. He is deeply sedated and has a breathing tube in. He looks like he’s resting comfortably. Beyond that, he’s still in the weeds and has a lot of mostly anticipated challenges to overcome so there’s not much of a medical update.
What comes next short-term?
Ari has some tightness in his pulmonary vasculature. We’re treating that to calm it down, and it calms down fairly well with extraordinary medicine. But we need it to calm down with just everyday medicine. So we wait for that.
Once it’s calm enough, we pull the breathing tube and see how he does. Hopefully the tube stays out and he can breathe on his own without too much support.
He gets a ton of medicines right now, part cardiac, part to shut off his immune system.
Next week he gets a cardiac cath to check his pressures, and to do a biopsy. The biopsy is to see to what extent Ari is rejecting his new heart. We expect some level of rejection at this point as most kids like Ari have rejection at first. The hope is that it’s not too strong.
If it’s not too strong, and he’s gaining strength, we go to the floor to recover.
How long until Ari comes home?
Before this process, we were told to expect 1-3 months post-transplant. Right now it’s looking like…1-3 months. Shorter than that is possible but unlikely. Longer than that would mean his struggles are extraordinary. Expectations don’t really matter though. We’re day to day.
Is his heart fixed? Is he better now?
No, not really. Getting a new heart, we were told, is like trading one disease for another. He’ll be on a lifetime of meds, and there are a lot of health challenges and risks.
When he was listed, Ari was given about a 70% chance of surviving the first year. This is lower than other children with fewer risk factors. Most of the extra question marks are due to surviving the immediate transplant period, pulmonary vascular resistance, and rejection.
What are the risk factors?
Risk factors, in general, with heart transplant include:
1. Rejection: All transplanted patients risk rejection. Ari is at higher risk of rejection than most. Some rejection we expect. Severe rejection is life threatening.
2. Infection: Think of your immune system as an armed military unit that’s always busy fighting. With most transplant patients they said they take away the guns. With Ari, they are taking away the guns and the knives, and tying both hands behind his back. Eventually it will get better, but he will always be immune compromised.
3. Post transplant lymphoma: Wikipedia says it best.
4. Vasculopathy: Heart transplant patients eventually get coronary artery disease. The question is how long it takes to get it. We’ve been told 10 to 20 years, but there can be early onset.
5. Basket of risks: This is just a mix of everything, including medication side effects like stomach issues and kidney problems, which for transplant patients can get bad.
Will he definitely get these?
It’s all maybe. Add up all the maybes and we’ll see some of them for sure, but the hope is that whatever we see will be manageable, and we ‘ll keep on keeping on whatever happens.
Ari is certain to have some level of rejection. The hope is with a lot of meds we’ll be able to manage it. Over time it often gets better, especially after a year or so.
What happens when we get home?
Ari’s first year is likely to be challenging. After we go home, we’ll be back at the hospital several times a week at first, then several times a month. He’ll have regular caths and biopsies, and tons of other tests and checks. Home life should be pretty normal (as normal as it gets at our house) assuming he’s feeling okay.
How will his immune system be?
His immune system will be very weak for a while, and always somewhat compromised. When he goes to school and anyplace, we’ll have to take extra precautions, and have to hope that others will understand and respect that Ari can’t be around anyone who is sick and will have some restrictions. For example, Ari will never be able to be around non-immunized people. He’s protected by the ‘herd’ of everyone being immunized.
Steroids will be in his med cocktail for the rest of his life. Anyone who has been on steroids long term can tell you that being on steroids is no walk in the park. However, with the steroids and other meds, the idea is to get them to a level that isn’t medically challenging or too uncomfortable for Ari day to day.
For a while, we’ll wear masks when we go out.
What if he gets sick?
First sign of sniffles for a while it’s straight to BCH. The protocol is to assume it’s rejection until proven otherwise. If it’s not rejection, Ari will have a tough time fighting whatever it is off. Over time we’ll learn Ari and perhaps that will change some, but for now, we expect a lot of hospital visits and stays.
- No Advil
- No grapefruit or derivatives (no Fresca!)
- No body piercings or tattoos
- No heavy contact sports varsity level (hockey, lacrosse, football) or competitive weight lifting
- Always strong sun screen
- No new pets for a while
- No picking up poop ever (sorry neighbors when he gets older and can walk Melody)
- Food limitations similar to being pregnant (no sushi, no deli, etc.)
- No water parks. Swimming in the lake? We’ll see…
- No Yankees paraphernalia
Ari will be on a series of anti-rejection medications and steroids for the rest of his life. He may be on a ton of other things, too. We’ll see. He can never, ever miss a dose of the anti-rejection meds. Rejection can come on fast and there are no mulligans. You don’t want to give it an opening.
What about school?
We hope he can go back in September. We’ll need to be very careful about anyone being sick, and work with the school to make sure Ari isn’t in any situations where he is at higher risk for getting sick. Schools in Stow have been great to us and Ari so we’re excited to get him back.
Can we have visitors?
Right now it’s parents only. Over the coming months that will relax slowly. When we get home for a while we will be unlikely to have visitors in the early days, but over time Ari will be able to be around more people.
What about sports?
Ari should be able to do pretty much anything over time, though a few high contact sports will be a no.
How well do transplanted hearts do over time?
Hearts commonly do well for 15 years plus or minus. Can go much longer or much shorter. Right now he’d have to get re-listed if it fails. To do that he’d need to qualify again, meaning he’d need to be healthy enough all around to get one.
Will he get a new heart again someday then?
What they’re hoping is that 15 years from now medicine – rejection, cardiac, and everything else – will be much better. And perhaps they can grow him a heart. Or print one. Or something else. The idea is to buy 15+ years, have Ari finish college, and take it from there.
How can I help?
- You can help us with expenses here at our Youcaring fundraising site. Unlike other crowdfunding sites, Youcaring does not collect a fee.
- If you want to help Ari in about 13 years, you can contribute to his college fund here. Enter code R9A-J7M to get to Ari’s page.
- You can make a donation in Ari’s name to the Ethan Lindberg Foundation.
Finally, please keep the donor and family in your thoughts. We are forever deeply grateful, and sorry for their unimaginable loss.