A love letter to the “new” (but actually very seasoned) heart transplant mom,

This letter is for my dear friend, the seasoned Fontan mom who has suddenly found herself in the transplant world. I have had so much on my heart to tell you and have been turning this blogpost over in my mind for weeks, waiting for the right words to come.

But first, I must preface this by saying that I am in no way speaking for ALL transplant moms. I can only speak for myself, of my experience. But what I can say is that being dropped into the transplant world as an otherwise seasoned heart mom is a very particular experience, and I have definitely heard many things again and again in my conversations with many who have walked this path before and alongside me. So while my experiences are my own and unique in that sense, I do not believe they are unique to me alone, but rather what many seasoned heart moms go through during this part of their child’s journey.  And so what I want to tell you about are things I wish I had known.

Finally, if you are very newly diagnosed, I want to give you a huge hug, and then tell you to walk away from this post. This one is not for you. This may not be the time for you to read this. Take some time to start walking this road first. The part you’re on is extraordinarily emotional and overwhelming. When you’ve found your footing and are ready, please come back. Just trust me.

Now for those of you that I am writing to…

This transplant journey.

Guys.

It is HARD.

Let me repeat that again for those in the back.

IT IS RIDICULOUSLY HARD.

Hands down, the hardest thing I’ve been through.

Prior to my son’s transplant, I had been through A LOT. I felt like I was ready for anything, like transplant was just another surgery, that we’d get through it like we’ve gotten through everything else in his journey. I mean, I had seen my kid come back from the OR with his chest open and covered only by what I loosely describe as the world’s most expensive Saran Wrap. And he had been through 6 heart surgeries already. How much harder could it be?

As it turns out, A WHOLE LOT HARDER.

This transplant journey picked me up, turned me over and over and then spit me out. And EVERY veteran heart mom I have met has said the same thing. I don’t even know quite how to put it into words except to say that I am not the same person I was 6 months ago. I know one mom who lost a lot of weight. I know many (myself included) who gained a lot of weight. I know several whose hormone cycles have completely dysregulated themselves. I know one mom whose hair is coming out by the handfuls. I know another having to go through invasive dental surgery 6 months after her son’s heart transplant (not me – but I do have a couple of cavities I suddenly need filled). The transplant itself did not cause any of these things, of course. But the toll it has taken on our bodies is unmistakable and unrelenting.

The best way I can think of to describe it is to liken us to soldiers on leave from war. (I mean no disrespect to the soldiers who sacrifice so much for our country; but since it’s well documented that we also have PTSD, it seems a rather apt analogy). It’s as though, as Single Ventricle moms, we’ve done several tours in the desert. We know how to properly dress ourselves for the elements, what supplies we need, which maps are most useful, how to protect ourselves (and our kids) from the sun and sand and dehydration. We know how critical it is to have a canteen and where to get water, and what foods are safe and which are to be avoided at all costs. We are well versed in the dangers and where they lie. We have it down. We’ve trained our kids and we’re a good team.

And then suddenly, we’re told that we’re going back out. So we suit up, get what we need. We’re ready. But en route, we are told that our destination is not in fact the desert this time, but instead, we are shoved out of a plane over a densely populated rainforest we’ve never seen before. Our maps are useless here, our clothes wildly inappropriate, the water is abundant – and we’ve never even heard of the deadly bugs and foods here, let alone how to identify them. We have no idea what the dangers are, or how to avoid them. We know how to go to war…just not here.

It’s just hard.

I think one of the reasons it’s so hard is because our relationships with our children have changed over the years. Our kids had these life saving surgeries as newborns, infants and toddlers, and some after that. When they were young, we were their lifeline, their voice. We learned and loved and advocated for them. Spending so many hours bedside in the hospital in those earlier years has cemented an incredible bond between my son and me. In our family, my husband and I have taken a division of labor approach, where I was the “hospital” parent (for the most part), and he was the “take care of the sibling at home” parent. Of course, we’re both involved on both ends, but I’m definitely the default medical parent. Because of that, my son and I have always been a team. We went into his transplant as a team.

But when he came out of the OR, and in the days and weeks that followed, we were no longer a team. I don’t know what team he was on, but it definitely wasn’t mine! I was his cheerleader, so excited for this new lease on life he had, for all that was to come. But he didn’t want a cheerleader. He felt horrible. He was in so much pain and everything felt different. Sure, he had a new heart, but his body had 14 years of the old circulation that it was used to. Suddenly, everything had a new amount of blood and it wasn’t flowing the way it had before. It was so much. Not to mention, he was recovering from having been on Ecmo and major open heart surgery. He didn’t want to talk about how great it was to have a new heart – heck, initially, he just wanted his old heart back. This new one was beating too loudly, his body was too warm, his strength was gone and the new medications caused GI issues and tremors. He wanted someone to sit and feel that with him, to give him grace and empathy and an ok just to hide under his blanket and sleep, not to focus on the positive and good that was to come. He wasn’t overjoyed to have a new heart. Everything felt so different to him, and he was miserable.  He definitely didn’t WANT a cheerleader. But he NEEDED a cheerleader, to push him forward to get him to the point where he would start to feel better.

Have you ever tried to be someone’s cheerleader when they just want to mope?

It’s not fun.

The hardest part of recovery by far was the delirium. In teenagers, delirium isn’t usually like it was when they were infants. It doesn’t typically present as screaming and agitation. It presents as having a very blunted emotional response to things. It looks like staring at a wall and not responding for 3 days (one of our recent transplant buddies). It looks like not cracking a smile for 10 days (another recent transplant buddy). It looks like staring at a singular spot on the ceiling, drooling and being too tired to sit up in bed (my son). The medical team tells you it “looks” like delirium. They say they’re “pretty sure” it’s not a neurological issue, and that you just have to “wait it out.” And they’re right. You just have to trust them.

But here’s the thing – when you send your child into the OR for a heart transplant, you’re most fervent prayer is “please, Lord, just bring my child back to me the same way he’s leaving me – just with a whole heart.” So when your child comes back a shell of himself, it takes every ounce of your energy to not second guess your decision to send him to the OR. You wonder if the new heart is worth it, whether you should have just held onto that old, albeit failing, heart, just a little bit longer.

During those dark days, you’ll be exhausted. It is SO DARN TIRING being a cheerleader in the dark. When he was younger, I didn’t mind being his cheerleader, because I had this sweet, silly kid next to me, who was cheering right alongside me. But when he’s mentally checked out, that means I have to cheer hard enough for the both of us. And here’s the thing – I am terrified already. I’m in this new rainforest, completely unsure of everything, sure that my every step is going to be onto a landmine. You have no idea how much energy it takes to hide that fear, to tuck it away, to act like everything is going to be ok. Because it probably will be. But you don’t know that yet. So you have to pretend for now. But now you also have to pretend for your completely checked out kid, too. And that is A LOT.

It’s no wonder that us heart moms come out of the transplant journey looking like we’ve been through a hurricane.

Because we have.

But here’s the really cool part – IT GETS BETTER.

It really does.

It’s not overnight.

It’ll definitely take longer than you think. And it’ll probably have more hurdles than you’re expecting.

But, somewhere along the journey, when you’re so tired you think you can’t possibly get up and cheer for one more day, you’ll see your kid start to emerge again. It might only be a tiny snippet. But it’ll be a reminder that he’s in there, and that will propel you forward.

And you’ll find yourself relaxing a little bit. And thinking you might be able to even sneak out of the hospital to grab a nap somewhere or just a few minutes to yourself. Except that you are your child’s safety blanket. So he will have suddenly turned into a Clinger Level 9. And any attempt to escape for 10 minutes will be met with 10 phone calls and 19 texts wanting to know exactly when you will be returning, even though you will have clearly told him exactly where you are going and when you will be back multiple times (don’t ask me how I know this – just trust me on this one).

But even that will get better. Your child will get stronger, a little bit cheerier, slightly less clingy.

And then you’ll find yourself leaving the hospital. And he won’t be strong to run out of the hospital. He (like my son), may be perfectly capable of walking out, but would prefer to ride the wheelchair out because everything just feels hard for him. But at last you’ll find yourself leaving.

You’ll feel like you’re home free! But then you’ll be in post transplant housing somewhere (either the Ronald McDonald House or a hotel) for a couple of months. And you’ll be looking at this mountain of meds and you’ll be so beyond overwhelmed. You’ll be in a world of a whole bunch of new meds, given at multiple times a day. Meds were nothing new to us, but, and I cannot stress it enough, THE MEDS IMMEDIATELY POST TRANSPLANT ARE A WHOLE NEW BALLGAME. When my son went into the hospital, he was on 7 medications twice a day. When he was discharged from the hospital, he was on 15 medications, given 3 times a day. Some had to be given with food, and some on an empty stomach. And, because he had a new vocal cord injury, he could not safely eat by mouth. So, not having ever been tube fed other than a couple of months in the hospital after his very first surgery, he was discharged from transplant with an NG-tube. So, in addition to the medications, I was administering 4 bolus feeds a day. And having to log everything. It was so overwhelming.

BUT here’s the really good news – that part is only right after transplant. The medications start dropping off so quickly, and feeds get easier, and vocal cords heal. By the time we were allowed to come back home, he had ditched the NG tube, was down to 11 medications twice a day. And more will drop off after his 6 month cath and biopsy.

So where are we now?

My son is now 4 ½ months post transplant and doing amazing. He’s back at school, and has more energy than he has ever had. Illness is no joke, and we have to be careful. He got his first cold post transplant a couple weeks ago, and we had to pull him out of school. His recovery took longer than his peers. But he recovered and is doing better now. If you ask him, I don’t think he’s quite at the point yet where he’d say he’s glad he got a transplant. But he’ll get there.

And here is what I really want you to know, dear new transplant mom. This journey is hard. And you need to know that. BUT you are not alone. There are so many of us who have traveled this path before. When you get to the dark parts of this journey reach out to us. When my son was in the thick of it, I had 3 moms who had just been through transplant with their single ventricle boys, and they were my lifeline. There is no better reassurance than hearing someone say “I’ve been there before and made it through.”

Because this is the really important thing to know – TRANSPLANT IS A BEAUTIFUL GIFT.

As a single ventricle parent, you’re taught from the very beginning to fear transplant, that it’s a last resort, and only if the surgical route fails. And with good reason – there aren’t enough hearts to transplant babies as newborns, and the palliative surgeries do so many wonderful things. They allow single ventricle patients to get to their teen years, and even adulthood! And many, many, single ventricle patients thrive with the Fontan physiology.

But my son was never a “good” Fontan. He was an average Fontan. He did ok. But he couldn’t keep up with his friends. He couldn’t run, or even walk particularly fast. His function was fine, but he generally just didn’t feel good a lot of the time. I think I am only just now beginning to realize the extent that his heart defect affected every single aspect of his life. Now, with a whole heart, he has the freedom to live his life. He doesn’t have to plan his activities based on what his body can handle. He can run and keep up with his peers now. He is only just beginning to uncover what his body is capable of. I cannot even explain what that process is like to watch unfold.

Transplant is not easy. And it’s not a cure. As many say, it’s just trading one set of complications for another. Transplanted organs don’t last a lifetime. My son will always be on medication. He’ll always be immunocompromised. And he’ll always be at risk of rejection. But for my son, and so many others, it is the most beautiful and amazing gift he could have ever been given.  We are so profoundly grateful for this gift.

I just returned from a wonderful Learning Session focused on improving outcomes for patients living with Single Ventricle physiology. It is an incredible network that does so much for patients like my son and their families. I am still trying to figure out where my place is in the Single Ventricle community, now that son has a whole heart. I’m not sure yet.

But here is what I do know. The Single Ventricle journey can take many paths. I am so grateful for the incredible efforts being focused on living with Fontan circulation, because it is hard and there is so so much room for improvement.  But for some patients for whom the Fontan circulation is doing far more harm than good, in being so focused on retaining the Fontan circulation as long as possible and making transplant the enemy, I truly believe we are doing the single ventricle community a huge disservice. Transplant is a beautiful thing. It’s not an easy journey, but is 100% worth it! Let’s normalize transplant as one part of the Single Ventricle journey, instead of the point of drop off or failure. Let’s come alongside these children and adults and their families when it’s time for transplant, and support them and celebrate them in this next step on their journey.

So, “new” (but actually very seasoned) heart transplant mom, you got this. Take heart. You have an army of us ahead of you on this journey ready to welcome you, and your special kiddo, with open arms. So much love from my heart to yours.

P.S. I’d tell you to make sure to take care of yourself, but let’s be real. We both know that’s not gonna happen. So I won’t waste my breath.  Just do what you can. XOXO