What a year it has been! It started with the words no one wants to hear and was followed by denials from multiple medical institutions, invasive cancer treatments, fighting to be listed for liver transplant and grasping on to hope along the way. Next came a life saving liver transplant, major complications that put me in the ICU for weeks, recovering in New York City during the Covid-19 pandemic and 3 months away from my kids. Today marks 1 month of being back home with my family and reflecting on an incredible journey I will never forget.
It’s hard to put into words what the amazing support we have received from you means to me & my family. The only thing I can say is THANK YOU from the depths of my soul. Your words, thoughts & actions carried me through the highest of highs & lowest of lows. You were the prayer warriors & army of hope that have been there and I will always have a special place in my heart for you.
So many things can define who we are as individuals but what I’ve learned from this incredible journey is that what defines us is how we live, why we live & the manner in which we live. I am so very grateful for the second chance at life I have been given and will do my best to pay your words, thoughts & actions forward.
May God Bless You All,
Just a quick update to let you all know that Nick is coming home TODAY! I’ll write more when time permits but in a nutshell I have been back with the kids for about two weeks. Nick had his 3 month scans on Friday and everything looks good and is healing very well. So many emotions and so much gratitude.
My family, along with all of you, have been waiting a very long time for this moment. 384 days to be exact. Every ounce of fear. Worry. Hope. Prayer. Confusion. Optimism. It can all just go away for today. We know it’s not over and that we have so much ahead, but today, its all gone. Today, all we get to feel is excitement and pure, raw, beautiful joy. Nick did it, you guys. He is our absolute champion…and he’s coming home 💛
Hey you all…I hope this note finds you safe and healthy. Just thought I would drop you a few lines to let you know how Nicks been doing.
We are having a pretty darn difficult time grasping that he is almost 8 weeks post transplant. This time has flown and drug all at the same time. Nick continues to improve by the day. He tends to have bloodwork on Mondays and e-visits with his team on Wednesdays. There has been a ton of blood level observation and medication tweaking….it’s really amazing to watch how all of this works. It’s such a science, yet such an art all in one, if that makes any sense at all. Continue reading
Nicks bloodwork from yesterday came back. His liver labs are all continuing to trend in the right direction. His body seems to be absorbing his anti rejection meds much more efficiently now, too, so they can knock the dosing of those down a bit. All really wonderful news. He will have labs next week and we will continue reevaluating as we go. He’s feeling well, seems to be improving by the day and his incision is healing beautifully. He’s been doing an awesome job of staying on top of his meds and blood pressure. All so positive.
So many of you have asked what’s keeping us out here..and I’m realizing I’ve never really explained to you the deal… Continue reading
Disclaimer: I, in absolutely no way, want to lose sight of the true hero here, my husband and the patients that fight so tirelessly day in and day out. The strength and healing comes from them, both physically and mentally. What I hope to achieve through this post is awareness for all of those that might be fighting along side those fearless patients and struggling or feeling discouraged. It is our job as their family and friends to do our part in supporting them emotionally, even in just the most simple and basic ways. I am so incredibly grateful to be one that is supported so very well, and to have experienced first hand how impactful this support can be.
I’ve done my very best these last 11 months. I’ve had to process the possibility of losing my partner, my love. I’ve had to come up with a plan of what parenting alone for the rest of my life might look like. I’ve gone over in my head how I might have to explain to my kids that they’ve lost their father; what that unimaginable scene might entail. Continue reading
Nicks appointments went well today. He had bloodwork, we met with someone from the liver team and also saw a cardiologist. He checked out well in the liver department. No big concerns…no fluid retention…his incision is healing nicely..they even took his staples out..and I can tell you that was not fun to watch; he’s literally the most brave human I know. The appointment with the cardiologist went well, too. We were assured that while Nicks aortic dissection will need to be followed from here on out with check-ups, it is not of urgent concern right now. And hopefully keeping his blood pressure below normal will help keep any complications at bay. He will have repeat scans in June either at the U of M or here, depending on where we are when that time comes. But for now, we just need to continue monitoring his blood pressure at home three times a day. Great news.
I had a flight booked for tomorrow to go home to be with the kids; Nicks incredibly kind friend was planning to come stay with him while I went back-I just don’t have the words for this mans selflessness and willingness. But we decided after talking with his health care team that it probably isn’t in the cards for me anymore with all of the viral stuff that is going on…for many reasons. Truthfully, my heart has never ached so much in my life. I allowed myself to go down a really dark hole. I buried my head in a pillow and sobbed for what felt like most of the afternoon. Why do the roadblocks keep piling on? My kids don’t deserve an ounce of this; they need their mommy. How can I possibly lean on others to get them through all of this e-learning and change with school being out? But mostly, how am I going to have the heart to tell them that now I can’t come home tomorrow? Will I lose their trust? Will they give up on all of this? My mind went in a million different directions. But then, a silver lining presented itself late this afternoon: Continue reading
We are going home to our teeny little NYC apartment today and we couldn’t be more excited! Nicks scans came back stable and his bloodwork has improved over the last two days too. His drains are all removed and all he has left is two IVs in his arm which they will remove before we leave.
Its an incredibly emotional day around here. While we can not wait to finally take the next step in Nicks healing, we have developed relationships here at the hospital over these last three weeks that have impacted us in a way I can’t describe. These are the people that have shared in some of the worst days of our lives yet the hope and drive they had for Nick through it all was palpable. The people who fought along side him to get to the bottom of every single obstacle. The ones that rushed, calmed, listened and advocated. And the ones that checked in with us about our kids and showed true empathy and understanding of not just what Nick was going thru physically, but how our family was doing emotionally. Its been such a trying time and we’ve been away from home and security, yet I’m not sure we’ve ever felt so supported. It’s truly amazing how total strangers can so quickly become your family. I’ll never be able to translate to you just all that’s happened along side these people, but our hearts are forever changed. Continue reading
Hello all….just checking in. Not going to bombard you with every detail that’s gone on over the last few days because, truthfully, so many things have come and gone. Will just give you the quick lowdown on where Nick is now.. Continue reading
Thank you all so much for your prayers and love..it’s truly such a big part of Nicks healing. Here’s the latest..
Nick had repeat scans yesterday and they showed that the dissection in his aorta has remained stable; we are so grateful. There is possibility that they may need to intervene on this down the road, but for now they are hoping to keep things at bay and stable with tight blood pressure control. Everyone is very perplexed by Nicks aneurysm history and there’s some concern there genetically, but right now they will watch things closely to make sure things are kept at bay and Nick will have genetic testing likely after discharge. While all of this is scary, we just have to stay present and trust. We won’t let this worry get in the way of how much Nick and his teams have accomplished this far. Continue reading
Just here with a quick status update on Nick..i hope this note finds you all well.
Nick made it back down to the transplant unit a few days ago and was doing fine…but we had to head back up to the SICU last night…i suppose third time is a charm. Continue reading