Meg’s Rejection & 2nd Transplant: Medical Support

UPDATE

Hi friends. So now here we are after another hospital stay, this time for a calamitous infection. A new one. My determination to fight to live has never been stronger. If I could survive on sheer eill I’d be ok. But rejection and then infection have taken steep tolls. Another transplant is the only thing left for me and now I must find a different center who will take my case.

My transplant hospital discharged me this week with the news they have rejected me as a candidate for re-transplantation due to my complexity and poor outcomes under their care.,

Our fundraising is strictly for treatment and care costs and less than half of what we actually need. I am ineligible for any kind of work of entitlement financial disability support.

Still I continue to make my stand and fight. My next steps are to submit my case for review to as many transplant centers as I can and hope that one will accept me and I’ll survive long enough to get that liver. I will likely need to relocate. I may need to agree to a very high risk liver which will bring new complications.

Survival beyond re-transplantation is not the decade I had hoped for but my prognosis is at best case 3-6 months without one. Oner look at my Gloria’s sweet 10 year old face tells me I must stick around as long as possible. 

I feel devastated. I had just starting making plans again. 

Thank you for your ongoing thoughts, prayers and energy to draw strength from. 

Love Megan

My name is Meg. Until recently I was a liver transplant survivor. Then one day in late Oct my body went into chronic acute rejection that is not responding to standard treatments and my new liver is dying. Quickly. Parts of it have just disappeared, some of them important. My kidneys are also in trouble and I’m being followed by a kidney transplant team.

I’m reaching out with a plea for help and a heavy heart. It was humbling having to ask for help once. Twice would feel just awful but I’m so much sicker now.

After my liver transplant 16 months ago, life was beginning to look brighter, I had really excellent plans. That a sudden, unexpected, severe and rare form of late-onset rejection changed everything over the course of mere days… I am grieving a life I never got to live. 

So now, I am in a critical ill health crisis, spending most of my days in the hospital, with a beyond challenging path ahead and only a 40% chance of survival. I’m told to expect to spend most of my time in the hospital for the coming months, that multi-organ failure could happen at any time and if it does, only palliative care would remain.

I will be missing from my child’s life every day until I beat this. I persevere for her.

And as I persevere I will be trapped in an institutional environment with zero privacy, where no one knocks before entering a room and the blinds on the door are randomly opened from the outside by people peeking in. Where men barge in start cleaning my bathroom while I am taking a shower with no shower curtain.  It’s a place where I am not allowed to breath fresh air, where I am alone for hours on end with no option for exercise but to wander the hallways, where I am woken up at all hours of the night. A place where I am not allowed to get a cup of ice on my own or refrigerate anything.

A hospital is the worst place to beat back the darkness of being ill. I heard at least 2 people die and their families howl in agony. I hear a little old lady cry out for help every morning. I have done my best to carve out a corner of peace because the hospital is where I will live this winter. Living and fighting at the world’s worst AirBnB. If you are local please come see me in Burlington, MA

My next planned treatments are akin to chemotherapy and dialysis and will make me immunologically fragile, feeling constantly unwell. Infections will complicate things further. I am already suffering from malabsorption, have horrible prednisone and infusion side effects and my eyes and skin are yellow and scary looking. I feel sicker than I did pre-transplant.

Still I will be fighting with a warrior heart and measured optimism, because if anyone has the stones and strength for a fight like this in the worst venue for a fight it’s me. 

My greatest challenge is my worry about the needs of others being met. That and worry about financial ruin is taxing. Your donation frees up my inner resources to overcome and endure. And to better tolerate the many indignities of hospitalization.

The first GoFundMe campaign you generously contributed to was a lifeline during one of the most challenging times of my life. We raised half of our goal, which helped immensely with the medical bills, deductibles, and travel costs. However, the cost of the transplant and ongoing medical care has left my family in debt and without the reserves for what is happening now

I am painfully aware of the kindness you have already shown and the difficulty of asking for your support again. This campaign is not just about medical expenses like our high deductible and tens of thousands in co-payments; it’s about the survival of a family with virtually no local friends or family to pitch in, it’s about an autistic child, managing our mounting debt, and ensuring that my my little tribe has the support they need during this horrible time.

Every dollar will go towards medical expenses, deductibles, debt relief, and essential support for my family. Support that we most critically need like a nanny, someone to clean, run errands, pet care, an assistant to make sure I have the things I need at the hospital - including companionship - and they have the things they need - groceries, bill paying, etc. 

I am the mother lion in my home. Things will fall apart quickly without me. Gloria is already having a really hard time and seems to scream all the time now.

And all of this critical support gets expensive quickly when you lack a local network of friends and family.

I hope you understand the seriousness of my situation and why I must ask for your help again. I hope you can see the challenge of being brave and positive while miserable, having courage while being scared not for myself but for those I love and who depend on me.

Please, Share My Story

Your support transcends beyond monetary contributions. One of the;4 most powerful ways you can help is by sharing my story with your network. Whether it's through social media, email, or simple word-of-mouth, each share opens a door to potential help and spreads awareness about our situation. The power of community and connectedness can never be underestimated. If you could take a moment to share this page, it could make a remarkable difference in our lives. 

Thank you for your kindness, generosity, your shared strength and your sharing

of this fundraising effort

Megan Kelly Macario

Fighter-Mom-Wife-Daughter-Sister-Friend-Shower Hater