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Five years ago, my mom nearly died the same day her grandson was born. Her life was eventually saved by a stranger who became her organ donor. At the time, the events were fast and furious, and our emotions were compressed in a way that’s hard to express. Later I recorded everything I could remember in a stream-of-consciousness-like-way, and I transcribed pages of texts that were exchanged among my family to help me process all that had happened so quickly. It was my form of therapy. This is our story.


 

I thought she was dead.

My plane had just landed, and I flipped my phone on to find a strange message from my cousin. She was crying, and she barely choked out, “I’m so sorry about your mom…”

So sorry about your mom???

What is she talking about?!

With my heart pounding and unable to breathe, I found myself shuffling off the plane, surrounded by my fellow passengers. I was suddenly feeling suffocated by their mere presence. Get out of my way, people! I sent my brother a frantic text with trembling fingers:

March 10, 2009 – 11:26 am:

Just landed. Had a weird message from [my cousin]. Everything ok? I am scared.

Within minutes, he was calling me. WHY IS HE CALLING ME??? If everything were fine, he would send me a quick text.

OhMyGod. She’s dead.

I answered the phone, hardly able to squeak out, “What is going on?!”

My brother reassured me, “She’s stable, okay? I’ll tell you more when I see you. I’m pulling up to the curb.”

“No, tell me now. What is going ON?!”

“Well, Mom had a bit of a rough night, but she pulled through.”

She pulled through?!! How bad was the night?!!!!”

“Look, I’ll tell you more when I see you… It’s okay – hang in there.”

I remember being on the tram at the Minneapolis airport during our conversation, sobbing through my words to my brother. I felt dizzy, my senses overloaded as I took in all the people and the movement swirling around me. When I stumbled outside with my lightly-packed carry-on in tow (as I was only supposed to be staying for one night), my brother got out of the car and hugged me like he never had before. He’s never been very emotional with me (that’s my job!), so his affection frightened me even more.

As he started driving, we both stared straight ahead. He took a deep breath and started with this: “I don’t want to scare you…” Long pause. I remember him turning his head to the left then – away from me and from all that he needed to say. So much had happened the night before, but since I was on the first flight out anyhow, nobody thought it would do any good to tell me what was going on until I arrived. (That’s why my cousin would have assumed I was aware of my mom’s condition – 12 hours had already passed.)

Finally, after what felt like a very long time, my brother managed to verbalize this: “She didn’t even know who I was…”

And so our nightmare had begun.

How had things changed so quickly?? I had just talked to her the day before, and she told me it was silly I was even coming…

……….

Very early that same morning, I had pulled out of our neighborhood in North Carolina to head “home” to Minnesota for one night. The song Don’t Tell Me if I’m Dying by Thriving Ivory came on just as I started driving:

Don’t tell me if I’m dying, ‘cause I don’t wanna know.

If I can’t see the sun, maybe I should go.

Don’t wake me ‘cause I’m dreaming, of angels on the moon…

Where everyone you know, never leaves too soon.

I remember being struck by the lyrics and thinking how sad that must be when you know you’re about to lose someone you love. And I remember being so thankful that my mom’s condition wasn’t serious.

I had no idea she was already in a coma, fighting for her life.

……….

The day prior, my mom sat in a hospital bed, jaundiced and weak, but otherwise herself. The doctors were still unsure of her diagnosis; however, nothing seemed terribly alarming or time-sensitive at the time.

Meanwhile, at a hospital across town, my oldest brother and his wife were welcoming their first child (three weeks early) after my sister-in-law’s water broke during the night. The birth was not without complication, but thankfully, their son arrived safely.

My mom was thrilled to learn that her newest grandchild had been born – a boy! Her oldest son was a father now. The baby was named for his two grandfathers. It was a perfect moment – except for the fact that my mom will never remember it. Shortly after the news of her grandson’s birth, she began to say things that didn’t make sense.

……….

“We better put some straws on those flowers” was the first bizarre thing she said, alarming my dad. Then she started rocking over and over, repeating, “Okay, okay, okay, okay…” She was strangely strong, and they couldn’t settle her down. She was jerky, like she was trying to crawl out of her own skin.

My dad alerted the doctor who began asking her questions:

How old are you? Oh… I should know this… 26? (She was 60.)

Where are you? My house?

What time is it? Ummmm… one second?

That was all he needed to hear. The doctor immediately “coded” my mom to get everyone to come running to her room. She was intubated as quickly as possible as the doctors put her into an induced coma in an attempt to protect her brain.

My oldest brother – the new father – was called just hours after his son was born. He was sitting in the hospital across town when he heard my other brother’s voice: It’s Mom. I think you’d better come now.

……….

Texts to my husband:

March 10, 2009 – 11:31 am:

Just landed. Guess mom had rough night. In icu. [My brother] picking me up now. Scared to death. Tell u more when I know more.

March 10, 2009 – 11:58 am:

Almost lost her last night. Stable now. Will be staying longer than I thought. Getting to hospital now.

……….

When I arrived at the hospital, my dad was the first person I saw that I knew. “Hi, Honey,” he said calmly, with a small smile. I buried my head in his chest for a long time, bawling and shaking – his little girl once more.

He was the one to finally pull back. Still calm, he told me, “She said out of the blue yesterday after we knew [my brother’s wife] had gone into labor, ‘Well, you know what they say… when one person arrives in this world, another one leaves…’”

My dad’s chest heaved then, and he choked out: I just never thought it would be her…

……….

One of the doctors approached us shortly thereafter. He told us to prepare ourselves. Their last few patients who crashed as fast as she did never made it back again. We needed to understand the gravity of what was happening.

But (thankfully there was a “but”) they finally had a diagnosis for her. After 4 days in the hospital, they now knew what they were fighting. A biopsy of her liver could detect rare markers in the blood. She had autoimmune hepatitis – a condition where the body attacks its own liver. The bad news was that hers was already very advanced. The good news was that patients typically respond well if they can get a liver transplant.

With that information in hand, the first challenge would be getting her on the transplant list. The second challenge would be keeping her alive long enough to get the transplant.

She had days, if not hours, to live.

……….

I sat next to my mom, holding her hand in both of mine. She was nearly unrecognizable. Her skin was an orange color from the jaundice, like she’d had a field day with self-tanning lotion. I remember her ears being especially dark. Tubes partially hid her face, and she was wrapped in bubble wrap to keep her body temperature up (it dipped during dialysis).

Her closed eyes were stretched wide, and she was bloated and puffy from the fluids they were pumping into her – it made her hand squishy. It was soothing for me in a strange way to press on the back of her hand with my thumbs and feel my fingers sink into her spongy skin. I played with her hand as I spoke to her, wondering if I’d ever hear her voice again.

……….

That afternoon, we received our first bit of good news. They were able to get her on the transplant list. She was showing no signs of brain damage or infection, and her body was healthy (thank God) except for what her liver was doing to it. She was a perfect candidate for a transplant.

Because of how acute her condition was, she was given what’s called “1A Status” – she shot to #1 on the transplant list. She’d be the first to receive a matching liver in the 5-state area, and she could be eligible for a liver nationally as well.

And so our wait began.

At the time, there were 17,000 people waiting for a liver across the country. My mom was at the tippy-top of that list – both a blessing and a curse – a blessing because her wait could be short; a curse because it meant she was knocking on death’s door.

The average wait for a liver was 16 hours (for a person with 1A status). We weren’t even sure she could make it that long. One doctor tried to reassure me with this hard-to-swallow fact: “I know it sounds terrible to say this, but the odds of getting a liver for her quickly are good. She’s A-positive, which is the most common blood type in this area. It’s going to get dark soon – it’s snowing, and there is ice on the roads…” His voice trailed off then, but his eyes locked with mine. He then looked down to the floor, turned, and walked away.

The reality of what we needed to save my mom’s life hit me like a ton of bricks in that moment. A wonderful person out there driving just might become my mom’s donor later that night.

I thought I was going to throw up.

……….

We took turns trying to get some sleep at the hotel across the street. I didn’t sleep a wink. I felt wired and unable to catch my breath – my mind raced endlessly, and I couldn’t settle down to rest. Every time I heard a siren, I bolted upright in the bed. I hoped that siren brought our answer; then I felt ashamed for wishing so.

I can’t even begin to explain the web of emotions you feel in that situation. You can’t pray for medicine to work a miracle. You can’t pray for a surgeon to fix what’s already there. To save the one you love, you have no choice but to pray for the unthinkable.

So when I heard those sirens over and over and over as each ambulance raced to the hospital across the street, I scrunched my eyes tight, and I prayed desperately:

PLEASE. Please save her life. If your life is cut short, please be an organ donor.

But no liver came that night.

……….

Just after 4:00 am, my dad and I headed back to the hospital to relieve my brother. It was no use trying to sleep. We stepped out into the cold Minnesota air. It was already mid-March, but the temperature was still a frigid -20°. I couldn’t stop shaking but not just from the cold. I knew my mom could die that day – or she could be given a second chance at life. I wanted to fast-forward so I knew what was to come, but I was afraid of the answer. I felt frozen in every sense of the word.

……….

March 11, 2009 – 9:31 am [to my husband]:

Mom made it through night. Pretty stable whole night really. Pupils r crisp & reactive when checked so good sign her brain is hanging in there. Praying so hard that a liver comes today.

But no liver came that day either.

……….

I remember being asleep on the floor of the waiting room when my brother gently touched my leg. I shot up immediately to find him crouching near my feet with my dad standing above him. They were both smiling.

There was a liver, and it was a match.

March 12, 2009 – 6:28 am [to my husband]:

Liver might b on the way!!!! Trying not 2 get too excited. Doc on way to IL now… If they r happy with it they will bring it back & surgery may b this afternoon. Keep u posted. We r hopeful but have to b realistic that they may not b happy with liver once they c it. Keep your fingers crossed. 

……….

Our elation didn’t last long.

Sadly, the man who died had endured his own health problems – namely with his liver. While the rest of his organs surely did, in fact, save many lives, my mom’s would not be one of them. Unfortunately, when the team got to Illinois, it was decided that the liver wasn’t healthy enough to transplant – it wouldn’t give my mom the best chance at life.

The team had no choice but to fly back to Minneapolis empty-handed, and our wait continued.

……….

My mom was a fighter. It had been 50 hours since she was put on the transplant list, far more than the average 16-hour wait; and still, she remained stable. But we knew the tides could turn at any moment. Her time was running out.

The TV played in the corner of the waiting room where we spent all our time. When the news came on, there were always stories of car accidents and tragedies. We all sat silently, thinking the same things. But still no liver came.

Meanwhile, my brother and his wife took their new son home from the hospital. That baby boy was our beacon in the middle of this storm. Would he ever meet his grandma?

……….

Later that same day, the answer to our prayers finally came.

March 12, 2009 – 4:56 pm [from my brother to me]:

Just tried you… mom is going to the OR within the hour. Call me.

It was a sea of confusion as we tried to figure out what was going on. Everything was happening so fast. Time was of the essence.

March 12, 2009 – 5:15 pm [to my husband]:

Trying to call u but can’t get call to go through… We r told that she is going in within the hour for transplant but have no idea where liver is coming from. Call me if u get this.

My mom was suddenly being wheeled down the hallway on her hospital bed. I remember running (literally) to catch them – I had to tell her I loved her. A liver transplant is a very bloody, complicated surgery. Even if she made it through surgery, her body could reject the liver. We knew there was still a very real chance she may not survive. I had to say goodbye – just in case.

March 12, 2009, 5:56 pm [to my husband]:

Call won’t go through again… We said goodbye & she is headed to OR!!!

……….

The surgery would take nine hours. At one point along the way, my dad and my brothers headed to The Big 10, a restaurant nearby (seriously, how many times could we eat there?). The conversation before they left went something like this: “We all have to eat at some point, but someone should obviously stay here in case they come out to tell us anything. The Minnesota State Hockey Tournament is on (this is a huge deal in my home state), but we can’t get the game in the waiting room. Christy, you don’t care if you see the game, do you? We didn’t think so. Why don’t you stay here, and the rest of us will go eat…”

And just like that, they were gone. :) Even though there were still many hurdles to clear, the mood was already lighter now. It was such a relief to feel the pressure lifting from my chest – we finally had hope.

So I found myself alone when the surgeon came out to tell me that all was going well. “Your mother is stable, and things are picture-perfect.” It was music to my ears to hear those words. “We’ve removed her liver,” he continued. “Now we’re just waiting for the new liver to arrive.”

Wait – what??? The liver hasn’t arrived yet?! You mean you remove the liver before the other one gets here? What if something happens to it on the way??

Not long after our conversation, her new liver did arrive safely. The team in Wisconsin had to bring it to Minneapolis because the local team had still been flying back from Illinois – there had been no time to wait for them. They delivered a perfect, healthy organ – slightly larger than my mom’s original liver, but the surgeons could work their magic to make it fit just right.

Just before 2:00 am, we learned that the liver was finally in, but three more hours of surgery would remain. I remember my oldest brother heading home then to his wife and their newborn, and he asked my dad to text him when our mom was out of surgery. My dad was no texting wizard at the time (he’s marginally better now), and he looked blindly back at my brother:

“I’m not sure I can do that.”

My brother then said, “Just text me, ‘OK’ and I’ll know what that means…”

Blank stare.

“Just send me the letter ‘K’!”

Blink. Blink.

“OhMyGod, are you serious, Dad?! Just text me any letter or number!! Anything. And I’ll know that’s the signal that Mom is fine.”

To this day, I’m still not sure if my dad managed to send him a text that night. The sense of humor that runs deep in our family had officially returned in that instant. It was a good feeling.

……….

She came through the surgery beautifully, but there were new mountains to climb. I felt like numbers and medical terms swirled around us: Heart attack risk. Liver rejection. INR 1.2. Potassium 4.5. Creatinine 2.2. Frozen plasma. Potassium cocktail. Hemoglobin. Blood pressure. Blood sugar (she’s diabetic). Dialysis. Bilirubin. It means little to me now, but at the time, we hung on each lab report.

……….

I had been in Minneapolis for four days, but it felt like a lifetime. I wanted to burn the only clothes I had with me. I had showered just once. We hadn’t been sleeping much – or eating well. I missed my own little family, especially during such a gut-wrenching time.

At home my husband had gotten sick within 48 hours of my leaving. He was completely run down and overwhelmed by what it took to care for our three girls under the age of 7 by himself – and he was even able to work from home during the stretch that I was gone. It became a joke among us all that every time I spoke to him on the phone, the doorbell would ring: “Oh, that must be our dinner!” Nobody was bringing my sister-in-law meals in California! I don’t think he cooked dinner the entire time I was away. And yet he still managed to come down with the mother of all colds (I like to call it “the man flu” – appropriately named, I think). :)

That part of this experience was quite comical, actually. He said to me, “It’s not that I can’t handle all that there is to do; it’s the RESISTANCE I meet from the girls along the way!” Simply doing their hair each morning was a complete debacle for him. He had officially done zero laundry. He’d wait in the car up at the bus stop, and when the minivan door slid open and my oldest daughter saw that it was him inside to pick her up after kindergarten once more, she’d mumble, You again??”

Our young daughters were also trying to make sense of what had happened: Does Grandma have a hole in her belly now? Did the new liver have to be the same color as her old one in order to match? Dear Lord, thank you for not letting my grandma die – she’s my only grandma in the whole wide world, and I love her.

As we waited anxiously for a liver, thoughts of all else had fallen to the side. It was like we’d been living in a vacuum. But now that my mom had pulled through surgery, thoughts of my regular life began to return… I was still a mom myself.

March 14, 2009 – 6:56 pm [to my husband]:

Might want to check preschool calendar on board in kitchen. Can’t remember when [our daughter] brings snack. Think she is supposed to wear green on Monday too. 

The next day on March 15, I ended up flying home to North Carolina. We were told that my mom might not be alert for days, and there was no need for all of us to be by her bedside. Leaving that hospital before I was able to see her open her eyes was one of the hardest things I’ve ever done. But my own family needed me, and I had faith that all would be okay.

Her rebirth had begun.

……….

My mom wouldn’t wake up until St. Patrick’s Day – 5 days after her surgery. She had entered the hospital 11 days before, jaundiced and tired. When she woke up, she had a new liver and no knowledge of what her body had endured, nor did she understand the emotional stress we had been under as her life hung in the balance.

That basic fact created a real disconnect between her and the rest of us for quite some time. While she was infinitely grateful for the gift of life she’d been given, it was like she didn’t know how to wrap her mind around all that had happened while she had been asleep. On top of that, she was foggy and her personality seemed to change initially – she still spoke nonsensical things at times. She was confused, almost childlike, and she showed very little emotion.

Apparently this type of behavior is exactly what you’d expect after someone comes out of a coma, and we were told to prepare ourselves for this. But it was still hard to handle. Of course, we were elated that her life had been saved, but it was like the person who had returned to us was someone we hardly knew.

As she recovered, her mind began to clear – but she was still exhausted and weak. She could hardly eat a thing. She resisted doing much of anything. An avid reader, she refused even to read the newspaper – her arms got too tired trying to hold it, she said. All she wanted was to leave the hospital, for people to leave her alone and stop telling her what to do – but until she had stable numbers, regained some strength, and could eat more on her own, she’d be going nowhere. She was depressed and withdrawn.

Her recovery had many ups and downs medically, physically, and emotionally, but finally, on April 13, 2009, after 38 days in the hospital, she was released. (My dad said it felt like they were breaking out of prison!) The next few months continued to be difficult, but overall, her body responded to the transplant remarkably well. It had been a huge success. Her doctors had done amazing things at the University of Minnesota Medical Center.

We were told to expect complications because of the complexity of a liver transplant, but (knock on wood), my mom has had no setbacks related to her liver. She’s truly “herself” again. She celebrated her fifth rebirthday last month, and she has enjoyed watching my nephew, now 5, grow into a mini version of his dad. They will always share a special bond, as their stories of birth and rebirth will forever be intertwined. She’s also been able to see two more grandchildren join our family; all eight grandkids absolutely adore their grandmother. My mom travels a lot, makes a huge effort to spend time with those she loves, and brings joy into the lives of everyone she meets – she’s truly one of those rare gems. In every sense of the word, her life is full.

On that cold March day in 2009, an angel got her wings. And we will be forever grateful to the strong and vibrant 41-year-old woman who left a part of herself behind as she left this world.

To say thank you could never be enough.

I often think about how different things were for both families on that fateful day. Us, in Minnesota: desperate, terrified, hopeful – and then overcome with relief that brings you to your knees. Them, in Wisconsin: shocked, grief-stricken, devastated – and then making the choice to allow their loved one’s death to give new life to others who were still fighting for theirs.

This stranger and her family are heroes to us. They surely saved many lives that night, including my mom’s.

To say thank you could never – ever – be enough.


 

 

April is National Donate Life Month. Are you an organ donor? Please register here to consent for organ donation, and discuss your wishes with your family.

From Donate Life America:

Transplantation is one of the most remarkable success stories in the history of medicine. But despite continuing advances in medicine and technology, the need for organs and tissue is vastly greater than the number available for transplantation. Currently, more than 120,000 men, women, and children are awaiting organ transplants in the United States. An average of 18 people die each day from the lack of available organs for transplant.

For more information, please go to www.donatelife.net.

………………………….

You can find more of my “from the heart” posts here:

How Having One More Baby Has Changed Me as a Mother

I Can Feel It Happening – My Daughter is Slipping Away

Thoughts on Moving: Missing Home and Finding it Again

Don’t Be a Hater: Support Your Fellow Women

 

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Thank You Could Never Be Enough - The Liver Transplant that Saved My Mom's Life by Harvard Homemaker

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