Jack happened to be in Boston for work, again, which is an amazing coincidence. His going there has turned out to be my good luck charm! He said he would come here instead of going to Maine with his dad!!! Liana is coming tonight, too, so my mom won’t have to wait alone. She doesn’t want my dad to fly in until we’re sure it’s a go.
My mom took FOREVER to get ready. We got to the hospital four hours after they called us—the time you’re allowed to take. Her reasoning was that the last two times we raced over they kept us waiting for more than ten hours and she hadn’t properly prepared the house (whatever that means). This time she wanted to throw out trash, get laundry done, clean the house in case it’s a go. By the time we were in the car, on our way to the hospital, we got calls from four different people, all asking where we were. One was a coordinator who was really nasty on the phone.
We didn’t even go to a room on the floor this time, probably because we were so late. We just went straight to pre-op and they did the testing there. Everything was rushed and frenzied.
Jack showed up from Boston shortly after we got into the room. Everyone was talking over each other, and there were about five people surrounding me the whole time.
Eventually they took me into the O.R., so this time, I actually had to say goodbye to my mom and Jack for real. I was stressed-out in the O.R. They gave me two doses of Versed. A nice doctor, a cardiac fellow, put old episodes of Friends on her phone for me to watch. Eventually, Dr. D’Cunha came in and told me that the lungs were no good. I don’t really remember what he said besides that. But he had talked to my mom and Jack for a long time about it so they shared the details.
It was a very young donor, a drug overdose. The lungs looked good and would’ve been a perfect match other than being hep C antibody-positive*3 but when they opened him/her (they don’t tell you the gender) they saw the person had aspirated, and when they stress-tested the lungs, they started leaking fluid, which made it a no go. I guess EVLP is a good thing to rule out bad lungs.
9/10/17
We got another call!!!!!
TRANSPLANT
9/11/17—Diane
Nine-eleven is an inauspicious date for transplant but after twenty-four hours it’s a GO!! Hoping God, karma, science or a medical miracle will help Mallory to the other side. Surgery could take twelve hours.
* * *
***
After a long night and a seemingly even longer day, Mallory’s surgery was deemed a success by Dr. D’Cunha, who said her new lungs are pristine and the procedure went well. The next twenty-four to forty-eight hours are critical as that’s when she is at risk from a surgical perspective. After that, the big concern is cepacia, as this deadly superbug can still colonize the new lungs. We are cautiously optimistic!
As Mal lies heavily sedated on a ventilator, and we dare to dream about a new life for her, we shed a tear (many in fact) for the selfless person who gave our daughter the gift of life. We aren’t allowed to know who provided the lungs so we throw our eternal gratitude into the universe and hope it finds its way to the family and friends of our beloved donor. We can’t imagine their grief but will remain forever grateful.
9/12/17—Diane
Twenty-four hours post-op—Mal is stable and doing better than expected. Vital signs look good, no fevers, minimal sedation, less O2 needed than anticipated, and, most important, tolerating the ventilator! Tomorrow she will go back to the O.R. so Dr. D’Cunha and his team can close her chest (left open so the lungs settle in). Hoping that by end of day tomorrow we will be over the surgical hurdle. Jack arrived late tonight!
9/13/17—Jack Goodwin
Diane texts me the room information. “CTICU Rm 18.” That’s cardiothoracic intensive care unit, room 18. Mark meets me at the elevators.
It is 2:00 a.m. when I see her, the first time since I left two and a half weeks earlier after the third dry run. Diane and Mark are exhausted so I’m on the night shift until 6:30 a.m., watching her.
She is sleeping soundly, faceup, about two dozen lines running across her body. The data lines run to an LCD screen behind her head, giving a full ten-second visual readout of seven body measurements. The rest of the lines pump in medicine. She has a ventilator hooked up to her lungs; a tube the diameter of a quarter goes in through her mouth. She won’t be able to speak until she has it out.
She’d written short notes on a clipboard in order to communicate.
Her first question: “What medicine am I on?” She always likes to be in charge, especially of her own body.
I sit down and take it all in, getting used to the feeling of wearing a full-body medical gown, gloves, and face mask. Here we are, just us, in a moment we had both dreamed about—me since I met her, Mal for a lifetime.
The whirring of the medical devices makes the room strangely peaceful.
I’m beginning to doze off when her eyes flicker awake. She blinks a few times, slowly tilting her head to see if anyone is in the room. I stand up to put my face in her field of vision. She sees my figure in front of her, her eyes beginning to focus. She reminds me of a sloth waking up from a nap, but one who is also extremely high.
The recognition hits. Her eyes bug out and get huge, her arms rise up and start swinging about in the air. The LCD health monitor lights up in protest. Alarms blare and red warning lights flash.
“Whoa, whoa, whoa, heyyyy, Hi, yes, calm down. Chill, Chill, Chill…CHILL!”
Her heartbeat has jumped to 185. Her blood oxygen level starts to drop, her minimal energy stores used by all of the effort she is expending. She motions with her hands for me to get her pen and clipboard with paper.
“I have SO much to tell you!!” she writes.
I had thought she wouldn’t be fully lucid for a few days. That clearly is not the case. I guess she is overachieving even now. So typical.
We catch up, our progress hindered by her lack of muscle memory for writing combined with her memory fog, which causes her to forget the topic of a sentence halfway through writing it.
I can’t stop smiling.
She is alive, breathing, and the proud new owner of two lungs she was not born with.
“What does my chest look like?” she writes.
I tell her, “I could describe what it looks like, but there’s a lot there, you sure you want me to describe it?” Her chest is still very much open but covered by bandages and her gown. She can’t feel that part. Yet.
“Wait, describe what…?” she writes, then stares blankly. She can neither remember nor see what she has just asked.
The sun rises and my shift ends as Diane comes back to take over.
9/13/17—Diane
Mallory had surgery mid-morning to close her chest and is now recovering in ICU. Watching her still sedated and connected to the ventilator, with tubes everywhere. I can hardly believe she’s on the other side and that things went so well. Dr. D’Cunha (the AMAZING surgeon) and Dr. Plewski (the INCREDIBLE head of CF at UPMC) say she’s surpassed expectations!! Still a long road ahead, but now that her chest is closed we can work toward the goal of getting her off the vent. It’s been a VERY difficult few days in terms of pain.
9/13/17—Jack
I wake up in the apartment around 3:00 p.m. and make my way over to the hospital. Diane tells me it has not been a good day for Mal.
Now that she is recovering well, the doctors want to wean her off pain, nausea, and anxiety medication, enough so that she can control her own lungs for the first time—without the ventilator. The only problem is, when you take away the medications that make you not able to feel things, you start to feel things.
It’s been hard but might get a whole lot worse before it gets better. I settle in for a long night on my second watch.
She has pain, nausea, confusion, nightmares, hallucinations…it’s overwhelming for her.
“Do they have all of their knives? There might be one that got stuck behind my left lung.”
No, Mal, they have all of their knives.
“My whole body feels like a squid.”
I know, Mal, I know.
“Is there someone standing behind me?”
No, Mal, no one is there.
“Is the ceiling leaking? It’s dripping all over me.”
No, Mal, the ceiling is fine.
“Is my skull bleeding? Did they operate on my brain by mistake?” No, Mal, your noggin looks great.
It’s a long night. She calms down when we hold hands.
Somehow, we fall asleep.
* * *
—
Sometime later, she shakes me awake, asking for her pen and paper. With the most concentration I have seen so far, she writes a note that I will never forget.
“You have so far exceeded my expectation of what is possible for love.”
I have gotten into the practice of reading the words aloud as she writes them, slowly, so she can rewrite words that end up being illegible. The full weight of the sentence does not hit me until she draws a heart.
I look up from the clipboard and into her eyes as she gazes back into mine.
Amid all of the chaos that we have become accustomed to, despite all of the hardship, Mal and I have survived, we are here, as a team, in the middle of the greatest battle Mal will ever have to fight, hopefully.
Red lights flash and alarms blare.
“WARNING! THE FOLLOWING LIMITS HAVE BEEN EXCEEDED: HEART RATE, BLOOD PRESSURE, OXYGEN SATURATION, BREATHING CADENCE,” the screen reads.
Shit…shit, shit, shit!
Panic sets in. I realize I need to calm her down.
“I forgot to tell you, Cooper had a really big poop today.” Cooper is her nine-pound dog, comprised primarily of white fluffy fur and love.
Her lips smile around the ventilator tube.
“Nice,” she writes.
One by one the alarms flicker off. A nurse has rushed in, ready for anything.
“We’re okay. Totally fine. Stellar, actually,” I say.
The nurse looks skeptical, then leaves.
Mark comes to relieve my shift midway through the night, but I stay, unable to leave Mal.
9/15/17—Diane
MIRACLE—Mal got the ventilator out and is breathing on her own!! There aren’t words to describe the moment you see your baby girl breathing with new lungs.
9/16/17—Jack
Now that Mal is off the ventilator, new sensations began to dominate her attention.
The first is thirst.
She is not allowed to drink but can suck on small sponges soaked in water. Swallowing is still too dangerous as she has a feeding tube inserted. It’s much smaller than the vent tube, but aggravating to her throat, which is still tender. Though her hydration levels remain perfect, the sensation persists.
Finally, she has had enough.
Instead of asking for another soaked sponge, she asks me to come close. Talking is still challenging with such a tired throat, so all she can manage is a whisper.
“No. More. Sponges…Need. Drink. From. Bottle.”
I tell her that’s not allowed, that it’s too dangerous. She grabs my medical gown with all her strength and pulls on me. Her eyes look manic.
“NEED IT. PLEASE,” she whispers angrily.
I tell her that she will be okay, that we will get through this together. Mal glares at me, releases my gown, and slumps back into her bed, defeated.
9/17/17—Diane
Mallory’s pain is unbearable, which tempers the joy we’re all feeling now that she has new lungs.
9/17/17—Jack
More pain and discomfort continue despite Mal’s progress.
It gets worse and worse through the day.
“Why did I do this?” Mal asks, out of the blue.
“What do you mean?” I say, confused.
“Why did I agree to a transplant?” she asks.
“Well, let’s remember why,” I say. “You had hours of treatment every day, treating but not curing a sickness that was only getting worse month to month, which was slowly but surely taking away your ability to live a happy and normal life with your family and friends. We knew a transplant would be hard—we knew it would be painful. But we also knew that the pain would be primarily condensed into your recovery period, resulting in the reward of a longer, healthier, more fulfilling life. Does that still sound like a good trade?”
I wait for her to think about it as she stares vacantly into the distance.
I feel thankful for a lot of things. Pride, joy, and exhaustion best describe the week.
But transplant inflicts trauma. Mal has endured so much. Good thing she won’t remember most of it…or so they tell us.
9/19/17—Diane
UPMC transplant team continues to amaze…Two issues Mal was dealing with—vocal cord paralysis from intubation during surgery and a feeding tube that was stuck in the wrong place—have been resolved. Each molehill feels like a mountain until Drs. D’Cunha and Pilewski (and their stellar colleagues) work their magic. While pain is still unbearable for Mal, she continues to surpass everyone’s expectations in terms of milestones. Today’s victory—Mallory walked!!
9/21/17—Diane
Mal had her first hair wash in ten days, thank you, Eileen! HUGE smile, followed by tears when she realized her vocal cords still aren’t working properly. Feeding tube can’t come out until she can swallow, so she is now working with speech pathology and ENT.*4 Also acute and chronic pain teams are trying to find a regimen that will work. Today’s activities include walking, swallowing, and breathing exercises. I have to take mandatory training to learn about post-transplant care.
9/22/17—Diane
Yesterday started with the expectation that things would continue to improve, but it turned out to be a very difficult day. When Mal felt she was at the breaking point, I reminded her that she has tremendous inner strength, a strong will to survive, and more love/support than she could possibly imagine. And to keep looking at the photograph of her diseased lungs to remember why she agreed to this traumatic surgery.
9/23/17—Diane
Today was GREAT! We heard blood cultures were clear (after they hadn’t been), that her vocal cords are closing as they should, that Mal’s walk was 175 feet!! We watched her blow 1,000 on her incentive spirometer (first days she couldn’t hit 250) and her pneumothorax is improving.
9/24/17—Diane
Mal is still dealing with vocal cord paralysis and a chest tube still culturing positive for cepacia. The feeding tube and chest tube, which continue to cause major pain, should come out soon. The good news is Mal more than doubled her step count today—she walked a half mile!!
9/25/17—Diane
Today was all about swallowing. Mal continues to improve but can’t get her feeding tube out until she can eat and drink. They say practice makes perfect….
9/26/17—Diane
Each day brings new milestones—today Mal’s feeding tube was removed and she walked stairs. Marveling at the MIRACLE!
9/27/17—Diane
Sixteen days after Mal’s transplant, they are preparing for discharge (will take a day or two to get the home meds set up). Exciting but also terrifying as Mal still has a “swallowing disorder”—temporary, we hope—and is immunosuppressed, still with chest tubes, still in pain. They can’t do a bronchoscopy to check for rejection because they don’t want to risk stirring up cepacia. Continue to think it’s a miracle or a dream that I don’t ever want to wake up from.
9/28/17—Diane
Final chest tube clean-out, final PICC dressing change, and final instructions. Vi
tals and clinical assessment are good so Mal is cleared for discharge!! Still a long road to recovery—and a whole new set of meds—but getting out of the hospital is a major milestone. Used to sing “Somewhere over the rainbow there are lungs, and the dreams that we dare to dream we hope do come true.” Now we sing “…over the rainbow, there WERE lungs.” Mal, our dream came true.
10/2/17—Diane
Still so much pain but every day seems to be a little better. Mallory still does not have much of a voice yet and swallowing is still an issue. Hosted a dinner tonight for her friends in the lobby, which got her up and out of the apartment. Tomorrow we head to the hospital at 6:30 a.m. for post-transplant tests. Crossing our fingers that the last two chest tubes come out as that will help with the pain. Mal washed her own hair for the first time today. When she was changing her clothes she noticed her chest was much smaller and asked if I thought they had cut out some ribs. Hadn’t heard that they did but wondering if her discarded/diseased lungs were swollen and infected, making them enlarged. One more question for the team tomorrow…
10/6/17—Diane
This week’s activities for Mal included transplant clinic, blood transfusion, magnesium, potassium and antibiotic IVs, physical therapy, CT scan, X-rays, dressing change, and blood draws. Still lots of pain from the last two chest tubes but we continue to hope for improvement. They say all of this is part of routine recovery and she’s doing well given that she’s twenty-six days post-op, twenty-four if you count from date of chest closing.
10/7/17
I haven’t written anything since my transplant on September 11. Typing with errors because I’m wearing a pulse ox.*5
Want to remember getting the real call, Gaby coming in, sitting in the hospital for twelve hours. I told my mom while we were waiting that if this wasn’t the time, that I would need a break. She looked at me with conviction and said it WILL happen and you WILL get through it. I wasn’t serious, of course, but it was reassuring to see her so confident.
Night of surgery
Saying goodbye to Maria on the phone, crying. UPMC cameras recording everything so that they can share my story.
Salt in My Soul Page 26