Heading into O.R., extreme anxiety. Not knowing if I would come out alive.
Will continue later, too tired to cover so much at one time.
Pillboxes are crazy hard. Need to update the list:
POST-TRANSPLANT PILLBOXES
1. Domperidone QID
2. Calcite 900 mg BID
3. Misoprostol 200 mcg QID
4. Prednisone 15 mg QD
5. Bupropion HCL XL 150 mg QD
6. Ursodiol 250 mg or 300 mg BID
7. Voriconazole 200 mg BID
8. Bactrim (sulfamethoxazole) DS 1 tab TID
9. Biotin 1000 mcg QD PM
10. Prograf (tacrolimus) 4.5 mg BID
11. Levaquin 750 mg QD
12. Colace 250 mg BID
13. Simethicone 180 mg QID
14. Dexilant 60 mg BID
15. Mestinon (pyridostigmine) 60 mg TID
16. Minocycline 100 mg BID
17. Aquadeks 1 tab BID
18. Famotidine 40 mg QD PM
19. Melatonin 3 mg QD PM
20. Amitiza 24 mcg BID
21. Lopressor (metoprolol tartrate) 50 mg BID
22. Coenzyme Q10 100 mg TID
23. Senna 2 tabs BID
24. Gabapentin 300 mg QD PM
25. Dulcolax 10 mg QD PM
NOON
1. Domperidone
2. misoprostol
3. simethicone
4. Mestinon
5. Bactrim
6. magnesium 2 tabs
EVENING
1. Domperidone
2. misoprostol
3. simethicone
4. CoQ10
5. magnesium 1 tab
10/9/17—Diane
Mallory taped two TV segments today—ABC and CBS—about her journey. The simple act of cleaning up is a major milestone after you’ve been so sick that washing your face is a huge effort!! Each day seems to bring improvement, so clinging to the idea that slow and steady wins the race.
10/15/17
On my twenty-fourth birthday in 2016, I got the phone call from UPMC that they would accept me into their lung transplant program when I became sick enough to need one.
One month and one day after transplant surgery, I celebrated my twenty-fifth birthday with Pittsburgh friends and then spent the rest of my birthday weekend with Jack. But the recovery from this surgery has been more harrowing and more painful than anything I’ve ever experienced before, and it’s a good thing I don’t remember the worst of it. What I do know is that I had angelic family and friends who stayed by my side when I was on the vent, disoriented, in pain, and panicking, who reminded me why I chose to put myself through this: for the hope of a better life.
I never knew if I would live to see the other side of transplant, if any program would take a chance on me, but UPMC doctors did, and here I am. This year, instead of wishing for something else, I just sent my deepest gratitude to my donor, whose selfless choice to donate organs gave me the chance at a new life. My primary aim will be to make him/her proud.
10/20/17—Diane
Five weeks and five days after Mal’s transplant they removed the final two drains and took out the remaining staples from the surgical site. Immediately after Mal said, “Today is the best day of my life!”
10/25/17—Diane
Oh what a difference a day makes. A day after being out with friends, we are in the ER with Mal about to get admitted. Double-lung transplant is not easy to recover from, so we’re hoping it’s just a bump in the road but Mal is still struggling with pain, nausea, loss of appetite, fever, speech, and swallowing issues. Just had CT, which revealed possible pneumonia; next will be a bronch to look for rejection.
10/27/17
Need to remember to write about these things:
Chest open, ventilator, million lines. ICU, writing notes, banging phone on bed—when the ICU kicked my dad out for shift change and I was terrified. Called my mom but couldn’t talk because of the vent so I banged the phone on the bed rail to communicate my distress. She put Jack on the phone and he calmed me down until my mom could track down my dad and he came back. Subsequent fight with hospital personnel about insane rule of kicking families out of ICU during shift change, the time nurses are least able to be responsive because they are distracted giving reports to the next shift.
Indignities in ICU. Chest closing, starting to be lucid. Moving to second ICU room, then to transplant floor (7?). Blood infection, infected pleural fluid, infected port.
Extreme thirst. Fear, anxiety, panic attacks, worst pain of my life, wishing I were not alive for parts of it.
First time sitting in a chair. First walk. Difficulty of getting to the bathroom with four chest-tube receptacles and IV pole and me unable to walk or lower/lift myself onto/off the toilet.
Stacy visiting, then Eileen and Don, Natalie, Danielle, Maya. Kyle and Dave coming soon. Increasing step count each day. Being fed through nasal tube. Surgery on my vocal cords to plump them up so they can close, but failure. Thickened liquid diet with the threat of aspiration if I drink thin liquids.
Writing notes. Amazing doctors—Pilewski, D’Cunha, Kates,*6 Harano,*7 PA Marissa, many more. Great nurses.
Going home. OVERWHELMED. Wasn’t ready at all, crazy pill organization with lots of help from my dad and Barb. Crying to Maya about how this was the hardest thing I had ever experienced, sleeping through most of her visit. Birthday and birthday dinner. Chest tubes staying in FOREVER. No showers. Scary weight loss, down to 110 (BMI less than 15). Forgot to write before, Sabrina’s visit in ICU but too drugged to remember.
Pain management issues, nerve block solution for a while. How opioid epidemic is making it harder for legit patients to get what they need.
Strange reality of me feeling closer to Jack post-transplant because of how amazing he was, and him feeling more distant cuz I couldn’t talk on FaceTime/phone as much cuz of fatigue/my voice being weak/being overwhelmed/having visitors.
Physical therapy and walking, speech not improving. Hope for 2018—travel, lots of time with friends and family, being healthy and hospital free, and writing my book!
Lots of visitors—Talia and Ronit, Becca and her mom Nancy, Ali and her parents, Nancy and Alan. Running around, lots of activity, fancy nice dinners to try to fatten me up, Ralph and Mary hosting us for cocktails, then fever on 10/25 and trip to ER and admission. Current insomnia. Tomorrow thoracentesis to culture and possibly drain the pleural fluid and make sure there isn’t an empyema.*8 Then later on a bronch with biopsy to check for rejection/culture any infection that’s there?
10/28/17—Diane
After having a good day yesterday, Mal spiked a high fever late last night, the hallmark of cepacia syndrome and cause for great concern. Drs. Pilewski and D’Cunha explained the challenges they face treating both infection and rejection.
Anyone who knows Mal knows she’s got more inner strength than most, but it’s hard not to be scared. On a happier note, Jack came today. If only love could heal…
10/29/17—Diane
The highs and lows of this weekend are indescribable. Simplest explanation for what’s happening is that Mal has a worsening pneumonia, not surprising given the cepacia that’s still hovering and the immunosuppressants needed to keep rejection at bay. Treating for both is proving to be impossible. We check Mal’s temperature multiple times a day as she can go from a high fever that leaves her listless and in pain, to seemingly fine within the span of hours. There’s reason to be hopeful as Mallory’s O2, BP, and HR are good.
10/31/17—Diane
Mallory is facing post-transplant pneumonia with tremendous courage as cepacia continues to wreak havoc on her fragile body
. UPMC is using every weapon in its arsenal to attack the moving target of symptoms. Feeding tube is back in, antibiotics are layered on, and ancillary service providers come to help with PT, swallowing, and walking. Pulmonary, Transplant, and Infectious Disease docs confer and round daily as Mal’s case is “complicated.” Cepacia is so resistant and virulent that no one is talking about rejection. The silence is deafening.
It’s been an exhausting week for Mal as she struggles to recover. The days blur together with mornings incredibly difficult and afternoons much better. Many medical minds worked together to devise a cocktail of drugs that will keep the cepacia at bay. Morning vitals were cause for great concern.
11/3/17—Mark
I found an online article about Tom Patterson’s case, the first case of successful phage therapy in the United States. I reached out to his wife, Steffanie Strathdee, Ph.D. an epidemiologist, and the one responsible for wrangling phages for Tom. After I explained Mallory’s situation, that her B. cepacia was rearing up again and would likely kill her if we couldn’t get it under control, Steffanie agreed to help.
She reached out to her network of phage researchers, those who had helped her save Tom’s life, and soon we were in communication with them.
11/7/17—Diane
Mal isn’t getting better. Since there is no hope left from traditional, approved medicine, Mark asked Mal’s doctor if he would help us pursue phage therapy. Dr. Pilewski said, “YES, but if we’re going to do this, we need to do it now, as we’re out of time.” We are now working with UPMC, Adaptive Phage Therapeutics, the U.S. Naval Medical Research Center, Texas A&M, UC San Diego, AmpliPhi Biosciences, the University of Michigan, and the University of Alberta to find an appropriate phage treatment.
11/9/17—Diane
One week ago we had NO options left to treat Mal’s pneumonia since her cepacia is resistant to every single antibiotic on the market—the same cepacia that was in her old lungs is back in her new, pristine lungs. But now we have hope as Mark is working with the doctors to get phage therapy for Mal. If I wasn’t a witness to what transpired this week between so many doctors at so many institutions, I would never believe it could happen. Isolates have been sent to various labs and phages are being tested in different parts of the country and Canada. While not a sure thing, it’s the single most promising treatment we can try to get.
Mark also found a drug made by the Japanese pharmaceutical firm Shinogi (not yet approved in the United States) that might be active against cepacia. We brought it to the attention of our team at UPMC, who told us they’d been actively trying to secure it but there wasn’t inventory. Danny knows someone at the company so he is putting us in touch. But UPMC said we didn’t need to activate this connection, as they had just secured a full treatment course for Mallory!!
In the span of five days we went from feeling hopeless to hopeful. It’s been a totally overwhelming week with an endless cycle of multiple teams rounding, IVs, RT treatments, PT, swallowing therapy, procedures, and showering (a BIG deal). One of the hardest parts is getting those darn compression stockings on. Such a relief that Linda is here and took on that job!! I am so grateful she is here!!
11/10/17—Diane
Things took a turn, Mal is much worse, we’re in final throes. Dr. Pilewski will do what it takes to keep things going. Starting the new drug today (Herculean efforts were taken to make this happen) and hoping it will work or act as a bridge until they find phages. At Dr. Pilewski’s urging, we are asking family and friends to fly in.
11/10/17—Jack
Today is my birthday.
I wake up with a jolt to the sound of my alarm.
A single notification is displayed on my phone, showing that Diane had called me not even five minutes before and left a voicemail.
I shoot up in bed, fearful that something bad has happened.
I hit the voicemail playback button and Diane’s voice fills the room.
“Jack…if you’re going to come, come now…(click).”
Fearing the worst, I call her right back. It’s time.
On the way to the airport, Mal checks in with a text. “Good morning!! I hope today is wonderful and that this birthday is the start of an amazing year. And I hate to put a damper on the day but I’m getting moved to the Intensive Care Unit.” She ends the text with a sad-faced emoji. Even as she was struggling for her life, she was thinking about others. Quintessential Mallory.
When I ask Diane why the urgency to come, she explains that Mal is at the end and it is time to call anyone who needs to be there. By 8:00, I’m in the room, along with thirty others who have flown in to be with Mallory.
11/11/17—Jack
Things are scary, as Mallory isn’t turning around. Diane arranges for all of us to stand outside Mallory’s ICU room and take a picture smiling. Intubated and drugged up, Mal scribbles: “Can’t talk at all (sad face) but so grateful that you are all here for the hardest part.” She smiles, so remarkable in light of what is happening. She is writing notes to everyone, thanking them for visiting. At one point, she gets tired and tugs on my sleeve, pointing to the paper and motioning for a pen: First she writes, “Can we be alone.” I squeeze her hand and indicate yes. Then I ask the others to give us a moment. She continues writing: “Is everyone here because they think I’m going to die?”
This is a hard question to respond to. I steady myself and answer as calmly as I can. “We knew this situation was risky, so everyone just wanted to be sure,” I say vaguely, knowing how stupid it sounds. But I am trying to follow Diane’s lead. Her mandate, in fact. She has very clearly and unequivocally instructed all of us to stay positive. She has chosen to ignore the advice the doctors have been giving for the past week, which is to let Mallory know she is dying. Diane feels strongly that since Mark is on a mission to get her phage therapy, there is still hope. And Mallory needs hope to hang in there.
Mallory looks into my eyes, searching for the truth. After a moment that seems to stretch far too long but in reality is only a slight pause, she shrugs her shoulders, tilts her head, and nods.
11/12/17—Diane
Things are spiraling out of control. I continue to insist that no one tell Mallory she is dying. Mark and I agree that we want her to take her last breath thinking she is going to sleep and will awaken when the phages have done their job. She is terrified of dying and my response as a mom is to try to take away her fear.
11/13/17—Diane
UPMC is working its magic to keep Mal stable. One of the labs in Maryland has confirmed that they have at least two active lytic phages that should be ready for delivery (expanded AND purified) by Thursday. Mark is in high gear coordinating additional phage preps to maximize Mal’s chances. Dr. Pilewski said she won’t make it to Thursday. Mark thinks we should have the phages delivered and administered in whatever state they are in. Mark called Dr. Robert (Chip) Schooley, the one guiding us through the phage therapy journey, to ask about stopping the growth/purification process and using whatever phage prep is now ready. Jack came up with the idea to split the not-fully-mature existing culture in two, so one could be ready to administer and the other would continue the growth/purification process.
Mark texted this new idea to Chip. Chip liked it, and passed it along to APT.
Mark and Danny talked to APT, who gave us an ETA of 4:00 p.m. Tuesday for the first phage preparation.
I sent urgent emails to Drs. Pilewski and D’Cunha asking if we could use the UPMC chopper since they use them for organ procurement. They said yes!!!!
11/14/17—Meryl Shader (Mallory’s aunt)
It’s the early morning shift and I’m sitting alone with Mallory, who rests fully sedated. It’s not clear what she absorbs in this state but Diane thinks, as do I, that she knows we are there, so I keep my hand on her leg and believe she feels the presence of family. When I remove my
hand to take photos of Mal’s vitals, I explain to Mallory that I just need my hand for a minute to use my cellphone, that her mother loves her so much, and she likes to see the machines’ readings.
I take photos every hour per Diane’s request and send them to her, so that she can know the status of Mallory’s O2, the most important number she’s tracking. Diane is trying to sleep in the apartment but hasn’t been able to during this critical time. I hope the good numbers enable her to doze until it’s time for the next set.
11/14/17—Diane
Just got word that the helicopter can’t fly in current weather so they’re sending Dr. Harano to Allegheny County Airport to fly by plane to Frederick Airport, the airport closest to APT’s lab. APT will be waiting to hand off the phages and then Dr. Harano will fly back to Allegheny and be met by an ambulance to deliver the phages. Dr. Abdel-Massih will be waiting at Mallory’s to prepare the phages for administration.
11/14/17—Meryl
With the phages on their way, everyone is whirling about in such a frenzy of excitement that I am terrified the excess energy will affect Mallory’s numbers. There has been a great deal of conversation about keeping Mal’s room a calm, meditative space because noise and excitement appear to cause her numbers to go crazy. So as everyone else bounds back and forth at her doorway, bringing status reports, racing off to watch the helicopter that is delivering the phages to the hospital roof, I stay in the chair by her bed, and hold her hand. My voice is steady as I deliver a very long monologue, reminding her of the beautiful days to come after the phages do their work. And I try to describe a medical process I barely understand. People come in and out. I feel like a drill sergeant, reminding them to keep their voices low. “The phages are coming,” I say, we all say. “The phages are coming, Mal. They’re almost here.”
11/14/17—Diane
We need a miracle.
5:10 p.m.—Dr. Harano is on the plane with phages in hand. Turns out he will be met by a helicopter to bring the phages to the hospital by 6:00 p.m. The plan is to deliver them into the trachea. Everyone in the ICU is on standby….Dr. D’Cunha was instrumental in securing transport, Dr. Pilewski will deliver the phages through a bronch. My new favorite quote: Some superheroes wear capes, others wear stethoscopes!!
Salt in My Soul Page 27