Welcome friends and family!
It has been a bumpy ride, but God has given me strength, love, friendship, and, FINALLY, health. My prayers have been answered, my miracle was granted, and I want to share the joy of my new life with you.
My entries begin in April of 2008 and my double lung transplant was December 10. Scroll down to my blog archive and you can read from the beginning or jump around. If you are looking for a specific topic, you can use the search engine.
I hope I can help you to experience the love God has for each and every one of us!
May God Bless You with Miracles in Your Life! Nancy
Friday, February 26, 2010
I settled down to finish my Bible study homework for this week only to receive a phone call that Bible study was cancelled due to the weather, bummer, I really could have used that time with God and a supportive group of girlfriends.
So, I decided to head to the computer to check my accounts.
There was a message there from Dr. Pilewski. My bronch results are in and my lungs are in mild rejection and I have another infection of Pseudomonas. All it took was that word rejection and I burst into tears. Yesterday I cried myself out, so I really didn't need another emotional breakdown. But certainly, for any transplant patient, the word rejection is terrifying. So I certainly felt justified for my tears.
I am not sure what comes next, but it sounds like more antibiotics, an added anti-rejection drug, an increase in prednisone, and lots of prayers.
Wow, what would I do if I couldn't look to God knowing he is my rock, no, my mountain. Though I am emotionally spent, I know FOR A FACT, God will take care of me. I am doing all that I can, everything else is in His hands. Boy, what do I ever have to be afraid of?
Please lift me up in your prayers this week, as I know you already do. I can't think of a better group of people to ask.
God bless you all today and always! Love you! Nancy
Thursday, February 25, 2010
I made an incredibly stupid mistake today, I responded to an e-mail that I thought was from Yahoo's Customer Support Center, only to find out that it was a phishing e-mail that captured my log-in information. They attacked my e-mail account and sent out the following message to all of my contacts:
From: Nancy Matthews
Sent: Thu, February 25, 2010 12:21:29 PM
Subject: Very urgent please
Hello, Sorry for not telling you about my emergency trip to London. Here is what happened to me, i am stranded and without a phone at the moment. I was defrauded of all my personal belonging and also robbed by the same gang of fraudsters here.Am at the airport right now mailing from an internet center with the only money i have left and i only have 30 minutes. At the moment i need $1970 to cover some expenses and to get back my passport from the hotel i booked,i have to pay move out and the manager has my passport because i told him to give me some time to arrange some money so i can clear my bills to enable me return home. Please, can you loan me this money and I will pay back immediately I return home if you can, please let me know. Hoping for your positive response.Best regards,
Nancy A. Matthews, MSEd
Author of: A Journey Toward Spiritual Peace
An Insider's Guide to Managing Your Chronic or Terminal Illness
As you can imagine, my phone started ringing off the hook with people worried about me and letting me know about this scam. I couldn't get into my e-mail account, so I started praying. I had to cancel all of my on-line accounts, change passwords, create a new e-mail, etc. But I just kept praying for God to send me a way to stop this.
When Hannah came home from school, she had the spam message on her computer, so I took a chance and responded to it. Here is what I wrote:
From: Hannah Matthews
Subject: Re: Very urgent please
To: "Nancy Matthews" firstname.lastname@example.org
Date: Thursday, February 25, 2010, 3:55 PM
This is the REAL Nancy Matthews. I am writing to ask you to please stop using my account to harass my friends. You have no idea the amount of distress you have caused me today.
I am not sure why you have chosen to do this, but I am praying for you. I forgive you for using me this way, please look to the Lord for guidance in how to proceed. May you realize the evil that is causing you to do this and ask God for forgiveness.
With prayers and forgiveness, Nancy
Surprisingly, I received 2 responses, the first was:
The second was:
Subject: God is able
From: Nancy Matthews To: Hannah Matthews
Baby,i really felt so bad the way i read your mail. You have acess to your email now. Thanks and try to log in with your real pass/
One love keep us togerther
Quite bizarre, but when I tried to get into my e-mail, I was able. Perhaps God touched their hearts, I can only hope.
I have changed my e-mail address and can now be reached at email@example.com .
Please pray that my scammers did learn a lesson and will think twice before they do this to anyone again!
All my love! Nancy
Thank you! Nancy
Wednesday, February 24, 2010
I went in for a normal bronch, so they decided not to use general anesthesia, but instead more of a conscious sedation without the use of a breathing tube. BIG MISTAKE! When they got in, they realized I needed to be ballooned again, so they started over, giving me general anesthesia, a breathing tube, and ballooned the area. I am still totally doped up, almost 24 hours later, so if none of this makes any sense, I apologize.
My Pulmonary Function scores were also lower, which is of concern to me, but hopefully that is due to an infection, not a lung decline. I will keep you posted.
Please say some extra prayers for me and my lungs, we might need them. I will let you know when I get the results of the bronch.
All my love! Nancy
Tuesday, February 16, 2010
I am so sorry if it makes you cry, I sit here sobbing, but it does such a great job of showing the two sides of transplant. Both sides, worried about the other, mourning a loss, yet realizing the gift that has been given.
I know the sadness I feel when I think of my donor and her family. I have yet to hear from them, but pray that some day I will get to hug them, thank them, and show them how much their daughter/mother/sister/wife did for me!
Ashley's gift: A liver for LuLu
Organ donation » Two mothers and their daughters are forever linked by a 'wonderful, yet horrible' donation.
By Heather May The Salt Lake Tribune
Updated:02/12/2010 02:45:21 PM MST
"A lot of my emotions are tied up in thinking about that family and praying for that family. It's amazing in someone's darkest hour they can say, 'Take what you can from this person that we love and give life to [up to] eight other people.'" -- Liz Badger
Murray » Liz Badger is scouring every cupboard and drawer, tossing enough kitchen containers, blankets and clothes to fill at least a dozen bags for charity. This time, though, she's not nesting before bringing a baby home from the hospital. She's working off her anxiety about taking her dying daughter back there.
In a pink bedroom down the hall, 13-month-old London slumbers most of the day, in end-stage liver failure.
Affectionately called LuLu, the dark-haired, dark-eyed girl is one of the sickest children on the pediatric transplant waiting list in the Western United States. Without a new liver soon, her doctors fear, she won't make it.
Her family mostly stays home to avoid germs so she remains healthy enough for surgery. They watch movies. They play games.
They wait for someone else's child to die.
Liz's cell phone is always within reach. But part of her hopes it won't ring, not yet. LuLu is sick but stable. And in the silence there is solace: Another family has another day with their baby.
The phone is quiet for now, but not for much longer. The life of another dark-haired, dark-eyed girl is also fading.
'I love you, mom' » Nearly 200 miles away, Camie Lacey drives her daughter, Ashley Maynard, to her bus stop in a small eastern Utah town on Jan. 5. It isn't their routine, but it's too cold for her 12-year-old to walk. As the bus approaches, Ashley steps out of the car and says, "I love you, mom."
Camie sees her wait for one car to drive by. Realizing Ashley doesn't see the next one, Camie calls out her name and watches Ashley turn toward her. The car strikes Ashley, and she rolls onto the hood, then falls to the street.
Camie knows there is little hope when she gently pushes up Ashley's eyelids in the Vernal emergency room: The sparkle is gone.
In the coming days, Camie will pray for her firstborn to let go.
Time running out » At 2 months old, doctors diagnosed LuLu with Alpha-1 Antitrypsin Deficiency. The rare genetic disorder traps a protein in her liver, causing scars and preventing it from controlling infections, filtering toxins and processing food. As she grew, LuLu didn't have the fat, dimpled fists of a healthy baby. Every protruding vertebra in her back was a reminder of the food she couldn't eat. The disease made her nauseated and prevented her from digesting the nutrients she eventually had to take through a tube. Yet her belly was swollen. High blood pressure in the veins leading to her liver caused fluids to leak into her abdomen, which had to be drained by a needle. Before her first birthday, it was clear she needed a liver transplant.
Liz and her husband James, both 28, were determined one of them would give their daughter life for a second time. In theory, a surgeon could remove a portion of one of their livers for LuLu.
"I want us to have matching scars," Liz wrote in November on a blog chronicling LuLu's illness. "I want her to be able to look at me whenever she feels self-conscious and see how proud I am of my scar."
But both parents were ruled out, and doctors at Primary Children's Medical Center in Salt Lake City put LuLu on the waiting list for a deceased organ donor. When her kidneys started to fail in December, she advanced to the top.
Liz learned LuLu's ideal match would come from a child. That kept her up at night. Will he or she have been ill for months? Or will the death be unexpected?
"I will be sick for that mom that wants to die because her baby is no longer in her arms," Liz wrote at about 2 a.m. in late December during LuLu's third extended hospital stay for an infection and care that had her kidneys working again.
"I would want to die, too. And that is why I feel heartbroken tonight and every night as I lay thinking about this wonderful yet horrible process of organ donation."
Letting go » At LuLu's weekly appointment on Jan. 8, Liz sings the Bob Marley song "Three Little Birds." LuLu likes to shake her belly up and down to the words: "Don't worry about a thing, 'cause every little thing gonna be all right." Today, Liz wants to calm LuLu, who has just thrown up, and convince herself that the lyrics are true.
Linda Book, Primary's medical director of liver transplantation, tells her and James, "I know you're anxious to get this finished and get her well."
Liz struggles to agree. "We are," she says, thinking of where the liver will come from, "but it's a strange spot to be in."
Just down the hall, unknown to Liz and James, Ashley lies still in the pediatric intensive care unit. The sister of 7-year-old Samantha, 5-year-old Abigail and 13-year-old stepsister Danyeal, Ashley is in sixth grade at Vernal Middle School. She is the type to comfort a crying classmate at lunch and to correct her Sunday school teacher's grammar.
She dreams of becoming a veterinarian. As a younger child, she toted around a toy bat dressed in doll clothes, trotted through the house pretending to be a horse and made nests in the backyard.
The crash fractured her skull and stopped her heart. Emergency room physician Aaron Bradbury was just ending his shift at Ashley Valley Medical Center, where severe trauma cases are unusual. Hearing an ambulance was on its way carrying Ashley, he stayed to help.
Several of the staff resuscitating Ashley knew her. When they found a pulse -- she may have gone up to 20 minutes without one -- Bradbury felt something like regret.
"I knew what was going to be in store for the family," he said later. "She might die in the ICU or she could persist in a vegetative state for years."
Ashley was flown to Primary Children's, where doctors left her in a medically induced coma, controlled her temperature and increased her blood pressure to move blood through her brain.
But days later, her brain is still swollen.
Camie, 35, already knows it's time to let go. She's been looking in Ashley's eyes every day and can't find her daughter. "The best part of Ashley was her heart, her soul, and then her brain, her intelligence," Camie says later. "I knew she wasn't going to come back."
'The most difficult thing to do' » Refusing to let Ashley become an organ donor, Camie felt, would be like killing another child. She asks doctors for reassurance that the drugs keeping Ashley paralyzed and sedated aren't ruining her organs.
Camie has a choice: If she turns off the ventilator and Ashley's heart stops quickly, she could likely donate her liver and kidneys. But if she survives longer than an hour, low blood pressure and oxygen would damage her organs.
If Camie waits and Ashley's brain stops first, doctors can keep her on life support and more lives can be saved.
Camie, a member of the Church of Christ, starts to pray for Ashley's brain to stop. She also hopes families awaiting a call don't feel guilty. "It's got to be the most difficult thing to do - wait for another child to die," Camie says later. "I can't imagine the feeling."
To better assess Ashley, doctors stop administering the drugs sedating her, and she begins showing primitive responses, blinking and coughing. Camie runs into her room and kisses her, asking, Are you going to be my miracle baby? She is so close she can taste a salty tear from Ashley's eye. Ashley's father, stepfather, aunts and uncles gather at her bedside. She isn't awake. But for the first time, Camie feels Ashley is there, spiritually, to hear them say goodbye.
After her last visitor leaves in the morning, Ashley stops responding. The swelling has forced her brain stem into her spinal column.
She is pronounced dead around noon on Jan. 13. On a ventilator, her heart continues to beat.
Ashley will give her heart, pancreas, kidneys and liver. Camie can't part with her eyes.
She lays in bed with her daughter. She bathes her and combs her hair.
'Can you say a little prayer?' » At 3 the next morning, Gina Wiser's pager wakes her up.
A transplant coordinator at Primary Children's, she confirms the liver offered to LuLu is a good match, then dials Liz.
Liz cries, thinking of the donor's family. Wiser consoles her, sharing how tissue donation helped her own family cope with the death of her 14-year-old brother, Zachary. "This is a good thing," Wiser tells her.
Behind the scenes, the symphony of donation is playing out. Intermountain Donor Services must find a home for the donor's organs, and the transplant surgeons must be in the room at the same time to remove them.
As LuLu's family waits more than 30 hours in the hospital, they hold and play with her as much as they can. She sits on a mat on the floor as James and Liz blow bubbles into her startled face.
When surgery finally starts, at noon on Jan. 15, LuLu's 3-year-old brother, Jonah, her parents and grandparents say good-bye. "LuLu's about to get a liver. Can you say a little prayer in your heart?" Liz asks Jonah as she touches his chest. Jonah folds his arms and bows his head.
The surgery lasts for about 10 hours. Chief pediatric surgeon Rebecka Meyers works on disconnecting LuLu's bumpy, scarred liver. At the same time, Willem Van der Werf, Primary's surgical director for liver transplants, is removing organs from the donor. Once he divides the liver for LuLu and a baby in California, Van der Werf walks the soft, pink left lobe to LuLu, whose room is next door.
"You just want her to move without being connected to anything," James says of his post-surgery hopes. "I want her to be able to wrestle with Jonah. [Go] on a simple walk."
At midnight in the ICU, Liz places a gloved hand over LuLu's already-shrunken abdomen and on top of her new liver. She quietly says a prayer of thanks to her daughter's "donor angel."
Caressing LuLu's head, she says: "You did it. You got a new liver."
'She's dying a hero' » Officially, Liz and James only know LuLu received the left segment of a liver. But they're convinced they've seen their angel.
On the morning of LuLu's surgery, Liz received an e-mail from her sister urging her to read a story in The Salt Lake Tribune.
Liz stares at Ashley's quiet smile and reads about her family's decision. "I always had a feeling in my heart that my little girl would one day become a hero," William Antico, Ashley's father, told the newspaper. "She's dying a hero."
Organ donation is anonymous to allow families to give and accept freely, without the pressure of knowing each other, says Karen Hannahs, a family liaison for Intermountain Donor Services.
To protect families from difficult emotions that can accompany donation, Hannahs advises them against meeting for at least six months. But Liz and James feel compelled to go to Ashley's funeral to pay their respects. They need to know about the girl who saved LuLu's life.
Three days after LuLu's surgery, they leave her in intensive care to drive 170 miles east through the night and snow to Vernal. They arrive early to the viewing, offered by the LDS Church to be held at a stake center, and are alone with Ashley, in her white casket with images of horses, for a half hour. Liz gently strokes her cheek, holds her hand and touches her where her liver was. Thank you, Liz says, I am sorry you had to die.
An LDS bishop comes in and, seeing Liz and James' tears, asks how they know Ashley. The couple, also members of the church, hesitate. They hadn't planned to explain their connection to Ashley, wanting to keep the day's focus on her.
After the bishop asks for a third time, Liz whispers, "We believe Ashley was the donor for our baby."
In tears, the bishop embraces them, insisting Camie will want to know.
At peace » Driving to the stake center, Camie prays, wondering how she will make it through the day. When she walks into the room, she sees her answer: James and Liz are standing next to Ashley's coffin.
A relative eagerly tells Camie their little girl got Ashley's liver, and Camie instantly feels at peace. The two mothers hold each other and cry. Without knowing it, they had been praying for each other for days.
Invited to stay as the casket is closed, Liz and James listen as the family prays for the driver who hit Ashley and the people who received her organs. They watch as Camie kisses Ashley for the last time.
At the funeral, Camie guides them to sit among Ashley's relatives. "She's a piece of our family," Camie says of LuLu. "They always will be."
'You can be OK' » A week later on Jan. 26, Camie and Liz sit on a couch, holding hands at Primary Children's. Camie has been following LuLu's progress on Liz's blog and she and Ashley's stepfather, Len Lacey, want to meet her.
As the two couples talk for more than an hour, the mothers occasionally touch their matching letter-A pendants. Liz wants a picture of Ashley to sit next to photos of her children. She vows to Camie she will raise a daughter to make her proud; Ashley, she says, has set the bar.
"I wish more than anything she was alive," Liz says.
Camie comforts Liz. "You can be OK, because I'm OK," she says. "I've spent my whole life trying to get me and my family, my kids, to heaven, and I got one there."
Bradbury, Ashley's emergency room doctor, now says he is comforted she lived so that she could save five other people. Camie is proud that a boy in Canada has her heart; a baby girl in San Francisco has part of her liver; a Minnesota woman has one kidney while a Utah woman has the other, along with her pancreas.
Intermountain Donor Services confirms LuLu has Ashley's liver. There will always be a risk she could reject it, though the chances are highest in the next year. A lifetime of anti-rejection drugs will bring their own problems. But within days, LuLu will be home, rolling on her stomach, finally hungry, eating cereal and cupcakes and chocolate. She will jump higher in her bouncy swing and laugh louder. Liz will feel Ashley gave LuLu not only life, but some of her own zest to fully live it.
For now, holding LuLu in the hospital, Liz points to Camie and tells her baby, "You can say, 'Mama.' She gave you life, too."
Camie kisses LuLu's bandaged stomach, saying. "I love you, sweetheart."
In the room, she can feel Ashley again. The sparkle is back.
Note to readers:
In hopes of encouraging organ donation, Liz and James Badger allowed The Salt Lake Tribune to follow their daughter London and her wait for a liver. In January, by coincidence, the newspaper separately covered the decision of Ashley Maynard's family to donate her organs. As the two stories intertwined, both families agreed to The Tribune's continued reporting.
Donations kept anonymous to protect families
Families who receive organs are not told the donor's sex, age or home state to prevent them from tracking down a donor family through obituaries or online social media. Family members of donors are given more, but limited, information.
Utah recipients are encouraged to write thank-you letters, but are told to include only first names and general information about their lives. The letters are sent to Intermountain Donor Services, which checks to make sure donor families wish to receive them.
It is rare for families to meet. Intermountain underscores the gravity of sharing identities by requiring both families to sign forms holding Intermountain harmless against legal claims.
- Heather May
Thursday, February 11, 2010
The remarkable progress of VX-809 is a reminder of why it is so important to remove barriers that prevent people with CF from participating in clinical trials. Passing the “Improving Access to Clinical Trials Act of 2009” will allow people with CF who are on public benefits to participate in important research without losing their health coverage. We continue to work with Congressional supporters to chart the best path forward for the bill. There are two options to pass the bill:
Option #1: On its own
Non-controversial, bi-partisan and no-cost legislation like the clinical trials bill may be considered under special procedural rules. Thanks to your hard work, 110 members of the House, and eight members of the Senate have signed on as co-sponsors, meeting the requirements to provide the bill the opportunity to advance on its own.
Option #2: As part of a health care reform bill
Despite the shift away from health reform in past weeks, our sponsors – several of whom are key negotiators on health reform – continue to consider it as an option and the best opportunity to move the bill sooner rather than later.
Read more about what H.R. 2866 would do.
The bill has two viable opportunities because you made it clear to your members of Congress that this is a priority for you and should be for them as well. Ask your members of Congress to keep the "Improving Access to Clinical Trials Act" on their agenda until it passes.
Right now, because of eligibility rules regarding compensation for clinical trial participation, many people with CF are forced to choose between taking part in important clinical trials and keeping their health care coverage.To help promising drugs move swiftly from the research and testing phase to the people who need them, more people with cystic fibrosis are needed to participate in clinical trials. This important legislation will remove that barrier to allow more people to do so.
Vertex Pharmaceuticals Incorporated announced today results from a Phase 2a trial of VX-809, an oral investigational drug that aims to correct the basic defect in cystic fibrosis. VX-809 was found to be well-tolerated and to reduce sweat chloride levels — a key indicator of CF.
The 28-day, Phase 2a trial of VX-809 examined the drug in cystic fibrosis patients who have the Delta F508 gene mutation, the most common mutation in CF. The study focused primarily on the safety and tolerability of the drug and changes in sweat chloride.
A reduction in sweat chloride levels in the Phase 2a data suggests that VX-809 may improve the function of CFTR, the faulty protein in CF.“These are very exciting and important results in our effort to find ways to treat the basic defect in cystic fibrosis,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “The VX-809 data further supports our hypothesis that small molecules can be used to treat the underlying genetic cause of cystic fibrosis.”
The data from this trial pave the way for future studies of VX-809, including testing the therapy in combination with VX-770. Also developed by Vertex, VX-770 is an oral investigational drug that showed encouraging Phase 2 results in restoring the function of CFTR in patients with the G551D mutation of CF.
Research in the laboratory suggests that using two therapies in combination may increase CFTR function in cells with the Delta F508 mutation when compared to using a single therapy alone.
The first trial examining VX-809 and VX-770 in combination in cystic fibrosis patients is currently in the planning phases, and is expected to begin in the United States in the second half of 2010.
In addition, Vertex is further reviewing the Phase 2a data and may explore the option of studying VX-809 as a single drug in higher doses in a separate clinical trial.
Through its Therapeutics Development Program, the CF Foundation collaborated with Vertex to discover and develop VX-809 and VX-770, investing approximately $76 million in the effort. This represents the largest single investment in CF drug discovery by the Foundation.
Wednesday, February 10, 2010
Today is a snowday for Hannah. She is trying to figure out what friend she might be able to have over and I am sure she will make some great memories of her own. Childhood is such a wonderful time!
It looks like a winter wonderland outside. It makes you feel so cozy. What a great day to sit by the fire and read a good book! I think we all need snow days. A day to relax and rest, to forget all of our obligations and just watch the snow fall down.
Make sure to take a snow day soon, it is a great way to rejuvinate!
All my love! Nancy
Thursday, February 4, 2010
I wanted to recommend an amazing book to all of you. It is called Left to Tell, Discovering God Amidst the Rwandan Holocaust and was written by Immaculee Ilibagiza.
I was given this book last year by a dear friend, and finally got to read it last month. I am still in awe of all that this woman went through. Her faith is so inspiring and will bring you to tears. If you have ever doubted the existence of God, you really must read this book, you will never doubt again.
For those of you unfamiliar with the Rwandan Holocaust, it occurred in 1994 and more than one million people were murdered in roughly 100 days. They were killed because of they belonged to the Tutsi tribe and were murdered by friends and neighbors. No one was spared, not babies, women, children, or elderly.
The most amazing theme that came out of this book for me was one of forgiveness. Can you imagine having your family killed, yet praying for and forgiving their murderers? Forgiveness can be a difficult concept, yet God tells us to forgive each other. Immaculee is a shining example of following God's word and living in a Christ-like way.
I would encourage you to get this book and read it. It will change the way you think and reinforce your faith in God.
With love and prayers, Nancy
Monday, February 1, 2010
Hannah participated in Solo Fest over the weekend. This was her first opportunity to play her flute alone and get assessed for it. As you can imagine, she was very nervous, but she went in and did her best and we were so proud of her! We are not sure how she did, she will get the results tomorrow in band, but as we told her, it doesn't matter what her score is, she is a winner for just going in and participating. This was an optional event, students chose to participate.
It is so amazing to watch our children spread their wings and try new things. The sense of accomplishment she felt was written all over her face as she left the competition room. It makes me proud to be her mother!
Was it worth it? She meant the cost. Was all the money we have and will spend worth it? I hope you all know what my answer was, YES!!!! How can you put a price on a life? What is too much to spend to get your health back? I can certainly say I wouldn't want my family to be destitute because of my transplant, but to have to cut back and live more frugally, we can definitely handle that.
Every penny we have paid out, every tear we have cried, all the pain I endured, it WAS WORTH IT! My life is a miracle. Every new thing I do today is thanks to the sacrifices we have made. Yes, I often wonder what it would be like had we not been burdened with my illness. We would certainly be more financially stable, but would we have the same depth of relationship? Would we appreciate the little things so much? In a lot of ways, we have benefited from the hardships and come out stronger, more in love, and genuinely grateful for every good moment.
So, yes, it was worth it. If you are struggling right now, have faith that what you are going through will change you and make you appreciate the good that is to come. Pray for God's help to get you through and trust that He will stand beside you. Never doubt that He has a plan and it will be good.
With all my love, Nancy