The Girl Who Cried "Transplant"

There once was a girl who lived in a small town.  This town was pretty boring, and most days were pretty uneventful.  This girl had been dealing with health problems for the majority of her life, including some major circulation problems as a result of the radiation treatments she had as a child.  She tried and tried to have them resolved in a non-invasive way, to no avail. 

Her vascular surgeon suggested that she have a major operation to correct this issue.  She would have an artificial graft put into her abdomen that would bypass her damaged aorta.  This was done in December 2009.  Two days after her surgery, her surgeon informed her that her kidneys had shut down and she would need to start dialysis.  He assured her that this happened on occasion, and often times the problem would resolve itself after a couple of weeks of dialysis treatments.  When she began treatments on December 25, 2009, she also was informed that she had Hepatitis B, which she would find out later causes some other complications.

After being released from the hospital in Phoenix, she began dialysis treatments in Phoenix three times a week.  These treatments made her very sick.  She ended up in the hospital several times over the next year or so...often times to deal with extreme dehydration and high blood pressure.  She even had a couple of seizures as a result of the extreme blood pressure.  (Her highest was 190/120.)  She lost 50 pounds, (something she needed to do anyway, but not THAT way!) and was very weak.  She was given several priesthood blessings, including one from her bishop that promised her that she would be restored to health.

After about six months of treatments, her nephrologist asked her if she wanted to be worked up for a kidney transplant.  She decided to proceed with the testing at Mayo Clinic and was approved to be a transplant candidate in July 2010.  Her brother and sister both offered to donate a kidney to her, and it was decided (by means of "Rock, Paper, Scissors") that her sister Michelle would get worked up first.

Meanwhile, the girl had been taking anti-viral medications to get rid of the Hepatitis B virus.  The medicine made her very sick, and she doubted that it was working at all.  It took five months, but the virus was finally undetectable and she was good to go for transplant.

Michelle came to Mayo Clinic and went through all kinds of testing.  The girl stayed with her sister the entire time, and was so grateful that she was willing to go through this for her.  Her sister was approved as a match, and the transplant was scheduled for November 19, 2010.  The girl went in to Mayo for her pre-surgery testing, which included a CT scan of her kidneys, as she had had kidney cancer in 2008, and they wanted to make sure she was cancer-free.  While her kidneys were deemed cancer-free, they discovered that her aorta and bypass graft were once again blocked, and would need to be repaired before the transplant could occur.

The girl was devastated.  She felt she had gone through the entire last year of dialysis and being so sick for nothing.  The surgery that started this whole thing was a failure.  The vascular surgeon at Mayo agreed to do a stent procedure on November 18, so that the transplant could occur as planned on November 19.

The stent procedure was successful, and she was in ICU recovering and making necessary preparations for the next day's surgery when she woke up with severe pains in her right leg.  The surgeon came in around 3:00 a.m. and took one look at the bottom of her feet (which were black and blue) and said that she had what is called "trash foot."  It turns out that all of the crud that was blocking my aorta came loose when the stent was placed, and it sent all of it--the plaque, clots, and other materials--down my leg and to my feet.  They would need to do emergency surgery to "roto-rooter" the artery in her leg.  The surgeon also told her that the transplant could not take place.  She called her husband, cried so hard, and told him to tell her sister that everything was off. 

She ended up staying in the hospital for several days while they monitored her circulation for any other blood clots.  They told her that the transplant would need to be postponed for at least three months to give her arteries time to heal and grow stronger.  Meanwhile, she was given Coumadin and Plavix to thin her blood and avoid any dangerous clots.

In February, she saw the surgeon again and was cleared for transplant.  The transplant was rescheduled, and plane tickets were bought.  When she went in for her pre-surgery tests (again) she was told that they would do another Hepatitis B check, just to be sure.  When she was called and told that her levels were higher than they'd ever been, she was confused.  She was under the impression that once the virus was undetectable, she was good.  She didn't realize that she'd need to be on these meds for the rest of her life.  So, the transplant was postponed yet again.

March, April, May and June came and went.  Surgery dates scheduled, hopes were high, only to be dashed time and time again.  She was beginning to wonder what she had done wrong, why she was being punished, and what she could do better.  Fast Sunday in June was a special day.  Her whole family, and a lot of friends fasted for her and that the transplant could finally take place.  She felt completely at peace, and felt confident that the surgery would take place on June 14.  This was also her final chance for the transplant if she wanted to return to teaching in August.  She went for her pre-surgery testing AGAIN and was so confident that all would be well.  When she was called on June 11 and told that her level was still at 10,000, she was--once again--devastated.

The liver specialist increased her dose again, and she was tested on July 12.  This time her count was at 1,300...a huge improvement, but not where it needs to be.  (It needs to be at zero.)  She feels so silly, and doesn't even know how to respond to her sister when she calls to tell her the bad news.  She's just numb.

She will get tested again on August 12, and is so hopeful that things will be good.  If the count went from 10,000 to 1,300 in one month, surely it can go down to zero in another month.  But, as one of her nurses told her, "Well, it is YOU!"  Who knows.

She is sure people are tired of hearing that the date is so close.  She is sure people just don't even know what to say anymore.  She feels very much like the boy who cried wolf, just to get the attention of his small town. 

She goes through times in her life where she is fine.  She is grateful for the opportunity she has to go to dialysis, for she knows it keeps her alive.  She is so grateful for her sweet husband and amazing children who have stood by her and taken care of her through all of this.  She is grateful for all of her family who pray for her and love her.  She is able to keep going and keeps her chin up, even though things are tough.

She also goes through times where she gets down.  She wonders if the transplant is ever going to happen.  She can't stand sitting in the chair at dialysis for one more minute.  She counts down the minutes until she can go home.  She dreads the thought of going, smelling the bleach/vinegar smell, and the headache that will follow treatment. 

She is sure that there is a reason for all of this.  She just wishes she knew what it was.  Band camp started last week, and she is so sad that that part of her life is over.  Someday she will understand.

Finding Peace

I crave peace.  I want peace in my home, I want to drive peacefully, work peacefully, be at peace in social situations, and to be at peace with myself. 

Over the past couple of weeks, as the date for my transplant approaches, I have found myself in a state of panic.  I was worried about so many things...so many "what if" scenarios.  It was driving me crazy.  I'd think about the future and become so scared that I'd actually start to cry.  I think I was driving my husband insane.  He would hold me and tell me that everything was going to be okay.  He's been my rock.

Yesterday a lot of people I know--and many I don't know--fasted and prayed that my lab test would come back with a result that will finally allow me to have the transplant.  My sister Michelle called me and told me that just about everyone in her ward was fasting for us.  She told me that it was one of the first times in her life that she actually knew what it felt like to "feel" people praying for us.  I'm so grateful.

I felt at peace all day yesterday.  Going without food and water for a day is difficult for anyone, but we did it.  Ian and Courtnie joined us, too.  I hope that they learned that they can do hard things, especially when you are doing them for someone you love.

This morning I woke up and felt so good.  "Peace" is hardly the word to describe it, but it's the best word I have.  I had this overwhelming feeling that everything is going to be okay--come what may.  My worries are gone, and I have turned my worries over to the Lord.  As I laid in bed thinking of the future, John 14:27 came to my mind:

"Peace I leave with you, my peace I give unto you:

not as the world giveth, give I unto you.

Let not your heart be troubled, neither let it be afraid."

I felt my Saviors love for me so strongly.  I know that He knows my troubles, and I know that He has experienced the pain that I am going through--both physically and emotionally.  I am so grateful that He has taken me by the hand and is guiding me through this time.  I hope that I can live worthy of His love. 

I Wish...

My cousin Eric passed away yesterday.  He was only nine months older than me.  He died suffering from severe liver and kidney failure.  I can't imagine...

Eric and I were kids together.  I have some fun photos of he and I playing in the back yard at my aunt's house in Idaho Falls.  Some of them wouldn't be appropriate to show to anyone! :)  I guess they didn't make swimming suits for babies back then! 

Eric was always the cool cousin.  His mom was (and still is) very beautiful and stylish, and Eric was always dressed in the coolest clothes.  He had a very funny and outgoing personality and ALWAYS had a goofy grin on his face.

When I broke up with my boyfriend my junior year of high school, Eric came to Utah and took me to our Homecoming dance.  He was a good sport about it, and it was really fun...

I've spent the last little while thinking about the last time I saw him, and I think it was that date.  He hasn't been to either of our grandparent's funerals and I've wondered why. 

It turns out that he's been battling some pretty vicious demons.  I had no idea.  I wish I had known--not that I could have done much about it, but so that he could have had someone else praying for his recovery.  I wish I knew what set him on this course of self-destruction, and I wish I could have been more helpful.  I love him, and miss him as a part of my life.

This event has got me thinking a lot about choices.  If you've read my blog at all, you know I'm a big proponent of choice in every aspect of life.  Each of us comes to earth with a certain amount of potential, and it's up to us how we choose to develop it.  What sets people off down the wrong path?  Is it friends?  Outside influences?  Or do we have complete control over every aspect of our life? 

I believe 100% in the concept of agency--that every choice we make in life has a consequence, be it good or bad.  I wish Eric had made better choices.  I hope that he's making them now and has the opportunity to right the wrongs in his earthly life. I have to believe that we all get second chances.

An Email to Gram

Gram,

Gordon asked me to email you with exactly what my issues are regarding my (hopeful) upcoming transplant. I'm very worried about it, and am so grateful for those who would like to fast on my behalf tomorrow. It means a lot to me, and I know that our Heavenly Father will hear our prayers.

As most of you know, I had cancer as a child. This was during the late 1970s before they started testing blood more carefully for viruses. During the course of my treatments, I had a lot of blood transfusions, and I'm fairly certain that's where I picked up the lovely hepatitis B virus. I didn't know I had this until I started dialysis when my kidneys shut down in December of 2009.

When I started my evaluations for a kidney transplant at Mayo Clinic, I met with a hepatologist (liver doctor), who told me that I could take medications to suppress the virus so that it would be undetectable. I did this for a few months, and was finally cleared for transplant last November. I thought that once I was cleared, I wouldn't have to take the meds anymore, so I stopped.

Since then, I've had other complications, but was cleared again for transplant in February. They tested my hepB level again at that time and the viral count was higher than it had ever been. This set me back yet again, as if I were to have the transplant with my viral count at a detectable level, the anti-rejection drugs I'll have to take for the rest of my life would have let the virus multiply and destroy my liver. I've been on the anti-viral meds again since February, and while the count is trending downward, it still isn't good enough. It started at almost a million in February, was at 500,000 in March, 1800 in April, and was at 1000 on May 10. The hepatologist wants it at ZERO before he'll clear me for transplant.

My transplant is currently scheduled for June 14, and I will have my count tested again on June 7. If I want to go back to work teaching band at the end of July, I absolutely HAVE to have the transplant done on the 14th. I've been told by my district office, that if I don't have the surgery in June, they will find someone else to fill my position. I love teaching, and so desperately want to get back to work! I also want to feel good and be a better wife and mother. Of equal importance to me is to have this done so that my sister (who is my donor) can get on with her life...we've been in limbo for so long!

Anyway--a long explanation as to why we're fasting tomorrow. I have had the power of fasting and prayer work in my life before, and I know it can work again. I need the lab test on Tuesday to come back with a positive result so that this transplant can finally happen.

Love you all. Thanks so much for all of your prayers, faith and love.

Amie

Soul Surfer

While Ian is gone on our stake's pioneer trek, Courtnie and I have been enjoying some "girl time."  Yesterday we went to see the movie "Soul Surfer," a movie she's been wanting to see for a while. 

The movie had a lot of references to religion and Jesus Christ, which made for a great discussion with Courtnie afterwards.  One of the Biblical references that was used was Philippians 4:13, which says, "I can do all things through Christ which strengtheneth me."

The girl in the movie was a championship surfer who was training for the national championships when she was attacked by a shark and had her arm amputated at the shoulder.  She had to learn to do everything over again, and felt sorry for herself at times.  Her father (also a surfer) kept telling her that she shouldn't give up, and quoted the above scripture.

A little while after her accident, her church youth group went to Thailand right after the tsunami in 2004.  This helped her to put her trial into perspective as she saw the devastation around her. 

I have 12 days left until my scheduled transplant.  I'm still not where I need to be with my viral level, and I'm so scared that this will mean another postponement.  In February, my count was near one million, a month later it was cut in half, at the beginning of May it was at 1800, and on May 20 it was at 1000.  It needs to be at zero for the doctor to clear me for surgery.  I'm having another lab drawn on June 7, and if it's close we can draw it again on May 10, but that's it.

If I don't have the surgery on June 14, I won't be recovered in time to start school in August.  The HR director has informed me that if I can't start the school year, he's going to have to find someone else for my position.  This devastated me.  Other than feeling better, the thing I'm most excited about is being able to go back to work.  I miss it so much. 

Putting things into perspective--will it be the end of the world if I don't work next year?  Will I be able to find fulfillment elsewhere?  Would I be able to come back to what I love?

Are there people suffering more than I am?

Am I worrying needlessly?

I'm trying so hard to have faith that things will turn out as I'd like them to, but I've wanted that since last November.  For some reason, things just don't always work out that way. 

I know that Heavenly Father knows the deepest desires of my heart.  I know that He hears my prayers and my pleadings.  I know that He hears the prayers of my family and friends.  It is my continued prayer that He will allow this transplant to go through so that I can get back to my life.

Mommy!

There was a time in my life when I wondered if the picture above would ever be taken. 

I still remember where I was when my mom told me that I wouldn't be able to bear children.  She said that the oncologists told her that if I had the radiation treatments I needed to save my life, my reproductive system would be damaged or even destroyed.  My parents were heartbroken.  As members of the LDS church, we believe very strongly in families and that they are forever.  We also believe that one of our main responsibilities in this life is to bear children and create families.  We are told that we would find joy and happiness in our posterity.

Throughout my childhood and teenage years, I didn't tell anyone but my closest friends that I even had cancer as a child.  I still felt that stigma that plagued me when I was undergoing treatments.  Many people didn't understand then what cancer was, and some even thought it was contagious.  I was teased and made fun of, and had few friends.

I was always worried that I would start dating a man and fall in love.  He'd ask me to marry him and I'd tell him that we wouldn't be able to have children of our own.  He'd back away and tell me that it was too important, and he'd break up with me.  This was the scenario I'd created in my head...even when I started dating Gordon.  For a while, I even convinced myself that I didn't want children.

Early on, Gordon told me he was adopted.  I hoped that he would be open to my situation and would still love me when I told him.  A few days before he proposed, I told him we'd need to adopt our future children, we both cried and he was so supportive.  I knew then that I had found the person Heavenly Father had sent to me.  He was actually excited about adopting...imagine that!  I felt a sense of peace and gratitude that I hadn't felt since learning of my infertility.

We waited six years for Ian, and another four and a half for Courtnie.  I tell them all of the time that they were worth the wait.  I am grateful every single day for their unselfish birth mothers.  They knew that they weren't ready to have a child yet, and thought of their unborn child first.  They wanted their child to have a mother and a father, to be brought up in the gospel, and be sealed to an eternal family.  I know that they think sometimes that others will think they took the "easy way out," but I can't imagine anything more difficult.  I am just so blessed.  I am also grateful that the birth mothers of both of my children have gone on to lead happy lives, have been married in the temple, and have children of their own now.

Being a mom is the greatest!  It brings me a sense of pride, happiness, joy, and peace I could have never imagined.  As I look at my children, I wonder what they will become and how I can help.  I hope that I am teaching them all that they need to know to become good people.  I want them to be happy and lead productive lives.  Most of all, I want them to love the Savior as I do.  I want them to know that the gospel of Jesus Christ is true and that if they follow its teachings, they will know true happiness.

This morning, I woke up Courtnie for school and told her to get in the shower.  When I went back into my room, she was "hiding" under my covers.  I pretended she wasn't there and squished her.  We giggled for a bit, and then just laid there, snuggling, for a few minutes.  It felt so good to just be quiet and "listen" to each other.  I hope she knows how much I love her and am so grateful for her.  Sometimes words just aren't enough.

I'm so grateful for a Father in Heaven who knows my needs.  He knew that I'd need these two very special children in my life...especially at this time.  When things are tough and I just don't know if it's all worth it, I think of my children and can't wait for tomorrow.

The Atonement Covers All Pain

As I listened to General Conference last month, this talk by Kent F. Richards of the Seventy had the most impact on me.  I cried through the entire talk. I'm so grateful for a Heavenly Father who has given us church leaders who know EXACTLY what we need to hear.  I honestly felt like this talk was written just for me, although I know that many others needed needed it as well.  It has given me a new perspective, and I appreciate it so much:

As a surgeon, I found that a significant portion of my professional time was taken up with the subject of pain. Of necessity I surgically inflicted it almost daily—and much of my effort was then spent trying to control and alleviate pain.

I have pondered about the purpose of pain. None of us is immune from experiencing pain. I have seen people cope with it very differently. Some turn away from God in anger, and others allow their suffering to bring them closer to God.

Like you, I have experienced pain myself. Pain is a gauge of the healing process. It often teaches us patience. Perhaps that is why we use the term patient in referring to the sick.

Elder Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

Similarly, Elder Robert D. Hales has said:

“Pain brings you to a humility that allows you to ponder. It is an experience I am grateful to have endured. …

“I learned that the physical pain and the healing of the body after major surgery are remarkably similar to the spiritual pain and the healing of the soul in the process of repentance.”

Much of our suffering is not necessarily our fault. Unexpected events, contradicting or disappointing circumstances, interrupting illness, and even death surround us and penetrate our mortal experience.  Additionally, we may suffer afflictions because of the actions of others.  Lehi noted that Jacob had “suffered … much sorrow, because of the rudeness of [his] brethren.”  Opposition is part of Heavenly Father’s plan of happiness. We all encounter enough to bring us to an awareness of our Father’s love and of our need for the Savior’s help.

The Savior is not a silent observer. He Himself knows personally and infinitely the pain we face.

“He suffereth the pains of all men, yea, the pains of every living creature, both men, women, and children.”

“Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.”

Sometimes in the depth of pain, we are tempted to ask, “Is there no balm in Gilead; is there no physician there?”  I testify the answer is yes, there is a physician. The Atonement of Jesus Christ covers all these conditions and purposes of mortality.

There is another kind of pain for which we are responsible. Spiritual pain lies deep within our souls and can feel unquenchable, even as being racked with an“inexpressible horror,” as Alma described.  It comes from our sinful actions and lack of repentance. For this pain too there is a cure that is universal and absolute. It is from the Father, through the Son, and it is for each of us who is willing to do all that is necessary to repent. Christ said, “Will ye not now return unto me … and be converted, that I may heal you?” 

Christ Himself taught:

“And my Father sent me that I might be lifted up upon the cross; and after that I had been lifted up upon the cross, that I might draw all men unto me. …

“Therefore, according to the power of the Father I will draw all men unto me.”

Perhaps His most significant work is in the ongoing labor with each of us individually to lift, to bless, to strengthen, to sustain, to guide, and to forgive us.

As Nephi saw in vision, much of Christ’s mortal ministry was devoted to blessing and healing the sick with all kinds of maladies—physical, emotional, and spiritual. “And I beheld multitudes of people who were sick, and who were afflicted with all manner of diseases. … And they were healed by the power of the Lamb of God.”

Alma also prophesied that “he shall go forth, suffering pains and afflictions and temptations of every kind; and … he will take upon him the pains and the sicknesses of his people. …

“That his bowels may be filled with mercy, … that he may know according to the flesh how to succor his people according to their infirmities.”

Late one night lying in a hospital bed, this time as a patient and not as a physician, I read those verses over and over again. I pondered: “How is it done? For whom? What is required to qualify? Is it like forgiveness of sin? Do we have to earn His love and help?” As I pondered, I came to understand that during His mortal life Christ chose to experience pains and afflictions in order to understand us. Perhaps we also need to experience the depths of mortality in order to understand Him and our eternal purposes.

President Henry B. Eyring taught: “It will comfort us when we must wait in distress for the Savior’s promised relief that He knows, from experience, how to heal and help us. … And faith in that power will give us patience as we pray and work and wait for help. He could have known how to succor us simply by revelation, but He chose to learn by His own personal experience.”

I felt the encircling arms of His love that night.  Tears watered my pillow in gratitude. Later, as I was reading in Matthew about Christ’s mortal ministry, I made another discovery: “When the even was come, they brought unto him many … and he … healed all that were sick.” He healed all that came to Him. None were turned away.

As Elder Dallin H. Oaks has taught: “Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.”  All that will come may be “clasped in the arms of Jesus.”  All souls can be healed by His power. All pain can be soothed. In Him, we can “find rest unto [our] souls.”  Our mortal circumstances may not immediately change, but our pain, worry, suffering, and fear can be swallowed up in His peace and healing balm.

I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones.

Thirteen-year-old Sherrie underwent a 14-hour operation for a tumor on her spinal cord. As she regained consciousness in the intensive care unit, she said: “Daddy, Aunt Cheryl is here, … and … Grandpa Norman … and Grandma Brown … are here. And Daddy, who is that standing beside you? … He looks like you, only taller. … He says he’s your brother, Jimmy.” Her uncle Jimmy had died at age 13 of cystic fibrosis.

“For nearly an hour, Sherrie … described her visitors, all deceased family members. Exhausted, she then fell asleep.”

Later she told her father, “Daddy, all of the children here in the intensive care unit have angels helping them.”
To all of us the Savior said:

“Behold, ye are little children and ye cannot bear all things now; ye must grow in grace and in the knowledge of the truth.

“Fear not, little children, for you are mine. …

“Wherefore, I am in your midst, and I am the good shepherd.”

Our great personal challenge in mortality is to become “a saint through the atonement of Christ.”  The pain you and I experience may be where this process is most measured. In extremity, we can become as children in our hearts, humble ourselves, and “pray and work and wait” patiently for the healing of our bodies and our souls. As Job, after being refined through our trials, we “shall come forth as gold.”

I bear testimony that He is our Redeemer, our Friend, our Advocate, the Great Physician, the Great Healer. In Him we can find peace and solace in and from our pain and our sins if we will but come unto Him with humble hearts. His “grace is sufficient.” In the name of Jesus Christ, amen.