Living Legacy–Two Years Later

Two years ago today we received Abby’s call, letting us know that a heart had been donated that was a match for Abby. It feels like a lifetime ago.1962705_809049009109765_435397101_n

We were still waiting in a hospital room two years ago at this time, unsure as to when Abby’s transplant would take place. Unsure as to what kind of future was in store.

My mind dwelt most heavily on Abby’s donor and donor family during those long hours of waiting. Abby had been to the operating room before. We were well acquainted with the “routine,” with her surgeon, with what to expect after surgery and what the days after transplant would hold. This was the most serious surgery she had had, but also strangely similar to her previous ones.

What wasn’t similar was the looming thought that after the impending transplant, her heart would no longer be hers. It is hard to contextualize the sorrow I experienced over knowing her heart, the one God made her with, was going to be taken from her. The sorrow was compounded with the stark realization that another child’s heart was to be placed inside her.

Learning to live with those emotions after transplant was difficult. It took getting used to. Sometimes people would ask me questions about our donor before we knew who he was, and I felt fiercely protective of him. Sometimes people seemed to take the transplant too lightly for me, not expressing the right emotion for me. I know it was a fault in my own perspective, and I can’t even describe what it was I wanted them to feel. They were happy for us. Happy for Abby. Happy that she looked healthier than she had ever looked before. Happy that she could walk up the stairs. But I wanted others to realize what sacrifice was made for her. I wanted to know that others really realized what transplant meant.

Along with some of those frustrations, our relationship with Abby’s donor grew as well. It sounds bizarre to some of you, I’m sure. Forming a relationship with someone who isn’t physically present sounds foreign–but for us it has happened in beautiful and often unexpected ways.

We had a connection with Jack before Abby even received her call. On April 11, 2012 Abby and I both “felt” him. Neither of us knew exactly what we were feeling. Abby had only been listed for three days and we weren’t expecting a call that soon. But we both had the distinct impression that a heart was coming for Abby. A feeling of complete and utter anguish filled the pit of my stomach that rainy afternoon. An overwhelming emotion I had never experienced before or after, which filled me completely out of the blue.

Jack began letting us know that he was there after transplant. I KNEW her donor was a young man, an athlete almost from the first time I saw Abby after the surgery. I could feel him guiding me as we began reaching out to his family. They sent us a letter a few months after transplant and when our return correspondence with them got lost, he was incessantly there, urging and encouraging me to do SOMETHING to make sure the letters from us were delivered. His family needed those letters–and he knew it.

On one particular transplant clinic visit a number of months after transplant, I was worried about some difficulties Abby was having. Jack’s mom mentioned that we could have faith in Jack, as Abby’s angel, to take care of her. She was right, the tests came back perfect that visit, and then, as if reinforcing the fact that we could indeed have faith in him, Abby received a small gift after her visit from the Echo lab–a white beanie baby bear covered in the British flag–named–JACK. IMG_0062

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Maybe for many these seem like coincidences. For us they are so much more than that. I’ve had coincidences before, and I’ve had premonitions, and I now I’ve had Jack moments. They feel different, poignant, and they have what I have come to recognize as Jack’s spirit in them. We have learned to look forward to the moments when we get to forge that relationship with him even more.

On Abby’s Make-A-Wish trip, there were a few rides she wanted to go on that she was the only one in the family willing to tackle. Some of us get motion sickness, some of us find some of the roller coasters plain crazy, and some of us have unnatural fear of heights. Abby has none of those and begged to go on some wild roller coasters. I allowed her to, watching her as she disappeared into the line for single riders–feeling guilty and silly. On one particular ride I began to get a bit panicky–anxious. I think that for those of us who have experienced life in the world of Congenital Heart Defects, it is easy to have anxiety attacks over the safety and well-being of your child, especially during the day-to-day activities of normal living. Even though it is irrational, it is some psychological fear that something bad can happen at any time, anywhere.

In the midst of the anxiety filled moment, I felt Jack there, as if letting me know that he was with Abby and I had nothing to worry about. Jack was there, taking care of Abby, in ways that only he can. That is Jack’s legacy, still working miracles in Abby’s life, still a big part of our daily routines, still impacting this world in a beautiful way.

Jack’s mom sent us a beautiful angel she had made in honor of her sweet son. It hangs in our window, catching the sun and light in beautiful colors. It hangs there watching over us, reminding me of this beautiful quote:

“The guardian angels of life sometimes fly so high as to be beyond our sight, but they are always looking down upon us.” Jean Paul Richter 965295_709362129078454_1511282566_o That is the legacy every donor leaves, a vibrant legacy of life, a vibrant legacy of love.

 

Congenital Heart Defect, Heart Transplant, Organ Donation , , , , , ,

Giving the Gift of Life, Giving the Gift of Love

 

2014-BlueGreen_Facebook_publicIt was nearly a year ago when I stood next to Abby in front of a room full of people, people we had never met, but felt a powerful connection to regardless. The bright white lights shined at us so that we could only see the first couple rows of the filled ballroom. Abby’s strength and courage astounding me as she calmly began telling her story, which had become a junction of her story and her donor, Jack’s story, only a year earlier. Because of Jack’s family’s decision during their time of unimaginable grief, Abby received Jack’s heart, which was now beating strong and healthy in her body and together, their stories merged into one.

Those listening to Abby’s story had all experienced the same grief as Jack’s family, making the same decision or carrying out the wishes of their loved ones, essentially merging their loved one’s story with that of a stranger. This was a banquet, a Donor Appreciation Ceremony, thanking them for their gift of life. Telling Abby and Jack’s story was something I was becoming used to, as we had told it numerous times in the previous year. What I wasn’t prepared for was the countless people who stood before us at the end of the ceremony, with tears in their eyes and faltering voices, wanting to shake Abby’s hand and thank her for her story, her courage, her gratitude at the gift she had received. The overwhelming sense of humility and love that overtook me at that moment took me by surprise–an emotion that I had felt many times in the previous year and have come to experience many times since.

April is National Donate Life month. What makes a person decide to donate? What made those in that ballroom a year ago make the decision to donate their loved one’s organs? The answers are as varied as those in that room that night. For many, it was a desire to carry out the wishes of their mother, father, wife, husband, son, daughter, or grandparent. For the young family who had a son nearly Abby’s age who spoke to us after, it was a desire to continue their son’s naturally giving spirit. For the mother whose daughter, a young wife and mother, who had committed suicide, it was a decision that added something beautiful and healing to a tragic and confusing situation. For the couple whose three-week-old baby passed away unexpectedly, it was a decision to give their baby a chance to live and make a mark on the world even though her life had been cut short.

The statistics of organ donors varies greatly from state-to-state here in the US. In states like Montana and Colorado, organ donation registry among adults is high, while states like New York and Vermont have unusually low numbers of registered donors. On average, 45% of Americans over 18 are registered as donors, while the remaining 55% are not. What makes one choose not to be a donor? I assume the biggest reason is apathy. Maybe in addition it is the fact that erroneous facts about organ donation abounds, such as rumors that organs frequently come from unwilling inmates in China who are put to death for their organs (which in itself is an impossibility considering that organs become unusable if not placed within a recipient within approximately 2-4 hours), that medical personnel will not work to save you if you are registered as a donor, or that the system of organ allocation is flawed or ruled by class standing and money. I understand those reasons and understand how becoming an organ donor often isn’t something most of us think about much past marking the box yes or no on our license applications.

Until organ failure creeps in, attacking someone you know, organ donation is simply an abstract, like war or cancer or death. Until it is you standing beside the hospital bed of a precious child or parent or sibling, being asked about organ donation for your loved one laying in the bed, it remains a decision that others have to make. Unless you are a doctor or surgeon or nurse whose patient’s lives depend upon organ donation, it is a decision for someone else. Until you have watched as someone you love slowly deteriorates before your eyes and whose only hope is a decision made by someone else to say yes to organ donation, it is for someone else to worry about. And until you have watched helplessly as someone you know has said good-bye to a loved one when their time waiting for the gift of life runs out too soon, you remain removed from the power of organ donation.

If everyone stood in that room a year ago, feeling and watching and being touched by those sitting in those chairs, organ donations would spike. Organ donation is about the power of charity. It is about the power of love. It is about the power of seeing beyond ourselves. It is about the power of caring about humanity and the lives that surround us. Those sitting in that ballroom faced the tragedy inherent in human life and sought to make an impact on humanity. Through death, they brought life and healing both to those who received their loved one’s organs, as well as to themselves in ways many of them say they didn’t understand at the time.

Consider giving the gift of life.  Tomorrow or next week or next month or next year, that decision may have an impact. That decision may light a spark in others or may save a life. Here is the link where you can sign up, it only takes a few moments.

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Donors are our heroes…real heroes who save lives and display the true characteristics of sacrifice, humility, charity, love, courage, and hope. Thank you to those who donate and those who remain to tell their stories. We are one family who thanks God multiple times daily for Abby’s special donor and his beautiful, healthy heart.

Heart Failure, Heart Transplant, Heart Transplant List, Organ Donation, Say Yes , , , , , , ,

Sometimes it’s the Little Things

935577_571805792852229_1880542544_nSometimes in life it is the little things.  It is the little things that can catch you off guard or it is the little things that can make you feel like enough is enough.  We had one of those “little things” experiences last week.  Abby has been having problems with her eye.  It has been swollen and puffy on and off for a couple of months.  Then, suddenly, she began having vision problems–black dots swimming around in her field of vision–as well as stabbing pains when she blinked.  I called Abby’s transplant team and the nurse transplant coordinator asked me to get her an appointment with an opthalmologist…”like, today.”  She explained that it COULD be a medical emergency in which Abby could have a problem in her eye that could threaten her eyesight.  So, we drove down to The Moran Eye Center at the University of Utah so they could check her eyes out.  They had been busy that day and were WAY behind.  In trying to catch up, they attempted to gloss over Abby’s exam.  Since they didn’t see anything unusual in looking in her eye with a scope, the doctor didn’t feel it necessary to dilate.  I dug down deep, and found some little form of aggressiveness, and basically forced an eye dilation.  Upon looking in her eye, they found a very large retinal tear.  No one knows where the tear came from, and quite possibly it could be an infection in the eye we missed diagnosing, but there is no way to tell what caused it.  We ended up back at the eye center a few days later for retinal laser surgery.

If you have had this done, you know that it can barely be called surgery.  The diagnosis of a retinal tear really should be no big deal.  But, it happened during my final week of summer semester in my Master’s Program at Weber State.  I ended up missing school because of the initial appointment.  My husband was out of town on a work trip at the time.  And, the unknown of if some infection was in her eye at some time that we missed really scared me.  This little diagnosis and retinal surgery felt overwhelming.  A little thing that amounted to much more.

I assured Abby and the eye surgeon that she would be able to undergo the surgery without being put completely under with anesthesia…after all, this girl is tough as nails and I was sure the little eye laser would be nothing.  She was not so sure.  You see, the night before the surgery, she explained to me that the thought of having anyone touch her eyes was causing a lot of anxiety.  She was just as nervous as if she were going in for an open heart surgery….almost.  I had no idea she had issues with people touching her eyes.  Of course, I have worn contact lenses in my eyes from the time I was Abby’s age.  Fingers, foreign objects, and lights in my eyes is like second nature.  I had to remind myself of this when I was talking with Abby about it.  She has never even had a complete eye exam.  Although the surgery is minor…for Abby it was one of those little things that amounted to much more.

Quite possibly for good reason.  You see, the director of the retinal surgery–the man we saw at the initial appointment–was not the man who ended up doing Abby’s eye surgery.  It was a much younger, “hot-shot” doctor.  I’m sure you know the kind.  He was confident in his skills as an eye surgeon.  Well, Abby struggled through the surgery.  They held her eye open with metal clamps that made it so she couldn’t blink.  They then asked anyone in the room to put on special laser goggles.  Then, they went to work shining the laser through a magnifier into Abby’s forced open eye.  The one that was dilated.  She couldn’t keep her other eye open and she also couldn’t keep her eye still for the surgeon.  He began to say things like “Keep your eye still” and “You need to stop moving your eye” and “Hold your eye steady”.  The frustration and irritation he felt towards her was VERY apparent in his tone.  He got more and more frustrated.  After twenty minutes the head surgeon stopped in…and the doctor all but threw Abby under the bus.  He kept telling the surgeon that he would be done but that Abby couldn’t stop moving her eye and she couldn’t focus where he needed her to.  Abby sat the whole time with her hands in fists right underneath her chin and every time he barked out a frustration at her she would reply “I’m trying” or “It’s so bright” or “This is hard”.

Now, don’t get me wrong…The Moran Eye Center and the retinal surgery clinic is TOPS at what they do.  I have no complaints about the service we received.  I have no complaints about the fact that we have to go back to finish the surgery since Abby needed a break so bad that they couldn’t finish.  I have no complaints about the surgeon.  Working with children can be hard if you are not the right person for the job…and he obviously was NOT the right person for the job.  And I realized how blessed we are to have Primary Children’s across the street.  The hospital where we love the nurses and doctors we work with there.  Where medical professionals don’t let their frustrations show in their voices.  Where something that is hard for Abby to do is met with gentle encouragement or problem solving so that Abby is able to do what they are asking her to do.  A  little thing…but what a difference those little things can make.  Abby ended up in the parking garage after her surgery discouraged and upset because of how angry the surgeon was.  I have never seen a doctor upset Abby before–a little thing, but one that amounts to much more.

Abby made it through her eye surgery.  But the little things mean a lot.  They can make a heavy load feel like it is too much to carry, or they can make the heavy load just light enough to lift. I came across a quote that said “True greatness consists in being great in little things” and I think that might be true.  Sometimes, it is the little things that make all the difference in the world.

Congenital Heart Defect , , ,

One Heart, One body, Two Spirits

It has been a year and three months since Abby had her heart transplant.  I have gotten used to her medicine routine.  I have gotten used to increased doctor visits.  I have gotten used to a weakened immune system.   What I can’t get used to is using the phrase “her heart.”  It isn’t her heart.  It never will be her heart.  I don’t ever want to get used to it.  I have started typing it, or using it before, and then I stop and correct myself because, I don’t ever want to forget that it isn’t her heart!  It is a heart made out of the same fabric…the heart of a warrior, but it isn’t Abby’s, it is Jack’s.  There still isn’t a day that goes by that I don’t think about that.  Jack’s heart, Abby’s body, and both of their amazing spirits are working together to give her life.

Today I was thinking about it, and realized that one of the greatest lessons I have learned in our journey with a CHD daughter is summed up beautifully with my discomfort claiming Abby’s donor heart as hers.  It is easy in life to close ourselves off from others.  It is easy to feel that we can do it alone.  I am independent and often like to do things my way, without the help or advice from others.  Since having Abby and being told of her Tetralogy of Fallot, I had to learn to rely on others.  I remember distinctly sitting in a cardiology office when she was three days old and putting all my hopes in her cardiologist.  I remember handing her over to a surgeon, knowing that I NEEDED him in order for her to live.  I vividly recall the week we spent in the hospital after she was diagnosed with heart failure and looking to the heart failure cardiology team to find out what was wrong and save her heart.  And now, I look to Jack and his heart daily to continue supplying Abby with what she needs.

The Congenital Heart Defect world is a community.  A beautiful community full of other mothers who have sat in the same offices and anguished over the same concerns and who are always willing to drop everything for another heart mom.  The community is filled with adult CHD’ers who are always there to give us hope and offer words of advice and guidance.  The community is rich with medical personnel who we have cried with, agonized with, planned with, counseled with, and trusted our children to when they were the only ones who could save them.  This community is filled with amazing friends who reach out not because they also face the challenge of CHD but because they know and love someone else with CHD.  This is a community–working together to save as many children as possible.  Just like the stars in a solar system, each one adds light and beauty to an otherwise dark world.  Like the stars, our CHD community works together to offer hope when hope is needed.  Just as Abby and Jack work together, so does this amazing community.

I don’t ever want to forget that Abby’s journey with a broken heart has been touched by thousands of others who have taught me the beauty of working together.  I always want to remember that Abby’s broken heart was saved by a community of angels.

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Congenital Heart Defect, Heart Failure, Heart Transplant, tetralogy of fallot , , , , , , , , , ,

Learning What I Forgot

DSC_3552This blog is all about Abby.  It is about dealing with her Congenital Heart Defect from her mother’s point of view.  It is about Tetralogy of Fallot, open heart surgery, cardiology, valve replacements, heart failure, and living after her heart transplant.  It isn’t directly about the three boys above…but everything I write about affects them directly.  So, in a way, it is also about them.  And today, they are the focus of this post.  Thanks to them, a part of me I haven’t been in touch with for such a long time was awakened.

Abby is away at a church youth camp.  Her dad is away on Air Force business.  I promised these three boys we would do something fun this week since they were feeling left behind.  After finding a babysitter for the twins, we decided on a trip to a local aquatic center–and they were excited!  We arrived at the pool and I took my customary place on the sidelines…watching them have fun and thinking.  Thinking about the school work I should be doing for my Master’s program.  Thinking about how guilty I felt for not bringing the twins, but knowing I couldn’t keep my eyes on all five.  Thinking about Abby.  Wondering if she was having fun.  Hoping she had taken all her medicines on time.  Worrying that sleeping in a tent might hurt her back.  Thinking about missing my husband.  Thinking about how self-conscious I felt in my swimming suit and comparing myself to all the other mothers at the pool.  I sat thinking WAY TOO MUCH!  And watching my boys have the time of their life.

And then, one of them wanted me to ride the big waterslide with him.  I agreed, somewhat reluctantly.  As I sat him on my lap and we rode down the slide, I thrilled at the sound of his giggle.  As we reached the bottom, my other boys were so excited that they begged me to stay in the water and play with them.  And I did.  We played tag, had tea at the magic mushroom, went down the waterslide numerous times, swam together in the deep end of the pool…and I had a blast playing with my kids.  And in an instant I realized that I had forgotten.  I had missed this, and in fact, I couldn’t remember the last time I had just let go and had a fantastic time playing.

In the last two years, I found out I was having twins.  I finished and graduated with a bachelor degree.  I had twins…TWINS!  I found out Abby was in heart failure.  I watched, helplessly, as doctors tried to fix her damaged heart.  I went with her to more exams and tests than I can remember.  I worried.  I feared.  I cried.  I experienced ups and downs and ups and downs again.  I watched her slowly lose energy and ability to carry on with daily activities.  I worried over listing her for a heart transplant.  I anguished over the implications of what that meant for another family if she were to get one.  I worried over what it meant if she didn’t get one.  Before I could wrap my mind around any of it, we got the call.  The recovery process and first six months following her transplant were mind-boggling.  I started a master’s program.  I did a lot of things in the past two years…including failing to find pure joy.  Failing to have fun.  Failing to take it all in and enjoy!!  And in an instant, in the giggles of a four-year-old, blue-eyed imp, in the rough and tumble play of boys, in the imagination that only boys can produce–that part I had forgotten was awakened.

It is so easy to forget how to have fun.  It is so easy to replace enjoyment with hope.  It is far too easy to live life in trauma mode and then fail to climb back out.  Oscar Wilde said “Behind every beauty that is exquisite was something tragic.”  In that pool with my boys I rediscovered the exquisite beauty of engaging motherhood that can only be experienced by plunging in completely.  To be honest, I don’t think I ever would have understood the full beauty of the moment without the tragedy of Abby’s broken heart.

 

Congenital Heart Defect, Heart Failure, Heart Transplant, Heart Transplant List, Open Heart Surgery, Stress, tetralogy of fallot , , , , ,

She’s a Butterfly

One thing I have learned on this journey with Abby through her congenital heart defect and her heart transplant is that I couldn’t do this alone.  I need support.  I need to be reminded of how many people love Abby and wish the best for her.  We have amazing family and friends but I have also found a certain sense of welcome and understanding in friends I have met online.  I am a member of a number of groups or pages that offer support to parents dealing with congenital heart defects, Tetralogy of Fallot, and life after heart transplant.  Usually those groups offer nothing but the support and acceptance I need, but lately, I have noticed a certain tone on some of them.  A tone that hit a deep but still raw nerve in me.  There has been lots of discussion about the negativity many heart transplant parents or patients have.  It seems that many in the heart transplant world believe that life after transplant is easy as pie…and that worrying about rejection or graft failure or medicine levels is just pessimism at its height.  Well, I admit I worry.  I worry a lot over the future and Abby’s heart and catching something she can’t fight off.  At her last clinic visit it was discovered that Abby has developed a Donor Specific Antibody (DSA) which could potentially fight against and damage her beautiful donor heart.  That required a new change of meds, which terrified me considering last time we had to change medicines we spent ten days in the hospital with near zero white blood cells, strep, C-Diff, and a constant struggle to get all her levels where they needed to be.  So, reading on these boards that I should be ashamed because my daughter had been give a “second chance at life” and my worry was nothing but looking on the negative side of things bothered me…but it also got me thinking about pessimism and optimism.  I’m an optimist…almost to a fault.  Becoming a mom really put my optimism to the test, especially a mom to a daughter with heart problems.  Not worrying about Abby and her future would be like expecting the sun not to shine or the grass not to grow.  I will always worry.  But, in the midst of fretting over whether to leave the boards that were bothering me or post a nasty retort about how not having some degree of worry and understanding of what could happen would be sheer irresponsibility, I came across this:

1043900_10151621559422933_1214209146_nThis quote was posted on marriage guru, Matt Townsends’s Facebook page.  And it is beautiful, isn’t it?  I have no control over Abby’s length here any more than I do my own…but I certainly can do something about the depth and width of her time here.  I can make every day beautiful.  And I came to understand what people on the boards meant–not that life isn’t worth worrying about or that bad things won’t happen in the future, but that worrying about it overly much will only ruin the opportunities of today!  So, I post this to remind myself, because this morning Abby went on a church youth camp trip.  And I. Am. A. Nervous. Wreck!  Talk about WORRY.  It is the first time Abby has been away, responsible for herself, without a family member there, since her transplant.  She is responsible this week for medicines and germs and cleanliness…and for having fun and making memories.  I contained my worry–somewhat–and dropped her off because eventually I knew this day would come.  And let’s face it, this is the first of many, many more!  So, to honor my resolve to quite worrying about time and worry more about depth and width, I made a quick slideshow to share all that Abby has been up to the last number of months!

God Bless the Butterfly (Martina McBride)

And we are celebrating the little milestones as well as the big.  We are taking every day in, and we are happy to be learning the fine line between worry, pessimism, and optimism.  We are thankful for Abby’s donor heart, giving her the ability to spread her wings and learn to fly on her own and watch our own little butterfly blossom.

Congenital Heart Defect, Heart Transplant, Stress, tetralogy of fallot , , , , , , ,

Learning About Life from Mia, Jack, and Abby

It was just one year ago. Abby reminded me of that yesterday when we were driving to her little brother’s birthday at the park. Last year at this time, Abby was just coming home from an unexpected and life changing stay in the hospital. One year ago we were just trying to deal with Abby’s diagnosis of heart failure. We were learning the ins and outs of Abby’s Life Vest and wearable defibrillator. We were giving Abby medicines hoping that it would buy her time, hopefully years, before she would need a transplant. We had spent the previous days coming to terms with the complete shock that Abby was in heart failure. We had discussions with doctors about defibrillators, pacemakers, heart failure, and heart transplant. Only a year ago…and yet it feels like ages. It feels like that year has disappeared into a big conglomeration of hospital stays, doctor’s visits, surgery after surgery, medicines, worry, fear, pain, and joy. And time is one thing I feel I can’t lose a minute of any more.

Abby has been doing well and I haven’t posted much on here in part because life has been fairly stable. We have seen some hiccups–but nothing that couldn’t be treated with medicine changes or hospital stays. We have had a couple minor brushes with rejection, but nothing that didn’t respond well to steroids. We are STILL trying to tweak Abby’s medicine to get ALL her levels in the right range at the same time, which has proved to be difficult for Abby. But, more or less, we are here. Abby has started online school, which she isn’t thrilled about but is doing well with it. Abby’s siblings have returned to school. Our lives are busy and hectic and really not too much to post about. At least that’s what I thought. One of Abby’s friends was Skyping with her the other day and told me I needed to make more posts to update them all. I think sometimes we forget how many friends and wonderful people are genuinely concerned with Abby and how she is doing…especially since Abby gets out VERY rarely at this point. I was reminded by one of Abby’s amazing friends why I need to blog every now and then, if nothing more than to keep those friends connected and informed and involved with Abby’s life in whatever way they can right now.

This idea that nothing much has gone on worth blogging about was rolling around in my head last week when we hard about Mia McDonald. Many of you may know her better than we did. She was a baby, born into this world, like Abby, with a congenital heart defect. She received the beautiful gift of life when she was four-months-old. She did remarkably well with her transplanted heart for nearly four years. The family was celebrating Mia’s life with her Make-A-Wish trip to Disneyland in Florida to meet Minnie and Mickey Mouse. Hours after the plane touched down in Florida Mia fell ill. The family thought she may have pneumonia and took her to the hospital. There, they learned that Mia was in rejection, with her heart working at only 40%. She had a heart cath to determine the full extent of Mia’s needs and she suffered cardiac arrest during the cath. She came out of the cath on life support and it was later discovered that she had no brain activity. Mia’s family said good-bye, unexpectedly last week. They donated as many of her organs as they could. You can read more about Mia on this KSL news story or at her family’s blog or at a site set up to help ease the financial burden the McDonalds are facing. You can also watch this beautiful video Mia’s mom created for Mia’s little donor’s mother, who incidentally was able to meet and hold Mia before saying goodbye in the same few moments.

Why do I share this? It is devastatingly sad. And it affected me deeply, but not in the way you may think. I cried for Mia’s family and I can’t begin to imagine how it feels to lose a piece of your family, your soul, your heart the way Mia’s family did, or her donor, Jacob’s family, or ANY family. But it gave me pause. Because, those moments I haven’t been blogging about are not nothing to blog about or no big deal. Every moment of this life is SO valuable, for all of us, isn’t it? Each moment is measured and counted and none of us knows when those moments here on Earth will come to a close. Mia reminded me of this. I admit that as a transplant mom I have fear over HOW LONG do we have? How many years will Abby’s special heart beat? It is a matter of reality for all of us with transplanted children. They last 10-20 years for very successful transplants. Less for less successful transplants. Mia has helped me understand that better.

This thought, combined with the fact that Abby’s beautiful donor’s birthday is coming up on October 16th made the reality of the precarious and fragile nature of life more tangible. I’ve thought of him daily still. Life is a gift, in any form. Abby’s life is a gift from not only a loving Heavenly Father, but also a young man named Jack and his family’s amazing sacrifice. I can’t return to the complacency of living life as it happens. Instead, in honor of Mia and Jack and SO many others like them I will try to make more of life. I will make memories, I hope daily, with Abby, and Nathan, and Gavin, and Ethan, and Parker and Andrew and their father. I will realize the importance of not only the big days and the big accomplishments but also the little moments and the seemingly inconsequential activities. I will love them. I will make sure they know I love them. I will take time to pull over and look at the leaves changing colors. I will jump in the puddles with my kids. I will read the extra story before bedtime, I will talk when they want to talk and I will listen when they need me to listen…I will try to take time each day to value the moments I have been gifted with those in my life.

Life is a gift. Mia knows it. Jack knows it. Abby knows it. And I hope to know it.

 

Congenital Heart Defect, Defibrillator, Heart Cath, Heart Failure, Heart Transplant, Medicine, Organ Donation , , , ,

PTSD…or Post Transplant Shock Syndrome

This will be one of those emotionally honest posts.  You know the kind.  You’ve read them before.  The scenario is that someone is opening up a private and secret part of their soul to readers.  It can be uncomfortable to read.  It can be uncomfortable to write.  It can feel like you are witness to something that should be kept guarded.

It is because of those feelings that I am writing this post.  I have thrown the idea around for a few weeks now.  At first, I was so entrenched in my overwhelming feelings that whenever I attempted the post, it came out in a mess of words that meandered along with no form of meaning.  The only thing within the writing was a burst of emotional outpouring here and there.  I am past the period where the emotions were completely drowning me…but I worry that there are others out there who may be feeling the same way and wondering what is wrong with them.  I asked “why am I feeling this way?”  “What is wrong with me?”  “Do I need help?”

If I am being totally honest, I would have to admit that I had a long list of unusual feelings.  This list includes:

*Feelings of isolation

*Extreme sadness

*Feelings of helplessness

*Anxiety

*Wanting to be left alone

*Avoiding people

*Lack of energy

*Inability to concentrate

*Unexplained crying

*General feelings of sadness, loneliness

*Extreme muscle tension

*Frequent headaches

There is my list.  Obviously. some of these feelings don’t make sense.  The feelings of isolation were so bad sometimes I thought I was going crazy.  Days on end of feeling alone and yet when opportunities arose for social interactions, I avoided them.  I had a house in need of cleaning and organizing.  The laundry was piling up around our ears, and yet most days I found myself sitting on the couch watching TV or just plain wasting the day away doing nothing.  In April, my daughter received an extraordinary gift–the gift of life.  I should be ecstatic.  I should be happy.  I should be dealing with all of this better….right?

Not necessarily.

After weeks of feeling this way, I began to worry about my emotional well-being.  I did what I always do when I am perplexed, I ”googled” it.  What I found was that my feelings of depression and anxiety are not unusual or rare following a heart transplant in my child.  Articles have been written and studies done concerning the psychological well-being of primary caregivers of heart transplant patients.  You can see the google results yourself by searching “primary caregiver psychological disorder post-transplant”.  What I found was that in as much as 40% of transplant cases, depression, anxiety disorders, and PTSD symptoms are common.  They are most common within the first year post-transplant, with the most severe feelings peaking between 2-6 months.  These symptoms occur more commonly in women.  They occur less frequently in women who work outside the home.  The symptoms are exaggerated in instances where the primary caregiver has less outside support.  Despite a successful transplant, feelings of stress are added by the new worries of medicine regimine, rejection, increased hospital/medical visits, uncertainty over future when transplanted organ (usually 10-20 years in hearts) fails, increased concern over sickness and/or illnesses, and the increased worry of common transplant complications such as diabetes, coronary artery disease, and/or cancer.

There it is, out there, kind of like the dirty secret that is hard to talk about.  I’m sure that many of you may be wondering HOW I could be feeling this way.  I would have wondered the same thing before I ever experienced it myself.  I want to reiterate that I am not ungrateful for Abby’s gift.  I am not unaware that many like her won’t ever receive the same chance.  I am not diminishing our beautiful donor’s sacrifice nor his amazing family.  I still think of them daily numerous times.  I am still fiercely protrective over his memory.  I still feel an indescribable connection to him and his family.  I am still in awe and gratitude towards the medical personnel who made this possible.  I am still extremely appreciative of Abby’s amazing friends who have loved her through this in a thousand little and big ways they don’t even know matter.  I am still grateful to an amazing family and amazing friends who helped us through this every step of the way.  Even though I have all these positive feelings, they could not prevent the onslaught of depression.

The purpose of this post is to be open about this aspect of transplant.  Not every primary caregiver will experience this.  But you might.  If you do, please know it is normal.  If your feelings are severe, affecting  your ability to care for those around you, please don’t  be afraid or ashamed to seek medical advice.  If you are feeling this way, don’t be afraid to talk to someone who can help.  And please remember you are not alone.  Don’t be ashamed of it, despite the fact that depression and psychological issues remain a topic of secret shame in our society.  You can get help, and getting help will make you feel better.

If you are a friend or family member of a caregiver of a heart transplant recipient, please look for signs they are needing some help.  Don’t assume they are acting irrational or strange or ungrateful or unreasonable if they have some of these signs.  Reach out.  Listen without judgement.  Remember that depression and anxiety are brought on by situations in which the stress is beyond normal everyday stressors.  I can’t begin to put into words what it feels like to experience the extreme highs and extreme lows of heart failure and transplant.  Watching as the life of your child hangs in the balance, hoping and praying for transplant, getting a new heart, having the realization of where the heart came from, possibly learning about the donor, and learning how to live life FAR differently than before is H.A.R.D.  Give your loved one as much empathy as you can and try to help them talk about it.  Try to help relieve the isolation that follows a transplant since a transplant child is VERY limited on where they may go.  Offer to do simple chores for them like laundry, bringing in meals, or taking other children periodically.  Don’t give them a time limit…these feelings can last for months.  Don’t expect them to feel better when you want them to, stress works differently on everyone.  Most importantly, keep reminding them you are there, you may not understand completely but you know what they are going through is hard.  Love them.  Care about them.

I am feeling better…much more like myself in the past week or so.  I don’t know what changed.  My boys went to stay with their grandma  in Montana for a couple weeks (which was LONG for mom, but fabulous for them), Abby was able to get away to Cedar City to see a brand new sweet cousin with her other grandparents for a few days (with super strict cleanliness requirements and constant hand washing and care not to be exposed to stuff), and my husband arranged for an overnight babysitter (awesome aunt) for the twins so we could get away on a little retreat.  We planned nothing, slept at a brand new Hilton thanks to a great military discount, had delicous Mexian food, and slept until 9:00 AM!!!!  I was able to regroup, relax, and refocus a bit.  It helped…tremendously.  Had I not been able to shake the feelings…I would have definitely sought professional help.  I still have moments of fear or sadness but overall, I am feeling better.  School is starting next week, I have gotten my house a little more caught up and organized (okay, not the laundry), and I have other things to keep me occupied, like Abby’s online schooling!

Depression after transplant is normal.  It is okay.  I wanted to make that clear with this post.  Don’t think it is wrong or strange or something odd.  This blog is a way for me to spread awareness, and this is something I think should be discussed more openly for those dealing with it.  Your child’s social worker can help.  A counselor can help.  A listening ear can help.  A caring husband.  A family doctor.  A sympathetic mother.  Lots of people can help, if you are brave enough to open up and discuss it.  This is one more way that living with a CHD and/or heart transplant can affect us.  Fixing your own broken heart is just as important as fixing theirs.  Because this is worth celebrating:

 

Congenital Heart Defect, Heart Transplant, Open Heart Surgery, Stress, tetralogy of fallot , , , , , , , , ,

Neutropenia, Toxicity, and Strep Throat

I’d love to do this post justice…but I won’t.  I’d love to explain to you everything that we are dealing with right now…but I can’t.  I honestly think you ‘d need an advanced degree in biomedical chemistry to understand fully what is going with Abby.  I have the gist of it, sort of.  I’ll try to explain it all.

Abby had a biopsy scheduled for Thursday,  July 12th to follow up on the E3 rejection she was experiencing two weeks ago.  We hoped that this mild cellular rejection episode would be cleared up and things would look good.  Wednesday, Abby had been complaining of a headache all day.  Since she can not take Ibuprofen, we were attempting to relieve her headache with Tylenol, which just kept getting more severe as the day wore on.  By bedtime, she was in quite a bit of pain.  At 2:00 AM her headache was severe, and even though she was not supposed to have anything other than clear liquid at this point, I gave her a Tylenol anyway.  At 4:30 AM I woke her up for the biopsy and she still had a severe headache along with nausea.  She dry heaved a couple times and I knew that the day was most likely to end with Abby sleeping in a hospital bed.  Her nausea/vomiting continued to get worse as we drove to the hospital and her headache became nearly unmanageable.  I have never been more relieved to have her taken into the cath lab knowing that in a few moments she would be put under anesthesia and would be free from all her pain.

The biopsy went smoothly, with the heart and pressures looking great.  Abby woke up from the anesthesia hard and immediately needed Zofran to calm her nauseous stomach.  Her head was still throbbing and the transplant team showed up before Abby could even make it out of recovery to deliver “the news” to us.  Dr. Molina explained that Abby’s white blood count was lower than it had ever been.  She was at a total count of 1100 and a white cell count of 200.  She had Neutropenia.  We have been battling Neutropenia, or low white blood cells for over a month now.  This can lead to serious problems….and with Abby obviously sick with some kind of bug and with a white blood count that continues to dip into the severe range, admission to the hospital was warranted.

They arranged for a room for us and immediately began taking swabs and cultures to see what Abby was sick with.  Either Abby had a disease or infection that was causing the Neutropenia or her combination of medicines was the culprit.  We met with a team from infectious disease who ordered even more tests.  Abby’s rapid strep test came back positive, which was good.  Strep is treatable in post transplant patients with high doses of intravenous meds–and it also gave us an answer to why she was having severe headaches and nausea.  Strep didn’t account for the severely low white blood count though.

After a number of other tests came back negative, it was determined that Abby’s medicines are to blame for her lack of white blood cells.  Overnight, her numbers dropped even more until Dr. E explained to Abby that she was confined to her room.  Abby complained, saying, “Some of the other transplant patients with low white blood cell counts get to leave their rooms…”  Dr. E smiled and said, “No one has as low a white blood cell count as you do right now.”  Her white blood cell count fell again Friday night…and is now hovering just above 0!

The culprit appears to be a pill called Valcyte.  In it’s IV form is it called Gancyclovir, and the nurses and doctors who administer it have to dress like the nurse in the picture just to administer the medicine in the IV form.  It is part of the drug regimen administered by Abby’s transplant team to all transplant patients at this hospital.  She was getting her normal doses of it, through the IV since her stomach could not keep anything in it.  For most patients, this pill works to prevent infections…but in a very small percentage of transplant patients, this medicine can make their bone marrow toxic.  After the toxicity has set in to to the bone marrow, the white blood cells are no longer produced.  This medicine, which has some crazy warnings that include the danger of toxicity, anemia, some diseases I have never heard of, and being carcinogenic to animals, is very hard on patients…and for a small percentage…impossible to take.  Abby seems to fall into this category.

So, she has had the Valcyte/Ganciclovir removed from her drug regimen for now.  She has been put back on Nupogen for now to help stimulate the white blood cells, and she was given a hefty dose of IVIg.  IVIg is a blood plasma product and is basically the antibodies found in blood products.  It can have some scary side effects, which included severe chest pain for Abby, but should help boost Abby’s white blood cells as well.  Once they have seen that the white blood cells are being produced and rising in her system, Abby’s medicines will need to be tweaked and she will need to go on some new medicines that will hopefully work with her system better.

While we are happy they have found the cause of the Neutropenia, Abby’s biopsy still showed E3 rejection.  This puts Abby in a hard spot right now.  Usually, her anti-rejection drugs would be bumped up to fight the rejection, but right now, Abby’s anti-rejection drugs can not be increased without killing off the white blood cell production they are desperately trying to stimulate.  So, we can not treat the rejection right now.  The good news is that the IVIg transfusion should help the rejection and the rejection didn’t increase from last time.  So, our hope is that the rejection will resume itself, which often times is the case with mild rejection, or will at least remain at bay until Abby has enough white blood cells to increase her anti-rejection meds.

There it is.  The short of it.  We expected these setbacks now and then…of course I would much prefer the more common type of setback, but that is okay.  It is okay because while we were here at the hospital on July 13th, some other mother was missing her son who three months ago had just passed away, and she had told the doctors “yes, I want to donate his organs.”  Three months ago on July 13th, this mother left the hospital without her beautiful boy…and Abby is here, setbacks and all because of them.  So, we will take the setbacks, and know they are going to happen.  We will work through them, in honor of this amazing boy and his family who made it possible for Abby to be having these setbacks.  We won’t complain…and Abby has not complained much at all since we have been here…but we will push forward and be thankful that even though these issues are going on…and even with the minor rejection…Abby’s heart function continues to look beautiful and strong.  Her heart sounds perfect and the doctors are pleased that her donor heart is working as well as it is, in spite of everything else.  We are thankful for everyday for this gift of life beating inside Abby’s chest.

Congenital Heart Defect, Heart Cath, Heart Transplant, Organ Donation , , , , , , , , ,

Star Gazing

Don’t cry when the sun is gone, because the tears won’t let you see the stars–Violeta Parra

By Sylda31 (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

I believe it can be hard to let go of the past…even if the past was hard.  For a long time, after Abby’s heart transplant, I missed the relative ease of life before her heart failure.  When Abby’s diagnosis was only Tetralogy of Fallot, when Abby’s heart troubles were thought to be behind us, and even when Abby was living with left ventricular heart failure, life seemed simpler.  For the last couple months, adjusting to Abby’s new life with a new heart has been difficult for me.  Everything about it felt difficult, and I admit that I definitely focused on all we had lost when the sun was “gone” so to speak.  For those of you wondering what we could have possibly lost when Abby had her transplant, I hope you don’t mind if I share with you.  The list includes (and probably isn’t limited to) only seeing the cardiologist once a year, changing to a new team of cardiologists, being MUCH less worried about diseases and sickness, going out in public (at least for quite some time), Abby’s last few months of elementary school, Abby’s first few months of Jr. High, Abby’s first year of girl’s camp with her church group, Abby’s first year of youth conference with her church group, no traveling, medicine free days, the knowledge that most transplants last 15-20 years…and then what?, Abby’s ability to carry and have her own children, a child with a less severe health condition, and a world free of so much WORRY.

That is the list we have been dwelling on and worrying over.  I was talking to Abby’s Nona the other day, when I finally was able to LET go of dwelling on all we had lost, and start focusing on all we had gained instead.  There is SO much to this list and so much of it I have yet to discover.  Abby’s Nona brought this to my attention and helped me frame this thought better when she explained that the thought of doctors taking Abby’s heart out was terrifying…and hard to let go of.  Abby’s old heart is the one we had come to love.  Even giving up that old heart and knowing it is sitting in a plastic container on a shelf for educational purposes at Primary Children’s Hospital makes me a little sad still.  And then it hit me, Abby’s heart is W.H.O.L.E.  How beautiful is that?  What a miracle is that?  She can run with the endurance of her friends.  She can walk up stairs without getting winded.  She can grow.  In the midst of this conversation, I thought back on a memory from a couple years ago.

The last time we were at Disneyland, Abby and I ventured on Space Mountain, my favorite roller coaster.  As we got on the roller coaster and began to venture into the darkness and deafening sound of the ride, I panicked.  I couldn’t watch Abby or see her or hear her…so I did all I could think of…I kept putting my hand over her chest to feel her heart beating.  It didn’t skip a beat…and at a moment when I could actually hear her yells over the roar of the ride, she screamed, “What are you doing?”

I yelled back, “making sure you are okay!”

“I’m JUST FINE!” she responded laughing at me.

And that will never happen again!  Ever!  The next time we ride roller coasters or thrill rides, Abby will have a beautiful whole heart that I don’t need to worry about.  We have met a new team of cardiologists and doctors we have come to love like our last (and our last cardiologist incidentally performs most of Abby’s biopsies), Abby can adopt, 15-20 years is more than we would have had without a transplant, medical science is rapidly racing toward some amazing cures and breakthroughs for our heart patients, Abby will be able to go to school again and meet a whole new world of friends while still holding on to friendships that will always mean the world to her because of what they went through together.  In short, she has years and years of an amazing life to live…because of the heart transplant.

I still am sad the sun is gone…but I have to admit that the stars are breathtaking…and I won’t blurry them up with any more tears!

 

 

Congenital Heart Defect, Heart Failure, Heart Transplant, Organ Donation, Stress, tetralogy of fallot , , , , , ,