I thought December would be the hardest, certain it would break me … the first Christmas without John. We missed John terribly, but somehow woven into our moments of sorrow, were also moments of joy and light. Then came January with its bitter cold and darkness, making my grief feel heavier and more consuming, if that is even possible. I am not liking January … at all.

January has rendered me a lazy, emotional mess. Most of my evenings are spent on John’s corner of the couch, where he spent so much of his time these past two years. It was his spot to recover from chemo, watch movies and sports, snuggle with his dogs, and simply be present with our family. Here I find comfort, but little motivation. Motionless evenings have become my norm, my body feeling as though it couldn’t possibly muster up the energy to do anything productive. The tears have been quick to flow, so many tears, most often without any warning.

There are moments when I am able to blink the tears away as I feel their brief beginnings tickle my eyes, but more often than not, what starts as a trickle becomes a quiet battle between a steady stream and a tissue in my hand. It happened today during the simple task of vacuuming, and then again while riding in the car as Jon and I ran errands. Several times this past week I fought back tears at school—though never when I am with my students, teaching. That is likely because my brain is far too busy with all things teaching to make room for anything else. It’s the unsuspecting moments, when I am alone, that the tears decide to spring without warning.

I had a Zoom parent meeting with colleagues this past week. The meeting went well, with no reason at all to feel upset. I clicked the red End Call button, exited out, and looked down to see the small ornament of my smiling John holding Izzy. And then—bam—out of the blue, I was hit with a flood of emotion. I remember thinking, “Where did that come from?” The same thing happened on another day when I was eating my peanut butter sandwich at my desk. I remember thinking, “Come on … just let me eat this stupid sandwich!” It is in the stillness of my days where the tears like to make their presence known.

Last week I had an eye appointment and once again I was hit with a flood of unexpected emotions. Running late, I dashed up the steps to the second floor to my appointment. There I was met with the empty waiting area that John and I had sat in several times this past summer as we tried to find reason and relief for his blurry vision. I sat in the double seat as I always had done. I would pat the seat to beckon John to sit by me. Of course he never would, but he would always take the single seat on the other side – close to his mom, but not too close.

I popped up to grab a tissue, wondering if an eye exam could even be completed on a basket-case of a person with tears streaming down her face. Pacing and breathing exercises immediately commenced as I battled the wave of emotion, trying to dry my eyes and regain some composure. The movement seemed to help—until I was led into an exam room. The very exam room where John had spent several appointments having his big, beautiful brown eyes examined. I was told to sit in the same chair John had once occupied.

Somehow, I made it through the initial exam, but then came the wait—twenty long minutes—for the doctor to enter and complete her portion. It became a battle between my mind, my heart, and my emotions. Tears, tissues, and frantic fanning of my face—anything to make it stop. Silently, I pleaded with the doctor not to ask about John or offer her condolences. I knew that wouldn’t go well, and an eye exam would quickly become impossible. Thankfully, I pulled myself together, and the doctor was all business. I made it through.

Back down those stairs I went to check in for my next appointment, only to find a crowded waiting room—thirty minutes before my scheduled time. After taking a seat, I immediately knew my emotions were getting the best of me, and the battle to regain control was on. I couldn’t sit still. I stood up, paced, and once again, concentrated on my breathing (4-7-8: inhale through my nose for four counts, hold for seven, exhale for eight… repeat… repeat… repeat). I would attempt to sit, then get back up again—more pacing, more arguing with myself in my head. You should just leave. No, stay. Just get it over with. All of it unfolding with tears right on the edge as I was questioning to myself if this what a panic attack feels like. I’m sure my actions were quite the site to the others around me.

Finally, my name was called, and after being weighed (boo—sedentary January is not a friend to one’s weight), I made it to the exam room. The nurse was kind and engaged me in small talk. As she took my blood pressure, she commented on my necklace and asked if there was meaning behind it. The necklace was a gift from a dear friend, its charm holding three birds—a symbol of my three sons, and of the song Three Little Birds that was sung at John’s celebration of life. I managed to squeak out, “Yes, my sons,” and then the real battle to control my emotions began.

The next thing I heard was, “Do you usually have high blood pressure?” I had been holding my breath, trying not to bawl my eyes out (not recommended while having your blood pressure taken—neither the breath-holding nor the bawling). In a barely audible voice, I told her no, that I was just upset, which promptly opened the floodgates. The poor nurse never saw it coming. My blood pressure read 160/120, but I wasn’t worried—I knew that wasn’t an accurate reflection of my bp. The nurse stayed with me, and as I calmed down, so did my blood pressure.

Another anxiety-filled wait followed. I hadn’t seen my doctor in a long, long time, and I knew emotions would surface. When he opened the door and entered the room, I warned him that I was a hot mess—and that the mess had nothing to do with the reason for my appointment. His response was perfect. “Well,” he said, “let’s talk about all the reasons you’re not here.” And we did. I walked away from that appointment being told that my feelings were appropriate, valid, and understandable.

Plain and simple, we miss John terribly. There are days when I say out loud to Jon, “I can’t believe this is our life.” While I am trying to be grateful, I find myself hating January and the dark cloud it seems to place over my head.

Those prickly thorns of grief have a tight grip on my heart this January. I know I will be okay—we will be okay. John taught us, by his example, how to get through the hard stuff and still be okay. I find myself looking ahead to February. January can’t end soon enough.

Love, Hope and Blessings,
Shelly

Extra Thoughts

I am grateful for my understanding family and friends.

Children’s Minnesota offers a free bereavement service, which Jon and I have found helpful. We had a visit in our home in October, another this month, and another is planned in a few months. These meetings are filled with conversations about John and truly fill our hearts.

I read a book just for entertainment—the first time in such a long while. I even read the whole thing without cheating to peek at the ending early, which is a thing for me!

Jon continues to battle his grief with car projects. None of the three cars has escaped his handiwork, and if the kids stop by and mention any issue – from a headlight to a window that won’t rolldown – you better believe he’s on it!

John would have loved Hockey Day Minnesota – right here in Hastings. This tugged at my heart all weekend. He would also be all over the Olympics that are just around the corner.

A picture of John from September of 2023 – just because. This is how I want to see my boy in my dreams.

John’s story can be told in the molds of these two precious handprints. His/our life before cancer, between cancer, and after—when he passed, and our lives were forever changed.

That tiny handprint from December 2011 tugs at my heart each year as I unpack the ornaments for the Christmas tree. Without fail, I rest my hand over the sweet handprint that once belonged to our five-year-old son. In that moment, I’m carried back to John’s carefree life, to our carefree life—brothers, hockey, and the quiet gift of ordinary days.

I also can’t help but reflect that just four months after receiving this treasured gift, John was diagnosed with Stage IV high-risk neuroblastoma. That little hand—our little boy—had to endure so much… so much.

Back then, just as he did in recent years, John was told what he had to do to get better, and he did it. Not only did he do it all, he did it with a maturity and bravery far beyond his five years. Chemotherapy. Bone marrow biopsies. Scans. Radiation. Surgeries. Daily injections at home. Immunotherapy. A clinical trial. Poke after poke after poke.

John did it all, and those who witnessed it were in awe of his tenacity. Five-year-old John understood there was something in his body that didn’t belong, and he was going to do whatever he was told to do to make it go away. And the cancer did go away and John was declared No Evidence of Disease!

The time in between those two handprints was lighter, though the quiet hum of worry from a previous cancer diagnosis never fully left us. For anyone that has faced a cancer diagnosis, it never does. For the first two years, John had scans every twelve weeks. Then it moved to every six months, and finally to yearly visits at the Children’s Cancer Survivor Program.

Even with that worry always nearby, we were blessed with many years of an active John—enjoying lacrosse, hockey, golf, friends, school, cabin time, and of course, his brothers and family. For several years, life almost felt somewhat normal.

The second handprint, taken after his death, tells me so many stories of our eighteen-year-old son. It reminds me how, in an unexpected instant, John’s life was turned upside down once again, this time by the beast, osteosarcoma. And still, he faced limb salvage surgery and recovery, every therapy and every setback with drive, determination, and a ferocious will to live.

I, too, am reminded of all John endured over the past two years, but at the forefront of my heart are the positive things those hands held. The Xbox controller he spent countless hours playing with his brothers and his friends. The fishing pole he held as he set the hook and reeled in bass from Big McKenzie Lake. The marshmallow goo that was left on his fingers from the campfire smores. John’s most prized possession—his golf clubs—hands gripping tight, hoping for a decent drive, but always steady and consistent hands around the green. The Steve Earle T-shirt he chose at the concert. Handing us money at the Spooner Rodeo because he was the only one carrying cash, and the rodeo was cash only. The countless puzzle pieces his fingers turned this way and that, searching for just the right fit. Fingers deep in the popcorn bucket at the movie theater, and hands covering his eighteen-year-old eyes during the scary scenes. Holding the TV remote, endlessly scrolling to find just the right show for us to watch. The tight grip on the box cutter and the exaggerated swipe as he tried to open a box. My pleas to be careful were met with a calm, confident, “I got it, Mom.” The love those hands gave to his beloved dogs, Bell and Izzy. The gentle pets and the pull of scruff on Bella’s neck to gently direct her to his bedroom.

Mostly, that big guy handprint – where I can lay my own hand inside – reminds me of my strong love and connection with John. I can almost feel his hand wrapped in mine the way it was the last weekend of his life.

John’s handprints remain deeply etched in my heart. These handprints tell a story of love, resilience, and a life lived fully—despite the battles he faced. They remind me that while John’s time here was far too short, the love we shared, the memories we made, and the strength he showed will forever hold us together. And so, each year as I place those ornaments on the tree and press my hand over his tiny print, I am comforted by the knowledge that John’s spirit is always with us—guiding, protecting, and loving as fiercely as he ever did.

Love, Hope and Blessings,
Shelly

Extra Thoughts

Our family is deeply grateful for the time between those handprints. We know those years were precious—years that far too many families facing Stage IV high-risk neuroblastoma never get.

Grief is a beast we continue to face each day. Yet we remain hopeful for the days when it will soften its prickly thorns.

John was looking forward to The World Junior Ice Hockey Championships. We would have been at some of these games.

Before John’s death, he was in the process of purchasing gifts for us. I had suggested writing letters and his quick response was, “I’m not doing that,” – and that was the end of that. We had conversations about what he was going to buy his dad, brothers, Nena and Emma. When he would ask me what I wanted, I would give him the mom sincere response of, “I do not need a gift John, being your mom is all the gift I will ever need.” He scoffed at this, and one day as he was walking down the hall in front of me he said, “Come on Mom, I’ll buy you anything you want.” I then replied that if he was going to insist, I wanted pictures taken with him. John’s quick reply was, “Ok, you better hurry up before my hair falls out.” John was to start a new chemo soon and he wanted pictures with hair. We never had the chance to get those pictures taken as the end came sooner than we could’ve imagined.

John had purchased his dad’s putter before his death, and with John’s money, I purchased the gifts that he and I had discussed – drivers (golf clubs) for Michael and Nena, hunting boots for Jeffrey and a butterfly necklace for Emma. That left me, and I was feeling that I really wanted a ring with his birthstone, a sapphire. I looked at and tried on many beautiful rings, but it wasn’t feeling right. A ring like that would need to be purchased from me and I wanted the ring to truly be from John, and on his budget. I stumbled upon a company in England, Ashes Into Glass and I put an order in for a simple, but beautiful ring. I picked blue for John’s birthstone and yellow gold for the band. The white/gray specks in the ring are John’s ashes. The ring arrived on Christmas Eve day. How perfect was that? This special gift from John makes my heart so happy. A part of an affirmation I say each day is, “… know that my spirit is with you always” Yes it is, and John is always with me on my finger too. 🙂 https://ashesintoglass.com/us/about-us/

If you’ve made it to the bottom of this post – that’s impressive. It seems I am extra wordy this evening.

Much love to you all

The tremendous love I have for John is responsible for the heartbreakingly deep loss I feel. There are days it takes great effort to bring gratitude to the forefront of my mind, as grief is bold, relentless, and even sneaky at times. Grief can literally take my breath away, cause an ache in my chest, and make my body feel as though it is filled with sand, the heaviness making it difficult to move from the couch. Grief can be a feeling of longing, a trickle of tears, or the flood of full blown sobs.

I have heard and read so many metaphors for grief, and they all are very true. Grief is: a beast, a wave, a rollercoaster, a puzzle, a dark tunnel. I envision my grief as a vine, a climbing rose vine to be exact- as John loved the beauty of flowers. This vine is always wrapped around me, reminding me of my forever love and connection to John. There are times that it fits loosely with the thorns barely touching my skin, giving me a reprieve from the heartache of John’s physical absence. Other times it tightens, catching me by surprise with thorns that press into parts of me I thought were beginning to heal. I know there is beauty to be found in this vine with its soft, pastel petals and the sweet fragrance of the roses, however at this time, those tenacious thorns seem to be in charge.

The vine was oddly very loose in the early days after John’s death and leading up to his celebration of life. I think at first I was numb, maybe in denial, and then in “pull it together” mode for his visitation and service. I was so determined to be able to speak at his celebration of life, I think I almost didn’t let myself feel all the emotions that I should have that day. Looking back, I can see I was going through the motions, but had shut down some. Within the next week, that vine had a vice grip on me so tight that it rendered me a complete mess! I spent so many hours on our couch bawling my eyes out, with my sweet husband sitting by my side comforting me to the best of his abilities. He most often would just sit closely, quietly patting my leg, letting me feel all the emotions.

I struggled to recognize this new version of myself. Where had the Shelly gone that stood strongly  by John’s side for the past two years? That version of me had completely vanished as that vine of grief twisted and turned, pulling tighter and tighter.  Even in his own grief, Jon recognized my struggle and was supportive, understanding and so patient with his messy wife.

In the weeks and month that have followed, there are times the vine has loosen a little, and the thorns do not cause such a tense emotional response. During the quiet moments of my days, that vine is sneaky and can give me a quick squeeze, triggering a light stream of tears. Driving easily provokes the vine. If the radio is off, I think too much and when the radio is on, I can find meaning to any song. Almost any song … I have found the Juice Newton’s “Queen of Hearts” and John Fogerty’s “Centerfield” trigger zero emotional response, hence they are blasted on the radio my entire 1 mile ride to work and again back home. The vine also likes to show it’s thorns during my lunch and prep breaks at school, really any time in the day that my mind and body have an opportunity to be at rest.

In mid October, I returned to my classroom and 5th grade students. While at the time I was anxious about stepping back into school, it has proven to be very healing for me. My wonderful sub did an excellent job of setting up routines with my groups of students and she also set me us for success for my return (Thank you Mariah!). I work with amazing people and I feel totally supported and loved at school. Students, past and present, have been so sweet with their gifts of words, cards and hugs. I will always remember running into a former student that is now in college, and how he took me in his arms and gave me a huge bear hug and whispered to me, “It’s always good to see you Mrs. Gegen. I am so sorry about John.” This wasn’t a quick hug, but a loving embrace and he held on. When he could have turned away to avoid an interaction with me, he came towards me – which is difficult for some adults to do. Before I was back at school, I ran into another former student and she also walked right up to me and said, “We miss you at school. I am sorry about your son,” and she gave me the sweetest hug. I have been so fortunate to have had experiences like these with many students. Of course, there have been a few awkward moments as well – children are, after all, curious and  wonderfully honest. The grief vine, for the most part, behaves pretty well at school, at times gently tightening, but quickly releasing and allowing me to go on with my day.

That very same vine, when I’m at home, can squeeze the living daylights right out of me at a moments notice. It takes so little – a slip of paper (like the day I came across John’s very first PET scan results showing that the cancer was only in the bone of his leg- we later learned that wasn’t true. If only it had been just the leg, his leg was good), a sporting event on TV, a walk into his closet, a winter hat, a bag of unpopped popcorn, a trailer for a movie…. truly anything. At home, grief and that dang vine are making the simplest tasks feel overwhelming, while also zapping my strength and turning me into the most unmotivated bump on a log EVER! I’m working on it one day at a time…facing each day one at a time.

I knew this grief journey was/is not one I can manage on my own. Right out of the gate, I had Jon and I enrolled in a Grief group. That didn’t go as planned because after the first meeting I was overly concerned with another member (shocking, I know…). I needed her phone number because she was in desperate need of a friend, and I could be that friend. I was trying to convince Jon of this and he adamantly disagreed, reminding me that we are there for us and there is a leader to address concerns with the other member. Soon after, a member of Children’s Bereavement team came out for an in home visit. When she learned that we were in a grief group, her suggestion was that we are not in a place to be taking on the grief of others. I do believe my husband breathed a big sigh of relief when I agreed to pause that experience. I may revisit this opportunity for healing down the road.

I have both purchased and been gifted books on grief, pouring over them in an effort to learn how to navigate life without our sweet boy. Sometimes, my husband is lucky enough to hear me read a chapter or two to him at bedtime. He has been a good sport, but he also probably wouldn’t mind me getting back to my habit of staying up late so he can go to bed in peace.

One of the most helpful tools in this grief journey – and dealing with this nasty vine -has been the support I’ve found through the person I’m seeing via my schools Employee Assistance program. Time away from work has not been needed, as he comes to me during my prep. This itself has been a gift, as I do not have one second of any type of leave until the beginning of the next school year. We have had many heartfelt and meaningful discussions during our sessions. My eyes were opened to the reason that school is going well- because there I find purpose and meaning. At home, all my purpose, meaning, and caregiving were all wrapped up in John, just as it needed to be. I would have that no other way. As I navigate this grief journey, I’m floundering a little (some days a lot) as I work on discovering my purpose and meaning outside of school.

The healing activity that may be helping me the most in managing that invasive climbing rose vine of grief is keeping a journal – putting my thoughts and heart on to a page. This simple act of writing to John – sharing my deepest thoughts, worries, emotions, or even the mundane day to day activities (there are a lot of sports and hunting updates) gives me a place to embrace the quiet in a calming manner and to connect with John.

A few weeks ago Jon, Jeffrey, Emma and I attended an event put on by the O’Connell Family Funeral Home – The Grief Journey Through the Holidays. We are hoping to take some of the insight shared that evening with us as our family faces the coming weeks, finding ways to honor John as we face this first holiday season.

I understand that because I love John so deeply and completely, the prickly thorns of the climbing rose vine will always be a part of me. Still, I look forward to the day when those thorns more often remind me of the love we shared, rather than the life that was lost- hoping in time, healing will come. I know I have a long, long way to go before I get there.

Love, Hope and Blessings

Shelly

Wow! It has been a long time since I have posted! Part of the reason is that most of my previous writing took place in the wee hours of the night. This worked best for me as the house was quiet and it was an ideal time for me to reflect and piece my thoughts together. The fact that I couldn’t sleep also contributed to my burning the midnight oil as I wrote. Now, I’m going to bed at a much more healthier time (still room for improvement there) and during the waking hours our home is full of boisterous boys and all that comes with that. Is that awesome or what?!

This morning the house is quiet. Michael is away at college, Jon and Jeffrey took off for a weekend of duck hunting, and John is  asleep in his bed. So I write…

Last night Hastings High School participated in a Tackle Cancer Event (Big thank you to Angie McLay and her family for organizing this!). Pre game, children in our community were honored and John was one of them. Man…there I sat trying to keep it together. Seeing John on the field so healthy, confident…loving every minute of the night fills me with such gratitude. Gratitude for his health, my family, our community…for each and every day. Every single ordinary, blessed day!

John Jospeh is rocking life! He played hockey and lacrosse this summer, is loving 5th grade (The best part of his mom’s work days is seeing him in the halls!), is playing hockey again this fall and he just celebrated his 11th birthday! This October he will be 5 years out of treatment and will have his last appointment with Dr. Rawwas and will then move on to the STAR Clinic.   – STAR Clinic (surveillance and testing after recovery) – The STAR Clinic team helps patients along their survivorship journey after the recovery and wellness phase is completed. This includes yearly clinic visits, nutrition and exercise plans, and well-care education to ensure patients are equipped to embrace life after cancer therapy. –   This will be a great day, but also a sad one because John’s care with Dr. Rawwas will be complete. (There goes my grateful heart again.) Dr. Rawwas has said he will stop in and say hi during John’s annual visits. I’m holding him to that!

5 years ago today receiving high dose chemo prior to his stem cell transplant

Last Night!

HHS Tackle Cancer

HHS Tackle Cancer

Eleven!!

Together again! 5th Grade

Our summer was great from my mom’s perspective. All the boys were home, Jon and I were able to wrangle everyone on a road trip out west with our friends, we were able to spend time at my parent’s cabin in Spooner, and we spent time boating on the river. I loved every minute of our summer!

Big guys update:

Michael is in his junior year at UW-Madison. He has moved into a different house and has settled back into his life at college. (I think that didn’t take him too long!) I believe he has declared his majors as Finance and Economics. (I loved having him home this summer!)

Jeffrey: Senior year!! I know this will go by so fast! Jeffrey was a life guard at the pool this summer. This was a great job for him and John enjoyed going swimming there when Jeffrey was working.  Jeffrey has caught the hunting bug, so now I have 2 of them to deal with at home. I wish Rylee luck with surviving Jeffrey’s hunting talk this fall!

Dad and Mom – Blessed! We both have jobs and colleagues we enjoy, our boys are happy and healthy, and we still enjoy spending time together (Most Days – Ha!).

Ordinary days = Extraordinary Life for the Gegen5

Love, Hope,  & Blessings… each and every day!

Shelly

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I am given little reminders almost daily with pictures on my Timehop app like this one, how blessed my life is. I sit her typing this post on a crisp Saturday morning, with the sun shining on the back patio with 1 big sized boy sleeping away at the college he dreamed of going to, 1 middle sized boy, who just happens to now be the tallest Gegen in our family, sleeping soundly down the hall, and 1 smaller sized Gegen boy asleep in his bed with his sheets pulled up around his neck like he always does. Oh…and there is the oldest Gegen guy and the 2 black labs tooling around the house this morning as well. What a blessed morning on Jefferson Street…normal, ordinary…perfectly, perfect. My life is blessed!

My life, our lives, could be so much different. We are all here…healthy, happy and with dreams for our futures. We are allowing ourselves to dream and the events of this past week are not going to change that one bit. The outcome of the election compares nothing to the hell our family has had to live, one thankfully most of you will never experience.  We have learned as a family, together we can face anything, that there is always hope. You all have taught us that, even in the times we thought were the darkest and we couldn’t possibly get through, we could and did, with the love and grace of our families, our friends, our community and even strangers. I choose to move forward in life with positivity, gratitude, respect, hope, kindness, and with that good ‘ol lesson from childhood…I’m taking the high road.

The future…I don’t know what the future holds for my family, me, you or your family…none of us can know or can control what tomorrow may bring, however, I can control my actions, my words, the examples I’m setting from my children, my students,  and my friends. I am choosing to live each day like the gift that it is.

Love, Hope and Blessings to you all!

Tomorrow is National Wear Red Day – A day to show support for women’s heart health.

Our school district has been encouraging the staff and students to wear red this Friday in support of National Wear Red Day and it finally hit me…”Hey, I’m one of those women.”. With everything that has been going on with the Gegens these past few years, I almost forgot! It is mind boggling for me to think that my heart health crisis my family faced was already 9 years ago (a little more). Where at one time my heart had been constantly on my mind…with the journey our family has been on with John these past almost 4 years, it has taken a back burner. 

John was born on September 16, 2006. Nine days later I was diagnosed with Peripartum Cardiomyopathy (heart failure due to pregnancy), taken by ambulance to United Hospital and admitted into cardiac intensive care. I had never heard of peripartum cardiomyopathy. Here is the American Heart Associations information on the condition:

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What is peripartum cardiomyopathy?  

Peripartum cardiomyopathy (PPCM), also known as postpartum cardiomyopathy, is an uncommon form of heart failure that happens during the last month of pregnancy or up to five months after giving birth. Cardiomyopathy literally means heart muscle disease.

PPCM is a dilated form of the condition, which means the heart chambers enlarge and the muscle weakens. This causes a decrease in the percentage of blood ejected from the left ventricle of the heart with each contraction. That leads to less blood flow and the heart is no longer able to meet the demands of the body’s organs for oxygen, affecting the lungs, liver, and other body systems.

PPCM is rare in the United States, Canada, and Europe. About 1,000 to 1,300 women develop the condition in the U.S. each year. In some countries, PPCM is much more common and may be related to differences in diet, lifestyle, other medical conditions or genetics.

How is it diagnosed?
PPCM may be difficult to detect because symptoms of heart failure can mimic those of third trimester pregnancy, such as swelling in the feet and legs, and some shortness of breath. More extreme cases feature severe shortness of breath and prolonged swelling after delivery.

During a physical exam, doctors will look for signs of fluid in the lungs. A stethoscope will be used to listen for lung crackles, a rapid heart rate, or abnormal heart sounds. An echocardiogram can detect the cardiomyopathy by showing the diminished functioning of the heart.

PPCM is diagnosed when the following three criteria are met:

1. Heart failure develops in the last month of pregnancy or within 5 months of delivery.
2. Heart pumping function is reduced, with an ejection fraction (EF) less than 45% (typically measured by an echocardiogram). EF is how much blood the left ventricle pumps out with each contraction. A normal EF can be between 55 and 70.
3. No other cause for heart failure with reduced EF can be found.

Laboratory blood tests are a standard part of the evaluation. This includes tests to assess kidney, liver and thyroid function; tests to assess electrolytes, including sodium and potassium; and a complete blood count to look for anemia or evidence of infection. In addition, markers of cardiac injury and stress can be used to assess level of risk.

Symptoms of the condition include:

• Fatigue
• Feeling of heart racing or skipping beats (palpitations)
• Increased nighttime urination (nocturia)
• Shortness of breath with activity and when lying flat
• Swelling of the ankles
• Swollen neck veins
• Low blood pressure, or it may drop when standing up.

The severity of symptoms in patients with PPCM can be classified by the New York Heart Association system:

Class I – Disease with no symptoms
Class II – Mild symptoms/effect on function or symptoms only with extreme exertion
Class III – Symptoms with minimal exertion
Class IV – Symptoms at rest

What are the causes?
The underlying cause is unclear. Heart biopsies in some cases show women have inflammation in the heart muscle. This may be because of prior viral illness or abnormal immune response. Other potential causes include poor nutrition, coronary artery spasm, small-vessel disease, and defective antioxidant defenses. Genetics may also play a role.

Initially thought to be more common in women older than 30, PPCM has since been reported across a wide range of age groups. Risk factors include:

• Obesity
• History of cardiac disorders, such as myocarditis (inflammation of the heart muscle)
• Use of certain medications
• Smoking
• Alcoholism
• Multiple pregnancies
• African-American descent
• Poor nourishment

How can PPCM be treated? 
The objective of peripartum cardiomyopathy treatment is to keep extra fluid from collecting in the lungs and to help the heart recover as fully as possible. Many women recover normal heart function or stabilize on medicines. Some progress to severe heart failure requiring mechanical support or heart transplantation.

There are several classes of medications a physician can prescribe to treat symptoms, with variations that are safer for women who are breastfeeding.

• Angiotensin converting enzyme, or ACE, inhibitors – Help the heart work more efficiently
• Beta blockers – Cause the heart to beat more slowly so it has recovery time
• Diuretics – Reduce fluid retention
• Digitalis – Derived from the foxglove plant, it has been used for more than 200 years to treat heart failure. Digitalis strengthens the pumping ability of the heart
• Anticoagulants – To help thin the blood. Patients with PPCM are at increased risk of developing blood clots, especially if the EF is very low.

Doctors may recommend a low-salt diet, fluid restrictions, or daily weighing. A weight gain of 3 to 4 pounds or more over a day or two may signal a fluid buildup.

Women who smoke and drink alcohol will be advised to stop, since these habits may make the symptoms worse.

A heart biopsy may help determine if the underlying cause of cardiomyopathy is a heart muscle infection (myocarditis). However, this procedure is uncommon.

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I was experiencing almost all the symptoms listed during my pregnancy. What makes it so difficult is that they are similar to many pregnancy symptoms. As my symptoms worsened, I contributed that to the fact that I was 36/37 when I was pregnant with John, ten years older than when I was pregnant with Michael.

By the time I was admitted to the hospital I was at Class IV – having symptoms at rest. My ejection fraction was at 15%, where a healthy heart is around 60%. So there we were with a brand new baby and two little boys at home, scared to death, with doctors talking to us about life expectancy and a possible heart transplant down the road if my heart didn’t heal. In those first few days I remember agonizing over the possibility of Jon having to raise our three boys without me and I felt tremendous guilt.

There was a whirl-wind of information and a lot of medication. I remember being in that bed, my infant son and 3 boys at home, feeling so weak, so sad, with ice packs on my chest too because I was told that I couldn’t breastfeed or even pump because of my medication. The blood pressure machine would go off every 15 minutes and during that time, I would do the slow deep breathing exercises I learned in childbirth class all those years earlier and try to “will” my blood pressure down.

I was at United for around 7 days and sent home with all my medication, homework of cardio rehab, and feeling overwhelmed by my unknown future.I remember stopping at Target on the way home (Never to sick for a Target run!) and being so weak I felt like I was walking at a slant.

Not surprisingly, our wonderful families, friends and community rallied around us and carried us through.(This seems to be a theme we are all very grateful and blessed to have.) The short version of my healing is that I was on medication for about 1 1/2 years, was weaned off of meds and I GRADUATED from the heart clinic, which I am told is very rare. My ejection fraction is back up in the normal range and I am considered to be 100% healed!

Tomorrow I am wearing red, Jon is wearing red, I think I can get Jeffrey to, and I need to get a hold of Michael. John…he’s fighting me. I set out a very nice red sweater and he told me, “There is no way I am wearing that thing! I will look like a pilgrim!”. He wants to wear his Wild jersey, which is red, but it just so happens he is supposed to wear something a little nice for his choir concert tomorrow. To him a Wild jersey is WAY nicer that a scratchy ol’ red sweater.

I hope to see a lot of red tomorrow!!

Hey – a side note: I thought I was 47, but in writing this blog tonight I realized I am 46! Oh Happy Day!!

John faced the past two days with a casualness and calm that I am in total envy of. We rejoice with the news that his scans are all good once again. Dr. Raawas informed us that following COG (Children’s Oncology Group) recommendations, that John will next be seen in 6 months for scans and a physical. After that it will just by bi-yearly urine tests that test for cancer markers. He reassured us that if we ever have concerns that we can bring John in, they can do urine tests, Children’s is there for us. It was hugs all around as we left today…and a few tears.

While talking to my parents this evening they asked me, based on my last post, if going into scans this time was extra difficult. I told them no, those feelings are there every single time as we head into scans.(These feelings seem pretty mutual among the other cancer parents I know as well.) I just put it out there for everyone to see this time.  I worry when I do put “it” all out there because I don’t want to upset anyone, but those feelings are my reality.

Our plan had been to get through scans and hit the road for Madison to visit Michael, watch him play a little lacrosse, to celebrate good news. Well….when we got home on Thursday from Children’s John had pink cheeks, a runny nose and a cough. Not so perfect timing with scans. We decided we would not leave on Friday like we originally planned, but to wait and see how John was this morning. He seemed much better and he did have an exam that day, but no throat culture as his throat looked ok.  We now were planning on leaving Saturday morning. Around 7 tonight John came up to me and told me he had a headache. He never has a headache so I decided we better run in for a strep test. We had to go to Woodbury and he tested positive right away. There is a much longer version of this story here, but the doctor and I were not seeing eye to eye on what kind of medicine……and too bad for him I hadn’t eaten a thing since 11AM and I had found my “voice” for advocating for my son a long time ago. When we finally left and we were walking out John told me that he didn’t think the doctor liked me. My response, “Ya, well….you don’t mess with John Gegen’s mother and if this isn’t the right prescription when I get to the pharmacy, we’re calling and getting the one I asked for.” It wasn’t the correct one. I went home with what I had requested, with what has worked for John the past two times after first having to go through 10 days of a drug that didn’t work for him.

So we are not going to Madison. John was heartbroken and angry. I was/am bummed and while part of me wants to just pack up and go anyway, I know that’s not the right thing to do. While it is disappointing, I know we have so much about today to be thankful for and we will plan a different weekend for our visit.

This week has been exhausting and I can’t wait to climb into bed! Thank you again for all your support, prayers and kind words. Team John has always Rocked!

The Gegens will keep on keeping on…taking one day at a time….and try to look forward with hope and not in our past at our fears (Wish me luck with the last one! 😉 )

With my heart full of GRATITUDE…Love, Hope and Blessings,

Shelly