A Mother Lives On

 

Natalie

 

 

My next story is a woman by the name of Natalie.  Natalie is a wife and a mother of two girls. Her story not only shows how an organ donor can help save a family from losing a mother but also help to keep it together.

Due to heart failure, Natalie received a heart transplant in 2010. Her battle to live started at the age of 23. Natalie’s heart transplant helped her to become an integral part of her family and feel more like a mom and wife again.

Natalie has the same vision with her story as I have with mine, which is to help bring the awareness of organ donation and for other to become an Organ Donor. Please take the time and read Natalie journey through her transplant.

Who would have thought that a young girl who does not like fast food, is not much of a drinker (this being the reason why my husband calls me a “cheap date”), exercises can develop heart failure at the age of 23.

Hard for many to imagine that heart failure can affect you at such a young age and it sure was hard for me to come to terms when my cardiologist entered my hospital room and announced I was suffering from heart failure.

I got married to the love of my life.  We decided to start a family fairly soon after our wedding.  I was 23 years old and blissfully happy.  I got pregnant and my husband and I were ecstatic.  Four months into my pregnancy, I was faced with various health issues. I now realize these symptoms were the beginning of my heart weakening.

Back then, nothing alarmed my gynecologist.  If I complained about being tired, he said pregnant woman are often tired.  If I complained about coughing, his answer was that this was simply a pregnancy cough.  Six months into the pregnancy, a routine gynecologist visit landed me in the hospital.  My daughter decided to make an appearance into this world much sooner than anticipated.  My miracle baby was born 3 months premature; luckily for us has grown up into a healthy young girl.

Since all seemed normal, doctors felt comfortable discharging me a few weeks after my daughter was born.  My daughter was still in the Neo Natal Intensive Care unit.  I was totally exhausted at home. After a few days later my husband returned to work.  Upon his return from work, he came to see me in our bedroom.  That was the room my whole day was spent in for the past week.  He noticed my leg was double its size.  He rushed me to the hospital once again and it did not take long for doctors to tell me this was a blood clot. Standard next step to a blood clot is to make sure the heart is functioning properly.  And shortly after, my next visit was not by an emergency doctor but rather a cardiologist informing me that my heart was extremely weak, was not pumping well and the term I was diagnosed with Post-Partum Cardiomyopathy.  Yikes.  What a word.  It seems so mundane and simple to me now but back then, heart failure, heart not pumping well in a healthy 23-year-old.   My pregnancy caused my heart to get weak.  And those symptoms I was having only 4 months into pregnancy were actually a sign.

I was placed on a heart transplant list 1 month after having given birth.  My mind refused to believe this was where we stood.  I strongly believed that with all those pills I was popping in my mouth, with all those plugs attached to, I truly believed my heart’s strength would come back.  After all, I am only 23 years old, healthy, young mom… my body is bound to bounce back.  Had an echo done a couple of weeks later and my heart function was not increasing but rather declining.

Young heart recipients would come into my hospital room so they can show me the life we lead after a transplant is such a beautiful one.  Instead, I simply closed the door in their face and said “don’t waste your time” I am not taking that path.  My body or I should say heart will bounce back.  Those positive vibes I was sending to my body worked.  Despite having had to go through surgery for a dermoid cyst removal (size of a grapefruit) in my abdomen, 2 days after the surgery my own heart started to improve.  And 2 weeks later I had crossed that famous Ejection Fraction percentage (EF measures the pumping of the heart) and taken off the transplant list.  Was my heart come back to normal, far from it?

It was pumping better but was definitely not a normal heart.  The heart muscle was weak.  For the next 10 years, I lived with heart failure yet was able to carry on a “fairly” normal life.  We planned 1 event a weekend; I took a nap every single day.  2 years after, my husband and I decided to adopt a child from Armenia and our family was complete with 2 wonderful girls.  Never did I expect that my young girls would help me as much as they did during those 10 years of living with heart failure.

Sometimes their mom would be too weak to get herself a glass of water or my meds and my daughters would bring them to me.   Mom’s reoccurring hospitalizations ended up not scaring them.  A lot of ups and downs throughout those 10 years.  Blood work, irregular heart rhythms’, cardiologist visit and emergency room visits were a standard part of our lives.  My husband, my rock, provided for me physically and most importantly emotionally.  He kept me strong throughout those 10 years.  He would return from work, prepare supper, and look at the girls’ homework since me spending time with them for 3 hours after school was just enough that it was time to take it easy after that.  Sometimes I had the energy to prepare supper other times, would rather stay in bed.

I would have loved to clean up the kitchen after supper much more often than I actually did.  That would have meant I don’t get tired quickly, that would have meant I have the energy to do what average moms, wives do.  But my condition was unique and despite what many think that they would have loved to take a break from house chores, I actually preferred not to.  I was not living a normal life.  It was my husband and my 2 girls who allowed me to live these 10 years of a decent life despite having heart failure.  My mom and dad did take months off from work to come and help us since we lived 15 hours away from one another.  But the only people I depended on day after day over 10 years of my life were my 2 girls and my rock.

My heart took a sudden turn 10 years later.  I suffered a near fatal heart block.  My husband got back from grocery shopping.  Came to see me in bed and could not feel a pulse.  The blood pressure machine was unable to bring up any numbers.  He rushed me to the hospital.  After that, I have no clue what happened.  My husband does but I don’t want to know.  I do know that it most probably was like a scene in Grey’s Academy.  A patient being wheeled in, everyone drops what they are doing to come and save this 32-year-old young girls heart.  The tubes, the heart monitors, the gloves, the mask.  It’s no surprise that doctor and emergency related shows on TV are shows I no longer watch.  It was that moment that my husband thought he was losing me.

But I was not ready to leave this Earth just yet.  I woke up from an induced coma 2 weeks later. Drugged and disillusioned.  My cardiologist came into my room and said that I had no choice but to get a defibrillator put in me.  A few hours later he came back and said the results of my ultrasound showed that my mitral valve needed to be replaced.  They wheeled me into the OR for open heart surgery.  They put me down.  When I woke up, I turned to my husband and said: “This is how easy open heart surgery is.  I am not feeling any pain”.  Just then, my cardiologist walked in and said that they could not do the surgery because they realized my heart would not have survived it.  So that’s why I wasn’t feeling anything.  They did eventually put the defibrillator in to be on the safe side.

Heart transplant terms were mentioned again by my doctor but I still refused to believe I needed one.  I told him, 10 years ago, I refused to believe it was my only option and I was right.  Meds fixed it.  Give it some time I told him.  1 week, 2 weeks, 1 month, 2 months and I still believed I was going to get better.  My husband got a job transfer to Toronto.  We were gladly going to take it since it meant being closer to the family.  We came here on a 1-week house hunting trip yet the “we” turned into my husband being the one who went from house to house.  I had no energy.  Despite asking for our hotel room to be as close as possible to the elevator, walking 3 steps to getting into the elevators felt like I just ran a marathon.

I still remember one day an individual wished me congratulations and asked when the baby was due.  My stomach was so swollen that it looked like I was about ready to give birth.  When one’s heart does not pump well, water accumulates and that’s exactly the effect it has.  It was during this trip that I realized that I had reached rock bottom. It was not going to get better.  I had reached the point where I knew a heart transplant was inevitable.  After having taken that decision I felt like a huge load was lifted off my back.  That backpack I was holding for 10 years of my life filled with bricks… well, I was finally able to put it down.  My cardiologist from the US faxed over my files or should I say binders to Toronto and the process began.

When one decides they want a transplant that doesn’t mean you are in the clear.  Tests and tests have to get done to ensure the rest of your body s in good shape.  Organs are so precious and we have less than what we need that they can’t simply give one to someone who in essence will still not be able to survive due to other medical issues they might have.  So that call you get from the transplant coordinator saying they accepted you, you are on the list allows you to believe that that second chance at life might actually come true.  Yet your life is in someone else’s hands.  Not your doctors, but donor families.  I was too sick, to wait at home and they admitted me into Intensive Care Unit.

I still remember my cardiologist rolling up a chair next to my bed and saying.  “Make this your home until you get your new heart”.  On one hand, she is saying until, on the other hand, one never knows if that day will come.  But you want to believe you will not be part of those statistics that do not make it.  You believe you will not be those 1 in 3 people who die every day waiting for an organ.  My health deteriorated.  I disconnect with my life, my girls, my family since I had to keep whatever little energy I had to myself to help me fight this battle.

Waiting was the hardest part of my journey.  I did not talk to my kids for 3 months, I did not call them.  Watching TV could technically be an easy distraction yet watching for 5 min. put me out of breath.  My mom replaced all my hospital meals with homemade food and my husband would bring them to me.  He went to work, came to see me, fed me, brushed my teeth, tucked me in bed and we always hoped that night would be our lucky night.  A new heart would come.  Day after day, that’s all we hoped.

The more you wait, the sicker you could become and so many don’t get to see that light at the end of the dark tunnel.  I walked in that dark tunnel day after day hoping to see the light.  And one night, in the middle of the night a doctor came to my room.  I looked at him as he was wearing a surgical head bandana.  I talked to him in a rude way saying you are probably here to prescribe a medication because of my odd heart rhythms.  He said no.  We have a heart for you.

That is when I saw the light at the end of the tunnel.

9 days later I was discharged from hospital walking without a walker.  It did not take long for me to start being a mom and a wife, a complete one.  I woke up early and prepared breakfast for everyone in my family.  I had the energy to continue and make lunches for my girls and husband.  I no longer needed to take a nap every day, something I did for 10 years of my life.  I was able to finally sleep on my back rather than sleep sitting since someone who suffers from heart failure coughs when they sleep on their back.

One and a half years later, I biked 25 km. to raise funds for the Heart and Stroke Foundation.  Last year, I biked 40km. and this year my goal is 50km.  I have never lived like this before.  Never had this much energy and all this thanks to my donor family.  They could not save the person they loved lying right in front of them but yet had the courage to save the life of a complete stranger (mine).  I owe my life to them.  They allowed my sister to still have a sister to talk to.  They allowed my parents to still have their daughter.  They allowed my kids to have a mom, they allowed my husband and I to celebrate our 15 year anniversary together.  Thank you to all donor families.  Hope my story changes someone’s mind.

Become an Organ Donor

Natalie and her family