Lisa DeGrave's Story

20 min read

As a single Mom of two beautiful daughters, I took a leap, and went to nursing school.  I went down to part-time hours at my office job for the local ob clinic in which I had been working for the previous five years.  I remember sitting in orientation, shaking like a leaf.  I wasn’t a spring chicken, I had responsibilities, I had bills to pay and there were only so many hours in each day.  I remember the scare tactics….kind of like when you have your first day at boot camp.  Specifically I remember a tough-looking nursing instructor who said, “For the next two years, don’t even bother planning a vacation, getting married, or (God forbid) getting pregnant.”  She continued on telling us how nursing school would consume every part of us.  Was I scared?  Yes, because I had two daughters that I still had to be a mother to.  Was I confident I would get through it? Yes, because I had two daughters I had to be an example for.  I wanted to teach them about hard work and sacrifice.  I wasn’t worried that it would take time away from them.  I know kids can be resilient. I knew that if they saw how hard I worked I could remind them daily how important education was and how much sacrifice I had made to give them a nice life and every time I had to count on someone to help me with the girls, I would make them know that if I had gone to college before I had children it wouldn’t be like this.  I wanted them to become strong, independent women.  And that part about going on vacation was no problem.  I hadn’t any money for extras like that.  Although I was dating a great guy, I had not even given the thought to marriage or more children yet.  My view on more children was that I was happy with my girls and that if one day I the opportunity arose, I would then discuss it with him.  But definitely not for the next two years.  That was August of 2009.

August, September and October came and went.  That October, amid all odds (he had a vasectomy prior and I was on birth control), I found myself pregnant.  After getting over the shock of it, Jeff and I embraced it and decided to get through it together.  I continued to work hard in school, at my clinicals, take care of my girls.  Jeff and his family were a huge help and so was my family.  It wasn’t until about April that I started noticing some things that just weren’t right.  It had been a long time since I had my last baby, maybe I just didn’t remember it right.  I certainly don’t want to complain about it to my doctor.  I hear how those nurses laugh at pregnant women behind their back when they complain about weight gain and exhaustion and swelling…  “doesn’t this chick realize she IS pregnant?”  I worked with all of those nurses.  I wasn’t going to complain.

I remember several times during April when I was sitting alone in the quiet that it felt like my heart was racing, not sure why I didn’t think much of it.  A couple of times in church I broke out in a sweat, I was lightheaded and had to sit down.  I thought maybe it was my blood sugar or something because I didn’t eat something before church.  I was soooo thirsty.  I am not a water drinker.  I hate plain water.  I couldn’t stop drinking water.  The more ice the better.  I went to the bathroom often but only went small amounts.  I watched my ankles get larger (after all, I was pregnant and I previously had some problems with my veins which sometimes caused swelling).  And I was gaining weight!  The thing was that I was always hungry!  I’d make something, sit down to eat it, eat a bite or two and would be so uncomfortably full.  I was always so bloated.  When I layed to go to sleep I sometimes felt short of breath but I was thinking maybe it was just my huge baby’s position.  I woke up a few times gasping for air.  I thought it was a nightmare.  By week 35 I was seeing my ob weekly.  He noticed the weight gain and all my symptoms but was a bit perplexed by them.  My blood pressure was always in normal range so all he could say was that this was normal pregnancy symptoms.  By week 37 my weight showed a gain of 9 pounds in a week and I could hardly eat.  I was so uncomfortable, can’t he get this big baby out of me?  I didn’t want to have a 12 pound baby.  My ob suggested getting an amnio to see if baby’s lungs were developed enough to induce.  I went the next day for results and the answer was “no, the numbers aren’t high enough yet”.  My ob did an exam and “stripped my membranes” to help me out a bit.  Well…it helped.  I started contractions within the hour.  By that evening I was in the hospital in labor.  Keep in mind, my previous 2 pregnancies were very normal vaginal births.  I had no worries.  My blood pressure kept going on the low side so they kept making me lay flat to bring it back to normal.  Every time I laid flat I was very uncomfortable because it was hard to breathe.  They kept hanging bags of fluids and pitocin and I just wouldn’t dilate past 6 cm.  It was finally decided after 24 hours to do an emergency c-section.

Within the hour, our beautiful son Jaxon was born.  I don’t know why some women prefer csections because mine was one of the most traumatic experiences of my life.  Jaxon was 3 weeks early and weighed in at 9lbs 13 oz.  He was a huge baby.  I stayed 4 days in the hospital with Jaxon.  They were going to let me go home at 3 days but I begged for that last day.  I felt overly weak.  I thought I was having nightmares because I kept waking up gasping for air.  Why did I not tell the doctors or nurses that this kept happening?  I had no idea.  I was so very tired.  I know, I just delivered right?

Finally we go home.  That afternoon I felt short of breath and for some reason I felt if I just went to bed I would be fine.  When Jeff’s mother woke me for dinner, I was still short of breath.  I ate dinner and went back to bed.  I would only wake to nurse Jaxon.  The very next morning, I nursed Jaxon early and layed in the bed to marvel at our new son.  Jeff and I just laid there in the quiet with him.  As I laid my head down I could hear it, the “death rattle”.  We learned this term in nursing school.  I had also heard it in my grandmother when she was dying and her lungs were filling with fluid.  I was still in denial.  I thought, “you know, I was at that hospital for five days, I bet I got some kind of upper respiratory infection”.  I thought maybe if I took a hot shower that would help.  I could hardly stand up in the shower.  I was so light headed in the heat and my heart was racing.  I yelled for Jeff that he had to bring me in, that something was definitely wrong.

I remember still feeling like it wasn’t a life or death emergency.  It seemed like everything was in slow motion.  We packed up the older girls and brought them to Jeff’s sister.  We had our little bundle with us in his infant seat, I checked in to the E.R. and was immediately hooked up to a bunch of wires.  CAT scans and tests, oxygen, iv pain meds and diuretics.  Suddenly I am off to the bathroom letting go of ungodly amounts of fluids.  I am admitted.  Still I am in some sort of denial.  They schedule me for a cardiac cath the next morning.  Meanwhile, I am trying to nurse my new son, pump milk for him and just plain care for him.  Thank goodness for Jeff.  He arranged for a nursery crib to come down to my room from the ob floor.  He stayed there with Jaxon the entire time.

The first night, a nurse came in to educate me on Congestive Heart Failure.  She pulled out a folder that said “living with CHF”.  She was educating me on diet and what to report to my doctor, etc…  I remember being such a snot.  I told her, “I go to nursing school, I know you have to tell me this, but when I leave I won’t have CHF so I won’t need to know all this stuff.  They are still trying to find out what is wrong with me.”  That poor girl.    There is nothing like the feeling of kissing your newborn son, missing your two daughters while being wheeled in to the operating room to have the heart cath done.  No pain meds or nothing to calm me.  Does anyone remember that I am a 35 year-old woman with a newborn and young children??? The surgical tech did his best to calm me.  He played the Beatles for me and I remember clearly being played “All you need is Love”.  I listened to every lyric.  It was profound to me for some reason.   Awake the entire time, I cried the whole time and felt every square inch of that procedure…the lead traveling up my groin into my heart and when they removed it the heat as they pulled it out.  My arteries are all clear.  Not a bit of blockage.  This means I have a healthy heart, right?  Nope.  This means all other dxs are ruled out and I have a disease called Post-Partum Cardiomyopathy (PPCM).  I am wheeled back to the room and told to hold still I think it was three hours.  Lay flat.  My mom, my Jeff and even the Deacon from church stopped by.  I still remember that cramp in my sciatic which I am sure was from sitting in a hospital now for almost an entire week.  We prayed and they did their best to keep my mind off holding so still.

It was confirmed.  I had PPCM.  Now what?  When Fall comes, I start my second year of nursing school.  What does this mean for me??? Now I have a new baby, two daughters to take care of and a serious heart condition.  How am I going to go back to school?  I would be fine.  I always figure things out.  I was going to be better for then anyway.  At least that is what I kept telling myself.   Upon discharge, I had lost something around 43 pounds from when I was admitted 3 days earlier.

Those catchers in the toilets…I overflowed them every time I went to the bathroom.  It was often.  I had to stop breastfeeding.  The medications were bad for Jaxon.  I had a die hard lactation nurse trying to push my doctors to give me meds that were safe so I could keep nursing and pumping.  So now I have to fight with her…really?  Give me the medicines that are going to work the best to make me better for my son.  Better he drink formula and I be alive to feed it to him.  My ejection fraction was 10-15%.  A normal healthy ef is 60-65%.  The doctor told me had I waited much longer, I wouldn’t be here to talk about it.

The next few months are a bit of a blur.  I know that Jeff took an extended amount of time off from work to help take care of the kids and to take care of me.  I had to limit fluids and watch my sodium like a hawk.  I remember all these kind people bringing meals to us to help out, but I couldn’t eat them because they were mostly cassaroles made with cream soups that were loaded with salt.  I was taking, I think 9 or 10 pills every morning and I think 4 at night.  I cried every day because even the smallest chore around the house exhausted me.  If I got up too fast from a chair, I would get light-headed and lose my balance.  When Jeff was away, he had others to come help me with the kids.  I had to stay in the house most of the summer because the weather was so hot and humid, I couldn’t breathe well outdoors.  The heat would also make me swell more than normal.  I couldn’t have more than 64 oz of liquids per day and that included any food that was liquid like ice cream or soups.  Even though I wasn’t a water fan, it is very difficult to keep it under 64 oz.  Try it sometime.

I was anxiety ridden.  I thought of death daily.  I am on blood thinners, what if I eat too many greens or not enough or cut myself shaving…am I going to bleed to death?  What if I was driving to pick up my daughters from school and I suffered sudden cardiac arrest?  My baby would be in the car.  My daughters would be waiting at school and I wouldn’t come.  I can’t go to sleep.  What if I never wake up?  I need to kiss my son and daughters 100 extra times today because what if I never get to kiss them again? Saying goodbye to Jeff made the kisses a little bit longer and the hugs a little bit tighter.  I have this wonderful man finally and now I could never see him again?  I am so tired and so sick but we need to have a baptism and a party.  I have to do this…what if this is the last thing I get to do for my son?  What happens if I die….what will happen to my girls?  They will be separated from their brother and my family and automatically go to their father.  I was convinced they would never have chance at a decent life because their father suffered from alcoholism and was very irresponsible when it came to the girls.  He can’t keep a job, how will he support them?  I started having people take pictures of me and the kids all the time.  Moms usually hide behind the camera.  I realized the kids would not have many photos of me if I died.  I wanted them to have that.  I started a cookbook with the recipes I often cooked for them making it a point to hand write what I could so they could look at that.  Was Jeff going to have to raise Jaxon alone?  The girls have become very close with Jeff and his family.  Would they ever get to see each other again?  I don’t have anything to leave for anyone except a small life insurance policy, which I purchased when I started school and went to part-time at my job.  Thank God.

I was very excited to go back to work in August when my maternity leave was up.  It was only part-time on an as-needed basis. I only worked a couple of times before I had a breakdown.  Luckily, I worked at my ob’s office.  I asked her to get me into the schedule that day.  That day she started me on anti-anxiety medication and an anti-depressant and I didn’t work again.  I was having panic attacks.  The walk from the parking lot to the building was almost impossible without stopping to rest.  I couldn’t get through the day without thinking about what happened and how I could die in the parking lot and never see my family again.  I was getting anxious about what would happen when school started.  The doctors weren’t going to allow me to work at this point, now they aren’t going to release me to go back to school.  How am I going to pay the bills?  How am I going to keep my family fed?  Formula and diapers? Back-to-school shopping?  Christmas?  Sometimes I received child support from the girls’ father.  When he worked I did.  Thank God for Jeff who stood by us without even a doubt.  He supported me in so many ways.  He held me when I cried.  I cried all the time.  He took charge of the girls and their school needs.  He was at my house every chance he could to take care of the kids and when he couldn’t be, he made sure someone was there to help.  He took me to almost every appointment.  He took Jaxon to his new baby appointments.  He changed most of the diapers and fed most of the bottles.  (This is the tough guy that was never going to change a diaper)  He communicated to the rest of my family of my progress or lack-there-of.  Eventually, he moved me and the kids into a home on his family’s farm property so I could be close to whatever help I needed.  He paid for the rent and for the car and the insurance and gas, for the utilities.  He paid for everything.  But now I am not working at all.  Will I ever be able to pay for anything?

I sent in my application for disability.  That same week I had my 90-day follow up with the cardiologist.  This was a huge turning point.  I was told by the doctors that with PPCM there are three types of women.  There are those that recover quickly, gaining their healthy ejection fraction within weeks and go on to living a normal functioning life.  There is a group of women who have a low ejection fraction to start and they improve very slowly but they improve none-the-less.  There is a third group of women who leave this world as a result of this disease of the heart.  I was told that ejection fraction (the rate in which blood can move throughout the heart) affected all women differently.  A healthy heart should be about a 65%.  Some survivors could run a marathon at 40% and some women at that same ejection fraction may find it hard to get out of a chair.  I was told that 90 days would be a big determining factor over which one of these groups of women I would fit into.  Well…I wasn’t dead yet.  Sounds brutal, but it’s honest.  So did I recover and I just still feel like poo?  I went in for the echo and the blood work.  I followed up with my cardiologist, Dr. Whitmer.  At diagnosis my ef was 10-15%.  He tells me it is still in the low 20s.  Now I need to see an electro-physiologist (EP) to discuss a pacemaker/defibrillator. OMG!  I never thought of this possibility even for a second, even with all the reading I did about PPCM.  More denial?

The pacemaker/defibrillator (ICD) was another huge thing to wrap my head around.  I still kept feeling like this can’t be right.  Does he know I am only 36-years-old?  I already have gained a ton of weight, my ankles look like that of an elephant, I am having a problem with acne and bad-hair days and now I have to look like I carry a pack of Marlboros in my shirt pocket every day for the rest of my life?  I almost told the EP I didn’t want one…why would I do that?  He told me how enlarged my heart had become.  There was now something in my heart called a left bundle branch block and now instead of all of my chambers pumping in sync, I have an arrhythmia.  I had a very large risk for sudden cardiac arrest.  Jeff drove me to Sanai in Milwaukee and I had the ICD put in within days.

Now I have this ICD.  I stared into the mirror all the time at the scar and the huge bump on my chest.  I was constantly afraid that if my heart rate went too fast that I would get shocked.  Every nurse and doctor told me something different about what the shock would feel like.  Some said it just felt as small as a static shock and some told me it felt like getting kicked in the chest by a horse.  Wonderful.  As I look in the mirror…not only do I see the scar…but Jesus…I am sooo fat.  I am eating healthy.  I just can’t move.  It’s just debilitating.  Walking to the mailbox causes me to be short of breath and my chest gets so tight.  God I am fat.  The depression sinks a little deeper.  At the same time, Jeff has to be with me constantly and when he is not, I have to have babysitters come, even when I am at home.  I can’t lift more than 10 pounds for the next six weeks and I definitely cannot put my arms up in the air.  They don’t want my wires to come loose in my heart.  Now I can’t even lift my son?  I can hold him, but someone must bring him to me every time…it’s hard to watch someone else take care of your kids when you are sitting right there.  It’s hard to watch someone fold your underwear when you are sitting right there.  It is ALL, just hard.

Within a few months I learned that my request for disability was denied.  Now what?  Jeff can’t afford to pay my bills forever.  His life savings is almost drained.  He has given up so much.  The thought of going to work paralyzes me, the doctors say I can’t go back to work and now the government is telling me that I am not disabled?  I never thought I would have to, but I had to hire one of those tv lawyers who only gets paid if you are approved.  I finally received my disability.  It was a full two years and six months after I first applied.  People ask me how I got through that time and all I can say is “you just do”.  I don’t know how I would have without the help of Jeff and his family.  They all have a special place in this slowly healing heart of mine.

A year or so after diagnosis, I realized finishing my nursing degree in the near future was just not going to be possible.  I took one class online so I could finish my LPN degree and decided to walk at graduation with the cap and gown.  It was for my kids.  It wasn’t for me.  I wanted them to have the visual that all of my hard work was for something.  I wrote on the top of my cap “Anything for my beautiful babies.  I love you Kyla, Zoe & Jaxon”.  I physically could not sit for the 3+ hour ceremony nor expect my children to.  I walked, received my LPN certificate and we went home.  It wasn’t perfect, but I did it.  I won’t be able to work, in fact I can’t even take the state licensing test without the ability to work and put in hours to keep my license.  Although I probably remember more than I think I do…I feel I have become victim to the “use it or lose it” mentality.

At my one-year follow-up, even with the ICD, my ef had only gone up a couple percent.  I believe I was 25%ish.  So many medicines.  Through discussion, the doctors and I decided to increase dosages on the beta blockers and ace inhibitors.  This combination seems to be the way to go for PPCM treatment and recovery.  The problem is, this cardiomyopathy has already zapped any energy I may have normally had but the side effects from the meds make it even worse.  The one drug I take is known to make it very difficult to lose weight and sometimes shows weight gain.  So now I will have even less energy or stamina for exercising and a challenge of weight loss side effects.  My doctor assured me that the payoff with the higher dose in addition to what the pacemaker was doing for me will only increase my chances of recovering that higher, healthy ef.

The second year follow-up showed an increase of only about 5%.  That is with the increase in meds.  How heart-breaking.  I kept trying to tell myself it was getting better.  I started seeing a talk therapist.  We talked about dying.  We talked about my children.  We talked about my relationship with Jeff.  We talked about how I didn’t know who I was anymore.  I felt like I didn’t have a purpose anymore because it was even hard for me to keep up with my mothering responsibilities.  In the past, being a non-believer in talk therapy, session after session, I became a believer.  She helped me find a purpose.  My new purpose, or my new “job”, was going to be to “get better”.  It’s the only thing I could do.  I had to get my depressed ass out of bed, shower, get dressed and walk to the corner today.  Then tomorrow I need to walk to the corner and then to the third driveway.  The next day make it to the second corner.  It was my job, or my purpose, to say no to pizza night with the kids because the sodium would make me feel terrible the next day.

Last Christmas, Jeff surprised the family with tickets to Florida and Disney world.  Here comes my anxiety again.  I can’t get to the neighbors fence without my chest tightening up.  How was I going to tour the parks of Disney?  Jeff got us a membership at the YMCA.  I started going to water aerobics and riding the recumbent bikes.  One day I decided to walk around the track because the treadmill seemed so easy. (I felt safe on the treadmill because if I set it for 2.5 it wouldn’t let me go faster than that and my heart rate wouldn’t rise too high and my chest wouldn’t get tight)  Well, I only made it one round on the track and I was out of breath and my chest was tight.  I was determined to walk without this feeling.  I saw the doctor and he assured me that what I was feeling wasn’t harmful that it was most likely, anxiety related.  So the next day after my regular bike and treadmill workout I decided to walk 2 times around and even if my chest hurt, I would make myself.  The next day, three times.  Two weeks before our trip I walked 40 times around.  11 times is the equivalent of a mile.  That weekend I decided to walk outside.  I decided to walk down the street.  When I made it past that darn fence I finally decided to walk until I couldn’t walk anymore.  When I got home I jumped in the car and measured my distance.  I had walked four and a half miles.  What?  Three months in to my journey and I had lost 30 pounds.  My clothes were too big and best of all, I was confident I would survive our trip to Disney.  This whole thing was a dream come true.  Maybe I am turning into one of those gals that has a 30 ef and that can run a marathon???  Ha Ha, wishful thinking.  Although sometimes I have good days, sometimes I have really bad days that I am so exhausted I can fall straight to sleep as soon as my butt hits the chair.

Our trip was the first week of May in 2013.  At the end of May, I had an echo and my three year follow up with the cardiologist.  I remember him walking into the room with a big smile on his face.  He told me my ef was 65%.  What?  Look again.  I think you are reading the wrong one.  He said, “Lisa, I think your heart is recovered.”  We both had so many questions.  He will tell you honestly that we both went into this journey blind.  He saw very few patients with this diagnosis prior to mine.  He wasn’t sure what to do next.  What would we do about the pacemaker and defibrillator?  How low can we go on the meds? Would I relapse if we decreased the meds too low?  Do I still need the diuretics?  He lowered my meds a bit and right now we are at a stage of “wait and see”.  Right now we are waiting to see if my ef maintains.

Right after this revelation, exactly one day after, I told my grandfather (my best friend and my closest confidant…the guy who worried about me every day) about my good news over the phone.  I went to pick him up for a family party the next day and he wasn’t waiting in his usual spot.  He wasn’t answering his phone.  I walked in to his apartment to find that he had passed away while showering for the party.  I talked to him right before he got in that shower.  Devastating to say the least.  There are many miracles to the story of me and my grandfather and for now I will keep those to myself.  Since that day I have been struggling with a depression so deep.  What a hard blow for me.  He is the man who always wanted to make sure I was ok, all the while, he wasn’t and he wouldn’t worry me with it.  It is almost like the day I told him I would be okay, his heart told him it was finally okay to rest…  so here I am… a bit stuck in my grief, but slowly trying to pull myself out.  I found excuses not to exercise.  I gained most of my weight back.  I know I can get back to where I was before he passed away.  I have to get back to work at “my job” the one where I “make myself better”.  The purpose I found so many months ago.

Part of my finding my purpose is dedicating my capabilities where I can feel productive.  I haven’t been able to work and staying at home each and every day isn’t the best for a person’s self worth.  I have talents and kindness to share.  I have experiences to share.  I have knowledge to share.  I have so many more stories to share.  These are stories from women around the world that are living with this condition as well as remarkable stories of women who have lost the battle with PPCM.  I have stories about a wonderful physician who has dedicated his life to PPCM research and helping to support us “heart sisters” when we feel we have nowhere else to turn for support and information.  I am trying to find a way to create awareness and early detection of this condition so other new mommies don’t have to experience what I have, so babies and daddies and siblings and parents don’t have to face their lives without their loved one.  I want to be involved in something that is for the good which will in turn make my heart feel good.

My Details

  • Date Diagnosed: 28/06/2010
  • Child: 3
  • Initial EF: 10
  • Current EF: 65

Story By Lisa Joski DeGrave

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