The journey continues. . .

So, I get home from the hospital. It’s a Friday night.  For the first time I have a chance to really think about the events of the last week.  It still hadn’t sunk in.  In my mind, I’d be sick for a while, but back to normal soon enough, this wasn’t gonna be a huge deal.  Oh boy was I wrong!! 

I got through that initial shock of diagnosis.  But the true scope of impact on my life had yet to be realized.  As I write this now, I honestly cannot remember what I thought at first.  I do know I was told by every doctor I saw while in the hospital (there were many) that my heart would recover and I’d be back to normal.  I did get back to “normal”, but it is a very different normal than the one I knew. 

Before

My daughter, Delilah and I in Las Vegas 3 months before diagnosis.

 Once, I had been a fairly active person.  I worked full time plus as a RN in the operating room at Meridian Park Medical Center.  To this day, I consider my co-workers family.  I loved my job. I looked forward to going to work. Talk about blessed, how may people can say that?  I was a single parent to a 4 year old daughter, the light of my world.  We had 2 dogs, lots of friends.  We were always busy.  I was used to going and moving and doing stuff.  

The Grocery Store

When I got sick, I struggled to realize and accept my limitations.  I remember about 6 days after I was discharged from the hospital. I really hadn’t done much but sleep, so I felt kinda ok-ish.  We needed groceries, especially since my diet had to be changed to a low sodium, low fat diet due to my heart issues.  My roommate, Michael and I went to the store.   We probably spent an hour, maybe an hour and a half in the store.  Looking at labels, trying to figure out what items I could eat and not eat.  By the time we hit the checkout, I was pale, clammy, nauseous and sweating profusely.  My heart was pounding in my chest and it felt like I was being stabbed right through my sternum.  I barely made it to the car, before collasping.  Michael was prepared to carry me if needed. Im stubborn and I WAS GOING to make it to the car on my own.   

WTF??? It was just a trip to the grocery store.  Shouldn’t have been a big deal.  I was so tired, it was exhaustion like nothing I’ve ever felt. My limbs didn’t want to move, I could barely form a coherent thought.  Thank goodness for my amazing friend Michael. Not only did he cart all the groceries in the house, he put them away and made me dinner.  I sat on the couch and couldn’t move for hours.  In fact, Michael had to help me up the stairs.  I didn’t have the strength to get up one flight.  

Back to the hospital

The next day, I still felt pretty bad.  I laid around all day until my BF at the time, Troy came over.  He was going to drop me at MP to have my labs drawn.  Michael, who worked there too was going to drive me home.  I also wanted to stop in to talk with my manager and see my co-workers.  Go to the hospital, got my blood drawn (the first of many, many, many blood draws) and headed up to my department.  It’s a 3 minute walk and a 1 floor elevator ride.  I was drenched in sweat by the time I got there.  Again, pale, clammy, nauseous and that stabbing pain in my chest was back.   

I tried to hide it.  Have I mentioned that I’m stubborn and fiercely independent??  I didn’t want anyone to see how bad of shape I was in.  Like if no one else saw, then it couldn’t be true. 

I couldn’t hide it. Michael, as usual, saw right through my false bravado. We attempted to go home, but it didn’t take long for him to turn the car around and take me to the ER.   

If you want to get seen quickly at the ER, then saying, “excuse me. I am having chest pain and I am in heart failure” works really well.  They move super quick.  EKG done with in 5 minutes.  Seeing an MD within 10 minutes.  IV and pain meds in within that same 10 minutes.  I had a CT scan as well.  It looked the same as the one I had a week before.   I was admitted ( for the 2nd time in a week) for observation.  

Angiogram

The next day I still was not ok.  So, the doctors decided I needed to have an angiogram. This would determine if there were any blockages in the arteries leading to my heart.  I had the procedure that afternoon. I am blessed in that in my professional life I had worked with the nursing team in the Cath lab. So, I knew everyone in the room with me, with the exception of the cardiologist.  He was the lucky one on call that day. Nice guy and no complaints from me.  My good friend Karen, who is also an OR RN actually was able to come into the Cath lab suite with me and held my hand. They did use some sedation. I will fully own I am a WIMP! I don’t want to know what is happening in those kind of situations. I did this for a living, I know too much. I remember it all, it hurt, but didn’t take too long. Thankfully, the words “wide open” were used the describe my arteries.  

A few hours later I got to go home. Troy had been there the whole day. I felt terrible. I do not like it when those I love are hurting, no one does. I hate it even more when I’m the cause of that pain. He was so scared for me. It was heart wrenching.  Everyone in my world was upset, worried and a bit in shock too. I was (still am) way too young for this shit!! Thankfully between my family and friends my daughter, Delilah was always cared for. My mom basically moved in with me for those first few months.  Most days I couldn’t get out of bed. My body felt like lead. Too heavy to move. 

Limitations

Much of this was due to the CHF but also the meds they had me on to treat the CHF.  Beta blockers, diuretics and ACE inhibitors. All designed to drop my blood pressure and heart rate, so my heart could hopefully heal itself. And blood thinners too, thanks to the clot inside my heart.  The side effects of these meds were rough.  Exhaustion on top of exhaustion, dizziness and nausea just to name a few. No sooner had my body adjusted to the meds, they would increase the dose. And it all started over again, every two weeks for about 5 months. The idea was to provide the optimal healing environment for my heart. Doing this meant increasing the dosages of these meds one at a time until my blood pressure dropped dangerously low. Thats how they determined when I was at the max dose.  Don’t get me wrong, I’m ecstatic these meds exists, I’d be dead without them. It was just rough, anyone who has experience with them will get it. 

Learning to live with my limitations was and is a constant struggle for me.  I have learned that I have to pace myself and prioritize.  Before my illness, I would get Delilah and I ready for school/work, drop her off at daycare and spend the next 8 hours (sometimes more if I was on call) in the operating room, caring for patients.  After work we would come home, have dinner, bath time etc.  Then do the whole thing over again. 

Setting Priorities

Since getting sick, I can’t do that anymore.  I get Delilah to school and I come home and have to lay down.  Its not a want too, its a need too.  I had to choose what was more important.  Getting some chores done or being able to function when Delilah came home from school.  I chose her. So, I rest and nap as much as possible when she’s not home, so I can care for her when she is.  Some days even that isn’t enough.  

I struggle, I wear myself out, I overdo it.  I have a hard time letting myself be sick.  Somehow, from somewhere it’s ingrained in me to be independent.  I shouldn’t need help.  I can just push myself past the pain, etc and get things done.  I can do that, but I pay for it.  If I don’t listen to my body and stop when it says so, It will take me 3-4 times as long to recover.  Not to mention ER visits and hospital admissions.  I have learned to be patient. Well. . . sort of.  Im not that patient, not at all. But I have learned to try, with myself and others.  

In the beginning

Every little heart beat, almost 1000 times a minute, each one important, yet generally we don’t notice most of them. I know I didn’t. Not until 2 years ago, April 25th, 2017. That was the day, the day I started paying attention to the beats of my heart, every one.

You see, that was the day I was diagnosed with severe congestive heart failure (heart doesn’t pump properly), dilated cardiomyopathy ( giant swollen heart and dilated blood vessels) and a blood clot literally inside my heart, not a blood vessel ( like in a heart attack), but inside my left ventricle. I’ve been a nurse for 15 years, I had never seen that one. Did I mention that I was 37 years old…mic drop!

Of course, like most of my life, I didn’t get to this point by the usual path. Standard symptoms of CHF are shortness of breath, swollen legs and feet, weight gain, trouble breathing while lying flat and fatigue. I had no trouble breathing or swollen legs or feet. I did gain weight and I was always tired.

Of course I was, single mom of a busy 4 year old who also worked full time plus. I figured tired was just part of the deal. I’ll own that I’ve always been on the heavier side, so some weight gain wasn’t that unusual.

My only symptoms were nausea and stomach pain. I’d been to the ER multiple time, a GI doc and had had an upper GI this same day.

So, I was in the ER again, my poor momma with me, I’m sure scared to death. I called a surgeon I know since the ER doc was thinking maybe cholecystitis ( gallbladder infection). He ordered a chest and abdominal CT. We were looking for a hiatal hernia ( hole in the diaphragm). What we found was very different. The scan showed the blood clot inside my heart, my left ventricle to be exact.

WTF!!! OMG!!! I sure there’s more three letter expressions of disbelief I could add… but you get the point. How did THAT get there??

I swear in that moment I thought, “I’m gonna die, I gonna die, how did this happen”. Needless to say, I was freaking out!!

The nurses actually had to sedate me, I was a bit hysterical. All I could think about was, I’m dying and my little girl needs me. This can’t happen!!

The rest of the day is kind of a blur. I do know I had an echocardiogram, some blood work and was admitted to the hospital. I remember my mom being there, my sister came and so did my then boyfriend. My baby sister, Brooke stayed the night with me while my mom went back to my house to take care of my daughter.

I don’t remember much from those first few days. What I do remember is my sister being there every day and behaving way more grown up than I’ve ever seen. She asked the questions I didn’t have the presence of mind to ask, she took notes and she was Awesome!! I’m still impressed.

I spent 4 days in the hospital, that time. I was discharged on a Friday afternoon. My close friend Karen, took me home. It was surreal. It still is sometimes.

That day showed me that life, health and people who love you are things you shouldn’t take for granted. I’m so thankful to be alive right now and for the friends and family that rallied around my daughter and I. Each one of them is a blessing and I count those with every little beat.