Prognosis and Emotions

Monday night was difficult because I shared my story with friends and family.  I was unsure whether I wanted to because this is supposed to be a happy time in my life and I didn't want people to feel sorry for me.  Although my news made some people sad, they were encouraging and I appreciate all the prayers and support.  It was also a sad night because I read about a mother my age, 38 weeks pregnant with her third child, that passed away unexpectedly less than two weeks before my Lovebug was born.  According to the Houston Chronicle article, she died of PPCM which she did not know she had.

I woke up the next morning extremely grateful.  I think I had PPCM for a while before it was diagnosed.  I remember being short of breath before my trip.  I am sure I thought it was nothing to worry about.  I even found it hard to let Lovebug lie down on my chest and I didn't suspect anything at this point either.  I am grateful that my symptoms bothered me to the point that I insisted on finding out exactly what was wrong with me.  It’s scary to think what could have happened if I had gone home with my inhaler and waited two weeks to see if it helped.  BUT I didn't and I get to be here with my family and every day that I am with them I am blessed.

Prognosis and Emotions

So, the first thing I did after diagnosis is google mortality of congestive heart failure and I found the CDC Heart Failure Fact Sheet.  According to this sheet, the about 50% of those who develop hear failure die within 5 years of diagnosis.  I immediately had a meltdown.  I could only have five years with my Lovebug.  Why was this happening to me? I had just become a mom and I have the most beautiful baby girl that needs me.  Will I get to see her grow up?

Then I did a little more research specifically regarding mortality and PPCM.  I still don't know what the right answer is because I've read statistics from several studies and they all vary.  Many estimate that 50% of women recover, 20-30% improve and the rest need a transplant or die.  Others estimate that the mortality rate is 1%, another 1% require transplants, and 75-90% recover.  The best outcomes are usually seen in women with an EF greater than 30%.  That doesn't mean that it’s impossible for me to recover but it is less likely.  Fortunately, I have heard stories from women who fully recovered that had 10% and 15% EFs at diagnosis.  Most importantly, even if I don't recover, there is a good chance that I can improve and manage PPCM while on meds.  For now, it’s one day at a time.  I wear my life vest, take my meds and spend as much time as I can with my family.

Further, it is estimated that 20% of post-PPCM pregnancies after a full recovery result in a relapse.  It is also advised that women who are not recovered (with an EF lower than 50% to 55%) avoid any subsequent pregnancies.  This is a little hard for me to deal with because baby number two was going to be our BOY (wishful thinking).  It is also very difficult to answer the questions, "When will you have your next one" or "How many more are you planning".  We just smile and say we don't know but the reality for now is there won't be baby number two.  Even if I recover, I am not sure I would want to risk relapse.  I would much rather be here for Lovebug and Sean.

My Diagnosis - The Cardiologist

On December 15th, I went to the cardiologist my PCP suggested.  We talked about my symptoms and he asked questions to determine whether I had a history of heart failure or if there was another cause other than pregnancy.  Since I did not have any other cause for heart failure, he believed that it was PPCM.  The following is an excerpt from the American Heart Association's discussion of how PPCM is 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:

• Heart failure develops in the last month of pregnancy or within 5 months of delivery.
• 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.
• No other cause for heart failure with reduced EF can be found.

The cardiologist prescribed Lasix, a diuretic, to help with the buildup of fluid caused by heart failure.  Removing fluid would help me breathe by removing the fluid from my lungs and reduce swelling.  He sent me to have an echocardiogram (an ultrasound of the heart) later that afternoon to confirm his diagnosis.  The echo would show what my EF was.  My sister came from New Orleans and went with me to my second appointment that day.  Thanks sissy for the curbside service and for being my advocate (I wish everyone had someone to advocate for them and to ask questions because it is difficult to do these things for yourself when facing a serious condition).  The echocardiogram didn't take long but since it was late in the day, I would have to wait until Friday for the results.


When we returned home, I experienced a flood of emotions but I want to cover my thoughts and feelings in a later post. 

On Friday afternoon, the doctor called and told me that I have PPCM. My EF is 15-20% (normal is between 55% and 70%).  I believe I was given some other details that I wasn't able to focus on because the EF was so much lower than I expected.  I was prescribed additional medication and told that I would be fitted with a life vest.  A life vest is a wearable defibrillator worn by heart patients at risk for sudden cardiac arrest (SCA).  It is worn under your clothes at all times except for bathing and it is attached to a..... well I don't know what it is....a monitor maybe.  See for yourself below.

Lifevest

 

My Diagnosis - Emergency Room

I made it up the ramp because I knew that I needed to get myself to an emergency room.  I don't know where the strength came from but I put the car seat and the stroller back in the car and drove to the ER.  When I got there, again, I had to get the car seat out and put it on the stroller.  It reminded me of how exhausted I was shopping the week before my trip and how hard it was getting lovebug in and out of the car.

I checked in at the front desk and was called to a hospital room shortly after.  I was given an IV and they started running tests.  I had no idea that I would be in an ER when I left home that morning.  My lovebug, who loves to be held, had been quiet the entire time we were at the PCP's office but now she wanted some attention.  I did the best I could to soothe her and comply with the nurses coming in and out of my room (they kept moving her near the door even though I would move her stroller next to the bed 😁).  Eventually, I was told that I would need a CT scan.  Thankfully, Sean was able to take his lunch break and made it to the ER before I went for the CT scan.

Lovebug

The ER doctor told me that I did not have a blood clot but that I had a pleural effusion (fluid around my lungs) and an enlarged heart.  He said that the pleural effusion could be caused by my surgery almost 3 months ago and that it might clear up on its own.  He did not address my enlarged heart, prescribed an inhaler and told me to go back to my PCP in two weeks for a follow up X-ray.  I was given papers explaining the diagnosis to me and what I should do going forward.

Sean helped me put my things back in the car and I headed to pick up my inhaler before going back home.  I know I just told you all not to let them send you home with an inhaler and here I was going home with an inhaler BUT no one warned me.  When I arrived at Walgreens, my inhaler was not ready so I waited in the car in the parking lot.  Lovebug was ready to eat again and I was so tired but I couldn't go home without the inhaler because I STILL COULDN'T BREATHE. 

 While I was waiting for the inhaler, the PCP called to tell me that he received the results from the ER and that I should go to a cardiologist the next day.  Back to Google I went and this time it didn't look so good.  I found PPCM online that night and I was terrified thinking about what I would find out the next day.  I made an appointment for the next morning and my mom, who is a lifesaver and the other superhero in my life, came to Houston at the last minute to take care of lovebug.

My Diagnosis - Visiting a Primary Care Physician (PCP)

I went to the doctor on December 14^th.  I did not have anyone to help with lovebug so I took her with me.  In the garage, I parked on the second floor not realizing that there was no way for me to get the stroller up the stairs into the building.  I was already exhausted from taking the stroller and the car seat out of the car and the thought of having to put them back in the car, drive down the ramp, park on the first floor and take them out of the car again made me want to cry.  Instead, I decided to walk down the ramp to the first floor of the garage knowing that I would pay for this decision when I would have to push the stroller up the ramp to get back to the car. 

When I saw the doctor/nurse (I can’t remember exactly who I told what), I explained my symptoms.  I was short of breathe, had pain in my chest when I would try to breathe, and I occasionally coughed or wheezed when taking deep breaths.  I was in a fairly good mood and the doctor commented that I didn’t “look” like someone who was sick.  (I have a few thoughts on this comment.  I'll come back to later).

I was asked questions regarding my history with asthma and the doctor contemplated prescribing an inhaler for my symptoms.  However, he kept looking at me with a worried look which caused me to be concerned.  At this point, my WebMD research made me think that I could have a blood clot in my lungs (pulmonary embolism).  The symptoms are almost identical to mine: shortness of breath, chest pain and a cough.  Also, one of the main causes is surgery and I had a cesarean 12 weeks earlier.  I believe the doctor was thinking the same thing but I can’t recall if he ever said it. 

He eventually suggested that he find an inhaler which was safe for breastfeeding and that I come back the next day for additional testing.  I told him that I would rather figure out what was wrong immediately.  He agreed that it could be something more serious so he suggested that I visit an emergency room not very far from his office.

I want to pause my story for a moment to talk about this doctor’s visit.  In the month or so since my diagnosis, I have read countless stories about women who had their symptoms ignored by their doctors.  They are often dismissed and told that these are normal pregnancy symptoms.  Ignoring PPCM can lead to their condition going untreated until they get worse.  Some women have passed away before their doctors have figured out what was wrong with them. 

I understand that PPCM is a rare condition that affects about 1000-1300 women in the US each year and there are about 4,000,000 live births in the US each year.  BUT it is a condition that doctors should be aware of despite how rare.  First of all, the population that could be affected is limited to pregnant women or women that have just given birth.  Secondly, when the common symptoms: fatigue, shortness of breath, coughing, chest pain, bloating and swelling are present, testing is simple to rule out PPCM.

I say all of that to say, DO NOT LET A DOCTOR DISMISS YOU OR YOUR SYMPTOMS.  It’s difficult at times to speak up for yourself, difficult to insist that you are not sent home with an inhaler.  I know because I saw the dismissal firsthand.  I am sorry that I didn't look or act like I was sick.  I couldn't breathe.  Insist that your doctor run tests to rule out PPCM because it can be treated, especially if caught early.

My Diagnosis - The Beginning

On December 9, 2016, almost 3 months after delivering my lovebug (our baby girl), I flew to Panama City Beach with my family.  Lovebug’s first plane ride was easier than we anticipated and we were looking forward to a busy vacation.  We were having a great time shopping, eating, and sightseeing, but late in the evening on December 10th I became short of breath.  I couldn't lie down so I didn't get much sleep.  For about a month, I felt a lot of pressure when I held my newborn on my chest, especially if I was lying flat.   During the previous month, I woke up two or three nights gasping for air but this night was different.  It went from occasional discomfort to persistent shortness of breath.

The next day we went shopping and I had a hard time getting in and out of the car.  The seat belt, especially the one in the back seat, was so uncomfortable.  I felt a pain in my chest and I was extremely bloated.  I am not exactly sure how much weight I gained in the few weeks before our trip, but I would guess I was about five to seven pounds heavier than I was 7 or 8 weeks after the baby. 

Now usually I hop on WebMD and diagnose myself.  Most of the time MY diagnosis is more serious than whatever the doctor concludes (if I go to the doctor).  This time, I thought I had pulled a muscle or something (not sure what) so I layered on some OTC muscle rub and kept going.

Later that day, we went to sit on the beach and I could barely make it up the stairs on the way back to the hotel.  I had to walk slowly, hold on tightly to the rail and rest every three steps.  By the time I reached the top, Sean had already rinsed the sand from his feet and put on his shoes.   Again, that night I couldn't breathe.  I tried everything: sitting up in the bed, sitting in a chair and sitting out on the balcony.  Nothing seemed to help.  It was very difficult trying to breastfeed and almost impossible for me to hold lovebug for any period of time.  Eventually, I gave up and Sean had to take over and feed her formula throughout the night while I tried to get comfortable.

Sitting on the beach

The temperature on Monday was a little warmer.  We decided to go to the hotel's heated pool.  I tried to swim from one end of the pool to the other but I couldn't breathe.  After the pool, we sat in the hot tub.  I hoped it would help my sore muscles.  Looking back, I know that I didn’t make the best choices, but I had no idea what was wrong with me.  That night, I didn't sleep at all.  At one point, while sitting on the balcony, I had a panic attack which made my shortness of breath even worse.  I felt at that moment that I should go to the ER but I calmed myself because I didn’t want to wake Sean and lovebug or “ruin” our vacation.

We left Panama City on Tuesday, December 13th. I didn't feel well during the car ride to the airport, maneuvering through the airport with our belongings and during the flight.  I felt even worse when we arrived back in Houston and tried to get our luggage to the car.  While we were waiting for the shuttle, I called my primary care physician to make an appointment for the next day.

Lovebug had a Long Day

I just want to add a thank you to Sean (superman) who carried lovebug, carried all our bags, took care of lovebug, took care of me, got us back to our home with multiple bags, suitcases and a stroller and countless other feats ……………………….



Daddy and Lovebug

Introduction

I am a very private person so you can probably imagine how hard it is for me to start a blog.  It is especially hard since Peripartum Cardiomyopathy (PPCM) is a very new and sensitive topic for me.  I am not a writer but I am going to do my best to convey my thoughts and feelings in each post. 

My first reason for starting this blog is to chronicle this time in my life and to give myself a place to express my feelings.  Secondly, in my opinion, there aren't many resources for women with PPCM.  I will say that I have found stories from other women online.  Some are scary and some are inspiring but most don't provide a daily look into what it's like living with PPCM.  Also, I had never heard of PPCM until I was diagnosed and I think that most other women would agree.  Not only are we (pregnant women) not warned or told about PPCM but most health care providers are not aware of PPCM and are missing diagnoses left and right.

For those of you that stumbled upon this post and have never heard of PPCM, the American Heart Association describes PPCM as follows:

 

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.

I will discuss the specifics of my symptoms and diagnosis in my next few posts but the American Heart Association lists the following symptoms.

• 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

I will post at least once a week but I hope to be able to share more often.  I also hope that my experience will help someone and that others will share their stories with me. 

See American Heart Association for more info.