Implantable Cardioverter-Defibrillator

Implantable Cardioverter-Defibrillator

On April 5th, I traded in my lifevest for an ICD.  If you had asked me on that day, I would have told you that was the worse experience of my life.  Today, as I look back on it, I am not so sure that's how I would describe it, but it was definitely the most painful.  As it was explained to me prior to the surgery, I would be sedated but still awake.  I was aware of what was going on around me the entire surgery until they tested the device when they finally put me to sleep.  I felt every movement and felt as though I was being tortured.  I had read the account of others describing their experience and most say exactly what the doctor told me prior to the surgery that they were awake but relaxed.  However, after the surgery I was somewhat traumatized and very unhappy.

As a side note, I was told in advance that they would put me to sleep to test the device.  I wasn't explained exactly what testing is but I've read that they speed up your heart and the device shocks it back into a normal rhythm.  The shock has been described to me as a kick in the chest by a horse which is why they put you to sleep for this part.  It is a little scary wondering if the day will come that I experience this but I remind myself that it is better than the alternative. 

I spent a few hours in recovery.  I had to ask and then wait at least an hour for pain medicine.  It was as if being in pain after you had been poked, cut and prodded without much sedative was unheard of in the hospital.  This continued even after I was moved to a hospital room.  I had to constantly ask for pain medicine and wait, sometimes hours, for a response.  After my bedrest ended, I was able to move around which hurt even more.  My list of "rules" for recovery were constantly evolving.  I was always told not to raise my arm above my shoulder.  Now, I was warned not to put it behind my back.  Next, I was told I could resume most activities after a few days, but I was not told that driving was not one of them.  I was advised not to drive for two weeks.  I was reminded not to pick up more than 5-10lbs and I was given instructions on how to care for the incision.

I was discharged the next morning.  The incision and the area around it was swollen and very sensitive.  The incision was covered with purple surgical glue.  I needed to take pain medicine for a few days after being discharged and the pain eventually lessened to more of an ache.  My follow up appointment was two weeks later.  I drove myself (this was my first time driving) to the doctor's office because remember, I was told that I could drive after two weeks.  When I arrived, we discussed how things were going, I was reminded of what I couldn't do like drive for four weeks.  I notified the nurse that I was told two weeks in the hospital and I drove myself to their office.  She said, "Well you can drive but not more than 10 miles and don't use your left arm."  The evolving guidelines are my favorite. 

Next they checked the ICD to make sure it was still working properly and that the lead was still attached.  I am not sure if I explained this before, but the lead comes from the device and is attached to the heart. All of the restrictions to movement is to keep the lead in place until scar tissue forms around the lead and it holds it in place.  I was glad to hear that my ICD was still working properly.  It is very difficult with a 6 month old to adhere to all of their rules.   Its not like Lovebug knows what she is doing when she places her head or swings her arm and hits me directly on my chest near the ICD.

I want to summarize a few points from my experience for those who are needing to have their own ICD implanted in the future.  First, you should ask for a printed list of restrictions prior to the surgery.  This will give you the ability to plan your schedule appropriately and you will know how much help you will need when you return home.  Also, the last thing you want is to have to have the lead replaced which would result in having another procedure as well as starting the recovery time over again.  Second, I would suggest talking to your doctor about being sedated.  What will they do during the surgery if you are in pain?  Ask what is normal and what is not so that if the pain becomes intolerable, there is a plan of action.  I think that the drugs didn't work for me and I should have insisted that something be done. However, when you are in the moment it is not as easy to be an advocate for yourself as it is beforehand.  So those are my lessons learned and hopefully that will keep others from having the same experience. 

5

Five.  The number of percentage points my EF increased.  On March 15th, I was scheduled for a follow up echo to see what my ejection fraction was after being treated for PPCM for 3 months.  At my doctors visit prior to this one, we talked about an ICD and how I would need one if my EF was less than 35.  Well the doctor estimated that it was only 25-30 (later they changed it to 20-25) so I would need an ICD.  I don't know what I expected.  I guess I was hoping that it would be 30.  After my episode of ventricular tachycardia, I figured it my EF was still low but I hoped that because my medicine was increased, maybe it had continued to improve.

Needless to say, I was pretty disappointed.  I didn't want to write this blog anymore because I wanted to be able to share good news.  Instead my update is that now I needed an ICD.  I won't dwell on my disappointment.  Instead, I will tell you about how I traded in my lifevest for an ICD. 

My cardiologist referred me to an electrophysiologist who would implant the ICD.  He was very knowledgeable and I felt comfortable moving forward with the surgery (not like I had much of a choice).  The ICD is an implantable cardioverter defibrillator which is useful in preventing sudden death in patients.  The ICD can pace the heart if the heart rate is detected to be too slow and it can shock the heart when the heartbeat is too fast or chaotic.  The ICD is not a treatment for PPCM.  It's meant to protect against sudden death which can be a result of PPCM.

Being able to get an ICD is a blessing because I no longer need the lifevest.  The lifevest made me feel safe but it was a constant reminder that there is something wrong with my heart.  Even when I was sitting down with no symptoms, I still had to deal with the lifevest poking my side.  I hope that the ICD will not be a constant reminder like the lifevest but I know that it's not something that I get and forget about.  The ICD comes with its own set of challenges.  I have to be aware of my surroundings because not every environment is safe for ICD patients. 

I was told what to expect during the implantation surgery (procedure) as the doctor called it but I will explain why it is definitely surgery and not a procedure.  I would be sedated but awake.  They will create a pocket for the ICD in my chest and run a lead to my heart.  I would need to stay in the hospital overnight, I shouldn't drive for 2 weeks, I can't raise my arm above my shoulder, I can’t put my arm behind my back and I can't pick up more than 5-10lbs (Lovebug is about 20lbs).

Returning to Work

I am a few weeks behind on writing. I started this post on March 12^th but I was a little saddened by my second echocardiogram on March 15^th and I couldn’t return to writing.  I had hoped my ejection fraction would have shown a little more improvement.  This post, however, is not about my EF.  It’s about returning to work.

Until last Thursday, I had not returned to work.  Honestly, I was not looking forward to it especially with so many unknowns right now.  I wondered am I healthy enough to return to work, will returning help me or end up hurting me in the long run.  I've heard accounts from women that made me unsure about what it would be like.  Some immediately went back to work after their maternity leave and felt like it helped them because they were able to take their minds off their health issues, while others felt like it added to an already stressful situation.  Like any illness PPCM moms are faced with losing their income and benefits when their maternity leave (if they had any to begin with) is up.  It is difficult for them to qualify for disability even when the symptoms of their condition or treatment keep them from working.  To me, after you have a baby is the worst possible time to lose your job and medical coverage.  Babies are expensive.

I don't know what the future holds but I pray that I can juggle everything that is going on as well as return to work.  I've worked hard in school and in my career and I would like to get back to where I was before my diagnosis.  For now, I am going back to work at 50%.  I am grateful that my job is flexible and that they are able to work with a part-time schedule. 

Aside from dealing with health issues, I like all moms that return to work, had to leave Lovebug for the entire day.  I think that was the hardest part.  I was afraid that she would miss me; I already knew I would miss her.  Thankfully, a few of my friends and coworkers had recently returned to work after their maternity leave.  I was just like them on Thursday, a regular mom who missed her baby girl all day. 

My first day back wasn't as horrible as I thought. :-)  I work with a great group of people that welcomed me back.  One thing that I could have done without were the “you had a nice long break” comments.  These were people that probably don’t know what is going on and they just thought I had extended my maternity leave. I didn’t want to be a downer and tell them that I have been sick the last three months.  I just agreed that I was lucky to spend time off with Lovebug.  Of course, I missed her but I glanced at her pictures when I had a chance.  I only checked on her a couple of times and she seemed to be happy but missing me a little.  Around 2pm I really missed her but I stuck it out until the end of the day.  I was glad that I was off the next day because I needed my Lovebug fix. 

I think I can do this and my plan is to eventually return to a normal schedule when I have recovered or at least when I am better and can function normally.  Until then, I will do my best and I hope that any PPCM moms that are in the same situation know that they are not alone.

When the lifevest sounds..........

I've been writing about sodium because that's what has been taking up most of my time lately but I need to interrupt to discuss my latest development.  As you know, I am wearing a life vest for at least 3 months until my next echocardiogram.  I am following the instructions and I only take the life vest off to shower.  Although I'll admit that in the beginning I was so tempted to take it off for a decent night’s sleep.  Now, I am so used to the sensors in my side and "paddles" on my back, I might actually miss it. 

On Christmas day, my life vest alarm went off twice.  I was moving around and rubbed the sensors so I called the company to see if this was an actual alarm or a false alarm.  Just as I suspected, they said it was a false alarm and that my heart activity was fine.  I've had several alerts from the vest but they are more like friendly gongs that tell you to fix the sensors.  These alerts are a little unnerving, especially at night, but I quickly realize what the alert is for and fix the vest.

 

Fast forward to a couple of weekends ago.  It was about 12:45am on Saturday when my life vest alarm went off.  Not the usual "check your sensors gong" but the audible "bystanders stand back/do not interfere" alarm.  Since I was asleep, the alarm woke me up (which I think could cause anyone to have a heart attack) and I called the company hoping but not expecting them to tell me it was a false alarm.  I didn't do anything to set it off and I wasn't really moving at the moment; I was asleep. 

The customer service rep told me that the vest was working correctly and it picked up an arrhythmia.  My next step should be to call my cardiologist in the morning (Saturday morning) or on Monday.  Of course, I could barely sleep the rest of the morning and I decided at about 8:30am to give them a call.  I was greeted by their answering service and then transferred to the on-call doctor who said that he would pull the report and let my doctor know what type of arrhythmia it was.  While I was asking him if someone would call me back, he hung up.

I am not sure if any of you can imagine but that made for a very anxiety filled weekend and anticipation for Monday.  On Monday morning, I called the office and played phone tag with one of the nurses only to be told that the doctor wanted me to come in for an appointment.  Doctors really need to work on this communication thing.  I think since I already am aware that something is wrong, they should be able to tell me what it is.  Not knowing sometimes is worse than knowing.

My appointment was scheduled for Wednesday so I spent the next few days researching arrhythmias and patient life vest stories.  An arrhythmia is an abnormal heart rhythm where there is a problem with the rate or the rhythm of the heart.  There are many types or arrhythmias.  Some cause the heart to beat too fast, others to slow and some erratic.  When the heart isn't beating correctly, it isn't pumping blood correctly and other organs may be damaged because they aren't receiving blood.

 

The cardiologist told me at my appointment that the recording of the night when the alarm went off showed ventricular tachycardia.  This is a very fast, dangerous heartbeat caused by a malfunction in one of the heart’s ventricles. It is a pulse of more than 100 beats per minute with at least three irregular heartbeats in a row.  The symptoms are palpitations, an uncomfortable awareness of the heart beating rapidly or irregularly, dizziness or lightheadedness, shortness of breath, chest pain or angina, near-fainting or fainting, and weak pulse or no pulse.  Ventricular tachycardia may also cause sudden cardiac arrest or even death.

Since I was asleep, I did not notice any symptoms.  My cardiologist said that as of now this had been a one-time thing and he thinks it would be a good idea to wait for my echo before deciding whether I need to have an ICD or similar device implanted.  These are usually implanted when an EF of less than 35% persists longer than 3 months.  I've come to terms with needing an implant.  It would be great if my EF is over 35% at my next appointment but I am also fine with a slow and steady recovery. 

It has been over a week since my alarm when off and I have to admit it makes me nervous to think that I might experience sudden cardiac arrest.  I just pray that this vest works if I ever need it.  I must say that after this last alarm, at least I know the life vest is paying attention.

My New Sodium Restricted Life - Part 2

My New Sodium Life – Part 2

Before I was pregnant and during the beginning of my pregnancy, we cooked most meals at home and would eat out a couple times a week and then maybe once on the weekend.  We started to cook at home more often around my second trimester because I had gestational diabetes and I needed to watch my diet.  However, from time to time, we still enjoyed a few meals at restaurants.  For a couple of months after I had Lovebug, until my diagnosis, I could eat out unrestricted but I didn’t go out very often because we had a new baby at home. 

Sodium at Restaurants

I think that my first time eating out after my diagnosis was around January 13^th.  My little sister came in town for an interview and we decided to grab lunch.  I went online and I pulled up the nutrition facts from many restaurants including the Olive Garden, Red Lobster, Chili’s, and Applebee’s.   I know some people don’t necessarily like to eat at chain restaurants but there aren’t many restaurants, other than chains, that post their nutrition facts online.  There are a few websites like sparkpeople, nutrition-charts, caloriecount, fat secret, calorieking, and healthydiningfinder that have nutrition facts for a wider variety of restaurants.  The problem that I have with third-party sites is I am not sure how accurate the information is and often nutritional details aside from calories, fat, carbs and protein may be missing.  As a personal preference, I would rather be sure that I am staying within my daily limits so I try to stick with restaurants where the nutrition details are listed on that restaurants website. 

Additionally, many restaurants will accommodate special requests for a low sodium diet.  Ask if there are items that can be prepared without salt or seasonings containing salt.  For example, if I eat out and order an egg, I ask them to cook the egg without any seasoning.  I was even told at one restaurant when I made this request that they never put any seasonings in their omelets.  Also, you should request that items, such as cheese, sauce and salad dressing, that are high in sodium are put on the side.  This way you can choose not to eat those items or to eat less than the full serving.

There are two approaches that I have to eating out.  If I’ve decided to have a “cheat meal”, I may or may not look up the nutrition facts and I limit my daily sodium from other meals to 1000mg.  If I am eating out but sticking to my 1500mg limit, I find meals that are under 1000mg and my other meals during the day will make up the difference.   

I decided to go to Red Lobster so that I could stay under my daily 1500mg limit.  I ordered the fried farm raised catfish lunch.  This was 440mg of sodium which includes the tartar sauce (from what I understand).  I added a plain baked potato without salt which dramatically lowers the amount of sodium in the baked potato listed on the website.  Most of their items under Today’s Fresh Fish are low in sodium but it looks like that only includes the fish so be careful when adding sides which are listed separately.  Also, the Create Your Own (“CYO Combo”) meals have some items that are low in sodium.  I am not sure how many you select to create your combo but even two will start to add up.  There are a few items that exceed 2300mg (the daily maximum for adults without heart complications).  The Admiral’s Feast for example is 4,050mg and the Crab Linguini Alfredo is 4520mg. 

I didn’t find as many options when I looked up the nutrition facts for Olive Garden.  The Chicken Margarita, Herb-Grilled Salmon and Ravioli di Portobello are all under 800mg. The Herb-Grilled Salmon is the only dinner item under 1000mg.  It looks like it’s possible to build a dinner with less than 1000 mg.  For example, the pastas all have 10mg of sodium, traditional marinara sauce has 720mg and the chicken topping is 230mg.  Another option is to order the pasta with half the marinara sauce and top with meatballs or shrimp which have 580mg of sodium.  Remember not to add parmesan cheese and it’s probably best to avoid the breadsticks and salad.  If you’re anything like me, no breadsticks and salad at the Olive Garden might make you sad BUT the good news is………. you can order almost any wine, signature wine cocktails, traditional favorites (margaritas) or beer that you’d like.

My New Sodium Restricted Life - Part 1

My doctor gave me medication, told me not to exercise, other than walking, and that I needed to be off from work at least until my next echo.  At that point, his recommendations may change based on my ejection fraction.  However, he did not give me any advice regarding vitamins, supplements, sodium intake or liquid restrictions.

I've read various articles and there is plenty of conflicting information.  I've also read some stories from women who share what worked for their recovery.  I want to start with the American Heart Association recommendations and discuss how I've approached my recovery and why.  Also, I should mention that there are studies that did not find it beneficial for heart patients to restrict their sodium intake.  These studies found that limiting sodium did not result in better results and in some cases, resulted in higher readmission to the hospital.  The readmitted patients had low sodium levels and high creatinine levels.  It also seems like those patients were prescribed high-dose diuretic therapy and that the high-dose diuretic in combination with a low sodium diet may have been too aggressive.

The American Heart Association recommends that people with mild heart failure limit their sodium intake to 1500mg and people with severe heart failure should consult their physician.  The daily recommended maximum for people without heart conditions is 2300mg.  It's estimated that on average Americans consume 3300mg - 5000mg per day.  So even if you don't have health problems, it may be a good idea to track your sodium for a few days to determine if you are over or under the recommended daily maximum.

Through a little research and by asking women who started their PPCM journey before me, I found that they believe limiting sodium to 1500mg and water to 50 ounces is best.  See, when your heart isn't pumping efficiently, fluid accumulated in your lungs and you can experience swelling.  Your brain and your heart gets priority and receive oxygen rich blood and organs like your kidneys are not getting what they need.  When the kidneys, which help your body get rid of excess water, are no longer functioning properly.

I decided to try the liquid limit that other PPCM women recommended and the sodium limit of 1500mg that is also recommended by the American Heart Association.  I have not been prescribed a high-dose diuretic and my sodium and creatinine levels are normal so I believe limiting my sodium will be beneficial.  Through a lot of hard work, I have been able to stay under 1500mg most days.  Some days I go up to 2000mg but not often and I've had 1 cheat day since December 15th.  In a later post, I will discuss some of the food that I've found works for me and share links to recipes that I've actually tried.

I don't know how many people reading this track their sodium and stick to a low sodium diet but it is almost impossible without completely changing the foods you consume.  I think most of us at one point count calories or carbs but rarely pay attention to sodium content. 

A teaspoon of salt has 2300mg and most recipes add salt to your dish unless you specifically look for low sodium recipes.  You would think that lowering your sodium intake means not adding salt to recipes and definitely avoiding the salt shaker at the dinner table but it’s not that easy. Let me tell you why you must change everything about the way you eat (unless you are already a healthy foodie). 

Any processed foods, including frozen foods are extremely high in sodium.  Most sauces, cheeses, cereals, and breads are high in sodium.  Here is a list of the sodium content in common foods.

• slice of pizza - 400mg to 800mg
• hotdog - 820mg
• dinner roll - 200mg to 300mg
• 1/4 cup of ketchup - 550mg
• cereal - 100mg to 250mg
• milk - 100mg
• taco - 300mg

Restaurant meals are also very high in sodium and I've found that most meals alone are over the 2300mg daily limit. However, there are a few meals that fall under 1000mg (I would like to eat more than one meal a day) by looking for the nutrition facts for almost every restaurant that I could think of. Unfortunately, there are still plenty of restaurants that do not post their nutrition facts and that will usually keep me from trying to eat there.  I will try to summarize the restaurants that I've visited and even those that I decided against in my next post.  

** Update ** At my last doctor's appointment, I asked if there were any food/liquid restrictions that I should follow.  He said that I should avoid alcohol and restrict my sodium by cooking at home, not adding salt and by switching to a salt substitute.** 

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.