My story starts on Sunday, May 21st, 2017. I was 39 weeks pregnant with my first child and the current measurements at the time were estimating our child would be around 10.5 lbs if the baby went full term. Due to concerns about the size and potential issues during and after labor, I was scheduled for a cesarean (C) section on May 22nd as a precaution.
I was 36 years old and over the years I had heard just about every labor and delivery story from all of my friends, family and coworkers. Even though everyone said my story will be my own, I never thought mine would be so unique and dramatic that it reminded me of a really bad Lifetime movie. Everything was so severe and so urgent there was really no time to process the magnitude of what was happening; which eventually ended in a final diagnose of Postpartum Cardiomyopathy (heart failure). Something I found out afterwards is that Postpartum Cardiomyopathy is often referred to as the “Silent Killer”. When left untreated it can lead to death. The days ahead were a whirlwind of emotions, physical pain and mental anguish. I experienced the best day of my life and some of my worst days all within an 11 day period….this is my story
On the evening of Sunday, May 21st I had two episodes of extremely sharp pains in my lower abdomen that lasted for about 15 minutes each. Since this was my first child and I was unfamiliar with the labor pains, I originally wondered if I was having contractions. “Do all moms feel like this?” was my initial thought. Little did I know this would be a reoccurring thought and the constant question nagging at me throughout the next 11 days. Once the second episode started I quickly realized there was no way in hell this is a contraction, women wouldn’t have so many kids if every contraction was this horrifically painful! In addition to my uncontrollable tears from the pain I was also unable to sit down or find a position even remotely comfortable. Because of this, we decided to call the on-call OBGYN who, after hearing my symptoms, recommended we go to the hospital and be seen as it’s hard to know without seeing me in person. On the way there I kept thinking “oh great I’m probably not in labor and I’ll add to the statistics of all the expectant moms that go in and it’s a false alarm”.
Upon arriving at the hospital, they placed us in a temporary room and of course at this point the pain had completely gone away. We were in the room for about an hour when the nurse walked in to tell us that I have Preeclampsia. Preeclampsia is a potentially dangerous pregnancy complication characterized by high blood pressure. They said the on-call doctor was on her way in because we are having this baby tonight! This is when the drama of my very own Lifetime movie became our reality.
We were stressed but even more excited to meet our baby. We wanted the gender to be a surprise, so we had no idea what we were having. We welcomed our very own miracle and little angel baby girl Nia Dawn Bredenberg at 11:06pm on Sunday, May 21st 2017 via C section. She was a very healthy baby weighing in at 8 lbs 14oz. My life-long dream of having a child and becoming a mother had come true! No one can prepare you for the moment you see your child, hold them in your arms or hear them cry for the first time. It is an absolutely magical experience and beyond any words I could describe. Sunday night and Monday morning were filled with so much excitement and love from all sorts of visitors including our parents, siblings, in-laws, grandparents and closest friends. I had my hemoglobin tested on Monday morning which showed I had lost a significant amount of blood loss. Normal hemoglobin levels for women ranges between 12.0 grams per deciliter to 15.5 grams per deciliter; I was only at 6.3g/dl. As a result, the doctor highly recommended a blood transfusion. Since I really knew nothing about blood transfusions except the scary stories from the 1980’s where HIV could be transmitted, I was quite nervous. My family helped me ask the doctor and nurses questions to increase my understanding and Google quickly became my best friend for knowledge. In the end, it seemed like the best decision to move forward with the blood transfusion in order to increase my hemoglobin count. We tried to keep the severity of everything light by joking that maybe I would get a little Kardashian and Adele blood. Unfortunately, I didn’t get either. By Monday night my hemoglobin had only increased to 6.8g/dl. With my visitors there, I was wheeled frantically down for a CAT scan with contrast dye of my abdomen. The cat scan showed that I had two abdominal wall hematomas. Abdominal wall hematoma after a C section is the more common complications after surgery, if there is a delay in diagnosis it can lead to serious complications and even be life-threatening. The term "hematoma" refers to a mass or collection of blood (blood clots). At that point they checked my hemoglobin again which had now decreased to 5.5. By Tuesday I had also developed an ileus. This basically means my bowels had shut down. I had severe distention; my stomach was so bloated it looked almost like I was pregnant again. It was super scary to not only feel awful but to also see the horrible physical changes my body was going through because of this ileus.
By Wednesday morning the doctor was very concerned about the two hematomas, blood loss and ileus and said we needed to go back in to have a second surgery to take care of the hematomas (blood clots) right away. Again, I was wheeled down frantically (insert Lifetime movie visual) to surgery. During the surgery they didn’t see as much blood as they thought they would with the hematomas. They were able to repair the area where the abdominal wall hematomas had formed.They gave me two more blood transfusions during surgery to help increase my hemoglobin count. After the surgery my hemoglobin count had now increased to double digits which was very promising! Now I needed to recover from this surgery and the ileus, so I was transferred from Postpartum to the Med-Surge unit of the hospital because they decided the next best steps to help with the ileus would be inserting a NG tube through my nose to help with the distention. We were told the Med-Surge unit has a lot more experience in inserting and monitoring a NG tube compared to Postpartum so we made the move. During all of this we also found out Nia was being discharged from the hospital because she no longer had a medical necessity to be there. At that point we decided to keep her in the hospital as a visitor. We just couldn’t bear the thought of being away from her at this point so she stayed and her dad was able to care for both her and myself. At only 4 days old her new home was the Med-Surge room with us.
Thursday was one of the hardest and worst days of my life. In addition to the discomfort of the distention, I started experiencing shortness of breath and pressure on my chest. Little did I know, it was only going to get worse…..it was time for the NG tube. The nurse on duty had shared with us how she has never actually inserted a NG tube. This of course made me very anxious before even getting the NG tube inserted. I had to suck through a straw while my sister in-law (who is a nurse) helped the nurse on duty assemble the NG tube that went through my nose, down my throat and into my stomach. The discomfort of the NG tube combined with the shortness of breath and chest pressure I was experiencing was almost unbearable. It hurt so bad to even try to talk, I thought I was on the verge of having a major anxiety attack. I begged my sister in-law to talk to the nurse about getting me something to knock me out because I couldn’t handle the discomfort of the NG tube. They were able to drug me up enough that I eventually feel asleep and the misery of Thursday was gone. Looking back at it all, I now know it wasn’t anxiety; this is when my heart start failing.
Even though I was hardly talking because of the discomfort of my throat and shortness of breath, Friday was a lot better than Thursday. I remember writing a note to my mom saying today is going to be filled with all positive thoughts and conversations because I’m determined to recover and get this horrible NG tube out. Believe it or not, that horrible NG tube was removed later that day. Regardless of how uncomfortable it was, it had removed a fair amount of junk which helped decrease the distention, so it did its job. Saturday was even better because my bowels started working again. The excitement of me finally going to the bathroom was felt by all! I was however still experiencing the shortness of breath, the chest pressure and they heard some light crackling in my lungs, which were all chalked up to being common symptoms of someone who just gave birth and came out of surgery. None of us knew these symptoms would escalate to the unimaginable events that were about to unfold.
Sunday started off great; my doctor came in to conduct my exam and she determined based on what she was seeing that I should be discharged by late afternoon. I did end up being discharged around 4pm that evening. Again, everyone was thinking the symptoms I was having were normal based on what my body had been through in the past week. As we were leaving the hospital and I was walking slower than most elderly people I recall thinking “is this really what moms feel like after giving birth?”. This was a constant mistake throughout the whole ordeal. I assumed this wasn’t abnormal, this must be what most moms go through after giving birth. How was I to know? Nia is my first child, all of this was so new to me. I looked over at Nia and cleared that thought out with a new one, I need to be strong enough to continue breastfeeding and take care of her; but just walking out of the hospital is exhausting!
When I arrived home, the shortness of breath got a lot worse. Thinking I was overly exhausted from all the activity, I took a nap with the prescribed pain pills that were helping with the discomfort I was still having from my recent surgery. I woke up from the nap to see my friends that had come over. It took everything I had to walk down the stairs, sit on the couch and have a conversation with them. I was breathing even heavier at this point and the chest pressure was increasing. When I spoke to my friends after the whole ordeal they said they thought I was just out of it from the pain pills and exhausted from everything I had been through in the past week. A couple hours later my sister and her family came over. My shortness of breath and discomfort persisted, but I knew I had to try to pump so my milk wouldn’t dry up for baby Nia. I was able to pump and get some breastmilk but it wasn't as much as I had been able to produce in the previous days. My symptoms and thoughts again pointed in the direction of anxiety. At this point we were all thinking that I was anxious because this is my first night home with the baby. I was now having a very hard time even laying down on my back. It started to feel like I couldn’t breathe whenever I leaned or tried to lay flat; I felt like I was drowning. This started to freak me out even more, which probably did lead to some anxiety. My sister, who is a massage therapist, gave me a massage to try and relax me. As she was massaging me she hit a pressure point which felt incredible and I finally had some relief. She told me it was a pressure point connected to the lungs. At that point we didn’t realize I had a lot of fluids building up in my lungs, heart and extremities. Since I couldn’t lay down to go to bed, we tried propping me up in a chair. I was breathing very heavy and wheezing even when I was sitting up. We finally decided to call the on-call doctor to get their advice; it quickly was becoming evident this was not anxiety. The doctor we spoke to said they couldn’t really say what might be going on over the phone and recommended that we go to the emergency room to get checked out. So, we packed up and made our way to the hospital, leaving baby Nia at home with my sister.
We proceeded to the emergency room upon arriving back at the same hospital I had been released from just a few hours earlier. My symptoms had escalated, I was exhausted and frightened to say the least. I literally couldn’t lay back without feeling like I was drowning. I was sent in for another CAT scan with contrast dye, only this time to evaluate my heart and lungs. They then drew my blood to check my BNP levels which shows the amount of fluids that are in your lungs, heart and extremities. I was told a normal BNP level is under 100 and I was measuring around 3,000 for the levels of fluid. This led the ER doctor to the conclusion I most likely have Postpartum Cardiomyopathy (heart failure). Postpartum Cardiomyopathy is a condition where the heart enlarges and becomes unable to pump sufficient blood to support the body. With Postpartum Cardiomyopathy the heart cells become damaged through an inflammatory process. A woman can go from healthy to complete heart failure in hours, days, weeks or even months after giving birth; sometimes while still pregnant. When the doctor said this is very serious and some people die, I remember almost chuckling and thinking “well I’m not dying from this!!”. It was just a ridiculous thought to even consider. There was no way in hell after all of this and finally having my baby girl Nia that I was going to die! They immediately started me on some diuretics to help with the removal of some fluids and sent us via ambulance to another hospital’s ICU where they had Cardiologists and the proper equipment necessary to help me. I remember making the terrifying call to my sister who was home with Nia and my parents. I had set her up as my health directive 10 years earlier. I had to tell them how serious this was and remind them that they will need to make decisions on my behalf in the event I become unable to do so.
In the ICU it was really hard to even have people in the room because I still felt like I was drowning and was completely claustrophobic. After
they completed an echocardiogram that took pictures of my heart the Cardiologists confirmed the ER doctors diagnosis, it was Postpartum Cardiomyopathy. This was a very scary diagnosis, but at the same time I was relieved to get some answers and a name to what was going on. This confirmed it was not just anxiety from being a new mom. Although they don’t know for sure what caused my Postpartum Cardiomyopathy, they believe it was due to the acute stress my heart and body was under with the pregnancy complications including: preeclampsia, blood loss, abdominal wall hematobins, blood transfusions, ileus and the two surgeries within a few days of each other. I stayed in the hospital for the next few days until we could get enough fluids removed. When I was released from the hospital my BNP was closer to 500 instead of that whopping 3,000 it was at in the emergency room.
I am now on the road to recovery with a low sodium diet, fluid intake management, cardiac rehabilitation and with prescription drugs that are working on repairing my heart. My heart was pumping blood between 30% to 35% due to the enlargement and stress whereas a normal heart would pump around 55% to 70%. I will be getting this checked again after three months of being on the medications.
I sincerely believe I will be one of the lucky ones and fully recovery from this. However, not everyone does. Thank you for all of your thoughts, prayers and amazing gestures you have shown to both myself and my family. I hope my story sheds some awareness on Postpartum Cardiomyopathy. I now know it’s a very rare disease which a lot of healthcare professionals don’t immediately look for since it mimics so many of the same symptoms as a regular 3rd trimester of a pregnancy.
I had been very lucky for 36 years to never experience a serious illness or hospital stay. During my time in and out of the hospital I couldn’t stop
feeling so bad for other people that have to go through something this traumatic and life changing without the support around them that I am so very fortunate to have. We were told that within an average 3 day stay in a hospital a patient will see 47 hospital workers. The amount and type of information being thrown at you can be completely overwhelming to someone in good health let alone someone with a serious illness. Here are my top 5 tips that I hope you will find helpful if you ever find yourself staying in the hospital longer than you expected:
#1 No one knows your body like you do
-A medical professional can take and read your vitals. They do not know your symptoms, only you do! Listen to your body and be able to describe
your symptoms with the most detail possible. If something isn’t helping you feel better be vocal and describe what your experiencing. Again, no one
knows your body like you do!
#2 Take control of your care, be your own advocate
-Since you’ll be receiving a lot of new and unfamiliar information you will want to make sure you have a pen and notepad or cell phone to take notes and complile questions. You can also use your cell phone to record the conversations so you can go back and listen to them. Googling all these new terms you have probably never heard of in your life will help you understand what the doctors and nurses are saying. You can track your medications to help you grasp how much and when you are taking them. Tracking is extremely helpful for pain medication management to help you wean down or off your pain medications during or after your hospital stay. Don’t feel stupid asking the doctor to repeat themselves or even to spell something out for you. Remember, knowledge is power and a key factor in your recovery. Ask 1 or 2 family members or friends to join you in the hospital when your doctor is meeting with you the more ears the better. Plus, they might have a better grasp or more experience on medical concerns than you do.
#3 Stay positive no matter what
-I know this is easier said than done, but staying positive is crucial for your future recovery. Whether you think you can or you can’t, you are always right. This Henry Ford quote couldn’t be more true when you are fighting a serious illness. You’ll have low points that will try to shake you. You might even have some healthcare professionals that are horrible…learn from them. You will have some amazing healthcare professionals…cherish them as those are the ones that will be your support in this fight. You need to stay focused on your recovery. A positive mindset is one thing that is completely in your control when so many other things are spiraling out of control.
#4 Let go of control outside of the hospital
-This is the time where you need to learn to trust your support squad if that is friends, family, neighbors or co-workers. Again, your main focus needs to be on your recovery. Don’t feel bad about everything that your support squad is doing for you and your family. This is when you’ll start to understand that people genuinely want to help and asking for and allowing help will help you recover faster.
#5 You can say NO to visitors and updating everyone on your progress
-This is the time where you should appoint 1 or 2 people to update your main support squad. You can also have them start a Caring Bridge page if that is easier for everyone. You don’t have the time and energy to update everyone and yield all the questions when you are still trying to seek and understand the answers. Your focus again needs to be on your recovery. Don’t feel bad about being selective with your visitors. You can’t spend time and energy comforting others about your diagnose. Remember this your crucial recovery time in the hospital.
****INCREDIBLE UPDATE*****
I RECEIVED THE INCREDIBLE NEWS ON 12/6/17 THAT MY PUMPING FUNCTION HAS FULLY RECOVERED!!! IN JUST OVER 6 MONTHS MY HEART'S EJECTION FRACTION (EJ) WENT FROM 30-35% TO 60-65% WHICH IS IN THE NORMAL EF RANGE!
As the nurse read me my results as I was on my phone sitting in the parking lot of the hospital to go to my regular cardiac rehab workout, the tears poured down my face. These were tears of the utmost gratitude. The recovery period is different for every woman that has PPCM and some lose their battle or never recover. I'm so grateful to be one of the lucky ones to get these results. I hope to continue to build awareness and help other moms fighting the PPCM battle. Thank you to all of you that have supported me through this!
Here are my top tips to help you in your recovery:
#1 Believe you can and will recover
#2 Don't wait to take action
#3 Build a support team that will help you through your recovery
#4 Speak up about how you are feeling
#5 Keep adjusting your medications until you have the perfect combination to get you feeling your best
#6 Switch to and stay strict on a low sodium diet (2,000 MG and lower)
#7 Start cardiac rehabilitation as soon as possible
#8 Stay positive no matter what
#9 Do not drink any alcohol
#10 Educate yourself on PPCM & Help others where you can
My Details
- Date Diagnosed: 29/05/2017
- Child: 1
- Initial EF: 30%-35%
- Current EF: 60%-65%
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