A Mother's Heartfelt Journey
In 1988 I gave birth to a beautiful baby girl, Amber Elise. She was 14 days late and I was in labor for 17 hours before the doctors decided to do an emergency C-section because the baby showed some signs of distress and Momma was too. The surgery went well, even though at one point I was desperately begging the anesthesiologist to listen to me, saying "I could not breathe".. he ignored my pleas... so I figured it was only from the epidural/ saddle block that I had received and I thought all was fine.
I was dismissed from the hospital only to get home and 2 days later my chest felt heavy and I was extremely tired... I overlooked it because I had just had surgery , I was supposed to feel tired and uncomfortable. I had called my OBGYN to report my "as if I needed to burp, but couldn't" , a heaviness... in my chest feeling, and they told me to drink a warm coke. .... At my one week post op visit however my doctor decided to take some notice when all was taking was small shallow breaths and apparently after checking, my oxygen level in my bloodstream was at as he put it....." uncomfortable levels. (numbers in the 70s.) " They told me I should go the E.R. There , I was hooked up to every monitor and what seemed like every test performed on me I was there for two weeks and was never given a proper diagnosis. Perhaps pneumonia or a blood clot that dissolved itself. I started to feel better after being propped up in the hospital bed on bed rest and on oxygen .... I was 21 years old I had been without my new baby and I wanted to go home..... They let me. ...I felt as though it took a year or more to get some of the energy I had back to where I was before I became pregnant... doctors told me that was normal after having a major surgery.
Ten years later with a new marriage, my husband and I wanted to have a baby together. And after trying for 3 years we were finally blessed with a pregnancy. My OBGYN was glad I got pregnant when I did... I was 35 years old now and time was ticking on my biological clock. We discussed my post partum episode from my previous pregnancy and he made a note of it in my record... He told me he even sent away for my old records, which he said he reviewed, and did not seem at all concerned. I had an uneventful pregnancy and had an early morning scheduled C-Section performed on August 24th 2001. We had a beautiful baby girl, Taylor Jane.
That night in the hospital I woke up in the middle of the night with what I thought was a panic attack, of which I had never had before, I could not catch my breath or lay down. I got through the episode. propped up in the hospital bed , with a fan blowing directly in my face... The night nurse told me it was fluxuating hormones. And when I told the doctor the next morning he said it was probably nothing and released me.
I went home and instead of feeling better I seemed to get worse. I could not lay down to sleep. I could not take 2 steps without having to sit and catch my breath.....I had difficulty picking up my newborn and so, she was handed to me as I stayed seated.... I noticed when looking in the mirror I seemed fatter than I was when I was pregnant.... I had a humidifier in my lap trying to breathe.... My husband , bless his heart, was a little confused, he was like....... should you be this bad off?... But when I talked to my doctor he would say that all sounds perfectly normal after surgery and he was sure that I was okay..
I was able to convince him to see me in his office and my husband took me ....By this time my chest sounded like it had Rice Crispies popping in it. The OBGYN, listened to my heart, and again he said I was fine and made me feel like I was a whiner, like I was overly sensitive or something...he gave my antibiotics just to reassure me ... I thought it was pneumonia.
Ten days went by and I was miserable I was trying to breast feed, my husband and 13 year old were my only support...(Neither of our parents are alive) and he was due to go back to work ... I had a 13 year old who needed me..... I was freaking out... I broke down and told my husband something was not right and I wanted to see another doctor. I still only thought I must have had a bad case of pneumonia...
It was a holiday... Labor day........ NO doctors open. We drove all around the city trying to find a corner Urgent Care cause I did not have an general doctor. Never needed one... I was always healthy... Finally found one about 30 miles from home. I sat in the doctors waiting room for three hours to be seen while my husband sat in the air conditioned truck with our newborn.... I finally got back to see the doctor... I told him my symptoms and he took a chest x-ray, and poked my ankles.. I thought that was strange to diagnose pneumonia, but he told me nothing except I should go to the E.R. and sent me straight there and told me they would be expecting me, and the E.R. did get me straight back ...
I was hooked up to every monitor and what seemed like every test in the world performed on me I thought , "here we go again" but this time they came back... and said, I have PPCM....Peri/ Post Partum Cardiomyopathy..... It was a very rare heart condition, which causes your heart to not pump correctly and your heart fails and you are in Congestive Heart Failure it can shut down your other organs as well...and that it is so rare that only 1 and 10,000 women have this .... They are not sure what causes this... could be an underlying heart condition that pregnancy can trigger.... or an autoimmune disorder...not enough research or knowledge about why it happens... and YOU should never have another child was greatly stressed.... My E.F. was at 10% and they were not sure if I would respond to the medicines and be okay......or if I would survive the night... and that I most likely would need a heart transplant.
My husband and I were stunned... I remember my first thoughts were.. My children?... How could I not be here for them?.... How can I not see them grow up?... And my husband... How can he raise them all by himself ? And oh... but will my daughters be split up, will Amber not be a part of Taylor's life ? All the hopes and dreams and wants and decisions I have struggled with, and prayed about, and worked for all my life.... what do they now mean?.... What would become of them? And..... I'm not ready to die..... I have found this wonderful man to spend forever with ...and my friends and family... do they know how much they have meant to me? All of these thoughts are flowing through your mind and it all happens in a what seems like a flash.. then reality sets in... and you just decide... No... I'm not gonna let this happen... I'm gonna be okay..... and by the grace of God.... the medications worked ... I lost close to 40 lbs of fluid overnight and my EF improved to 25% by the next day...
My husband was so strong... he was my rock... I didn't break down... because he didn't.. we just listened to the doctors and relied on their expertise to make me better... that is all you have in that moment... Hope.
This diagnosis did and has changed my life.. I was on all the meds for a year... lasix, beta blockers, ace inhibitors, potassium, no salt,. My EF in a year went to 55% which is considered... low normal.. I was released from my cardio doctors and taken off all meds.... I have always tried to live life with the intention that PPCM/ CHF is not going to define who I am.. I try to do as much as I can, when I can, and have done so for many years.... I have been to my yearly general doctor visits... I have dealt with other medical issues had a complete hysterectomy and lived pretty much symptom free for a while with a EF of 45% for much of that time. I have learned it isn't always about the numbers ... it's about how you feel......... I have since learned that though still considered rare..... PPCM is not rare at all.. but seems to be misdiagnosed, quite often... now statistics lean more to 1-1500 women having and being diagnosed with PPCM.. PPCM is defined as a as a form of Dilated Cardiomyopathy in which no other cause than pregnancy, of heart weakening can be found...
Unfortunately, I have recently relapsed.... not from pregnancy... back with the Cardio docs... many tests later... still no definitive answers as to why I relapsed.... I do have some familial heart problems , my father passed with heart issues ... there is still a lot of unknowns with this condition... but we continue to make strides to get this information out there and more research and medical advances and treatments are happening daily... back in CHF... My EF is now at 30%.. back on the meds for life .. but still have great optimism for a wonderful future! My husband and children, and the Grace of god, and of course the original PPCM website and forums got me through it all. And my Facebook Heartsisters Group....found under....Peripartum Cardiomyopathy (PPCM) Survivor Support... My new mission is to make people aware of the signs and symptoms of PPCM and Congestive Heart Failure in general... I have even made an Awareness video and put it on YOU TUBE...called... PPCM AWARENESS PROJECT....please watch and share with everyone... to spread awareness of PPCM... maybe someday PPCM will get a mention in the Expecting pregnancy books..
I feel very fortunate to have gone through this twice, the first time with no meds. .... I Thank the GOOD Lord every day that I can be here with my caring husband and my two beautiful daughters, family and friends... who I let know every chance I get, how much they are loved and truly mean to me <3
Been diagnosed with autoimmune disorders /Mixed Connective tissue disorder with an emphasize on Lupus and POTS/ Dysautonomia
5/25/2017 flash edema episode/hospitalized _placed on Entresto ef <30%
8/31/2017 Heart Ablation surgery