I knew there was something wrong....
Hello, my name is Jamie and I was diagnosed with postpartum cardiomyopathy, at the age of 20, a week after the birth of my second child in August of 2000. I am going to give some detail here and there hoping that it might help someone else.
With my first child, I had a reasonably good pregnancy but I had a difficult labor and delivery. I had an epidural, my water broken, episiotomy, and ended up being packed with gauze and such. I hemorrhaged and needed three units of blood and was just insanely weak for a while. I developed tachycardia (fast heartrate) and palpitations (skipped beats) for several months after I had my daughter. I kept a close eye on my heart rate just by checking my pulse and counting it out within a minute. I decided to make sure I was ok and found a cardiologist. I was checked out and all was ok...I was given tiny dose of Propranolol to help with the palpitations. I am a small, petite person and at that time pre-pregnancy I weighed 85 lbs...gained 20 lbs during pregnancy...and post-pregnancy I weighed 77 lbs and got back up to 85 lbs where I stayed until my mid-20's.
We graduated high school and went on to college. We had a rough time in college, we fought a lot during that time. I lived stressed out and upset. I ended up filing for divorce in November of 1999 and then found out that I was pregnant in December. I took that as I sign that I needed to try to work this marriage out...we had gone three years with no pregnancy....so we stuck it out and finished college. I graduated as a medical laboratory technician and my husband as a paramedic. I was 7 months pregnant when I graduated college and I had one more summer class to attend and that would put me at 8 months pregnant when I finished my program.
Mind you, I was already terrified of giving birth again after my previous experience so I was very aware. I received pitocin with the second child's labor because they believed that maybe my previous hemorrhage was caused by weak conraction of the uterine fundus before. I was told to massage the uterus/fundus after delivery and I massaged like I was making dough. I DID NOT want to hemorrhage again!! All went pretty well. I went home to my mom's house with my husband and our almost 4 year old daughter so my mom could help while my hubby worked. I felt REALLY tired but I knew I just had a baby so I thought it was normal. I remember getting tired walking from my mom's livingroom to the hall bathroom and having to sleep a bit to recover from the trip to the bathroom.
It was time for my son's one week newborn check-up and we drove 1.5 hours to his appointment. He was doing great and we headed back home later that day. After we got home, I was going to lie down and breastfeed my son and I felt a strange feeling come over my chest. It felt like my milk was coming down- again-....heavy and strange feeling in my chest. I did NOT feel short of breath or anything...just strange. So, I checked my pulse (I was a pro at this by now...lol) and where my normal was usually upper 70's to lower 80's....it was beating at 56 beats per minute...SLOW! I rechecked it because I figured I just mis-counted or something. It was still 56 bpm.
I waited for my husband to come home and I told him (paramedic) and he counted too and it was still 56. He took me to the ambulance "barn" (we lived in a small town) and checked out my blood pressure and such. My blood pressure had ALWAYS run like 99/68 or 102/80. It was now 146/98!!! It was running high and my heart rate was running low. He took me into the hospital emergency room where he worked and had me checked out. The first physician to see me thought that I was severely depressed because I was bawling my eyes out. Yes, I was a little depressed- I've always suffered from depression- but that was NOT the issue. I was prescribed Zoloft at that point and kept over night. The doctor that saw me the next day thought that I was dehydrated so he gave me a liter of fluid IV and kept me over night. My heart rate would go from 50's lying down....then I would sit up and it would be in the 90's....and upon standing it would fly into the 120's. My blood pressure was completely opposite. It would go from high (140/80 lying down....drop some when I sat up....to 88/60 upon standing. It was CRAZY!!!
My husband made a phone call to get me into a cardiologist ASAP. I was in within a week had an ECHO and it showed my EF was at around 45%. I was first prescribed Digoxin and told by the cardiologist that it would probably resolve within 3-6 months and had no restrictions. I wanted a second opinion and went back to the first cardiologist that I had visited after my daughter. He found the same diagnosis- PPCM- but changed my medication to ACE-inhibitor- Captopril- and I took that medication for about 6 months. They had also found that I had developed a thyroid issue during pregnancy...I was thrown into hyperthyroidism. I went to an endocrinologist for this issue and was prescribed Tapazole. The cardiologist also told me that I was very lucky that I found this early because most people that he had seen or heard of having PPCM came in via ambulance or helicopter because they were extremely overloaded with fluid build-up. The second cardiologist (the one i truly trusted) told me that my restrictions were NO lifting any more than 10 lbs. Do NOT carry a wet load of laundry, do NOT vacuum the floor, do NOT lift or carry my almost 4 year old daughter and do NOT become pregnant again or I and/or the baby could die. I was 20 years old and being told..."No more children." It crushed me.
I come from a large family. I have three siblings on my mom's side and two on my father's. My mom had seven siblings so I grew up with aunts, uncles, cousins, etc. I found a way to be grateful that I had two children...one girl and one boy...and trusted that God knew what He was doing. I continued to take my meds, keep myself limited, and just try to do the best that I could. I was asked alot why I wasn't taking care of things...why was I so tired...and told I shouldn't be that tired...etc by outside people that did not understand how serious this could be. It sure didn't help my depression and it really hurt my feelings. I did not LOOK super sick on the outside but inside I was extremely exhausted and just wanted to sleep all of the time. I was actually scared of keeping my newborn son and almost four year old daughter by myself when my husband went to work. It felt overwhelming and I was scared I might pass out or die while they were in my care. It was just a very hard time in my life. I felt alone, useless, paranoid of my health and body, and scared that I may never get well.
I am currently 15 years out from that dreaded diagnosis. I am happy to say that I was cleared to go to work in 2001 after several good echos and such and have worked ever since then. I continued to have an echo a year for several years for my own peace of mind....just so I could sleep at night. I have gone snow skiing, hiking, riding bikes, etc and I have done well. I have been extremely grateful that I have made it to see my son's (the one I developed PPCM with) 15th birthday this year! I sent my daughter off to college in August and I am grateful that I was lucky to make it. I have gained weight since I was 16...shocking I know...lol. I am up to 120 lbs (for a small petite frame...that's considered on the high side) and I still worry sometimes that it will come back. I worry that my weight might trigger something but I just have to live each day and make the best of each day. (I don't always do that...but I try) I know that other stories have not had the same outcome and I hurt to know that someone is still struggling or even did not make it through this horrible thing we have all come to know as PPCM. Love to you all and prayers for those still struggling or have lost someone to this horrible disease.