…have something in common: An Enlarged Heart. I’m hoping that my heart has grown through kindness over the years, but I am referring to my heart physically enlarging. So, here’s the scoop. I am trying to spread awareness of a rare but serious condition that affects pregnant women. Do you know a pregnant lady or someone who may be pregnant in the future? Since you do, I will proceed. The condition is called Peripartum Cardiomyopathy, and it is a form of heart failure that strikes pregnant women, typically in the last month of pregnancy up to five months postpartum. Just recently a woman here in the United States died from this condition because it was diagnosed too late. Early detection and diagnosis is vital to recovery. With the available medications the survival rate here in the US is greater than 98%.
Here is my story (the short version): I gave birth to my second child – a beautiful baby girl - on July 14, 2009. I had to be induced at 39 ½ weeks because I was leaking amniotic fluid. The labor went well, and other than feeling really tired (duh, right?) I didn’t notice anything unusual until the morning after giving birth. I could feel my heart skipping beats, or having palpitations. I didn’t think anything of it really because I’ve lived with another much less serious heart condition my entire life (mitral valve prolapse) and have experienced short episodes of palpitations. My nurse picked up on the palpitations and thankfully didn’t attribute the problem to the mitral valve prolapse. Later that day she ordered an EKG. That night I had a VQ scan of my lungs and ultrasounds of my legs to rule out blood clots. I was transferred to the cardiac unit and put on a heart monitor. This was a very difficult time for me because I had to send the baby to the nursery and had to suspend breastfeeding until the nuclear dye would be out of my system. The next morning an ultrasound was done of my heart (an echocardiogram). Then the diagnosis came: Peripartum Cardiomyopathy. It’s rare, only happening in 1 in 2,000 to 4,000 live births in the United States. I guess I should have played the lottery, right? The exact cause, or the trigger(s), is unknown.
At that point I was put on a heart failure medication and had some decisions to make: Continue with that medication and breastfeed or take two different medications that would give me the best chance for recovery and not breastfeed. It really was a hard decision. One I cried over for roughly the next month. I went with the two different medications. As my husband mentioned, it is better for my baby to have a mom than to have breastmilk. The doctors at the hospital got my hopes up that maybe I’d be able to discontinue meds after a few months, so I went home with a breastpump and was pumping and dumping. Well, after a follow-up doctor’s visit and a trip to the Arizona Heart Institute for a second opinion on the whole diagnosis and treatment, I knew I would be on the meds for at least a year. Bye, bye breastpump. The real kicker in all this? I may not be able to have any more children. If my heart fully recovers, a pregnancy might be okay, but there is always the risk of relapse. I’m trying to put that out of my mind for now, but when you are a planner like me, it’s really hard to do that. I do know, however, that everything will turn out okay. I hope I can have another baby, but if that doesn’t work out we’ll consider adoption or be content with our two. I have spent a lot of time in prayer about this, and I know that everything will work out as it should.
Let me just say that even though my heart is being really slow about healing completely, my experience with this has been very fortunate. I was diagnosed very early, and I thank my Heavenly Father regularly for that wonderful nurse that caught on to this. Even though this has been a hard experience, I am so grateful to be here to raise my girls and to be able to live a mostly normal life. There are many women whose hearts were functioning at much lower levels than mine at diagnosis because their symptoms were initially attributed to pneumonia or anxiety, etc. If it takes long enough to diagnose, you could actually end up in congestive heart failure and end up passing away or eventually needing a heart transplant. This is serious stuff. The scary part is that most people have never heard of it, and most medical professionals have very little (if any) experience with it.
So, I want to include the warning signs of this condition, and if you want to read more you can visit www.amothersheart.org which is where I found the following information.
***This is the part I want everyone to take special note of. Never ignore these symptoms, and don't let a doctor brush you off if you have them! They can’t always be attributed to normal pregnancy symptoms.
SYMPTOMS:
Fatigue. Some fatigue is normal with pregnancy and while caring for a new baby, so it's important to know your body and what is out of the norm.
Difficulty breathing. This unusual (for you) shortness of breath may occur with activity or exercise or when lying down.
Swelling. Ankles, feet, hands, and face are all places fluid retention can cause swelling. In severe cases, abdominal swelling may also be present.
Palpitations, or feeling like your heart is racing, stopping, skipping beats, or fluttering.
Unexplained cough. An irritable cough that won’t go away, and not connected with a cold or upper respiratory infection, may be a clue about fluid retention and decreased heart function.
Frequent night time urination. This is from extra fluid accumulating in the legs moving into the circulation while lying down.
Chest Pain. Although not frequent, it is always possible to have chest pain, very mild or more severe. Always seek immediate care for chest pains.
Also on the website, the wonderful Dr. Fett has developed a screening tool, which may be useful to patients and medical professionals in determining the need to take further action to diagnose. Click on the link and look for the focused medical history for PPCM screening...
http://www.amothersheart.org/about_ppcm.htm#Clinical_Features
Thanks for reading! I know it wasn’t witty or entertaining like so many other blog posts out there, but I really feel like it’s important to get the word out about this. I wish you (and all the pregnant ladies you know) healthy and happy pregnancies!
