K's PPCM Story
On March, 2012, seven days after the birth of our twins, my beautiful wife K suffered severe congestive heart failure.
Pregnancy-induced congestive heart failure is a fairly rare condition. While estimates vary, it seems to affect about 1 in 10,000 pregnant women--and is fatal for up to 30%. As reported in USA Today, “the disease [often] goes undiagnosed until it's too late, because heart failure symptoms mimic those of a normal pregnancy.”
In our case, we had only been home from the hospital for 24-hours before we knew something was very wrong.....and if I hadn't experienced it first hand, I would have thought the scene had been contrived for a sappy Hallmark movie.
The front door was open to a windy and otherwise dreary Bay Area day. K was standing by the crib, arms outstretched to the babies, sobbing and saying good-bye over and over. She was in complete agony at being separated from them and not knowing when — or if — she would ever see them again. I had my arm around her holding her up as her condition seemed to worsen by the minute. My parents were putting on a strong show of it, reassuring us the kids would be fine, but choking back tears as well.
From her waist down, K was so swollen that when the acupuncturist inserted needles in her a few days earlier, water literally spurted out of the needle holes. She had also been having trouble breathing for over a month.
In fact, it was just a day earlier that the doctors had been reassuring us this was a normal post-partum condition and all-but bullying us into leaving the hospital. Having been there for six days, at one point they called us the “senior citizens” on the maternity floor and said it was time to go home. K kept saying she didn't feel good and wasn't ready, but the pressure was too much and we relented.
Now, one day later as we headed back to the ER (on St. Patty’s Day on a Saturday night no less), K sincerely thought she was going to die. Fortunately the diagnosis wasn't that hard for the ER docs, even if it scared both of us to death.
What the hell is "pregnancy-induced congestive heart failure", and how could it be "severe" if we had just left the hospital a day earlier? With no answers to almost any of our questions, they admitted her and told us she likely wouldn't be going home for a couple weeks. The next day we learned her ejection fraction was 29%....in theory aas low as it can go while still even having a chance of a full recovery.
In fact K only spent spent six more days in one of the special care units before going home, but those days seemed to last forever. I stayed with her each day while my parents watched the kids. We kept a web cam in the crib right next to the kids so that K didn't miss a heartbeat as she watched from her laptop in the hospital.
In just one of many moments of tearful awe, I watched K soothe the kids--remotely via skype--when no one was in the room with them. She was also able to sing songs to them in Japanese and participate in the nurse's home visit. We even put a piece of K's clothing next to the kids so they would remember her smell.
After K came home, she was on an array of heart medications, as well as fluid, salt and dietary restrictions. She was super disciplined and lost all her pregnancy weight within 13 days from the birth. (K’s base weight is 99lbs, she was 142 when she went into labor, and gave birth to 11.5lbs of babies.)
The only other thing that K had to do then was rest. That's where the love and support of innumerable friends came in. With the help and love of a LOT of people, K was able to rest as much as one can with newborn twins. Wonderful volunteers brought meals, looked after the kids, and just helped out with whatever we needed.
We finally went back for testing three months later and to our delight, the doctor called us back that night all excited, if not surprised. K’s heart was already back in the normal range (EF of 66%). She was, as they told us, one of the lucky ones who had made a full recovery. My beautiful wife was going to be ok, and I was finally and proudly able to report to our friends: MOTHER AND BABIES ARE DOING FINE!!
As of this writing (nine months) she's infinitely better. She's still exhausted, but PPCM is a major cardiac event even with the best outcome, so that's to be expected. She's going back for at least one more echo cardiogram tomorrow, and hopefully she's improved even more.
I wrote this short summary of these events for a few other reasons:
(1) I want to raise awareness about this condition. While many women fully recover from PPCM, many end up with partially or severely damaged hearts, some have to get transplants, and tragically, a significant number die. The crazy thing is, I see no reason PPCM can’t be detected with greater awareness and some non-invasive testing. Specifically:
+We were at Alta Bates hospital in Berkeley, CA. They have the second highest number of child births of any hospital west of the Mississippi. Yet even there they only see this condition once every 2 months. Many smaller hospitals can go for years without seeing it. At Alta Bates, PPCM clearly wasn't on anyone's radar....and we had many many doctors and nurses helping us out. Clearly there needs to be more education that this is even a possibility to be considered!
+When the shortness of breath doesn't get better and edema don't subside, a simple chest x-ray will show the amount of the dangerous fluid back-up in the lungs (and thus heart). A second x-ray a few days later can be used to confirm whether the condition is getting better or not. This is a low cost item and non-invasive.
+Doctors have to be especially careful when the edema and breathing issues don't subside and they put their patient on a diuretic. This can mask the fact that without the diuretic the build-up would have continued and, in our case, we would have still been in the hospital and known something was wrong days earlier. Instead, they simply took her off the diuretic the day we went home, and that created the crisis 24-hours later.
+It took the ER doctors about 45 minutes to make a strong (and accurate) guess that PPCM was happening. If it was that easy for them, there must be other things that can help diagnosis PPCM as well!
(2) The hand-out our hospital gave us for dealing with PPCM were focused on life-style induced cardio-myopathy and included things like "how to stop smoking", at which we would have laughed it we weren't to busy crying. Simply put, they didn't have any information that was helpful for an otherwise healthy, high-motivated patient that didn't get this condition after years of ignoring their own health.
(3) If you get PPCM, I can't recommend enough: Try and find a cardiologist who specializes in PPCM. They are rare, so it won't be easy. But we discovered that for many cardiologists, when they see PPCM at all, it is typically life-style induced. Thus their experiences with PPCM are rare--even though they kept telling us that the treatment protocol would be the same.
--Of particular importance, there are medication options where you CAN continue to breast-feed!--
In our case, the doctor not only didn't know this.....he actually lacked any understanding as to why it was important to my wife to be able to continue to do so. With a complete absence of bedside manner, he simply informed her that her breast-feeding days were over. When I later challenged him on this based on information I received from a number of highly reputable sources, he literally threatened to not give my wife one of the critical medications she needed to save her life, since to do so, in his mind, would put the child at risk!
Needless to say, he was summarily fired, and thanks to the advice of an Alta Bates nurse, we contacted a cardiologist at UCSF who specialized in PPCM and who analyzed and treated K differently than our original cardiologist. She also was able to answer all our questions and simply had a very heightened sensitivity to K's condition as a highly-motivated otherwise healthy new Mom.
(4) To all my pregnant (and soon to be pregnant) friends out there, I want to encourage you to never doubt what you are feeling in your body, no matter what a doctor tells you is normal. Heck....this really goes for everyone!
Finally, I want to take this opportunity to thank everyone who visited K in the hospital, who brought us food both in the hospital and at home, who came and looked after the babies, who even just offered to come and look after the babies, who prayed for us, who had their churches pray for us, and who called one of us to offer support. Your service gave K the chance to sleep and rest as much as she could, and I have no doubt that was a huge part of her recovery.
I want to give special mention to my Mother and Father who jumped in with both feet during the crisis and then stayed and worked tirelessly for two months....as well as K's Mother who then came and took over for another two months. We also received incredible support for a large number of nurses and doctors throughout (but especially the nurses).
In short, I feel so humbled to have been in the presence of such grace, I cannot even start to express the extent of my gratitude.
For an eye-opening story on pregnancy-induced congestive heart failure, please go to the article at: http://www.usatoday.com/news/health/2008-03-12-pregnant-heart_N.htm