Informal Polling

[admin]

Trying to get some information on diagnosis times....

[SerenaWelsh]

Missed by 2 OBs and 2 ER docs.
First opportunity to diagnose was Feb 2002, so missed for a total of 2 years, 1 month.

[steph]

I was misdiagnosed for about 7 years, from the birth of my son until the birth of my daughter. The main person who missed it was my first OB. Knowing what I know now, I had ALL of the clinical symptoms. After my daughter was born I went to 8 doctors before I referred myself to a cardiologist (against my PCPs guidance). Over the years I talked to about 29 doctors about my symptoms and was diagnosed with bronchitis, asthma, exercise-induced asthma, post-partum depression, etc.

Steph

[mom2gageandkeely]

My original Ob was out of town when I delivered, I saw a multitude of Ob's that dismissed me as pnemonia, went back to an Ob 3 days later and was told I couldn't breathe because I was "obese". My Ob nurse ( Ob was still out of town) insisted that I be treated for my illness and wheeled me down to Er where I was misdiagnosed for another 72 hours. My "obesisty" turned out to be 53 pounds of excess fluids which I lost in a matter of hours after a diueretics.

[christyh]

missed by OB and nurses at the hospital, I dont think I started developing ppcm until the last month of pregnancy, and by then it was just so hard to tell what was normal pregnancy swelling and what was not. I even thought it was just the pregnancy. After giving birth, I questioned several nurses about why I was swelling so much and couldnt breathe good. They also said it was just part of being pregnant and post partum symptoms. But after going home and being so sick for 4 days I called my ob, who made me come into the office right away, and after taking a look at me sending me straight to the hospital. I do not have ill feelings toward my ob, mostly toward the one nurse at the hospital who told me I was fine and should just go on home, that I was just older and this sort of thing happened all the time. Pretty much like I was stupid and did not know my own body.

[dawn]

I was diagnosed 7 days post-partum. Looking back, I'm sure that I was in heart failure from immediately after giving birth. My OB told me I had "new mom anxiety". By the time I got myself to the ER, I was in end stage CHF (drowning), and I had thrown 2 clots.

In short: ignored and called crazy by my OB, dx made in ER 7 days postpartum. (do I still sound a bit angry about that? Trying to let it go...)

[SarahsMom]

YES and NO.......?

I don't know how to answer this one...it's not cut and dry for me. The last month of my pregnancy I kept going back to my OB with REALLY swollen feet /ankles and legs (weekly)...I just had a very strong feeling that the swelling was not normal. They kept telling to go home and and put your feet up...after hours of having my feet up, the swelling continued. I called again, and again and again...after (3) weeks of this, I demanded that someone give me a logical answer as to what was going on, it was at this visit that I saw another OB in the practice that said my blood pressure was high (140/90) and he continued to take the blood pressure every 15 minutes for about an hour...NO CHANGE...he said I'm admitting you to the hospital for observation (He was one of the doc's that I feel saved my life)! They induced (2) days later and within 24 hours after delivery I woke up not being able to breathe. I called to the nurse (saved my life #2) who in turn called for an INTERNIST - STAT!!!! The internist figured it out (swollen feet/ankles/legs....difficulty breathing while laying down, just delivered a baby...UMMMMMM, I think this is your heart! - The internist in my eyes is my ANGEL....he saved my life...although the OB/Nurse were all critical people in the diagnosis.

Does this help....I guess I would say YES...I was diagnosed properly.

Kari

[Laurie]

I wasn't diagnosed until I was in liver and kidney failure. I was kept in the hospital 8 days post delivery and was seen by a neurologist, ob/gyn, and psychiatrist. Never once did I see an internist or cardiologist. I was discharged after 8 days and sent home. I went back 3 days later for 8 weeks!!! Prior to delivery (3.5 week before) I collapsed at home in a fainting spell. I was rushed to the ER in an ambulance with an irregular heart beat...was totaled I had dehydration.

Looking back I cannot believe how blind my drs. were. I had virual pneumonia and respitory failure at 23 weeks. I was followed by an army of drs....perinatologist, ob/gyn, infectious disease specialist and pulmonologist. Not one dr. picked up on what happened!!!

Laurie
PPCM 2000
Mom of b/g twins

[heidiross]

Iwasn't diagnosed with my first pregnancy. My OB thought it was from all the meds they had given me, or an allergic reaction. After my second, it was a fairly new family practitioner who had a chest x-ray done first and noticed the enlargement then the echo etc...



Heidi

[tabs]

At In pg1 I gained 11lbs in month 5. My doc said that it was ok since I had not gained anything to that point. Next month I gained 8lbs and the doc said "no more big weight gains". Every appointment after that I continued to gain a huge amount of weight. My legs were swelliing all the way into my thighs. I was short of breath, my face was swollen, ect. My doc asked about my face, but never did anything. I delivered 2 weeks late with PIH (190/110) and about 80+lbs more then pre-preg. I sat up everynight after delivery because it was more comfortable. I was short of breathe on exhertion, but then who isn't when they are still carrying 30+lbs at least that is what I thought.

Pg2 was much easier, but I gained 20lbs in the last 10 weeks. I sat up again, but didn't thinnk anything about it after my first. I continued to be short of breathe on exhertion.

Pg3 I had an echo done at 12 weeks. It had been booked for a baseline examine of a murmur prior to my becoming pg. It was discovered then that I had an ef of 43% and possible old blood clot in the heart. The cardiologist felt that I had PPCM, but could not be sure due to the earliness. That is probably what saved my life as it was my cardio who decided to holter me after my family doc said the palps were normal even though I was symptomatic. It also saved my life as it caused me to actually go to the hospital with my cough 7 days post partum. It turned out that my ef was 7%.

Twilah

[LaReine]

I was very lucky that the ER cardiologist on duty was very young (my age) and very smart. I was diagnosed and treated very quickly. Needless to say, he is still my cardio. It's funny, at the time my husband thought he was too young and wanted me to have an older doctor. I think I might have been in the "no" category if that was the case!

[mikki]

i believe that i was missed during my pregnancy from about 6/7 months to 10 months I had signs that were ignored... pitting edema, very high HBP, irregular weight gain-to the point of being sent to a nutritionist... i was not getting fat because i ate too much... i was swelling all over.
for the last 3 weeks of my pregnancy I went in every day or every other day to be monitored... i would lay there for hours while they tried to "let my blood pressure go down"... and after it went down... they would let me go.

i was diagnosed 4 days after the birth of my only child by the Nurse Midwife... my OBGYNs were too busy to see me... i'm still a bit bitter if you can't tell... i'm trying to live on and let go too.
thank goodness someone listened to me!!!

[marissar]

I went to the labor and delivery 4 times in my last week of preg, and was dx when baby was 5 days old. I was in the last stages. I t is now believed it developed in the last week or two of the preg. So alot of people missed it if that is the case.

[Yvonne]

The day after my delivery I became very ill. High fever, shaking in my bed, high pulse rate. In the hospital they took blood and told me I was almost in septic shock, but they didn't know the cause of the sepsis. After one week and a lot of antibiotics my gynaecologist told me it was caused by a streptococcen infection. In my formal letters from the hospital (I read them three months after) was only written streptococcen negative (not found), but my CRP was skyhigh. After this I saw twice a doctor and twice a midwife. I told them all I was very tired and dizzy, especially after walking stairs or distances. Nobody took my bloodpressure or my puls, so they didn't know my bloodpressure was very low and my heartrate very high. It was just because all I went trough, normal for a newborn mother, they told me. Then I moved from the Netherlands to the UK (two months after the birth of my son) and saw again a doctor. Now because I couldn't sleep at all, was coughing, etc, etc. He tought I was really stressed and had hyperventilation and wrote a letter for a shrink. I never went to see the shrink because when I really became out of breath and my lips turned blue and my legs were swollen, I went straight to A&E. There they thought immediately on cardiomyopathy, for sure when I told my father had it. One day later, after an echo, they told me the final diagnosis and that my heartfunction was really bad (EF<15%). Just before a doctor of internal medicin told me it was just a pneunomia, but I had to do the echo, just in case. So three months after the birth of my son I finally knew I had PPCM. That's now a half year ago.

[mikeyandBellesmommy]

i AM IN THE UNDIAGNOSed catagory. Mine started around 34 weeks with Belle just slightly at first elevated BP when walking and the sweating, by 37 weeks I couldn't walk at all, I was steadily gaining about 2lbs a day I couldn't lay down, I had the cough, and couldn't breath, according to the ob, the triage ob nurses I was a nag, there was nothing wrong with me, I had a big baby and I was only 5;0. They told me in very rude tones that they would not take a baby because I was too uncomfortable, Uncomfortable was an understatement if you ask me. Finally at 39 weeks they took Belle because my MOm went crazy still UNDIAGNOSED, WENT through 16 hourso f labor with an ef of 18%, pushed for three hours and then had a csection. that day at 630am I started dying and was diagnosed when they called a cardio in because I was blue..

[SusanD]

My answer would be both yes and no....my new cardio diagnosed it right away of course. My high-risk obgyn/perinatologist, however, missed it for a whole week.

[clairevoyant]

Missed by medical doctos in hospital for one week, ended up in intensive care before diagnosis

Claire

[Karen T]

My OB-during last weeks of pregnancy
My OB-after pregnancy referred me to PCP who sent me to Urgent Care
Urgent Care doctor (Pneumonia)
Finally ER doctor figured it out and admitted me (Saved my life!!)

[momoftwoboys]

I marked yes (by OB doc), but am not totally sure about it (as most of us are). I remember having the same feeling (immediately following the delivery of both of my babies) where, on my first trip to the bathroom, I couldn't breathe and had to sit down in a chair on the way. Of, course, I thought this was just "normal" and just dismissed it. My boys were only 21 months apart, so I sometimes wonder. I also ordered my own tests after not being able to sleep and having absolutely no energy or appetite for a week after my second son was born.

[amyls]

I was being watched for preeclamia, it went to eclamsia and my kidneys started to shut down, I had an emengency c-sect at 35 weeks. When the preeclamsia didn't improve I was tested for everything. They had me tested for PE, and pnuemonia and everything else. Finally after a week cardiology came down at my OB's partner coaxing, they weren't supposed to come down until Monday, so after the ECHO they found the PPCM. I was put up on the CCU and the rest is history. So yes..I was not initally diagnosed, but they were trying to find out what was wrong form day 1.
I should also add that at 28 weeks I had an ECHO and it was normal, so I think they felt that was an avenue not needing to go down.

[momofthree]

Gained 10 lbs in the last month of pregnancy (delivered at 37 weeks). My face, neck, hands, feet were very swollen. I had read on line that this was not good but b/c my blood pressure was ok I thought I was ok. No murmur detected before discharge post delivery. I lost all but 9 lbs within 2 weeks following birth. Odd since most kept or put on a lot of water weight. Went to the doc about 2 weeks after delivery with cough, severe sweating and crazy fatigue/lightheadedness. He stared at my x-ray and consulted another doc. He just did not seem settled. But he was new and followed the other docs opinion. I had right basilar rales (sp?). Went home and continued to get worse. The sweating was all day long and night was full of changing clothes because I was soaking them. Felt as if I was shutting down in all functions. Major fatigue and muscle weakness, SOB, sweating and a cough. I was vomiting, dry heaving, could not eat and had diarrhea. Went to the ER where I was told I would be in and out in an hour as I was just having a panic attack or something. I was floored by how I was treated. I have had plenty of opportunities to panic and never had and knew this guy was a joke. The ER doc thought I was dehydrated, pumped me full of 3 L of fluid and I could not breathe. Then I was about to panic. He did a chest xray but said he did not see anything. Gaffed me off and just kept giving me fluid. After about 12 hours in the ER, an internal medicine doc came and saw me and immediately said I needed an ECHO based on my symptoms, their onset and severe jugular venous distention. He said I did not present with pulmonary embolism symptoms but rather heart failure symptoms. Thankfully he had heard of PPCM before. The ECHO revealed it to be so. Off to the ICU.

[SerenaWelsh]

Isn't it amazing that 66.6% of us weren't diagnosed immediately when we clearly presented with symptoms? That would be an interesting statistic to throw back at the doctors who keep giving us the 33/33/33 stats.

[elizabeth]

I wasn't able to cast my poll vote on time but. I was mis-diagnosed both times. The same as all of your storys, too fat, your susposed to feel that way ,pnumonia , stressed, depression, panic attack etc. etc. etc.

Finally a good ole' what I like to call " Doc in the Box, " one of those walk in type clinics, doctor saved my life when he sent me straight to the E.R. I sent him a box of chocolates!!! lol.

[Special K]

Yes, My diagnosis was initally missed.