This is my story

[RudeKitiKatt]

When I was pregnant the first time, I had problems breathing, water retention, high blood pressure, bad nausea, and feeling horrible. The doctors kept telling me it was Asthma, and did not keep my blood pressure down. On the 30th week, I could not breath and called the doctor. I went to the doctors on that Tuesday, they put me in observation over night and sent me home. On that Thursday, they had me come in that morning, saw me and told me that they would have me go back over to the hospital. All the sudden I started freaking out, I could not walk over to the ER. Which was only down 4 floors and just right outside the office building. They brought me the oxygen, which I could not get air, and they brought in a gurney, and I told them no way I can't lay down. All I could think about is that I felt like I would pee my pants and felt like I was breathing through a pillow. BP was 220/120. They put me in a wheel chair and it took about 5 mins to get me in the ER, in a room and then I closed my eyes, every once in a while, I would wake up and see different people around me and then nothing. The next thing I remember is opening my eyes and seeing a disco in a room with a clock and hearing a clown horn honking. Then my eyes shut. Opening them again, I saw my husband and the nurse showing a picture of Charles in the NICU. He was fine and was doing great. Then I was back out again. This happened a few times until 8 days after the I went into the ER.

I had a pulmonary edema, where my lungs backed up with fluid. I was able to come off of the vent on on the 8th day and was breathing on my own the next day. My son was born at 30 4/7 weeks weighing 2 pounds 14 oz.

I went in to see the doctors to find out if I could or should get pregnant again. They attributed this to preeclampsia and said there should not be a problem next time. I ended up being pregnant again 1 year and 1 month later.

This pregnancy, was the same. Blood pressure was 180/100 by the 6 week of pregnancy. They gave me nausea medicine so I could eat this time and I went in to bed rest during the 32 week of pregnancy. The doctors pushed the c-section out to 34 weeks, 35, 36, then 37. We had Arianna by c-section that morning and stayed in the hospital for 6 more days. I was wore out and left the hospital. We went straight to the grocery store to get me some pads and drove home. I remember looking at my stairs and thinking I got to walk up and see how my husband kept house of 6 weeks. This was the 14th.

The next thing I remember was waking up in the hospital, about 4 days later in the CCU. Appearently, I went to bed on the 14th and told my husband I needed to go back to the hospital about 1:30 AM. I walked in to the ER, checked myself in while the hubby kept the kids in the car while they slept. The doctors did blood test, tested my oxygen, took a chest xray and decided they would do a breathing treatment on me. Before the treatment started my oxygen level dropped down and then I was on a vent and they were doing CPR on me.  

I have now been diagnosed with Cardiomyopathy, but not PPCM. Because it was too early in the first pregnancy. It has been 5 months since I have had her and I still can't breath properly and I still feel like I am pregnant. Still having problems like heart failure every day and it is a enormous pain.

 

[SouthernShawnee]

Hi there, my name is Heather and I am so sorry to hear of your constant struggles though I am so happy that your little ones are well and that they still have a mommy to take care of them and love them. My story is nowhere near as scary or as difficult as yours. I started having heart palpitations at 6 months which were ignored. Then I couldn't breathe while I was laying down which got chalked up to my baby laying on a nerve. I was told to lay on my left side and I would be fine...though it did not help. I started coughing at night but that was thought to be my asthma. I went into labor at 38 weeks and it lasted 36 hours and 2&1/2 hours of pushing. While I was in labor I had to be put on oxygen but they thought I was just nervous and not breathing right. As soon as my son came out my heart rate jumped to 165 BPM and I passed out from that and the exhaustion. Thank god they gave me something (don't know what cuz I was out and they didn't explain it to my mother or husband) but my heart rate started coming down and I was able to breathe again when I woke up a few hours later. It took about 3 days to get my heart rate down below 100 but once it did they let it go and thought nothing of it. The day I went home my ankles and feet swelled so bad I couldn't walk. I called my OB and she said it was just from the fluids I received in the hospital. I started getting weaker and weaker, barely able to hold my son and hardly able to breathe at night so I finally went to a cardiologist. It took about two weeks to diagnose it but he finally did. At DX my EF was at about 40%, not too low, thank God but I have yet to have another echo to determine my most recent EF. Unfortunatley I feel no better and I actually fell like I am getting worse as I have a difficult time getting this dr. to listen to me. I have not had CHF or anything else and I thank God for that but I am told there is quite a big chance that I won't be able to have any more kids. I have another echo on December 3rd so we shall know more then. I wish you the best of luck to you and your beautiful children! Here is a picture of my lil' miracle baby =) 

[RudeKitiKatt]

Hi Heather,

It is said that the peripartum Cardiomyopathy has a chance to occur up to 5 months from delivery. It is a hard roll coming down off of the heart problems. Alot of women don't get as far as I did and I am so happy for those who don't. If you are still having problems with water you need to make sure that is addressed. The more fluid, the more buildup.

With my problems, I still did almost the impossible by coming out of this without dying or a transplant. I thank my lucky stars, prayers, and everything else.

Also, give your self some time on other children. Weigh your risks, find out how your heart is doing, and make sure you have a perinatologist on board, and expect to be put on bed rest.

[SouthernShawnee]

I am also glad I did not find out the hard way. I'll admit, I'm terrified to try to have another child...I soo want a little girl, then I would be ecstatic. I would have my lil' man and my lil' woman. I am considering finding a new doc, though unfortunately, the next closest one is over an hour away, but it could be worse. This doc is telling me my chest pain is gasterointestinal and not b/c of PPCM and I'm so sick of trying to get him to understand that I know what heart burn and indegestion feel like and that is NOT what is going on. But he just waves me off and doesn't think twice about it. The pain is so bad some days that I can hardly move and I don't know what else to do. Hopefully I'll get him to listen. 

[RudeKitiKatt]

There is also the chance that there could be more than one thing.  Just that if the pain keeps up continue going to the doctor.

[RudeKitiKatt]

Well, so I go back to my Cardiologist on 1/6/10 and was feeling shitty! I was out of breath and feeling like I was gonna pass out and she said that I was not showing any signs of heart failure. So she said something about Postural Orthostatic Tachycardia Syndrome and I had decided on a cold day not to wear socks with my shoes. She looked down at my legs and noticed that they turn red. So she schedualed me for a tilt table test.

I came home and done my research and found out it is a problem with bp dropping from standing and does not come up like it is suppost to. So I am suppost to pass out when they stand me while being strapped to the table. Ya right.

So I am feeling worse and worse, bp starts at 120/80 and at night I lay down almost passing out with 109/48. So on the 13th, I go in, it takes 9 people and 1 1/2 hours to put in a IV. The stand me up at 71 degrees and the the Dr steps in and then it goes to 80 degrees. I am starting to get uncomfortable and the told me to stand still. I got hot, week, then woke up on my back, I passed out.

So now I have the diagnosis of Autonomic Dysfunction. Now I have to take meds to try to controll my nerves. So I have an answer to why it happened!!!!!!!!!!!! Yea!!!