New To All Of This.

[Delores]

I am relieved to have found this site. I am just one week out of the hospital with all the symptoms of PPCM. My DS was born 8-2-5. My doctor/card wants me to wait three months and do a follow up echo before trying to diagnose me with PPCM. He says there is just not enough info at this point. Is that accurate? My original echo showed some moderate enlargement to the left ventricle, but curiously also the upper and lower right ventricles. Is this normal with PPCM? Also, can I take anti-anxiety drugs while waiting for correct diagnosis, or is it better to try and work through the fear? Thanks for your help. I'm glad that you have made yourself available to us.

[jmonte]

Hi Delores- I'm so glad you found us! I'm sorry though for what you're going through. This is a great place and the fact that you found us so early should be really helpful to you. I didn't get accurately diagnosed until I was 9 mos pp. What were your symptoms/what happened to you? What's your ejection fraction? RE: anti-anxiety drugs. That's a personal decision but I will tell you that once I started one, Celexa, my life became DRAMATICALLY better. I stopped crying, obssessing, and being so negative. I was a better mother, wife, friend, etc... I just couldn't deal with the stress and the sadness initially. I was able to go off the drug about 9-12mos later. If you aren't breastfeeding (or even if you are, there may be some that can help you) it might be worth looking into as least as I believe most take about 4-6 weeks to take effect anyway. They called it situational anxiety/depression and I am so grateful there was a way out of it. Don't listen to Tom Cruise!!! Look forward to getting to know you further! Julie

[Lisa V]

I would likew to WELCOME you to this wonderful site of amazing woman and their lives and stories. I do not know how to answer you about the anti depressant medicine since I choose to work through it myself and to talk openly about my disease with my husband and family. To me talking and accepting my illness was the right path for me. I do hope that you start feeling better soon. Why is it that your Doctoir is waiting 3 months to correctly diagnosis you? Are you curretnly going to a CARDIOLOGIST? Are you on any medication yet? One of the things I would find out from your doctor is what your EF ()ejection Fractor ) is? Please let us know your answers and maybe we can help alittle bit more.

[SusanD]

Welcome to our site and sorry you had to find us. While you are waiting for the PPCM diagnosis, did he put you on any other meds ?

[melissamph]

HI there. Susan and I are nurses as are a couple of the other ladies here. First I would like to welcome you to a site that should provide you with comfort and answers to whether or not you are going to get better. YOU ARE! I would like to inquire about meds as well. I believe what helped me recover so quickly is that I was started on meds right away. Did your doc tell you your EF? Also, you must see a Cardiologist as they are the most inept on PPCM. Welcome and know we all have been there in the beginning. We are all here to help you understand and to reach out for your future. It is going to come! Prayers to you and your family!

[JAMESFETT]

Delores, here's hoping and praying for complete healing. Your doctor has perhaps told you that the criteria for a diagnosis of PPCM are:
1)new onset heart failure between the last month of pregnancy and 5 months following delivery,
2)no previous heart disease,
3)no other reason for the heart failure.

Confirmation of diagnosis of PPCM is by echocardiogram, showing left ventricular systolic dysfunction (low heart output with decreased ejection fraction--EF)and enlargement of the left ventricle (end-diastolic dimension--EDD).

The ladies on this support network are extremely knowledgeable and helpful. If I can help you (and your doctor) in any way, please let me know. I deal with ppcm issues and patients in a number of geographic regions.

James

[JAMESFETT]

P.S. to Delores: early treatment, however mild the PPCM may be, is extremely urgent because there is good evidence that early effective treatment (diuretics, ACE-inhibitors, Beta-Blockers) improve heart function and interrupt the process that leads to heart failure in the first place.

James

[Delores]

I was so desperate to talk with someone about my condition. Thanks to all of you for your support. This has been the oddest week of my life. I'm celebrating a new life, while dealing with the possibility of losing mine. Just to give you guys the facts. I am 32 with a nine-year-old son. My husband and I decided to have another baby because we weren't getting any younger. I had a mostly uneventful pregnancy except for a few palpitations early on. I've always dealt with palpitations, so I wasn't too upset. Cardiologist wasn't in the least bit concerned at the time either. However, I started swelling terribly towards the end, but still no concern from the OB. Developed carpal tunnel, which still bothers me, but not related to PPCM evidently. A few days before my scheduled "C," I started having shortness of breath. OB still not concerned. I delivered my DS on 8-2-5. He weighed in at a very healthy 9 lbs 6 oz. Curiously, a lot of the women I've read bios on seem to have large children as well. My swelling did not go down, and I continued to feel vaguely uncomfortable while breathing. OB still not concerned. I asked to be released a day early, as I was biting at the bit to get home to my family. No problems. I came home on Thursday, and all seemed well. Over the next few days, my shortness of breath seemed to increase. I thought for sure that I had developed pneumonia. My DH drove me to the hospital Sunday morning 2 AM. I was gasping for air. We arrived at the hospital where they stuffed me with IV antibiotics after viewing my x-ray. They seemed certain it was pneumonia as well. They decided to do a CT just to rule out pulmonary emboli. After the scan, the ER doc was pretty sure that I had PPCM and sent me for an echo. My EF was 58%, with some enlargement to the left ventricle, as well as the right ventricles. I'm sure all of you know the panic and fear that set in with this diagnosis. The doctor started off with the diagnosis of congestive heart failure, and that is all that I heard for the rest of the discussion. I was absolutely devestated. I thought that I was going to die within the next few days. I was obsessed with who would raise my children. My hormones didn't help me to deal well with what was going on either. I have been in and out of the doctor's office this week. They put me on a water pil, and Cozaar. Anyone else on Cozaar? Also, a co-enzyme for heart energy, and Clonazapam as needed to deal with the anxiety. With a new baby, and this diagnosis, I wasn't sure if I was going to have the strength mentally, or physically to deal with the situation. However, I really felt it urgent to find other women who are dealing with this same condition. The bios I've read make me almost ashamed of my own emotional turmoil, but they have helped me put things into perspective. I can't thank you enough for sharing your stories. I do believe they are the first step in my healing. P.S. The Cardiologist told me not to worry. Should I believe him? lol. Also, I saw my family doctor today. He assured me that I would get better. He is treating me for asthma, fluid, and blood pressure.

[jmonte]

Delores,

If I am reading your note correctly and your 58% Ejection fraction is accurate, how could they diagnose you with heart failure? Most of us would LOVE a 58% EF!! That's awesome! Was it worse early on and has corrected itself to 58? My understanding of Heart Failure is that an EF of 30% or below is the criteria. I'm glad you are finding answers and comfort here- we all know how you feel...Julie

[melissamph]

Wow! I have never heard of a PPCM diagnosis with an EF of 58%! I too have Carpal Tunnel after the delivery of all 3 kids. It comes and goes and generally just is a pain in the wrist but doesn't cause me any real issues. I wish you well!

[JAMESFETT]

Good luck in sorting things out. If your heart function with left ventricular ejection fraction of 58 percent on echo is correct, one would be really hard-pressed to diagnose heart failure, and for a diagnosis of PPCM, generally accepted criteria for the diagnosis would be an EF of less than 45 percent. Perhaps it was less at some point in time? Perhaps your blood B-type natriuretic peptide (BNP) was elevated?, also compatible with ventricular heart failure. Or perhaps it was normal, tending to confirm that you did not have heart failure? Well, I'm sure it will all sort itself out eventually, and I for one am much more reassured that you are on a good path. Indeed, asthma and/or pneumonia may well be your diagnosis.

James

[Delores]

Yes, 58% EF. At the time, when they were talking heart failure, I didn't know that my number was actually considered to be quite good. The only thing that I was told, and could remember at the time, was that my heart was failing, and that 50% of women recover from this condition. I'll never forget the fear that rose up to choke me. I kept asking myself about the other 50% who didn't recover. I can't begin to imagine the pain and fear the women of this board have to live with day in and day out. My doctor assures me that my prognosis is good. I still break into sweats thinking that my heart may not recover, and may even get worse over time. The low-sodium diet, medicines, and doctor visits are all so alien to me, but well worth it for a positive outcome. If this taught me anything, it is to cherish every precious second of life. Hug and kiss the people you love, and to make a difference daily in the lives of your children.

[tinabowen]

I had a EF 40% and went into heart failure my BNP was 906 so it can happen with EF over 30%..I lost 62 pounds of Fluid in ICU..

Delores, You could of had extreme fluid overload that caused the CHF.
Take it easy and try not to worry to much about death they are several ladies on her that had very low EF and are still with the living.

Tina

[Nails]

I could be mistaken and certainly it could have been a typo, but I am under the impression from my doctor and this website that and EF of 55% or better means you are recovered from heart failure. For your sake I hope it was not a typo and that you are A-OK!
Please keep us posted.

[natalies73]

Deloras,
I am praying for you! I have a 10 yr old son and a 7 month old daughter. The age difference is big, but it is a blessing because he helps me out all the time. Please keep us updated. :)

Natalie

[Delores]

Thanks for the encouraging words. I am moving more away from the fear, and on towards total recovery. It was just a totally unexpected occurance in my life. I bought term life insurance today. I'm also making an appointment with the lawyer to make a will. I'm not burying myself, but wow, this really made my DH and I think of how bad it could have been.

Does anyone follow a low sodium diet? Anyone smoke? Overweight? I'm down to 10 cigs a day. At least one good thing came out of this scare... I'm looking forward to being nicotine free for the rest of my life.

P.S. Carpal Tunnel Syndrome stinks. I would love to feel my fingertips again, lol. Also, this Cozaar is kicking my butt, lol.

[Lisa V]

I would say that you are already on the road to recovery or even recovered with an EF of 58%. I am 5 years out and still am not at 58%, my EF at diagnosis was 10% and they never thought I would reach 35%. It sounds as if you are doing great and should continue with being cautious. I was and am still on a low salt and low fluid intake, I cant not eat more then 2000 mg of salt a day and my fluids can not exceed 1 qt a day. I can tell instantly if I have had too much salt with my upper belly and my fingers. When I do retain salt I just drink plenty of water with lemon to flush it out. Positive thinking always gives positive results and you need to stay on the wave of thinking, you will be here to see your children gorw up and they chances of you dying from PPCM are probably much lower then you dying from something else, at least that was what my doctor told me after I reached 35% EF. Majority of the woman on here who have tried to get life insurance were DENIED due to our illness so if you got approved they must consider you recovered or not in very bad condition at all. Even after 5 years and an EF of around 45% I still can not get approved for life insurance. Glad to hear that you are starting to feel better.

[Delores]

Hi Lisa. Thanks for the advice on salt retention. I'll try the water with lemon. My upper abdomen does seem to swell with water. Very odd feeling. I applied for term life. I haven't been approved as of yet. I tried for the "No Exam" insurance. We'll see what happens. My DH and I just bought a house, and I can't imagine leaving him with all that debt. Thank you for encouraging me to live. Your words have brought me comfort, believe me. I still have moments of panic. Especially when I feel like my knees are floating in water. I want my heart to take care of business. I know that only two weeks ago I was drowning in my own fluids. Thinking of that brings me right back to dealing with the paralyzing fear of dying, or really, not being there for my kids. One of the ladies mentioned that the CHF may have been a bi-product of retaining too much fluid. I love this suggestion, and hope that it proves to be true. I've read other posts and I am amazed at the courage a lot of these women show when it comes to dealing with this condition. Serena is one tough cookie. I hope all of you have a good support network. I wouldn't have made it through without the love of my mother & husband. My 9 year old son starts back to school this week. We went shopping yesterday. It was great to do "normal" stuff again.

[Delores]

Natalie, thanks for your prayers. It is nice to have the age gap. My son is loving being a big brother. He will change pee diapers, but he won't feed, or hold the bottle for him. His arm goes numb, so he says, lol. He told me yesterday that he was glad Kasey was here because he would have to do half the chores. I didn't bust his bubble with developmental stages of kids, lol. Anyway, I am so blessed with these two kids. One is wide-open, and the new guy is so relaxed that I start to worry. Take care of yourself.

[marissar]

It sounds like you are doing well and all is fine. However I urge you to go to the er at the first signs of things getting worse. Don't just assume that you can wait 3 months and recheck if you start feeling sick again. Since you are on medication other factors can play in also like getting symptoms that you think are bad which can actually be your medication needing to be adjusted as you improve even more. It happened to me.

If things don't feel right stay on the phone or in the office until someone listens and checks you out.

I have a friend and her baby is 1 week older than yours if it had not been for her staying on the drs cases they would have missed her condition( she was on the edge of a stroke). But now shes fine.