I want another chance- despite PPCM!

[ricemoe]

Well hello there... my name is Lea, but everyone calls me "Rice". I have been following the boards for a while, as well as other earlier websites related to PPCM over the last couple of years. I was diagnosed with PPCM on September 14th 2001.

I finally decided to post because I hadn't seen any new message in the Post PPCM Babies board in days- thought it was some kind of sign that maybe I should actually post something. I chose this particular group because like many (maybe all) of you, the most severe and devastating part of being a PPCM survivor is being told "NO MORE BABIES".

I am symptom-less, mostly recovered, extremely grateful... BUT ... I am also desperate. I want another baby and can't stop myself from obsessing.. but at the same time I can't bring myself to do what I know I need to do before I get pregnant (docs, tests, weight, will... the list goes on). Part of me is hoping that I get pregnant "by accident" so I don't have to hear from all the negative docs- AND I DON'T WANT TO WAIT ANYMORE. I want my cake and I want to eat it too. I have no problem doing what it takes, but I can't bear all of the negativity.

I have recently gotten all new doctors- who will not give me birth control until I submit to a trillion tests, so I am currently "carefully unprotected". They will also not discuss another baby with me. Docs are so undereducated with regards to PPCM that most of the time I feel like I know more about it than they do.

So I have taken the approach that fate will take its course and I will be fine... the combined stress of worrying about getting pregnant, while worrying that I would actually get pregnant, was truly beginning to drive me and my husband crazy. So we decided to STOP worrying and let nature take its course. We are not trying to get pregnant, but we are also not 100% protected.

So this is where I am at- In denial and sitting on the fence so to speak…

For those of you who would like to know... my pregnancy was horrible, I gained 100 pounds and was induced at 34 weeks when I had a BP of 185/115. I delivered my son (very healthy, but small at 5 lbs 2 oz, 18.5") During my pregnancy I suffered multiple symptoms including elevated BP at 4 months prego. I was under the care of an OB team as well as perinatologists. I went to the hospital several times for SOB during the 4 weeks before delivering, but was given nebulizers (for asthma) as treatment. No one believed me- when I gained 11 pounds in two days my doctor asked me what I had been eating. In reality, I couldn't eat, I couldn't sleep... I couldn't do anything. I mean anything. I believe I was in heart failure for at least the 4 weeks before I delivered. I complained of extraordinary weight gain, swelling, fast heart beat that I could feel in my neck, extreme tiredness- all dismissed as normal pregnancy symptoms, exaggerated by being overweight. The docs would not diagnose or do anything until I spilled protein in my urine, suspecting possible pre-eclampsia.

By the week I delivered I could no longer walk or bath myself... terrible.

At any rate, I delivered via c-section after being on magnesium for 24 hours because my son's hand was coming out first. I was on lasix and magnesium after delivery and felt great again within days. I was sent home with only orders for iron supplements.

My diagnosis didn't come for about 12 weeks later and several trips to the ER- I was misdiagnosed SEVERAL times. Finally, the week of Sept 11th, I hadn't slept for days... would not take lunch from work because I was afraid that I wouldn't be able to make it to my car. I walked into the emergency room thinking- this is it. Either they have to figure out what is wrong with me or I am going to die.

I was admitted to the women's health ward of a major NJ hospital- I mention this only because it stresses the importance of education regarding PPCM and women's heart issues- The nurses on my floor were absolutely ignorant- they kept telling me that I was depressed because of Sept 11th and because I just had a baby- they kept trying to give me valium. Meanwhile I was restless, having jaw, shoulder, chest and arm pain- I refused the valium and insisted that my body was trying to tell me something. I was throwing up bile and my head felt like it was going to split. I called my internist from the hospital, crying- I remember telling him that I hurt so bad I wanted to die. He reamed out the nurses and ordered a heart enzyme test. Upon getting the results I was given morphine and shipped off to the heart floor where I spent about 2 weeks in a private room.

Long story short, my ef was 18% and my LV was enlarged- leaking valves, etc. I was put on lasix, BP medicine, altace and a beta blocker. Docs told my family that I would be lucky to live a year and OBS wouldn't go near me... can't figure that one out.

For many months I was depressed, moody... you all know. After nine months I took myself off of everything... without consulting my docs and started taking heart healthy supplements that I had researched. I have had Echos, but I have not seen a cardiologist in about 3 years and my last echo was 1 1/2 years ago. My EF was up to about 40%, I think... and my heart is still mildly dilated (as far as I know). There was a HUGE improvement over the first year...

I feel terrible, admitting it... but I was (and still am) in somewhat serious denial... I have it but I don't, ya know?

I am a professional and work many hours... I went back to work when my son was 7 weeks old and the only time I have missed was when I was in the hospital and initially diagnosed. Keep on keepin' on is my motto.

So what is my point? I don't know. I need to go to the docs. I want another baby. I want to finally tell my story to women who get it. I want PPCM to stop getting in the way of my life.

I am afraid to go to the doctors, but know it is the first step to having another baby, if at all.

I just can't handle all of the negative responses from the doctors regarding another baby...they do not even want to discuss this with me.

So thanks for giving me the chance to introduce myself and the space to rant. In all honesty, after reading my post- I realize I have no idea how healthy I am, with regards to my heart.

You’re all moms, so maybe I need some motherly advice.

Regards,
Rice

[ricemoe]

See... this is what happens when you read message boards for 4 years without posting!

Those of you involved with this site are doing a great job.

My specialty, by profession, is marketing & pr. I know a lot about databases, web/graphic design and have recently taught myself PHP and HTML if you need any help.

Please email or MSG me if you do.

Regards,
Lea

[mom2gageandkeely]

Hello and Welcome! I'm glad you finally posted!

I understand about wanting another child. I did have one so I know I am one of the lucky ones that wants to have her cake and eat it to! However it is always risky, especially if you have not recovered and do not take the steps that will help you out. Sounds to me like maybe you don't want to talk to the doctors because you don't want to hear what they have to say. I have been there too, I am terribly afraid of what they have to say but you have to believe it's better to know than not to know so you can help yourself. As for the medicines and taking yourself off while not recovered, It sounds dangerous and I'm worried for you. How about you find a doctor with a referal and tell him you want to know both sides of the risks and what not and know before you start what your risk will be? Maybe someone here can help you find a doctor near by that they reccomend? Wouldn't be wonderful to hear you recovered! Take care!

[miachic]

Rice - Glad you finally joined in and posted your story. Welcome to our humble abode here on the internet. Feel free to rant, cry, scream, kick, laugh, whatever you want. We have all been there with all the emotions.

I'm sorry to hear that your story was so rough and your situation isn't the most ideal. It sounds like you are a very busy mom. I, like you, am tired of PPCM getting in my way and tired of always having it in the back of my mind. I was never one that was sick or liked going to the doctor so now I feel like it's a hindrance in my life. I choose to not allow it to be the majority of the time and live and learn from it hoping that I can touch other peoples' lives through my experience.

I too want another baby and like you, don't want to hear the negatives. However, I know too much medically to not consider the seriousness of the condition. I know what was going on with me and I knew that I was literally laying there drowning in my own lungs. I also know that I have been extremely blessed to be considered in the "recovery" category. I said to myself that if I were to recover in the six months time window and if I were to remain off meds (which I've done so since two weeks pp per doctor's orders at the time), and if at my next echo and over the next year or so I remain stable and my EF continues to go up (last check was 54%) that I would consider another pregnancy in the future. However, that isn't to say that I will do it blindly or just chance it. I am going to have every single test in the book to ensure the proper care for myself and the baby. I don't think it's fair to my husband or my child to NOT do it that way. After all, if something were to happen to me, they would be the ones suffering NOT me (well, I would suffer if I had the same things happen as before but if I were to die, I wouldn't be suffering anymore). My selfish desire to have more children is the driving force to me having all the tests done. I really honestly want more children but at the same time I love my boys dearly and wouldn't want to risk my life just to meet that selfish desire.

That being said, I really do think you should get tested so you can at least know where you stand today. Dr. Fett (our resident doctor) and many other people have said that if you aren't recovered, the risk of recurrence is huge and the risk of death is even more so. Although there have been women on here that have had subsequent pregnancies with not having recovered (unbeknownst to them) and have survived, there have also been a few that haven't. To me, that is enough of a drive to do anything and everything I can medically to ensure my continued survival for life in general as well as maintaining optimal health for hopeful future pregnancies.

I will be totally honest with you and say that your post sounded a little selfish in that you don't want to get tested, etc. To me, my husband and child are worth all the testing and I really think that since it's all available and out there that anyone that has the chance or opportunity should do anything and everything that they possibly can. Yes, it hurts to hear them say "no more" but wouldn't it hurt even more for you to stand outside your body and watch your husband and child(ren) have to live without you or watch you struggle to hold onto life because you didn't take the proper precautions? I know that's morbid, harsh and sounds really horrible but it's the truth. This disease isn't something that has definite answers like some other conditions that they know how to treat and that TONS of research has been done on.

So why not at least go to a doctor to see where you stand healthwise? I'm not trying to put you down or be mean or whatever it might sound like. I'm just really concerned about your safety and the safety of a future baby if you were to get pregnant with you not knowing the state of your health, especially since the last echo you had you weren't fully recovered. Please, please, please talk with a doctor. Talk with different doctors and peoiple and get referrals. There has to be someone out there that you will click with and really like. You deserve it and so does your family. Please be careful!

[miracle baby]

Lea I know you want another baby but I agree that you so take the precaution just find a good doctor that will listen to you. Also its better to wait till you're fully recover maybe you'll have to go back on med. for a little while but would'nt that be worth it if got you were you need to be in order to have another baby. Please dont rush into anything not knowing.
Just make sure you take care of your self first.I wish you the best.:)

[Lisa V]

I am sitting here and deciding if I should really reply to your post and I am going, you may not like what I have to say but you came here for help and advice and I am going to give it.

I also agree that you are sounding very selfish and not thinking of your boy or your husband. For you to go off medication and not see a cardiologist or even a PCG and have heart problems is totally not acceptable in my eyes. If you truly wanted to have another baby you would be doing everything possible to make that happen and you have not done any of that in over 3 years. You dont really know what your EF is and you have no idea if your LV enlargement went back to normal or even if your blood work is normal.. Someone with PPCM or other related heart condition should definitely be seen by a doctor. How do you expect to have a healthy pregnancy if your not even sure your a healthy to begin with it.

Have you considered talking to a doctor about how you are feeling and about your denial with PPCM. I believe this would be your best course of action before you decide to have another baby. You could be putting your health and the health of your unborn child at risk.

I am sorry if I am sounding harsh but you asked and I had to respond.
I am going to stop now becuase I could go on and go on.............If you want to know where I am coming from about my views maybe you should read my BIO.....................

[SusanD]

Welcome to our website and just wanted to say I can relate to soooo much of what you are saying. I am usually the poster child for self-responsibility and yet I canceled my cardo appointment this year and haven't seen my ob-gyn for over two years now.


It sounds trite to say this, but the old "stages of grief" theory of recovery is very much alive and true with us. Even though we don't officially recognize progression through the stages, it is a task we must do or ultimately fail to make a full mental and physical recovery. You sound very much like you are stuck in the anger and/or denial phase of recovery.

This anger and denial and refusal to acknowledge your disease is putting you at serious danger and potential harm ...if you become pg with an EF of 40% you are most decidedly tipping the scales towards leaving your child without a mother.

With that said, you sound at least like you are at the stage where you are willing to admit that this is not the best path. This is a GOOD thing and you will find you will have a LOT of support here. We all understand that it SUCKS to have pay attention to medications, cardiology appointmnents, shortness of breathBut acknowledging an official and concrete step toward redirecting your pattern will require that YOU play a role in this whole thing....and this is often hard to do when you are stuck in a pattern where everyone else is to blame for missing the diagnosis.

You seem to be well educated and eloquent and are perhaps *just* the voice we are looking for as we educate professionals and peers about this disease. But you have to be willing to give up the anger and denial that is keeping you entrenched in the disease and therefore is keeping you from reaping the benefits and *wonderful* joys of the recovery process.

We are SO glad you have stepped out and are joining us. I think all of us , on some level, have felt the way you do. I have played with my meds more than once and as a nurse I should no better......sigh.

[mikki]

Rice,
I'm glad to see you posting after all those years of hanging around...
I hardly have time to keep up with this board lately, but when i first found it, I posted all the time (do you know me?)

anyway- our pregnancies sound so similiar, it's scary! (the weight gain, the swelling...) I went 41 weeks and finally was induced but they let me go way too long. I was dx after 4 days though... I can't even imagine what you went through... and the nurses and docs at that hospital- wow, they needed a clue, didn't they?
I had to convince the NP, to put of stethescope up to my chest... had to talk her into it! The regular OB wouldn't even see me with my complaints... so I know how it is to fear them...

I only recently went to a yearly exam (after 4 years of no yearlys) and was really surprised at my visit... not only did the OB (new OB -mind you) know what it was that I had, she knew which medications that I should be taking, she talked to me about what I went through, I started to cry... she talked to me about PPCM... she really KNEW! I was in shock!

Has it taken 4 years for the word to spread? Is the word spreading? My visit was the little bit of proof that I needed to have faith again. Does this make sense? And maybe it's getting a little bit better for all of us, and for new girls who show the signs we had.

Of course my cardio doc is great too(i've been having regular visits with him)... I completely like him... he's genuine and he tells me 'like it is'.

I think you should find someone you can trust... find someone with the right creditials but someone you can have faith in. Then find a OB/cardio team, if you decide to go ahead.. and you need them all to work together.

I have been battling depression now for the past 4 years, and part of it, is that I won't be able to give my son a brother, won't be able to give him a sister... it's just him and that part makes my sad beyond belief.... but then I look at him and think... well, but what if he didn't have me? and i'm not sure but that may impact his life more... so I move forward... try to get through the sad days and live for the happy days. IT SUCKS, I can't say it doesn't...

ok... i dont' think i am helping at all... but just wanted to know that I'm glad you are here... i'm glad that someone feels the same way I do... and I hope you find your strength to move forward the way you see fit. I wish you all the best and if you ever need to talk or rant - you can email me :)

[tabs]

Rice, I am so glad that you posted! I have been debating about posting similar thoughts. I am over 5 yrs out and have 3 beautiful children. I went into my third pg knowing that it would be the last (I had talked hubby into it!). Within months of delivery and my lowest EF (7%), I had a tubal. It was for the best yet now I hear my biological clock ticking and I am only 32.

Within the last year, my husband has talked about more children. A big change for him and a work of God. We have looked at fostering and are still sitting on the fence about it. To that end, we are going to be doing respite care for a 2-3 month old with a couple of weeks for one week. I am hoping that this will "cure" me of the longing.

Yet.......I still wish that the tubal will fail and God will give us another child.
The worst thing is that my EF is not normal, yet even that doesn't scare me as I had an EF of 43% for my entire third pg.

I will give you the same advice that I am trying to follow: spend time with God in prayer. He knows how we feel and he will answer! I know that he will honour my request and if a child by some means is not in our future, he will give me the strength to deal with it.

I hope that helps,
Twilah

[naturalmama1012]

Hi there and I am glad you posted!

I can understand your fear, frustration and denial. I've been through the same thing with my health, in different ways. PPCM is not my only problem; and I have suffered greatly at the hands of incompetent medical care. For instance, I have ulcerative colitis, and it took 4 different doctors and almost 6 months to get a diagnosis while I was in the middle of a flare-up so severe that I became horribly anemic and was almost hospitalized. You know what though, when I finally found a good doctor who paid attention to me, I was diagnosed within a week and on the appropriate treatments immediately and have been in remission ever since. So I have seen both sides of the coin.

I really have found that educating yourself, and being aggressive in demanding the appropriate treatment and in demanding a good doctor, is really the only way to deal with these issues head-on. I had to see three different cardiologists before I found one that was knowledgeable about PPCM, open-minded, and willing to do whatever tests were necessary to give me a clearer picture of what my risks were for a future pregnancy.

At the same time that you need the doctors to listen to you, that does have to be moderated though with listening to them. Doing things like stopping meds without consulting can be extremely dangerous... for example if you are on a beta blocker at a high enough dose and stop suddenly, you can have a fatal heart attack. Just something to keep in mind. As much as I have researched, questioned, and debated PPCM with my doctor, I have always tried to temper that with the knowledge that she is my ally too... she is the expert, after all, in knowing my treatments and tests. At some point I have to give some of that trust over to her.... but that was only possible once I found a doctor who was willing to answer all my questions, and was well-educated about my problems.

I have had a successful second pregnancy, but many factors contributed to that and even with my close medical supervision I temporarily lost some heart function. I have no regrets; however I also hate to think about what might have happened if I had gone into this pg without my doctor's help, and without the close monitoring and the meds I was on while pregnant.

I can tell you that so far at least the research seems to support the fact that if you have a post-PPCM pg without recovered heart function and EF above 50%, you have a severely increased risk of death or serious complications. I really believe you owe it to yourself, your husband, and the child you already have to find out where your heart function is, so you can at least make an educated decision.

Ignoring the problem will not make it go away or be OK; I know you know this, but I also recognize that denial can be deadly. If the news ends up being bad news, at least you can begin to get the appropriate treatment to keep you healthy NOW, and begin to come to terms with the idea of not having another baby, which I know you do not want to face... I really understand, because I have been there too, terrified to face the potential news that I would never have another child.

I wish you luck and feel free to PM me anytime, I will try to answer any questions I can.

[SusanD]

*Excellent* response Naturalmama.

[melissamph]

Becki that was the best post ever! Thanks for caring enough to share with all of us!

[jmonte]

Rice- Welcome to the site. I hope you feel empowered and not afraid by the info you get here. I just wanted to stress what everyone else is telling you again- you need the information. Knowledge is power and you need to take control of your health. Most of us here have learned from one experience or another, we're our best advocates in our own healthcare- no one else. Aren't you the least bit curious to see if you're healing?? You might be doing better than you think! Depending on where you live, we are all excellent resources on doctors and specialists in the areas we live in. Let us know if you need help finding the right doctor for you. Good luck. Julie