Viral carditis = PPCM?

[miachic]

Hi Dr. Fett. I am talking with a friend who is doing surrogacy for a mom who had PPCM a few years ago. I gave her all the info I found on here about potential of PPCM in the surrogate but she is saying PPCM is a virus, etc. etc. etc. I told her they haven't really found the actual "cause" for PPCM.

What information can I give her regarding this as an answer to this statement? She's saying she knows this and that but she's quoting old information saying that her IM told her that the risk of dying with another pregnancy is 5 to 56% which tells me that her IM is not up on the current research and terminology. I'm giving her stats from things you've told us and gave her your algorithm but I need to know how to answer her virus statement.

Any thoughts or research links you can give me? Thanks!

[SusanD]

People like that irritate the snot out of me. How interesting that SHE knows for sure the origin of PPCM when say.......Dr.Fett is still trying to pin it down. :rolleyes: Leave her be, hope for the best. You aren't going to change her mind AND she probably won't get PPCM and then will emerge from the surrogate pregnancy and say to YOU " I told you so." :rolleyes: :rolleyes:

[miachic]

Susan - hehe.

I gave her all the info I could find about surrogacy from a PPCM mom. She said she isn't using the mom's eggs because they failed after 3 transfers so they're using donor. I'm just trying to explain to her about PPCM because it sounds like her information is outdated.

This is what she said:

It says that its a viral infection spread by 'something'. MY IM doesnt know how she got it, but she had a cold at one time and thinks that may be what did it. What I meant by 'spread' is, if I already did 3 transfers and 2 were with her eggs, I didnt get pg which means that her DNA and genes, etc.. never entered my blood stream. The baby never implanted (since PPCM is only in pregnant women).
How can your OBs let you get pg again? You can go into cardiac arrest and die from it. I do know alot about it already from my IM. She's had it since her last pregnancy over 4 yrs ago and is now on heart meds for life because of it, because of the enlarged heart. She also just had to have an ecocardiogram because of an irregular heart beat (she's fine btw). BUt in order to get her PPCM at bay, she has to remain on meds and cannot get pregnant anymore. She was gonna take a chance and do it, but thinking about possibly dying and having the baby die as well, or leaving the child behind because she wanted to carry her own child isn't an option for them.
Her OB also told her firmly "NO!". So, this is her last chance. We only have 2 embryos left and if they dont survive the thaw or don't implant if they do survive the thaw, thats it, they are done. You said that's what you 'had' but PPCM does not go away.
If you look at this link: http://en.wikipedia.org/wiki/Peripartum_cardiomyopathy

It says on there at the very bottom for 'Prognosis'
However, all women should be strongly discouraged from having subsequent pregnancies.

And this link:
http://www.webmd.com/content/article/4/1680_51820.htm

It states that the conditon is WORSE in subsequent pregnancies:


Quote:
After delivery, aggressive management is used to stabilize you and prevent your condition from worsening. This condition tends to recur in subsequent pregnancies, and is often worse, occurring earlier in the next pregnancy than in the first. For this reason, another pregnancy is not recommended, especially if enlargement of the heart has persisted beyond six to twelve months after delivery.

This is taken from something you posted above:

Quote:
There are no reports in the medical literature of the development of PPCM in a surrogate mother. An Internet PPCM support group (http://www.ppcmsupport.org/ and http://www.amothersheart.net/) carries an entry from a 27 year old gravida 3, para 4 surrogate mother who was diagnosed with PPCM 2 weeks following the delivery of twins. The biological mother did not have a history of PPCM.

I really would talk to someone other than your OB about getting pregnant again. Its a scary scary thing! I am assuming that you have heart doctors? If not, you may want to speak to a few. Its not something to mess with, and I would def not be getting pg again if I knew I could die. The mortality rate is between 5 and 56%. Thats way too high to risk anything. Thats 5 people out of 100 or more.

[miachic]

This was my response:

Actually alot of the information you're giving is outdated. My OB and cardio left it up to me. If you have recovered with full heart function with an EF of 50% or more then you only have a 10-20% chance of recurrence based on recent research. If you recur, you have a 50% chance of not getting to full recovery which would require being on meds the rest of your life. If you do recur and it's severe, you have a 1-2% chance of dying.

I choose to look at it as I have an 80-90% chance of not recurring. I know my risks, trust me, I have done more research about this subject than anything I've ever looked at in my life. Most of the data she is giving you is old. In fact, the rates of 5-56% is such a huge range that it's most likely incorrect. I chat on a PPCM forum and there has been extensive research done and I'm in a research study group through St. John's in New York for PPCM. They are creating a database of people who have gone through PPCM and such to keep tabs on things and do more research to get things updated.

I have seen a heart failure doctor as well as a regular cardio who I follow with yearly. I go back next Tuesday for my next echo but the one I had in January I was completely normal with no problems. I actually recovered function by 4.5 months postpartum and the research says that if you recover heart function within 6 months of having a baby you have a great prognosis for life expectancy. My cardio said that they would monitor me closely and he's confident about another pregnancy. My HF doctor said that she was cautiously optimistic. Yes, they advice not to have another pregnancy but there is alot of research that is so old that it doesn't give a good basis for decision making in today's medical world. Even in the last four years (since the time she had her first baby) medicine and technology and research has come so far and made so many new developments and discoveries in this "disease" it's shocking.

Someone put it to me like this...having another pregnancy is a chance I take. I have a 10-20% chance of recurring. How big of a chance do I have walking across the street and not knowing if I were going to get hit by a car? There are chances we take in everyday life just living. I refuse to live in fear and allow this to rule my life. I'm not saying that I'm just going to throw everything to the wind and go into this blindly. No, that is why I'm informed and am making an informed decision. I have all my ducks in a row and know what I'll be facing when I go through another pregnancy. I know many women who have done it and been fine and a few that have recurred. HOWEVER, if you look at the research, the chance of dying if you've had recovered heart function is only 2%. That means I have a 98% chance of living and enjoying my life. That is a huge percentage! Will I take that 2%? Absolutely. There are complications in any pregnancy that you go through. In fact, anyone of us that gets pregnant could have more severe complications than I did without even knowing what you're facing. The good thing is that I know what I'm facing, my doctors know how to monitor and treat me and I'll be watched under a microscope through my pregnancy. Am I scared I could have complications again? Sure, in my human flesh it's a valid fear. Do I know who's in control? Absolutely...if I didn't have faith in God I don't think I could personally walk this road. I could even go through another pregnancy with no sign of any complications whatsoever. You just can't know for sure.

My choice? I choose to trust God that He knows what He's doing and He will carry me. I'm about 95% sure we'll do this again because in my heart this is something that I feel I need to do. I am by no means entering this blindly. This subject is very close to my heart (no pun intended) and I am very passionate about it. I have extensive research so if you or your IM want it, I can pass it along. I also have a doctor that I talk with who has researched many many, hundreds, of patients and I ask questions to him all the time. I would not enter another pregnancy if I thought I was going to die. I have confidence in the doctors God has placed in my life and know they know what to do. I will most likely be induced and will be put on meds through my pregnancy to support my heart.

Check this out:

Insert Dr. Fett's algorithm picture, hehe.


I would encourage yourself and your IM to seek some updated research and information to get better stats of things that are happening in the PPCM world today.

I didn't tell you these things to stop you from doing a transfer. I told you these things to warn you. You sound like you're offended in your posts and I didn't mean it that way. I just wanted to let you know there was a risk if using a PPCM mother's eggs. Please don't be offended.

I am very passionate about being your own health advocate and with you not knowing that information about a possible causal relationship of PPCM in a surrogate pregnancy made me think that possibly you aren't completely informed. Trust me, I am more informed than is probably good for my own darn brain. The doctors roll their eyes when they see me coming because I lay it all out and ask them questions that they've probably never heard patients ask. I actually stumped the HF doctor many times with my questions.

I'm informed and want you to be informed so that you know what could potentially happen. I know my risks, I've walked it, I know what to expect and I know what I'd be facing if it were to happen again. I don't want you to enter it blindly and then go through that if it were to happen.

The glass is half full.

And in response to her comment about my "I had PPCM" comment...

BTW, I said it's what I had because I did have it at the end of my pregnancy. I will never be the same, my heart will never be the same, but I have recovered full function of my heart and am considered "normal" by echocardiographic standards per the cardiologist. Just wanted to explain that a little bit further.

ETA: I know I don't have all the information or answers but I know I know more than the "common" person...heck, all of us do. We've all walked it and can probably spout off more information than our doctors want us to know. I really really like this mama and don't want her to take a chance or risk without knowing potential problems. I'm not saying it's going to happen...heck, we don't even know if it will happen to us as actual PPCM survivors. I just want her to have all the information she can to make an informed decision. So, Dr. Fett, any help I can get I would appreciate. Thank you so much!

[tabs]

I believe that Dr. Fett was the author (or co-author) of a medical journal article about a surogate who developed PPCM during the surogate pregnancy that used the eggs from a mother who had PPCM. So in that respect she is completely wrong. I also believe that the surogate mother did frequent one of the (our) sites.

Other then giving her a list of current research articles, I don't think that she sounds like she is willing to listen.

Twilah

P.S. As to the virus origin.....any of the on-line medical sites, Emed, etc. will say that they do not know what causes PPCM and will list the research behind possible causes.

[SerenaWelsh]

And just to back up what Twilah said....Wikipedia is not a medical journal and many of it's contributors are not exactly experts in the subject.

A little bit of the wrong information can do alot of harm, but I agree with Susan. Especially since they're using a donor egg...

With any luck, this is a lady who will never have to become as educated on the subject as the rest of us are.

[heartfulloflove]

Yeah, I'm going to have to agree with what Susan said here too. You can have all the information in the world and it means nothing to someone who just isn't willing to listen. Rest easy in knowing that you informed her as best you could, and then some. Any risk she takes on from this juncture is her risk, her choice. Just hope for the best for her.

[JAMESFETT]

Well, we are making progress, and I think we are getting close to an answer; right now it still looks like a virus starts the process, which then changes to an abnormal immune response that makes the process worse. In previous articles about risks of develoment of PPCM, we suggest some potential mechanisms:

Ansari AA, Fett JD, Carraway RD, Mayne AE, Onlamoon M, Sundstrom JB. Autoimmune mechanisms as the basis for human peripartum cardiomyopathy. Clin Rev Allergy Immunol 2002(Dec); 23:289-312.

Warraich RS, Fett JD, Damasceno A, Carraway RD, Sundrom JB,Arif J, Essop R, Ansari AA,Yacoub MH, Silwa K. Impact of Pregnancy related heart failure on humoral immunity: clinical relevance of G3-subclass immunoglobulinss in peripartum Cardiomyopathy. Am Heart J 2005;150:263-9.

Fett JD. Peripartum cardiomyopathy in both surrogate and biological mother. Hum Reprod 2005;20:2666-68.

Fett JD, Christie LG, Carraway RD, Sundstrom JB, Ansari AA, Murphy JG. Unrecognized peripartum cardiomyopathy in Haitian women. Int J Gynaecol Obstet 2005;90:161-6.


JDF

[miachic]

Thanks Dr. Fett! I'll pass this along. :rolleyes:

[miachic]

This is a response I just got from her:

Hey
thanks for your info. Perhaps you are in a different situation, but my IM is advised as well as all the other PPCM ladies that I know (being a surro you get to know all about these issues lol) not to get pregnant again. And no, if I knew that I had a 10-20% chance of getting hit by a car when I crossed a particular street, I would not enter into that street. PPCM worsens w/ each pregnancy and because its such a serious problem, thats why avoidences are said to be taken seriously. I've been matched w/ this couple for over a year and this mom has had this condition for almost 5 years, so she does her research. She was told when she was I think 6 mos along that she had this condition, and her son will be 5 in Feb. So, its something that she's been dealing with for along time and I am sure she's researched it as soon as she found out since it wasn't widely known. Sadly its becoming more and more, and if you look, alot of the times PPCM occurs in ladies that have gained alot of weight in a short period of time (hence the reason it comes in pregnancy) as well as other things. I found an excellent site on it, and I have to run out to get dd from school, but I will find it for you.
Alot of the ladies undergoing IVF today are having this issue, and its sad they have to now shell out $40K+ to have a baby because they cannot do this on their own anymore. It breaks my IMs heart daily because of the fact that she's fertile, but can kill herself in the process. She has a son to live for, so thats what she needs to do. I hope it works this time because their money well has almost run dry! lol

And my response...:D

Like I said in my post, the doctors have to tell you the risks and not to get pregnant because IF something happened they could be sued or held liable. There isn't enough information out there, to tell you for sure that you will recur or that it will be worse. There just isn't. Period. To say that PPCM worsens in a subsequent pregnancy is an incorrect statement. It has not been shown to. It hasn't even been shown that it will recur and in those that it does recur, it isn't always worse. It could be worse but that's not 100% guaranteed and neither is the fact that you are for sure to have it happen again.

And if she was told when she was 6 months pregnant that she had PPCM then she has the incorrect diagnosis. Perhaps she has dilated cardimyopathy.The clinical diagnostic criteria for peripartum cardiomyopathy is onset at 36 weeks pregnant or 5 months postpartum. If she was in fact told at 6 months pregnant that she had PPCM she was most likely diagnosed incorrectly. This is not from my lips either. This is from extensive clinical studies that have been done on PPCM. Those that do not meet diagnostic crtieria aren't given the definitive diagnosis of PPCM (from what I've read). If they don't have onset in the last four weeks of pregnancy or the first five months postpartum and if their echocardiographic findings aren't consistent with PPCM diagnostic parameters they most likely will not be given the "official" diagnosis of peripartum or postpartum cardiomyopathy. If you'd like me to get more information on this I can.

I'm not trying to argue it just seems that either you've been misinformed or she has incorrect information about PPCM. Trust me, I know more on this subject than I should or want to. I didn't post that stuff to start an argument. I posted it out of concern. If you don't want to listen to anything you don't have to. You would most likely be fine in a surro pregnancy but I didn't want you to not know all of that. I'll quit talking now. You don't have to send me the link because I've found every single link online that was ever posted about PPCM.

[miachic]

Okay, critique me ladies and Dr. Fett. Am I doing okay? Do I have everything correct? Just want to make sure. :)

[JAMESFETT]

Indeed you are OK, a good advocate and a good source of information. I think we are finding that if recovery of left ventricular systolic function (EF over 50 percent) comes within the first 6 months or within the first 3 years (maybe longer, I've observed recovery coming in the 3rd year post diagnosis), the prognosis for a normal life expectancy is the same, which is excellent. The thing I keep in mind is that there is always something new to learn, and I keep my ears open to what you ladies who have had PPCM say, because I have learned a lot, and I expect to learn a lot more.

JDF

[sfekke]

Does anyone know of one case where someone who normalized heart function went off the meds, waited 2yrs and then got pregnant again and died from PPCM, a blood clot, or sudden cardiac death. Or how about someone with the same criteria who survived a recurrance but suffered chronic heart failure?

I know there must be some out there maybe just not on this website. I guess I am getting really frustrated with these mortality stats. You can google PPCM and subsequent pregnancy and in 5 min get a better feel for the risk with normal heart function -10%. PPCM is serious and the subsequent pregnancy should not be taken lightly, but PPCM does not need to be exaggerated in the risk of recurrance for women who have normalized.

I've got a friend who had HELLP syndrome, flatlined 3 times after a C-section at 35 wks, but was not so greatly discouraged against a subs preg as so many women on this site.

[heartfulloflove]

HELLP isn't heart failure, or heart muscle weakness. The case you describe is severe. Typically women who get it are not advised against further pregnancies unless they have some other underlying factor that contributed.

As for your recurrence question, the statistics even for those who do get a recurrence are very promising. Death rate (according to the info here) is 1-2% for those who (a) have a recurrence and (b) do NOT recover. Recurrences are typically manageable. Certainly what you describe can happen - but anything can happen. It sounds like you're doing what I used to do, always looking into the worst case scenario. Don't scare yourself too much, try to keep focused on your own progress - which is awesome ;)

[tabs]

HELLP isn't heart failure, or heart muscle weakness. The case you describe is severe. Typically women who get it are not advised against further pregnancies unless they have some other underlying factor that contributed.

As for your recurrence question, the statistics even for those who do get a recurrence are very promising. Death rate (according to the info here) is 1-2% for those who (a) have a recurrence and (b) do NOT recover. Recurrences are typically manageable. Certainly what you describe can happen - but anything can happen. It sounds like you're doing what I used to do, always looking into the worst case scenario. Don't scare yourself too much, try to keep focused on your own progress - which is awesome ;)

Shannon,

I think that you may have mis-read Sarah's post. She is asking if anyone actually knows of anyone who died after meeting any of criteria listed. She is wondering why women with PPCM are still discouraged from having subsequent pregnancies even after full recovery when other women are not told not to have subsequent pregnancies even though they have suffered life-threatening complications that can re-occur.

I have often wondered the same thing!:)

Twilah

[miachic]

Twilah and Sarah - Great questions and things I hope we will find out in the years to come as Dr. Fett and St. John's and other people continue to do research. I think it's just one of those "you can't know for sure" type of things and so we're advised not to. The docs don't want to take the risk of giving us the okay but at the same time there are other things much worse than PPCM. My OB actually told me of a case where he is advising the person not to get pregnant because her complications would be much worse than mine ever were with PPCM. She has liver damage from something in childhood.

So there are those things that are much worse than PPCM but again, like PPCM it's a personal decision. I think it's one of those areas that doctors have to give their best opinion but it's a patient's decision to make.

Am I making sense? All things that hopefully the future of medicine and technology will be able to give us a better grasp of. :D

[SusanD]

This is a response I just got from her:

Hey
thanks for your info. Perhaps you are in a different situation, but my IM is advised as well as all the other PPCM ladies that I know (being a surro you get to know all about these issues lol) not to get pregnant again. And no, if I knew that I had a 10-20% chance of getting hit by a car when I crossed a particular street, I would not enter into that street. PPCM worsens w/ each pregnancy and because its such a serious problem, thats why avoidences are said to be taken seriously. I've been matched w/ this couple for over a year and this mom has had this condition for almost 5 years, so she does her research. She was told when she was I think 6 mos along that she had this condition, and her son will be 5 in Feb. So, its something that she's been dealing with for along time and I am sure she's researched it as soon as she found out since it wasn't widely known. Sadly its becoming more and more, and if you look, alot of the times PPCM occurs in ladies that have gained alot of weight in a short period of time (hence the reason it comes in pregnancy) as well as other things. I found an excellent site on it, and I have to run out to get dd from school, but I will find it for you.
Alot of the ladies undergoing IVF today are having this issue, and its sad they have to now shell out $40K+ to have a baby because they cannot do this on their own anymore. It breaks my IMs heart daily because of the fact that she's fertile, but can kill herself in the process. She has a son to live for, so thats what she needs to do. I hope it works this time because their money well has almost run dry! lol

And my response...:D

Like I said in my post, the doctors have to tell you the risks and not to get pregnant because IF something happened they could be sued or held liable. There isn't enough information out there, to tell you for sure that you will recur or that it will be worse. There just isn't. Period. To say that PPCM worsens in a subsequent pregnancy is an incorrect statement. It has not been shown to. It hasn't even been shown that it will recur and in those that it does recur, it isn't always worse. It could be worse but that's not 100% guaranteed and neither is the fact that you are for sure to have it happen again.

And if she was told when she was 6 months pregnant that she had PPCM then she has the incorrect diagnosis. Perhaps she has dilated cardimyopathy.The clinical diagnostic criteria for peripartum cardiomyopathy is onset at 36 weeks pregnant or 5 months postpartum. If she was in fact told at 6 months pregnant that she had PPCM she was most likely diagnosed incorrectly. This is not from my lips either. This is from extensive clinical studies that have been done on PPCM. Those that do not meet diagnostic crtieria aren't given the definitive diagnosis of PPCM (from what I've read). If they don't have onset in the last four weeks of pregnancy or the first five months postpartum and if their echocardiographic findings aren't consistent with PPCM diagnostic parameters they most likely will not be given the "official" diagnosis of peripartum or postpartum cardiomyopathy. If you'd like me to get more information on this I can.

I'm not trying to argue it just seems that either you've been misinformed or she has incorrect information about PPCM. Trust me, I know more on this subject than I should or want to. I didn't post that stuff to start an argument. I posted it out of concern. If you don't want to listen to anything you don't have to. You would most likely be fine in a surro pregnancy but I didn't want you to not know all of that. I'll quit talking now. You don't have to send me the link because I've found every single link online that was ever posted about PPCM.


Oh WHATEVER.........I love the part of the weight gain. I was a three mile a day swimming FOOL and at 5"10 weighed 140 lbs. I gained "maybe" 20 lbs up until the last month of my pregnancy.

She is sooooo not going to listen to you.

[SerenaWelsh]

Sometimes it's best just not to confuse people who've already made up their minds with facts.

I applaud your attempt to spread the correct information, but just because you get it out there doesn't mean people will listen.

And that's the frustrating thing about advocacy of any type. :rolleyes:

[miachic]

:D Yep I'm done. No more footwork on my part because I did everything I could.

[Erin]

Really interesting dialogue, thanks for sharing. Great job.