A "Mild" Case?

[SarahG]

Hello Dr. Fett,
I was diagnosed with PPCM on June 19th of this year. I woke up one morning, 5 days before my due date, with heart palpitations that were making me cough, and extremely swollen feet and ankles (those were the only symptoms I've ever had). I went to the hospital's labor and delivery ward and was eventually referred to a cardiologist who did a 24 hour holter monitor. The monitor showed several strings of V-Tach (one was 12 beats long), and he ordered an Echo. The echo showed my EF at 45% so he and the high risk OB decided to take the baby (this was now 6 days after my due date). After I was admitted to the hospital, I was started on a Beta Blocker and monitored very closely through the labor and delivery and my heart never did anything abnormal. After our son was born, the cardiologists told me to start on Ace Inhibitors, but was told I wouldn't be able to breastfeed. I was devastated, and because I was told I had a "mild" case and had absolutely NO symptoms once the baby was born, I declined the Ace Inhibitors and stayed on the Beta Blockers so I could nurse. We agreed that if any symptoms started up, I'd stop nursing and start the Ace. The baby was born on June 22nd, and just this weekend, July 14th, I started to feel my heart palpitate again, but not to the point of making me cough, and I have no other symptoms, not even swollen feet. My heart has been palpitating pretty regularly ever since, and I have a call into my cardiologist saying I'd be willing to start on the Ace now and stop nursing, but I was curious as to your opinion on this. I just read what you said about gradually increasing doses and my cardiologist never mentioned this before. Do you think that just increasing my metroprolol might stop the heart palpitations, or do you think it's just smarter and safer to start on Ace Inhibitors right away? Also, my BP has always run very low, and now that I'm on the Beta Blockers it's often below 100/50. Will the Ace Inhibitors make it go even lower???

Thank you for your time, and THANK YOU for this Support Network!!! I too was told never to get pregnant again, but this forum has given me great hope!

-Sarah :O)

[reezlemom]

I'd definitely want my doctor to know that if I were you.

Just wanted to say as someone who also had a milder case, I still have palpitations on and off (sometimes nasty ones for days and days) at 19 months after delivering my baby, and I've otherwise recovered. I also declined the ACE, but for different reasons (mostly because I'm an idiot). I missed out on breastfeeding and I regretted it, but I'm looking at the positives now. I've learned too that palpitations aren't always bad news, and mine are just VERY sensitive to hormonal changes now, so hang in there. I hope all is well for you :)

[SerenaWelsh]

YOU DO NOT HAVE TO STOP BREASTFEEDING ON AN ACE!
Please do consult with your cardiologist and your lactation consultant. There are ACE Inhibitors that are safe. Enalapril is one of them, though there may be others.

Just wanted you to know that one does not preclude the other.


Best wishes,

[Deb]

Just to reiterate Serena, I took lisinopril, an ACE, and toprol XL while breastfeeding....

[JAMESFETT]

I hope that I can give you some info that will be helpful, and in the process I have a couple questions:

-What is your height and non-pregnant weight? (I need this to determine your body surface area from a nomogram and use that to know the relative size of your left ventricle (LV).
-What is the echo dimension of the end-diastolic (EDD) and the end-systolic (ESD) measurement of the LV? (I need this to calculate the Fractional Shortening (FS) and compare that with the EF, since they are both measures of LV systolic function. While your EF is 45, not so very decreased, and by comparison your FS should be around 25 to 28 %, but sometimes the two do not agree exactly. It's just additional info that I fiind sometimes very helpful.

Your palpitations and documented run of V tach place you in a more serious category than "mild" case of PPCM, although your preserved EF at 45 suggests only "mild." However, PPCM is an inflammatory cardiomyopathy that is quite spotty in locations in the heart muscle or myocardium. The fact that you have had the arrhythmia tells me that your right ventricle and/or interventricular septum is also involved (where the heart conduction central circuit is located) as well as the left ventricle, giving you rhythm manifestations as well as systolic dysfunction of the LV.

The V tach was very serious because it could transition into something worse; and I am glad for your astute cardiologist who placed you on a beta-blocker (BB) (metoprolol--is it the long-acting form?, which is the best).

You and your cardiologist will of course need to work it out, but in similar situations I do not hesitate to use an ACE-inhibitor (ACE-I) because in addition to the hemodynamic circulatory benefits, it, along with the B-B helps to counteract the inflammatory and overactive immune system process--cools down the proinflammatory cytokines--involved in PPCM, hence giving a real boost to full healing, which I expect and hope you to have as time moves along. For those who don't want to take ACE-I because of breast-feeding one can substitute a combination of hydralazine and nitrates (I usually use 25 mg hydralazine along with 10 mg of nitrates 3x/day, but others use different combinations. If one is not going to breast-feed anyway, better to go with the once or twice a day type of ACE-I. When ACE-I cannot be tolerated, because of cough or whatever, angiotensin II receptor blockers (ARB) are equally effective.

Concerning B.P. the best adage is always "start low, increase slow." And take the increase at bed-time when it will be less likely to cause postural symptoms of lower B.P. because you will be lying down anyway. One can almost always find the right dose of ACE-I and B-B with respect to not-too-low B.P.

I compliment you and your doctors for being right on top of this. Best wishes.

JD

[SarahG]

Thank you to everyone who replied - I will definitely talk to my doctor about Enalapril and Lisinopril and see if I can get started on one of them, or talk to him about the alternatives Dr. Fett mentioned.

Dr. Fett - I have an appointment for another Echo on Monday, so I will get the answers to your questions then. Non pregnant height and weight = 5'7", 190 pounds.

Also, is V-Tach common in PPCM? and when it says "unexplained cough" could that be caused by V-Tach?

Thank you again!!!

-Sarah :O)

[Elliesmom]

i am breastfeeding my 8 week old and was on hydralazine, but my cardio had me stop after one week of use. i am now only on coreg <digoxin lasix and potassium every other day>. take care and i hope your palps decrease.

[JAMESFETT]

Recognized ventricular tachycardia (brief episodes may occur unknowingly) is not so very common (but not rare) in PPCM, and of course one hopes to not have it at all. Usually palpitations represent isolated extra beats, such as ventricular premature contractions, and usually are of no import. With inflammatory cardiomyopathies, one is more concerned about the nature of palpitations, hence the benefit of Holter monitoring (and the value of beta-blockers in treatment). Sometimes an arrhythmia, such as V-tach or others, may be associated with a brief cough. But more often in heart failure a cough is related to excess fluid in the airway. It can also be a side-effect of an ACE-inhibitor, and if troublesome, one of the main reason to change to ARB (angiotensin II receptor blocker). Thanks for the numbers, and I will look forward to learning about the others.

JD

[mygirl22]

So, Dr. Fett, then can palps be caused by Lisinopril? That's all I take (20mg 1xday) and still have them often. My latest echo (with and without contrast), 24hr holter monitor, labs, etc only show tricuspid and mv regurgitation. Everthying else is normal and my docs seems unsure as to why I still get them. What do you think? He seems unconcerned about the regurg. Also, I figured I would take some of these ladies advice and start a real exercise regimen next week once I have better work hours at new job hoping that would deplete them and help me feel better overall. Please advise.
Thanks a bunch.

[JAMESFETT]

No, I would think the palpitations are not due to lisinopril. With everything else being checked out as OK and your EF normal it sounds like your cardiologist is right not to be too concerned, because palpitations can also be very innocuous and part of a normal picture.

JD

[SarahG]

Regarding the heart palpitations I was having, I had started on Zoloft on Thursday evening to help with the anxiety I was having (anyone else convinced they were going to drop dead at any minute? I was going crazy!). The heart palpitations started on Friday and gradually got worse, so after talking to my doctor I stopped the Zoloft on Sunday and every day they've lessened and today they're almost completely gone.

So here's my question - after my echo on Monday, if it shows significant improvement (my EF was never below 45% as it was), do you think I even need to worry about going on any form of Ace Inhibitor? As long as I'm getting better, can I assume the Beta Blockers are sufficient for my treatment and don't need to find one that's safe for breast feeding?

Also, regarding that study that was just posted, I am a member of Kaiser Permanente in Southern California. I can't tell you how glad I am to have been part of that medical group with this diagnosis. I can't imagine how bad it could have gotten had my PPCM not been caught before I went into labor!
By the way, do you know what doctors are conducting the study? I'm actually not very happy with my cardiologist (he doesn't want me to get pregnant again no matter what), but when I was in the hospital, another cardiologist was hopeful that I could get pregnant, assuming a full recovery and all of the other precautions that have been talked about here. I'm going to see about transferring to his care instead after my next appointment since it's already been scheduled.

Thanks again!
-Sarah :O)

[reezlemom]

I think it depends less on your situation (as long as you've recovered, of course) and more on the cardiologist's personal comfort level and knowledge on the topic of PPCM. Some cardiologists seem very optimistic about a positive outcome in a recovered woman, while others firmly stand by the notion that it is simply not worth the risk. I think ultimately, once a woman recovers, it's really up to her whether she wants to go for it. I would want a watchful cardiologist and a high-risk obstetrician on board before I took that leap, and if I only had one child I would definitely consider it.

[JAMESFETT]

If the EF is still at 45, I think ACE-I would be helpful and importnat. If the EF is over 50, I think the B-B for a full year after diagnosis would be sufficient. You will soon know where you are.

The authors of the Kaiser Permanente study are: Brar SS, Khan SS, Sandhu GK, Jorgensen MB, Parikh N, Hsu JW, Shen AY. How interesting that you are in that area and with that group, although because of the recent diagnosis I don't think you would be one of the 60 patients reported. However, I' m sure their statistical look continues up to present.

JD

[SarahG]

Hello again... So I had my follow up Echo and my EF was at 50-55% (up from 45% at DX), which is exciting! I forgot to ask the other questions you needed, but I have the print out here and I could only find the following numbers:
LVID end diastolic- 4.9
LVID end systolic - 3.4

not sure if they're what you're referring to, so let me know and I'll be sure to ask at my next appointment on the 20th. Also, my cardiologist said that enalopril is safe for breast feeding, but he didn't want to start me on it since my BP is already running at 100/60 or so on Metroprolol and he doesn't want it to get any lower (by the way - the metroprolol is not long acting but my cardio said he only prescribes that for EFs that are much lower than mine). However, he also said he didn't want my pulse to be above 70, but it frequently is between 70 and 75, so I'm not sure what to make of that. I've also been having pretty frequent palpitations. Do you think the enalopril would help to curb those or am I pretty much stuck with them indefinitely?
I'm actually switching cardiologists this time around because the one I have has terrible bedside manner and is very pessimistic about everything and the one I'm switching to is much nicer and more positive. I'm still optimistic about a future pregnancy, assuming everything continues to improve, but what is your opinion on the palpitations? Assuming my EF was normal for a year off medication, but I was still having palps, what would you say about a subsequent pregnancy?

Thank you for your input!

-Sarah :O)

[JAMESFETT]

That's great that your EF is up to 55 %. Your FS (Fractional Shortening), calculated from the figures you gave me, is also normal range, and corresponds with the EF at 55 %. With an EF that good the palpitations are probably just normal, although it would be nice to know from longer monitoring of heart rhythm what exactly the palpitations are. No, I would not use ACE-I in a situation like yours either. I do, however, feel that either metoprolol long-acting or carvedilol, as beta-blocker, is preferable treatment, continued for at least one year after diagnosis, and at least 6 months after return to normal level EF > 50 %.

So far as subsequent pregnancy I like to present best estimate of risk for relapse, and since you have returned to recovery levels EF, with an interval of at least 2 years between pregnancies, your risk of relapse would be in the 10 to 20 % category, which with present data, is the lowest risk group. If there is an additional evidence of normal contractile reserve by dobutamine stress echo, I believe that risk drops below 10 %, but we need more observations to be really sure.

JD

[SarahG]

So I've been absent from the forum for a while, but I just had another echo and was treated with some bad news. My EF has dropped down to 45-50% (was 40-45% at DX, went up to 50-55% at 2 months post DX) and my heart palpitations are back with a venegance. My Cardiologist also mentioned that my heart function has decreased, and not that it's just a margin of error type of reading. I'm currently hooked up to a 24 holter monitor to see exactly what my heart is doing and I have another appointment next week.
I'm currently on Metroprolol (25mg twice a day) and my BP runs around 90-95/60. My Cardiologist mentioned switching to Coreg, but he doesn't want to up my current meds since my BP is so low (my BP has ALWAYS been low, runs in the family).

What is your opinion on treatment that isn't working when BP is already low? Does switching to Coreg sound like a good idea to you?

Have any of you other amazing PPCM ladies had this happen?

Any insight or words of encouragement would be greatly appreciated. I was so happy to be on the road to recovery and am now scared and anxious all the time again.

Thank you.
Sarah

DX June 19, 2007 - EF 40-45%
Baby boy, Gunnar, born June 22, 2007
2 month Echo - EF 50-55%
4 month Echo - EF 45-50% with cardiologist noting that my heart function has decreased since last echo.

[JAMESFETT]

That can certainly happen, but when it does there is then a stong indication to alter treatment; and in your case it would seem most logical to add an ACE-Inhibitor (more important than simply changing from metoprolol to carvedilol), if you can tolerate it, remembering to start low and build up slowly. An alternative to ACE-I is an ARB or angiotensin II-receptor blocker. It is good you are having a Holter monitor to find out about the type of palpitations. Best wishes, I'm sure you'll find the best treatment and subsequent improvement.

JD

[JAMESFETT]

P.S. The deterioration you experienced 4 months after diagnosis is evidence that the process causing the cardiomyopathy had or has not yet been sufficiently checked or stopped. Remember, PPCM pathology untreated builds momentum postpartum when the immune system returns to normal, and leads to increased autoimmunity or increased immune dysfunction. Current best conventional treatment to stop that process is a combination of ACE-I and
B-B.

JD

[Stephanie'sbigheart]

Once on the correct meds. and then the process stops can it start up again after discharged from meds. or even years later?

[JAMESFETT]

Not without a change in the immune system, such as with a subsequent pregnancy. The security of a longer treatment, such as at a minimum one year after diagnosis, helps to assure that the process is healed, and will not reactivate. We continue to learn about this disease, and a good lesson is to never underestimate its seriousness early in the course becasue the usual process is to build momentum in the early postpartum period when the immune system is returning to normal function.

JD

[Stephanie'sbigheart]

Thank you for your quick response Dr. Fett.

You mentioned that a change in the immune system, such as with a subsequent pregnancy. That makes me think that a change in the immune system can happen with diseases like cancer therefore women who had PPCM years prior could be at rist for a relapse. Would you say that is correct or is that something still being studied?

Also does something like a bad cold/flu have enough power to lower the immune system enough for a relapse in PPCM ?

Good luck on that presentation you are about to give!! :) :) :) :)

[JAMESFETT]

We don't know the answer to your last question because it has not been sufficiently studied. However, those late relapses seem to be very rare, aside from the 10-15 % risk of relapse from a subsequent pregnancy. I do think it is wise to be cautious and watchful for any former PPCM patient who does become immune compromised, whether from other illness (such as HIV) or use of immune-compromisiing medications such as corticosteroids. So once recovered, it's not worth a lot of worry.

Thanks for the best wishes. I leave for Orlando and AHA scientific session tomorrow. I have been reviewing the presentation over and over and over and....

JD

[reezlemom]

SarahG: I'm sorry to hear that you got bad news. Hopefully with the change in medications things will quickly be under control and your EF will turn in the right direction again. You'll be in my prayers for very good news.

Stephanie: I wondered those same things, especially since we put my older daughter in daycare 4 hrs, 3 days a week while I was recovering last year. I just wasn't up to running around quite as much as before, in the beginning. I worried a bit about my immune system because we were perpetually ill the whole time, with one virus after another. I literally had one virus-free week the entire summer. Fortunately it did not negatively impact my EF. I do still worry about the cardiotropic viruses though, wondering if I am somehow more susceptible or if my children might be.

[SarahG]

thank you all for your quick replies, advice and good wishes. I will talk to my cardiologist and I'll let you all know what ends up happening.

Trying to stay positive,
Sarah :O)

[SarahG]

Okay - it's been a while since I've posted, but I have another question for you. I just switched to Toprol XL, 50mg a day, and I'm also on Enalapril, 5mg a day. I have natrually low BP, so it's hard to get my doses any higher, so I was wondering if I could expect much improvement on my EF if I can't get my doses higher. My dx EF was 45, it then went up to 50-55, and now is back down to 45-50. My cardiologist isn't convinced it actually went down, more that the margin of error is hovering around 50%. I'm also having a lot of skipped beats... VERY ANNOYING skipped beats. In your opinion, what dosage does one need to be at in order to expect full recovery, or does that really matter? Oh, and it's been 6 months since dx.

Thank you!!!
-Sarah :O)

Happy Holidays everyone!!!

[JAMESFETT]

All doses help, and the best level is the maximum that you can tolerate and need for still improving function. If you look at the thread about "One pathway to recovery" you will see an example of increasing dosages of carvedilol. The same principle can apply to increasing dosages of the ACE-I or any other B-B, such as metoprolol XL, which is to very slowly increase and to give the first higher dose at bedtime when light-headedness from lower blood pressure will be less felt, because you are lying down during the night. that slow titration is much better tolerated than a large increase at one time. Also, as time goes along and LV EF rises, the blood pressure evens out at tolerated levels. Of course you need to work with your physician in determining what dosage to use and rate of increase.

JD