I had my 28wk echo and got my results...

[AimeeKY]

So last Friday I get a call from the Heart Failure Clinic- the head cardio wanted to see me herself and changed my appt and echo to Monday. I go in and she says, "so I have heard you have been chatting with a website and dr for PPCM, who is the dr?". So I tell her and she mentions another dr, whose name I think Dr. Fett mentioned before who was at somewhere in South Carolina when she was there and mentioned the NIH not giving funding a few years ago for PPCM research (and PACM). She told me all this because she wanted to reassure me, while this is very rare, she has seen and dealt with it and they will have a plan in place for me and that I looked very well compensated and she was very pleased with my progress. She told me NOT to concentrate on the EF# because she said I am not on the optimal levels of medicine and while they are very pleased with how I am doing, she doesn't expect a change since I haven't been on the meds even 2 months.
So I get the echo and then I leave. I can't tell you how much anxiety I had and what a relief it was that I was able to leave. In January when I had the echo and found all this, I was immediately admitted. So after playing phone tag with the cardios I got the news.....no change. I must admit, I was kinda disappointed but they wanted to remind me....you HAVEN'T gotten worse which is very good. So I still have the EF in the 20-25% range. So they met with the obs to tell them the results. The head cardio did tell me, it is possible I did get some improvement, but with the changes that come in the 3rd trimester, maybe that is why I didn't show improvement. I am going to the drs 4 times a week now....2 of the visits are to monitor the baby.....she is doing GREAT- my fluid level is at the higher end of normal which is awesome!
So the plan is to keep me pregnant as long as I don't have symptoms but not past 36wks. Depending on the symptoms I have, I will go into the hopsital and they will try to keep me as stable as possible but the moment my EF slips, they will deliver our little girl. They did up my Hydrazaline to 20mg x 3 a day and will try to up my others heart meds.

I feel good and a continue to have faith that I will make it through this rough road. My mom and I went shopping today to get some clothes for my new niece who was born on Tuesday and for my little girl. It was fun....

So Dr. Fett.....anything you recommend I should be doing? Thoughts (good or bad;) )

Thanks everyone!!!
Aimee

[JAMESFETT]

You may want to discuss this with your cardiologist:

--do you need an external pack defibrillator to wear on your fanny pack as a precaution to detect and treat arrhythmias?
--do you need some form of safe anticoagulation with your LVEF still in the 20 to 25 range?
--that's good to increase the hydralazine. If it makes you have too much rapid heart beat, you may also need to be on nitrates
--are you on the beta-blocker, metoprolol?

Stability is good. We'd hope for some gain in LVEF before term. Best wishes,

JD

[AimeeKY]

Thanks Dr. Fett!
I will definitely talk to her about the things you mentioned. I have actually tolerated the increase in hydrazaline very well and my pulse rate remains in the 80s. I am on metropol (100mg) and they are going to increase it this week since I just started the 100mg and I have responded well.

Question for you.....is it possible for me to feel good and not have symptoms but still have that low of an LVEF? I mean, I have been more active and such...is that just the meds helping me?

Thank you Dr. Fett......I was very pleased to know the cardio dr was very open to discussing the suggestions you have given me.

[Natpow]

Hi there was just reading this and wondering about a couple of things, I hope you don't mind me posting.

Have you been diagnosed with PPCM whilst preg?

Were you recovered before you got preg? if not what was your EF?


Thanks xx

[AimeeKY]

Hi Natpow!

I have a 2yr old son. I didn't have PPCM with him (that we know of). My cardio dr suspects I did develop it but just never had the symptoms bad enough to cause concern. They are classifying my case, which is the one on in this area right now, as PPCM/PACM (pregnancy associated cardiomyopathy). So I would have to say, if I did have it after my son, I didn't know it, so I would assume it meant I wasn't fully recovered. Now there is one other cardio dr who is part of the group who suspects when my son had strep throat, I got it and it just never cleared my system (I complained to the drs I felt like I was getting strep since I had it once before in the summer from him but they never tested me).

So there are theories out there about why this happened during this pregnancy, but no one can tell me for sure. I found in January when I was 5months and that time, I felt HORRIBLE, couldn't breathe, walk up steps, sleep and coughed a lot. Today, I am able to sleep lying down, cough a little somethings, and can walk up all our steps in our house a couple of times before I get a little winded.

They say I am a rare type- Serena and Twialah are the other 2 on this board who had PPCM with their second pregnancies.

Are you preggo or considering it?

[Natpow]

No i got PPCM with my first preg. I gave birth May 18th last year, and now 10 months later my EF is at 38%.
I would love another child in a few years, but I would only consider it after I'd recovered and got off meds. Whether or not I ever recover is something else but ya just don't know what the future holds. My cardiologist drums in to me no more children no more children...like you would not believe!

I bet you are beside yourself with worry, I sincerely hope it all works out for you.


Nat x

[JAMESFETT]

I'm glad you are doing well with the metoprolol in the picture as well.

We have used up to 25 mg 3 x's daily hydralazine without having to add nitrates, so you are well within that parameter.

Yes, you could feel better, be free of previous symptoms, and still be roughly the same LVEF as before---but remember, you are in the stresses of pregnancy, and without those medications you would be symptomatic and much worse on LVEF. So at this stage to be advancing in pregnancy and to be no worse on LVEF, but much better so far as symptoms is a very good sign. I believe that improvement in LVEF will follow your medication increases, as you seem to be tolerating the medications very well.

This very same information I am providing you (to work out or coordinate with your cardiologist) is also available through the current medical literature on PPCM, so we have a very scientific basis for what we are offering on the internet; and of course, a portion of the medical literature is coming from our own work with PPCM--a work which we anticipate expanding through quite a number of USA medical centers (30 or 40).

JD

[tabs]

That is great news Aimee!! My doctors always said the same thing, both while pregnant and after, no change is far better than getting worse! Praying that you will stay the course and even see improvement as your pregnancy progresses.

Twilah

[AimeeKY]

Thanks Dr. Fett! I have decided to just go with the no change is a great thing approach- while DH was at work, I finished our son's "big boy room" and we transitioned him this weekend. I just feel too good not to do the stuff I need to get done- I feel like a "normal" pregnant person....I forget on the weekends that I am not. LOL

Tabs you are right- not change IS so much better than getting worse. That made me remember when I first got out of the hopsital and the obs said "around 27 weeks you will go back into the hospital because you will get very very sick and it is not too late to terminate this pregnancy". I LOVE IT when I go in and he is there.....he can't believe how well I am doing and when there is a different dr with him (it's a teaching hospital and since I am rare, they always bring them around when I am there!) he will say she has heart failure and they just look at me with shock.
So another week down.....I am waiting for the 32-34 wk time frame and getting things prepared.

Natpow- Yes it was definitely a shock and since I was 5 months along they all tried to get me to terminate the pregnancy multiple times, except the head cardio- she asked once if I was going to and when I said no, she never asked again. When we found out our baby was a girl, I said our family is complete (before I knew this was going on) and when they all have said no more babies, it gave that statement even more meaning. What was your EF when you were diagnosed?