The 411

So I’ve been having some cardiomyopathy symptoms the past couple weeks that I was writing off to the massive amounts of stress we’ve been dealing with. A teacher at the school finally convinced me that I should call the cardiologist and just let them know. Well they pulled me in for a heart echo today and sure enough my heart function is starting to decrease already. I’m right now only 1% higher than I was when they caught it with JD, and much earlier in my pregnancy. I’m currently wearing a lovely Holter monitor for the next 24 hours (man I hate these things) and they are running a bunch of blood work before deciding what medications to put me on.  NO BUENO!  Here is a picture of a monitor like the one I am wearing, granted its obviously not of me but you get the general idea.

The plus is that at least I listened (finally) and went in before it got even worse.  Last time I reacted really well to the medication so I’m hoping it’s the same thing this time around.

Preemie

Well the Periantologist appointment this morning could have been much worse, in my opinion it could have been better but lets focus on the fact that it could have been worse.  Here are just a few highlights:

• I was asked again about terminating the pregnancy.  I said absolutely not, so we moved on from there.
• We have to see the OB every other week and the Periantologist every month till they induce me.
• They could induce me as early as 24 weeks (highly HIGHLY unlikely) but I was told it probably wouldn’t be past 32 weeks.
• Chances are I’ll be delivering at a different hospital than before if the baby has to come too early.
• I pay the periantologist to show me the glass is half empty but I refuse to see it as anything but half full!
• I ALREADY have to start doing the 24 hour urine collection tests, UGH.
• I have to get some breathing thingie to test my breath output daily.
• Chances are good the “bad” stuff will happen sooner in this pregnancy than it did with JD.
• I’m on bedrest officially at 20 weeks (whew I’ll be able to finish school)
• There is a chance of Placenta previa (but we had heard this before)

I think that’s the gist of it.  It was a long appointment.  Let me explain a couple milestones we are shooting for.

• 24 weeks (Sep. 5th): the probability of survival is generally considered to be in the neighborhood of 50%, but the risk for neurodevelopmental problems in survivors is very high.
• 28 weeks (Oct 3rd): Survival jumps to around 90% with
• 32 weeks (Oct 31st): Survival rate around 95% with less of a chance for long term difficulties

I’m optimistic we’ll make it to 32 weeks, but time will tell.  Any way it looks like the little one will be in the NICU but we’ll see.  Good news is JD did great (if you forget about the infection) at 35 weeks and was the size of an average baby.

Cool news is that during the ultrasound I was able to see the baby swallowing and it’s little stomach expanding, it was so cool!!!  He’re is the latest ultrasound pic.

The baby

Today

What a Tuesday. I’m so sorry if you checked earlier and I didn’t post. I’ve needed some time to think about things today.

I didn’t expect the Cardiologist to be a fun appointment but I also didn’t expect some of the things he said. Like anyone else who we’ve told about the pregnancy the doctor wasn’t quite sure how to react. He was shocked, then happy, then worried. I’m so glad we’ve already developed a good relationship with him because we had to have some hard conversations today.

I’m back on a restricted low sodium diet and I will be having a heart echo on the 11^th of May with an appointment right after with the Cardiologist. If the echo shows a significant decrease in function than he asked if we would consider abortion. I was floored, shocked and sad because I thought we wouldn’t have to worry about that. Jeremy said it depended how bad the heart echo was but I told him after we left I just couldn’t do it. I cried off and on tonight because of the seriousness of the situation. It’s just not something I ever thought I would have to ponder. I knew how serious things were, but I think it really hit home today. I didn’t expect him to say congratulations we’ll see you again in 8 months, but I wasn’t expected to get such a big question to think about.

To add hormones to injury when I went to get dressed for class tonight my pants didn’t fit at all and my shirt was starting to stretch over my tubby tummy. I haven’t gained any weight, I’ve actually lost some but apparently my body remembers what it needs to do and is getting a jump start on things. I cried and freaked out since I’ve been trying not to let the entire school know yet. Jeremy had to convince me to just wear some brown pj bottoms and hope no one said anything. Needless to say it was an emotional class for me. We were actually working on our own protocol’s so I just hid behind my laptop all night. I guess I’m going to need to order some bigger shirts to get me through the rest of the year.

I’m sure when I wake up tomorrow things will seem a bit better and I can focus on being optimistic again, but right now I just want to crawl into bed and wait for the 11^th to get here. I’ve decided I will distract myself this weekend with a new movie that is coming out and a date with Jer.

We Have a Heartbeat

I know it doesn’t look like much but the little dot in the blackness is a little heart, it was such a relief to see it flickering on the screen.  I go back again on May 8th to see how things are going.  The doctor couldn’t get a good look to give me a due date, I’m still guessing around December 20th.  It was a super short appointment.  He suggested I take some Sudafed PE to see if the ears popping might be congestion, he did suggest I talk to my Cardiologist about the sudafed since it can increase your heart rate.

Today since we saw a heartbeat we have told most of our family and friends but I still plan on not telling the School for a while more if I can.  If you’re new to the pregnancy blog welcome and feel free to read my rantings about the past few weeks and the roller-coaster that has been this surprise.  I know some of you are wondering if we were “preventing” at all, since it seems to be one of the first questions people are asking me.  Here’s the skinny….

YES we were preventing.  I don’t care how much I wanted another baby after JD, when the doctors said it could be fatal we used contraception.  Another pregnancy was not a risk we were willing to take, especially not Jeremy.  SO to answer the second question I get about why I didn’t get my tubes tied or Jeremy get snipped.  This is a very personal decision.  In the back of our minds we always kind of hoped that medicine would advance to the point where we might be able to try again.  The advances with Pregnancy Associated Cardiomyopathy in the past 5-10 years are amazing so who knows what the next 5 would bring.

To leave I thought I’d give you some stats.  There is a support group I joined when I was pregnant with JD and here is what the Dr. from the group has to say about the risks:

Estimated Risks* in Subsequent Pregnancy Following Peripartum Cardiomyopathy:

1. If you do not wish a subsequent pregnancy OR if you have not recovered systolic heart function (Left ventricular Ejection Fraction > 50 %) then you are NOT ready for another pregnancy. (last June my EF was at 52%)

2. If you wish a subsequent pregnancy AND if you have recovered systolic heart function with a LV EF > 54 % (I will probably have another Echo in the next few months to see where my % is now), estimated approximate risks are:

A)Risk of death less than 2 %

B)Risk of recurrent heart failure (relapse of PPCM):
1-Approximately 10 % if stress echo shows normal contractile reserve.
2-Approximately 15 to 20 % if stress echo does not show normal contractile reserve.

3. If relapse occurs during the subsequent pregnancy:

A)There is available treatment that is very effective

B) Probability of survival is over 98 %,
Probability of safe delivery of healthy child is over 98 %,
Probability of full recovery of heart function drops to estimated approximately 50-75 %, meaning that a relapse carries with it a greater possibility of sustaining additional heart damage. THERE IS NEVER A GUARANTEE THAT RELAPSE WILL NOT OCCUR, AND THERE IS ALWAYS SOME POSSIBILITY THAT A RELAPSE COULD OCCUR.

James D. Fett, MD
1-18-2008

*References:

1.Elkayam U, Tummala PP, Rao K, Akhter MW, Karaalp IS, Wani OR, et al. Maternal and fetal outcomes of subsequent pregnancies in women with peripartum cardiomyopathy. N Engl J Med. 2001;344:1567-71. Erratum in: N Engl J Med 2001;345:552.

2.Sliwa K, Forster O, Zhanje F, Candy G, Kachope J, Essop R. Outcome of subsequent pregnancy in patients with documented peripartum cardiomyopathy. Am J Cardiol. 2004;93:1441-3.

3.Fett JD, Dowell DE, Carraway RD, King ME, Pierre R. Peripartum cardiomyopathy in the Hospital Albert Schweitzer District of Haiti. Am J Obstet Gyn 2002;186:1005-10.

4.Fett JD, Carraway RD, Perry H, Dowell DL. Emerging insights into peripartum cardiomyopathy. J Health Popul Nutr 2003 Mar;21 (1):1-7.

5.Fett JD, Christie LG, Carraway RD, Sundstrom JB, Ansari AA. Learning from a population-based peripartum cardiomyopathy registry. Circulation 2004; Suppl III, 110;727.(Abstract presented at American Heart Association Scientific Meeting, New Orleans, Nov 2004.)

6.Fett JD, Christie LG, Carraway RD, Murphy JG. Five-year prospective study of the incidence and prognosis of peripartum cardiomyopathy at a single institution. Mayo Clin Proc 2005 (Dec);80:1602-06.

7.Fett JD. Outcomes for subsequent pregnancies following pregnancy of diagnosis of peripartum cardiomyopathy. Circulation 2005;112, No 17, Suppl II, 593:2808. (Abstract presented at American Heart Association Scientific Meeting, Dallas, Nov 2005.)

8.Fett JD, Christie LG, Murphy JG. Outcomes of subsequent pregnancy after peripartum cardiomyopathy: A case series from Haiti. Ann Int Med 2006;145 (4 July): 30-34.

9.Lampert MB, Lynn Weinert BS, Hibbard J, Korcarz C, Lindheimer M, Lang RM. Contractile reserve in patients with peripartum cardiomyopathy and recovered left ventricular function. Am J Obstet Gynecol 1997;176:189-95.

10.Dorbala S, Brozena S, Zeb S, Galatro K, Homel P, Ren JF, Chaudhry FA. Risk stratification of women with peripartum cardiomyopathy at initial presentation: a dobutamine stress echcardiography study. J Am Soc Echocardiogr 2005;18:45-8.