moment

[margiehubbell]

I had this thought that was so clear the other day, that I have wanted to have another baby ever since my diagnosis, but I have been too afraid with all my doctors telling me not to risk it, then I thought how we should just go ahead and stop agonizing over it before I am too old. UP AND DOWN, these emotions are so strong. I have been off all heart meds for over 6 months and doing good. My EF is normal, sometimes I get worn out, but doesn't everyone? Same things, different day, just seriously considering going for it.

[tammer]

I often wonder how those who have opted to "go for it" make that decision? How they overcome the terrifying risks and do it anyways.

I think a big factor for me (although I'm not there yet) is the "what ifs" they are pure torture. That and I seriously don't know if my parents could handle the stress. After going through all the hell of ppcm, I think I've shaved years off my parents lives with the stress of it all!!!!!

Hard decision for sure.

Tammy

[JAMESFETT]

It is the unknown that causes the great agony of decision-making. That is why we have tried to narrow the risks by looking closely at who has the highest risk of relapse of heart failure with a post-PPCM pregnancy. What we have learned is that those with the LOWEST risk (but of course no guarantee) are those who:

1)have regained LVEF to 55 % or more,
2)have been able to wean off all heart failure medications and still remain at LVEF of 55 % or more, and
3)Show adequate reserve through a stress test, either a)exercise stress echo with measure of LVEF gain or b)peak oxygen consumption (VO2) and peak cardiac output (CPO) during maximal exercise.

It is also an observed fact that the ones who have the above 3 characteristics are also the ones who, in the event of relapse, are the most likely to recover to pre-subsequent pregnancy LVEF levels, when treated appropriately.

JD

[margiehubbell]

I appreciate all the feed back. I meet all of the above criteria, but am worried from all the negative resposes from professionals, family, and friends.



I recently read an article on the internet :


Pregnancy-Related Heart Failure Explained, Symptoms Reversed By Simple Hormone Blocker
ScienceDaily (Feb. 13, 2007) — A new study reveals the mechanism responsible for a rare but potentially devastating form of heart failure that sometimes afflicts women late in pregnancy or shortly following childbirth, researchers have reported in the Feb. 9, 2007 issue of Cell, a publication of Cell Press. The so-called postpartum cardiomyopathy (PPCM)--which is estimated to complicate one in every 1,300 to 4,000 deliveries in the U.S. --is considered among the leading causes of death among postpartum women in industrialized countries.


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The researchers discovered that mice whose hearts lack a gene that enlists the activities of critical antioxidants develop PPCM. Under those stressful conditions, the mice develop increased levels of another enzyme that cleaves the nursing hormone prolactin, forming an aberrant protein that damages heart muscle. As evidence that the findings in animals hold for humans, the researchers found a similar imbalance of proteins in the cardiac tissue of PPCM patients.

Moreover, the report finds, both in mice and in a small number of patients at high risk for PPCM, that the prolactin-blocking drug bromocriptine might reverse or prevent the often fatal cardiac disorder. The drug is already known to be a safe method for inhibiting prolactin in women who wish to halt milk production, the researchers said.

"This disease, while rare, can be very traumatic," said Helmut Drexler of Medizinische Hochschule in Hannover, Germany. "Survival can be very poor and some who survive require a heart transplant."

"Nobody knew why women develop this," he said. "We've identified a mechanism and, more importantly, based on our findings, a potentially very effective means to prevent the disease."

Physicians had previously treated women with PPCM with the same heart drugs, including beta blockers and ACE inhibitors, that are traditionally prescribed for any patient with heart failure, he said.

"In all the women who have received the bromocriptine treatment, it has worked," added Denise Hilfiker-Kleiner, also at MH-Hannover. "It has prevented them from getting the disease again."

The women treated were study collaborator Karen Sliwa's patients in South Africa who had already developed PPCM with a previous pregnancy, she said. Women who develop PPCM and survive are at increased risk for developing the condition should they become pregnant again. If they do, they have an approximately 50 percent chance of dying, Hilfiker-Kleiner said.

If our early results are solidified in a larger clinical trial, "this drug could really make an immediate difference," she added.

The researchers found that mice lacking the gene STAT3 specifically in heart muscle cells consistently develop PPCM after giving birth. Indeed, two-thirds of STAT3-deficient mice died after delivering their second litters. STAT3 is involved in protection of the heart from oxidative stress by increasing the levels of antioxidant enzymes. STAT3's role is particularly critical immediately following and in late pregnancy, when oxidative stress is generally high, Hilfiker-Kleiner said.

"On the whole, the oxidative stress may protect against infection," she said. "But at the same time, sensitive organs like the heart need powerful antioxidants. STAT3 is part of that defense mechanism."

Without STAT3, the mice exhibited obvious signs of heart failure as cardiac cells became oxygen deprived and died. Those symptoms were linked to an increase in the enzyme cathepsin D, which clips prolactin hormone to a shorter form that blocks blood vessel formation and causes cell death.

"The 16 kDa prolactin is a powerful destroyer of endothelium and has even been considered as a cancer drug capable of destroying tumors' blood vessels," Hilfilker-Kleiner said. Endothelium is the thin layer of cells that lines blood vessel walls.

"The destruction of endothelial cells in the heart essentially lowers the blood supply," she said.

To confirm the role of the altered form of prolactin in producing heart failure, the researchers treated mice with bromocriptine, a drug that blocks release of the hormone. Mutant mice treated with the drug all survived two pregnancies, while 70 percent of untreated mutant mice died. Bromocriptine treatment also preserved blood vessel formation and cardiac function in animals lacking STAT3.

The research team further found that the hearts of five patients requiring an organ transplant due to PPCM showed reduced STAT3 protein levels compared to normal. Blood tests also revealed that lactating women with PPCM showed signs of high oxidative stress and elevated cathepsin D levels compared to healthy mothers. Mothers with PPCM also had high levels of the 16 kDa prolactin, a form of the hormone that is normally barely detectable.

As a preliminary clinical trial, the researchers treated six women at high risk for PPCM with bromocriptine in addition to standard therapy up to 3 months post-delivery while six high-risk patients received standard treatment. As expected, prolactin returned to non-pregnant levels within two weeks in patients receiving the drug.

Three months after childbirth, all six bromocriptine-treated women had preserved or increased heart function and all survived the 4 month observation period. In contrast, in the group not treated with the drug, three women had died within 4 months.

"Based on our experimental and initial clinical findings, bromocriptine may represent a novel therapeutic option to treat patients with PPCM or to prevent the disease in patients who suffered and recovered from PPCM in a previous pregnancy," the researchers concluded.

The researchers include Denise Hilfiker-Kleiner, Karol Kaminski, Edith Podewski, Tomasz Bonda, Arnd Schaefer, Anja Quint, Ulf Landmesser, Carola Doerries, Maren Luchtefeld, Nils H. Zschemisch, Gunnar Klein, Andres Hilfiker, and Helmut Drexler of MHH in Hannover, Germany; Karen Sliwa and Olaf Forster of Chris-Hani-Baragwanath Hospital, University of the Witwatersrand in Soweto, South Africa; Valeria Poli of University of Turin in Turin, Italy; Michael D. Schneider of Baylor College of Medicine in Houston, TX; Jean-Luc Balligand and Fanny Desjardins of University of Louvain Medical School in Brussels, Belgium; Aftab Ansari of Emory University in Atlanta, GA; Ingrid Struman and Ngoc Q.N. Nguyen of Université de Liege in Sart Tilman, Belgium; Gerd Heusch and Rainer Schulz of Universitaetsklinikum, Essen in Essen, Germany.

This study was supported by the Jean Leducq Foundation, the Deutsche Forschungsgemeinschaft, Deutscher Akademischer Austausch Dienst, and the Foundation for Polish Science.

Hilfiker-Kleiner et al.: "A Cathepsin D-Cleaved 16 kDa Form of Prolactin Mediates Postpartum Cardiomyopathy." Publishing in Cell, 9 February 2007. DOI 10.1016/j.cell.2006.12.036. http://www.cell.com

[jeannie]

I totally understand it when you say that you are wooried about the negative responses. I am too. I know that if I decide to go ahead with another pregnancy, they will support me, but each one of my doctors and my mom and sister told me that it really worries them. As for me and my husband, we go back and forth everyday. But deep down inside, I think I really want to go ahead and get pregnant.

[JAMESFETT]

We are focusing on the prolactin hypothesis in PPCM, and laboratory investigations of the essentials in that hypothesis are included in the Peripartum Cardiomyopathy Network study being carried out at the present time in USA. Hopefully, we will have more information to determine the potential for prolactin inhibition to help.

Right now, it looks promising in some, but not all PPCM mothers have the purported cardio-toxic prolactin metabolite present, and even without using any prolactin inhibition, almost everyone improves and over 50 % of women with PPCM recover completely with the use of diuretics, beta-blockade and ACE-inhibitors (sub hydralazine if before delivery). But for the 40 to 50 % of PPCM mothers who do not recover to LVEF > 50 % with conventional treatment, we need alternative therapies.

We should know more before too long about the bromocriptine treatment for prolactin inhibition. There may still be safety issues with the peripartum use of bromocriptine, and it certainly takes away breastfeeding, which conventional treatment does not, realizing that breastfeeding mothers can use the ACE-I enalopril, or substitute hydralazine.

JD

[margiehubbell]

We decided not to risk my health. I am so sad. I can't imagine the hurt I would cause my family if I choose to become pregnant and something happened that negatively impacted my health. I get a lot of feedback from my loving family. I want another pregnancy but the moment is clouded by my reality.

[Erin]

I'm sorry for your sadness and disappointment; it can be such a difficult and sometimes painful decision. <<hugs>>

[lisamavs]

I know how hard it is to make a decision like that. My DH and I put off his vasectomy a few times because we had moments too then we thought about the risk and affects on our familes. We did finally decide not to have any more children ourselves but we often think about adoption. I know there are some ladies here who were able to make a decision to have another baby and some who have not. It is a hard decision and one that really depends on your own personal experiences. I so sorry to hear about your struggles and I wanted to send you all a big ((HUGG))

[bethlewis]

My husband and I decided not to have anymore children also. We haven't decided whether we are going to go the IUD route or if he will get snipped? My insurance won't cover any of it so right now none are an option. We are moving back to the east coast to be close to our family and whatever new job I get hopefully the insurance is a little better about birth control????????? The big factor for us in the decision was we didn't want to risk my health and not being around when we are happy. To be honest now that my son has hit 4 months old and is sleeping through the night I don't know if I could go back to the newborn days. I am finnaly getting some sleep YAY!!!!!

[Mrs. Smith]

I know it is a really hard decision to make but as for me, I will choose to not take that risk. I already have 2 beautiful children and I couldn't risk something happening to them and them not having their mom. I'd rather be here for the children I have already then worry about having another. If we do decide we want another we will choose to adopt since there are many children out there in need of a family.

[lrye]

I know exactly how you feel. I think my problem is having someone tell me not to have more babies makes me want one even more. My husband is totally against it. We also, have 2 children and are very happy. :) :)