new ppcm'r

[momofthree]

Hi Everyone. I am in VA. I am 33 years old and a mom of three (2 boys and 1 girl). I was diagnosed on Oct 31, 2004. I am recovering but it has been tough. One major relapse almost cost me my life and had me emergency/medically evacuated off of Okinawa where we were stationed with the USMC. My husband was in Iraq at the time and was not there for delivery either...so he came home to a lot. My wonderful friends saw me through it all and got me off the island. I was at 5% EF, in liver failure and retaining 30 lbs of water. This was in mid Dec...my doctor had taken me off all my meds so I went back into failure.

After a month and a half in the hospital ICU or PCU in various States while I was sent to the East Coast from Japan, I am with my kids and hubby at my inlaws. I have had tremendous support. I am so happy to be with my children as I was separated from them from mid Dec. til a week and a half ago. Our youngest girl (the baby) was in Okinawa while we awaited her passport and our boys were with my inlaws here while I was in the hospital first in Hawaii and then in Portsmouth, VA.

I am on all the typical meds and am thankful for all the insight given by other survivors. Yes, I will survive and yes I will improve and be restored. I have great faith in a great God and a wonderful family to see me through those tough days. Last ECHO was 15%. Next ECHO is Apr 4th. I was on IV meds for a long time and had to get over other issues (liver failure, retention, deconditioning, vomiting for 3 months, etc) and think that my heart is next in line to recover. Your love is welcome! And I'd love to support others.

God bless and keep on recovering,
Alison

[Yvonne]

Alison,

I just want to say: WELCOME!
For me this board is a great help and I'm absolutely sure it will be for you to.
You sound like a very strong woman and with your attitude you've already won half the battle. Keep going!

Yvonne

[Laurie]

Wow, welcome. I too was in liver failure along with kidney failure. My ef was 5% at diagnosis. My bio is posted. I also have an autoimmune disease which made me physically disabled. Lots of physical therapy and occupational therapy helped. Today my ef is around 45-50%. I feel good most days and thank my lucky stars above. I cannot imagine being in your shoes. I was in the good old USA and didn't need to travel far for great medical care. I also have two kids (twins)...not three. You had your plate full. Best wishes for continued improvement. I want to thank you and your husband for your support to our nation. I think military families are awesome!!


Laurie
PPCM 2000
Mom of twins

[SerenaWelsh]

Hi, Alison.

I'm so glad you found us, and that you are starting to recover! You've already accomplished so much in overcoming distances to get to the medical care you needed. Are you still in Portsmouth, or have you already headed back to Okinawa??

[Lisa V]

Welcome Alison,
You have come to the right place for support, help and advice. The woman on these boards are tremendous life savers and we have all come a very long way together. It sounds as if you have been through alot and I am glad to hear that you are on the right track to recovery. You must give your heart time to heal and it will. I know it is hard with 3 children but you do have family support and you need that more then ever now. Please let us know what the results are of your echo on April 4th. Just remember your EF is just a number, what really matters is how you FEEL. Take care

[mikeyandBellesmommy]

Hi and welcome, I am so glad you found us, like the others have said this is a wonderful site with tons of help and support..

Cari

[JAMESFETT]

Alison, that's an inspirational story! Now I know better how to pray for you and for your healing. I am glad you are a beacon of hope to other PPCM mothers. Neither you nor your doctors should despair for I am utterly convinced that you will experience continuing healing. Did you, by chance, have any inkling that in your previous pregnancy(ies) you had some similar symptoms of heart failure? Most PPCM patients are diagnosed when they have symptoms of heart failure and we have no idea what their left ventricular ejection fraction was when they started that pregnancy. We are working on trying to find a screening test that might give a clue weeks and months before symptoms of PPCM develop that something is happening. God bless you.

James

[JennNIN]

I don't post or visit much but I just want to say welcome! I was diagnosed with an ef of 15% in November. I'm sure you're going to recover!

[SarahsMom]

Alison,

WOW, what a story! That's unbelievable...in a foreign country and everything, geez...you could write a book. Out of curiosity, were the Japanese doctors on top of things? I'm so interested in your story.

Take care, rest and let us know how you're doing, we're all here for you if you need us.

Love,
Kari

[Anny311]

Welcome!!!

I am so glad you found us and are doing well. Hoping and praying you continue to improve....

Anny311

[momofthree]

Hi. I did not see any Japanese docs. I was going to be sent "out in town" until a military internal medicine doctor heard of my issue and came to the ER and said for them to do an ECHO. He knew of the condition and was able to initiate some treatment. Unfortunately, he had no personal knowledge as a doctor and there are no cardiologists on Okinawa for the military. There is a Naval Hospital there. Thanks for your support and your inquiry. If you want to know more I would be happy to share. Alison

[marissar]

I was dx in July 2004, EF of 15-20, end stage heart failure, 35 pounds of fluid, lungs 90% full, and heart filling up.Not responding to meds and it actually says on the reports, such a sad sad case send to Duke for transplant, its the only hope. Then when I came home I was told you will have to have a transplant within 6 months and was put on 9 meds. 7 months later,EF of 65 and on 1 med. Oh and still have my own heart. At my last visit he said " You recovered, that should have never happened, and so fast."
Well I beat the odds and you can to.

[dawn]

That's some story!

Welcome, glad you found us!

dawn
4.5 yrs post diagnosis

[tabs]

Alison, Welcome. I am so glad that you found us. I echo Dr. Fett's question asking if you think you may have had this with your previous pregnancies. I ask because I also have three children (2 boys and a girl). It was in my third pg that it was discovered I had an ef of 43% (I was only 12 weeks pg at that point). One week after delivery I had an ef of 7%. It is now almost 5 years later and I now have an ef of 45%. We are pretty sure that I had it with all three pgs, but went undiagnosed. My husband is also in the military, but he is in the Canadian Navy.
Twilah

[Yvonne]

Hi,
Now you mention this, I think I had it in my first pregnancy too. In retrospective I recognize some 'feelings/ symptoms'. One year after my first pregnancy I felt as normal as before, so I think I will be recovered. After my second pregnancy I developed more serious symtomps and ended up in hospital with an EF of less then 15%. Now I'm on the way back up (EF almost 40%, 6 months after). And funny enough my husband is also in the navy (Royal Dutch Navy, that's why we live in the UK). So a lot to share!