Speaking of God.... WHERE WAS HE?
Did I slip his mind? Did he forget me for a second??
Transport came and I was stared at as I was loaded in the ambulance and driven away...
Just crying and crying as the distance between my baby and I grew larger....
I've never been to the hospital I was being transported to, but heard it had wonderful care. I was wheeled up the back door and up to the 6th floor... The Cardiac Care Unit. I passed room after room of {gulp} elderly people.
Family members of some patients gathered outside their room and were crying. Nurses hustled beside my stretcher to help get me on more monitors and get settled.
"oh look her toes are so cute. Its nice to see such cute feet..."
Are you serious? Im here dying and you are all oohhing and ahhing over my new french pedicure...
Ok, for the record... my toes DID look awesome!
After they settled me in and made me take about 10 pills, iv meds and answered a million questions... a team of cardiologists came in.
They listened to my heart and then all but 1 walked out.
He sat down next to me and very kindly began to talk...
"Do you understand what is happening to you?...."
Did I mention I was still crying?? Ok...SOBBING?
" You have something called Peripartum Cardiomyopathy. Basically your left ventricular function is failing. Your heart muscle is not able to pump normal which is the cause of all the water retention... because of the failing heart muscle, your getting all of these symptoms. We are going to do everything we can to help alleviate your symptoms and help you.."
"But am I going to get better? Will I die?"
"well, lets not think ahead. Lets take this moment by moment and run some tests. We need to see just how bad your heart is damaged. We will run a test to get your ejection fraction. (EF) normal heart function is 55% or higher. Before we know anything, we need to get you on proper medication to help your heart pump and find out your EF... "
By this time my husband was back. He had put the word out on Facebook for prayers and the word spread. People all over began adding me to their prayer chain and lifting me up in prayer. To this day, I cannot express enough thank you's to my prayer warriors who stood in for me when I was too devestated to say the words.
The Drs didn't say what I wanted to hear. I wanted to hear that I would be just fine. After a few days and some medication, I would be fine.... But they would not. They danced around the subject.
A nurse came in and mentioned to me that someone that worked on this floor also was a PPCM survivor... but at the time, I didn't pay much attention. I just cried and cried until I fell asleep.
The next day I woke up and as I looked in the mirror, I noticed just how swollen my eyes were from crying...
" Oh great... now their gonna think Im a crack head... not just a heart patient."
I washed my face. and greeted the morning nurse. She was rather chipper and didn't blink twice at my swollen face. I asked her if it were ok to bring up my baby. He was 5 days old and I needed him.
She told me she would check. Things had been pretty busy last night. Apparently someone tried to pass away and the nurses spent 12 hours trying to keep him alive... 2 doors down from me.
Oh great! Im on the dying floor....
word spread fast though and all the nurses kept popping in to see me and perhaps catch a glimpse of a little baby.
" we never have young moms and babies on our floor."
Everyone was precious and moved mountains to make sure I had everything I needed for my Baby.
And hubby brought him up. I was calm and happy and surprisingly peaceful about everything.
When my nurse came back in, she mentioned she had had ppcm about 6 years ago... bad. She almost needed a transplant. But the Drs were wonderful and now she is fine. Off all meds and as healthy as a horse.
She was my angel.
She came in hour after hour and told me I would be fine. I would live to raise my children and live to see old age. She answered my questions... all of them.
She gave me the reassurance the Drs. wouldn't. And I was so thankful for her. I knew she was God-sent. God's way of letting me know, that even though this happened... He would see me thru... and send guidance along the way.
Later that afternoon, my cardiologist came back in to tell me my Ejection fraction was between 30% and 40%. He made it quite clear that when I first came in, he thought I would be much worse. Based on your bloodwork and your symptoms, we expected a much lower number...
Again, I knew God had intervened.
I was borderline moderate/severe heart failure.
I remember clapping and smiling at him because my numbers were better than we all expected...
And he thought I was crazy.
But I was happy. Anything below 25% would qualify me for a transplant... and I could keep my heart. I didn't need a ventilator, I woudn't require a heart pump...
I remained in the hospital for three long days. On blood pressure medicine, beta blockers and diuretics to remove ALL excess fluid. In a 24 hour period, I lost over 20 pounds. I also received one shot a day in my stomach of lovanox which was to prevent blood clots. Since my heart was pumping so poorly, blood clots were common. More meds helped my heart slow down, other meds helped my heart pump better. Sleeping pills at night because I was afraid to sleep... If I closed my eyes... would I wake up??
Finally it was time for me to go home.
I couldn't wait. My symptoms were under control, I was taking enough medicines to choke a horse, and they felt that even though my heart was in the moderate/severe zone... they managed to pull me out of acute heart failure. I was holding steady. I was responding very well to all the treatment and they stopped the progression. Prayerfully all my heart could do was go up.
Every morning, I asked my doctor if I would get better... and every day He told me to not think that far ahead. Today was good. Lets be happy with today.
But my hope had returned and God had supplied the peace I needed to see me thru... and I was
HOPEFUL!
I remained under the close eye of my Dr, and was on strict orders of rest.
My recovery was slow and I have had a few set backs. My first Drs visit after being discharged brought on an anxiety attack... before I even left the house. I was afraid I would go back and they would re-admit me because my heart was failing again. The reality of my situation hit me hard that day. Thank God My favorite Italian, Michelle drove me and took notes as the Dr rattled off a list of instructions.
Anxiety attacks are common with PPCM patients... or for any heart patient. You only have 1... and organ that represents life. If it starts to fail....
Prayerfully, I have only had a handful of anxiety issues and heart related issues where I have had to call my Dr. I was a lucky one. Even my Cardiologist kept saying how happy and how surprised he was on how I recovered so well. Most women aren't so lucky. Their recovery takes years, and many complications along the way.
4 months later and my heart function is back to normal... by the skin of its teeth... But it is. In time Im praying my heart function will continue to rise. Im off restrictions but remain on lots of medicine. I weigh myself daily to make sure I am not retaining water. With little known about the cause of Peripartum Cardiomyopathy, The problem lies in when to take the women off the meds... and if they do, will they slide back into heart failure. Studies say no... but reality says yes... sometimes.
You see, the studies are old. Dr's are not aware of PPCM. This can happen to anyone at anytime...and up to 5 months after delivery. Most moms who are finally diagnosed are told they will die. Husbands are told to make arrangements. Lots of the Drs never had a patient with PPCM... but its real. And striking 1 woman in every 1500-3000 live births.
Looking back, I had PPCM with baby #3... and I went to the ER and told I was fine. It was stress. A common misdiagnosis. By the grace of God, I went on to have 3 more babies and didn't die... before it struck again....Mortality rates double with a subsequent pregnancy after having PPCM....
Also looking back, I was in heart failure the last month or 2 in pregnancy... but at the time I assumed it was just those 9 month struggles. In summertime... chasing after 6 kids...
For me, Im not allowed to have any more children. The risk would be too high. After surviving twice, the 3rd time won't be pretty.
But GOD had me in the palm of HIS hand for sure. Perhaps to tell others... to make Dr's aware that this is REAL and not so rare after all.
I was the first patient my Ob/Gyn had ever had with PPCM. You can't find this in the pregnancy books...
Not enough studies have been done.
Too many mothers are dying....
So please, share this blog post. Not to scare anyone, but to know the signs. My passion is to get PeriPartum Cardiomyopathy just as common as Gestational diabetes and Pre-eclamsia.
Will you join me in getting the word out...
Will you help save a mothers life??
XoXo
GiGi
Family members of some patients gathered outside their room and were crying. Nurses hustled beside my stretcher to help get me on more monitors and get settled.
"oh look her toes are so cute. Its nice to see such cute feet..."
Are you serious? Im here dying and you are all oohhing and ahhing over my new french pedicure...
Ok, for the record... my toes DID look awesome!
After they settled me in and made me take about 10 pills, iv meds and answered a million questions... a team of cardiologists came in.
They listened to my heart and then all but 1 walked out.
He sat down next to me and very kindly began to talk...
"Do you understand what is happening to you?...."
Did I mention I was still crying?? Ok...SOBBING?
" You have something called Peripartum Cardiomyopathy. Basically your left ventricular function is failing. Your heart muscle is not able to pump normal which is the cause of all the water retention... because of the failing heart muscle, your getting all of these symptoms. We are going to do everything we can to help alleviate your symptoms and help you.."
"But am I going to get better? Will I die?"
"well, lets not think ahead. Lets take this moment by moment and run some tests. We need to see just how bad your heart is damaged. We will run a test to get your ejection fraction. (EF) normal heart function is 55% or higher. Before we know anything, we need to get you on proper medication to help your heart pump and find out your EF... "
By this time my husband was back. He had put the word out on Facebook for prayers and the word spread. People all over began adding me to their prayer chain and lifting me up in prayer. To this day, I cannot express enough thank you's to my prayer warriors who stood in for me when I was too devestated to say the words.
The Drs didn't say what I wanted to hear. I wanted to hear that I would be just fine. After a few days and some medication, I would be fine.... But they would not. They danced around the subject.
A nurse came in and mentioned to me that someone that worked on this floor also was a PPCM survivor... but at the time, I didn't pay much attention. I just cried and cried until I fell asleep.
The next day I woke up and as I looked in the mirror, I noticed just how swollen my eyes were from crying...
" Oh great... now their gonna think Im a crack head... not just a heart patient."
I washed my face. and greeted the morning nurse. She was rather chipper and didn't blink twice at my swollen face. I asked her if it were ok to bring up my baby. He was 5 days old and I needed him.
She told me she would check. Things had been pretty busy last night. Apparently someone tried to pass away and the nurses spent 12 hours trying to keep him alive... 2 doors down from me.
Oh great! Im on the dying floor....
word spread fast though and all the nurses kept popping in to see me and perhaps catch a glimpse of a little baby.
" we never have young moms and babies on our floor."
Everyone was precious and moved mountains to make sure I had everything I needed for my Baby.
 |
| Finally holding Baby Caleb |
And hubby brought him up. I was calm and happy and surprisingly peaceful about everything.
When my nurse came back in, she mentioned she had had ppcm about 6 years ago... bad. She almost needed a transplant. But the Drs were wonderful and now she is fine. Off all meds and as healthy as a horse.
She was my angel.
She came in hour after hour and told me I would be fine. I would live to raise my children and live to see old age. She answered my questions... all of them.
She gave me the reassurance the Drs. wouldn't. And I was so thankful for her. I knew she was God-sent. God's way of letting me know, that even though this happened... He would see me thru... and send guidance along the way.
Later that afternoon, my cardiologist came back in to tell me my Ejection fraction was between 30% and 40%. He made it quite clear that when I first came in, he thought I would be much worse. Based on your bloodwork and your symptoms, we expected a much lower number...
Again, I knew God had intervened.
I was borderline moderate/severe heart failure.
I remember clapping and smiling at him because my numbers were better than we all expected...
And he thought I was crazy.
But I was happy. Anything below 25% would qualify me for a transplant... and I could keep my heart. I didn't need a ventilator, I woudn't require a heart pump...
I remained in the hospital for three long days. On blood pressure medicine, beta blockers and diuretics to remove ALL excess fluid. In a 24 hour period, I lost over 20 pounds. I also received one shot a day in my stomach of lovanox which was to prevent blood clots. Since my heart was pumping so poorly, blood clots were common. More meds helped my heart slow down, other meds helped my heart pump better. Sleeping pills at night because I was afraid to sleep... If I closed my eyes... would I wake up??
Finally it was time for me to go home.
 |
| signs my kids made me |
I couldn't wait. My symptoms were under control, I was taking enough medicines to choke a horse, and they felt that even though my heart was in the moderate/severe zone... they managed to pull me out of acute heart failure. I was holding steady. I was responding very well to all the treatment and they stopped the progression. Prayerfully all my heart could do was go up.
Every morning, I asked my doctor if I would get better... and every day He told me to not think that far ahead. Today was good. Lets be happy with today.
But my hope had returned and God had supplied the peace I needed to see me thru... and I was
HOPEFUL!
I remained under the close eye of my Dr, and was on strict orders of rest.
My recovery was slow and I have had a few set backs. My first Drs visit after being discharged brought on an anxiety attack... before I even left the house. I was afraid I would go back and they would re-admit me because my heart was failing again. The reality of my situation hit me hard that day. Thank God My favorite Italian, Michelle drove me and took notes as the Dr rattled off a list of instructions.
Anxiety attacks are common with PPCM patients... or for any heart patient. You only have 1... and organ that represents life. If it starts to fail....
Prayerfully, I have only had a handful of anxiety issues and heart related issues where I have had to call my Dr. I was a lucky one. Even my Cardiologist kept saying how happy and how surprised he was on how I recovered so well. Most women aren't so lucky. Their recovery takes years, and many complications along the way.
 |
| At the Dr. after JUST finding out the good news |
You see, the studies are old. Dr's are not aware of PPCM. This can happen to anyone at anytime...and up to 5 months after delivery. Most moms who are finally diagnosed are told they will die. Husbands are told to make arrangements. Lots of the Drs never had a patient with PPCM... but its real. And striking 1 woman in every 1500-3000 live births.
Looking back, I had PPCM with baby #3... and I went to the ER and told I was fine. It was stress. A common misdiagnosis. By the grace of God, I went on to have 3 more babies and didn't die... before it struck again....Mortality rates double with a subsequent pregnancy after having PPCM....
Also looking back, I was in heart failure the last month or 2 in pregnancy... but at the time I assumed it was just those 9 month struggles. In summertime... chasing after 6 kids...
For me, Im not allowed to have any more children. The risk would be too high. After surviving twice, the 3rd time won't be pretty.
But GOD had me in the palm of HIS hand for sure. Perhaps to tell others... to make Dr's aware that this is REAL and not so rare after all.
I was the first patient my Ob/Gyn had ever had with PPCM. You can't find this in the pregnancy books...
Not enough studies have been done.
Too many mothers are dying....
So please, share this blog post. Not to scare anyone, but to know the signs. My passion is to get PeriPartum Cardiomyopathy just as common as Gestational diabetes and Pre-eclamsia.
Will you join me in getting the word out...
Will you help save a mothers life??
XoXo
GiGi
Goosebumps!!!! I love you!!!!
ReplyDeleteThanks for sharing! God is good! So glad for His mercies and sparing you!
ReplyDeleteYou are so strong and beautiful inside and out. I am so happy to have found your blog. You seem so fun and crazy (in a good way). Cant wait to continue to read.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteThank you so much for sharing your story. My sister was told she had PPCM in December. Not knowing much about it, it seemed scary. Reading you story helped me to understand it and gave hope. Thank you so much.;)
ReplyDeleteThank you and prayers to your sister... how is she doing? There is HOPE and LIFE after PPCM!!!! Xoxo
DeleteWow! Thank you for sharing. I found out I had PPCM. I read your story and cried! After reading this I have hope for the 1st that I can get my life back! Again Thank you for sharing!
ReplyDeleteI have read your blog posts a few times now and every time I feel so grateful that you are still here for your sweet family!!I still have anxiety and have trouble talking about it and it's been almost 7 yrs now.If you ever want to just talk I'm here :)
ReplyDeleteAmy, you were one of my angels that God sent my way when I had no hope and was scared... when you told me you had PPCM too and recovered and were YEARS down the road from it, I knew God had sent you to tell me, I too would be in the same boat... THANK YOU Xoxo
DeleteWow, what a scary experience! I am so glad you are well and back with your family! Can you tell some more about the symptoms you had after your 3rd baby? What they were, and how long they lasted before resolving?
ReplyDeleteThanks for getting this information out, it's so important.
Pam
How scary, but how beautiful a picture of God's grace & love.
ReplyDeleteGigi, I have stumbled on your site and felt an instant connection to you. I too developed PPCM but in 2011. I have 10 children, and I homeschool. I invite you to join, www.myheartsisters.com which is a website, my husband and I developed to raise awareness about PPCM, and as a portal for all things PPCM related. My story is on there too. BTW, I am off meds and my heart function actually improved after coming off medication. There is a lot of hope and through our shared experiences and knowledge, the mountains can move.
ReplyDelete