KateM
New member
Well...where to begin. First my husband found this forum and I have been reading it for days now. Everyone stories have inspired me and encouraged me that life isn't over because I have a craptastic aortic valve. Here I am 32 years old and I have gone through things that people haven't had to go through in a lifetime...but I am still here. Fighting. Sometimes it feels like I am barely hanging on but at the end of the day what other choice do we have then to breathe in breathe out and keep moving forward.
At the age of 5 my primary doctor heard a murmur and I was shortly thereafter diagnosed with a bicuspid aortic valve with stenosis and moderate regurgitation. I have had Echos yearly most of my life. 4 years ago we became pregnant with our first daughter who was tragically born premature and passed away shortly after birth...our sweet Zolle (as a side note...her preterm birth was not a result of my heart). About 25 minutes after I delivered her I became very light headed and dizzy and my blood pressure dropped in the 70's. BUT...I recovered shortly thereafter without any medical intervention. Then 2 years ago we were blessed with the birth of our second daughter...a full-term 8 pound 11 ounces and 22 inches long!! Our pregnancy went off without a hitch...I was high risk because of my hx of preterm labor and my heart valve. Post delivery was a bit rough. My pressure dropped rather low...I nearly passed out. They gave me lots of fluid and even a couple of doses of a vasopressor to increase my blood pressure. By day 2 I had edema up to my thighs and I was SOB walking up the stairs. Looking back I should have called the doctor but I had baby brain and I wasn't really thinking too much about me. Funny how that happens. Within 5-7 days I was feeling back to normal, the swelling was gone and I was breathing just fine.
So fast forward...I went to the cardiologist 2 weeks ago for a pre pregnancy checkup. We are planning to get pregnant this winter. Well...for the first time in 32 years my AS/AI have gotten worse. I am in tears just sitting here writing this. My gradient went from 40 to now 55. I can't remember my other numbers because I was so overwhelmed by the conversation. The cardiologist said that if I wanted to get pregnant to do it sooner before later and although my risk increased slightly I was still in the same risk as I was with my prior pregnancies. He also informed me that I will need my heart valve replaced in the next few years. How many...hard to say. Could be 2...could be 5. I always thought this would be in my 50-60's....with our children grown. NOT NOW. Not with our family so young.
I am so lost in it all. My husband hasn't said no to another child...but he hasn't said yes either. We told both sets of our parents and my parents feel strongly about me not having another child. I have told them that if we chose to move forward with that...I need support. Not to mention...with 1 or 2 children...either way I am facing a surgery in the next few years with a young family.
I am a Medical ICU nurse and I know just enough about open heart to totally freak me out. I know that waking up intubated, tied down, with a swan-gantz line, chest tubes, a throbbing chest with pacer wires and several IV drips does NOT sound like a walk in the park. I am so scared. I feel like so many choices have been taken from me because of this recent echo. I feel like my life is changing and I am angry about it. Although I am so blessed to have our daughter I am angry that my choice to have another child may not be a viable option.
How are young families dealing with this? How do I deal with this? sigh...needless to say...I am freaking out!!
At the age of 5 my primary doctor heard a murmur and I was shortly thereafter diagnosed with a bicuspid aortic valve with stenosis and moderate regurgitation. I have had Echos yearly most of my life. 4 years ago we became pregnant with our first daughter who was tragically born premature and passed away shortly after birth...our sweet Zolle (as a side note...her preterm birth was not a result of my heart). About 25 minutes after I delivered her I became very light headed and dizzy and my blood pressure dropped in the 70's. BUT...I recovered shortly thereafter without any medical intervention. Then 2 years ago we were blessed with the birth of our second daughter...a full-term 8 pound 11 ounces and 22 inches long!! Our pregnancy went off without a hitch...I was high risk because of my hx of preterm labor and my heart valve. Post delivery was a bit rough. My pressure dropped rather low...I nearly passed out. They gave me lots of fluid and even a couple of doses of a vasopressor to increase my blood pressure. By day 2 I had edema up to my thighs and I was SOB walking up the stairs. Looking back I should have called the doctor but I had baby brain and I wasn't really thinking too much about me. Funny how that happens. Within 5-7 days I was feeling back to normal, the swelling was gone and I was breathing just fine.
So fast forward...I went to the cardiologist 2 weeks ago for a pre pregnancy checkup. We are planning to get pregnant this winter. Well...for the first time in 32 years my AS/AI have gotten worse. I am in tears just sitting here writing this. My gradient went from 40 to now 55. I can't remember my other numbers because I was so overwhelmed by the conversation. The cardiologist said that if I wanted to get pregnant to do it sooner before later and although my risk increased slightly I was still in the same risk as I was with my prior pregnancies. He also informed me that I will need my heart valve replaced in the next few years. How many...hard to say. Could be 2...could be 5. I always thought this would be in my 50-60's....with our children grown. NOT NOW. Not with our family so young.
I am so lost in it all. My husband hasn't said no to another child...but he hasn't said yes either. We told both sets of our parents and my parents feel strongly about me not having another child. I have told them that if we chose to move forward with that...I need support. Not to mention...with 1 or 2 children...either way I am facing a surgery in the next few years with a young family.
I am a Medical ICU nurse and I know just enough about open heart to totally freak me out. I know that waking up intubated, tied down, with a swan-gantz line, chest tubes, a throbbing chest with pacer wires and several IV drips does NOT sound like a walk in the park. I am so scared. I feel like so many choices have been taken from me because of this recent echo. I feel like my life is changing and I am angry about it. Although I am so blessed to have our daughter I am angry that my choice to have another child may not be a viable option.
How are young families dealing with this? How do I deal with this? sigh...needless to say...I am freaking out!!