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KateM

New member
Joined
Oct 28, 2012
Messages
3
Location
Akron, Ohio
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!!
 

clay_from_nj

Well-known member
Joined
Oct 23, 2012
Messages
397
Location
Fort Lupton, Colorado, USA
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.
Don't panic. It might look really bad, but I think that most people get through OHS just fine. I'm 46 years old, no athlete, and just had my AVR six weeks ago. Surgery was very quick and uneventful, I don't even remember the dreaded ventilator, central line was really just another IV to me, chest tubes and pacer wire were really no big deal, and although I really wanted to get rid of the foley and pee for myself, it still wasn't all that bad. Didn't even really need any pain meds. Just don't put it off. I probably had my surgery later than I should have and am now hoping that the remodeling that has taken place will reverse enough that the rest of my life will be long and relatively normal. (Echo has already shown mas regression! Yay! More importantly, Damn, I feel great!) And, at 32 years old, I can tell you what every doctor and nurse involved in my case has told me, "You are SO young, you'll do just fine."

My daughter is just 10 years old, and I would much rather put her (and my wife) through dealing with my going through surgery than losing me prematurely. I'll be back to work next week and am glad to be looking forward to decades of being part of a happy, (relatively) normal family, rather than a much shorter period of uncertainty and suffering. Take your anger and frustration over the situation and channel it into determination to do what you can to make things better -- that's what I'm doing. (Now it's time to finish this glass of wine and get to bed, since I'm looking forward to at least an hour workout tomorrow, and I think I'll start those bicycle crunches too.)

Clay in Colorado, ATS Open Pivot AP, 9/21/12, St. Joseph's Hospital Denver, Dr. Mark Ammons
 

Mom2izzy

Well-known member
Joined
Nov 25, 2011
Messages
420
Location
Michigan
My story has a few similarities. I had mitral valve prolapse with regurgitation that worsened over the years. I was diagnosed as a young child and was 39 when they told me I would need surgery soon (preferably within months).

At that time my daughter was 3. I didn't plan on having another, so in that way we are different. It was still very hard to think about, with such a young child. One additional thing that added to my fear was that I am the "bread winner" in my house. My husband is mostly a stay at home dad, so I didn't know how he would provide for her if anything happened to me. Of course I can't get much life insurance because of my heart issues.

I had the surgery 8 months ago. My daughter (still 3 at the time) was at a good age for it. She understood that I would have "a big owie" for awhile, but she wasn't old enough to really worry about it. I can see where this could be rough on kids old enough to fully understand.

These surgeries that are so scary to us are routine for our surgeons. Going into the surgery as a young and healthy person...you shouldn't have any troubles.

All that scary medical stuff isn't really so bad...when I woke up I was so glad to have the surgery done that all of that other stuff didn't matter. I had a couple rough days in the hospital and some trouble with meds making me light headed at home, but my little girl kept my spirits and motivation to get better high.

8 weeks later, we were right back in our normal routine. The only difference it has made in our lives is that my daughter is a huge U of M fan and wants to be doctor when she grows up.
 

tgmorris

Member
Joined
Nov 1, 2012
Messages
20
Location
Indiana
I'd known I had a heart murmur since I was about 12 when it was diagnosed during Scouting. I had an echo when I was about 30 but had no restrictions and no knowledge I had a bicuspid valve. I had a physical many years ago but things still weren't too bad. I had a physical in February which started the whole ball rolling to an AVR less than 2 months ago. Fortunately for me I had top notch medical staffing all the way through from initially catching the severity to the cardiologist (which diagnosed it as acute aortic stenosis and said I'd had a small heart attack some time in the past, probably due to a piece of calcium breaking off of the valve) to the surgeon (who floored my wife when he said I could drop dead within 3 months) and nursing staff. Luckily, my pre surgery cardiac cath came back clean and I only needed the AVR.

After discussions with the surgeon I opted for a tissue valve and he'd make the final decision once things were opened up. Once everything was decided on things moved pretty quickly and I was placed on his next available open slot. The surgery went off without a hitch and was apparently quicker than normal, which I took as a good sign. I had a mini sternotomy and apparently wound up with one of the smallest incisions people had seen in a long time. Although it still hurt like heck when laying down, even when using the pillow, not to mention coughing or sneezing! After surgery the Dr. came in and said it was one of the worst valves he'd ever seen in his many years of doing this procedure as it was heavily calcified with a very large deposit on one side. The only other bad parts while in the hospital were removal of the foley tube and the chest tubes - both of which hurt a bit. Removal of the pacing wires and central line were non-issues.

Other than minor issues like severe post-op nausea to the anesthesia, dealing with AFib prior to release and a touch of Pericarditis things progressed nicely. I was released from the hospital 5 days later and to full activity w/no restriction by the surgeon 6 weeks after release. I did have to deal with some HBP after the post op meds ran out but that's now under control and will hopefully be weaned off the current meds in a few months as my BP was very good prior to the replacement. I'm currently in cardio rehab 3 days a week and also exercising on my own in between visits.

I know this doesn't address the pregnancy issue but it may help ease your anxiety over the surgery. So, at least in my case, I'm expecting to lead a completely normal life other than possibly needing the tissue valve replaced in 15-20 years. I'm somewhat hopeful that trans catheter AVR will be commonplace by then. :)
 

bahlvarun

Well-known member
Joined
May 29, 2009
Messages
113
Location
New Delhi, India
Sorry, Can't help, also being a nurse you are already aware of the complexities it carries. But my best wishes, hope you come out of it soon.

Have Faith in God, anything he does is for your own good and make you stronger and what you are. So, please don't worry, specially don't panic situations are there to solve not to get panicky and go hyper on them.
 

karla

Well-known member
Joined
Feb 13, 2012
Messages
177
Location
Johnstown, PA
KateM, I am also a nurse and have seen plenty of postop OHS patients. I had the same fears you have about the lines and drips and chest tubes and intubation and everything else that we have seen first hand. The thing that helped me was concentrating on all the many patients that had no problems and not the few who did. I can tell you that the actual experience with everything turned out to be MUCH better than I expected it to be. Since I understood the whys and the wherefores, it helped ease my fears. It was comforting to look at the monitors and know myself that things were good. Use your knowledge to your advantage. Kate, feel free to PM me if you like or we could talk on the phone if you like. All will be well. Honest!
Karla
 

Fundy

Well-known member
Joined
Dec 29, 2009
Messages
310
Location
Nova Scotia, Canada
I think most cardiologists and surgeons would say that if you chose a tissue valve, that having another child would be OK.

As far as maybe wondering about passing the troublesome genes on to a child who may have to face the same thing you are now, I doubt many people are angry with there parents for such a thing. I know my parents had no such knowledge, but if they did I wouldn't be angry about that's for sure.
 

KateM

New member
Joined
Oct 28, 2012
Messages
3
Location
Akron, Ohio
Everyone..thank you so much! It's such a crazy thing to be facing. I appreciate your honest, thoughtful responses. :)
 

JeffF

Well-known member
Joined
Oct 6, 2011
Messages
114
Location
Washington DC
Kate,

I am sorry that we are meeting under these circumstances, but I want you to know that things will be ok. I was diagnosed with a bad AV last fall at the age of 32 and had my replacement surgery last December. We found out about my condition 3 weeks after we found out that my wife was pregnant with our 2nd child. Needless to say last year was a crazy one. My 1st daughter had just turned 2 when I went in for surgery and she took it very well. The hardest part for me was not being able to pick her up for 8-10 weeks. The surgery and recovery were not as bad as I had imagined. I think the biggest thing I had on my side was youth. It was amazing to see the difference between myself and the other patients on the cardio floor 1 to 2 days after surgery. I was by far the youngest and was literally doing laps around the other patients as we walked around the floor.

If the doctors say 2-5 years before you need it replaced and that there is no added risk to your health I would say move forward with the pregnancy. Your daughter will be 4-7 years old then and she will be able to help more. I was blessed to have my parents and in-laws around to help my wife as she needed it. It really is only the first 4-8 weeks that are difficult. I was back to work in 6 weeks. Please let me know if you have any questions or want to talk.

Like I said before everything will be be fine.
 

AOS518

Member
Joined
Dec 30, 2012
Messages
21
Location
Phillipsburg, New Jersey
Kate,
i'm in a similar situation as you. i had my 1st OHS at 22 so i could get pregnant as my aortic stenosis would have prevented it. I chose a tissue valve. I had a successful pregnancy although it was rough with pre-term labor and bedrest for 6 weeks. My daughter was born at 37 weeks and is completely happy and healthy she has no heart issues. I had an echo and stress test in april 2012 and everything looked great...fast forward to november and i was having shortness of breath and and an echo showed pressure gradients that where extemely high. I am scheduled for OHS on jan. 17, 2013 and i have decided to get a mechanical valve. I also want more children as i am only 27. I know getting pregnant with a mechanical valve is dangerous so i have decided to investigate having my eggs frozen and using a gestational carrier. We go for our consult on wednesday to find out about the process, but from speaking with an IVF nurse and my cardiologist i have been told this can all be done after surgery once my INR is stable. I am hopeful that i can still have children even though i may not be able to carry them. I have been living with aortic stenosis since i was 10 months old and have had a lifetime of not being able to do things i've wanted and even being told i would never be able to have children. I have pushed forward and educated myself as much as i can about my condition and underwent surgery and had a child. i am now faced with another OHS but it will mean that i will be around for my daughter and future children and that i can have the best life possible. At times it is overwhelming and hard and you feel like no one understands. i also have parents that says no more children if my life is at risk but a desire to have more. It is a personal decision and only you can make it but no that there are options. I was told even now i can have another tissue valve and it will allow me to get pregnant again but it also means another OHS with 2 children. Waking up from the surgery itself wasnt as bad as expected. I remember the tubes and all the monitors but more importantly i remember the amazing nurses i had that helped me to not be scared and explained what was happening. The did whatever they could to make it easier and i was lucky that the nurse to patient ratio was 1:1 and the hospital i have surgery at has private rooms. I wish you the best with whatever decision you make and if you want to talk more, feel free to message me.

Sara
 

katm

Well-known member
Joined
Nov 15, 2012
Messages
79
Location
U OF M
It helped me to read all of the above posts. I am having surgery in six days, ugh! Scared beyond words right now. I keep wondering if I am going to be able to get myself to actually walk into the hospital. I lay in bed at night running my finger down my sternum thinking of the incision that they will have to make. I try not to alow myself to think so hard about it and I am so very grateful that this can be fixed but I am so frightened. I want so much to handle this with dignity for my family. I dont want my kids to know how scared I am but I am afraid my resolve is breaking down as each day passes. I so appreciate reading all your stories and thank you for sharing them with all us newbies. I know that I will get through this and be the stronger for it. I do chuckle at some of the insensitive comments made upon hearing of my surgery, my fav is "Oh wow, thats a major surgery", or "OMG, thats awful, good luck with that" and I love, "are you upset?" Theres always this almost audible sigh of relief when they hear that its congenital, lol. Its made me so much more sensitive with what I say to people.

WEll, If you remember think of me on January 7th!
 

katm

Well-known member
Joined
Nov 15, 2012
Messages
79
Location
U OF M
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!!

KateM
My husband is a doctor and I have been around the medical field all my life. Its a blessing and a curse. You hear and see the worse. I am sorry when I read stories from people going through this and they are so much younger than me. I understand your anger at how unfair it seems, all I can say keep trying to put it into perspective. This is a fixable problem that will allow you to live to a ripe old age. I remember feeling very angry but mostly scared. Keep reading this site, reading what others are going through will help you tremendously. I will have my surgery in 6 days, I'm scared but anixous to have it done and to get on with my life. good luck to you
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,086
Location
Queensland, OzTrayLeeYa
KateM
... I remember feeling very angry but mostly scared. Keep reading this site, reading what others are going through will help you tremendously. I will have my surgery in 6 days, I'm scared but anixous to have it done and to get on with my life. good luck to you
Wise words and spoken with strength of character.

Hear hear KateM and may your operation go smoothly (as is statistically likely) and your recovery be speedy and uncomplicated.

:)
 

TheGymGuy

Well-known member
Joined
Jan 3, 2011
Messages
978
Location
Rockville, MD
Kate,

I am sorry that we are meeting under these circumstances, but I want you to know that things will be ok. I was diagnosed with a bad AV last fall at the age of 32 and had my replacement surgery last December. We found out about my condition 3 weeks after we found out that my wife was pregnant with our 2nd child. Needless to say last year was a crazy one. My 1st daughter had just turned 2 when I went in for surgery and she took it very well. The hardest part for me was not being able to pick her up for 8-10 weeks. The surgery and recovery were not as bad as I had imagined. I think the biggest thing I had on my side was youth. It was amazing to see the difference between myself and the other patients on the cardio floor 1 to 2 days after surgery. I was by far the youngest and was literally doing laps around the other patients as we walked around the floor.

If the doctors say 2-5 years before you need it replaced and that there is no added risk to your health I would say move forward with the pregnancy. Your daughter will be 4-7 years old then and she will be able to help more. I was blessed to have my parents and in-laws around to help my wife as she needed it. It really is only the first 4-8 weeks that are difficult. I was back to work in 6 weeks. Please let me know if you have any questions or want to talk.

Like I said before everything will be be fine.
I hope I am not late with my response. First, what Jeff said is spot on. Actually, him and I spoke on the phone and he told me about surgery in high details which has really helped out. Now, I offer the same service he offered to me to anyone that wants to know more. I had my surgery at 33 and my daughter was only 10 months old at the time. It really helps to have one more person around to help with the baby or some little things around the house. Whenever you need the surgery you will be fine and will recover uneventfully like most of us here. The statistics for a young healthy woman are in your favor. Which valve are you going with? Also, we will be thinking about you on the 7th and sending lots of positive thoughts your way.

Let me know if you wanted to chat for a bit.
 

Oilman

Well-known member
Joined
Oct 17, 2012
Messages
128
Location
Red Deer, Alberta ,Canada
KateM,

Welcome to the form, I will be sending all good thoughts and prayers your way on the 7th. Hope you are managing better as each day passes. I know for me when it got down to the last couple days I was ready just to get it done, 5 weeks ago today. And like yourself I was very confident things would work out just as people said it would, just fine. I just remember the feeling of relief that it was done when I awoke, as for all the equipment, didn't pay too much attention. It all started to come off real soon, and recovery was starting. Take care.
 

Kitty

Member
Joined
Jul 17, 2012
Messages
24
Location
Adelaide, south Australia, australia
Hi,

I'm kinda in the same position as you, I'm 30 and having valve replacement surgery in February. I was diagnosed with a bav shortly after birth so I've know ild need surgery for awhile. 10 months ago after being strongly advised to do so by doctors I gave birth to our beautiful baby girl. I started having problems and showing signs if heart failure towards the end of my pregnancy and as a result had to have a planned cesearian because my doctor thought a natural birth would be too risky. So now we too are having to make the descission whether or not we want more kids (that's what it come down too for us really as I've been forbidden by my cardiologist to get pregnant before surgery)

My partner is concerned for my health and says the final descission is mine as a tissue valve at my age obviously means more surgery in the future (although my surgeon says a mechanical valve doesn't guarantee no more surgery)

My surgeon says its up to me and that while a mechanical valve is the more practical choice due to my age it's not necessarily the right choice for me.

So I definately understand what your going throu and please message me if you want someone to talk to. I think you need to do what feels right for you
 

enkaynj

Well-known member
Joined
Jun 5, 2011
Messages
213
Location
New Jersey, USA
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!!
Since you are an ICU nurse, you tend to be more afraid than the rest of us pedestrian folk. Believe me, sometimes ignorance is bliss. It is not as painful as you imagine it to be. For instance, I did not even realize I was intubated. When I came to I can not remember having any tube in my mouth. However, I did feel a lot of pain in my face as if someone had hit me with a sledge hammer. But that too passed away quickly once the painkillers were administered. Each person is different and with a bit of luck you won't feel a goshdarned thing.

Think about the good times that lie ahead after your surgery and you will do great. I am 18 months post op and I recently did a 10 Mile run which I couldn't even have dreamed off a few years ago. And the best part is that I ran slower towards the end not because I was out of breath but because my legs were hurting. Body aches never felt so good !!

You will do great. Pick a surgeon you trust and let yourself go.Don't overthink it.
All the best. Keep us posted Kate.
 

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