Another Newbie with questions...

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Mom2izzy

Well-known member
Joined
Nov 24, 2011
Messages
420
Location
Michigan
I was diagnosed with MVP as a young child (about 7 I think). At some point...maybe even right from the beginning...I developed moderate to severe regurg. Over the years I've been monitored closely, but have always been asymptomatic and never required any medication. I'm 40 now (well I will be in less than 1 month) with a 3 year old daughter, and I've been referred to a cardiothorasic surgeon at the University of Michigan. I still don't have any symptoms...or maybe I do, but I've written them off as getting older or being tired after chasing a toddler around all day. I have had 2 or 3 fainting episodes over the last 5 years, but the doctors have never been able to link them to my valve problem or reproduce them. Since the most recent episode, I've been having bouts of dizziness or lightheadedness or just the feeling that something is "off". After being on an event monitor for 30 days, and still finding nothing, I attribute most of this to anxiety. Aside from that I am in pretty good health...BP on the low side, within the ideal weight range for my height, non-smoker (for about 4 years now), and I RARELY drink alcohol. My lifestyle is pretty sedentary...I have a desk job and my hobbies do not involve exercise, but I can walk a 5K.

I've gotten a lot of information from this website (thanks for that!), but have a few specific questions/concerns I'm wondering if others could give me some advice about or maybe others have had similar experiences...

As I said, I have a 3 year old daughter, and the most scary thing would be any risk of leaving her to grow up without a mother, but I'm trying to keep my thoughts positive and even with the best outcome, I have concerns about missing things with her or not being able to take care of her. The biggest thing is picking her up...she's at an age where she doesn't NEED to be carried, but sometime she wants to be and sometimes it just makes things easier. I'm afraid that by the time I can carry her again...she won't need to be carried anymore. Has anyone asymptomatic ever postponed surgery until a toddler is in school full time? For me this would be about 2 years. I'm also concerned about recovering in a house with an active 3 year old....

Is there anyone out there who can comment on making the "choice" to have OHS and can say either "I never should have..." or "I'm solo glad I did it?"

I have zero tolerance for most pain medications. Narcotic pain meds make me vomit which I can't imagine would feel good with an incision in your chest. If something makes most people "a little loopy," it probably makes me completely out of it. Even alcohol is like that for me. Anyone else with that issue?

I've seen a lot out there about choosing the right doctor, but if the first one you are referred to is a "world leader" in this type of surgery (Dr. Steven Bolling @ U of Mich) and pretty close to home, how much time should I really spend agonizing over that decision?

Well sorry to take up so much space with my first post ever. I could go on and on, but I don't want to turn everyone off instantly. Thanks for being here.

Lisa
 
Welcome Mom2izzy
Honestly i would not even consider taking a chance after having fainting spells. I would seek to have an echo done as soon as possible. As for picking your daughter up at the age of three, having the surgery would mean watching her grow up rather than having no mother. Don't want to scare you but 8 weeks of not picking her up for a lifetime of enjoying her growing up is a no brainer. I had my aorta valve replacced in September and found the surgery to be much ado about nothing the fear and anxiety of waiting and not knowing what to expcect was the hardest. It's been 8 weeks for me and still waiting for the roof to fall in but all my Doctors tell me don't waste my precious time because they fixed the problem. Though i am not a Doctor I can't tell anyone what to do but I'm sure someone on this wonderful site has much more wisdom and experience that i and am sure they can and will point you in the right direction. Good luck in whatever decision you make.
 
With those symptoms its sounds like you need to get this taken care of sooner than later. The body is amazing at masking symptoms for decades. If its true that you need this done its only a short time after it gets severe go into heart failure and die. I seriously only had months to live before having the surgery. Who knows maybe I could of lasted another year but with no quality of life. Point is there is a risk with any surgery and yes you may die but you may die in a car accident on the way to having the surgery. I know if I would of waited longer I would of died from heart failure within a year. As far as qaulity of life after surgery well for most its great even better then before. For me I can say im alive but still waiting for the better then before part, I have some medication and pacemaker stuff to work out still and I think my mind and emotions need to heal as well. I'm 4 months post op and still have a ways to go. Hope this helps you. Sorry for the long response, one thing is for sure, if you need the surgery you need it, its not a choice, you will die if you don't get it eventually.
 
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Thanks for the push/shove in the sooner rather than later direction. I'm still finding it tough to think of this as a big deal since I've been in wait and see mode for soooo long (33 years). I have echos every 3 to 6 months, and still no changes.
 
Hi Mom2izzy, you have found a very good site for information and support. I had also known of a "serious heart murmur" for many years prior to the surgery. Personally, I see no problem, in not surgeon shopping, if you are comfortable with your first choice. One of my surgeons was a "resident" who worked under the guidance of an experienced surgeon....and he then went on to be a Chief of Staff at Bayor University Hospital in Texas. Since you've known about your problem, and have been followed by doctors, you should have no problems and your daughter will grow up with a healthy, active mom.
 
Lisa:

I'm a newbie as well. Glad you found this place. It's been a great resource for me.

I had a heart murmur for as long as I can remember. It was only after switching primary doctors that she discovered something a little more serious. I was sent to a cardiologist, Dr Leslie Campbell here in SF and LOVE her! We've been monitoring things for 2 years. While I remain totally asymptomatic, it's now time for me to schedule surgery due to a horriblly calcified valve. Anyway - her 4 questions at every visit are:
1. Any chest pains?
2. Any shortness of breath?
3. Have you passed out?
4. Do you have fat ankles? (water retention)

These along with the condition of the valve would be grounds for hussling my butt over to the surgeon. SOOOOOOOOO....with your comment about passing out, you really need to seek out some additional advice.

As far as living with a child, have you rounded up your support group? Now's the perfect time to start talking with your friends and family. If you've never had major surgery, you'll need assistance.

That's just my take on things.

Dave
 
Thank you so much Dick and Dave! I'm going to need all the advice and support I can get...met with the surgeon today. Mitral valve repair surgery scheduled for February 28 with Dr. Bolling at the University of Michigan. I am waffling between relief and a feeling of "what did I just do?"
 
Mom2izzy said:
I am waffling between relief and a feeling of "what did I just do?"
Click to expand...

You would not be "normal" if you did not feel this way. Keep reading and researching.....you will find you are following a lot of people who have successfully gone thru this over the past 50 years. It is scary......but it is very doable. It is said that the waiting (for surgery) is the hardest part.
 
Mom2izzy said:
I have a 3 year old daughter, and the most scary thing would be any risk of leaving her to grow up without a mother, but I'm trying to keep my thoughts positive and even with the best outcome, I have concerns about missing things with her or not being able to take care of her. The biggest thing is picking her up...she's at an age where she doesn't NEED to be carried, but sometime she wants to be and sometimes it just makes things easier. I'm afraid that by the time I can carry her again...she won't need to be carried anymore. Has anyone asymptomatic ever postponed surgery until a toddler is in school full time? For me this would be about 2 years. I'm also concerned about recovering in a house with an active 3 year old....
Click to expand...

Hello and welcome Lisa. You know, there's really no perfect time for surgery, especially if you have kids, but for most, what seems at first to be an inopportune time usually works out just fine in the end. I had my surgery when my older daughter was 2 1/2 and my wife was in her third trimester with my younger daughter. Sure, I had a few of those same instinctual scary thoughts at first and considered the worst case domino effect of things going wrong. But then I took a few steps back, and reconsidered with a broader perspective and understanding of the situation. My surgical consult helped very much in this process, as did my own research.

It was kind of funny, with my wife's situation, my older daughter was not supposed to be picked up by either one of us! You know what, though, she listened when we explained why and adjusted just fine, never a problem. We had to make a few abrupt transitions but mostly they were things that needed to happen anyway, so it's all part of the process, and in some ways, it actually helped. I was amazed how she handled it all, but after thinking about it, I wasn't too surprised. I never let her see any worry or frustration on my face, so she was just following my lead. She got a kick out of helping out and taking care of me. To this day, she comes by with a pretend stethoscope every now and then to check on my heart "owee".

Now, by no means do I mean to imply everything will be perfectly normal, but you and your daughter should both adjust together just fine. And if you have family or friends to help keep out for a few weeks, that definitely helps too. Best wishes to you.
 
Lisa - now you have ME concerned. I'm meeting with the surgeon on the 13th. Honestly, I'd like to schedule this mid-Jan and just get 'er done and over with. Can I ask why your surgery isn't until the end of Feb? If you've had fainting spells, was this your choice to wait?
 
Dave Cottingham said:
Lisa - now you have ME concerned. I'm meeting with the surgeon on the 13th. Honestly, I'd like to schedule this mid-Jan and just get 'er done and over with. Can I ask why your surgery isn't until the end of Feb? If you've had fainting spells, was this your choice to wait?
Click to expand...

I don't know Lisa's reason, but If you choose to go to the leading, top ranked centers ( Like Uof M is for congenital heart centers) and/or leading surgeons, especially the "best" surgeons in the "best' centers often they are booked pretty far out for "elective" heart surgeries. FWIW almost every heart surgery is considerred "elective' Not only are they busy in the OR, since people travel from around the world for them to operate on them, but also often do the more complex cases, that take longer so can't do as many each day. Then usually they only operate (not including ER cases or transplant type things) 3-4 days a week, the 5th is usually for patients preop and post op appts, weekly conferences where they all discuss the patients, then they usually teach, go to different conferences vol for orgs that go around the world doing heart surgery for people who normally wouldn be able to have it,etc
This is also a tough time of year with holidays too.
It isn't unsual to wait a couple months once you get on their list.
 
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Thanks for all of the responses. Especially the "kid stuff." She is still my biggest concern...especially now that the rest is really out of my hands.

Dave - Lyn is correct, my surgeon is booked quite a bit in advance. They also have not found anything linking the passing out with the heart condition (at least not what they would expect to find that would cause them to jump on the surgery ASAP).
 
hi there! please message me with ANY questions!

i had my heart surgery when my girls were 18 months old, and 5 months old. i know all of your feelings! i had my surgery last year. please let me know how i can help you!
 
malibu82 said:
hi there! please message me with ANY questions!

i had my heart surgery when my girls were 18 months old, and 5 months old. i know all of your feelings! i had my surgery last year. please let me know how i can help you!
Click to expand...

Wow! You must be one tough cookie. I'm thoroughly impressed. Do you mind me asking how long it was before you were able to care for them on your own? Did the older one understand what was going on? Do you think having them around helped with your healing process? What I am really hoping for is that I will come out of this whole ordeal with more energy and stamina than I am going in with, and that will be a bonus for the whole family! Thanks!
-Lisa
 
malibu82 said:
hi there! please message me with ANY questions!

i had my heart surgery when my girls were 18 months old, and 5 months old. i know all of your feelings! i had my surgery last year. please let me know how i can help you!
Click to expand...




Why take the messages off the board for all to learn and be helped from? :confused:
To private message on such valuable information type thing deprives others from learning and benefiting. This is, afterall, a public forum, isn't it?

Not to say there aren't lots of reasons for PM's but I hope this isn't one.
Thanks.
 
Jimmyjames said:
Lisa, a great book to get is this it will help you through the process. You are young you will bounce back quickly, everything will work out. I think you will be amazed how well you will do.

http://www.heart-valve-surgery.com/about-adam-pick-author-heart-valve.php
Click to expand...

Some people, including me do NOT reccomend this book for several reasons, one being you can get the exact same info here or other places on the web often word for word, including pictures, and some of the info isn't that reliable. I would save your money or donate it to a WORTHY site or organization, that helps many like here.
 
Lynlw said:
Some people, including me do NOT reccomend this book for several reasons, one being you can get the exact same info here or other places on the web often word for word, including pictures, and some of the info isn't that reliable. I would save your money or donate it to a WORTHY site or organization, that helps many like here.
Click to expand...

I just thought this book eased my mind, not knowing anything about Heart Valve surgery, and when the news was dropped on my lap that I needed my valve replaced it help me to get through the process. Yes with new Techniques and Techonology changing all the time, yes it might not be 100% accurate, but for the most part I thought it was. It is just one person experience going through Heart Valve Surgery.
 
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