New, pregnant mom with BAVD and aneurysm--Questions

[kfay]

I haven't had the chance to call my friend today but I'll try her a little later. I wanted to post this article related to pregnancy and valve disease. http://www.medscape.com/viewarticle/445586

This is my cardiologist at the Mayo (Dr. Heidi Connolly) and I think she does alot of work in the area of pregnancy and valve diseases. If you decide to go to the Mayo, you may want to try and get an appointment with her.

Kim

 

[MNmom]

I saw Dr C too!

I saw Dr C too!

To kfay- I also had Dr Connelly as my cardiologist at Mayo- not this recent time but the first time when I was 20. I remember how good she was. Since this time it was a second opinion, I just went straight to the surgeon without getting a cardio at Mayo.

Yes it was a hassle for my family to all get a hotel in Rochester when we could go somewhere close to home, but the result was well worth it. Just remember to ask your surgeon how many of these surgeries he preforms yearly. That will help you make your decision, if surgery is what you end up needing.

 

[Kathleen]

I live in Shakopee MN and had all four heart surgeries here in the twin cities. At the time of the first two I had to drive from the St Cloud area and had small chldren also. Which group are you working with now?
Kathleen

 

[marky]

Welcome
I can't offer much on your situation, as mine was MV and not Aorta. But I will be watching closely to see how things are going for you and add you to my prayers.

 

[EireCara]

Hi, I just wanted to say ''welcome'' and good for you for demanding the ct scan.....I could give my gp and cardio a good 'smackin'' myself about now. (((((HUGS )))))) Best wishes.

 

[deogloria]

I agree with what everone is saying, and I would like to get a second opinion at Mayo. We're considering it. But the problem is that it's not just about convenience. Rochester is a two hour drive. If it were just me, or if I had some support, I would be happy to go. But we're really broke right now. I could probably swing the gas money to go to one surgical consultation, and maybe for my husband to drop me off and pick me up after surgery, but that's about it. Extra money for a hotel or anything else isn't possible. I also have no friends or family at all in this state. So I would be completely alone during my entire hospital stay, because my husband would have to stay with our kids. We have five children, all of them ages six and under. There is no one we trust to leave our kids with. I definitely agree I'd be better off at Mayo, and I do understand the seriousness of my condition, believe me. But the timing is really bad, and I can't just make these problems disappear, no matter how much I want to.

My mom did say she was considering coming out to stay with us if I have the surgery, but there's no guarantee on that. Even if she comes, my husband couldn't leave her with the kids that long. She just isn't the kind of mom that ever wants to babysit or pitch in. Actually, I almost dropped dead of shock when she said she's considering coming out, because I've begged her twice before to come out for other surgeries, and she refused. I guess the risk of death is high enough this time around for her to consider making the trip. But she'll only come if the surgery happens by the beginning of August, because my dad goes back to work the third week of August.

I did decide that I'm calling the cardio's office tomorrow to ask them what's going on with my test results. My symptoms are getting worse by the day--I'm short of breath now when I just stand still. I'm getting really concerned, and I don't think I can wait three weeks to hear back on what they think I should do. What if I wait, and they just end up taking the "wait and see" approach? My gut is telling me NOT to wait and see. And by then I'll have wasted a month and I'll have to start all over again getting a second opinion.

If I'm not able to go to Mayo for surgery, I will probably at least get a second opinion there.

Thanks everyone for your input. I'm glad to have found a place where I can get opinions from people who have "been there, done that."

KFAY- I'd love to read that article, but it just sent me to a sign in page.

 

[ALCapshaw2]

I thought about going to Mayo, but it would be very difficult and expensive to travel there for appointments, and I wouldn't be able to have anyone visit me because of the distance. It's a 2 1/2 hour drive, and my husband needs to stay with the kids. I've heard good things about Mayo, though.

Ingrid (MNmom) was in a similar situation as you. She wanted to stay local (Minneapolis) for her surgery (AVR with Aneurism) and scheduled surgery.

At the urging of several of the members of VR.com to see the Aortic Surgery Expert at Mayo (Dr. Sundt), she made an appointment for a second opinion. Once she met Dr. Sundt and compared his extensive experience with Aortic Surgery vs. her local surgeon (who does only a few such surgeries per year) it became obvious which surgeon was the Best Choice for her SURVIVAL.

Remember, this surgery is about Saving your Life, not having a 'room party' that is convenient for your friends and family.

At this point, you need to be focusing on finding the right Surgeon. There isn't much that Cardiologists can do for you once the diagnosis of BAV with aneurism has been made. It would be good for you to find a good Internal Medicine Physician to act as your Primary Care Physician if you don't already have one.

'AL Capshaw'

 

[Karlynn]

Take it a step at a time - but don't be afraid to be proactive. I'm sure the stress of all of this isn't helping your symptoms.

I had surgery 60 minutes away from my home. I had 2 small children at the time. Even with my parents coming up to help, I still really only had 1 visitor a day. The truth is - for much of the time spent in the hospital, you really don't have a desire for many visitors. And sometimes they come at the wrong times - when you just want to sleep.

Do you have a church group you can turn to? Or does a friend have a church group or other group that can be asked to pitch in some help? Right now, I think your next step is to get a doctor to contact Mayo and just go from there. I would hope that Mayo would help you make it happen if they felt you really needed their special care.

 

[Jkm7]

I so agree about the bit of having visitors being so unimportant. My first OHS, I asked my DH to be sure none of our friends came to Mass General to see me. It isn't I don't love them and need them as friends...... I didn't have the energy. Didn't want to even think about "Do I need lipstick"? This is about your life.

My second OHS, our best friends (he's a PCP and his wife) came, DH, of course, and my niece. That is all I wanted. Speaking only for myself, I need all my energy just getting from 12 noon to 1 P.M..... no energy left for visiting. I knew our PCP friends would have sense to stay briefly and not exhaust me. My niece knew from my first round how exhausted I was.

My suggestion is like everyone else's. Go where you can get the most excellent care possible and go by yourself, if necessary. You will be well taken care of and telephones work! (I was permitted to use my cell phone the second surgery. )

Good luck and let us know how things proceed for you.

 

[deogloria]

I finally got ahold of my cardiologist's office at the end of the day today. They're going to try to find a way to squeeze me in tomorrow or Wednesday. Apparently someone dropped the ball and did not add some of my symptoms, like the shortness of breath, to my chart after I called in last week. They were concerned when they found out about how I was feeling. I feel better about that, knowing they won't make me wait now.

AL - It's hardly a matter of having a "room party". I've never had any visitors for any of my surgeries. Like I said, I don't have family or friends nearby...or within 1000 miles. Spending a week or more in the hospital recovering from a huge surgery like this one with virtually no contact with my husband other than the occasional phone call (once I'm alert enough to use the phone) would be hard enough. But I truly believe a patient's emotional state can have a lot to do with recovery, and I'm concerned that I might get depressed being alone, and that could have an adverse affect on my health. And if that happens, telling myself not to be depressed isn't likely to work. Not to mention the fact that if I died in surgery and my husband wasn't at the hospital with me, he'd probably never get over it, even if he didn't have a choice. This really isn't something anyone could understand unless they know what my family situation is like. I am hoping I will find a way to work this out, but wanting and needing to work it out doesn't have anything to do with the reality of actually getting it worked out. I'll just have to pray that it somehow does.

Karlynn- As I said, I don't have any friends here. We do go to church, but I don't know anyone there very well, and I tried getting a sitter for my last c-section. No one was available. Everyone either has a large family full of small children themselves, or they have older children that they have to drive to activities. And that was only for half a day. In order for my husband to be there for my surgery, he'll need at least a full day of childcare.

I'll probably contact Mayo for a second opinion later this week, after I see my cardiologist.

 

[Natanni]

I finally got ahold of my cardiologist's office at the end of the day today. They're going to try to find a way to squeeze me in tomorrow or Wednesday. Apparently someone dropped the ball and did not add some of my symptoms, like the shortness of breath, to my chart after I called in last week. They were concerned when they found out about how I was feeling. I feel better about that, knowing they won't make me wait now.

AL - It's hardly a matter of having a "room party". I've never had any visitors for any of my surgeries. Like I said, I don't have family or friends nearby...or within 1000 miles. Spending a week or more in the hospital recovering from a huge surgery like this one with virtually no contact with my husband other than the occasional phone call (once I'm alert enough to use the phone) would be hard enough. But I truly believe a patient's emotional state can have a lot to do with recovery, and I'm concerned that I might get depressed being alone, and that could have an adverse affect on my health. And if that happens, telling myself not to be depressed isn't likely to work. Not to mention the fact that if I died in surgery and my husband wasn't at the hospital with me, he'd probably never get over it, even if he didn't have a choice. This really isn't something anyone could understand unless they know what my family situation is like. I am hoping I will find a way to work this out, but wanting and needing to work it out doesn't have anything to do with the reality of actually getting it worked out. I'll just have to pray that it somehow does.

Karlynn- As I said, I don't have any friends here. We do go to church, but I don't know anyone there very well, and I tried getting a sitter for my last c-section. No one was available. Everyone either has a large family full of small children themselves, or they have older children that they have to drive to activities. And that was only for half a day. In order for my husband to be there for my surgery, he'll need at least a full day of childcare.

I'll probably contact Mayo for a second opinion later this week, after I see my cardiologist.

It sounds like you have made some progress by getting in sooner with your current symptoms! Progress is excellent!

I can totally (well, not exactly with five kiddies, but two very busy ones, lol) understand where you are coming from. I could share stories, but they are not mine alone to tell. We had two work schedules, my call schedule, kids school and 2 families between ours and my hubands folks, all in a two year time frame. My father-in-law was our day care, and his transplanted heart began to fail 2 years after hubby's endocarditis and AVR. It would take us about an hour once we hit St Paul, and on to hwy 52 to check into the clinic. Please, keep that appointment for your 2nd opinion, and you will likey be assigned a nurse (Beth Eichhorn, Valve Nurse Specialist was ours)who will be a contact person for you. There may be ways to help you in your situation. I could be wrong, but with my beloved father-in-law, the Mayo worked very hard to insure he would receive care and that his family had some options for help. They try had to keep families intact and involved. I was given a cot to sleep next to my hubby after surgery (first night out of ICU). I slept in his room every night, but I am nurse and this is certainly not for everyone, but this is just an example of how they do try The same was true when he had endocarditis a few months prior. During the surgery, the waiting rooms are extremely large with volunteers always circulating. There were many children, including mine, hanging out in the waiting room while my husband had his AVR. Maybe this could be an option, for your kids, hubby and Mom all to be down with you for those couple of days.

Good luck with your upcoming appointments and please keep us informed! Again, wishing ya all the best. Let me know if there could be anything we could do to help

 

[deogloria]

Edit: I'm editing this particular reply (okay, rant), which I posted in response to a rude comment someone made, because Ross the moderator was kind enough to delete it. So no more need for my rant! Thanks Ross, for deleting that, and for saving the rest of my thread!

 

[cday]

As a mother of five children I am going to politely ignore Adam's question. I suggest you do the same.

Please talk to your someone in your church! Don't assume that just because they have large families or busy kids that they will not be more than willing to help you! Maybe one family would take the girls and one the boys. Maybe your mom would be able to watch 1 or 2 and church members the others.

You may get to be very close to some of them because of this. You are denying them an opportunity to minister to you and your family. Let them help you.

Call the pastor or priest or women's minister or the church secretary!

There is only one way to solve this -- that is by taking action -- call them!

 

[cday]

You must have been replying at the same time I was. Didn't see your response before my post! Ha!