Talking to my kids

[karit]

I am less than 2 weeks away from having AVR. I was told I should start planning a time for it about 6 months ago, and I've been checking out this site pretty regularly since then. It has been very helpful, thank you! It's been a tough 6 months because I'm 36 and exercise 5-6 days a week. The week before I was told to stop exercising, I ran 10 miles to train for my first half marathon. It was really discouraging to watch my running friends run the half marathon and start training for another without me. Just sitting around waiting and planning has been extremely difficult on my psyche, so I am anxious to finally be done with it and move on! Sounds like I will be able to start running again relatively soon, true? But while that has been tough, the hardest part about this whole thing is I am a stay-at-home mom to 3 young kids (10, 7, 4). They know I have to get my heart fixed someday, but I haven't told them that the someday is now. My question is - how do you talk to your kids about surgery? I don't want to be emotional and I don't want them to be scared, but I really just want to give them great big hugs!! How have you guys talked to your kids about this? And what is recovery going to be like with my little ones? Thanks again for your help.

 

[marc_kowal]

When my surgery was done in March of 2012, my boys were 4 yrs old and 9 months old. Obviously I didn't have a conversation with my youngest (except I told him daddy loves him a lot), but I explained to my oldest that I had a boo-boo on my heart and I had to go into the hospital for some doctors to fix it and he wouldn't be able to see me for a few days. I didn't get into the details of what could happen to me, no sense in having him worry I thought. He seemed to understand and he had no problems with me being away for a few days, although he did miss me.
The biggest hurdle to overcome with recovery and kids is that you won't be able to pick them up for a while depending on what type of lifting restrictions the doctors give you, and you really won't have that type of energy for awhile. Try to get some help take care of the kids, so that you can take care of yourself and heal as best and as quick as possible.

 

[Kimv]

I am 36 also and was training for my first half marathon when I found out that I have a BAV that needs to be replaced. My surgery is next week. I have a 4 year old and a 10 month old. I just told my daughter a couple of days ago that my I had something wrong with my heart and that it was going to get fixed. My mom had surgery on her elbow in January so my daughter kind of already understood the concept of surgery and the hospital. I am much more concerned about how she is going to do with my limitations during recovery than worrying about my actual surgery - but your kids are older so they will probably feel differently. I am just hoping for a quick recovery so I can get back to my usual 'mom' routine as quick as possible. Hope a quick one for you too!

 

[T in YVR]

I'll be getting AVR in the next 2-3 months and my wife and I have been discussing this exact same thing...my son is 4 yrs old. Thus far we have not said too much to him. He overheard some conversations we had a few months ago and he really picked up on it right away. A couple of times right after this, he told our friend that runs his daycare that "he did not feel too well and that his heart was hurting"...so we are now very careful on what we say/when and have not said anything to him. He's kind of forgot about it now. We'll talk with him when the date gets close and its about to happen.

When the time comes for surgery, we're going to keep it fairly low key. As mentioned above, we'll likely talk about the doctors 'fixing a boo boo on my heart' and that I will be away for a few days....I think its important to talk like its nothing at all (which these days, perhaps it is!). My sister said we should also tell him that I'll be like a superhero with super strong heart and a really cool scar once its done ...so we may consider that too.

I think when the day comes for surgery it will undoubtedly be pretty emotional when I head off to the hospital, but that's on me. For him I want to be strong and keep it uneventful/like its no big deal.

Tony

 

[chaconne]

karit,

I'm currently father of 3 kids (one more on the way) and at the time of my OHS, 1.5 years ago, my kids were 7, 4 1/2 and 1 1/2. I prepared them by talking about it months ahead of time so that they were used to the idea before it came. You don't seem to have this option but I think you can put it in a low key way that kids understand. It may hit each kid differently. None of my kids seemed worried. I think it would have been harder if my wife had to undergo the surgery. She is a stay at home mom as well. Kids seem more attached to their mothers in earlier years.

Being in such good shape can make your recovery relatively easy. I was running, cycling and doing manual labor 2 days before my surgery. I was able to start running and cycling again in 2-3 months. You should be able to resume your exercise after OHS but you may slow down for a while, depending on what your heart situation is. I don't seem to have the stamina I used to, but this could be partly due to other lifestyle and age issues as well.

Best wishes to you!

 

[Sten Osis]

Re: Talking to my kids

It's a new lease on life. Stay positive and commit yourself to recovery and moving on. There might be speed bumps, but the direction is forward.

 

[Gail in Ca]

We told our then 2 1/2 yr old Mommy had to have her heart fixed. She came to the hospital with the family to drop me off the night before. She cried when she had to leave. She didn't see me for a week.
Someone must've told her I'd have a scar. The first thing she said to me when she saw me was she wanted to see my scar. She really seemed to be fine with it. I was a stay-at- home Mom. For my 2nd surgery, she was 14. She seemed more protective of me, wanting to be very close to me, with me in my bed, until she had to go home the night before my surgery. For my 3rd surgery, she asked it she could wait until I got home, because she remembered being traumatized from my 2nd surgery. We never knew, she had never told us. I think the older kids feel for us more, and become more worried than the younger ones.

 

[tom in MO]

I've had a number of surgeries over the years. I've always told my kids that I needed surgery when the dates were set. It has never been a problem, even when they were preschoolers. They get used to the idea real quick. We celebrate life with a good meal at a nice restuarant a few days before. The key thing is to be rational and explain it at an intellectual level so that all 3 can understand. Start simple, if they need more information, they will ask. Tell them you will have a scar, the procedure is routine, etc.

Be honest in the information and be honest in your feelings. Your children are smarter than you know and can tell when you are not honest and what they can invent in their minds is worse than the truth. It's OK to be a little emotional, because that is a normal true feeling.

With kids of your ages, unless you are very good at keeping secrets, they already know something is up. You may be suprised at how much the 10 yo knows.

 

[scott.eitman]

For me, it was harder to tell my bicycling buddies that I would not be able to ride with them than to discuss it with my kids.

Don't lie to the kids, but you do not have to tell them the whole truth either. Tell them all the good. Tell them that you will be going to the hospital for about a week. Tell them what to expect when you get home. Tell them all the things that you will be able to do with them when you get home. Don't tell them that you may not come home because that is a really, really, really small possibility. in other words, do all you can to stay positive with them. They do NOT need adult worries.

Come up with fun things for them to do while you are gone. Staying with grandparents for example.

For my first, I had a 9 month old, 3 and 5 year old. That handled it great.

 

[karit]

Thank you all for sharing your stories and advice. It is all so helpful and so nice not to feel alone in this. It's comforting to know others are going through or have been through the same. I guess its time to tell the littles. I know they know its coming. It's just so hard to talk about specifics with them as it gets closer, probably because my anxiety is rising and I don't want to admit how close it really is. Again, this waiting is awful - just wanting to be on the other side. So thanks again for your advice. It has been well-received and helped me feel a little bit braver.
And best of luck to those of you approaching your surgery. See you on the other side of this!

 

[Agian]

I feel more anxious in the mornings. It's the uncertainty that does it. If I was an independent agent I wouldn't be so worried, but I've got three kids to raise. So I have to be functional asap after the operation. I've told them I need a heart operation, but did it in a way that made it sound like it was no big deal.

Karit, have you decided on a valve?

 

[karit]

Agian,
My anxiety is worse at night. I can't remember the last time I slept through the night! I'm sorry you have to wake up to it.

Karit, have you decided on a valve?

This is a tough question. I think I have decided on a tissue valve. I don't have a great history with medications, so the idea of having to take any medication everyday scares me. Still, I keep going back and forth. My surgery is 10 days away and I am still not 100% sure.

Has any one else been this indecisive so close to surgery?

Again, have you decided? I was in the waiting room 18 years and was still unprepared for this decision!

 

[Agian]

I feel better by the evening and sleep OK, but if I wake up too early I lay in bed and catastrophise.

I've actually looked into the On-X (it's similar to the St Jude regent, but doesn't have any silicon in it). But, it threw me when the surgeon said: 'If it was me, I'd get a tissue valve.' He said the 'next one' will be through the groin. He said it will be 'very soon' that they do valves that way. The next time I spoke to him, he didn't sound that certain (but that was just me trying to read the tone of his voice). Groin insertion is definitely happening, the question is when. With the 'newer' tissue valves, there's an 80% chance that they'll still be there in fifteen years. One problem they found with TAVI in older patients is that it came with a risk of stroke. I suspect this may have to do with flicking bits of calcium off when splaying open the old calcified valve to insert the new one.

In answer to your question, I'm not sure, but I'm leaning towards mechanical. Warfarin may not be that big a deal.

PS With groin insertion, I think it will be important to replace the valve before it gets too calcified, to minimse the risk of stroke.

 

[tom in MO]

I have relatives on warfarin and doing home testing, so in my family, it's not unusual and not a problem. They take it for reasons other than a heart valve. I had 3 surgeries, 1 major, life-threatening intestinal problem, so I don't like surgeries. I knew at my age I'd have at least one reoperation if I lived to be 85yo. So I chose mechanical to avoid more surgery. My surgeon told me the exact opposite of Agian; he told me that I should not bank on the new surgical technique to be available or be appropriate for my valve when the time comes.

If you are of the scientifica bent, the article below was very helpful to me.

Prosthetic Heart Valves : Selection of the Optimal Prosthesis and Long-Term Management Philippe Pibarot and Jean G. Dumesnil Print ISSN: 0009-7322. Online ISSN: 1524-4539 Copyright © 2009 American Heart Association, Inc. All rights reserved. Circulation is published by the American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231 doi: 10.1161/CIRCULATIONAHA.108.778886
Circulation. 2009;119:1034-1048

 

[Just ASK]

My (at the time) 6 year old son had only one question: "Daddy, if you get a pig vlave, will you smell like bacon for the rest of your life?" BTW...he loves bacon. My wife and I found it best to do as many here have stated...tell the truth yet always the positive side of things. My son was more upset that he wouldn't see me for a week or longer, mmoreso than the fact that I was having OHS.