sharing worries

[EloiseJ]

I am quite new to this site and this is my first post, so I will introduce myself I am 30 yrs old with two young children. I was diagnosed with a dilated aortic root and 'leaky' aortic valve in December 2010. I'm scheduled for Bentall's procedure next week, and will be having a mechanical valve. The surgeon gave me very little choice, because of my age and the fact that I already have two children. I also don't want to be facing surgery again in my forties.

As my surgery is now only just over a week away I have been doing more and more reading mainly very late at night while my husband and children are asleep. I am putting on a very happy 'everything will be fine' face during the day, but I am actually very worried and scared. I have no one to talk to about my fears, as I don't want to upset my husband, friends and parents. I am not worried about my surgery in terms of my aorta and valve being 'fixed' I trust my surgeon and believe he will do an excellent job. I am terrified of having a stroke, and ending up in a nursing home. I do not want my children to have to face that. I am scared of a stroke during the surgery and in the years and years that I will be on warfarin. I have not said this to anyone and I feel better putting it out there to people who will potentially understand.

I am also upset that I will not be able to look after my children, my son will be starting kindy the week after my surgery and I won't be there. I don't know how long it be will until I will be left alone just to play and look after them as my family and husband are even now pulling them away from me and telling them especially my nearly 2 year old daughter that mum has a bad heart and she won't be able to pick you up for awhile. (they have the best intentions and are doing it out of love for me)

Has anyone else experienced this surgery and also had young children? How did you find you coped? Did your children become alienated to you?

Sorry for the long post, and thank you if you have read this far.

Eloise

 

[Allisoninoz]

Hi Eloise,
Where in Australia are you?
I'm 42 and have an 8yo daughter and am having aortic valve replacement surgery on 22 February.
Look at my profile and we'll talk ...
Allison

 

[Philip B]

Worries?

Worries?

Hi Eloise,

Welcome! I'm glad you have your surgery scheduled and are taking things day-by-day as it approaches. I think most of us have faced the same kind of fears and uncertainties you are dealing with.

When I had my AVR surgery back in 2007, I didn't have two kids to take care of... I had over 150. I was a high school principal. You might think that's not the same, but I'd always approached my work with students on an highly personal basis. My work with my students probably helped me as I approached surgery. Focusing on my kids helped keep my mind off my problems. Working with kids undoubtedly helped me with my recovery. I only took five days off work for my surgery. Sure, that was a quick return to work and most members here didn't experience the kind of quick recovery I experienced.

You might be surprised how quickly you may recover. Approach your situation with a positive attitude. Set recovery goals after conferring with your surgeon and cardiologist. Monitor your progress and make adjustments as necessary. This kind of surgery is about getting a problem fixed so you can get on with your life.

If you've monitored dialogue on this site, you've undoubtedly noticed lots of discussion concerning coumadin. Experiences vary, but I don't think it's an exaggeration to note that the majority of our members using coumadin haven't experienced major problems. Speaking personally, coumadin management has been really easy for me. I'm afraid misconceptions about coumadin are abundant. Don't let the often emotional dialogue people from opposite sides of the debate freak you out. You've made a decision about valve choice and moving forward with confidence will do more for you than any kind of self-doubt at this point.

Experiences with family, spouses in particular, differ among members as well. Relationships tend to vary wildly. My wife was a real "rock" as I faced surgery and recovered. It's important to be able to talk to someone about your worries, fears and concerns. You might not want to worry your spouse with your concerns, but isn't that what spouses are for?

The odds of you having a successful outcome with your surgery are pretty darn good. It's easy to find yourself being pulled to the darkside because any kind of OHS is a big deal. Put some real effort in focusing upon positive outcomes.

Our purpose for being here is to provide support. We can help!

-Philip

 

[OldManEmu]

Welcome aboard Eloise.
I can't help you regarding the emotional side of handling the children; however it is a good idea that the children realise that you will not be able to pick them up for some time after you come home from hospital and that they will not be able to climb on you or tug your arms.
I hope your husband is supportive, rather than just going into denial about the situation. You may find it helpful to discuss some of your concerns with him at a quite time when the children are not around.
I was of the opinion that a stroke was the worse possible outcome surgery, yet doing nothing is not an option as this will only guarantee a bad outcome in the long term, this valve problem can only be corrected by surgery.
You should be out of hospital inside a week so you may make this first day of kinda.

 

[Duffey]

Hi Eloise.
I understand your reluctance to discuss this with family. We don't want to upset our families. This is a good place to talk!
I had a young granddaughter at the time of my replacement so I have some experience with what you're facing. All I can say is that all went well and now, five and a half years out, she has no recollection of my surgery and we are closer than ever.
Best wishes and try to get some sleep!

 

[neil]

hi elouise, welcome aboard, am sure theres many on here who went through what your going through,but it really suprised me how brill my family was after the op,if anything it brought us all closer, one more thing......YOU WILL BE JUST FINE..........

 

[ALCapshaw2]

Welcome Aboard Eloise!

I'm glad you found a place where you can express your concerns and find support from people who have 'Been There, Done That'.

Fortunately, Heart Surgery has evolved into a Highly Refined Art with exceptionally Good Rates of Success. In the USA, the national averages are 1% risk of mortality and 1% risk of morbidity for First Time Surgeries in patients under age 65 versus almost certain demise if left untreated. In the hands of very experienced Valve and Aorta Surgeons, those numbers are even better.

Try not to think about the short term restrictions you will have as your sternum heals but focus on being Alive and Well to raise your children to adulthood.

You may find more insight in the Significant Others Fourm.

Hopefully you will come to a feeling of Peace as you accept your fate and take that necessary 'leap of faith'.

Best Wishes,

'AL Capshaw'

 

[Jkm7]

Your worries are so normal and expected. I can't imagine anyone facing open heart surgery who doesn't have all those concerns.
We have a number of young moms and dads here who also worried so about their young children while the family faced this surgery and happily, it is such a hugely successful surgery that there are a rare some (mostly those with other medical conditions) who don't come through this surgery fine. Sure there may be a bump in your recovery but most of us have one thing or another which is well handled by these hugely experienced and well trained heart surgery teams. I had 2 OHS in four years and can honestly state I barely had a problem at all during recovery.

You already know you simply cannot lift anothing over 10 pounds (or whatever specific instructions you are given) and gradually a little more until your sternum is healed. It is not pleasant if you overdo it and impede that healing. You would probably have problems ever after if it doesn't heal well the first time through.

If you feel up to it, it probably would be helpful to not only you but also your husband to have a frank conversation when the children aren't around. It most likely would be good for both of you.

We're here to help in any possible way. Only those of us who have 'walked the walk' can truly understand. Others care and love and want to understand but it is us who have to undergo the surgery and the emotions and anxiety that accompanies it. Some have found it helpful to ask their doctors for medications to help them through the wait.

 

[MaggieB]

Eloise-

I totally understand how you are feeling. I am 45 and Allison and I both are moms with kids facing this valve replacement.

Let's be friends and talk about it all. My kids are 9 and 6. I just tell them what they need to know in language they can understand. "Mom's heart needs to be fixed and I'm going to be fine." Just keep it age appropriate and short and sweet, reassuring.

You are not alone!
Hang in there....
Maggie

 

[nngbwh]

Hi Eloise, welcome aboard. It is normal being scared. We all been there. Hang in there and keep us posted.

 

[Superbob]

Hi Eloise,

Welcome to the forum. Worrying is absolutely normal when you're facing this. I, too, had to have a Bentall's for an enlarged aortic root and very leaky valve, and the first time my cardiologist told me what would have to be done, I thought no way. However, the success rate for these surgeries is very high. I had my Bentall's at the age of 63.

Of course we want to inform our family as much as we can, but there are times when you just need to vent -- and this is a good place to do it. My children are grown, but I have grandchildren, and it was helpful for them to know it would be a while before I could lift them and play sports with them. But I can now! -- and you will be able to do so, too, as a loving mom with your kids, after you get this done and after your docs clear you for gradually resuming daily activities.

So a hearty welcome to you, and we look forward to hearing more from you.

 

[NealR]

Hello Eloise,

I understand. I worried for 3 months, right up to surgery. Now, 14 months later, I still do. Go figure.

Guess it just comes down to faith, and faith means as much as believing in yourself, as much as anyone else. You'll make it. Hard as it may be, try to find joy and happiness in all the little, and big things around you. Your family, friends, neighbors. Even here, the strangers on this forum. You will realize how much you have going for you, pulling for you, and wishing you well. My children coped well, in fact my daughter shoveled the snow today,,,,just for me, so I didn't have to. Think ahead, think about getting stronger. Set goals, timetables. Figure when, then how. Include your children in this process. They may surprise you.

Will keep tabs, and wishing you the very best.

 

[Greg a]

Welcome to our OHS family ....always happy to share the load and the stress

 

[Duff Man]

I'm "in the waiting room" but I can tell you that stroke is one of my big concerns when i think about surgery too... but I understand it's quite uncommon for patients under 60ish. It would be a freak thing, as I understand it.

I might recommend not reading too much more until after you're on the road to recovery. When you talk about reading about it on the web, it sounds really familiar. I can literally make myself sick if I read enough about AVR and the bentall procedure.

 

[EloiseJ]

Thank you very much for all the replies. I have felt so much better just writing down my worries, it feels like I don't need to keep them in my head anymore if that makes sense. I think that I will be worried about a stroke until I actually wake up from the surgery but it is not worrying me to the point that I can't enjoy this last week. I am just so grateful that I was diagnosed in the first place, and to the medical community for developing and refining this surgery in the first place!

It is a also a weight off my mind that so many others have been through this, with the same concerns and made good recoveries it makes me feel a lot less alone. I feel that the decision has been made it will happen, I have no choice if I want to be there for my kids in the future, and I will have a mechanical valve and learn to live on warfarin as so many others have done.

I wish everyone well with their wait, I feel relieved that mine will be over next week. I can't imagine how it would feel to live with this worry for years.

 

[EloiseJ]

Duff man - I made the huge mistake of seeing a little bit of the Bentall's procedure on Youtube and reading the statistics for stroke and Bentall's procedure over the long term in various medical journals. Never again. I know what you mean about feeling sick, and I have decided not to type Bentall's or Stroke into google again!

 

[Mentu]

Eloise, perhaps we can repeat things too many times but I, also, would encourage you to think of the long term benefits instead of the short term inconveniences. Yes, you will live with some limitations for a few weeks but the trade off is that you will live a normal life and have the same chance as everyone else to be with your children and grandchildren. That is worth a short period of needing to care for yourself. You owe it to yourself to carefully manage your recovery and that most certainly does include observing the lifting and exercise limits while your body heals so that you have the best long term experience. It will do no one any good for you to hurt yourself and prolong your recovery. Plan your recovery and do everything you can to heal properly so you can look forward to your future again.

That said, you may be surprised at your progress after surgery. I had no problem hugging my young niece as she sat on my lap the week after surgery. No, I couldn't pick her up but I could hold her and reassure her that my heart had been fixed and that I now felt much better. As it turned out, her real concern was how the surgeon got the new piece inside so I showed her the incision. Her face brightened as I told her it was like a pocket that the Doctor opened, put the new piece inside and closed. Her response was that of a typical 4 year old "I like pockets! Would you like to see what I have in my pocket?"

You may be a little sad at not going to school with your son when he begins kindergarten but that is not going to leave him traumatized. He will enjoy telling you about his adventure all the more.

Right now, you are thinking about all the things that can go wrong. I would urge you to consciously spend some time each day visualizing your new life doing all the things you want to do. Eloise, surgery is not the bad thing that is happening to you, rather, it is your doorway into a healthy future. It is likely that it will go better than you ever imagine so try not to dwell only on the bad things that can happen. Yes, a stroke is possible for any of us but not very likely as long as we follow our new routines. Read the experiences here in VR of those using Anticoagulation Therapy. You will find that it is very manageable and is used today by millions of people who live better happier lives. Things are going to be OK, Eloise.

Larry

 

[Duff Man]

Duff man - I made the huge mistake of seeing a little bit of the Bentall's procedure on Youtube and reading the statistics for stroke and Bentall's procedure over the long term in various medical journals. Never again. I know what you mean about feeling sick, and I have decided not to type Bentall's or Stroke into google again!

just know that alot of the studies out there are quite dated, and the statistics have improved quite a bit since the procedure's beginnings. Sometimes a study will lump a massive number of procedures over the course of one or two decades and produce aggregate stats from it... I don't feel like those numbers are fair since we're constantly learning and improving techniques that foster better stats.

 

[clement]

Hi Eloise,

I was diagnosed late last October 2010 and had surgery 7 days ago.

Facing my possible own mortality for the 1st time in life at age 43 was unbelievably difficult.

What helped me:
- Hypnotherapy sessions with listening daily of the recordings
- Counseling sessions to talk about my fears.

I would recommend to get help from professionals (psychologues, ...). Because dealing with it by yourself is freaking too hard. And friends/relatives cannot really help.


All the best,
Clement