New Member - Surgery Set For August 27th

[Lauren's_Dad]

Hello everyone (my apologies in advance for the length of this post!):

I was recently directed to this forum by a friend doing some research on my condition, and all I can say is that I wish I would have known about it sooner - it's truly an amazing group of people that contribute. The information I have read in the past few days has been invaluable.

I am a 38-year old male that was diagnosed with a biscuspid aortic valve almost four years ago, as well as an enlarged aortic root (4.5cm). At the time, my cardiologist thought that I probably had 5-10 years before I would need surgery. However, even though the size of the aortic root has been stable, based on a recent enlargement of the left ventricle (now 6.5cm diastolic), he has urged me to move forward with my surgery. As such, I am scheduled for surgery (valve replacement and perhaps some or all of the aortic root) on August 27 at the Wisconsin Heart Hospital. Since I have a low vonWillebrand factor (meaning that my blood doesn't clot well) and blood thinners are not a good option, my surgeon has suggested the Carpentier-Edwards Perimount Magna aortic valve (tissue). In the past few days, it's been very comforting to read the positive comments from members that have this valve.

I am hoping for a little advice on a few questions (some of which are not that important in the grand scheme of things, but I thought I'd ask anyway):

1. Any words of wisdom on explaining to my 4-year-old daughter that her daddy will be going to the hospital healthy (at least visually) and coming out looking like he's been hurt? She has always associated hospitals (and doctors) with helping people get better. I want to be upfront about the situation, but don't want to freak her out! Also, for those that have young children, did they visit you in the hospital? If so, how soon after surgery?

2. Knowing what you now know, what advice would you give someone heading into surgery in six weeks? There are so many things that one can focus on (personal health, family, friends, work, etc.) - how did you prioritize? And did you plan for the worst case scenario at all (write/rewrite your will, organize life insurance information, etc.)? I'm extremely optimistic by nature, but I don't want that optimism to prevent me from doing what is best for my family.

3. (Now for the relatively unimportant question in the grand scheme of things): One of my best friends is getting married 17 days after my surgery. Assuming that the surgery goes "normal" (if there is such a thing), what are the odds (in your estimation) that I will be able to attend? I would rather be realistic with this couple than provide an overly optimistic or pessimistic guess. The wedding is only a few minutes from my house, in case that's important.

Thank you in advance for any advice you provide, and I look forward to hearing from you. And I promise to submit my photo to the Tawdry Shirt forum!

Jason

 

[Karlynn]

Welcome Jason! First of all, your daughter is beautiful! My children were 5 and 7 when I had my surgery. We just told them that I was going in to get my heart fixed and that when I felt better I'd be able to do even more things with them because I would be feeling so much better.

It's my guess that you may be able to attend a bit of the wedding at least. I'm sure your friends would like to have you there for any length of time. Just judge by the way you feel, don't push past your lower end limit and let them know that you are hoping to be there, but don't know how long you'll be able to stick around.

People recover differently. At 17 days I probably would have been able to sit through the ceremony and that would have been it. (and since you won't be wearing yourself out having to do hair and makeup that would be a plus! )

 

[SHEEPDOG]

Glad You found us

Glad You found us

You are right, this is a great place. I found it when I was about 6 weeks pre-op and I am now 9 days post-op.
I am a 43 year old male so we aren't too far off.
I could see myself going to the ceremony OR a bit of the reception now. I don't know what another 8 days would do. I do know that I an an emotional TRAINWRECK at times. Started crying on the way home from hosp when I heard a song I seemed to especially like that day. (Frampton, DO YOU FEEL LIKE I DO?) I do get worn out LOTS faster than I expected to also so judge when you get there.
I had the luxury of having my 6 year old boy go visit his cousins 1 state away for the week I was in the hosp. It helped my wife LOTS. Use the neighbors and friends to help with her. I told Zachary i had to get my heart fixed cuz it was leaking and not working right. Your daughter will be OK with something along that line. It looks OK on the outside but it's sort of BROKEN on the inside. After it is fixed, it will be working right for a LONG time.

I would answer more but I gotta go rest for a while. It's been one of those days.
we will be praying for you.

Ps. Check out the regular chat session @ 5pm on Sundays.

 

[Jkm7]

Hi Jason,

Happy you found us but sorry for the reason.
I'm a planner and sometimes feel that if I do it/have it, I won't need it. You're a family man and obviously concerned about your little girl. I think it a good idea to update any and all legal documents such as will, durable power of attorney and Medical Proxy. This is quite standard for someone facing a serious surgery. The success rates for otherwise healthy young people like yourself are huge. You have every reason to expect to do fine.

As for the wedding..... Yes. I think the chances very good you will be able to attend your friends' wedding. Perhaps not stay for hours but enough to have the pleasure of sharing their happy event and for them to see you up and about. Don't overdo it. It isn't worth it. Have someone drive you with the understanding they will leave immediately when you tell them you are tired.

You will be tired, very tired. Your body won't have a reserve to draw on in those early weeks but if you have an uneventful, smooth recovery, you may be able to do more than you can now visualize. (I had my second OHS going on 5 months ago and was driving short, easy distances 2 1/2 weeks post op.) I have a Carpentier -Edwards Bovine in Mitral position and am very happy with my choice.

Come here with all your questions.
We understand.
Only someone who has walked the walk can fully know what you are now experiencing. The wait is the worst part!

 

[ejonbry]

Hi, It looks like you and I are in similar situations. I am 37yrs old, trying to explain to my 7yr old daughter and 11yr old son why I need to have my heart worked on. So far I dont have any definate answers except to tell them after I get home and get better, I can play with them better. My surgery isn't scheduled definately yet, just know it is the first part of Aug. Good luck with all of this.

Eric-Madison, Ga

 

[Phyllis]

Welcome, I can't add anything to all the good advice you have received so far, but I can and will put you on the calendar so that we can see you through this surgery and on into recovery. Best Wishes to you and your family.

 

[Marguerite53]

My 3 children were mostly in their 20's so I can't help you there. I would like to suggest, though, that she be given a list of helpful things to do when you return. If you give her a job, she will want to please her daddy and might not even wonder about why so much. Hurt is hurt. She'll want to help care for you.

Advice heading into surgery.... by all means, have your Advance Directive put together. Hopefully your Will is in order. For me, the best thing I did was take a deep breath and write a solid one-page letter to my husband and each of my children. Something they would have just in case. That was very much a relief to me to have done that. I, too, am a very optimistic person. I know that this helped me as I never lost sight of that in myself. Many of us turn to nature, too. Breathe in the sights, sounds, smells...the simple things. THose are things you can turn to when/if the fear starts to creep in. Just have an image of beauty to call upon. Of course you have the love in your family, and perhaps great faith....those will carry you through, too. And it's okay to have little meltdowns. These last few weeks before the surgery may challenge you. It's hard. Come here with anything you need!! That's why we're here. You'll be fine, though!!

Plan to go to the wedding. If you are lucky and everything goes well, you'll be there for a short time, so pick the time they want you there the most. Being IN the wedding could be tough. If you have some kind of complication, well, then you have some kind of complication and everyone will understand. Even with a textbook surgery, the thing that will bowl you over at 17 days post op is how tired you could get. It's like the medicines (which linger in your body for 6-12 months by the way) want to be SURE you don't over do things and they rear up and sap all your energy away, just when you started to feel like you had some. We are not talking pain here. You will be so amazed at how little pain you will be in (again, most of us are lucky that way), it's the exhaustion. When you have spent your day's energy, there is simply NO reserve to call upon to get through anything. You just have to give up and rest. Your healing body needs rest and sleep and it knows how to call for it!! Some of us have gone out on walks only to realize that there is no way to make it back home (jelly legs) and had to call to be "rescued".

Welcome to our wonderful community. Hope you keep posting.

Your daughter is adorable!!

Best wishes.

Marguerite

 

[Cooker]

Jason....welcome to the zoo....I am sure you will do fine....it is not as bad as you may think.

1. Any words of wisdom on explaining to my 4-year-old daughter that her daddy will be going to the hospital healthy (at least visually) and coming out looking like he's been hurt? She has always associated hospitals (and doctors) with helping people get better. I want to be upfront about the situation, but don't want to freak her out! Also, for those that have young children, did they visit you in the hospital? If so, how soon after surgery?

I did not have young children but my nieces were concerned....I just would say that daddy has to get his heart fixed and will be back soon......and you will be.

2. Knowing what you now know, what advice would you give someone heading into surgery in six weeks? There are so many things that one can focus on (personal health, family, friends, work, etc.) - how did you prioritize? And did you plan for the worst case scenario at all (write/rewrite your will, organize life insurance information, etc.)? I'm extremely optimistic by nature, but I don't want that optimism to prevent me from doing what is best for my family.

I just made sure my papers were in order and that my wife knew who to call for what if I was not home right away....try to eat healthy, rest well and enjoy yourself....it really is not as bad as you think....

3. (Now for the relatively unimportant question in the grand scheme of things): One of my best friends is getting married 17 days after my surgery. Assuming that the surgery goes "normal" (if there is such a thing), what are the odds (in your estimation) that I will be able to attend? I would rather be realistic with this couple than provide an overly optimistic or pessimistic guess. The wedding is only a few minutes from my house, in case that's important.

Yes, yes, yes....no reason to think you will not be able to attend....I came home on a Friday and attended a meeting Saturday......again it is not as bad as you might think (did I say that before?) and you will do / be fine.

 

[hall]

Welcome Jason. I did not have small children either. I think what the others have suggested is good. Especially having your daughter do things for you when you get home. As far as the wedding goes, I agree, you are going to be very tired quick. Have shower already done (because a shower would wear me out) and take a good nap and then plan to go to the wedding/reception for a short time. I am sure all will go well for you!

Deb

 

[Donnchadh]

I am 36 with BAV and same size anurysm. found 2 years ago though I only got told in January this year.
Both cardiologists I saw said to wait and see but I am too unfit to work.
Luckily I found a good surgeon and he advised surgery before I even asked.
He sugested a mechanical valve due to my age and I have to agree. I would hate to have more than one OHS if I can avoid it though I still worry about blood thinners affecting my QOL. But every case is unique.
My surgery is 31 July in a week and plan on attending a Ren fair 3 weeks after if I can.
I shall let you know how I fair *lol*

 

[WayneGM]

I can't add to the advice you've already received but welcome to VR. Glad you found us.

 

[Lauren's_Dad]

Thanks everyone!

Thanks everyone!

Just wanted to thank everyone for the warm welcome. No matter how many books or articles you read about valve replacement surgery, there is nothing that can take the place of the great advice provided by real people that have been down this road.

Karlynn, the approach that you used for explaining the surgery to your children makes a lot of sense. Being around for all of the great moments in my daughter's future is a great motivator for having the surgery.

Sheepdog, I already can be a bit of a trainwreck myself already - hardly ever cried before I had my daughter, now find myself occasionally crying tears of joy when a contestant hits their goal on that "Biggest Loser" weight loss show! Pathetic. Guess it just makes me happy to see people overcoming obstacles to succeed in life, or something like that. Not sure what my trigger song would be (probably not Frampton, perhaps some cheesy 80's hair band ballad), but I'll consider myself to be warned come wedding time.

Marguerite and Jkm7, I appreciate the description regarding the "lack of reserve energy" that you body goes through after surgery. I'll make sure that I always keep that in mind - don't want to be stranded far from home when going for a walk! Marguerite, I also like your idea of giving my daughter little jobs to do when I return. As you guessed, she loves being my "little helper" and this should be a great way to help get her through this.

Donnchadh and ejonbry, sounds like we're all in the same boat. I wish you both the best of luck, and I look forward to hearing more about your journeys in the coming weeks.

Cooker, I don't think I'll be planning any meetings the day after my return from the hospital! But it's great to hear nonetheless. Gives me hope that I might even be able to attend the game between my hometown Packers and the hated Cowboys 25 days after my surgery (American football - I've been waiting to see a Packers-Cowboys game for a very, very long time), but I'll see how the wedding goes first.

To everyone else that replied, I appreciate the great welcome and words of wisdom - thanks very much.

Jason

 

[ALCapshaw2]

With a BAV and an Aneurism, I urge you to read through the Bicuspid Aorta Valve and Connective Tissue Disease Forum.

NOT addressing your aneurism almost guarantees you will need future surgery to repair / replace your aorta at some future date.

Be sure to get a Chest CT or MRI to see if there are other aortic aneurisms. A standard ECHO is NOT adequate to determine that.

Be sure to ask your surgeon about his Experience doing Surgery of the Aorta, including the Aortic Arch. This is COMPLEX surgery that is beyond the 'comfort zone' of most Bypass and Valve Surgeons.

The common theme for Complex Surgeries is to find a surgeon with extensive experience (and success) doing the procedure YOU will need and the Valve you desire. The Top Surgeons will have records of 100 to 200 surgeries of your type per year.

There are specialists in Aortic Surgery, including Ross's favorite, Dr. McCarthy in Chicago (stolen from the Cleveland Clinic according to Ross). Dr. Sundt is the Aortic Specialist at The Mayo Clinic in Rochester, MN.

You can find links to posts about the above surgeons by going to the Blue Line at the Top of the Page, clicking on "Search" and typing in their last names.

Be sure to have a Will, Living Will (what to do 'in case'), Medical Power of Attorney, (discuss the ramifications of a Durable Power of Attorney). You may want to discuss setting up a Trust and/or other options to avoid probate with a Lawyer and/or Financial Advisor (such as Pay on Death and Transfer on Death options for Bank Accounts and Brokerage Accounts).

As others have stated, at 2 weeks Post-op, you will have very limited endurance and NO reserve energy. When it's gone, it's gone and you will need to rest and recharge.

Your 'Little Nurse' is a cutie! but you will NOT be able (allowed) to pick her up for several weeks as your sternum cannot support more than a 5 or 10 lb lifting/pushing/pulling limit for at least 6 weeks. It takes 12 weeks for your sternum to return to full strength.

Remember the Boy Scout Motto: Be Prepared

 

[REDJPD]

Hi & welcome. I'm 38 and had my op 4 weeks ago (aortic valve replaced with on-x valve) - and now feel great - walking plenty, driving and even back doing some work! I know the worry pre-surgery but once it's over you'll be surprised how quick your body recovers. If you are still pretty fit going into the op I think you will fly through recovery - you should be up walking after about 2 days and then it's a matter of getting the heart & lungs working today.- the biggest restriction is remembering it takes 2-3 months for sternum to heal.
Best of luck

 

[ponygirlmom]

Any words of wisdom on explaining to my 4-year-old daughter that her daddy will be going to the hospital healthy (at least visually) and coming out looking like he's been hurt?

Someone else had a good idea about the wording. I don't think she'd be allowed in the hospital, anyway, but I wouldn't take here there. You will look pretty scary, even to grownups!

I think the hardest for her to understand is that you won't be able to pick her up for months (until your sternum heals.)

2. Knowing what you now know, what advice would you give someone heading into surgery in six weeks?

I am SO glad I waited to have surgery while my daughter is in camp -- and she's a teen! I can't remember if you have more than the one kid. I suggest a nanny or teen relative to take your kid/s fun places and play with them at home and/or take them to school and do homework (if your schools start in August) while your wife takes care of you. And/or you may want relatives or a private duty nurse your first week out of the hospital so your wife can be with the kids.

Try sleeping in your recliner. If it's not all that, buy a new one.

 

[Lauren's_Dad]

I appreciate everyone's posts!

I appreciate everyone's posts!

ALCapshaw2, I will take your advice to heart. I am meeting with my surgeon on August 5th and will add your questions regarding Aortic Arch replacement to my list. I will also make some time to read through the Connective Tissue Disease forum.

REDJPD, great to hear that you're recovering well. I was pretty active until hearing that I would need the surgery a few months ago. As you and others have suggested, probably would be a good idea to continue some moderate form of exercise and go into the surgery as fit as possible.

ponygirlmom, thanks for the suggestions regarding my daughter. It will be tough not to see her during my time in the hospital, but hopefully I can have her take a vacation at Grandma's house or find some other fun place to go for a few days. My mother-in-law has already donated her recliner (which sits up high) and I will utilize it for sleeping if the bed isn't working.

As Tom Petty once said, "The waiting is the hardest part" (though I'm not sure that is true in this situation!), so I truly appreciate everyone's thoughts as my day draws near.

Thanks again,
Jason

 

[aussigal]

Welcome Jason...
Everyone has given you such great answers already!...My own boys were 10,13,15 when I had my OHS...One thing I wouldn't do is have the kids visit you in ICU...But once you get settled in the ward in a day or two after surgery you will be looking pretty normal again except for a big bandaid on your chest and a few wires and bits which will probably be able to hide under your hospital gown...I think it would be fine to have your little girl come visit you then....kids do worry about their parents when they're sick or in Hospital and to actually visit you and see that you are still alive and recovering is a good thing.

 

[Lisa in Katy]

I don't think you should ban your daughter from the hospital. That may scare her more. My children were 5 & 7 when I had my surgery. They couldn't come visit me in CCU, but as soon as I was on the floor, they came. At that point, the only thing they could see was my IV. They enjoyed riding on my bed and blowing the gloves up like balloons. They used the marker to sign my heart pillow. They put their ears on my back and listened to me tick. We took a walk around the hospital and went to see the new babies. They were old enough to understand that I'd had surgery, that I couldn't pick them up, and that they had to be careful because I was moving very slow and I was sore. They only stayed about an hour each day, but it was good for all of us to be able to see each other.

I was 36 when I had my surgery. I actually felt great after a couple of days. I rested a lot, but I also walked the floors of the hospital. I visited with the guy that monitored the telemetry units quite a bit in the middle of the night because sleep was something that came in spurts. They didn't send the Physical Therapist to see me because I was up and moving as soon as they moved me to the floor. I took a shower, got dressed, and put on makeup.

Good luck! I hope your recovery is uneventful.