New Member--Spouse is Patient

[Carolyn]

It is hard for me to believe that two weeks ago, my husband and I had no idea we'd be facing major heart surgery after Christmas. He was born with a bicuspid aortic valve which was detected by his doctor many years ago. The doctor kept an eye on things, sending Kel to a heart specialist about three years ago. It was then that we learned that eventually, Kel would have to have the heart valve replaced. Thereafter, every six months Kel did the necessary tests to monitor the condition. Otherwise, life went on, and we didn't think too hard about the future. Surgery seemed decades away. Two weeks ago, the six month checkup revealed an aortic stem aneurism! Last Thursday, after an angiogram, it was decided that though the heart valve didn't necessarily need replacing yet, the aneurism had to be fixed, so both will be repaired at once.

Our surgeon met with us that day. I still can feel the awful tidal wave of disbelief that NOW was the time, and it was much, much more serious than we expected. That night we told the kids (almost 10 and 12.5) that their dad had to have major surgery and not only that, it looked like major changes were on the way. They took it well because we were prepared and had all the facts as we knew them then. Since then we've learned just how lucky we are that we were doing the twice yearly tests for the heart valve! I don't want to even think about what would have happened had the aneurism gone on undetected.

Kel's surgery is scheduled for January 15, 2002. There is so much to learn. I stumbled across (on the recipes thread no less!) a link to a gripping but oddly comforting website showing exactly what equipment and technique will be used, at least as far as the heart valve replacement itself is concerned.

I am still shocky over this, as is Kel, as we learn more and more about how this will affect his life and ours. Some of it ultimately will be good--looks like I'll get to learn how to cook new things! Kel is only 37, and otherwise healthy, plays tennis regularly (though the doctor has put a stop to that from now until he is completely healed), and has no symptoms that would suggest all the trouble brewing beneath his sternum. We are in the midst of redoing our house and laying down new flooring--guess we'll be walking on cement for awhile!

Sorry to go on for so long. I'm glad I found this forum as already I feel a bit more informed than I was before.

Carolyn

 

[Nancy]

Welcome, Carolyn

Welcome, Carolyn

You'll love this site. It's very friendly and Just what you need to help you through this difficult period in your life. Everyone here understands what you are going through.

My husband is the patient also. He has had 3 open heart surgeries, 2 lung surgeries and has a pacemaker. He's 70 years old and wasn't supposed to live past 50. So, you see, valve surgery and the other repairs they will be doing to Kel's heart are indeed life saving.

Always keep that in mind, The surgery will give him a normal life span and a much healthier life.

So he's on the road to good health. Cheers!

 

[sylviayasgur]

hi carolyn!
welcome to this site. my husband, joey, is also the patient here. the members on this forum have been a godsend for me and we are all here to listen, help and hold your hand through this scary time.
ask as much or as little as you'd like, we are here for you.
have you looked into different valve options yet? have you decided? there is a great thread on this site in small (or heart talk) that was started by peter easton back in august '01 entitled "making the choice". in it he discusses many options and i found it to be extremely informative and helpful in making our valve decision. my husband also had an aortic stem aneurism.
kelly is young, so this lifesaving surgery should be a piece of cake. the surgeons today do this type of procedure very routinely; nancy is right.
please keep us posted as to choices, etc. you may make. people here have so much to offer. (joey and i actually called and chatted with mara who had her ross procedure done before joey had his done.... asked questions, etc.)
good luck and God bless,
sylvia

 

[RobThatsMe]

Hi Carolyn,

Welcome to the site. I hope you feel free to ask any questions you may have, vent, whatever you feel. We have been through it, and will be happy to assist.

I would recommend that you and you husband read some of our personal stories on the home page to VR.com.

I do not think you will have any real major lifestyle changes after surgery. We tend to bounce back for the most part.

I had an ascending aortic dissection that tore into my valve. I never knew I had it until it blew. Then emergency surgery. All this happened on 3/23/00 and today I am just as active as before.

I would also reccommend another site that is for folks with aneurysms and dissections. The site address is:

http://www.westga.edu/~wmaples/aneurysm.html


There is more information here on ValveReplacement.com from the patient prospective than you will ever obtain elsewhere! I hope you and your husband spend time reading through the threads. The information is invaluable.

Welcome again to the site,

Rob

 

[hensylee]

Hi Carolyn - come on in and read awhile and then stick with us. Hank set up this site after is own valve replacement because he had not been able to find anything to help him prior to his surgery. He intended for nobody else to be in his shoes. Aren't we all lucky. I, incidentally, did not have valve replacement, but had quad bypass, but they go in through the sternum and that part of the surgery I can certainly relate to. You have found a wealth of information available to you from today til.......

As Rob says, ask anything, express your worries - whatever you want to know even if you think it isn't important - we will all answer and from now til surgery we will support you with answers, remarks and prayers as you walk toward the mountain that you are climbing.

You, by the way, are now going through the worst part; the waiting. It is so unnerving to all concerned, especially you and Kel, but everybody here will tell you that once it's over and done, your lives will begin again and if Kel is like the biggest part of our members, he will be well on his way back to GOOD health and you will return to a normal life. Very few real changes. God bless

 

[Carolyn]

I hope I am doing this right. (replying)

I just got home from work and found all these messages! Thanks for the welcome. I plan to do alot of reading this weekend, and checking the other places mentioned.

We asked for options and were told with what Kel has, there are none. This is what we have to do. I actually found that helpful--the decision was made, we set the date, and now we are trying to make sure we get done all that has to be done. I'm just glad they okayed waiting until after the holidays, but it makes me nervous, too. I want this over with!

I'll write back more later--my son is having a friend sleep over tonight and I need to prepare. I'll be back on later though to read more and probably ask more questions--I have a lot about the post-operative stuff, too!

Carolyn

 

[ShanaleT]

Hi Carolyn. I am 26 and facing the same surgery that your husband is on Thursday. I was originally scheduled for Jan 3, but I am having to move it up due to a change in my employer's insurance. It would not be completely covered under the new plan. I, like you guys, have done alot of research since I found out about this. I was not aware anything was wrong other than being tired alot and having shortness of breath. I attributed that to having a 3 year old and never stopping and went to a doc for a new patient visit. That is where he found the heart murmur and the rest is history.

I have put my surgery off since I found out in April since I had just started a new job and did not feel that I could be out so soon. I am very upset about having to move this up before Christmas, but I guess that things happen for a reason. I have alot to get done in the next few days.

Well, I have rattled on enough. Is your husband getting a mechanical valve? I did not want it but because of the aneurysm being in the root, my doc did not leave me much choice. Good luck and I wish you a wonderful holiday.

Shana

 

[Bob Gleason]

Hi Carolyn...Hi Kelly

Hi Carolyn...Hi Kelly

I had an anuerism on my aorta and biscuspid valve and had surgery 11-4-99........aortic root and arch replacement and St Jude mechanical Valve implant.

Take a read through our stories and ask questions. We have a lot of answers, a lot of caring and concern ......and mended hearts.

Good Luck.

 

[John & Joann]

Hi Carolyn & Kelly,

Hi Carolyn & Kelly,

Welcome to the greatest source for information prior to surgery.

You CAN live a fairly normal life following the surgery. (See post on significant other regarding Joann). Follow directions, watch for infections, ask questions, raise a little H--- if the situation does not seem correct, etc. READ, LISTEN, PRAY.

We are all with you during the journey to recovery.

 

[Brade]

Hi Carolyn,
I' 62 and just had MV repair at Cleveland on Nov 8th. I know this thread is for replacement but what the heck. It's been 4 weeks since my surgery and I still have twinges of pain but not too bad, every day is a little less.
You're husband is young and in good shape, he should bounce back from this thing in no time. Just remember, these Doctors do this surgery every day, they're good. Tell him to take it easy for the first four weeks after surgery and not to over do it for awhile after that.
We all know what you're going through and you have a lot of support from all. Have a Merry Christmas and "look forward" to the surgery. He will be well then and all this will be behind you.

 

[Mara]

Carolyn and Kelly

Hey come, the surgery is not too bad. What could be better than a new year and a new heart vavle?

I had my Ross Procedure at age 33, so us thrity-somethings are doing fine.

I know the feeling of hearing that "now" is the time. but, once you are over the initial shock, things look a whole lot better.

The surgery is a scary prospect, but not as scary as the alternative. Daunting to say the least. This site was a huge help to me, and I am glad I could help others. That's why we're here!

Kelly will feel so much better after the operation. He'll be amazed at how fatigued he was even though he might not really feel it.

Ask a lot of questions. the folks on here have been thru the gamut. They know a lot.

-Mara

 

[Lorraine]

Hi Carolyn,

Welcome aboard! You will get a lot of useful information from this site! It was a year and a month ago that I found out I had to have two valves replaced. Surgery was March 8, 2001 and I can honestly say I feel a lot better. I too was getting weaker and short of breathe and just thought it was the job change and commuting to downtown Chicago. It was a shock to me, but as you can see from everyone you heard from, our lives don't end, we all bounce back after we've healed. This site you will find, will seem like a God send to you. We are all caring people here and we want to relate to others, our experiences. Anyway we can help, we will. I personally don't have my story up yet but I plan to do so soon in the near future. Read the stories if you get a chance, as they are very helpful in making you not feel soo alone in this. What kind of valve is Kel getting? Did your doctor give you a choice? I was 50 years old and my cardiologist adviced me to get the mechanical valve. I'm on Coumadin and thanks to everyone on this wonderful site, I've learned to adjust and not be so scared of taking blood thinners. I will keep you both in my thought as prayers!

 

[Bill Hall]

Carolyn - Glad that you found this site. I think you can ask a lot of good questions. I also had a bicuspid aortic valve replaced by homograph, last year on Jan 12. I was out of work for six weeks and enjoyed the time off after the surgery effects were gone. I was always planning what I was going to do with the time off. Your husband is young, ten years less than me, I saw men 20 years older than me come through this surgery with flying colors. The holidays make it easy to pass the time, and make sure you have plans on New Years to pass the time. I never had too much time to dwell on it. Good luck to you and your husband.

 

[McCln]

To Carolyn and Kelly

To Carolyn and Kelly

To Carolyn, we happen to share a name but spelled differently. Don't worry about things too much. Your husband is young at 37. I am 36 years and had surgery three months ago and had aortic valve replacement, was born with heart murmur which effected the aortic valve. The replacement was not news, I had repair done 28 years ago at age eight. So 28 years later had surgery. I feel so much better, hope your huband's repair does the trick for sometime. It is a little scary but you have to remember a lot has improved in surgery and repairs for the past years. Your husband is luck to have the reapir done now than years ago. You are lucky also that he has a good chance to live longer and that the problem was caught in time. You both keep hanging in there. It will be alright.

Caroline
091301
Aortic valve replacement
St Jude's valve