TEE confirmed it

[nursekelly]

An update...
My DH had his TEE last Thursday and it confirmed what I think in our hearts we already knew.
The regurgitation from his aortic valve is signficant and his heart is quite enlarged. So we will definitly be heading down the path to surgery. We meet back with the cardiologist today to schedule the cath and talk about surgeons.
I thank EVERYONE for their words of encouragment. DH is still not wanting to tell a lot of people which is still hard. We both work at the same hospital, for the same department, so there has been a lot of questions as to why we keep missing work. I can only hope he will be ready to talk soon....for our sanity and our job's sake!
Still having moments where I feel like I am not holding it together, but after getting the ECHO report I am starting to view this a little differently. I am starting to see that if he doesn't do this he probably won't be here with me anyways...so we have to do this for him to stick around for me and our boys.
I will keep posting as we know more...it is helping to at least get it all out here!

 

[thenewmarket]

NurseKelly,

I am also the wife of a husband who has already walked the path your husband is taking. Our diagnosis was a SHOCK.....my husband had an ascending aortic aneurysm and an aortic valve in distress. He is/was the absolute picture of health and it was difficult for some folks to understand the severity of this situation. I cried, he cried, we cried together! At the end of the day, we acknowledged how blessed we were that all this was found, and we began exercising our faith. We know God is in control and we leaned on Him to get us through! Was it easy? No. Was it perfect? No.

Being the spouse during all this is sad and difficult. To watch the love of your life suffer is heartbreaking but just take heart that you all will pull through!!! Talk to trusted friends, talk to this forum, pray, cry and get it out..........

I understand.

 

[WayneGM]

Acceptance of the situation is half the battle. Now that you've confirmed the problem you can put that uncertainty behind you and move on to the solution. OHS is not as bad as it sounds, and life is great on the other side of the mountain. Now that the surgery is inevitable, I'd encourage your husband to at least let the key people (bosses, close colleagues, etc) at work know the situation. If anything, it will help release the emotional tension of trying to hold the information back. Best wishes and good luck to both of you.

 

[Ross]

Well don't go and disappear now, your family. Besides, the waiting is the hardest part of the whole thing. It's been known to drive people insane.

 

[Susan BAV]

For some reason, I didn't want to tell many people before-hand either. Pride mostly, I think. I have always looked relatively healthy and I also have a significant and unreasonable internal horror of being branded hysterical or a hypochondriac, probably a result of my school years and the snide comments I suffered from ignorant gym teachers because I was never allowed to take P.E. .

I think my husband told more people than I did, in his shock and worry.

But I was feeling emotionally vulnerable and was second-guessing what potential responses might be, I think. But I'm also sure that part of my fairly unreasonable reaction was related to being so physically ill. A valve patient sometimes becomes ill so gradually that they don't even recognize the situation for what it is and it can affect emotions also.

The new valve gave me such new life and energy. I hope it will be that way for your husband also.

 

[ALCapshaw2]

Acceptance is a MAJOR step in the process. Congratulations!

Has anyone suggested the reason for his regurgitation?
That would be useful informaiton, especially if he has a Bicuspid Aortic Valve. As I mentioned in a previous post, BAV is often a sign of a Connective Tissue Disorder than can lead to aneurisms. If he has a BAV, checking his entire Aorta for aneurism(s) by Chest CT or MRI would a wise thing to do *before* surgery so that ALL of his issues can be addressed in *one* operation.

Best Wishes.

'AL Capshaw'

 

[Phyllis]

As everyone has said, the acceptance and the waiting is the hardest part! Be sure to let us know when you decide on a surgeon. There is a good thread in the pre-surgery thread on questions to ask the surgeon.

 

[Cooker]

Waiting is hard .... we will help you both up and over the mountain

 

[Guest]

I thank EVERYONE for their words of encouragment. DH is still not wanting to tell a lot of people which is still hard. We both work at the same hospital, for the same department, so there has been a lot of questions as to why we keep missing work. I can only hope he will be ready to talk soon....for our sanity and our job's sake!
Still having moments where I feel like I am not holding it together, but after getting the ECHO report I am starting to view this a little differently. I am starting to see that if he doesn't do this he probably won't be here with me anyways...so we have to do this for him to stick around for me and our boys.
I will keep posting as we know more...it is helping to at least get it all out here!

Letting your coworkers know what is going on can be difficult. You should have seen the faces of mine and my boss when I told them. Utter shock! "You're so young, you're fit", looks of disbelief. But, they instantly embraced me, and swore their confidence as I did not want the whole city to know...news travels fast at work. By including them, their added support was priceless. I could relax about missing work for tests, the surgery, my cardiac rehab. They knew full well what was going on. They visited me in the hospital too. They are very good people. As time goes by, I have told a few other people at work and they are just amazed at how well I am doing, especially with my running. Now I'm on a running team at work and running a relay marathon on Sept 21st (a 7 mile leg).

Your emotions will be up and down and so will your husband's. The strength you get from each other will carry you through. I was a mess leading up to surgery. On the morning of, I was calm and ready to get it over with.

This forum was also my lifesaver. I can't thank all the folks enough who share so freely what they have gone through to help others.

 

[catwoman]

Nursekelly:

I was a little hesitant at first to let people in my outer circle know I was facing OHS. But I needed to inform them for several reasons: (1) It explained some of my unease and (2) it was a heads-up so that others could stay on top of a known cardiac condition.

When I meet someone who says they have MVP, I strongly advise them asking their primary care doctor whether they should have periodic echoes. Many people have told me, "Oh, I had one years ago, haven't had one since."

 

[Adrienne]

Nursekelly:

I was a little hesitant at first to let people in my outer circle know I was facing OHS. But I needed to inform them for several reasons: (1) It explained some of my unease and (2) it was a heads-up so that others could stay on top of a known cardiac condition.

When I meet someone who says they have MVP, I strongly advise them asking their primary care doctor whether they should have periodic echoes. Many people have told me, "Oh, I had one years ago, haven't had one since."

I hadn't had an echo in years in about 1999 or 2000. It was only because I was doing some research on the Internet about MVP which said that even if one has only mild regurgitation, you should have an echo every few years, and for severe regurgitation much more often. It was then that I asked to have one and found out I had quite a bit of regurgitation. I then started seeing a cardiologist. However, he was very conservative and old school so he never said I would some day need surgery, and it was only after contracting endocarditis that the doctor in the hospital first said I needed it. In any case, I'm for regular echos.

 

[Freddie]

Nursekelly, what did the cardio say today?
Maybe your Hubby should come on and join us. I know my SO joined in on chat one evening without me knowing it (long story) but after that little chat he had with the other members seems to have lighten him up. Maybe it might help your Hubby too. Just a thought.

 

[zipper2]

Acceptance is a MAJOR step in the process. Congratulations!

Has anyone suggested the reason for his regurgitation?
That would be useful informaiton, especially if he has a Bicuspid Aortic Valve. As I mentioned in a previous post, BAV is often a sign of a Connective Tissue Disorder than can lead to aneurisms. If he has a BAV, checking his entire Aorta for aneurism(s) by Chest CT or MRI would a wise thing to do *before* surgery so that ALL of his issues can be addressed in *one* operation.

Best Wishes.

'AL Capshaw'

Nursekelly, I feel Al has said it all here and (ACCEPTANCE)
i,m glad you updated us on your circumstances,with the tee
and this is fitting together abit easier for you,your DH will come
around with time and your love and support.
I can totally understand what you both are dealing with,it,s as i first
posted to you alot of what my DH and I went through.
Remember you have this site and use it as needed to help you both.
16 years ago someone told me it gets better....i'dve said they are lying
but the truth is ....it does all the best this moment.

zipper2 (DEB)

 

[ryen0]

I hadn't had an echo in years in about 1999 or 2000. It was only because I was doing some research on the Internet about MVP which said that even if one has only mild regurgitation, you should have an echo every few years, and for severe regurgitation much more often. It was then that I asked to have one and found out I had quite a bit of regurgitation. I then started seeing a cardiologist. However, he was very conservative and old school so he never said I would some day need surgery, and it was only after contracting endocarditis that the doctor in the hospital first said I needed it. In any case, I'm for regular echos.

Adrienne, i was in a similar situation. I had a full work up done about 6 years ago, and the cardio said everything was perfect and that was it. Didn't tell me anything about follow ups needed or anything. Fast forward to this year and i started having some chest pains i thought were indigestion. Go to the cardio and he says my valve is leaking severely and my LV is slightly dialated. Thinking back, i wonder if that doctor would have given me more info i could have done something to prevent it from getting that bad. who knows?

 

[surfsparky]

Hi Kelly,

I've been looking out for your posts...thank you for your update.

You are in my heart and thoughts during this rough time...wish I could help.

Be gentle on yourself,

heart hugs,

Yolanda