New to forum, husband facing OHS

[nursekelly]

Hi Everyone,
I am new to this forum and just need a place to vent! My husband, who is 36, has biscuspid aortic valve. He was diagnosed in his 20's and has had an echo done every year to check up on things. On the last echo, we found out last week, that the valve is regurgitating more and the left side of his heart is getting larger. He goes in for a TEE this Thursday and cardiologist is pretty certain he will need valve replacement within the next few months.
I am panicked! We have 3 boys, a newborn who is only 8 weeks old, a 3 year old and a 4 year old. I am trying to stay strong for him, but I find myself getting very upset and angry all the time.
I know this is not his fault, but I am struggling with how we are going to manage with the young kids, finances, time off work (since we both just came off a maternity leave) etc.. I feel guilty for feeling this way and don't want to burden him with my concerns - he has enough to worry about.
I am an Operating Room nurse and he is a surgical tecnologist at our local Children's hospital so we have both been involved in these procedures numbers of times, and have seen the good as well as the bad. I think that is making it worse - we just know too much.
His dad died at a young age (53) after years of heart problems, MI's and bypass surgeries. I think that has him worried that he will follow the same course, even though their diagnosis are not the same. He keeps making comments to me like "we should go on a family vacation soon just in case I die". Comments like this are not helping me and I find myself pulling away from him because I don't want to think about things like that.
Anyway, just needed a place to vent. Wondering if there are any other wives with young children who have been through this and how they managed. I feel like I am losing my mind but still need to hold things together for our family so I just put on a smile in public and cry my eyes out in private.
Would appreciate any words of wisdom from those who have gone this path before.

 

[Ross]

Hello and welcome to the forums.

Yes there are others and there will always be more too. I'll let them talk with you rather then talk for them. I'm just here to greet you and to tell you he isn't going to die, though you might kill him once he's home.

Yes you've seen the good and the bad, but so long as you've got a surgeon that you know and trust and who has done many of these in the past, all will be well.

 

[Tom F.]

The news that you need or someone near you needs OHS is always difficult to take. But when I read your post, and what came to my mind is "he is young, will recover fast, good thing that the technology exists today to perform OHS, it will save his life." Take a deep breath, and move forward with what you must do. Now is the time to prepare, get things in order, figure out where the surgery will be done, and by who, and start to consider valve options. I am sure your husband will be fine once this is all over. Good luck.

 

[Freddie]

Welcome NurseKelly, you have found the best place to vent.....and thats a good thing.
Since you both know the in and outs of OR, although it may be hard to do and that is to relax and to think positive and reinforce to your husband (and yourself) that everything will be fine and together you'll take things one day at a time.

 

[ALCapshaw2]

Since your husband has a BAV, my recommendation would be to go to the Best Aortic Surgeon you can find.

Dr. William Ryan in Dallas comes to mind. Several here credit him with saving their lives under dire circumstances.

From one of the many links to "Dr. William Ryan" on GOOGLE:

http://www.heart-valve-surgery.com/william-ryan-ross-procedure-cardiac-surgeon-heart.php

DR. WILLIAM RYAN, MD - CARDIOTHORACIC SURGEON
Cardiothoracic Surgery Associates of North Texas (CSANT)

William Ryan, MD, is a practicing Cardiothoracic Surgeon with Cardiothoracic Surgery Associates of North Texas (CSANT), attended the University of North Carolina School of Medicine, Chapel Hill. Dr. William Ryan resided at the University of North Carolina School of Medicine in the Department of Endocrinology. Dr. William Ryan was a resident at the University of Texas Southwestern Medical School at Dallas in the Department of General Surgery, as well as at Vanderbilt University Affiliated Hospitals in Nashville as Chief Resident in the Department of Thoracic Surgery.


Dr. William Ryan has been on the American Board of Surgery since 1983 and the American Board of Thoracic Surgery since 1985.

William Ryan is currently a member of the American Medical Association, the Texas Medical Association, and American Heart Association.


Dr. William Ryan was also elected to be a member of the Parkland Surgical Society, Dallas County Medical Society, the American College of Surgeons, the International Society for Heart and Lung Transplantation, the Southern Thoracic Surgical Society, and the Society of Thoracic Surgeons.

Dr. Ryan has published chapters in both the Year Book of Pulmonary Disease and Thoraco-Laparoscopic and Minimally Invasive Surgery. He also serves as a co-investigator in the TMR Trials and is a well known expert with the Ross Procedure.

Dr. William Ryan is a cardiothoracic surgeon with more than twenty-five years experience caring for patients with heart and valve disease. He joined as a partner with the CSANT physician group (www.csant.com) in 1984 and has held numerous positions on the group’s Board of Directors. Dr. William Ryan is an active researcher for the nonprofit Cardiopulmonary Research Science and Technology Institute (CRSTI) (www.crsti.org), often serving as a lead investigator for national cardiac research studies.

Dr. William Ryan's medical interests include minimally invasive valve surgery; aortic valve replacement and repair; closed-chest procedures for atrial fibrillation; cardiovation for mitral valve; and stentless valve surgery. Dr. Ryan primarily practices at Presbyterian Hospital of Dallas and maintains privileges at Medical City Dallas, Presbyterian Hospital of Plano and Baylor Regional Medical Center of Plano.

Board certified in surgery and thoracic surgery, Dr. William Ryan moved to Dallas in 1984, joining the CSANT physician group. Dr. William Ryan showed an early interest in thoracoscopy in the diagnosis and treatment of diseases of the chest and later helped to pioneer port-access valve surgery. He is recognized as one of the few surgeons in the nation experienced in performing the complicated Ross Procedure.

 

[dick0236]

Welcome NurseKelly, stick around.....there are a lot of young women and young men here who have gone thru this, either as patient, or spouse. You will get a lot of support from many here who were in situations similar to yours.

 

[catwoman]

NurseKelly:

Another Fort Worth area resident here!
What hospital and surgeon are being considered? My husband & I went to Dallas for our MV surgeries. So, we've each been on both sides of the fence, and my father-in-law paved the way with 2 VRs, in 1979 and in 1989.

Facing surgery when you have children will be different than it was with our household. We only had to deal with pet care while each of us was in the hospital and then how to avoid cats jumping on us when we came home.

That's a far cry from how to tell little ones that Daddy will be in the hospital to have his heart fixed and that he will be a little sore when he comes home, so you'll need to be his own personal "nurse" while he gets better. In fact, that may be a way of letting the 4-year-old help a little and feel important.

 

[hensylee]

vent listening is one of our specialties. Welcome to our home. Come on in and vent away.

when it becomes you or your loved one, that hospital experience sorta takes a seat beside you, doesn't it. Now that you have reached the foot of the mountain the walk uphill isn't all that bad. Look at all the survivors right here in VR and will talk to you as long as you want.

You will get lots of information and support - heck, you might even give us some information, too. (we love medical folks).

Welcome to VR.

 

[Cooker]

Welcome to the zoo ... It is a frightful thing when it is in your home ... Sounds like your husband is young and tough ... I am sure all will go well ... hang in there and vent away

 

[WayneGM]

Welcome to VR. Sorry for the circumstances but glad you found us. Vent away....we're here to listen. The timing doesn't sound ideal, but then it never is. He's young, and I assume otherwise strong and health, so he's likely to recover fairly quickly. My wife and I talked very openly about all the implications of my pending OHS at the time and by doing so we found strength and comfort in each other. That also allowed us to focus on being very deliberate about planning on how we were going to cope with this disruption in our lives. Although our kids were teenagers at the time, it was still a significant disruption, but we managed through it well. Best wishes and good luck.

 

[vtwhip]

NurseKelly,
Do you have family that lives near by or is willing to stay with you for support? My husband is facing valve replacement surgery soon, but not scheduled. We have one child and, although our family lives out of state, everyone is offering to come and help out. I've taken the advice of many from this site, and that is accept whatever help is offered. Best of luck to you and your family.

 

[Phyllis]

Welcome. You both will be in my prayers and thoughts. Your husband is young and I am sure he will do just fine and will be better than ever when this is over. Please keep in touch after his Tee and let us know when and if surgery is scheduled.

 

[surfsparky]

Hi and welcome!

Your path is similar to ours...my husband has BAV and he had surgery 5 years ago at the age of 32. At that time we had two small children -a 3 year old boy and a 6 month old baby girl). It was the hardest time of our lives but also the most precious. For me, I went through such extreme emotions....one moment really strong and postive, and the next crying constantly. We went on a family holiday prior to surgery which was amazing...we laughed together, cried together and spent lots of precious moments having fun. It was good to be away for a week and not be consumed by doctor's appt's and talking to our friends and family about it. Chris asked me to take lots of video footage of him and the kids...he didn't explain why, but I knew it was because he was fearful that he wouldn't make it thru surgery. Chris and I decided that would be honest with each other with our thoughts and fears...and it was amazing....the moments where he was scared and emotional, I was strong, and the times where I was down and found it all too much, he was strong.
One thing that someone told us was to change our perception of Chris' surgery...instead of seeing it as life threatening, choose to see it as life saving. I still had my teary, scared moments, but it was more comforting seeing surgery in that way. I too was worried about finances etc but it all worked out...friends and family were the glue that held us together....meals/ supplying wood for our inside fire/ praying for us etc. We were so blessed.
For me personally, I don't believe that we can stop worrying, but I do think we can make a choice to stop it from controlling us. We made sure that we did lots of fun things with the kids and we went on some dates with just the two of us.
I hope all of this makes sense...I'm typing this with a little one on my lap (we celebrated his good health a couple of years ago by adding to our brood, a little girl)...please vent whenever you need to...it's such a difficult time...and know that you have lots of people here to support you.

Hugs,
Yolanda

 

[kfay]

Yolanda, Your post says it all for me. It brought a tear to my eye reading it...I felt all of those emotions all over again. We too did the vacation thing before my surgery and I was very careful to let the small things (and most big things too) roll off my back in that time before my surgery because I didn't want my husband or kids to remember me being mad at them in case I died. I also spent the whole time on the plane flying to the Mayo clinic in a blubbering mess writing letters to my children "just in case". I couldn't help thinking about that part of it. Obviously, the "just in case" didn't happen and the odds are pretty damn good that it won't. I know it is very hard on the spouse side of things...quiet honestly, I'd rather it be me than him. I can't imagine waiting for hours on end to hear the news. Try and take a deep breath, know that in a lot of ways this "before" part is the hardest and know that his mind is probably in a million different places at once...I know mine was.

Let us know how things are going.

Kim

 

[Susan BAV]

Welcome Kelly; glad you found the site and sorry for the emotional strain you are all dealing with. I don't know if this post will come across encouragingly. I mean for it to but don't always word things well. But I'll tell you that I really feel for what you wrote and how you are feeling. Your post really touched me.

Having been a mother myself, I couldn't help but wonder if your emotions are particularly stretched -- besides with all you have dealt with, including possible sleep deprivation from having a new baby and little kids -- but also with the usual hormone readjustments that can take weeks/months to fall back into place following childbirth. Upset frustrations and such can occur even without this kind of big issue facing your happy little family as you deal with this tough time.

I also have wondered if the whole OHS event might be even more difficult for male patients than female patients, because of the common "breadwinner" situation and all that goes with that. And I also have discovered, from reading about it here and from personal experience, that open heart surgery can be very difficult emotionally for the patient's spouse. I just didn't realize it at the time.

But you all will no doubt survive this as a united family and enjoy stability again and be stronger for the experience.

As a nurse, you probably know which nearby surgeons are terrific and/or how to find out which surgeons are really terrific. The biggest shock was probably finding out it's time for the valve surgery. Once you two find the surgeon you want and get a date, I'll bet your ducks will all get lined up in a tidy row.

And I'm hoping for the best for you all. Take care and post again .

 

[netmiff]

nursekelly, first of all, welcome. Second, I think we've all been there - I know that when I first heard the words "open hert surgery" I nearly flipped right out ! I was being followed for a murmur that turned ont aortic stenosis, and knew I would need surgery "sometime". When cardiologist said "sometime" is now "soon", I almost shut down. 2 years later, he said "the time has come".

I was s**t scared, I don't mind telling you. I also lost my MIL the week the cardiologist said "now", so doctors and OHS and death and dying were near the front of my head. It affected just about everything I did for that 6 months.

"...instead of seeing it as life threatening, choose to see it as life saving."
Surfsparky said it all there. I had a bicuspid replaced about a year ago with a nice new mechanical, and although was never symptomatic, I have not felt better in a long time. My mother says I have more colour in my face than since I was about 14 years old! Surgeon says he would not have liked to have left it until after Christmas.

I know it is a shock, and a major upheaval, but it needs done, and it needs done now (especially if there is already enlargement of portions of the heart). Take all the help you can get from friends and family, and look forward to a lifetime of raising your kids together.

I am also sure that your husband doesn't expect you to be a rock all the time, and will take his turn at comforting you.

Recovery is not as bad as you might think. He will need to take it easy for a while, no straining or lifting, but after a week or so at home, he should be able to make a sandwich or soup for himself and that kind of thing.

 

[nursekelly]

Thank you all so much for responding. It is comforting to know others have been there and done this and made it through to the other side.
Yolanda, thank you especially for your words. After reading your post I can tell that I do need to change my mindset as all I can focus on right now is that this is life threatning. I am going to keep trying..I know he is probably tired of seeing me cry all the time!
I am sure a lot of these emotions are due to postpartum hormones and lack of sleep for sure as my little one is still not sleeping...and being back at work as of last week!
Being in the medical profession, specifically in cardiac OR, does have it's pros and cons. Being in the "heart room" has been a routine of mine for the last 9 years..it is much different when it will be your own family on the table.
Catwoman: Currently he is being seen in Fort Worth, Dr. Malik, will do the TEE on Thursday. If he needs surgery he will probably be referred to Dr. Macias from Plaza Medical Center. We have considered going to someone in Dallas if he needs surgery, but family is in Fort Worth and it might be easier to stay close.
My parents live close and have offered to help, but they both have full time jobs also.
His sister, who would have been our greatest source of help, is moving to Atlanta in a few weeks. Doesn't know if she will be able to come back yet as her husband will have a new job and they have 3 young kids also who are in school.
We really haven't told people yet, at my husband's request. Kind of annoying me because I really can't talk about it with any of our friends because he is not ready to let people know. I don't think he realizes yet how much I need to vent about it...which is why I came here. I am sure when people find out help will be coming out of the woodworks!
Thank you again for all the words of encouragment and I will surely keep coming back for more encouragment and advice! When we know something from the TEE I will update!

 

[Freddie]

You know nursekelly, I think you have to talk to your hubby in regards of telling/talking to your friends. Holding all of this inside is simply not healthy for either of you. Its best to talk about it and once you do, you both may feel a little less burden.

 

[zipper2]

Welcome Nursekelly,
Good your posting and have been able to vent,better
than holding it inside. I had my first avs at 31 and on
my way to 2nd soon as scheduled (NOT AS OF YET)
for mvr and i'm 47 now.
First time was all denial for me and i stayed busy at work
it was best place to not deal with reality of myself.
i never had this great support of people at VR nor did my
hubby,there was fear ,anger ,resentment,morality thoughts,
Our children were so young,youngest was 5. I didn't want any
one told either friends or family,and then one day i was taken
emergency,sent to hospital and surgery had to be done asap
cus not all were told about my condition,alot of further family
and friends were not able to be there to support my husband
at the time he needed the support,we had main family,they knew
but alot were shocked cus they didn't know. My second surgery
doesn't even fiz right now or maybe it hasn't hit me yet,the
reality,or i've been there ,done that and know the fears of the
16 years ago are now known fears for this surgery. But pretty
well everyones aware 2nd time round for me,just dont know when.
If the reality hits me hard i know i have this wonderful group
of people to vent,cry,or listen to my tantrum,....Glad you joined
you'll find the support is tremendous and vent away!!!

zipper2 DEB

 

[gerrys]

You know nursekelly, I think you have to talk to your hubby in regards of telling/talking to your friends. Holding all of this inside is simply not healthy for either of you. Its best to talk about it and once you do, you both may feel a little less burden.

Nursekelly:
Welcome to the forum. I couldn't agree more that it's important to open up with your husband. I can understand your being angry and apprehensive. The more you share your feelings, the better the both of you will get through this. Believe me, the time will pass quickly - and then you can look back on it thinking it was just another mountain conquered.

Best wishes to you and please keep us updated.
Gerry