New to forum, husband facing OHS

[ALCapshaw2]

Since your husband has BAV, it would be good for you (and him) to read through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum.

It appears (to me anyway) that the connection between Connective Tissue Disorders (and Aneurisms) and BAV is only recently becoming recognized with studies to back it up.

That said, it would be wise for your husband to have his ENTIRE Aorta visualized by either a Chest CT or MRI, to check for possible aneurisms. (Note that Simple Echocardiograms do NOT fully visualize the entire aorta).

WHY check the entire aorta? Because we have a number of BAV patients who have had AVR Surgery, only to return a few years later in need of AORTA Repair or Replacement due to unrecognized or untreated aneurisms (often the result of a Connective Tissue Disorder).

Does the surgeon you are considering have considerable experience doing surgery of the Aorta, up to an including the Aortic Arch (just in case your husband may need it)?

From what I've read on the BAV and CTD Forum, I've concluded that Surgery of the Aorta is WAY beyond the 'comfort zone' of surgeons whose experience is mostly with relatively simple Bypass Surgery and first time Valve Replacement surgery, but you probably already know that. FWIW, Dr. William Ryan in Dallas is recognized as one of the Top Aorta Surgeons in the country.

'AL Capshaw'

 

[SHEEPDOG]

I totally understand...

I totally understand...

...being scared. All of us do. Just living your life, FAT-DUMB and HAPPY and then BAM! You are scheduled for surgery! LOTS of people have this surgery done. My surgeon does 2-4 a DAY. Not all valves but he does PLENTY of them too. Just take it one step at a time. Better to do it now than to wait for age and symptoms to catch up. I am 43 and 8 weeks post op. Will be 44 in sept. I bet everything will be fine. Good Luck.

 

[briansmom]

I'm so sorry that you have to go through this now. I can't imagine trying to hold it all together when you have 3 kids - one of whom is not even sleeping through the night yet.
I just want to reiterate that your husband is young and in good shape. It will not be nearly as bad as your fears. That being said, I had to take sleeping pills every night for about 30 days before my son's last surgery. You don't have that luxury so you really need to make a plan to help you with your stress. Please enlist your friends and family to give you alone time before and after the surgery. Journaling has also helped me deal with my emotions. When I am overwhelmed I spend 20-30 minutes (alone) typing out my worst fears - then I have a good cry and then I delete the whole thing. Please find something that works for you.

Hang in there and please let us know how you are doing.

 

[pamela]

I think the change of your perception of the surgery is going to help you so much more than you realize.

Since you are both young and otherwise healthy, you may not have all of your testaments and insurance in order, take some time and update these very important documents. Next, make arrangements to keep your health and life insurance up to date and paid for. If you have some kind of health benefit attached to your credit accounts, you may want to look at calling that support in.

Don't forget to say "I love you" out loud and often.
Don't deny your spouse the power gained through holding and supporting each other through the inevitable fears and concerns.

Remember, the chances of a young and healthy person's surgical survival are as good as the protection against contraception provided by the pill, the chance of not surviving the disease is greater than that, at 100%.

Life-saving...

Welcome to the lifeboat.

Take Heart, the mountain isn't nearly so high once you're down the other side.
Pamela.

 

[ponygirlmom]

My husband had a much harder time with my impending surgery than I did.

What to do with the kids: Nanny. Think it sounds expensive? Not compared to your medical bills! Consider it part of your entire surgery budget.

Seriously. Everyone and their dog will want to help you immediately after surgery. You have to think four, eight, twelve, sixteen, thirty-two weeks down the road.

 

[Natanni]

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.

Hello and welcome

Your story hits very close to home. It was my husband facing similar situation in 9/2005 when he was 34 years old for replacement of his BAV. His father was a heart transplant recipiant at 46 year old (cardiomyopathy). I am an OR nurse as well, SFA. Having worked in surgery only made me more apprehensive of my husband's surgery (but I really rocked as his bedside nurse post op ) Honestly though, having worked so much in OR made me very anxious about his AVR. I had a very hard time dealing with it, but it did get better as we got closer to his surgery. One thing I can tell you that helped me is to TALK to people. Keep your friends involved and chat their ears off about your feelings. If you have an friends in surg. too, they can be so helpful. Getting out to a place where you can relax and chat really helped.

We had a terrible time prior to his surgery when he was trying to make a valve choice. We had so many people offering their opinions, their wishes, and he could only think of trying to make a desicion for himself and our children.

I still worry about him every day. His job is physically and mentally demanding, and I wonder how he will ever make it to retirement safely but life is good and there is nothing better than seeing great results of AVR, a healing heart

Wishing you guys all the best....

 

[EVELYN]

Hello Kelly and WELCOME!!

First of all, take a deep breath. You have come to a wonderful place with loads of caring people who will help you get through this. Your feelings of panic, anger and frustration are absolutely normal. My husband had AVR at 59....with no children at home, and I was still panicked. The most important thing is that you take it one step at a time. It sounds as though your parents will be there to help when they can....maybe people at your hospital can pitch in also. You will get through this and be able to look back on it. I never thought I would utter those words, but Tyce's surgery was 6 years ago and he's fine, thanks God.

This group will be here for you whenever. and venting is what we handle best. Happy, sad, angry, frustrated, depressed, upset, you name it, and it doesn't have to relate to heart issues either.

Anyway, welcome aboard.

Evelyn

 

[catwoman]

Nursekelley:

My late father-in-law had his valve surgeries at Medical Plaza Hospital, in 1979 and 1989. His doctors were Akhtar (sp?) and Choudry (again sp?).
When I was told I needed MV surgery, I was told I needed to go to the Cleveland or Mayo. I went to my dad's cardio in Dallas for another opinion and switched to him for my care.
I researched hospitals in Texas, both in Fort Worth and elsewhere, and chose Baylor in Dallas, since it does more valve surgeries than those in Fort Worth and because my parents are in Dallas. John spent a couple of nights at their house. I stayed with my parents for 2 weeks after leaving the hospital so Daddy could take me for one or two post-op rechecks and for INR tests.

I'm sure that, with your background, you can find out how many valve surgeries a year a given surgeon does, and how they break down by valve, whether repair or replacement.

 

[hoodie978]

Hello!
I am a RN also and boy do i relate with the "knowing too much!" Being in the ER for three years didnt put a very good picture in my mind when my boyfriend was diagnosed with the aneurysm. Ive been more stressed out about this whole thing than he has, up until this point anyway. As the surgery date gets closer, his level of anxiety is escalating. We went from searching for a home to buy, to trying to find the best cardiac surgeon.

I have found this blog to be extremely helpful. A place to vent, to learn, and above all a place where so many other people are going through the same thing.

Good luck to you.

 

[notneb1970]

Hi Nursekelly,

My husband just had his 3rd OHS in July, he is 38 and we have a 10 year old daughter. I also am a ICU RN, so I see the worst of most surgerical situations. We both cried prior to to surgery and even talked about funeral arrangements and what I would do if the worst happened. I also vented to my mom and a few friends, which is what helped me get through it all. We also took a short vacation in MN, right before surgery so we could get in some quality family time.'
He is nearing his 8 weeks out from surgery mark and will probably be released to return to work in 1-2 weeks. Unforunately since he has been out on short term disability for almost 6 months......his employer went bankrupt and laid everyone off with no notice and/or medical insurance. So, we are facing him having to find a new job in this economy.
Wish you 2 luck....and sending u hugs!
Dawn

 

[SHEEPDOG]

once again...

once again...

... just take a deep breath. It will be OK. I guess I am lucky by not knowing TOO much about the OR and HOSPITALS and such. A little medical knowledge can't take you TOO far.
Your husband is young and if this is the only problem he is facing, then he will recover fast. Catwomans suggestion of how to handle the little one sounds like what I told my 6y/o 11 weeks ago. We had family that took him while I was in the hospital. That will help too. I won't go into the detail I could, as you have seen the other side too many times to mention. Just find the best DOC and HOSP. and believe it will work out. Ask questions,and ask them again.
Let us know if we can help.

 

[Bionic Man]

My over analysis of my issues as a heart patient

My over analysis of my issues as a heart patient

Forgive me for quoting my own post from another forum but I hope some part of it may help you. I took the low road of being a wuss, others take the high road of trying to be too strong but a lot of the feelings come from the same places. Hopefully it will help in some small way.

"When I was nearing surgery my wife mentioned the "D" word for the first time in our marriage. (14 years at that point) We rarely ever fight but for a while we fought quite a bit. I've been thinking about it a lot and thought others probably experience similar things so I thought I'd try to explain what it was in our case that caused this. I don't mean to trivialize it by putting it in bullet points but for me to remember anything I need to itemize it...

She thought:
1) my wife was VERY afraid and thought I was giving up or just waiting to die (her mother and father died young)
2) she didn't understand why for a long time I hadn't been exercising or trying to get fit before things got really bad
3) she thought she'd rather the boys not see me "give up" and that she'd rather they were'nt around me when I was allowing myself to die.
4) she was upset and frightened of losing me and was trying to make sure I didn't like hearing me complain because deep down it increased her fear

I thought:
1) I was more afraid of the surgery and possibilities than actually dying
2) I was in shock and wasn't thinking rationally
3) (subconsciously) I was depressed and it was easy to think of #1
4) I complained a lot because I was scared
5) I kept fantasizing that there was a way out, or that surgery could be postponed

In retrospect I don't blame my wife at all and rather in fact I'm sort of glad she smaked me in the face a bit. I'm still not happy we had those moments which were pretty bad... I was depressed and could have taken the low road and pushed things to the brink because of my feeling sorry for myself. << SO I'M NOT RECOMMENDING HER APPROACH >> I hope you can talk about these things before it gets to the point of confontation.

The solution for us seemed to be:
1) (COMMUNICATION) I explained my massive phobia to her and she explained where she was coming from. To really communicate one person has to listen until the other is completely done without interjecting, then the other says their piece. Any other variation has a chance to end up in an argument... at least it was that way for us.
2) I tried to complain less
3) I tried to make plans for after surgery and scheduled holidays away with the family in advance
4) Tried to keep any "just-in-case" planning stuff under the radar or at least not talk about it much
5) She promised to be more understanding of my fear
6) When she did catch me complaining she'd give me a hug because she knew I was feeling scared
7) She came to my doctor appt and talked to my doctor and he helped her realize I had been much sicker than either of us knew which was kind of a wakeup for both of us.
* 8) She logged in here and asked some questions (that was the real turning point) -THAT WAS A HUGE HELP!!-


After surgery things weren't done. I was on cloud 9 for a while as my recovery was going well but later I found myself moderately depressed... My Doc said everyone gets depressed at some point after surgery except those who are 90 or older. Then he joked about that it was probably because they were just so glad to be alive. I was certain I wouldn't get depressed but later I found out he was right about the depression.

The root of my depression after surgery seemed to be:
1) lots of attention before, during and after surgery until people think you're ok then NOTHING
2) reality/work hits again with no additional respect or considerations
3) you feel loved when people serve you, suddenly when you can do pretty much everything again you don't get that feeling any more
4) STUPID PAIN KILLERS (wonderful but nasty things... painkillers sometimes connect you to bad thoughts and things you'd otherwise not contemplate) When i gave these up I felt MUCH happier... of course sleep is important too so pace yourself on weaning off the heavy duty painkillers.
5) Work and other things you thought were important before suddenly don't seem to matter. After surgery and time off work there is a tremendous desire to live in the moment. Work suddently does not satisfy you in this instance. It's difficult to commit yourself fully to work when you really would rather be planning a day on the lake or a trip around the world. For those who's work is their identity this is a hard transition and it's painful at times to go back to working.

How I got over depression:
1) stopping the pain killers
2) EXERCISE! (made a world of difference)
3) getting over my new need for being special and just being happy with trying to live in the moment more often

Well, that's my attempt at playing armchair-psychologist... I don't know if it will help anyone else but I feel that I should put it out there. People are human and we get big feelings happening when lives are on the line. I honestly realize now that all of it was infinitely harder on my wife than on me. And as usual she was right about most things... I was being a wuss but had to get over that before I could really commit myself to healing. When all was said and done the surgery wasn't that bad and once I committed myself to being strong I had a good recovery.

I hope this information MIGHT help you avoid similar issues if you take the path that I took and perhaps it will help you having your eyes open in advance.

David C "

 

[Montrealer]

Must concur with the above post concerning painkillers.........the sooner I got off the G-D-damn oxycodone the better I felt...............