denial

[NancyMVP]

I've noticed alot of really supportive spouses here.
I've been hesitant to fess up to my delimea. But I need support and I'm not getting it at home.
My husband is in some kind of denial about my condition.
He thinks I'm looking for surgery and just losing some weight will make my heart healthy.
I've been trying to educate him about mitral valve regurgitation.
Thats why this place is really important to me. I know when it comes time for surgery hes gonna say they are all knife happy doctors.
So anyone that has had similiar experience with a non supportive partner. Please share.
So I may have to get through this thing without his support.


For those of you who don't remember. I have MVP with severe Reguritation. Which is being monitored. So far they haven't recommended surgery but its in my future. I don't know when I get echo's done every 6 months.

 

[Mb]

Dear Nancy:

It must be very difficult to be in your situation.

I have known other spouses who also had difficulty acknowledging the health problems of their wives. It was a touch road for them, but frankly, all had other support systems in place (family/friends). Interestly, though, one thing I have noticed with regards to my husbands heart disease, is that many people our age somewhat make light of it. They tell him "oh, when you get to Florida, all the men down there have zippers".
Well, first of all, those are the lucky ones. Secondly, 90% of heart surgery is bypass surgery, which cannot compare with valve replacement surgery, particularly when the mitral valve is replaced. And I could go on. I think you will find that this site will provide you with a significant amount of support, and perhaps, over time, your husband will begin to understand your condition. Perhaps it might be a good idea to involve him. Bring him to the doctors' office with you, and have him sit in on the consultation.
I find it very helpful, to know exactly what is going on. Frankly, it is my life as well. We have been married for 33 years, and in more ways than I can count, both of our lives have been forever changed. Sometimes, when at the doctors, I am able to add comments that are helpful (for example, his not being able to talk while walking), or remember a bit more clearly what the doctor said.
I hope this helps, and we wish you the very best.

Marybeth

 

[JimL]

I agree. Take him along to the doctor. I still have lots of questions even after the procedure, when I can remember the questions.
My wife has been very supportive throughout, bringing me to the emergency room, being there with me in the hospital and in the waiting room during surgery, driving me around for the first couple of weeks, going to the surgeon's appointment with me because I couldn't yet drive, and especially putting up with my moodiness since surgery. And even so, it is difficult for her or anyone who hasn't gone through the surgery to grasp all that's involved. She recently joined this group, which should help both of us understand better.

 

[Perrster]

Join the team and don't deny

Join the team and don't deny

Nancy,

What a bummer to have to go through this silly process with your husband. Yes, it is a difficult subject, however if his love for you is forthright, he should become a team player and stop the denial games.

Work on getting some other people on your side. Try asking your Cardiologist if he or she would take him aside (or personally call him) and explain the true seriousness of your condition. Apparently, the medical facts (even those you get from this support group) are not enough to convince your husband to change his attitude. If that doesn't work, go see a Psychologist or a Priest (hospital staff clergy?). You've GOT to talk it through.

Believe me, spousal support is an EXTREMELY IMPORTANT factor to a successful procedure and quick recovery.

 

[jade45]

And there was none

And there was none

Good morning guys, I lived thru my TEE,I posted about it in pre surgery I thinkHA HA LOL
Anyway I was really wanting to address this issue that was brought out,I haven't been on here long,I have read the support that some on our postee's get from there luv ones,and they are lucky ones,I too, though I really hate to say it in the open that spousal support is not in my house either,I think and I think alot of you agree with me is it not that they don't support your illness it's more that they don't want to accept it.The ones who have to deal with an illness knows that it is there
but some luv ones must put into motion this anti-he/she is not sick ,not wanting to deal with the thought that you are really sick,
My spouse is the same ,he thinks that the more that I do the better it will make me feel ,and now that it has come to all these test,and the news of maybe surgery,he has had his wake-up call
now if I could of have had the help and compassion that I am getting now back then who knows how long I could of made it ,
all I know is that I too came here as she did for the comfort,the caring,support,and compassion that we don't get at home,I know
that this is a built in safety that they have,and I really hate to say it,but I really think it will always be there no matter what.
And like the lady said Thank God you guys are here.

----------------
jade
pending MVR

 

[Ross]

Nancy, what can I say?

Perry gave you the most needed advice.

My own spouse has been through heart operations with her father and myself. She does not like the thoughts of it, but knows it must be done, or our whole marriage may end prematurely by means of expiration. If it were not for the decision she had to make in 1995, I wouldn't be here to offer this post.

I think what your husband is going through is out right fear. Does he make it a habit of not dealing with unpleasant thoughts? Do you both get along in your relationship in other ways? In other words, is this the only issue that he has problems with?

I truly think he is frightened silly of losing you and would prefer not to entertain the idea of any specific outcome. I'm not beating on him in anyway. I'm only trying to understand what he's thinking.

My wife deals with this thing in her own way. One in which I do not like, but she needs an outlet. I only wish it were a constructive one.

I would certainly try Perry's idea of getting the Doc to talk to him on the side and if that didn't do the trick, pursue other means.

 

[Nancy]

Hi Nancy-

I agree that it seems as if he's frightened out of his mind and doesn't have the ability to address his fright, so he's hoping that if you ignore it, it will go away. This isn't something that will go away. Over time, it gets worse. The only real fix is surgery. But of course you know that.

Is there any of his friends that you could enlist to talk to him about it? It sounds as if he needs someone he can open up to.

Plus I think you have to involve him in how you're feeling and the limitations this terrible problem puts on you. A poorly functioning heart affects every aspect of the body.

I think you have to have a very frank discussion with him, telling how much you love him, and that you want to be able to enjoy your life together to the best of your ability, and right now, you can't do that, not because you don't want to, but because you just can't. It would be a big help if he could get involved with your doctor appts. and even this website.

I wish you only the best, and know that you have lots of friends here.

Take care of yourself.

 

[Zazzy]

Nancy,
I agree with Ross and Perry. Are you seeing a counselor yourself? If so ask your husband to go with you for a session. He needs to get his head out of the sand, take off the rose-colored glasses and face this problem head-on.

No, it won't magically go away... my husband tried the denial route for a time but had to face it when I was told I needed surgery. Interestingly enough, we got into a slight arguement the morning of my surgery.... it was a silly thing and we both realize that it was our fear talking because of the possibility of something happening during surgery (which did in the form of hemmorhage). I didn't awaken until the next day and my husband later that when the surgeon came out and told him of all the problems that the possibility of losing me hit home to him.

When I was diagnosed with leukemia (which before the advent of Gleevec carried a five year survival rate), well he really had to face his fears then. Then came the breast cancer. I believe he is numb now. lol

This has been harder on him and my family than it has me.... and I have tried to help them understand both my diseases and how I feel. This is a daily struggle for all of us.

Take care,
Zazzy

 

[NancyMVP]

Back in Oct of 2000 I had been hospitized for a stroke. By the time they took the MRI I had been on heprium for 5 days. When they sent me home with a negative result (no sign of eboli) they just said go home and follow up with a cardiogist.
Oh one of my last visits with my cardiogist I asked him if the heprium could have disolved a small clot in the days before the test he said yes.

Being I was seeing a neurogist in the hospital mainly they just said your fine no stroke. But you need echo's every 6 months.
I did take my husband to the doctor with me. He has selective hearing and hears the remembers the parts he wants.

During another visit to our regular doctor. We see the same interenist. He brought up how the cardio doctor sent him a letter. Saying how he was increasing my meds. How I was going to HAVE TO HAVE THIS VALVE REPAIRED OR REPLACED FOR SURE IN THE FUTURE. In front of my husband. He even stated just having severe regurgitation could warrant surgery. Espically if presented with symptoms.

I've had similiar things in the past. When my son was born with an undescended testicle. We were told to wait a year then if it didn't come down by then he should have surgery. He was so againist the surgery. Ended up he had the surgery when he was 6. My son is 19 years old now. He seems to have trust issues when it comes to doctors.

I not to crazy about taking him on the appointments he makes me nervous. I always tell him when I'm going for the echo cardiogram. I've been keeping him informed.

Plus I don't think my doctor is much of an alarmist. I found out more information on the internet and from a friend that does echos for a living. He didn't say if your ejection fraction drops or your left atrium starts to increase you will warrant surgery.

I'm just pissed cause he accused me of wanting surgery like I want someone to spit me open. Good thing its not him that has this problem.

I really really appreciate all your support it means so much.

 

[Billy]

Time for reality.........

Time for reality.........

Hi Nancy,

I don't often visit Heart Talk as I am now more a 'social' member of this forum, but once in a while I look in to see what's happening on the serious side.

I was in your husband's shoes for just over 20 years. My wife had Mitral valve repair in 1978 and then had replacement in 1998. We were both under 30 when her illness started. Before that, I would have been of the opinion that 'this doesn't happen to folks of our age.'

It wasn't until she started to cough blood all over me in bed one night that either of us knew there were problems. There's nothing like the sight of blood to get the average human to sit up and take notice, so I suppose in a strange way I was lucky - I kinda knew that this was serious from day one. Sometimes we all find it difficult to understand something that we cannot see.

I don't know how best to get the message across to your husband, but you must find some way to do it. You just don't deserve to have to face this all while being ignored by him.

I would so much like to talk to him, to tell him how in our case, WE went to the Cardiologist, WE went for the tests, WE talked to the Surgeon, WE got through the mental aspects of the surgery together, there were times I wondered which of us was more scared.

I would also like to tell him that his support is important to you at this stage, but, 'God-forbid' might also be very important to himself in the future.

I don't want to be alarmist, but as I look back now, I know that I did the best that was humanly possible in the area of help and support. Just knowing that is so important to me........Myrtle died 10 weeks after her surgery aged 44 years.

Show this post to him if you like Nancy - Just do something to make him realise that this is serious and he must wake up to reality.

 

[Nan]

Hi Nancy, I too have a similar problem, not for the first AVR that I had, My spouse was VERY helpful then, but for the possibility of a second one. He is in total denial. And I agree with everyone else who has written. He is probably absolutely frightened to death of losing you. And if talking with the doctor doesn't help (it doesn't with mine either), then you will need to find support elsewhere. Other family members? Friends, clergy? And of course, this site which is composed of wonderful and caring folks. Counseling,for you, at least to start might help...perhaps he could later be persuaded to join you.

Not that I have found a solution either, but I just keep looking around for all the support I can get without appearing like a hypochondriac. And it is there.

My thoughts are with you.

Nan

 

[Nan]

Jade, I forgot to say congrats about getting through the TEE OK. How are you?

Nan

 

[gary]

Support from spouse or anyone for that matter

Support from spouse or anyone for that matter

Most people who have enjoyed relatively good health have difficulty to say the least dealing with sick and recuperating partners. Should they suddenly become sick themselves, and with something far less than OHS, and you are 'cool' to their plight, you will probably be accused of abuse and everything else under the sun.

I don't necessarily agree that partners like yours are fearful, in denial, or some other protective psychological state. They could just be very selfish people who think the world does and should revolve around them only, and your illness is a terrible inconvenience, a disruption of THEIR lives.

That said, I find that seeking support from family, partners and friends was the opposite of what I wanted to do when AVR surgery was predicted for me in July 1999. I did all I could to hide it from my partner, and my parents. My plan was to get it done and then tell them about it. One night a month before the scheduled surgery, an old girl friend of mine came to town and visited my parents. As she was leaving, I walked her to her car she asked about my heart ( having been my girlfriend for 7 years and knowing one day I would need an operation). I told her in confidence that surgery was scheduled for AVR at Cleveland Clinic a month later. She asked how my parents were taking it and I told her they did not know because I was going to have it done without their knowledge. And then tell them after I got back home for recuperation. She urged me not to do that, but tell my mom immediately. I thought about it and two weeks before surgery I told my mother. Being up in years, 88, she was naturally worried and the next day the questions flew and the anxiety levels rose exponentially. I then said, "Mom, I was going to not tell you about this until it was all over. Do you think I should have done it that way"? She replied, "I wish you had not told me till you got home from the clinic!"

My loverly partner was working partly out of town for days at a time and I kept it hidden from her for months. One day there was a message on the answering machine from my Cardiologist which
she just happened to overhear that revealed my secret months before the surgery and I was sorry they ever called and blew my cover.

I thought of support as a dividend, if I got it. But the anxiety, fear, anger, denial and all the emotions my family went thru for what I considered at that point a welcome relief, was not worth it.

For my money, I wish I could have hired a nurse as I planned to go with me to Cleveland and back in 3 days. That would have been all the support and expert at that that I would have wanted or needed.

As I said, it's a bit different take on it and I understand what you may desire, but the most important person in this thing is YOU. And you have to be strong whether or not, no matter what that knucklehead of a husband is for you.

Get your support from your own inner strength if you can, and some 'team' spirit from those of us who have gone before you. If you're in my area to have the surgery I'll be happy to visit you in the hospital or just e-mail.

What I found from my own experience with my own people was I had to Support them!

 

[NancyMVP]

Everyone makes alot of good points.

I have to say that Gary hits it on the head. Some people want everything to revolve around them.
Its really sad that the people that supposedly love us can't deal with reality.
I do know that my health is more important than his selfishness and fear of the unknown. Doing nothing is not an option.

After coming home from the hospital. I remember not feeling much better. I started reading up on Mitral Regurgitation and was worried because I was uninformed from my doctor. About a month later complaining about pains. I went to my internest and he said go to Lenox Hill Hospital in NYCity and see a particular cardiogist there. I had a dalium stress test and stayed one day. He agreed to continue have the echo cardiograms every 6 months.

"I TOLD MY HUSBAND THEY HAD TWO OPPORTUNTIES TO DO SURGERY" they are not knife happy and they aren't going to do it till its necessary.

Billy I hear you loud and clear. Luckily we found out early enough to monitor my situation. I'm sorry you lost your wife.

I think when push comes to shove he will have no choice but to support me.

Meanwhile I do have an appointment to see my doctor on Monday.

 

[Scottie]

hi Nancy

hi Nancy

Nancy ..I was sorry to read of your problem with your hubby but I am sure if you have a good marriage that this is not because he doesn't care ....what some of the others have said is true ..everyone reacts in different ways ..
I was born with Congenital Heart Problems and people have reacted in different ways over the yrs ...my mother wrapped me in cotton wool which caused some major problems when I hit the teens ...my father (who was great ) just tried to keep the peace ...my sister blamed me for having CHD...she said "trust you to have something to give you more attention"...and although we are great friends now ..she still thinks surgery is no big deal ...well my thoughts are ..no it's not a big deal if it's not you ...but if it is ...it's scarey...However one night she told me that she was really scared about anyone she cared about dying.
My hubby worries so much that when I went in for my angio I didn't want him to come with me ...and poor thing I think it was agony for him ...he really is scared by anything medical ..even ER on the TV LOL....but when it was over ..he was great and was all I wanted around ...I thought I could shut him out to make it easier ..but I need him .
I hope your husband will come around ....does he feel swamped by all the extra work he will have , is he scared of being left alone, sometimes I think the men can feel that Heart problems go on for ever and they just want it over ,finished ,cured .
I hope things work out .Let us know how you go !
Scottie

 

[JenniferO]

Nancy:

I agree with Scottie; I think you need to have a real heart-to-heart with your husband and find out what really he is so frightened of that his only defense is denial.

I had MVP with severe regurgitation. I have known about my heart murmur since I was 19 years old ( I am now 50). When the cardiologist told me a year and a half ago that I needed surgery within 6 months, I thought he was alarmist. I was in denial. I made the rounds of the cardiologists and surgeons over the next year and a half. Gradually, beginning last August, my physical symptoms started to signal me that they were right, and I became convinced that I needed surgery.

The final decision that we should travel from Salt Lake City (where we live) to Cleveland Clinic (where the chances of repair were much higher) was an agonizing one and one I definitely needed my husband's support to make. Further, my husband's support during the trip and the two weeks we spent in Cleveland were something I absolutely could not have made it through without.

You need your husband's support, unless you have got a really good friend or relative who will take his place. You do not want to do this alone!

If your husband wants to talk to my husband, please feel free to send me a private message and I will supply our e-mail address.

The echos and TEEs supply a measureable baseline that tell you when surgery is necessary. I also have a professional journal article written by the Mayo Clinic surgeons which reviews the measurements and the importance of doing the surgery early which I would gladly forward to you if you think it would help. Your husband needs to get educated on the technical aspects of this surgery instead of hiding his head in the sand because he would prefer not to deal with it.

None of us wanted to deal with it when we were told either, but once you get over the shock, you get educated and you do what you have to do! Knowledge is power and for the emotional parts, well, you have to lean on other people, like the friends on this website.

 

[NancyMVP]

Hi Jennifer,
How you feeling since your surgery?
I had a TEE in October of 2000 and a Dalium Stress test in November of 2000. I had my last echo cardiogram in January. There has been no change since the previous one. Or from Oct. of 2000 as well. So the medications must be doing there job.

The tests show that my ejection fraction is normal and my heart is not enlarged. Any change will mean surgery. Repair hopefully.
I'm in New York City so I'm hopeful to be referred to a doctor here in New York when the time comes.

I have moderate to severe regurgitation of the mitral valve. I also have mild tricuspid and trace pulmonic.

Until I did my own homework I didn't understand what the doctors are looking for as far as needing surgery.
I see the cardiogist every 3 monhts and get an echo every 6. Its all cause i make the appointments and do it. The doctors don't call me. Also I don't really have any symptoms. Except fatigue sometimes. But I'm pretty active. I have 3 flights of stairs in my house and go up and down often. I remember my son having an asthma attack and him having trouble climbing the stairs.
Also back in 2000 before they gave me medications I did have some trouble sleeping but now those symptoms are gone.
They funny thing is even when they give me the clean bill of health for the next 6 months. I can't really get it out of my mind.

My husband is a strange cookie. Some people just don't respond to things in the way "normal people" do. I've been through similiar stuff.
He knows I'm taking these medications. I've shown him literature on the subject. I think this is how he wants to deal with it.

I will keep the offer to have your husband talk or write to mine in mind. But I don't think at this time it is necessary.

When I was in the hospital in 2000 he was there for me. He ran himself down running to the hospital. He brought the kids to see me and stuff too. I know he cares but he doesn't deal with issues like these in a good and expected way.

The whole reason I got upset was because I had some weird feeling in my foot and when I mentioned going to check it out. Hes think "surgery". He went into panic mode. As if anyone can walk in a say to doctors. Give me this operation cause I say I need it. It doesn't work that way.

 

[Ross]

We are not your husband, but we will certainly support you to the best of our abilities. Of course you know that, but it doesn't hurt to remind you.

Your body does give off some weird signals with these problems. I don't know that your foot has a thing to do with it, but if it helps any, I have a small learjet engine idling in my left ear. The Doc's say that is from my severe aorta regurg. I guess we'll see soon.

Happy Easter!

 

[sylviayasgur]

hi nancy!
i'm so sorry you have to go through this. i think everyone here had a lot to offer in terms of your dilemna.
i agree, everyone deals differently and, even if they responded in one way the last time, they may react differently this time.
i wonder if your husband is so afraid of this and so numb because he realizes that the doctors don't seem too alarmed RIGHT NOW and that when the day comes that you need your surgery, that's when he'll worry or feel the fear.

i don't know if you've read my posts, but my husband joey had a ross procedure done 6 months ago. his 6 month echo showed a moderate to severe leak. he is scheduled to have a TEE on april 5th. when we found this out, we looked at eachother in shock. we both felt like crying, but the tears wouldn't come.
he gets depressed about this every day and i find myself playing the eternal cheerleader that i am.
unfortunately, i know that i am suppressing these fears and pain and disappointment until after the TEE results come in. i guess i feel we can't do anything now anyway, so why drown in my sorrows? i know it will all come to the surface on april 5th.

could this be what's going on for your husband?
i hope you both work it out together. stress and fear can do crazy things to people and as a result relationships.
fortunately for us, this whole thing has brought us so much closer (even though we were so close before).
i wish you the best of luck. keep feeling well. please feel free to email me anytime and i'll give you my number if you ever want to call.
all the best, sylvia

 

[NancyMVP]

to all
I really do appreciate everyones input and support.
I know someday I'm going to need all of you to lean on.
I really feel he chooses to behave in this fashion.
I just was so frustrated with his behavior.
I'll promise you this, I'll continue to take care of myself dispite his denial. I really feel he will have no choice but to do the right thing and it he doesn't at least I'm building a support network of friends and family.