"I'm too scared to lose you."

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themalteser

Well-known member
Joined
May 25, 2010
Messages
299
Location
UK
So my wife got a bit tipsy yesterday and so to speak, she opened up to me saying that she is too scared to lose me for this condition on the operating table! Whilst crying; WTF? She never talked like this in 7 years I known about my condition and always told me you're exaggerating etc. etc. What on earth!!

Anyone had a similar situation in the past and how did you deal with this? Firstly I was trying to reassure her that everything will be just fine, but hey, I was talking about myself and that definitely did not reassure me :) I feel it's over for me at a young age now.

Not sure whether to laugh or cry! What I know is that she watched Chicago med the day before; maybe there was something in there that got her thinking! :)

Thanks all.
 
I have not had this happen yet, but I am hopefully years from needing surgery. I one of expect that it WILL happen, though. My wife is definitely one of those "put on a positive face", "walking by the graveyard whistling" types. There's nothing wrong with that -- she's a great source of strength to me -- but every now and then there is a crack in the presentation and you can see that she can be far more worried than you'd think.

I think it means that she cares about you more than it means that you are hosed, though. What exactly is your operation for? If this is valve replacement, you know that dying on the table is much less likely now than it was even ten years ago.
 
Hi

My wife was Finnish, and they are stoic, none the less I knew she was a mess when she heard about my need for surgery. She knew I'd had two before, but there was something different when it's before your feet.

I basically talked through it and listened through it and made sure she had our friends around us when I was due to go in.

It's a point I make often that the surgery is not just hard for you, it's hard for your family and those who love you too. It's easy to focus on the fact that's it's you and miss that it's then too.

She had a birthday party to go to after I made it back to ICU and most of the women there were good solid supportive women. So that was good fortune. She stayed with them that night, so she wasn't alone.

I think setting up a network for supporting her is perhaps more important than you.

Best Wishes
 
Thank you .

My surgery, when I ever need it will be for the aortic root replacement and possibly valve if it starts going south. I think statistically speaking, the risk of surgery is low. My wife was talking about that she seen somewhere they will cool me down for 20 minutes or so, but I thought that was for aortic arch surgery?

The problem with me talking to my wife's concerns is that I start getting anxious and she ends up trying to reassure me about her thoughts, so I'm probably a bit useless to try and reassure her. All I was hearing yesterday was basically that she believes that I will die! (I was happy watching a good film at the time and her conversation came out of nowhere!) She also said that I was "made" wrong and that I am not normal, because of this condition and my anxiety etc. that is why she sees me so unhappy all the time and its not fair on me. Great! But I was simply listening to her.

True, surgery effects all loved ones and I suppose this has took me by surprise, because I focused too much on myself during the last few years, forgetting that actually my wife is probably going through some challenging times, especially with my moods. A network will help, definitely. I'll talk to a good friend of hers.

On a note of paranoia, it is scary when you feel that your loved ones have stopped believing in you! She didn't come with me to one appointment before, because she felt its not necessarily and that in a way, was an encouragement for me. I don't know why now! I've asked her and she simply said because she loves me and the thought of her being without me makes her feel sick!
 
Hi malteser - the heart is cooled down for aortic valve surgery, not sure about aortic root surgery, I read it on my Operation Note. It's cooled down once it's been exposed to stop the heart beating for the duration of the work on it. As well, the cooling, I believe, might be wrong here, protects the cells of the heart which would otherwise start 'dying' once the heart stops beating. Once the work on the heart has been finished it's "re-warmed" and started up.

My husband has only ever come to two of my appointments, BUT that's becasue I/don't want him to come as I think he would be more upset/worried about me than I know he is, plus I don't want to worry about what I say in a consultation, I don't want to end up 'protecting' my husband from my worry/concerns. So I like to go to any consultations on my own. The first occasion I asked my husband to come with me was when I first saw the cardiac surgeon - I had thought it might be useful for him as he might have found out from the surgeon what he could do for me post surgery etc. In the event it was most useful as the surgeon was so rushed she wouldn't answer my questions and was most abrupt - my husband was a witness to this so that when I complained to the cardiologist he knew I wasn't being paranoid as my husband came to that appointment and verified the surgeon's attitude !

So yes, our partners definitley do get worried and stressed - this is addressed very well in Carol Cohan's book 'Coping with Heart Surgery and Bypassing Depression'.
 
I don't like to psychoanalyze anyone let alone someone I've never met but maybe she's been hiding the stress she feels about the situation and put on her game face for you? Then the dam broke.
 
Hi Paleogirl, thank you for your post; I did not know that heart is cooled; there is also a total circulatory arrest? Literarily doctors cools down the whole body to around 14 degrees, but don't use bypass? I'm sure that's for aortic arch repair though. I'll look for the book by Carol you mentioned.

Cldlhd - I genuinely had always believed that she really thought my condition is not that bad and that I'm exaggerating etc. You are right, she must have been hiding the stress all along and all came out yesterday, as in fact she told me yesterday that she was never going to admit to me she gets worried, so I wonder how long she felt like this.

For me this struck me in two ways:
1. I hate seeing my wife worried, I don't like it at all, it's like in a way I feel guilty that she is with me, I've put her through a lot of worries already and this won't get better if I'm ever told I need surgery in future!

2. Just like the issue I mentioned with the book (earlier post) I feel and I know it's terribly stupid, that for my wife to be worried, then I should be really worried! I am gutted, in a way, because I don't want her to worry, it's something else for me to worry about and this is very selfish indeed! For me she used to be reassuring when I'm having racing thoughts on surgery and I ask for her opinion; she shown very little empathy and simply helped me see beyond my thoughts and feelings. Now, however, I learned that she has exactly the same fears! So I cannot have reassurance from her anymore, because I cannot trust her reassurance anymore.

Or maybe I am thinking too much again.
 
When I get medications, one of the printed pages that I get says something like 'your doctor has determined that the benefits of taking this medication are greater than the risk of side-effects."

You can almost apply this risk/benefits analysis to your surgery: the risks of not surviving the surgery get greater the older you get and the longer you put it off. Before I had my surgery, I asked my doctor 'how sick to I have to be before I have the surgery?'

Today, the surgical risks are lower than they were when I had my surgery 25 years ago.

There are many benefits of having the surgery:

You will feel stronger
Your blood flow will be much improved (maybe even better than when you were a child)
FWIW - sex will probably be better
You will have more endurance.
If you get a mechanical valve, you may be able to live the rest of your life without the need for additional surgery
You'll reduce the ongoing damage to your heart that occurs if you have a bad valve and wait to make the decision to have surgery.

Yes, if you get a mechanical valve, you'll need to take warfarin for the rest of your life (or until something else comes along) - but you'll see from the posts on this forum that this doesn't have to be such a big deal.

I think that if you put it into these terms - for yourself and your family - that you'll be better and stronger AFTER the surgery and that the surgical risks are relatively low - the decision to get this damned thing repaired may be somewhat easier to make.

And, as others have said, we're here to support you.
 
It's totally normal to be afraid when having ohs but don't let it eat you up. I had my surgery in February 2015 and while I still think about it and at the time it was probably a bigger deal then it seems now. I feel great and getting ready to take a walk on the park right after I post this, beautiful 70 degree ( Fahrenheit) fall day here, my favorite football ( American) team won. Point is you may need surgery one day but you'll get through it.
 
It's not something discussed so much but I think our issues and especially surgeries can be very hard on our significant others. If the worst case happens and we don't survive, our problems are over, and the problems for those we leave behind just begin. For this reason I think it is helpful for our partners to be informed about our conditions and the risks, low as they are, and to meet with the Dr's at least once. My wife came to one or two meetings with my surgeon and I think that was helpful for her. It was also helpful for her to have company while waiting through the surgery.
 
Malteser - Welcome to the roller coaster of diagnosis long before treatment. I've been on that ride several times for different reasons, and am on it now (non-heart-related). Your emotions may vary greatly from day to day, with some days being almost "normal" (what's that?), and others being total disaster. That's what the unknowns do to some of us, the more sensitive ones among us.

On my current journey, most of the time my wife is the "Suck it up. You'll get through it fine." type. She is usually the one to be rock-solid, not showing emotion, not showing compassion. She loves me all day and night, but it often doesn't show. But every now and again, she will do or say something that just drops me to my knees with emotion. She doesn't show it very often, but when she does show it, I know in every fiber of my body that she is there for me always. It could be that you are as lucky as I am, and that your wife only lets her guard down when she feels that you really need to see how she really feels.

Serious medical conditions can wreck havoc with your emotional stability. I know. I've been there before, and I am there now. Remember, there is no shame in seeking help. The only shame is in wasting part of your life when you could have been helped yet chose not to.
 
When I had my surgery, I clearly remember being so very grateful that I was the patient and not the caregiver!

I was more concerned about my husband than I was about myself, and he never said that he was concerned about me, but I just know that it has got to be tough waiting around not knowing what's going on during the surgery.

My husband and I grew even closer during this time, and we were pretty close already.

Special thoughts to you and your wife during this time – I think it's times like these that give us a chance to really experience what is truly important.
 
My wife has always been a pillar of strength for me and our family. I learned about my condition and that I would eventually need surgery while we were still newlyweds and she stood by my side and didn't abandon me. We had our teary moments, but she never really lost it in front of me.

The day of my surgery, we were both nervous but calm. She and my mother were walking alongside the gurney as they were taking me to the O.R. The nurse said they couldn't go any further and needed to say goodbye. I kissed my mom and then I gave my wife a big hug and kiss and handed her my wedding ring that I still had on. I told her that I would be coming back for that. It was at that moment she lost it and couldn't stop crying. Who know, maybe she thought I was going to come back as a zombie for the ring :) My mom had to convince her to let me go and that everything would be alright. It wasn't until that moment that I realized how scared she actually was for us.

As others have said, this process can be very taxing for our loved ones, and can even make the strongest person want to sit a corner and cry their eyes out.....but they won't, because they are trying to be strong for us. And for that, I will always be grateful to my wife.
 
Hello - this is the thing, because cardiologists waters this condition down, they make you believe that it is not serious, but 'Googlemed' says otherwise! In regards to my wife, we had another chat and she said that she was searching about my condition, reading abstracts and research papers in terms of mortality/morbidity and that she has been doing this for quite some time without me knowing! She gets annoyed when she find out I was reading about my condition over the internet and she was doing the same!

The things is, over here, in the UK, I don't think there is anywhere we can go to meet up with people who are going through same problem and who may need some support in being educated about the conditions, risks etc. The hospitals cardiologists have very limited time to sit down with you and go through your questions/concerns - They leave you with millions of questions in your head, but no answers.

Epstns – I hope that you are well and that what you’re going through is nothing serious. This is a roller coaster and emotions do vary greatly. I have no idea what the trigger is, but last night I dreamt about going through surgery, so I woke up researching about mortality rates. I dreamt about it for no apparent reason at all, simply dreamt about it! Although it was a very, very (double very) weird dream; basically my surgeons suggested wrapping my aorta with my manhood skin! What on earth is that about? So the surgeons needed to remove my manhood to take the skin off and wrap it around my aorta!! I recall running away and two surgeons running after me to put me to sleep! (It was a nightmare). The brain is very mysterious thing, if there is someone with the ability to interpret this, you’re very welcome! Or I have underlying mental health issues, one of them!

This condition does take its toll physically and mentally and I learned that it also does on my loved ones! I thought I’m getting better in managing it as in fact I posted before, but this opened up something else now and I am again re-learning to not letting it eating me up as you said CLDLHD. Your post is an encouragement to me as you went through surgery and seeing you’re back to normal activities etc., gives me a lot of reassurance.

Protimenow, I thought many times to get it repaired now, so I can put it at the back of my mind and stop worrying about it and upcoming surgery etc. I talked to Tal Golesworty and to Professor Pepper, who both said that I could be a good candidate for surgery, but they needed me to get a referral from my cardiologist. My cardiologist, however declined his referral and said that at 46-47mm it is worth waiting as I may not need surgery for a very long time or he keeps mentioning, could be never! . I do trust my cardiologist and in a way, his suggestion was a relieve, however at the same time I was disappointed as I genuinely wanted to get this done and to get it off my mind!

Marc Kowal – your post given me goose bumps! I vision myself doing the same thing with the ring and seeing my wife and kids in the same state whilst reading your post, its emotional!. I think I will tell my surgeons that I don’t want surgery and resist it completely!

What did you do after? Hope you don’t mind me asking, but were you upset and questioned what if? How did you feel? I like to hear the detail, if possible as I keep thinking, for example, what would I do when they are putting the IV in etc., I do not know how to react, I may get very aggressive/upset/run away! I don’t know. What about you CLDLHD and others who went through this surgery? Also, did it felt quick when you woke up? Did you know what just happened? I am sorry to ask all these questions, perhaps I need to put this on another thread.

The thought of my family problems starting and mine ending, like you said AZ Don, is a horrible feeling. I mean I wouldn’t know, but its true, they will be in hell and I hate the thought of them without me in a selfish way! But hopefully, it won’t happen!! I don’t want it to happen, I got things I need to get on with life, I need to see my kids grow, my wife and I getting older, I learning new things and travel together. Why the hell I’m always thinking about dying, death, death, death!!!


Rachel – it does make you grow closer with loved ones, but at the same time, it makes me feel every now and then, what the hell I am doing to them. If it’s not the condition worry it’s about me being anxious and ‘on edge’. They try to get my attention, during weekends and my head is in planet aorta or planet death so I get irritated that they are almost interfering with my thoughts and then I feel guilty and get myself in stuck in a cycle.

Lastly I will be grateful to you if you could guide me through a good source of information on mortality/morbidity rates with someone at my 47mm aortic root size etc./ surgery outcomes and more?
My promise to you is that I will give my wife all my log in details and if I ever need anything done, she will keep you updated, plus, I know how amazing you all are in supporting/educating and simply listening to concerns.

Thank you all very, very much for contributing your thoughts. Wow, sorry, its a long post.
 
themalteser;n869383 said:
[The things is, over here, in the UK, I don't think there is anywhere we can go to meet up with people who are going through same problem and who may need some support in being educated about the conditions, risks etc. The hospitals cardiologists have very limited time to sit down with you and go through your questions/concerns - They leave you with millions of questions in your head, but no answers.
I’m in the UK and there wasn’'t even a forum where we could talk about things. The British Heart Foundation has a heart forum but it seems mostly to consist of those who’ve had only CABG or have had heart attacks, I ‘met’ only one bicuspid aortic valve person when I was on that forum. That’'s why I searched and found valvereplacement forum - a truly international forum :)

I know what you mean Malteaser about the cardiologists having limited time to talk with you. Some have more time than others but I’m very lucky in that I get Bupa health insurance from my husband’'s work and that it’s free, apart from being taxed. This has meant that I’'ve usually been given time for questions, except from the cardiac surgeon who was very rushed and wouldn’t answer my questions - my other consultants made jokes about surgeons when I complained ! Mind you, I’m sure there are some more caring, empathetic surgeons because when I couldn’'t get my questions answered a very kind cardiac surgeon at the Society for CardioThoracic Surgery answered all my questions by email, he was so kind. And then the anaesthetist answered some more the day before surgery.
 
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themalteser;n869383 said:
Lastly I will be grateful to you if you could guide me through a good source of information on mortality/morbidity rates with someone at my 47mm aortic root size etc./ surgery outcomes and more?

Every thing I read suggests that this the most successful surgical intervention in the repertoire of modern surgery.

Be VERY careful when reading Google, be VERY observant of important aspects like age, commodities, and general health at surgery.

Read the articles fully DO NOT just read the abstracts, for they are written with a different audience in mind.

Little current is written on general avr because it's so successful, you just don't get published rehashing the same old of "yes this works fine"

It works fine and you'll be fine too
 
When we found out I had to have surgery, my husband and I had been married for only about 10 months. I know he struggled leading up to my surgery but he didn't share a lot. However, the day after my surgery, he cried for a long time at my bedside telling me about how scared he had been (and still was) and how much he loved me. It was very hard for him! I think being the spouse is probably actually tougher- we just have to worry about getting through it, and they worry about so much more. I can't imagine how I would have dealt with it if my husband and I had been in opposite places and he was the one who had to have heart surgery!
 
Hi Paleowoman - I have private insurance as well, but I pay a lot of premium and I'm quite reluctant to use it until i really need to, as I will lose a lot of my NCB! NHS is very good, but so time limited, everything feels a rush and when I have my appointment, first I get the tests, height, BP, ECG and Echo then my cardiologist calls me and simply says, your aorta is pretty much the same as it was last year and I'll see you next year; but leaves me with questions like : What you mean by pretty much? Last appointment he left me alone for a moment and I was reading my echo notes from his desk (slap on my hands!) I read, dilated left atrium. So I though, why he hasn't mentioned it to me , so I couldn't hold it I had to say, I'm really sorry , I ready my notes from your desk and it says dilated atrium , should I be worried? He basically said it's nothing not worry about at all and explained that the radiographer don't know my history, height etc and have to report everything.I feel they get agitated when you have questions! It's all these performance measurements that are in place, putting real care under so much pressure! I then have to go to my GP with anxiety, so it's reducing time from one side and increasing much more the other side, does not make sense!

Pellicle, as always and as Marie said, thank you for the up beat! Can I pay for your flights and a hotel here, when they tell me I need surgery? :) I find your posts so reassuring, I go through them again and again, thank you, really for your time,I really appreciate it.

Jamieann - thank you very much for your nice post. It makes you realise how much we are important for each other and how much we love each other!
 
themalteser;n869383 said:
What did you do after? Hope you don’t mind me asking, but were you upset and questioned what if? How did you feel? I like to hear the detail, if possible as I keep thinking, for example, what would I do when they are putting the IV in etc., I do not know how to react, I may get very aggressive/upset/run away! I don’t know. What about you CLDLHD and others who went through this surgery? Also, did it felt quick when you woke up? Did you know what just happened? I am sorry to ask all these questions, perhaps I need to put this on another thread.

If you read the archives of the Post-Surgery forum here, you'll find many writeups from people who give detailed accounts of their surgical experiences. No two are alike, but if you read enough of them you'll get a good idea of what your experience might be. And you'll find that everyone was really scared but most people didn't find things to be as bad as they had feared.
 

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