Families and how they are affected

[Penny]

Hi everyone
I have a question, I know this may seem strange for me to ask (maybe not) how many of us that are having OHS feel guilt due to knowing the worry that our families are facing? I guess guilt isn't really the right choice of words but I have this sadness within me when I think of how upsetting it will be to my children when they see me in the hospital. Any thoughts on this from those who are facing surgery or the significant others feelings on this topic.

 

[Vanessa]

My hubby is the one getting the surgery and me as his wife have been a rec . Our kids are older and aernt showing any emotion at this time . 4months ago when we found out this had to be done I started doing research right away because I wanted to know every detail . I even watched alot of you tube videos of the surgery . Even with lots of info I still feel like the moment I see him in icu isnt going to be easy . I feel like talking about it helps alot but if your kids are young im not sure how much they will understand.

 

[Nancy]

Instead of feeling sadness, why not prepare your children for the happy time when you will be feeling better. You can explain that the doctor will be fixing up your heart and that in order to do that, you will have to be in the hospital and will be sore for a while until you heal up, but then, you will be feeling much better, and that you are giving them the gift of a new mommy. You could even ask them to help you do small things around the house, so they can participate in your getting better. Even little ones can do tiny things, and it can make them feel good to be helping you.

You, yourself, should be preparing for this and trying to not focus on the bad parts, but what lies ahead, and feeling better.

Too many of us, patients and family members alike forget that this operation is a miracle that didn't exist, not all that long ago. People with these problems died. Now they can be fixed up and have a good quality of life ahead of them.

 

[Bina]

Good question. None of us wants to put undue stress on our families, but hopefully the family can be understanding
and supportive during such a critical time in our lives. My husband was very quiet and inside he was totally freaking out.
At the time of my OHS my daughter had just started her new job as a Registered Nurse, which was exciting and helpful.

 

[Penny]

Hi Vanessa,
I can only imagine that if I were in your shoes I would be distraught. Maybe that is why I am feeling terrible for my kids. They are young adults but I can't imagine it being any easier on them because they are older. I guess my train of thought is that because they are older they understand everything that will be happening. It saddens my heart and I wish I could keep them from having to go through it yet I wouldn't want them anywhere else but by my side. I guess I am just being a mom and wanting to protect her babies from experiencing the nasty things in life, yet I know that is what will make them stronger.. silly me I feel as if I am all over the map with my emotions..

wow lots more posts, yes it is true I just need to focus on the positive or visualize the new me when it is all done. Was just wondering how many others felt the same
thanks everyone

 

[malibu82]

Hi there Penny!

I felt guilt (and still am) because of the fact I have to inconvenience family member lives for a few months since I need someone with me during the day while my husband is at work. I can not lift up my kids until my sternum is healed and knew this before the surgery. I had to make a "work" schedule for my mom, sister, and mother in law. They alternate to help me out. While they say they are happy to do it, I know what a major inconvenience it must be. My husband was the least of my worries. He said he wasn't scared or nervous because he said he knew I would be fine, if someone was going to make it through, it would be me. I was like oh well isn't that nice, I'm WORRIED!!! My mom never cried in front of me but I'm sure she did behind closed doors. In the ICU, I woke up and it was my mom and husband. My husband said he took a picture of me while I was still asleep. I saw it. Let's just say I won't be posting that one! I was very bloated and of course had the breathing tube in. My mom said in the ICU she was weirded out because the machine breathes for you. So my chest would move up and down when the machine made a noise. That was the freaky part for her. And then when my sister came in, she was really strong (she is 22 and we are very close) but at the end she starting crying saying its very hard for her to see me like that and she doesn't like it and she feels bad for me. I held her hand and told her I love you, you are you my best friend and that it is okay, I am fine. (i was drugged up!) So they will worry, but don't feel guilty. It is natural. You would worry for them too right? And it may surprise you. Family members I thought would be freaked out when they saw me, weren't. So it will be okay!

 

[Angel]

i know your feelings. i am the one who protects my family from hurts, dangers, etc. and here I am feeling like now I'm the cause of all the hurt. That kills me. I hate it for my family's sake, more than I hate it for my sake.

 

[ARGreenMN]

Not a strange question at all Penny. I had the exact same concerns. My kids are 23 (son) & 20 (daughter). I knew my son would probably be fine, but I worried about my daugher. My son never showed any worry (I know had some deep down - he hides things pretty well like ol' pops). And I know a lot of others were worried too (co-workers, family, etc.).

This may be a 'guy thing' that may not work for you at all, but my approach was to never let them see me worry. I'd downplay it, use humor, etc. Any time someone would ask if I was worried or nervous, even though I was, I'd never show it. I'd always say something like "actually, no, I'm not!". Or "I already know I'm gonna be fine" (used the 'visualize success' line on them, etc.). Told everyone I was gonna be the bionic man afterwards, stronger, faster, smarter, etc. And I think one thing that helped my daughter (and this might work for you even if the above doesn't) was for her to see those videos of Dan from England. I made her watch a couple of them with me after I'd seen them. And I kept saying things like - see, it's not gonna be that bad, I can live with a scar like that - it's nothin'! And look, he's not in much pain at all, etc.

Now, I will say I heard later that my daughter teared up when she heard about me struggling on the ventilator tube. So my advice would be - only let the 'strong ones' in to see you until you get off that, and have them report back to the others. Even if you don't struggle with it like I did (which you most likely won't because most don't wake up until it's out) it still looks kinda scary to some people. Since they only allow a couple people at a time to come in and see you while you're still on that, plan beforehand for only one or two really strong people to see you, then go back and 'downplay' it to the others. My daughter didn't see it, but when someone reported to her and others that I was really struggling with the tube - I guess my daughter freaked out a little and started crying. Once I was off that, and my daughter came in and saw I was fine, and looked pretty much like myself, she was much better, and has been great since (and she was studying for finals during that time - which I felt hugely guilty about).

 

[katie1234]

My mom told me she felt a lot of these feelings about the way her surgery would affect my brothers and me (she had it three years ago when we were all in our early to mid-twenties). She was really upset about it and apologized to me that I had to see her go through this. I wasn't surprised that she would feel this way, because she always thinks of her kids before herself and wants to protect us from difficult things. I found it really touching that she would feel this way, but I also wanted her to focus on herself and trust that my brothers and I would be okay. I was honest with her and told her that I didn't want for her to have to go through this, that I felt sad when I knew she was uncomfortable, that I was nervous and upset about the way she looked in the ICU (I told her this last one several months after the surgery), but that the thing I felt the most was gratitude that this surgery exists, that they were going to fix it and she would be okay. I also told her that my brothers, my step-dad, my boyfriend, and others were all rallying together and that we all supported and loved her and each other. I told her that her courage in this inspired me and made me feel proud of her but that it made me feel good to be able to comfort her and help her, too. I was so happy to be able to help her before and after the surgery, as I felt like I could do small, tangible things to show her that everything was okay, that she didn't have to worry, that my brothers and I were okay, too. I never once felt resentment or anything close to it- I actually think it made our family even closer. I saw such unbelievable strength in my brothers and it made me feel so proud of them and so happy to be their sister. It was the first time we had to pull together as "adults" and I feel like we did a great job. Since then, when I worry about things related to my mom, I always know that I am not alone in it and my brothers and I are a team. My mom and I are closer than ever and she continues to amaze me every day.

Your question reminds me of the selflessness and desire to protect that I see in my mom. I hope you can take comfort in knowing that your kids are going to be okay and that they will rally together and you'll all get through this even stronger than you all were before.

 

[BarbJean]

With my son's surgery approaching, I have given alot of thought to this topic. Strange how it affects family members in so many ways. My husband doesn't say much, but I know inside he is worried. My daughter hardly mentions it at all, but I think she is blocking it out. I am having mini panic attacks here and there, but pretty much doing OK. I just wish I could change places with him and have it be me having the surgery. Penny, you sound like a wonderful mom and that's why you are thinking so much of your kids at this time. When is your surgery? I will be thinking of you with very positive thoughts.

 

[Marguerite53]

Totally a legitimate question and concern. You are feeling love and all that that emotion brings with it. I am 4 years out from my AVR and whenever the surgery gets talked about with people who have just met us it is very clear to me that my husband was very affected by it. Our 3 children were grown, also. Youngest, the daughter, was in her first year of college 2000 miles away. Instead of letting her enjoy her first spring break, my husband asked that I schedule my surgery then so she could come home and hang out with him. They are two peas in a pod, you see. She balked and whined, but understood. As the years have gone by she has confided in me that she was very, very glad that she came home to be with her father. My oldest, a son, and probably my closest, was (is!) in grad school 3,000 miles away and we told him not to come. He was completely freaked about the whole thing (Virgo, worrier by nature) and I remember having my husband stick the cell phone in my face as soon as I was even remotely audible to tell my son that I was fine. My middle child, second son, planned to come "relieve" my daughter when she went back to school and so he knew that he was on board to help me after the surgery. I think, actually, that is very useful. Try to give each child a job in this. If they don't have to be left dangling in emotion-land, if they have something they know they are going to be needed for, I honestly think it helps them sort through it all. Instead of worrying about you, they can worry about pleasing you. Does that make sense??

I was the eternal optimist (still am!!) and really did not have any worry about the surgery. Sure, there was that infinitesimally small possibility that things might go badly, but I just knew I'd be fine (kind of like I knew I'd be fine with each pregnancy -- and was). Kind of a cocky confidence, I guess, but that's me! I will say, though, that after I said my good-byes in the hospital and they wheeled me away on the guerny I was totally overcome with a sadness I have never known. I recognized this as possible fear and lifted my head up to look around for something, anything in that bleak hallway to cheer me up or take my feelings away. I found an ancient emerald green exit sign and just focused fervently on it. The color, the practicality, the age and mellowness of its design. For me, that's all it took to kind of "snap me out of it". Of course, to this day, if there's an exit sign anywhere -- I see it!! ;o)

I love your avatar photo! I am still years away from that "look" (I'm assuming that's the Grandmother pose) but will be so excited when the day(s) comes!

Lovely to have you in this wonderful community. Ask us anything!!!

Best wishes

Marguerite

 

[Lynlw]

You've gotten alot of good advice so far. I've gone thru many heart surgeries as the mom and a heart and aortic annuerysm as the daughter. My Mom lived hours away and it worked out better for my parents, if I waited to take time off and come up after she got home to help her with baths ect and give my dad a break. My advice is to be honest, first tell everyone how great success rates are for 1st time surgeries, but it is pretty common to have bumps and the doctors and staff have seen everything and know the best way to help with any set backs that come up.so if you have one they don't automatically think the worst. The other thing, for people that will be with you right after surgery, the more they understand that you will probablybe still on thevent and why, that you will have chest tubes draining, there will be lots of IVs and lines and it is all normal and there is also a chance when they first see you, you might be bloated. IF they know what the different things are for and expect them, even tho it is still hard, they will be some what prepared. Giving everyone jobs is a great idea, and since you have so many people who want to be with you, someone can be in charge of making a schedual so a family member can be with you as much as possible and act as your advocate, walk with you, make you do your breathing excercise, make sure you get your pain meds on time ect. It may sound like it is a problem for the family members, but honestly they probably WANT to do something to hlp just don't know what.
Its funny/weird, I had already gotten my tiny baby /small child thru a couple of really complex heart surgeries by the time my mom had her surgery so i thought, nothing could be worse than seeing your child suffer, but all of a sudden it really hit me, I think it was the realization even tho my Mom would do ok, that at some point I would lose her. With my child, I always just plan that he will out live me so that hit me hard.

 

[Penny]

Do you ever stop and realize that you are exactly where you are meant to be in life? I am having one of those moments. The realization that I was meant to be here, on this site, and walking down this path with all of you. Thank you you are all truly an amazing group of people.

My children and I have had to experience a fair amount of loss. I guess that is why I am acting like a momma bear trying to protect her cubs.

Andy & Jackie, the ventilator is my biggest concern that my children will have to experience. I have tried to discourage them from coming on the first day for that reason alone. I have told them what to expect but know they need to make their own choices. I guess I just need to let them know that it is ok if they wait till day 2.
Marguerite, my avatar is not of my grandchild so to speak. I am like his surrogate gramma to him. I love him to pieces, he is now 11 months old and quite the little comedian. Good news is that my daughter is pregnant and I will be a real gramma in December. I'm so excited.

Needless to say I could keep going and responding to everyone's comment but this is getting a little long winded. I truly appreciate you all and feel a huge amount of comfort knowing that I am not alone on this healing journey... Big Hugs!

 

[Mentu]

Penny, there is no denying that a major surgery effects the family and friends who are close to you. I am the oldest of my brothers and first cousins. In my case, it is possible that some of them share this same problem but because they are younger it has not yet been identified. As the result of my experience and my being open with them about it, they now have some warning that symptoms should not be ignored. This is a warning that my Grandfather (who died at 48 when I was 4), my Uncle Paul and my Uncle Bob never had. Recently, my youngest brother was found to have a heart murmur but this is now something he and his Doctor can monitor with perhaps more care than otherwise might have been done.

Penny, you and I and all of our companions here in VR might best look at how our surgery touches our close ones in just the way surgeons approach a patient. A surgeon inflicts a wound but with the knowledge that the direct result will be healing. It is not you, not us that cause our family and friends distress but the situation of our disease. Fortunately, it is a situation that in almost all instances will result in us being with our families for years to come. To help those around us, I think it is our responsibility to remind them of this. Surgery is not the terrible thing that is happening. The terrible thing that has disrupted our lives is an unhappy combination of biology and chemistry that damaged our hearts. Surgery is not the dark shadow in the corner but our doorway into a better future. Penny, who would not choose to walk through that door?

Surgery disrupts the lives of those to whom you are close but it also spares them the grief of watching you die an early death. I never really knew my Grandfather but I have felt his absence all of my life. My Grandmother died at 88 and, though I morned her death, I have many years of wonderful memories and as I grow older an appreciation for what a wonderful wise person she was because she helped shape the person I have become. Surgery doesn't just mend us; it also heals those close to us. Is it not worth a few weeks or months of inconvenience to ensure that you are a presence in their lives not an absence?

Larry

 

[Luana]

It is a miracle that this can be done, and with so much safety. It may be a bit overwhelming when your family first sees you in ICU, but everything that looks and seems so scary is keeping you alive. I think Karl had posted some pictures on his Member Page of himself after surgery. You might want to take a peek at those and maybe let family who'll be seeing you right after surgery see them, too, so they have a better idea of what to expect.

I don't know how common this is at other hospitals, but the hospital I was in has volunteers who've had valve surgery, meet with family members during the surgery to give them an idea of what is going on and how the recovery will be as they have the personal experience to share. I met with a volunteer who had had an AVR when I went in for my pre-op stuff, in fact, she was the first person I talked to. This was very helpful to actually meet someone in the flesh, because other than the folks here I don't know anyone who's had a VR.

 

[Marguerite53]

I can understand your concern about loved ones seeing you on the ventilator. I have a funny (well, maybe) story here. My father had a triple bypass 6 years before I knew I would even need my surgery (cardios had always said I'd probably be in my 70s --ha!) He actually called the doctor saying he thought he might be having a heart attack (silly dad) and drove himself to the hospital!! My daughter (then a child) stayed all day at the hospital with me while Gramps was in surgery (obviously this is her role in our family!!). The Chinese surgeon came out to tell me that everything was a success. I thanked him after our meeting and turned to go. He said, um, whoa.... you need to go in and see your dad. My daughter could not go in to the ICU and I had a dilemma but this man insisted that I go in and found a conscientious person to stay with my daughter. I guess I was nervous -- much as I adored my father I really didn't want to go (I'm an only child and he was divorced and single). I'm not a Florence Nightingale type at all. But there wasn't much I could do, was there? His surgeon was pretty much telling me to get my butt in there!! He (the surgeon) explained that only loved ones can bring out the magnificent healing powers that may lie sleeping in a newly operated person -- or something like that. Really. He was very brilliant and adamant about the "other" things it takes to keep us moving forward. Okay, so in I go in to intensive care. Scary!! So my dad is on the ventilator. Weird. How's it going, I say sheepishly to the nurses. Well, they start complaining that he keeps chomping down on the tube and they're having the darndest time getting him calmed down so that they can wean him off the thing. Well, I shake my head and say.... look. The guy has smoked a pipe for 70 years. It's always hanging out of his mouth, lit or not. He thinks that tube is his pipe!! He's not going to stop chomping on it!! So immediately they start talking very loud to him about how that is NOT his pipe!! After a few minutes (and some more gentle coaxing from me) he stopped chewing on the ventilator tube.

Well, anyway, there's a story you can share! I think your family are gonna find things a little scary. That's okay!! They'll get over it! It won't last for long. Their being there with you could help you get out of there faster!

One word of caution, though. You will look very gray. Very. They will have the sheets wrapped over you tightly and you'll look sort of lifeless and very flat. That is normal!!!!

Congrats on the Grandma to be news!! You look like a natural!

Marguerite

 

[Penny]

Penny, you and I and all of our companions here in VR might best look at how our surgery touches our close ones in just the way surgeons approach a patient. A surgeon inflicts a wound but with the knowledge that the direct result will be healing. It is not you, not us that cause our family and friends distress but the situation of our disease. Fortunately, it is a situation that in almost all instances will result in us being with our families for years to come. To help those around us, I think it is our responsibility to remind them of this. Surgery is not the terrible thing that is happening. The terrible thing that has disrupted our lives is an unhappy combination of biology and chemistry that damaged our hearts. Surgery is not the dark shadow in the corner but our doorway into a better future. Penny, who would not choose to walk through that door?

You are so right Larry. I know this is not something anyone wishes for in their lives but the reality is that it is happening. There is only one choice to move forward and put it in my past. This surgery is what is going to keep me on the right side of the grass and ultimately that is the only thing that is important right now.
I am glad that your dad's surgeon insisted that you go and see him Marguerite. I actually remember once when I had my daughter in the hospital and they were going to do a spinal tap on her. (She was 5yrs old) The pediatrician told me you can come into the room while I do this or you can stay outside and wonder why she is screaming. I knew at that moment I wouldn't want to be anywhere but by her side to comfort her as best as I could. I know without a doubt my kids will be the same and want to be with me. I am blessed, truly blessed and need to focus on that. Funny how our minds can so easily lose sight of the positive. I should know better myself... silly me

 

[Julieaka]

Great posts - all - I had not thought about who to let in the ICU - I will work on that - did anyone let younger kids see them in the hospital??? post ICU/chest tubes??

 

[sue943]

I felt, and still do, feel rotten about my poor daughter. She had just started a new job then a week later I had a stroke, then my mother died next day. Fast forward a couple of weeks and I had been airlifted to England with endocarditis with my mitral and aortic valves getting into a serious condition. Fast forward a couple of months then I had my replacements done two weeks before her wedding, then discharged on the Sunday, taken ill on my way to their home, admitted to hospital on the Thursday with complete heart block and it was her wedding day on Friday. The poor girl had no opportunity to get pre-wedding jitters but it isn't recommended to have your mother in such a state on the lead up to your wedding day, nor almost dying on that day! To this day I think that it being her wedding day probably saved my life, I was determined NOT to die on her wedding day, it would have ruined her anniversaries.

 

[hensylee]

yes, you will be upset if you see him right after they bring him to icu - (my son was and he was a full growed man), but when you see him next he will be himself, tho groggy, and you will be so happy that you'll forget the first visit. Once out of surgery, just remember that he's on the way to becoming what he used to be. Blessins.........