Here goes!

[Gemma]

Hi everybody,
(not sure if I managed to post this message before so trying again!)
This is my first post on the site - I've been reading some of the stories and discussions for a while and think it's about time to ask for some advice.
It's actually not me who's waiting for surgery, it's my "significant other" - he's 26 and found out in March (3 months after we got together which came as a bit of a shock especially as we've been friends for 10 years but that's another story) that he has a leaking aortic valve - I believe that one of the leaflets of the valve is either deformed or missing. So anyway, we found out the other day that his operation has been scheduled for November 25th. This is a bit earlier than we'd originally thought - it had been suggested it would be December - but I suppose at least it gives him a whole month to start the recovery process before Christmas and buy some presents for everybody! (eBay has become his new favourite shop).
So, the problem is that we have two completely different approaches to this. I, being a bit of a control freak, want to find out as much as I possibly can about what will happen, whether I'll be allowed into the ICU to see him (OK I know he'll be sedated and not know I'm there probably but it's been bothering me a lot) and how long he's going to be in intensive care, hospital, etc, but he's still trying not to think about it at all. I guess this would be OK except that he seems to have some ideas which from everyone here at VR.com seem to be a little exaggerated - e.g. from somewhere he has decided he'll be on "life support" (the ventilator) for a week. I know everybody's different but this seems unlikely.
He has to go into the hospital the week before the op for some tests so I'll go in with him then to ask the questions which he and his parents seem not to have asked, but I just wondered if this mirrored anyone else's experiences, and if so what do you suggest?
Sorry this seems to be one long list of questions - guess I just need someone to set me straight as at the moment I'm feeling a bit overwhelmed. I also need to decide when to take time off work myself - I've got two weeks holiday left which I've saved for this and wondered if anyone could suggest when it might be best for me to be around? I should also point out that he still lives with his parents so there's someone at home for him but I'd like to be there too.
Oh, and we're in England so I suppose things may be a bit different over here but any advice will be greatly appreciated

Thanks,
Gemma.

 

[Ross]

Hello Gemma and welcome to the forums

It's always unsettling and overwhelming when the shock first hits, but the more you learn about what's happening, the shock soon fades away. I would suggest you read around in the forums and learn as much as you can possibly handle.

As for the surgery, yes you'll be allowed to see him in ICU and yes he'll be well sedated and may not even know your there. The first 3 days or so are rough, but nothing that can't be handled. He'll have drain tubes, vent tube, and numerous other things protruding from his body during this time. One by one they'll be removed and should be totally tube free by the 3rd day, possibly the 2nd. He'll be up and walking on day 2 if he's able. Unless he has some lung condition, he'll only be on the vent until he can breath for himself. This can be as little as a few hours or a few days, but most people are off of it in the first 24 hours.

If all goes well and he doesn't have complications, he should be going home in 4 to 7 days. He'll need someone to watch him for the first week home and the second week would be a nice bonus if you could swing it.

Just dig in and start reading, there is a ton of information right at your fingertips. Most everything I can think of has been addressed over and over again by different people. If you have more questions, just ask them. Nearly all of us have been through this already, some a few times now, and still more awaiting their turn for surgery. This should be enough to get you started. Were here when your ready with the next round of questions.

Again, welcome to the forums. I hope you stick around and help others that face the same feelings that your facing today, in the future.

 

[Gemma]

Hi Ross,
Thanks for that - it's good to know from someone who's been there that I haven't got my facts completely screwed up. And yes, I knew about all the tubes and stuff from the British Heart Foundation website (www.bhf.org.uk) but would rather see him covered in tubes than the alternative (which I suppose is the one thing we haven't talked about but are both scared of).
I will try to get him to come and read some of the forums either with me or alone before he goes into hospital so he's a bit more prepared - there's only so much a doctor can tell you and I'm sure it would be better coming from the horse's mouth so to speak. I guess he's expecting hospital to be worse than it will be and the coming home bit to be a bit easier than it will be but it's not a conversation that comes easily
Do you know how Shelley's doing by the way? I read her post about her SO last month and would love to know how they're both getting on now especially as they're roughly our age... If you're out there Shelley, please let me know.
Gemma.

 

[hensylee]

Hi Gemma - I think Ross has covered it all very well. Just tell your SO that he's going to be just fine and like a new person. It is truly a miracle, this surgery. He'll be up and around very quickly, as Ross said, but total recovery is quite a while, tho he will be driving again in about 4-6 weeks, so you have a yardstick to go by. He will be doing most things he has always done within a couple months, but limited in some things such as lifting. His body will tell him. As for you, take along something to occupy yourself at the hospital because the hours are long and boring watching him sleep. Both of you are going to be fine, I promise. Maybe you could tell us his name so it can be entered on the calendar? God bless

 

[Karlynn]

Gemma,
Welcome!!! You are going to come to regard this site as one of your best friends. I had my valve replacement 12 years ago at the age of 32. I knew so very little at the time about what was going on and what to expect. I am amazed how prepared the people on this site are, because of this site, when going into surgery and it makes me wish I had all this information, not just medical information, but practical information, when I had my procedure. Encourage your SO to read, or even post, here. I think the more you know, the less apprehensive you are. No one will try and scare him here. I think knowledge is power and the feeling of helplessness is something so common when going through this.

But there's all sorts of info to look up. One particular piece that I thought "Gee, I wish I'd known that", was about getting a good Lazy Boy chair, or recliner to sleep in for the first 2 or 3 weeks after surgery. It's been 12 years, but I still remember how uncomfortable it was to try and prop up pillows all around in bed in order to be comfortable enough to sleep. There's all sorts of great advice like that here.

Do some searches on key words, and if you can't find what you're looking for, then post your questions. People don't mind answering questions that have been asked before. And please, come here for emotional support if you need it. The folks here are the absolute best at giving it.

Bless you for being such a caring advocate for your SO. And welcome to the family.

Karlynn

 

[Gemma]

Hensylee, thank you - it's sooooo reassuring to be told everything will be okay. I know nobody's got a crystal ball here but it still makes me feel a whole lot better
My boyfriend's name is Jim (this seems to be a common name on VR.com so not sure what he'll call himself). I have suggested he should have a look at this forum and perhaps post a reply to this thread if he wants to.
Oh, and Ross - he hasn't got any lung problems that we're aware of so the ventilator thing should be straight forward if you can call it that. In fact in spite of his heart condition I think he's a damn sight fitter than me - it's a good job he'll take a few months to recover 'cos he's threatening me with a 20+ mile mountain bike ride already and I need some time to get fit
Anyway, I'm sure Jim'll be along later to introduce himself. Thanks for the tip about the recliner Karlynn too, it's something we'll have to look into.
Bye for now,
Gemma

 

[Georgia]

Hi, Gemma!

Hi, Gemma!

You know, Jim just may not be interested in dealing with this right now. There are those who are really aggressive in finding out everything they can about this sort of thing; and the others who figure there's nothing they can do to alter things anyway and who don't deal with it.

I tend to be a bit more of the second type, so I understand how he might feel. I wish I'd found this site prior to my surgery, but I kindof curled up into myself until I went to the hospital. I guess my usual reaction is to shut down.

He's fortunate he has you to run interference for him. He really does need a recliner, so you might want to take him out shopping for one. And a stool in the shower for the first couple of weeks. And really comfortable loungewear. And fruit and fruit drinks. And books and movies and other things that you can get without stepping on his mother's toes.

When to take your vacation? I wouldn't when he's in the hospital - except maybe one day the day of surgery. A lot depends on if his parents need help caring for him. If they're elderly or infirm perhaps they'd need you when he is wobbly and newly home. If they're hale and hardy, perhaps you could hold off until closer to Christmas and help him enjoy it - take him for walks and short rides, etc.

 

[catwoman]

Georgia:

Those are pretty good suggestions for Gemma. Wish there was a file under resources where someone anticipating surgery could download suggestions like these... or we could e-mail to someone.

Wonder why sweet things are always suggested? That's the only thing I could taste -- fruit, sorbets, etc.

One of my sisters appointed herself in charge of entertaining me for 2 weeks after I left the hospital. She rented or bought quite a few movies. Think we saw every wedding-themed film imagineable (The Wedding Singer, The Wedding Planner, My Big Fat Greek Wedding, etc.) because her dtr's wedding was coming up. Also saw Harry Potter movies, The Rescuers (now that's going back 20+ years), Men in Black 1 & 2, westerns, etc. One afternoon/evening we watched 3 or 4 movies back-to-back.

Maybe because I didn't have any appetite, I rather enjoyed watching The Food Channel.

 

[Nancy]

Hi Gemma-

Welcome to this wonderful site. There are many significant others here (myself included) who do all the research for our loved ones. Thats' OK, and it will come in very handy for Jim. You just sit down and read as many posts as you can. There is an overwhelming amount of information here and a lot to learn.

I posted a bunch of links which will help with preparing for surgery, Here's the link to those links. Just go to the bottom of the page and you'll see all of them. Lots of good ideas there.

http://valvereplacement.com/forums/showthread.php?s=&postid=54259#post54259

 

[ccrawford]

Geez - This time I didn't even have to summon our magical archivist with an incantation. I just thought "Here's another job for Nancy" and magically there appeared a thread link to all the threads. This is getting too spooky and mystical for me !

 

[Nancy]

It's just ESP. Works for me.

 

[Gisele]

Genna

Genna

You certainly are on the right board. This is a very active board and you will be able to get a lot of advice.

Ross gave you some good advice and you will find that everyone here is so helpful. When I had my valve replaced 21 years ago there was no support like this available. I didn't find out until 4 days after the surgery what that ticking sound coming from my chest was from!

Today, patients are more educated and have such an input into their treatment. Next week I guess I will see how much the medical community has advanced over the last 21 years. The valve selected to replace my mechanical valve is a bovine valve. The good thing for me will be that I won't need Coumadin with this valve. The down side is that I will be facing another surgery when this valve wears in 10-15 years.


Welcome! Gisele

 

[Granbonny]

Gisele

Gisele

Yes, but you will be skiing down the Mountain..while I have to sit in the lounge. drinking hot toddy's. I might fall down and go boom boom on my head.. downside on taking coumadin... But I will have you a warm one when you come inside by the fire. Bonnie

 

[Gisele]

Make mine..

Make mine..

a Miller Lite LOL, ahh, maybe I will try one of those southern hot toddys. Gee, ski and drink, what else can a gal ask for....... I certainly look forward to it. My balance has improved tremendously and although I still have numbness to my foot I am hoping to go skiing at least once this year even if it isn't until the end of the season.

Cheers Bonnie.................................

 

[Granbonny]

End of the Season

End of the Season

Was always the best skiing in Northern North Carolina. Owned a Condo right off the Bunny Slope. Loved to sit on deck and watch the little ones ski.. This was at Sugar Mountain. Had it for 10 years. then kids off to college, ect. Sold it..but will never forget my son backpacking my Kameron (Grandson) at age 6 months down the Mountain and going up the ski lift. Stopped..and guess what..dirty diaper. Smelly. But had to wait until we got back to Condo. no wonder this child of mine is wierd. Took him to skating rink today. he has the Tours roller blades..If we had ice..what a hockey player this kid could be. And I thank God everyday..they found my aneurysm..in time..that I get to hang ten with him Bonnie

 

[Granbonny]

Gemma

Gemma

So sorry. we seem to make a habit of getting off thread..but see, there is life after Valve Replacement...and MUCH better. Bonnie

 

[Gemma]

Re: Hi, Gemma!

Re: Hi, Gemma!

other things that you can get without stepping on his mother's toes.

Georgia, it's interesting you should say that - I've been trying very hard not to get involved in any disputes over who's in charge of looking out for Jim but find myself wishing he'd stand up for himself a bit more! Mind you, it was his easy-going nature that attracted me in the first place so I shouldn't complain!
I think for the time being it's going to be up to me to get as much info as I can, but Jim knows you're all here when he's ready to start asking questions or whatever himself.
His operation date has moved by the way - it's now scheduled for Thursday 27th November. I just hope it doesn't get moved again.
Got plenty of reading to keep me going til then though with all Nancy's links - thanks Nancy!
Gemma.

 

[Bunny_Rabbit]

Hi Gemma

Hi Gemma

I had to search forever to find this particular post. I thought it was a very honest explaination of what was going to happen after surgery (even though I haven't had surgery yet).

Thanks to Kevin M for the post.

http://www.valvereplacement.com/forums/showthread.php?s=&postid=49793#post49793

Take care.

 

[Gemma]

OK, I have finally got round to reading all the links posted by Nancy and Bunny!
Two questions/observations spring to mind - firstly, I read Steve Goldberger's journal including pictures of him unconscious in ICU! Funnily enough, Jim mentioned the other day that he really wanted someone to take a picture of him with all the tubes sticking out of him. Maybe it's a guy thing but I don't see the attraction personally. Anyway, it was interesting to know he's not the only one!
Secondly, a few people have suggested massage can help with muscle aches following surgery. Just wondering what kind of massage exactly? I passed a diploma in Indian Head massage (which includes back, arms and shoulders in spite of its name) a couple of years ago and some of the contra-indications include high/low blood pressure, circulation problems and having had major surgery in the last 6-12 months. Obviously a full-scale all-singing all-dancing massage is out but what can I do to help if Jim gets a bit achy?
Looking forward to your answers,
Gemma.

 

[Georgia]

He'll tell you where it hurts

He'll tell you where it hurts

Believe me.

When they open your chest they pin your arms together behind you - therefore all those muscles in your upper back and shoulders object MOST strenuously for a couple of weeks. And need massage. Funny - don't remember them hurting in the hospital - probably because I was on heavy-duty painkillers. But when you get home you start using those muscles and they really don't like it. Three upper back, neck and shoulder rubs a day will help him immensely.