Valve replacement Op in next few weeks, getting nervous, Help!

[MattBYB]

Hey,
I'm Matt, I'm 19 and I'm due to have a heart valve replacement in the next few weeks.
I don't have a definite date yet, however I've been told I will find out this week and it will be in the next few weeks.
I've been told I'm having a half mechanical half animal valve.

A bit about me, as a baby I had a leaky valve and had the balloon thing done that opens it up. My parents were told I would definitely need OHS to replace the valve by 6....but until last year I was still going strong!
I've noticed shortness of breath alot recently, even when lying in bed doing nothing, I sometimes struggle to breathe.

I work at a theme park and have been going on rides all my life, so always considered my heart to be working pretty well, I've never had any problems until now.

I'm so scared!! I can't sleep or eat properly! Reading this forum has helped me feel better but I have a few questions:

The idea of the breathing tube when you wake up is freaking me out! please someone explain that to me and what I need to do.
Does the operation make you sick? (I have a fear of vomiting...bit weird I know!)
Has anyone here had OHS then once recovered gone on rollercoasters or any rides? It's part of my job so really hoping I can.
Taking the tubes out of you at day 3 is it? Will they drug you for that or do you just have to get through it?

I'm sure I have lots more to ask I just can't think of them right now,
Thank you for reading and for your time,
Matt

 

[Lynlw]

Hi Matt, my son Justin also had a surgery at 19. Which valve are you having replaced? FWIW I have never heard of 1/2 mechanical/half animal valve? Do you think maybe you you are getting a tiisue (animal) leafelts sewn on a metal base? if so that is considerred tissue.
As for what you can do after surgery , like roller coasters, (well wether it is reccomended or not)Everyone is different alot depends on what is going on with your heart, your rythym, meds you are on, but FWIW Justin has has 6 OHS is on no meds and has permission to ride anything except rides with really hig Gforces. he rides roller coasters and pretty much everything at Disney if that helps.

Also when they take tubes or anything else out post op can be different for each preson, or even each surgery, it pretty much is when you are ready. Justin believes the more better you are about doing your breathing exercises and walking as often as possible helps you get home ASAP. Some people didnt have any pain when the tubes were removed others did, so you certainly can ask for drugs, when they are going to pull them. Also different people have different numbers of drain tubes, so if you have more than one often they are remved at different times, or different days, it pretty much depends when they stop draining. but 2-3 days is pretty common.

Some people get nauseus from the different drugs used during surgery and pain meds, speak up if you are nauseaus or have pain or anything, They should make it as easy as possible on you. Good luck

 

[yotphix]

Hey Matt,

I can't say how exactly things will go for you, but I can tell you how they went for me. What's more, I can tell you that my surgeon told me before the surgery that young guys (I was 39 and he considered ME young, so that goes double for you) have the best chance for a smooth ride.

When I came out of anaesthetic, I knew exactly where I was, and what the tube was. I found that it was easy to follow the advice I got here and elsewhere, to just trust the ventilator, and let it do the work. My breath naturally got into sync with it. For me, the breathing tube was out within a couple of hours, and the drain tubes were out the following morning.

In all honesty, the surgery was a big deal, and slowed me down for a while, but there wasn't anything about it that I could call 'hard', except the anticipation! Just try to stay focused now on the things you need to do before hand. Spend time with people you care about, and even more importantly, who care about you! Read everything here about what to expect, and what to bring (or have brought) to the hospital. These next few weeks will be a distant memory soon, and you'll be on the other side, breathing better, and taking roller coaster rides, before you know it. (I think it will be a couple months or more before you're riding serious roller coasters again, but I don't know of any reason you won't be back on them.)

Hang in there Matt,

The toughest part (the waiting) is almost over.

Paul

 

[Bill B]

The idea of the breathing tube when you wake up is freaking me out! please someone explain that to me and what I need to do.
-- First off, you will have a pre-op session, commonly the day before surgery, where staff will go over things to prepare you for surgery. That is a perfect time to ask about all these kinds of things.
-- There is a fair chance the tube will be pulled before you are fully awake. I woke up after my AVR with no tube and no residual problems from it. If per chance the tube is still present, you should try to just let things flow as the machine breathes for you and try to drift off again. That's what I was told, but perhaps someone who has had that experience will chime in.

Does the operation make you sick? (I have a fear of vomiting...bit weird I know!)
-- Well, I didn't have any vomiting. For a while post-op they will not give you anything to drink, just moist swabs as they want to avoid nausea and the possibility of vomiting as much as you do. I cajoled the nurse into giving me a fair amount of ice chips as I was extremely dry and I did feel a twinge of nausea, but it went away. By the next morning things settle down and you should be at least up in a chair and drinking fluids.

Has anyone here had OHS then once recovered gone on rollercoasters or any rides? It's part of my job so really hoping I can.
-- Generally there are restrictions on strenuous activities for up to 6 months, but if you are healthy besides your AVR, you could easily end up with no restrictions at all after that time. Many, many people do. It all depends on what else might be wrong. The valve repair/replacement itself does not hamper activity after the recovery period. I returned to racing cars at speeds of up to 200 MPH less than a year after my surgery.

Taking the tubes out of you at day 3 is it? Will they drug you for that or do you just have to get through it?
-- Some people experience discomfort with removal of the chest drain tube, temporary pacing wires and the bladder catheter. I don't know what magic my doctors and nurses performed, but those things just came out with no drama. The pacing wire tugged a bit and felt "odd" coming out, but did not hurt. I never noticed the bladder catheter at all. It's darn convenient not even having to think about peeing. Now, just to show I wasn't in some perfect fantasy, I did have phlebitis from an IV which is a somewhat painful inflammation of a vein. That resolved with warm compresses over a couple of days. Also, I blew up like a balloon post-op, retaining 10 lbs of fluid that took a week to resolve. If you are anxious about any of this and have any issues with them pulling these wires or tubes, let them know in advance. The staff is there to make you as comfortable as possible. Being relaxed and free of pain is essential to a speedy recovery, so they focus on that and you should not feel you have to tough out anything. Even though I had no significant pain, the staff identified that I was overly anxious about my recovery and unable to relax and sleep and I saw they were right. A little anti-anxiety medication and I was sleeping like a baby.

The thing that comforted me was understanding how overwhelmingly successful this surgery is. AVR has become rather routine. You generally get the best doctors and nurses looking after you. They are there for you. Let them know how you feel. Let your parents know as well, so they can help look out for your interests in the hospital.

 

[Zoeey2011]

Hi, I have had two valve replacements. My first valve replacement was in September 2005. They put in a tissue valve. My second surgery was Feb 8. 2011. I did not have any problems and pain with any of the tubes that were removed. The breathing tube on both occasions was taken out before I was fully awake. The other tubes were taken out a few days after the surgery and there was not problems at all. In fact I did not even feel it.

After both surgeries the recovery period for me went very well and I was back to work with 7 weeks.

Hope all goes well for you

 

[Boston Tiger]

Hi Matt,

You might get tired of hearing this, and also feel like it is a bunch of bunk, but the fear you are feeling right now is the worst part of the whole process. The operation and recovery is routine doctors and nurses in the cardiac care unit, and they will listen to any of your concerns if you let them know about them ahead of time. After all, it's a lot easier to work with a patient in recovery (knowing what their fears are) rather than fighting to calm them down. As Bill said, the staff will work with you, and they have some really nice medicines to take the edge off or keep nausea at bay.

Waking up to the breathing tube was one of my big fears heading into the operation, but I really wasn't that aware of them when I came to. I vaguely remember being told to breath so they can remove it, but don't recall much else. Later that night, I discovered that they actually had to shout instructions at the patients in order to get through their fog, since the patient in a room down the hall was putting up a bit of a fight.

Somewhere between six and eight weeks after surgery, I got to go for a ride in a car being driven by a race car driver who was teaching a crash prevention course that my son took. He took all the parents down the course to show them what the kids were being taught, which involved emergency braking and swerving techniques which were probably on par with a lot of amusement park rides. That wasn't particularly comfortable at the time, but I wouldn't give a second thought to going on any rides now that I'm more than a year post surgery.

You are going to do great, since as Paul said you are going to be really young in the cardiac unit (I was considered a youngster at 51, much to the shock of my kids).

Ken

 

[Superman]

Greetings MattBYB and welcome aboard!

I was a bit younger than you are when I had my first valve replacement. Just before my 18th birthday. I honestly don't remember much anxiety as like you, I grew up knowing it was coming and living with the threats of needing it by certain ages. When it finally came I guess I was pretty mentally prepared.

As far as rollercoasters, all the big rides have warnings - but it's akin to lighting striking in my opinion. As far as before vs. after - once you've recovered your heart should be in better shape than it is now. I wouldn't recommend riding big roller-coasters, but that's more because I'd feel awful if you did and something happened to you. As for me, I ride and have rode many of the biggest out there at the time. There are bigger ones today though.

If I compare the surgery I had at 17 - recovery was a piece of cake compared to the one I had at 36. Not only that, but I ran a 25k road race a few years later and completed several 5k's as well. Now I wouldn't say I was a good runner, since I had no foundation - but I did finish.

Good luck in your surgery. You'll do great! You'll remember some things as being unpleasant - but having watched my wife give birth five times - I count myself pretty lucky!

 

[Lynlw]

matt, I menat to mention, everyone is different but if it helps a little to read when Justin was able to do what, postop, I keept retty good updates going on his caringbridge page in my lik when he is having surgery or other interventions. So you dont have to read all of it (I started in about 9 years ago lol) if you go to the histtroy and scroll down to the beginning of May 05 you can read about the surgery when he was 17 and june 07 was his surgery at 19. When he was in the hospital I would do a couple updates some days, so for each "date' you might need to start at the bottom and read up.

 

[RealtorRick]

Matt:

I am not as young as you but consider myself young at 52. My surgery was 11 days ago and I went to Church today. I, like others, did not ever know I had a breathing tube, it was gone before I woke up. I approached the entire surgery and healing process with 100% confidence, lots of people praying for me and positive thoughts of a great outcome. I was able to do so by reading a lot the posts on this site and being educated. While AVR is a big deal, it is rather routine in the medical world. I had a choice of 3 different Hospitals near my home and I went with Geisinger Medical Center in Danville PA. I had a friend who had quadruple bypass by Dr. Russell Carter a year ago and he said the man was 100% straight up with patients yet he was a common guy. After the pre-surgery consultation I knew I would be fine.
Matt, take the time to educate yourself right here with what to expect. It is a neat process seeing the days after fall in line with what you learned.

 

[Mentu]

Hi, Matt, today we are all singing from the same hymnal. When you first wake, you have a lot of drugs in you. Even if you still have the breathing tube, it is not a big deal because you will not be alone. You will have a nurse beside you to coach you if the ventillator is still in place and as soon as you are breathing on your own, they will remove it and that only takes a second and doesn't hurt. Keep in mind that we all can imagine things being far worse than they are likely to be. At age 59, I had little difficulty with recovery and you are likely to have a much better time than me. You do have to pay attention to your body during recovery but by after three or four months you should feel better doing things than you have in a long time. When you have such questions, you should always discuss them with your surgeon, Matt, but I, myself, wouldn't think twice about going on amusement park rides. Unless you have other issues, you shouldn't worry about being a delicate flower after a few months of recovery. Your heart is going to be healthier than its been in a long time.

Larry

 

[MattBYB]

Hey everyone,
Firstly, Just wanted to say thank you so much to everyone for their kind words,advice and help.
I'm reading through now and I feel better already!
I am hoping my breathing tube is gone by the time I wake up, but I'm sure either way I'll just be glad to have made it through the operation.

It's my pulmonary valve I'm having replaced (I've just found out, wasn't sure which one it was before!)
Just waiting on a date now.
It's made me feel better finding out that this is the worst part, the waiting, I'm looking forward to waking up and knowing things can only get better
Thanks again everyone reading everyone's comments has made me feel a lot calmer about it all.

Matt

 

[jordan]

...I'm so scared!! I can't sleep or eat properly! Reading this forum has helped me feel better but I have a few questions:

The idea of the breathing tube when you wake up is freaking me out! please someone explain that to me and what I need to do.
Does the operation make you sick? (I have a fear of vomiting...bit weird I know!)...Taking the tubes out of you at day 3 is it? Will they drug you for that or do you just have to get through it?

Matt

It is totally natural to be scared about OHS. I tried really hard not to be scared about it, reminding myself that this is a common operation for my surgeon. However, I was still scared.

When I first woke up it was to the nurse yelling at me to breath. Then I realized that I still had the breathing tube in and I needed to breath between the respirator's breath. She yelled at me several times, because I kept holding my breath. They pulled the tube and it was uncomfortable, but it didn't hurt. Just remember to breath even if the breathing tube is still in.

I vomited once after surgery. I can't remember if it was the day or two after surgery, but I was sitting in the chair. Again, it was uncomfortable but not painful.

I was worried about them removing the pacing wire and drainage tubes. That was pretty weird feeling. I could feel the wires and tubes move through my abdomen as they were removed. Again very uncomfortable, but not painful.

OHS does put things on hold some. I've really had to come to grips with the fact that I cannot run or cycle right now. I will have to put my triathlon racing season on hold for most (if not all) of 2012. I was pretty well mentally prepared for surgery. However, I wasn't mentally prepared for recovery. I have started to get my head around the fact that I need to take it easy. Being on the younger end of the OHS spectrum (I'm 32), I think it might be one of the most difficult sides of recovery. You are going to have to prepare for that as well. You can't rush into riding roller coasters too quickly. You may need to push that back later into 2012 or even to next year. Let yourself recover. Do the defined exercises. Go to cardiac rehab if available. Do push yourself within the defined boundaries. Last Friday my cardiologist said it was safe for me to get my heart rate up to 70% of calculated max. I went to cardiac rehab later that afternoon and ran on the treadmill (4.5 weeks post-op). Don't push to far outside those boundaries. Roller coasters may fall on the outside for some time until you've progressed farther in recovery.

OHS is a traumatic event (emotionally and physically) and will change your life. In the short term, its an inconvenience with some discomfort and pain. In the long term, it may give you decades of roller coaster riding.

 

[Ovie]

Hey Matt,

I'm 25 and have my first OHS exactly one month from today, and am in the same boat as you are right now mentally. I've been told the waiting is the worst part, and I can believe that, I'm an emotional rollarcoaster, I have days where im a complete mess, and I have days where I don't even think about it.

Like you im worried on my restrictions post-surgery. I will never be able to play competitive hockey again which I've played all my life. That sucks, but it's a price I have to pay in order to even survive. I've personally been more depressed than ever than anxious about my AVR. Like everyone has mentioned, everybody heals differently, with their own bumps in the road.

All you can do is educate yourself about the situation, and ask any questions, even if you think they're dumb, do it. This site is incredible, and the amount of information and personal experiences I've read on here truly does calm the nerves with every bit of information you obtain from here. This is a great community and know what they're talking about.

I know it's soooo much easier said than done, but try and keep your head up and be greatful that you live in a time where a surgeon doing OHS is as routine as a Baker baking a cake. Good luck!

Also do you have a date set yet or met with a surgeon?

 

[Lynlw]

Hey everyone,
Firstly, Just wanted to say thank you so much to everyone for their kind words,advice and help.
I'm reading through now and I feel better already!
I am hoping my breathing tube is gone by the time I wake up, but I'm sure either way I'll just be glad to have made it through the operation.

It's my pulmonary valve I'm having replaced (I've just found out, wasn't sure which one it was before!)
Just waiting on a date now.
It's made me feel better finding out that this is the worst part, the waiting, I'm looking forward to waking up and knowing things can only get better
Thanks again everyone reading everyone's comments has made me feel a lot calmer about it all.

Matt

Hi Matt, Sorry I didnt see this earlier. Justin's valve replacement was also his pulmonary. There aren't many members here who had pulmonary valves replaced, since it is one of the ones that is more common in Congenital Heart Defects that usually need some intervention as a baby /younger child and compared to Aortic or even mitral valves needing replaced aren't that common. Also it makes sense that they reccomended tissue since its on the right side of the heart and most docotrs rec tissue there for a few reasons. The good thing is for people that already have replacement valves in the pulmonary position thats one of the valves they already are replacing by cath and for the most part tissue valves tend to last longer on the right side.

You might want to also try the forums at the adults with CHD site http://www.achaheart.org/ and since you're in the Uk there is a GUCH org that will probably have a few more people in your age group
Here's he link http://www.guch.org.uk/

 

[Bean Counter]

I was 38 when I had my surgery 1.5 years ago. As far as the breathing tube went, I did not think it was that big of a deal. I was kind of awake when I had it taken out and just remember them telling my to cough. I did the best I could but am pretty sure it was nothing close to a real cough. I have not been on any roller coasters, but have been sky diving several times and did not have any issues. My cardiologist was aware of this and did not seem too concerned.

For me, i think the worst part of the surgery was having my catheter removed. My wife is a RN at the hospital where I had my surgery performed and told me that best thing to do was to make a playlist of my favorite songs and to have that playing when I started coming out of it...that way I have some familiar sounds. Problem was, they forgot all about it when i came out of it....no big deal.

Since I have a tissue valve, I will end up doing this surgery again some day and I can say that the breathing tube will not be something that worries me. As others have said, the anticipation is the hardest part.

Good luck. I was in pretty good shape heading into my surgery and a lot of people indicated that helped with a smooth recovery.

 

[pnarciso]

I had my surgery (AVR) 8 months ago and it went very well. Recovery is not painless, but for me it was quite easy (just do not sneeze ). I was walking in the hospital hallways on day 5. I went to all rides in Orlando IoA 4 months after surgery (talk to your surgeon about that). Read up all info on pre-op and post-op here, and do all you can to be prepared. If you know what is coming to you, you should feel more comfortable, not startled by things like getting your fingertips pierced for glucose control and other things that are "normal" procedures but may scare us who do not live it every day.

Paulo

 

[MattBYB]

Hey everyone,
Thanks again for the replies and answers to my questions and advice and everything! Really does mean a lot to have people to talk to that know what I'm feeling.

I still don't have a date, I was meant to find out a few weeks ago but it seems to have been put back again. I'm getting worried though, because the longer it gets the more depressed about it all I'm getting. This is a really weird feeling for me as I am normally very cheerful and I tend to moan at others for being moody, Now I'm doing it!
As much as I don't want to go through all this I know until it's done I'm gunna feel this way all the time.

I've been told I can't work so I'm in the house all day every day, thinking about the operation!

I'm glad to hear more about the breathing tube not being as bad as I was making out in my head. Paulo that's made me feel alot better knowing you were okay to go on rides after only 4 months! I'm hoping to make a speedy recovery as there is some cool rides opening in the UK this year that I don't want to miss out on for long!

Thanks for the links to the websites Lyn I'll look now

Thanks again everyone, Matt x

 

[Sarah_Louise]

Hope you get a date soon Matt, thinking of you!
You no where i am if you need out!
Sarah xxxxxxxxxxx

 

[neil]

hi matt ,the waiting is the worst bit, you will be just fine, i will give you 2 days after the op and you will be chasing the nurses,

 

[Ovie]

I'm in the same spot, couldn't work so stuck in the house, been that way for about 3 months. It's not fun, and I too was never really one to get depressed. However I'm close coming and just want to get it over and meet my fate. Just try to keep busy, you'll find you have days where you don't even think about, and others where it can be full blown panic (for me at least) hope you get a date so you can get on with your life.