Scared surgery Sept. 5th

[lilbit]

Hello~

My name is Christine (AKA lilbit) and this is my first post. I am having AVR on September 5th at UCLA by Dr. Laks. I have decided on getting the On-X valve with the limited meridian incision. I am down right scared not so much of the surgery but of the painful recovery and being on warfarin for possibly the rest of my life. Anyways I was born with Arotic Stenosis and everything has been fine with my annual EKG/Echo and 2 pregnancies up until this last June. i went to play softball I hit a single ok I made it to first base and was ok then came the homerun the next batter got and I had to run 3 bases and next thing I new I got dizzy and blacked out turning blue in the lips so when I came to I was in a ambulance. Well turned out my aortic valve was 5.4 cm. So then my cardiologist said it is the time and this was confirmed by a angio and 2 cardiologists. I never thought I would be 30 years having this surgery. But here I am. I just wanted to say Hi and give you some insight on me. I am sure I will have alot of questions in the future and I am so happy that this website is around. It has already helped me alot. So Thank you all for being here. Three questions does anyone know what the best medicine is for reducing the incision scar? And how much pain medication do they give you when you leave the hospital? Also I noticed when you are on Warfarin you can not take asprin or ibuprofin, what pain reliever can you take?

Thanks
Christine
AVR on Sept.5,2006
UCLA, Dr. Laks

 

[ALCapshaw2]

Welcome to our world 'Lilbit'

First, I hope you will take some comfort in the fact that Heart Surgery is a highly refined art with an extremely high success rate, especially for first time surgeries in patients under 60 years of age.

Dr. Laks has been mentioned by several on VR.com so I expect he is an experienced and skillful surgeon.

PAIN control in the hospital should be excellent. Most report only some 'discomfort' in their chest. Some of us have had some pretty INTENSE Muscle Pain in the back and/or shoulder muscles from being stretched during surgery. MASSAGE is the Answer to FAST and EFFECTIVE relief. You will most likely have a prescription for pain medication when you leave. MANY people report that they need nothing more than Tylenol by the time they are released to go home. Tylenol is THE preferred pain relief medication for aches and pains following OHS (i.e. after you have recovered and for the rest of your life).

Vitamin E (liquid of gel) is supposed to help reduce the scar. There are some other medications also but I've forgotten their name(s).

Remember that every member here is either an OHS SURVIVOR or a family member of a survivor. Most report that the wait before surgery was the WORST part and that the actual surgery was no where near at bad as they had imagined beforehand. Many even report reaching a sense of CALM or acceptance just before surgery.

Several posts have been written about what to take to the hospital and how to prepare beforehand. Ask the hospital if they provide "Guided Imagery Tapes" or do a SEARCH (top of the page) to see where they can be purchased.

Browse around in the Pre-Surgery and Post-Surgery Forums for more ideas on how people coped / prepared for their surgery and recovery. Many report using a RECLINER to sleep in for the first few weeks at home since laying flat in bed can be 'uncomfortable' until your sternum heals and becomes more stable.

Will you have someone to stay with you for at least the first week (preferably two) at home until you are able to take care of yourself?

'AL Capshaw'

 

[lilbit]

Thank You Al

I do have 3 different people taking turns watching over me. I am also renting a electric hospital bed for the first month. i figured I would be more comfortable on that. People keep telling me it is going to be ok and even though i feel the surgery will go well I turn to this forum because you have or know someone who has gone through this so you understand me where right now I feel people around me currently do not. Personally I think the hardest decision was which valve to choose. Whether I wanted to go with one that I would definetly need additional surgery or go with the other which should last but I have to take the warfarin. But here I am surgeryalve around the corner I am just really hoping I made the right choices when it comes to the valve and incision.

Christine

 

[aussigal]

Hi Christine...and welcome...

I am fairly sure you wont have many problems with warfarin and will soon be wondering why you were scared of it...once you get your dose right it isnt much of a worry at all and barely has any effect on your lifestyle. I am 4 1/2 months post-op and at 41 will be taking it for a very long time to come...it doesnt bother me or restrict me...
I know there are lots of Old-Wives-Tales out there surrounding warfarin which can play tricks on our minds when we are new to this all, but you will soon realise it really isnt that bad...there are some meds you cant take anymore but there are lots of alternatives Tylenol is one many use...

Now as for the hiring of a hospital-bed, I dont know if you will really need it...I couldnt wait to get home to my own bed and I did just fine in it...You will most likely not be an invalid when you get out of hospital, more likely a bit slow and find yourself tired easily. Your chest may ache a bit but it really isnt as bad as you think its going to be. The best thing is to keep-up the meds they send you home with for a while. All you need to do is walk , rest and breathe with your lung-exerciser toy.

Ask us lots of questions and you will soon be on the other side of the mountain wondering what all that worry was for ...

 

[OldManEmu]

Don't Panic

Don't Panic

Welcome aboard Christine. If I am not certain if you are referring to a 5.4cm aneurism or that you Left Vertical is 5.4cm either way you are ready for surgery. I found as Al has already said that I entered a state of calm a few days before surgery when I mentally handed over responsibility to the doctors. As for the electric bed you probably will not need, I was just glad to get home in my own bed and out of the back breaker hospital bed. I was only given pain medication on the first day when I woke from surgery after that I was offered nothing but paracetamol, it's not particularly painful when you?re in bed or sitting only when you cough and they like you to do a bit of that in the first few days after surgery to clear your lungs.

 

[Karlynn]

Welcome! You are going to do just fine. Yes, there will be pain, but since you may be expecting it to be horrible - it may turn out to be not as bad as you think. In my opinion abdominal surgery is more painful.

I agree about the hospital bed not being necessary. You may just want to use the money you would spend renting it and go buy a comfortable recliner. Many of us used those after surgery.

I've been on Coumadin for almost 15 years and I will tell you that it is not the big scary monster that some in the medical community make it out to be. (Go take a look at the "Kayaking" thread in Active Lifestyles and you'll see just how limiting it is! ) A few of us who are long-time Coumadin users put this thread together http://valvereplacement.com/forums/showthread.php?t=17116 as a brief overview of some of the basics.

If I were to have my St. Jude valve replaced today (and it's still working very well) I think I would choose the On-X too. It holds a lot of promise.

As we've said here many times, the only bad valve choice is not having any valve surgery. You are saving your life!

 

[Superbob]

Christine,

We were all scared -- even an old codger like me whose heart condition had been watched for 40 years before the OHS came! Primarily because of my age, I decided to go tissue valve but were I your age, I would have made a decision like yours.

Please be reassured; we have a whole large family here of survivors. Just take everything one step at a time and recovery should go well. A year and a half later, I am back to hiking, and am working toward opening a new business.

After your rehab, you will have a long and active life to look forward to. You can count on your vr.com family to be here to offer you their perspectives and encouragement every step of the way.

Cheers,

 

[Mary]

Christine,
I'm placing your surgery date on our VR calendar to remind everyone here that you'll be in surgery that day. You will have prayers and good karma surrounding you from your new VR family.

I've heard only good things about Dr. Laks, so relax and know you are soon to be in better shape than you were before.

Let us hear from you after surgery.
Mary

 

[BDMc]

Welcome

Welcome

Dear Christine, I'd worry if you had no fears! But as the others have said, I don't think it will be as bad as you imagine. From what I've read here, it sounds like your valve choice is a good one! Mike is our poster boy for active lifesyles on coumadin, so do check out his pics! As you can see from my avatar, I still get active too, so don't let that worry you. Take things step by step, and focus on the stage you are in, and soon you'll be back in the game! I'll be thinking of you, and sending calm strength your way. Looking forward to hearing how it goes, Brian

 

[debster913]

Hi, Christine--
I can't really help you out with the warfarin questions, but I saw that you mentioned that you are 30. I just had mitral valve repair at USC at age 30 myself (and much looking forward to my 31st in a few days!) Like you, I never imagined I'd need valve surgery this early on in my life, but there are plenty of members who've had surgery as children and young adults, and are all the much better for it. We are lucky that we live in a time that affords us this opportunity. I believe, if I'm not mistaken, that a great-great aunt of mine died of a heart ailment in her twenties (this was back in the 1920s, I think). Family members said she had a valve problem, and had she been born in modern times, she'd have been able to undergo surgery and live longer.

I hear Dr. Laks from UCLA is a really fantastic surgeon...several members here have been operated on by him, and were it not for my cardiologist's referral to my surgeon, I more than likely would have chosen Dr. Laks. That's not to say that I didn't like my surgeon; Dr. Starnes is also very top-notch and awesomely skilled at the type of surgery he performed on me. (Sorry, I'm rambling).

Anyway, just want you to know that despite whatever obstacles you may face post-surgery, I hope they are minor--and you will surely feel much better than you've ever felt in a long time. My surgery was almost three months ago, and I look and feel better than I probably have in five years! Just remind yourself that the next 30 years of your life will be better than the first 30. You have your health and your age on your side...should make for a breezy recovery!

Good luck to you, and many positive thoughts coming your way!

Debi (debster913)

 

[lilbit]

Thank you all for your kind words. I will keep you updated post surgery.

 

[Matt]

Hi Christine,
I am a few days behind you with surgery scheduled 9/11. Jeff in another presugery post is coming up this week as well with you. If it helps at all, I too, am starting to feel the anxiety ramp up to new levels as the date approaches. I am interested to hear what Dr Laks had to say the on-x. If
I go that way, he would be the guy I would choose to do it based on all the positive forum comments on this site. Good Luck & we will talk post-surgery and compare notes.

 

[JohnnyV_46]

You'll do great....Just a few things tho...Make sure you have an advocate with you 24 hours a day. Make sure that everyone and this is the important part!!! Make sure everyone who comes into your room, puts on Fresh Gloves.The nurses were best for doing this. The Doctors arrogantly did not. I know I may sound paranoid but hospitals are great places to catch infections. You will vastly limit your chances of contracting one if you make them follow that one simple rule. Make sure they give you plenty of Painkillers and don't hesitate to use them....You can wean yourself off of them easily enough.

JohnnyV

 

[RandyL]

You will do GREAT! I just know it. CYA on the otherside.

 

[lilbit]

Hi Christine,
I am a few days behind you with surgery scheduled 9/11. Jeff in another presugery post is coming up this week as well with you. If it helps at all, I too, am starting to feel the anxiety ramp up to new levels as the date approaches. I am interested to hear what Dr Laks had to say the on-x. If
I go that way, he would be the guy I would choose to do it based on all the positive forum comments on this site. Good Luck & we will talk post-surgery and compare notes.[/QUOTE

Dr. Laks was the first person to tell me about the On-X valve before getting my refferal to UCLA my valve choices at Los Robles Hospital were Porcine (Pig)Valve or St. Jude I was told by my cardiologist because of my age he recommended the pig valve because with either valve I would require 2 surgeries. i found this strange because I thought St.Jude's valve would last throughout my life. Anyways I met Dr. Laks and he gave my 2 choices Cow's tissue valve or the On-X. He told me the On-X valve has been used in Europe for about 10 years and in the USA for 3 years. He said this valve is showing great potential, which from reading up on it when it comes to mechanical valves this one rocks. It is show less destruction to platlets and studies are currently under way to see if people with the On-X valve will eventually only have to take a Asprin a day and little to none of coumandin. So far this study looks promising. But I am not basing my decision on that even though that would be wonderful. I just honestly do not want to go through another surgery even though I am going from a dirt bike to a quad after surgery. But we will see maybe someday I can dirtbike ride again because I really love dirtbikes. Sorry for rambling but if you are thinking of possibly going with a mechanical valve, I do recommend you look into this one. And it only requires 1 surgery.

Christine
AVR Sept.5,2006
UCLA, Dr. Laks

 

[Mary]

Hi Christine,
I am a few days behind you with surgery scheduled 9/11. Jeff in another presugery post is coming up this week as well with you. If it helps at all, I too, am starting to feel the anxiety ramp up to new levels as the date approaches. I am interested to hear what Dr Laks had to say the on-x. If
I go that way, he would be the guy I would choose to do it based on all the positive forum comments on this site. Good Luck & we will talk post-surgery and compare notes.

Matt,
I put you on the calendar for September 11. If that changes, let us know!

 

[Kate]

Hi Lilbit,
I had my aortic valve replaced last year at the age of 38 and know what you mean about feeling too young for all this. However, the good news is that young, active people tend to have an easier time with this surgery. I was already feeling like myself before they even transferred me out of ICU (with the help of pain killers, of course). I had no trouble walking the next day and was released four days after surgery. There is certainly some discomfort and the recovery takes longer than you might expect (I was back at work in six weeks but didn't truly feel fully myself for about 9 months.) Still,the pain was never that bad, I never took anything stronger than Darvocet, I slept in my own bed from the first night and had no trouble with my appetite. The worst part, I think, is the anxiety. It's just freakin' scary to have your chest opened up like that - both before hand and after - so anything you can do to calm yourself (bringing a walkman with music you like, doing deep breathing exercises, visualizing yourself on one of your favorite dirt bike runs - whatever works for you) will help. Best of luck and I'll be thinking of you on the 5th. Kate

 

[Jas0n]

sup Christine,

avr is not something any of us choose to go through. i dont think anyone in their right mind would want to go through the rigors of ohs voluntarilly (sp?). that said, you'll be fine.

i know it sucks getting avr at such a young age; im 22 and im only 4 weeks post op. and i feel fine. really, ever since week 2, i felt well enought to start driving and going out on my own. still, one has to be careful not to over due it those first few weeks. the worst part of the whole ordeal was the hospital stay. luckily, i only spent 3 days in the hospital (but that was more than enough for me!!).

some things i learned: (1) nurses will wake you up at all hours of the night, so dont expect to sleep; (2) perkicet (sp?) made me throw up; (3) the tubes DONT hurt when they come out; (4) the sooner you show the doctors you can walk on your own, the sooner they will let you out; (5) hospital food sucks (so my sis says), but i didnt eat at all those first few days so it didnt matter.

as for the recovery, it will go by very quickly. i didnt need much pain killers to be honest (only at night and only as a luxury). you will be sore throughout your upper body and your neck/shoulders/back will hurt alot more than you expect (for me, more than my incision/sternum) but not anymore than you can deal without pain meds; gentle massages do the trick. the incision scar is not bad at all; my scar is only 4 weeks old and you can barely see it (to be honest, i kinda wish it was longer - its only 7 inches or so - and more obvious, but i like scars). dont worry one bit. i was oddly calm walking into the or (yes, they now walk patients into operating rooms and dont wheel them). ohh, if you wake up with the int. tube still in your throat, relax. they will pull it out as soon as you establish your breathing, but if you get excited, it will only stay in longer (i decided to try and fight - as much as i had the ability to fight - the docs, so i distinctly remember a few hours with the tube).

we all made it through fine (and better because of avr) and so too will you. trust me, if this wuss can do it (proof: im a cyclist, so thats means im a guy who shaves his legs and owns more lycra than all the women on this forum combined), you will have no problem.

 

[greg]

Christine,
I wasn't much worried about the scar as long as the hair grew back... It did, so that is something for you to look forward to. lol..
I take ibuprofen when needed because it doesn't seem like tylonol does anything. However, I probably don't use that even once every 2 or 3 months.
I have a St Judes AV because that seemed like the best choice at the time. Coumadin is just taking one pill a day for the most part.
I see you ride dirt bikes. If it is MX type stuff there might be a problem.
I ride ATV's a lot, but they are utility type bikes. I've not had a problem, even with a few crashes thrown in. Just use good sense.
Recovery seems to be a bigger fear before hand than it really turns out to be.
You'll do great before and after.

 

[davidfortune]

On-X is a promising choice for mechanical valves. It was approved for use in the aortic position in the USA by the FDA & the Center for Devices and Radiological Health on May 30, 2001. It has been approved for use in the aortic position in Europe since 1996.

It holds the potential of better hemodynamic performance which hopefully leads to more LV remodelling, lower anti-coagulation requirements with the hope for anti-platlet medication (Plavix, Aspirin) only if the FDA trial prove out, and reduced pannus ingrowth which would reduce explantation percentages.

All these hopes will take time (years) to prove out, but the engineering seems strong as does the backround of MCRI (the company manufacturing On-X).

Time will tell.

Good luck Christine. We'll be praying for you. You'll do fine.

David