Really Nervous

[NashvilleDave]

Hi everyone. This is my first posting to this forum. I must say that all of you are quite an inspiration! Here's my story, and then a couple of questions. First off, I am 32 years old living in Nashville, TN (no, I am not a native) and will be going in for aortic valve replacement surgery on the 21st. I was supposed to have it on 8/5, but, of course, I got sick the morning of the surgery (1st time in 6 years I have had a fever). Anyway, I will be having an artificial (St. Jude) valve put in. The reason I need the replacement is that I just found out 2 years ago that I was born with a bicuspid valve. Last year, it started to leak. I was also told that I wouldn't need surgery for at least 20 years. Whoops! Bad diagnosis I guess! I had my arteriogram last week. It did confirm my leak (crap!). What really upsets me is that I feel no pain, am in good shape, and have never had any health problems. Here are my questions:

1. I have heard from a few people that you can actually hear the valve "click" once it is inside of you? Is this true?

2. Are there certain foods that I should stay away from (besides salty foods of course) after the surgery?

3. What is a "realistic" recovery time. Can I be back at work in 4 weeks? Of course I won't push it. I am a business analyst.

Regarding the surgery:

1. How much pain will I really be in? Obviously, each person is different, but can I get an idea?

2. Did anyone ever have a problem waking up with the breathing tube down your throat? I am afraid that I am going to gag on it!

Any tips, or insights are REALLY appreciated! I am glad to see that I am not alone in this "blessing". Thanks again!

Dave

 

[Kevin M]

I'll take a stab at some of your questions, Dave:

1) I don't know much about the clicking, but I'm sure many of the mechanical valve people will be able to give you some idea.

2) You will have to manage your diet carefully, since you will be on a drug called Coumadin. It is a blood thinner and there are many foods that affect your blood's ability to clot. Too thin and you could have spontaneous bleeding or hemmorage. Too thick and you could throw a clot and have a stroke. Don't be frighted, there are many, many people on this forum who live very healthy lives with little worry about these things occuring. These things are rare if you take care of yourself. Others who are on coumadin will likely elaborate for you.

3) Personally, I would not recommend going back in four weeks. You might be able to manage it after 6. 8-12 is better, but I know many go back in 6-8. Four would be tough. You will tire easily and a full day will be difficult to manage. Your mind will feel sluggish due to the trauma your body has incurred and the effects of the heart-lung machine. We refer to this as "pump-headedness" around here. We all have it. You should not expect too much of yourself because you will get frustrated and you could easily slow your recovery through over-tiring yourself.

_________

1) Pain: Well, that's a tough one. Everyone is so different. I offer you only my experience with two surgeries. Yeah, it hurts. But I found it more uncomfortable than painful. Painkillers like Percoset are often used extensively for the first couple of days. Sometimes Morphine (which I don't like personally because it gives me a thumper of a headache). After that, they move you to Tylenol 3 or similar painrelief.

The pain and discomfort decreases incrementally over time. The first 24 hours suck, but you're usually pretty out of it. The next couple of days aren't as bad, but are still uncomfortable. After that the next week or so sees a more steady but manageable level of pain. After week one, you'll notice a significant difference in your ability to get around, think clearly and deal with the pain. I found by this time, the pain wasn't all that bad in comparison to the first few days.

You will have trouble sleeping for the first week to 10 days. You will have trouble getting comfortable, but there are a lot of pillow things you can do to help you with this.

It's best to have someone stay with you for at least a couple of weeks once you are moved to home, preferably more if possible.

2) The breathing tube: This is uncomfortable, but you will not likely gag. Many people end up with the tube pulled prior to waking up, so they don't even know it was there, except for the telltale scratchy throat. I woke up both times with the tube still in. After my first surgery, I felt a little panicked because it was breathing for me and your natural reaction is to fight the breathing machine. I fought it, despite the nurses pleas. I was rewarded with a belly full of air and after the tube was pulled, they had to stick another tube down to my stomach to let the air out. I threw up all over some poor nurse.

Don't fight the tube! After my second operation, I was aware of this and it was far easier.

I don't think you gag because it is right down your throat and the gag reflex is sort of bypassed somehow. I found the TEE test far more uncomfortable. You may or may not have had this test, but if you have and you had no gaggy problems, you'll be fine with the tube.

It's not comfortable, but I never found myself fighting for air or feeling like I was choking or anything.

If you have any other specific questions, please feel free to email me.

Your life is going to change, but most of this is attitude. Fear is almost always triggered by unknowns. Some of us feel better by knowing what to expect. Some of us are too frightened to hear these details. Personally, I felt that the more I knew, the easier the process became. It's not easy to hear some of these things, but you absorb the information, deal with it and then you can deal with it in part before your operation. That helps to relieve some of the stress. Find some sort of relaxation techniques that work for you. Many of us used relaxation techniques, prayer, meditation or other methods to try to keep ourselves relaxed. This is no easy task.

You aren't alone in this. There is almost always someone here who has gone through what you are going through and they all want to help, so don't feel weird about using this forum as a resource. These people care and that makes all the difference in providing you a support group to help you through this difficult time.

Kev

 

[Beverly]

pre-surgery- really nervous

pre-surgery- really nervous

Dear Dave,

In reading your post I was taken back to my pre-surgery days. I remember feeling pretty anxious at first and then as the time got closer a sort of resolve took over. The last memory that comes back to me strongly was lying on the table I was wheeled down on and being left waiting to be taken into the OR. Lying there alone a sudden fear came over me that this could be my last memory and I was alone. A tear came to my eye briefly and then just as suddenly in my head I was telling myself that God had taken care of me all of my life and that I could be sure he was going to do so now. Not being a consciously overly religious person I was somewhat surprized by this occurrance but after that thought I felt suddenly very relaxed and ready to have my surgery.

In July of 1990 I had my aortic valve replaced for the same reason as you. I also received a St. Judes aortic valve. Yes it is true that you can hear the valve click. This will be most noticable to you immediately after surgery. If you are married your wife may also be albe to hear it in really quite spaces but for some reason over time this passes. I have never stood in a room and had anyone ask what that clicking noise is so don't worry about it. With respect to food, they will give you instructions before you leave the hospital but I can tell you I have not eliminated anything from my diet. I agree that recovery time and pain are very individual things. I would not refer it it as pain either. I think discomfort really does say it better. You will be given medication that I guess is the reason that it stays at what I describe as discomfort so be sure that you get your medications on time so that you stay at the "discomfort level" immediately post-op. Your need for medication will diminish as healing progresses. The breathing tube.... I have a strong gag reflex and I realy didn't enjoy this phase since I did regain consciousness while it was still in place. The thing I would recommend is to try to distract yourself from it's presence and know that it will be removed soon!

I was in my 30's also when I had the surgery and I'm sure you will tolerate the procedure well and I look forward to following your progress!

 

[Don]

Pain & The Tube

Pain & The Tube

Dave,
I'll give your last two questions a try from my perspective, and for my situation:
#1. Pain Much less than I had anticipated. Not an issue. My biggest source of discomfort was being hooked up to all of those tubes and wires in the CICU. Perhaps I had good pain management cause I'm not very tough.
#2. Breathing Tube. I really worried about waking up with that breathing tube in me, gaging, and trying to fight it. But I was never aware of it; I assume I woke up afterward.
Since I received a tissue valve I don't have to worry about diet and other coumadin related issues. (But I do try for a low fat diet and try to remain at a reasonable weight.) On the other hand, I hope to live long enough to need a 2'nd surgery in eleven years or so, which is a downside to a tissue valve.
Overall its been almost 120 days since my AVR surgery and I'm doing pretty well. My biggest complaint today is that I still don't feel like a 25 year old. That I'm living in a 69 year old body is totally not relevant.
Nervous about the surgery? Scared? I don't want to brag but I don't think anyone can beat me on that score.
Best wishes with your surgery. You'll do fine.
Don
AVR; 4/02; CCF; Cosgrove; Bovine Tissue Valve

 

[ALCapshaw]

Hi Dave,

I received a St. Jude mechanical valve in May this year. Only rarely do I think I can hear it and that is if my heart is pounding (after exertinon) in a VERY quiet room. I think some of the older mechanical valves, or perhaps mechanical valves from other manufacturers, are louder.

Recovery is very much an individual experience. Generally, the younger you are, the faster you recover. Similarly, the better your overall health, the faster you recover. A FEW people return to work in 4 weeks, but that has to be the beginning of the curve. Most good recoveries take about 6 to 8 weeks. You will continue to improve for at least 6 months, maybe longer (especially those of us who are older or have had more than one heart surgery).

As everyone has indicated, the typical post surgery experience is varied levels of discomfort. IF you feel PAIN, push the Nurse Call Button and they will fix you up in no time. Be sure to take your pain medications ON TIME. Don't try to tough it out since once your pain medication wears off, it takes a while (30 to 60 minutes) for the next dose to kick in. NOT a fun time. After my first surgery, I felt 'some' discomfort in my chest in some positions or movements but was able to find comfortable positions to rest most of the time. After my second surgery I had ZERO chest discomfort but a LOT of muscle pain (mostly around my shoulder blades) if I went too long before taking my pain meds. Massage really helps if you can arrange for someone to provide this service.

Having never smoked, my lungs were in pretty good condition before surgery even at my age (58). I was fortunate to have the breathing tube pulled before I can to for both surgeries.

Did you cardiologist give you an indication of how severe your valve condition is? After I was first advised to have surgery, a friend urged me to get a second opinion and another cardiologist agreed to perform a TEE provided a more accurage picture of my condition and I was able to go another year before needing surgery, following an adjustment to my medications. My situation involved Aortic Stenosis which is different from your situation of course.

Just remember, there are THOUSANDS of survivors still walking around and complications are quite rare, especially for someone as young as yourself and presumably without other complications.

Hopefully RobThatsMe from Nashville also will check in with some information about the facilities there.

Best wishes, 'AL'

 

[hensylee]

Hey Dave - welcome to our house. By the time you are ready for surgery, many of your fears will be eased quite a lot because there is just a wealth of information here in VR and besides that, the support is better than you can get anywhere else because most members have been there/ done that and can relate to what you are and will be going through. You are setting out on the path to the mountain, as we call it, then up and over the top to the good side where better health is. And while you travel the path VR members will go with you - all the way. God bless

 

[JenniferO]

Dave:

I second the advice about second (and third) opinions as to the timing of the surgery. At the same time, remember that you don't want to wait until you are really feeling severe symptoms because by then, your heart may be enlarged to the point that the valve surgery will do you no good and the damage is permanent. There are objective criteria regarding EF fraction and enlargement of the chambers of your heart that tell the surgeon when it is time!

I am a total wimp when it comes to pain. The only real "pain" I remember was one time in the ICU when my nurse was a little busy with the person in the second bed and I had to tell her that I really needed that pain medication because I didn't think I could stand it much longer. She injected the medication in the IV and it took effect within five minutes. The breathing tube was out by the time I was conscious enough to know anything in the ICU.

Nausea was my problem, and was caused by the narcotic pain medications. I suffered with the horrible nausea for about three days after surgery. The fear of pain tends to make us think we need the heavy duty painkillers longer than we do. I would have been much better off to haVe switched to just good old Tylenol when I got out of the ICU. It really is enough. Once I did switch to Tylenol, I felt much better. It's not really pain you feel, but skeletal discomfort and the weight of the drainage tubes that they have attached to you for the first few days. Once they pull the drainage tubes (sometimes some momentary discomfort there), you feel a lot better.

I work as a paralegal, so my job is not physically challenging. Still, I think four weeks is a little soon to return to work. I would have preferred to take 8 weeks off, but because I work for a small law firm without a formal medical leave benefit, I felt somewhat pressured to go back at 6 weeks. I worked part-time for the first two weeks back.

People who have not had open-heart surgery do not understand the assault on the body that it is and the time it takes to "come back."

I had minimally invasive heart surgery at Cleveland Clinic but at 6 months post-op still move slowly and feel like I am still in recovery. I am 50 years old and had no other health problems.
Recovery is a very individual thing.