Thanks for your replies, but...

[Mike From Michigan]

I would like to thank everyone for their kind replies....

The funny thing is, now that I was given the news I have developed some of the classic symptoms in the past week - lightheadedness and some shortness of breath, even at rest. Undoubtedly this is a psychosomatic reaction due to the added stress of "the news" but I find it very ironic also.

I plan on talking with a surgeon soon to get his take on this. Like everyone else, I am just frightened at the prospect of the surgery and all the pain and risks involved. I'll keep reading the message boards to get a better sense of how bad (or not so bad) it really is - I just hope most people don't candy coat their stories. If it was a week or 2 of sheer agony I want to know. Some other questions at the top of my head:

What was the worst part (besides the waiting)?

What part was not as bad as you feared?

How long did it take after surgery for you to feel somewhat normal again (little or no pain).

Is the catherization test (don't know technical term) prior to surgery really painful?

If you had to do it over again you would do what differently?


Anyway, it's hard to concentrate on much else right now. Thanks again for your help...


Regards,

Mike

 

[JimL]

Hi Mike,

What was the worst part (besides the waiting)? From what I hear, the waiting is the worst. I didn't have much time for any of it to sink in ahead of time.

What part was not as bad as you feared? The whole pain thing was well managed. I had no pain at all, except for two times: (1) sitting up the evening after surgery, and (2) the removal of the catheter. If I had it to do over, I'd take a healthy dose of painkiller before those two things.

How long did it take after surgery for you to feel somewhat normal again (little or no pain). Recovery is gradual and it all depends on how you measure it. I shocked myself by running up stairs not quite a year after surgery. We had gone up to the AuSable, and there are steps down to the river, 200 steps?

Is the catherization test (don't know technical term) prior to surgery really painful? No.

If you had to do it over again you would ...... Never want to do it over again.

Hope this helps.

 

[Tom F.]

For me waiting was clearly the most difficult part. The cath was no big deal at all, and there was no pain. You do have to lie still for several hours after the test, so haveing to watch daytime TV was the worst part. I had no pain post op at all, ever. Of course, I took my meds faithfully. The entire process was a walk in the park compared to what I had expected. Recovery takes time. I returned to work 6 weeks post op, started back at the gym same time. I still felt draggy and tired from time to time 6-7 months post op, but I still functioned ok. I had an aortic valve repair done, and with that there is a risk that at some point it may need to be replaced. That idea does not scare or upset me one bit, so that should tell you my reaction to the surgery.

 

[elphie]

Hi Mike,
I can totally relate to your post. Before my surgery, I was also asymptomatic, but as soon as I got the news that my doctor wanted me to have the surgery in a few weeks, I started getting palpitations, chest pressure, and short of breath. I figured it was mostly due to stress and hyperawareness. I figure I had symptoms before, but I just kept ignoring them because I didn't want to face surgery.
Anyway, to answer your questions, the surgery is not the agony that you think it's going to be. As a person who used to faint when I got my blood drawn, I didn't know how I would get through it, but I did, and when the time comes to do it again (i got a tissue valve) I know that I can do it.
The worst part besides the waiting for me was the 24 hours in ICU immediately after surgery. All "sugarcoating" aside, I can tell you that it was very uncomfortable and scary, but I knew that once I got out of ICU, I would be ok. The drugs they give you take care of pain, and I really don't remember vividly how bad I felt, I just remember wanting to be out of there.
The thing that wasn't as bad as I thought was really the whole ordeal. A lot of people fear the breathing tube, it didn't bother me. Another thing I feared was the catherization. It was nothing at all. It seemed like it took only a few minutes, and I remember the doctor laughing and talking to me during the whole procedure. The worst part was just having to lie on your back for a long time afterward, but once they let me get up, I felt fine. NO pain at all.
As far as when you start to feel normal, you feel better everyday. I had my surgery on dec. 11, and I was able to enjoy Christmas. The mornings were the worst part for me, but nothing about the operation was miserable enough to where I fear having another one. When I was a teenager, I had my wisdom teeth pulled, and I remember feeling more miserable from that experience, then this heart operation.
You have the same fears that we all did, but trust us, you'll feel so much better once you get this behind you, and then you too will want to tell others that it's not so bad after all.
Good luck

 

[Karlynn]

Mike,
I'm thinking that the fact that you are hesitant about the surgery is a good sign that your body will do well in recovery. I wanted my surgery so badly, because I felt so horrible. At 32 years old, I just about had enough energy to get my children ready for school and then lay on the couch. It took me a long time to recover because I was so debilitated. It is a very good thing that you aren't at that point, or that you don't have time to think about it because it is an emergency situation.

We're not going to lie - recovery takes a while. But the better physical condition you are in prior to surgery, the quicker your recovery should be.

Would I do it again. YES! Do I want to have the need to do it again? NO! The surgery saved my life and it will yours, and it did for eveyone here. A valve proven to be bad and getting worse will eventually take your life. Maybe not today, or next year or in 5 or 10, but it will take your life.


Best Wishes.

 

[ShezaGirlie]

Rose colored glasses....

Rose colored glasses....

What was the worst part (besides the waiting)? I had no waiting and the worst part was the total weakness. I didn't even want to breathe it was so uncomfortable. The shoulder/neck pain was unexpected and dreadful.

What part was not as bad as you feared? I didn't have time to fear anything.

How long did it take after surgery for you to feel somewhat normal again (little or no pain). Probably about 2-3 months, but the weakness lingers.

Is the catherization test (don't know technical term) prior to surgery really painful? Not at all..it was a breeze..nothing to it.

If you had to do it over again you would ......NEVER!

 

[Ross]

Waiting was the worst hands down. You spend so much of your time worrying about the what if's that it drives you nuts. What you have to do is relinquish control of a situation in which you have no control. We as humans don't find that to be an easy thing to do.

So you don't want any sugar candy coating huh? Well I'll tell you, it goes like this, My hip replacement surgery was far more painful then the heart surgery. Really, heart surgery isn't all that bad and the pain is very well managed. Yes you'll be miserable for a few days afterwards, but most of the pain is from your sternum being sawed in half, not from the heart itself. You won't want any of your friends cracking jokes or making you laugh and you sure don't want to sneeze. A sneeze is the most horrible thing that can happen, but you'll survive those too. Sometimes you wonder how, but you do.

To feel normal again? That depends on your definition of normal. If you mean like you never had surgery, about a year. If your speaking of pretty well and functional, any where from 6 weeks to 6 months. You'll be surprised at how well you feel just 7 days after surgery. If you were into tricycle riding, you could join Madison. Take a look at her 6 days after surgery!
http://www.valvereplacement.com/forums/showthread.php?s=&threadid=6666

The Catheterization is nothing. The worst part there is getting the numbing medication and that's like a bee sting for some. I felt nothing and actually enjoyed it. That's weird for me because I'm the biggest chicken there is when it comes to hospital procedures. Depending on how they stop the bleeding, you'll either be required to lay still for 6 hours or they'll put a plug in and you'll be good to go in 3 or so.

This surgery is something you don't want to have to do to start with, but sometimes it cannot be avoided. I've had my turn at it twice. Would I do it again, NO. I didn't want to do it the second time, but if I hadn't, I wouldn't be here. That's a great motivator when you think about it.

Honestly, just read around through the forums and learn as much as you can. Your mind makes this out to be much worse then it really is. The more you read and know, the more relaxed you will become.

 

[Georgia]

The fact that you've developed symptoms doesn't mean that it's psychosomatic: considering your doc's opinion, you were overdue to develop symptoms. Sometimes timing is everything.

Catheterization: I was terrified and had tranquillizers the few days before: they put me completely out for it. That suited me. It was, therefore, a piece of cake. And although I'm not afraid of it the way I was before, it's still a high anxiety issue and I would insist on being put out again.

OHS: oddly enough, I didn't have any tranquillizers prior to this; it just didn't scare me the way the cath did.

I was off all painkillers within 2 weeks. But still grabbing my teddy bear for coughs and sneezes.

ICU - hated it for the noise and all the others wailing and carrying on. Was OK once I got CD player and could block it out.

Have to get to work - will continue later.

 

[Granbonny]

At age 61 ..I had a cath on thursday and surgery following Monday..Attended my grandson's ballgame on Sat..I do not remember anything from my good-feel shot pre-op until 2 days later in a private room. NO pain..Up and walking. Had a wonderful hubby (retired) who did everything..so I could relax..and started out with a few walks...Worse was going for a blood draw 2 days after I came home. Was weak..went in my bathrobe I was lucky and got a home-tester very shortly after surgery. No more blood draws. I have a mech. valve and would never want to have another surgery. Takes a year to feel normal again.. Bonnie

 

[ALCapshaw2]

Mike,

All of your questions have been addressed many times in the various FORUMS, particularly the Pre-Surgery and Post-Surgery Forums, which I encourage you to browse.

YES, Heart Surgery is MAJOR surgery, but NO, most people are reasonably comfortable afterwards, experiencing more 'discomfort' than PAIN. I have NO recollection of chest incision pain following either of my Heart Surgeries. Muscle Pain is sometimes more of a nuisance than the incision due to having had your chest, shoulder, and back muscles stretched WAY beyond their normal range of motion. MASSAGE and pain pills take care of that, with MASSAGE working faster and better than the pills.

I remember being scared out of my mind before my First (of MANY) heart catheterizations. PIECE OF CAKE and I actually enjoyed watching the catheter moving around on the monitor. The Doc can control your level of consciousness from totally alert to "I don't want to remember any of this". Personally, I like to see what's going on. It truly is NO BIG DEAL.

'AL'

 

[Birky]

surgery

surgery

I knew in December that I might need the surgery, but waited to after the holidays to have the catherization. Should have done it right away. Waiting was the worst. That was a piece of cake. Put a plug in and had to lay 3 hours. Had to wait 5 weeks before the surgery and that was the hardest. The surgery itself was not as bad as expected. Don't remember much about ICU and was out in about 18 hours. Pain wise, I had 2 knee surgeries that were more painful. I found that it was just uncomfortable since your sternum was split and the hardest thing for me was finding a comfortable way to sleep. Kept me very comfortable with pain meds as I needed them. I had a fluid problem after the surgery and once they gave me the lasix and laxative, I felt much better. The weakness is there and that was harder to deal with when you are used to doing everything. I was back to work part-time in 5 weeks and 8 weeks full time. I have to admit that I was pretty tired when I got home. Did Cardio Rehab which helped tremendously. I am a year post op and the energy level is great. Didn't have that prior to surgery. Still having some little problems with sternum and headaches but generallyI feel great. Would I do it again? If I had to--Thank God for modern medicine,

 

[catwoman]

Mike:

The heart cath was a piece of cake. I found it fascinating. There was very very little pain.
Like Karlynn, I was in bad shape pre-op -- cyanotic, SOB, very little energy. My husband feared I would not make it to surgery. As much as I feared the surgery, I knew I would not live much longer without it.
I was already feeling much better as soon as I got to a private room. My eyes were fully open, instead of half-asleep as pre-op, I was no longer ashen and my heart was not pounding away. Pain was worst the first 3 weeks. I had no complications -- a-fib, fluid buildup, etc. -- in the hospital and only 2 bouts of tachycardia in the first 3-4 weeks.
I flew to Tulsa OK about 6-7 weeks post-op, had luggage help at both ends of the trip.
I complained to friends, "When am I going to be normal again?" They laughed at the "normal."
There was a lot of improvement at first, because I had so far to come from, then progress continued at a slower rate.

I am almost 9MO post-op. We were at my sister's lake house last weekend and I ran up the hill from the boat dock. Last spring I had to stop every couple of feet.
I feel "normal" again -- finally. Other than occasional discomfort when I have a coughing attack.

Would I go through this again? (Duh, do I want to live?) Yes.

Valve surgery -- whether valvotomy, repair or replacement -- is truly a miracle. We are alive today because of it.

 

[SJJ]

Mike,
Other folks have done a great job in relating their experiences. I really don't have much of significance to add and since my AVR was just 3 weeks ago tomorrow, I don't have a long perspective yet as to recovery. I can tell you that I'm sleeping well, on my side, have no pain to speak of, can walk 4 miles a day at a good clip (2 miles twice daily), do a lot of light housekeeping chores and have pretty good energy level until evening when I sometimes "hit the wall.'' For me, this has been a very do-able thing. The worst part, probably owing to my personality, has been in any way to be in a patient role. I find it very difficult to conceive of myself as anything other than healthy, vigorous, energetic and "good to go." In that regard, OHS has been a very trying experience but is also offering me many lessons worth learning. If you can seize on this episode in your life as an opportunity to learn and grow from the challenges you'll face, I think it can be a really positive experience......but that's the therapist in me speaking. You'll need to find your own way of sorting through it. Oh, and NO!!!!!!!!!, I never want to do this surgery again!
Sue

 

[Nancy]

My husband has had 3 valve surgeries and 2 lung surgeries. He has told me that the 2 lung surgeries were much more painful, by far, than his heart surgeries.

He is not one to worry about anything, I do that for him. He just wanted to get in, get it taken care of, and get on with life.

He has had many other extremely serious medical probems that almost did him in. Compared to those, heart surgery was just a matter of recovery. The surgeon and anesthesiologist do all the work. The patient is either asleep or drugged up.

There is some pain, fatigue and weakness and it takes a while to have those feelings diminish. The pain can be controlled with medications and gentle massage. The fatigue and weakness just take time and patience.

I think you'll find that that we don't sugar coat too much.

 

[tommy]

Mike,

Great questions!

Worst part: That feeling of being incapacitated and wondering if everything will truly be okay. And getting in and out of bed - nobody suggested a recliner.

Part not as bad as feared: Pain. As long as I didn't move too fast or do something stupid, I was off the hard stuff in about 10 days.

Normal: I felt good after 4 weeks, even with 2 extra trips to ER. I felt real good at 8 weeks.

Heart cath: Pretty uncomfortable lying motionless for 3 hours. Not too much pain.

Differently: I would have taken better care not to overdose on coumadin 2 weeks post op. I would have stuck to exercise program after rehab. I waited 2.5 years to get smart. What frequent exercise has done for my psyche is unbelievable. Wish I had done that sooner.

 

[xtremlee]

Hi Mike
I cant comment on the surgery mine is April 1st.
The cath that I was scared of and cancelled my first one was really not bad except the laying still part and that was just boring.
I think the hardest part for me is the ego. I am 33 and Im supposed to be fit not a heart patient. What there is nothing wrong with me. Its kinda embarrasing to be asked are you going to have heart surgery? When I say yes people say Im sorry. I dont want any one to be sorry for me. I live in a small town population about 600 so I think all 600 know about my surgery.
I am still stuggling with my ego. But hey what can I do?

 

[Rain]

Fear/waiting

Fear/waiting

Hey Mike,

The worst part for me was FEAR of the unknown. Just like it is for you. And that is what was not as bad as I had feared. I?m not sure if I feel ?normal? to this day! lol Seriously... my chest still hurts if I tweak it just right. But I was driving 7 days post op and brushing my then six year old?s knee length hair. NO ONE should ever do either of those things!! Probably why my chest still hurts at times.

I thought the cath thing was very interesting. Isn?t that the angio-gram? Anyway... I thought it was way cool.. he had this really funky music playing... very relaxed atmosphere. And another young dr in the room. He explained the whole procedure to me and the other dr. I wouldn?t have wanted to sleep through it, or not remember it. I learned a lot. It was basically painless.

If I had it to do over again......... I would have the surgery at least two years earlier... before the heart had ?global? problems and became damaged beyond repair. My PCP was waiting until I couldn?t function properly. She figured as long as I had the tenacity to carry in my own groceries or water ski... I must not need surgery....... even tho the echos and chest x-rays said otherwise!!!
Get educated about your condition and make sure you have the surgery when you need it. And ... waiting REALLY is the hardest part.

OH....... would I have the surgery again? If I needed another surgery to keep myself alive... you better believe I?d have it! In a heart beat!! I haven?t spent nearly as much time with my children as I want to.

 

[dawnwit15]

The wait

The wait

No sugar coating here. I just had OHS on 1/14. The worst part is the anxiety that builds during the wait period to your surgery date. I swear that is the worst part, thinking of the surgery and the "what if's".
The surgery itself and recovery is not that bad, keep in mind, while your in the hospital they have you on alot of pain med's so everything is very tolerable. It's not fun but it's not horrible. It's over before you know it. I think another hard part is learning to depend on others while you are not able to do things for yourself (ie. sit up, lift things, shower). Be prepared to lose some dignity and just accept that this is a temporary situation that you will overcome. Remember this surgery will result in your physically feeling alot better. You'll only be out of the loop for about 6 weeks, then everything goes back to normal. Stay positive as your attitude has everything to do with how well you recover.
Keep us posted here and rely on this website for support. We've all been there so we'll be able to coach you through it.
Best wishes.
Dawnwit15

 

[Marge]

<< What was the worst part (besides the waiting)? >>
Just the whole idea that I was having to surrender control to forces beyond my ability to control them. I'm not comfortable in the "patient" role. You have to participate intelligently in your treatment, but at some point you have to surrender control and trust your surgeon and his staff and the hospital staff.
And then after your surgery you are also dependent on other people for a while. Not easy if you are a control freak. For example, I am getting very tired of not being able to drive & having to be dependent on others to get where I need/want to go. (Hopefully, that will be for only a week more or so.)

<< What part was not as bad as you feared? >>
What scared me the most prior to the surgery was the whole ICU thing. I had had major surgery some years ago (not heart surgery), spent some time in ICU and it was pretty horrid. This time around the ICU experience was very different. I won't say it was pleasant but there was never anything I couldn't deal with. The breathing tube, which I had particularly feared, was no big deal. The worst part of the immediate post-op period for me was that I had nausea for some time (while still on the ventilator) -- probably from the anesthesia, apparently it is not uncommon after surgery -- but the ICU staff worked so hard to get me through that -- I knew I'd be OK. I can't begin to describe how reassuring it was to have the kind of one-on-one care and constant monitoring that you get in ICU.

<< How long did it take after surgery for you to feel somewhat normal again (little or no pain). >>
Depends on what you consider "normal." I just had surgery just over four weeks ago & I don't know how long it will take for me not to be very aware that I have had open heart surgery. But at this stage I feel pretty darn good. And have had very little pain either at the hospital or at home. I say this although I am a major wimp when it comes to pain!
The hospital goal is to get you back as close to "normal" as soon as possible. The physical therapist visited me the afternoon of the day they took me from ICU to the step-down unit, showed me how to get out of bed and back in correctly so as not to put pressure on the healing sternum, and walked me around the ward. After that I was allowed pretty much to get out of bed and walk around on my own. Pain management in the hospital was very good -- I recall little or no pain while I was there.
On return from the hospital, I have had some muscle pain (the sternum needs time to heal) but it has never been really bad. I've been able to sleep in bed (not in a recliner) since immediately after the surgery. After discharge from the hospital I took a pain-killer (darvocet) for about the first week before going to bed, to ease the muscle stress so I could find a comfortable position; since then, have only had to take tylenol (and that only occasionally).
Now, at just over four weeks from my surgery, I feel the occasional twinge in my chest but it's really just a twinge, not what I'd call "painful." It reminds me that I'm still in the healing process.
Remember, though, every case is different -- some people here will recall much worse experiences than I have had. But if you are reasonably fit prior to surgery, I think the healing process may well be not nearly as difficult as you fear.

<< Is the catherization test (don't know technical term) prior to surgery really painful? >>
For me it was not painful at all. The only "pain" I recall was when they gave me the novocain shot in the groin so they could insert the catheter. The only other sensation I remember is the warm rush when they inject the dye, which was not an unpleasant sensation at all. The worst part of the whole process is having to lie still on your back for several hours (six in my case) afterwards, and that is irritating, but not painful.

<<If you had to do it over again you would do what differently?>>
Well, hopefully this valve repair should last long enough I do not have to do it over again!
But if I could rewrite history, I wish the valve problem had been caught and identified earlier. (Part of the problem is that I was asymptomatic.) My problem now is that the regurgitation wasn't caught until there had been damage to the heart muscle (left ventricle), some of which will not be reversed even by the successful surgery. My advice: don't hang around waiting for the symptoms to get really bad; do the surgery before you get permanent damage.

 

[punkin32180]

Mike, The worst part overall for the surgery is probalby the waiting the week before and just being scared to death of going under the knife. I was scared and didnt want to face knowing I thought in my mind I was gonna die. The pain afterwards is not bad because if your hospital is anything like the one i went to then they will keep your morphined up the days after your surgery and you wont feel anything but tired. The only pain you will feel is when u go home and make sure you let your doctor know that you want pain meds for at home to keep you good so you wont feel anything. The worst part after going home is trying to sleep. I had a rough time trying to sleep and had to sleep in the recliner for a week and I am now back in my bed. I was out of the hospital in 4 days but I am young. I am 23 years old so i guess it matters how fast u heal. If I had to do it over again I would most definatly do it. I feel so much better today even after 2 weeks of surgery then I did before I went in. ITs amazing how you dont realize how good you can feel until you have it done. But its all up to you from here on out. I am 2 weeks out of surgery and the only pain I experience is the soreness in my sternum and thats manily after laying down and putting it in compromising positions. I would say it was probalby a week and half before I was able to feel like I was going somewhere with this all..> but like i said I would definatly do it over if i had to.

Jaque