How do you get ready?

[big_L]

It's been a rough 4-5 weeks since valve replacement was first mentioned to me. This was a result of a significantly worse echo, that moved me from moderate to severe. I just got the echo that was repeated in Kansas City last week and the numbers are even worse. So, I see no exit on this freeway except for surgery.

We've almost decided to just go ahead and have it done this summer. I am asymptomatic, and my local cardiologist told me a month ago to wait until I'm symptomatic. The KC cardiologist wants it done this year.

We live in the upper Mid west and we just don't want to make a decision to wait and then get "stuck" having to travel for surgery in the snow/ice season here.

Anyway, my spouse is a former Med Tech and she's seen first-hand all the bad things that can happen in a hospital. She is still recovering from breast cancer treatment that was not handled well. She is extremely gun-shy and scared that she just can't handle this emotionally. It's probably tougher on her. You know, I get wheeled off to OR and she gets to sit and wait. Then she's the nurse-overseer, medication monitor, coach, cheerleader all rolled into one for 4-7 days (hopefully not longer).

We're just struggling with how we get ourselves to the point that we can accept it and get ourselves strong enough to go through what will be the toughest ordeal of our marriage.

 

[ski girl]

I think it's got to be tougher for the partner than the patient too! But she's not the nurse overseer or medication monitor, her job is to hold your hand and keep you smiling. There is a section on this site for family members, get her on to that and she'll get heaps of support.

As you said, the worst bit is the first couple days when us patients really don't look our prettiest. But we aren't very aware of what's going on so hopefully she can take some comfort in the fact that you're out of it and not suffering! And finally, there is no option, this surgery will literally save your life and in six months time you can both look back on the experience and think 'thank goodness I have this awesome new valve'!

 

[ski girl]

And can I add - it's not an ordeal, it's a very simple operation (for the surgeon). Dealing with breast cancer would have been much tougher.

 

[Jkm7]

We are all stronger than we think.
We simply do what we have to do. You put one foot in front of the other and you walk yourself into the TEE test or the cath or whatever tests your surgeon or cardio orders. You get the results, you meet with your surgeon, you set a date and you present yourself on the appointed day. Don't overthink it. Certainly it is a major event in our lives but the only bad decision you can make when faced with needing valve replacement is to not do it.

You do whatever you personally need to do to make yourself go forward.
If you think the anxiety is just too much for you, speak with your doctor. Many will prescribe anti-anxiety meds to help get through it. These are the situations for which those medications were created.

If your spouse needs help, she, too, should speak with her doctors. After all she has been through, if she needs some medication to get through this with you then that is what she should do IMO

Just do whatever it takes and 'get it done'. In addition to worrying about traveling in snow and ice if you wait for winter, think of your recovery. Walking is about the best thing you can do post op to aid in healing and regaining your strength. If you wait until winter, the weather could be unsuitable for you to walk outside.

Let us know how you are doing and if there is any way we can help you along the way.

 

[AZ Don]

All we can do is play the hand each of us is dealt. In my case waiting is higher risk than the surgery and with a worse prognosis. Perhaps it is fortunate for you to have the time to prepare and plan, but the downside is the waiting. My wife has experienced first hand some of the mistakes that can happen in a hospital and now can't stand to even go in a hospital. Early this year I had an outpatient procedure and she waited outside until I was in recovery. This may well be harder on her than it is on me, but we are both doing what we have to do. I may not ever be ready, but ready or not I'll be going into the hospital on Wednesday for my surgery and I know my wife will be there when I wake up.

 

[haggis basher]

Hi AZ Don
Thought that I would wish you all the best for your operation on Wednesday.

Hi big_L
Sorry to hear about your predicament with your operation. All I can say is "Take it a day at a time". Sit down and write
the situation out on paper, and work out the best solution whilst not acting on emotion!
Good luck, and keep us informed.
Brian

 

[pellicle]

How to get ready?

Don't blow it up bigger than it is in your mind. Just tick the box and move forward. Its something that has to happen, it will make things better.

 

[sood]

The decision to go for it is the hardest decision. I had to say go, my doctors were not pushing me to. I tried to listen to my body. I am glad I made the decision I did. Things were worse off then tests revealed. It took me a few months to make my decision. I spoke to surgeons, gathered data and most of all thought about how my body felt. Now I am 16 days post op and feeling pretty good. Take your time and make the best decision for you and your family.

 

[missaviator]

My advice is DO IT. Waiting can be horrible for you mind set and could worsen your condition....from my experience waiting is not the best option.

The sooner you get the surgery, the sooner you will be given a clean bill of health! You and your wife can seize everyday of your life and feel so blessed to have both overcome such difficulties.

Be positive! You can do it!

 

[kimcdougc]

All we can do is play the hand each of us is dealt. In my case waiting is higher risk than the surgery and with a worse prognosis. Perhaps it is fortunate for you to have the time to prepare and plan, but the downside is the waiting. My wife has experienced first hand some of the mistakes that can happen in a hospital and now can't stand to even go in a hospital. Early this year I had an outpatient procedure and she waited outside until I was in recovery. This may well be harder on her than it is on me, but we are both doing what we have to do. I may not ever be ready, but ready or not I'll be going into the hospital on Wednesday for my surgery and I know my wife will be there when I wake up.

AS Don, I have my AVR surgery Thursday. These last days are really hard...the anxiety and all. Funny, the surgery is our choice. I find myself thinking, I don't have to, but I will show up nerves and all. I will be thinking of you Wednesday. Prayers are headed your way. See you on the other side of the mountain. Kim

 

[Lex Luther]

All we can do is play the hand each of us is dealt. In my case waiting is higher risk than the surgery and with a worse prognosis. Perhaps it is fortunate for you to have the time to prepare and plan, but the downside is the waiting. My wife has experienced first hand some of the mistakes that can happen in a hospital and now can't stand to even go in a hospital. Early this year I had an outpatient procedure and she waited outside until I was in recovery. This may well be harder on her than it is on me, but we are both doing what we have to do. I may not ever be ready, but ready or not I'll be going into the hospital on Wednesday for my surgery and I know my wife will be there when I wake up.

Don:

Thanks for all the information you have provided. When my sister had this surgery almost exactly a year ago, I remember all of it. She does not. Visiting times were very short and ICU is an experience for family. Your wife hopefully will have family and friends to support her. This time next week you will be on the road to recovery. Let us know how you are doing - particularly helpful for those of us in the "waiting room".

 

[AZ Don]

Thanks for the good wishes, I'll post how I'm doing once I'm back home. My Mom and my wife's family will be around to help her out.

Kim, good luck with your surgery as well.

 

[Guyswell]

Big L.

Don't wait until you're symptomatic. If your stenosis is considered severe at this point, no good will come from waiting. Your heart is already under stress from having to work harder than normal to compensate for the restricted blood flow. At some point (nobody knows for sure when) permanent damage will be done to your heart muscle. At that point, the odds increase that you will need a pacemaker or will be left with permanently diminished pumping function.

Once you've convinced yourself that waiting too long is more of a risk than the surgery itself, you should proceed. The odds of a successful surgery are very high but start to go down if you allow yourself to become a sicker and weaker patient. Take the time to be a well-informed patient. Ask lots of questions and make sure you understand every procedure that is being done and every medicine you are prescribed. If you and your wife are well-informed, it's less likely that there will be any mistakes in your care after the surgery.

Finally, if you are a person of faith, you should pray for the confidence and the peace of mind to proceed with the knowledge that God is in charge. There's a reason you are being given the chance to have this problem fixed at this time. Trust God.

 

[Guyswell]

Big L.

One more thought...

After you get done with this surgery and your recovery, you'll probably look back and see your wife's breast cancer was the bigger ordeal.

 

[Heather Anne]

Hey Big L --

I am exactly in your situation, so for what it's worth, I'll tell you my thought processes. I'm 48 years old, and I've known I have a bicuspid aortic valve for practically my whole life. I've watched it go from mild to moderate to severe to, at most recent ECHO in April, critical. My cardiologist wanted me to have the surgery two weeks after the ECHO, but I, like you, am asymptomatic, and the surgeon told me I could wait until I actually had symptoms, which he thought might be as much as a year or two from now. I decided to go ahead and schedule it this summer, because (1) I'm going to have to have it anyway, and (2) the uncertainty that would hang over my life as I sat around waiting to feel "symptoms" would drive me absolutely batty. I'm very comfortable with my decision, and looking forward to having it over and done so I can get back to my life. I view it as something that, while unpleasant in the short term, will save my life.

These boards have been of great help to me, as I've read the stories of so many who've gone through it and come out the other side healthy and happy and living well. You will do that, too, I'm sure. It will, of course, be very hard on your wife -- and her being in the nursing profession won't make it easier. My sister is also a nurse, and she's already gone to the dark side when she thinks about my surgery. I tell her to remember that, as a nurse, she sees more of the "worst case scenario" outcomes from any medical treatment. Maybe if your wife can focus on being your advocate while you're in the ICU, she can find a positive way to be involved in your care that will keep her mind off of what could (but won't) happen.

 

[T in YVR]

Big L,
I'm in a similar boat to you and others like Heather Anne. I'm 47, 'functionally bicuspid' AV, severe regurg, moderately dilated left ventricle and asymptomatic. I found out 4 months ago and am over my shock/disbelief - now I just want to get it done so that I can get on with living. Other have stated it already, but I think the last thing you would want to do is wait until you are symptomatic. I am stunned at these cardiologists that tell people to hold off until they are symptomatic. Everything I have heard and read (incl. articles from Cleveland Clinic) talks about increased surgical risk and increased chance of longer term damage to the heart etc by waiting too long. I plan on going into my surgery strong and as ready as I can be - physically and mentally. No way do I want to be symptomatic if I can help it...

In addition to forums such as this and the other advice that people mentioned, there are some good books out there which help prepare you for the surgery (pre and post op) and help provide different perspectives on the whole thing.

Good luck with your decision,
Tony

 

[kimcdougc]

Well bigL,

My surgery is for Thursday May 23rd. I am very nervous but Lord willing will show up on Thursday to kick this monster in the rear! So, I will let you know how warranted our fears are and will have been. Take care and all the advice given here is by those who have been through it all before us and lived to tell about it. Take care, Kim

 

[Heart Of The Sunrise]

Here is what worked for me: A complete understanding of what my medical problem was. A complete researching of what my surgical options were. Picking the one that I felt was right for me. Joining the YMCA and walking 2 miles per day 6 to 7 days per week for the 2 months leading up to surgery. Losing 12 pounds pre-surgery. Being blessed by a great primary care doctor and gifted cardiologist. Having total trust in them and my world class surgeon! Today's first post-op echo was described by the technician as perfect!:thumbup: Our surgeries are a a big deal to we patients, but it is just a routine day at the office for the gifted medical staff that save our lives! 9 weeks post-op, back to work in two weeks! It was just under 6 months from diagnosis to surgery. I was completely asymptomatic. I was lucky I found out about it!

 

[pellicle]

“There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever”

 

[SCCWS]

And can I add - it's not an ordeal, it's a very simple operation (for the surgeon). Dealing with breast cancer would have been much tougher.

I agree. I found the operation ( AVR-9/5/12) to be much less involved than I thought. I had the procedure done in the afternoon. My wife was shocked how bad I looked with all the tubes in me that night. I was off all the tubes by early the next morning and was sitting up in a chair the day after, attached only to the IV machine. I was moved to the step-down unit the next day and started brief walks that day.
From a pain standpoint, I took one painkiller the first morning when I became alert in the hospital at the suggestion of the nurse. I had no pain but she felt it might still be the anesthesia working. I never took another one
Like many, recovery at home has good and bad days. I developed A-Fib about a month later which changed my medication and put me on warfarin but only for 6 weeks. I also developed a constant cough for the first week home but that cleared up. That was painful because of my chest.
I chose a tissue valve because my Doctor is already doing the new less obtrusive procedure for patients who cannot handle surgery. So my feeling was whenever the tissue valve gives out, the next surgery would be less involved. But after having the AVR surgery, if I had to go back( 64 yrs old now) it would not be a major concern.
As Ski Girl said, there are so many people with worse health problems than I had. Now I went into surgery in good health, speed walking right up to the weekend before. My Dr had told me at last echo ( 6/12) that I would need the surgery by May/June 2013 timeframe. I decided instead to have it done last fall before I was forced to have the surgery. .