How Do You Manage It?

[epstns]

I'm newly diagnosed (aortic stenosis, moderate to severe) and also new here, but one thing strikes me clearly -- that many of the members here have been in my position already, and some still are.

Here's my question -- Once you are given the diagnosis of a condition that someday (but we don't know how to predict when) will require major surgery, how do you go back to living a life, just waiting for the situation to hit the "fix it now" point? Do you just live from exam to exam? If so, how do you keep your emotions under control and avoid having this thing take over your conscious life? I keep finding my thoughts drifting back to questions I cannot answer, and even wake up many mornings to find my mind already processing some hypothetical situation or question. I know I have many fears and concerns, but so must all of you have had. Any suggestions for maintaining some level of normalcy until all h*ll breaks loose?

 

[Nancy]

Here's how Joe and I survive. It works for us. First and foremost, you have to have doctors you have faith in. They have to be smart, conscientious and interested in your case. You will have to learn all you can about your condition, so that you can know what is expected and normal for the problems you have, and what is outside of the norm and needs immediate attention. That takes some time, but in my opinion, it's absolutely necessary for your own peace of mind. You must be unafraid to go and get help when you need it. You can't be shy about calling the doctor, or going to the ER, or even calling 911 if you have to. Too many things can happen if you wait too long. If you have a doctor who you think doesn't care or isn't up to the task, then you have to seek someone who is.

What I'm talking about here is an emergency plan for your life, a safety net, a safe and familiar way of living. If things start to deviate from that known path, it's time to take action. Sure it will be difficult to find out what can go wrong, but if you have a plan and you know what action to take at any given point, then you will be able to relax and enjoy things. You may never need all of the steps in the plan, but at least you will have them available in your mind. You must also enlist the help of your wife, husband a friend neighbor or significant other to be available for you in your time of need. Rehearse these steps over and over in your mind, "if this happens, then I will do this".

Get yourself a medical ID bracelet, necklace and wallet card listing all your known medical problems. Make an updated drug list and keep it in your wallet and make sure to update it when things change.

Once you have made this little safe nest for yourself, then don't worry about things until it's absolutely necessary. Dwelling on problems or "ain't it awful" is useless. It's detrimental to your health and serves no purpose. Remember you can't have two thoughts in your mind at the same time. So discipline your mind to shove unnecessary things away.

Not an easy task, but it really will help you. Best wishes.

 

[Jean]

SteveE, I agree with Nancy...find out all you can about your condition, the more you know, the better you can handle the situation and also keep track of what the doctors are doing...check out our archives of information. Realize that right now is the worst and scariest part. The knowledge will help. Find a doctor that you trust and respect and can talk with. Ask questions and understand what he/she is telling you. Many of us have lived many years before any surgery was necessary...I was diagnosed at 36 and didn't have surgery until I was 56...although things fell apart pretty fast when they started. Search for info about what type of valve would be best for you. Talk to your doctor and a surgeon. Remember that although this is earth shattering to you, these doctors do hundreds of similar surgeries a year...it is all routine to them. After surgery, the pain is quite manageable and recovery generally fairly speedy....3 to 4 months you will be pretty well on your way although you keep gaining ground for a year or so. I must warn you that I am a tough old broad and fairly optimistic and others may have another story to tell. I just am putting in my experiences. Good luck, live life to the fullest.

 

[Mb]

Hello....

This is actually an interesting post. Thank you for brining it up.

My husband has had two valves replaced, aortic and mitral. He is in CHF, has a-fib, and has a third severely leaking valve (tricuspid). All of the result of rheumatic fever at age 19.

Since we were married, we knew the day would come that he would have to have open heart surgery to correct, what we thought was one valve. Evidently, God had different plans.

We went through 34 years together,, raised a family, owned our own business, and in general were very blessed. He went to the cardio every year, had an echo done. We were NOT knowledgeable about his condition. His Dr. told him that he would "know" when it was time for the surgery. Well, he didn't, and neither did I. So, he ended up with a bad bout of congestive heartr failure, two leaking valves instead of one, and in chronic a-fib. Through this ordeal last year, I kept saying to myself that I should not be afraid, since he truly had the "best" doctors (we kept doing referrals till we got a surgeon in Boston), he was young, and we always knew this day would happen.

He is better now. He is not great. He takes all kinds of meds, his heart rate is not under control, he reatins fluid which we watch carefully, and I can tell you we know a whole heck of a lot than we did before. We have also visited the emergency room many times when something has happened that we become concerned about.

Nancy said a lot in her post. We have backup plans, and we KNOW what to do if something doesn't seem right. We know more about his conditions certainly than the average person.
We keep everything "in the day". We enjoy every day we have together, and we have a much greater appreciation for what God has blessed us with. We are grateful to Him for the skill and knowledge of the doctors who worked on my husband (by the way, he is 56 years old). Although he can no longer work, he plans each day to be productive as possible.

Truly, none of us knows what each day will bring us, but for the lucky ones who know they have a problem, they are forwarned. So, follow Nancy's advice....she is the guru in here. She has been there, done that.

You might find yourself going through a transformation....very different things become important. Your thinking and beliefs may change. Go with the flow.....it is a wonderful journey.

Marybeth

 

[RobThatsMe]

Hi Steve,

Nancy is right on with her advice to you. PErsonally I think her last paragraph is most important.

"Once you have made this little safe nest for yourself, then don't worry about things until it's absolutely necessary. Dwelling on problems or "ain't it awful" is useless. It's detrimental to your health and serves no purpose. Remember you can't have two thoughts in your mind at the same time. So discipline your mind to shove unnecessary things away."

1. Understand your condition. Read, Learn Make a plan and have confedence in your design.

2. Go on living and enjoying life.

3. As they say, "Don't sweat the small stuff" In other words, don't dwell on the thoughts of " what if's" that enter your mind.
Recognize the fact that you will get these thoughts, let them pass through your mind, and move on to other positive thoughtsof some good things going on in your life. You may also want to read a few books on meditation. I found that this helped me put my mind in a "good" place. I don't actively practise meditation, but I do know that some of the methods worked well for me.

By taking the good advice that everyone has provided, you will greatly improve your odds of surviving, having a successful surgery, and moving on with a productive life.

You can gain much knowledge from everyone on this site. Use the "Search" function to look up topics or concerns of interest. Read the profiles and stories of others on here. Look up info at other sites on your condition, and VENT when you feel down. Everyone here has been there, and will give you a boost when you need it most.

Wishing you good luck and health,
Rob

 

[starkone]

Dear Steve,

I am in the same boat as you! I was diagnosed last May and the thoughts literally took over my life. After initial diagnosis, I went for a second opinion to Brigham Womens in Boston. The results were virtually the same (moderate to severe AS). I finally ended up talking to a psychologist on the anxiety that was now in my life over this life changing diagnosis. I remember saying "how do you go on with a "normal life" after news like this!?" He said, many people live with difficulties in life and you need to learn techniques for dealing. ie. get a doctor you trust! (hard one for me), learn deep breathing for relaxation, and first and foremost, go on with your life!
After about 6 months had passed I find I am finally able to move on. I still check this site often but I don't dwell on it. I want to be informed but not scared. I deep breathe ALOT, and stay involved in life. I am unable to do some of the things I did before diagnosis (competive sports), but I enjoy what I can do, and look for new things all the time.
I am in the wait and see how it progresses stage also. I am on statins to hopefully lengthen the time before surgery (as per new study that shows less progression of AS on statins).
I know exactly how you feel. I was there, I am still there at times, but you will find that as you get farther away from the diagnosis it gets farther away from your thoughts.
Good luck to you!
Karen

 

[epstns]

This has sure gotten "deeper" than I expected, but that is so very comforting to someone so new to all this. I am not sliding down the hillside into depression, although I know that is not uncommon. I am, I believe, just trying to climb out of the simple "blues" that arise when we are confronted with a scary new obstacle. On a day-to-day basis, my feelings run more toward "there's nothing wrong until there's something wrong." In other words, I'm trying to get to that spot of not worrying until I have something concrete to consider. Just having a bit of a tough time figuring out how to get my subconscious mind to do what the conscious one wants it to do.

I keep reminding myself that I have a cardiologist who has earned my trust. He has not mentioned surgery yet, as we only have one echo as a measuring point. So, as they say, I'm in the pool but the water isn't too deep yet.

I do have strong faith in He Who Watches Us All, and see many reminders daily that I am in His care. Lack of faith will not be my problem. We (my wife and I) have been through a lot of difficult times, and we have always been taken care of -- which really affirms our faith.

I guess I can sum it up by saying that I am trying to learn how to live a reasonably normal life while "waiting for the other shoe to drop." In doing this, I'm trying not to become too paranoid about every little ache, pain or feeling -- but I am also watchful (probably overly so, right now) for trends, changes or symptoms of any significance.

Was it The Eagles who sang "Life as we know it ended today. . .?" Life goes on, but it sure is different.

 

[wlaldridge]

Steve,

You have done one of the most important things you can do. You found ValveReplacement.com and the weath of information, caring and sharing that is on this site. And, you are taking it seriously, while trying not to let it consume your life. You will get there with a lot of help from your friends.

Nancy, with all she is going through, again spreads her angel wings and brings forth the sage advice. Comforting and practical. Everyone here loves her and prays every day for Joe and his personal angel.

You must take seriously the diagnosis and the waiting is by far the toughest part. My best wishes to you.

Come in often and update, vent, inform, and pray with us.

Bill

 

[Perrster]

Nancy's comments have got to be the best I've seen yet on this site. If there were awards given for support responses, she deserves an Oscar. [Joe is her best actor, best film, best everything!] Ya gotta love her!

Steve, you ARE lucky, because, like Bill said, you have found this support site.

Hang in there.

Best regards,

 

[Kevin M]

Fear comes from the unknown.

The more you learn, the easier it will be to handle things.
Take slow steps and don't worry about the big ones.
Kev

 

[Bunny_Rabbit]

I know I didn't ask the question, but thank you SteveE for asking it when I didn't know the words. And thank you to everyone who posted a reply.

I'm in that same "newbie" boat, and I think it's a good thing it washed up here.

 

[pegne]

SteveE

SteveE

I don't have an answer to the question you are asking but I can give you my experience. I have had a heart problem since I can remember. I don't remember a time in my life when it wasn't an issue. I do know that when I was younger I tried not to make an issue of it. I so wanted to be like all the other kids. When the time finally came that I had surgery I was 18 years old. After that I just wanted to go back to being normal again. Each time I had surgery the doctors told me I probably would never need another one. After my last one, the doctors informed us that I would probably need another one in the future so he prepared my chest for that possibility. He put a gortex shield in my chest as a guide for the next doctors to know where to cut and he put my heart in a mesh bag to make it easier to get at because of the scar tissue. I don't dwell on the fact that I need more surgery. I try not to dwell on the fact, but every now and then, I start getting "the woe is me's". Justified, probably, but it's not going to change the fact that it's going to happen "some day". So I can either decide to wait for "someday" to come or I can wake up each morning and thank God for the health He's given me for the time being. I choose to get up everyday and live as normal a life as I possibly can. This is the way that works for me. I do realize everyone is different. There is no easy answer. Please remember, though, with the advances in medicine anything can happen. By the time your time comes it might be done outpatient. You never know!!!

 

[carbomedic]

Fear Not!
I'm closing in on a year since my surgery and this site has been my best source of info and, yes, companionship. People here make you understand that you are not alone, others have and will go through heart surgeries, and more.
It's been said here before, learn all you can. And find a doctor, surgeon, and hospital that you can give your total trust in. For me, that made the wait tolerable.
You are not alone!

carbo

 

[wweir]

Steve,

Welcome to the site. The concerns you raise bring me back to when I was diagnosed with the same problem. It was like, Are you serious and what does all this mean?

Now that you are diagnosed you need to follow the advice of your care team and get regular check-ups. Do you have a cardiologist yet? In that you are living in Chicago you will have a lot of great ones to choose from.

I would suggest that you read some of the postings at this site in the pre-surgery area. You will get a pretty good sense of what to expect and the kinds of questions you need to ask your doctors.

While you are going to find yourself spending a lot of time thinking about all this, realize it is not the end of the world. The best thing you did is find out about this problem and you are doing something about it. Think about all the people that never go to the doctor and as a result they are possibly putting themselves in much greater danger than you. In addition, valve replacement or repair surgery has a 98% + success rate and getting better all the time. I for example was back at work in three weeks and feeling great.

Everyone on this site has gone through something similar Steve, in one way or another. The advice and comfort I received here gave me the courage to go forward. As I tell people who ask, the day of the surgery I was actually quite calm. Never thought I would be calm but I had confidence, I knew what to expect and I had lots of people pulling for me.

Keep us posted and keep asking questions. The more you know the better.

Walter

 

[terry40]

great question

great question

Mine was a long wait over 8 years with severe mitral regur, 23 years with progressive MVP/MVR, my family could always tell when my cardiac apts. were nearing 'cause I'd get irritable.

I would just put it out of my mind until my apts, and then I'd worry, and be anxious for the results, I worked for my PCP so I would get the results faxed over ASAP and compared them with my previous results, EF% & LV size, as long as the increase was minimal with no additional symptoms, I figure I was good to go another 3 to 6 months.

I changed Cardiologist and hospitals a few times till I found a place that I felt was doing everything possible, getting the best readings/recordings, and that I was getting the best care, and I could be in that comfort zone till my next appt.

Terry40

 

[epstns]

It's still so new. . .

It's still so new. . .

This is all still so new to me, I am still in mental shock over it. Pegne, I really appreciate your thoughts on being thankful for every day we have the good health we are enjoying. I do make it a point to give thanks each and every day for just that, sort of like saying "Thank you Sir, may I have another?"

At this point, I'm not (yet) worried about "what" needs to happen, I'm just sort of afraid of what "may" happen between now and then. I really do not want to allow my lifestyle to deteriorate, as the one "symptom" I have noticed is a gradual decline of energy over the past several years. I don't want to have to give up any more than I must to stay healthy.

By profession, I am a financial officer for a company, so I understand all of the comparative statistics the cardio's cite in telling us why we shouldn't rush off to surgery. That's the logical side of my mind. The emotional side of my mind isn't so sure it agrees. I think right now I am just trying to reconcile those two.

Also, since I am so new to this, I have only one echo result and a few consultations with my cardiologist to go on. That isn't much information or history, so I am concerned about how to "guess" the progression rate of this process. The cardio says they can't predict it, and from all of my reading I understand that. Maybe after my next check-up and echo we'll know a bit more. So far, my next cardio visit is in 3 months, not sure if he'll do an echo then or wait another 3 months to make it 6 months since the initial one. I do plan to ask him about statins, because if I can extend the asymptomatic period, then perhaps I can also extend the time before surgery -- and medical sciences will have more time to advance.

Lord, it is nice to have a chance to just ramble and vent -- AND it is especially wonderful to have a group of friends who understand the gravity of it all to ramble with.

Thank you all, many times over.