How long in the waiting room?

[Nupur]

Hi all,

I feel like this forum is where I'll get most sound advice right now : ) I introduced myself a couple of days ago. I have pretty bad mitral regurgitation and am in the waiting room right now with left ventricle seemingly normal size and function. Now, my dilemma is about work. I was taking some time off work, and I am about to return full time to a pretty demanding Engineering job at a startup company. Despite my cardiologist telling me that I should keep my mind occupied, I don't know that I have the mental capacity to work right now. I don't sleep at night and have anxiety attacks. Also, I want to spend time researching surgeons and hospitals. I feel that if I have less than a year before surgery, then my time is better spent preparing myself and my family for it. But I guess we don't know.

Are there members in the waiting room like me, and if so, do you try to lead a "normal" life until the time comes for surgery?

Any advice is much appreciated! Thanks in advance. I am not sure if this post should go to the small talk category, I'll just post it here for now.

Nupur

 

[skeptic49]

Hi again Nupur,

Everyone's different but I'm determined to lead as normal of a life as I can until the day comes when I have to have surgery. In the meantime my goal is to lead a normal life while at the same time doing the research, learning, selecting surgeons, and staying as healthy as I can.

I think getting a good nights sleep is important. If I had a problem with chronic anxiety attacks I would seek help for that. I have had them and I know they are really horrible. I have a friend who takes meds to control the attacks, which I think is a good thing.

Keep us posted on your situation.

Best wishes,

Jim

 

[Cooker]

Just do normal stuff ? Try to stay occupied and spend time with the people you love ? I know this is scary but it will be fine and you will do great ?. On a note many do not like to think about? are your papers in order? ?. I needed to do a will, living will, durable power of attorney etc ?. It was a comfort to me to know that I had taken care of everything that I could before I went into surgery?. Hundreds (a guess) of these are done a day all over the world ?. You will be fine

 

[Bina]

(Your post is just fine in Heart Talk or Pre Surgery. Ross can move it if needed.)

I understand that your mind is working overtime....I found that once I had met my surgeon and discussed my valve choice, then I was able to relax a bit knowing my "safety net" was in place. I was only working part time until 6 months pre op, then I quit working and stayed home to prepare, and at that point I was just not capable of anything mental or physical anyway.
Listen to your body and maybe try some relaxation therapy for the time being.

 

[Ross]

Well we do have personel in charge of the waiting room however, his budget seems to be amiss due to asking for a big screen hdtv and many magazine subscriptions. Check in with him and see what else he can think of to blow the budget on. And NO, No Saunas, no spa equipment of any sort.

http://www.valvereplacement.com/forums/member.php?u=614

 

[pamela]

I'm actually happy to know that the waiting room is so full. In here (I count myself as waiting even though I've had my surgeries since I plan on outliving my current prosthesis, too), it's best to get papers in order and be sure your family - ALL OF THEM knows your wishes. Don't appoint anyone to be overly firm in enforcing your wishes, be sure they have enough latitude to be reasonable, but do be sure to have a vocal and passionate advocate to speak for you when you cannot.

Once you've taken care of the business side of having your life saved, you can concentrate on the psychological and spiritual portions of living that will make survival of your disease the best thing you've ever done. Plan your future in such a manner that you can wake in each and every day to say, It's good to be alive.

Take Heart, George Carlin said: "Living is the longest thing we do." I suggest we add: "Do what you can to make it the best you ever do, too."

 

[Nupur]

Thanks for all the advice and humor! Hmm. I don't have any will or anything. I guess this is important to do. We do have the NOLO software sitting around gathering dust for 5 years. I will look into it.

My son just started Kindergarten, and I keep telling myself that I HAVE to be around for his high school graduation That helps. I am very grateful for this forum as well. No anxiety attacks in the last 2 days!

Thanks again.

Nupur

 

[kfay]

Napur, even though I had known about my heart condition my whole life, I felt like I had been hit by a ton of bricks last November when my cardio told me he thought it was time for me to have surgery. It had never entered my mind that a second surgery would EVER be necessary. I spent the next five months being a mess. I lived my days just going through the motions. It didn't matter what I was doing, my mind was always on my surgery. I got my Dr. to give me some xanax to take on the days it all became too much. After pushing my date back twice, once it was over, I realized that the anxiety of those five months had been a total waste of my time. That period was much worse than the event itself. I think being a mother caused me much more anxiety. When this valve I have now has to be replaced, hopefully my kids will be grown and I know that will help me.

You will get through it just fine. Do your research when you have time (I contacted at least five surgeons by e-mail, all responded, and I sent them all my info and narrowed that list down to the ones I wanted to meet face to face) and try to enjoy your time with your husband and child.

Kim

 

[brd]

Nupur, I agree with Kim. I was in the waiting room for eight years and consider all the worrying I did was a big waste of time. I kept working at a very demanding job up until a few days before and I am glad I did. Having too much time on my hands would not have been good for me. I'm prone to a little anxiety too and found myself much better off fully occupied.
The surgery and recovery was a breeze compared to the wait. My advice would be to live life to the fullest today and every day.
Best wishes, Barbara

 

[westie]

live normally

live normally

hi nupur

it was approx 19 months from diagnosis to surgery for my valve replacement due to mitral valve prolapse.

i was far from happy about the situation, but kept working and living a normal life untill 5 days before surgery. ( i told almost no one about my problem ) i am sure this was the best course of action.

the last thing you need is to try spending the next year preparing your family and yourself for the surgery; you will all end up stressed to breaking point.

it is much better to keep working, to retain your job and income and most importantly, occupy your mind. your cardiologist is 100% correct.

all being well, your surgery will be only a small break in your normal life; i was back at work 10 days after surgery; admittedly i had no choice, but it shows what can be done.

 

[Curtsmum]

We was in the waiting room for 18 months before my son's first surgery and then for 8 years. We are in the waiting room again. It can be hard but it is best to try to get on with life and have as much fun as possible. I have had my times of being down and i always panic near check-up times. I'm hoping that we will get another 8 years before my son needs his next surgery but you never know, it will always be on your mind but you can get through it and its nice to have vr.com to turn to. Wishing you the best of luck.

 

[epstns]

Nupur,

Welcome to The Waiting Room, the virtual room where many of us await our own turns at valve surgery.

I'm still waiting, and have known for about 6 years that eventually I will need to have my aortic valve replaced due to aortic stenosis. At first, like you, I was devastated, as this came as a surprise to me. I, too, am largely asymptomatic. What has worked for me was to do my homework and decide what my course of action will be when I do have surgery, then to try my best to put it aside. I know that sounds impossible right now, as you are probably in emotional shock. Believe me, I am a control nut who wants to know exactly what and when, but in these cases we cannot know. So, I have chosen, as others have advised you, to lead a normal life. My employer knows of the eventuality of surgery for me, but other than a couple of very close friends and family, nobody needs to know. I am at peace with my condition and my plans, so all I'm doing is living my life as normally as possible and waiting.

So far, I have been lucky enough to be able to do more than many 60 year old men can do -- I work 50 to 60 hours at a high stress job (chief financial officer at a small company that supplies parts to the auto industry), jog about 20 miles a week (a bit slower, that's all) and keep up with my family and hobbies. It truly is, at this point, mind over matter. At some point that will change, but for now it is MY life and I will continue to live it as absolutely normally as I can.

As one of the others advised, if the anxiety is getting the better of you, I would seek help. These days, the psychologists can use "behavior modification" therapy in which they counsel you about how to manage your emotions and feelings, or if necessary they have medicatins that help. Whatever it takes is what is best for you. If there is no physical reason that you cannot live life in a normal manner, then look for help to deal with the emotional parts. It is worth it.

Above all, stay in touch here at vr.com. The folks here helped me tremendously as I was struggling to learn how to deal with this, and I am sure they will do no less for you. Ask lots of questions -- the responses you will get here come from real life and truly come from the heart.

 

[Ross]

Steve did you sell the company cattle herd for the new 7.1 THX surround sound system in the waiting room?

 

[Nupur]

Had a strange and scary incident yesterday. I went to the library, and started
feeling a little weak. So I sat in the car before driving to pick up my son from
school. After 3-4 minutes, I started driving, and I felt my heart rate spike up,
don't know how high it was, but it was beating so badly I felt I was going to
pass out. Normally, when I get an anxiety attack, I can't breathe, but this time it was all about that horrible palpitation, and feeling I am going to pass out. I pulled over to a parking lot and waited, and then panicked and called my husband. He came and drove me to a urgent care. By that time, the heart rate was down. They did an EKG and a blood test for heart stress enzyme and then sent me home on ativan. The doctor said it looked like adrenalin shock.

I am going to call my cardiologist today asking what's the best thing to do if I am on the road and this happens? I was really afraid of passing out and causing an accident! Maybe that's what caused the surge of adrenalin which made it worse? Wow, being in the waiting room is not that pleasant.. Ross, I maybe asking for some of those relaxing leisure items that's not in the budget

Nupur

 

[Bina]

Before my OHS I also had random episodes of rapid palpitations.
It's scary, and once I had to call a neighbour to drive me to the ER late at night when my husband was working shift.

 

[Teresa]

Nupur,
I wanted to say hi and welcome to VR and to tell you that you will get through this. I found out in May (surgery, who me???-impossible, I work out at the gym every day!) and like you, it is a shock to hear. I have started a journal to keep track of my BP (never had a problem until they broke the news), my weight, when I exercise and how I feel during and after. It has helped me determine what may be a symptom or not.
Also, check in here as often as you can. I have learned so much!!! Althought I do not post often, I find much comfort being a member of this great group.

 

[epstns]

Ross - No, the cattle market is down as badly as all the others, so we didn't sell the herd. Still struggling along with the old 5.1 THX system, but at least it still sounds good <g>.

Teresa, I agree that an activity journal helps to know what is "usual" and what is not. I've been journaling my weight, BP and workout results for the past few years, and as long as any differences have a known cause or are short in duration, no worry. My cardio has repeatedly told me, when I asked how I would recognize symptoms, just that "You will know. It will be that obvious. If it isn't obvious, then it isn't serious." So far, so good. . .

 

[ponygirlmom]

I feel that if I have less than a year before surgery, then my time is better spent preparing myself and my family for it.

I totally agree with you. The best thing you can do for yourself is to enter surgery as physically fit as possible. Fortunately you are not symptomatic, so you will definitely be able to do this.

I went on sabbatical five months before surgery. I continued to do all the social, athletic, community and family things that I could, but everything on my schedule was flexible and cancellable except my daughter's needs, my exercise/stretching/yoga and doctor's appointments. The better I felt my house and family were prepared for my recovery period, the more relaxed I was about the surgery.

When people tell you to "keep your mind occupied," it's hard to know what they mean. If they mean that you should fill your life with enriching, fulfilling, enjoyable people and activities, then that is good advice. If they mean that you should try to fill your mind and life with any kind of clutter you can in order to avoid ever thinking about surgery, that is very bad advice.

I think you will no longer have anxiety attacks once you feel like you have taken control of your time. You may not have to quit your job to do this -- it may be a matter of attitude that says, "This is the non-negotiable time for me to ___________________________ (research doctors, make plans for my kids, exercise, meditate, prep house, visit friends, etc.)"

Keep us updated!

 

[The English Patient]

Hi Nupur,

I hope you are having a good day today. Your post really illustrates just how big this experience is. When you add up all of the pieces; a young family you love and feel a natural responsibility to, the love they have for you, your career, your plans for the future, the life you want to live, it is no surprise that you like most of us experience anxiety. I know from personal experience that horrible sense of overwhelming emotion when an attack happens.

All I know is that my attacks have a pattern and whilst they may last a while, they always burn themselves out. I can feel myself coming off the emotional boil as things settle down. In a funny sort of way I am now able to recognise the advent of an attack and detach myself from it; just allow it to happen. Thankfully for me they don't come often.

This is a big experience but the great thing for people like you and me is the number of people on this site who have come through with flying colours. Something those of us in the waiting room should look forward to...we deserve it. So keep smiling, fill your mind with work and family and look forward to many years of supporting others with your insights just as we are being supported now. Take care of yourself.

 

[Nupur]

Cardio says I'll be in the waiting room for a while

Cardio says I'll be in the waiting room for a while

I had a stress VO2 test yesterday (yikes, that awful head gear!). It seems that I did very well (don't know the exact numbers). So my cardio is saying that in spite of my regurgitation being moderate-severe, she will not recommend that I consult with surgeons yet. Instead, she will do an ECG every 6 months or earlier if I feel worse. They actually don't measure the EF and regurgitation volume. Apparently that's done only in research hospitals? They use the LV size and function as a measure, which she says is good at this point. She encouraged me to exercise and bring the stress under control. When I asked about nightly palps, she said to watch out for skipped beats and heart rate going very high and very low, all over the place ( which I take are signs of Afib?)

Thanks to everyone here for your advice. I am going back to work next week. I hope to be an active member, following everyone's journey up and down the mountain until my turn comes.

Gratefully,

Nupur