New to Forum and facing surgery

[dcat96]

Hi, My name is Dana...I am 36 years old mother of two young (5,3) girls. I was diagnosed with aortic stenosis in 1999, and have gone the past 7 years with no progression and thinking this was something I would just live with.....Well about a year ago echo showed it has progressed and 6 months ago I was put in the severe category and told that 85% of people in this category face surgery in 1 -2 years. I have some mild symptoms..I have far less stamina than I use to, I have some "muscle typy" discomfort in shest, no fainting or real shortness of breath unless climbing many flights of stairs. Well I go monday for another echo at Brigham and womens in Boston. After great discussion with my family and my local cardiologist I may have the surgery this spring which would alow me to miss the least amount of work ( I am a school counselor). I am scared to death, would like some help in pre surgery key questions to ask, and ANY other helpful hints questions to ask or any details I need to know. I have spent a great deal of time on line and I am becoming over whelmed!
Thanks for any advice!
Dana

 

[WayneGM]

Welcome to the VR.com community. Glad you found us but sorry you have to be going through this.

Being scared and overwhelmed is quite normal. It was just one year ago last week that I had OHS and I was plenty of both. However, we're a community of people who have either been through, are waiting to be through it, or have somebody close to in either of those situations. There is certainly lots of information and experience within this site if you explore the forums and other resources, or use the search engine.

As a matter of fact, there is a thread that just got started in the Heart Talk forum on "Questions to ask the Surgeon" you might want to check out. Here's a link to it.

http://www.valvereplacement.com/forums/showthread.php?t=20112

Also, here's a site that has downloadable booklets and videos on what to expect pre-surgery and post surgery which I found useful.

http://www.uhn.ca/About_UHN/programs/cardiovascular_surgery/cv_pt_info.asp

Wishing you the best as you embark on your journey up the mountain. Good luck.

 

[PathFinder]

why worry?

why worry?

Hey!
Why are you so afraid? If you can spend more time in this forum, you'll see, that the valve replacement is not the evil think, that we think it is.
And, about the risk of surgeries - it is over 1-2% in the more popular cardio clinics. So, there is nothink to worry about!
I will have a Aortic valve replacement in the summer, but there are no fears by me anymore, since I found the forum. YOU ARE AT THE RIGHT PLACE! It's the first important step on the way to your surgery!

Wish all good for you!

Ivo

 

[pedimed]

Hi Dana,

Welcome to the group! This is a great site and fabulous resource with a very educated and supportive membership. I also used Brigham and Women's as have others on this site and was very pleased with the surgeon (Dr. Lawrence Cohn) as well as the care provided. I am in my early 30s and had an aortic valve replacement and repair of aneurysm as well this past January.

Ask any questions you have, concerns, people here are very willing to answer almost anything as we have gone through so many various experiences.

Best wishes

Lea

 

[Susan BAV]

Hi Dana and welcome!

I felt overwhelmed by all the information here at first also. But slowly it all sinks in and makes sense. Interestingly, perhaps, recently there have been several new members here employed in education. I think we've had some members recently, even last week, having surgery in the hospital you mentioned also.

You'll want to find an excellent and highly recommended surgeon. You and he/she will need to make a decision about what kind of valve you will get and you will want to know whether you might need any other work done while they're in there. I wanted to put my surgery off for a few months to meet a new deductible at the beginning of a new year, but it couldn't wait. Hopefully your plan for having your surgery later this spring will work for you. Do you know how/why your valve is stenosed? Is there regurgitation? Be sure and get hard copies of all of your tests and procedures for your own records.

With two small children at home, you will need a lot of help for the first several weeks post-op. My surgeon wouldn't let me drive for eight weeks, but that seems a bit rare from what many others have described. There is lots more for you to learn. You will have more specific questions as other members post more things. Take care.

 

[cherbam]

Welcome Dcat96

Welcome Dcat96

I am from the Boston area also. I have only been a member for a little while but these people are the best. They know everything. I had my open heart surgery 2 yrs ago at Mass General. I had three valves replaced. What kind of surgery are you looking at? If it is OHS, the spring would probably be the best time. I think the average recuperation time is 3 mos. You will definitely need some help with your girls after the surgery because you won't be able to lift them or drive for a bit. My surgery was uneventful (which is a good thing) and I have never felt better Feel free to fire off questions. Everyone is here to help!!!

 

[dcat96]

Oh thank you for your replies

Oh thank you for your replies

wow....such quick responses (and very helpful). THe dr. Beleive my aortic stenosis is congenital, but has taken 36 years to get to this point that I need the aortic valve replaced. I also have heard wonderful thing about Dr. Lawerence Cohn and Brigham's, and I hope to be able to meet with him and get a feel for myself.
Lea, wow, so nice to meet someone else approx. my age that used same hospital, How long was your stay? Did you have any formal PT after surgery?
Dana

 

[pedimed]

Dana,

I had Surgery Thursday AM extubated by late afternoon/early eve and overnight in ICU. Transferred to the floor the following morning. Home Monday afternon. This obviously all depends on how your feeling etc. There are certain things the staff will make sure you do prior to discharging you, i.e. walking 3x/day around the nursing station and up and down a flight of stairs among other things.

As fr PT postoperatively... Nope, I did not, I have just increased my walking distance daily as tolerated. I honestly wish I had though given the positive experience many people on this site have had with rehab.

When you consut with Dr. Cohn make sure to hav a list of questions for him and that you have them all answered before you leave the office

Lea

 

[Phyllis]

Hi Dana,
Glad to see you are going to be meeting with Dr. Cohn. My husband Dick is another alumni of the Dr. Cohn fan club. You are in good hands. Lea's suggestion to have a list of questions in hand and have them all answered before you leave is excellent advice. The questions to ask your surgeon thread is a good place to start. You've chosen a great doctor and a great hospital- you will be fine!

 

[Karlynn]

Welcome Dana! I'm so glad you found us. I know you are terrified, most likely more for your babies than for yourself. But you are going to be fine - just fine!

My children were 5 and 7 when I had my surgery. That was over 15 years ago. Life has been fabulous, I'm a grandma now (see avatar!!!) and my life has been very full and very active. I know that yours will be too!

Best wishes!

 

[dick0236]

Hi Dana and welcome. I can give you little advice as to questions to ask about modern heart surgery as mine was done a long time ago, 1967. Like you, my diagnosis was Aortic Stenosis and I got a MAV when I was 31. Like you, I was very afraid and my thoughts were not very positive. That is a very natural emotion for you at this time, but if you stay around these forums those emotions will moderate. There are a lot of recent and not so recent survivors here that will be glad to answer your questions, and their advice is from "first person experience". My sons were a little older than your children when I had the surgery and I have seen them grow up, and my grandchildren grow up .....and now I've seen a great grandson born. You will be fine !

 

[ruth]

Welcome Dana!

Welcome Dana!

Welcome to the forum! There's a wealth of information here, you can find subjects by using the search function. There's a lot to learn, I know, but its all here.

If you have questions post them as a thread and sure as anything somebody here has been through the same experience. It's uncanny. This is a very caring group and no question is too silly to ask.

Get a wire notebook and keep all your questions in it. Carry it to the Dr. to take notes. Over time it will become an invaluable resource as everything will be in one place.

A range of emotions is normal and just means you're human. It's OK, we've all been through this and you'll do fine.

All my best,
Ruth

 

[marciemarine]

Dana, Welcome to our community! I remember well the pre-op nervousness. You'll be relieved when it's over and you just need yo recooperate. Best of luck to you. Marcie

 

[Philip B]

Me Too!

Me Too!

Hi Dana,

Welcome to the group!

I just recently joined myself. This is a supportive bunch of folks with some good advice pertaining to what you are preparing for.

Hope your plans to do the surgery when school's out work for you. I'm a high school principal and my thoughts of postponing my AVR until school ended this year kinda went the same way as my hopes that I could get by without ever having the valve replaced. My surgery is scheduled for March 28 due to the presence of an aortic aneurysm.

Rest assured your anxiety and concerns are not unique. I'm still dealing with a lot of this stuff. Getting my brain "wrapped around" is an ongoing process. The worry is a normal reaction.

I can tell you that finding a support group to talk to about how you're feeling is pretty important.

My wife and I come up with new questions every day. I'm probably becoming a pest with the nurses in my cardiologist's office, but they keep telling me that's okay; call again when you think of another question.

-Philip

 

[ALCapshaw2]

Welcome to our world Dana!

It's GOOD that you have been diagnosed and you are interviewing a surgeon BEFORE you become Critical and before Permanent Damage is done to your heart walls and muscles. Let your Surgeon decide on the best timing for surgery. Surgeons tend to like to operate before there is any irreversible damage.

To reiterate the risks, I hope that you will find comfort in knowing that Valve Replacement Surgery has become so advanced that first time surgeries in patients under age 60 carries only a 1% risk of stroke and 1% risk of death (vs. Certain Death if NOTHING is done to correct the problem).

There is LOTS of information on what to expect in the Pre-Surgery and Post-Surgery Forums. You will probably also want to look over the Valve Selection Forum as that is the HOT ITEM in this whole deal. Just remember that EVERY Valve has it's positive attributes and negative attributes. Eventually you will find one that 'feels like the best fit' for your lifestyle and needs. It is wise to also have a Second Choice, just in case there is a technical reason that your First Choice is not viable once the surgeon is 'in there'.

Read Away and feel free to ask any questions as they come to mind.

'AL Capshaw'

 

[susieq14]

Hello Dana!

I'm in the "waiting room" so I haven't "been there and done it" yet so I can't offer any advice about picking a surgeon or hospital or preparing for surgery or post-op but I did want to say hello and welcome you and tell you that you have my best wishes, positive thoughts and prayers as you deal with this sudden surgery news. It's lucky that you found VR.com - there is a wealth of information available here from a warm and caring group of folks who never hesitate to share and care!

I also live in Massachusetts and am hoping that when it is my time I can use either Mass General or Brigham and Womens Hospital. I've heard good things about them obviously.

So again I wish you the best!

Take Care!
Susie

 

[StretchL]

Did you have any formal PT after surgery?
Dana

Hi, Dana. Just adding my 2 cents worth here.

I also had congenital aortic stenosis with a bicuspid valve. I had surgery on December 11, 2006. I just finished a number of weeks of cardiad rehab and it was great! I honestly don't think I'd have done as well as I have had I not done the rehab three times a week, although many on this forum have also done well without it.

All the best wishes. You'll do fine!

 

[sfconstrct]

no worries

no worries

Dana,sounds like you already did you homework, sounds like you have a great surgeon, if that is the case I don't think you need to worry bout too many questions.

Maybe the basics, like many have said it is normal to be scared, I thought I would freak out had them give me some mild seditive for the nights leading up to surgery, but as I drove down the coast highway looking at the surf for the few months before surgery as I was told not to go into the water ( I am an avid surfer) I finally started thinking about what to look forward after the surgery and was tired of focusing on the surgery itself, after that I was ready.

I knew I had a good surgeon and to my surprise I didn't need the mild seditives, I was calm and ready.

Anyway next week march 16 will be my one year anniversary, I am 51, athletic, play basketball almost daily or surfed one or the other, was in the gym the day before surgery.

Anyway in on Thursday home on Monday, AVR at Cedars in L.A. back in the gym within two months, if you are relatively young and in decent shape you don't do much the first two weeks start walking more and more each day, by then maybe a half mile or more, by a month you are feeling pretty good walking more.

within two months was doing the 2 to 3 miles, later adding some stairs, back on the basket ball court in month 4, surfing in month 4 to the day, could have probablly pushed a couple days sooner, but my surgeon said my chest would be fully healed in 4 months, so to the day I was back picking up where I left off.

On my one year anniversarry next week, I will be surfing in Costa Rica for the third time since my surgery.

Don't worry, get it done and move on, a little help with the kids, the physical part, lifting etc. but you will be up and moving around in no time, now worries. Good luck.

It's good to be on the other side.

Steve Foster, San Clemente, Ca.

AVR and some arota replacement.

 

[marky]

Welcome aboard.. the best online board
YOu have already received excellent advice .. so I just Echo all that has been said.
I found this place 2 weeks before my surgery.. It was a godsend!
My kids were 7 and 9 when I had my surgery..

Ask away.. there probably isn't a question that hasn't been heard here.. and I doubt there is one that can't be answered!

Welcome