I am new, going in for surgery Feb 11th

[cherbam]

Hey Sarah,
I had three valves replaced when I was 39. My surgery was 9 hrs, so I was on the heart lung machine for quite awhile. I had all of the same symptoms as you have but until I read your post I had forgot about feeling too sick too go out with friends and family. Fast forward three years - I go to the gym 5 times a week, and now I'm the one who always wants to do stuff and my friends want to stay in!!!! Believe all of us, we know how scary it is but imagine how much better your quality of life will be after!!

 

[South Sound Sailor]

Welcome Sarah!

Welcome Sarah!

"I am now so tired that it takes all i can do to just get up. i cant sleep well at night, but i can sleep on and off all day. im always short of breath. I can no longer do the things i use to be able to do."

Like many others have already said, I'll tell you that's exactly where I'm at right now. I've known I had heart murmur all my life and only recently found out about my defective aortic valve. I've not had to quit work but sometimes all I can do is come home and collapse into bed... and that's after sitting at a desk all day long! On the weekends, I'm good for about a half day of playing with kids. I could probably put off surgery for another year but I've decided this is ridiculous. I'm missing out on enjoying life with my young kids because I'm too tired to play with them. For me, posting and reading on this site has been a big step toward helping me make big decisions. Everyone here has had tough decisions to make but you will find that many people here will offer you great help and support... especially when you decide it's time to make those tough decisions. Best of luck Sarah.

Steve C.

 

[cp172]

Hi Sarah,

Welcome to VR.There are a bunch of us in the waiting room with the same fears that you have. This site is great becuase you will hear success stories from veterans that have traveled the same path we are headed down. They are also happy to share advice and answer any questions.

Your in my prayers,

Cp from Middle Ga

 

[SarahL]

thank you steve. reading your post was like reading my own post. I cant do things with my children i use to be able to do and it makes me feel guilty. My daughter is 18 so she does take my 2 boys out and does some things with them when i dont feel up to it.
Im taking medical leave from my job early as i waitress and its getting really hard to be on my feet8 hours a day and lift all those trays. My doctor suggested i take this stime to rest and get ready for the surgery, so im listening to my doctor and my body. Plus my blood pressure that has been high all my life and that i take medicine for has started becomeing low. Friday my blood pressure was 78/58 and i was dizzy and felt horrible, they could barely feel my pulse. they would not let me drive home so my mom had to come pick me up at the doctors office. I dont understand why now its staying so low when its always been high, my doctor took me off one of my blood pressure pills. anyone have this problem?

 

[briansmom]

Sarah,
These people on this forum are a godsend.
I'm glad to hear that you were at your doc on Friday. Was it your surgeon? Low BP can mean that your heart is not supporting you very well right now. I'm with Al, I would push to move up the surgery date. My son almost died because they did not realize he had a heart problem so I am also a better sooner than later person.
BTW, your story helped me a bit. My son is going through some serious denial, etc about his condition. Reading your story helps me to understand that he is not alone in this.
Hang in there, you will feel sooooo much better soon.

 

[Susan BAV]

Sarah -

Glad you found the site; welcome! Like everyone said, the things you wrote about your feelings are pretty much like most of us have felt. Also, let me tell you that after I got the new valve, even though the first few weeks of recovery were tedious, I feel so much better with this new valve--it is amazing!

And, as also mentioned, the worse your valve gets, the faster it seems to go bad... like a snowball rolling down a hill and becoming an avalanche. When I saw my surgeon and they did the last angiogram on me, I was still trying to figure out how I could push the surgery off for a few months for a more convenient time and they said I had, "WEEKS, NOT MONTHS," to get that thing replaced.

Take care, Sarah, and post again.

 

[Debbie]

sarah

sarah

Welcome Sarah, so glad you found us!! I love my new cyber friends, I just joined a few months and everyone is so helpful and encourging to me. I'm like you I was born with a pulmonary valve problem had it fixed and did'nt think to much more about it. You waited 10 yrs. to see the doc. but I waited 20 yrs., hey you feel good why do you need to go to the doctor. About a year ago I started to get all the same symptoms as you, short of breath, tired all the time, could'nt do most of the things I used to and when I try I am always pushing my self, nothing seems easy anymore. At first I thought well I'm out of shape, I'm getting older, I need to lose a few pounds, stress, ect. ect. Well, it was my heart not working right anymore, so I'll be having my surgery in just 7 days from now! Don't worry they do these surgeries all the time and they are very sucessful. I asked my surgeon last week what his mortality rate was and he said he's never lost a patient in my type of surgery. He's in surgery 5 days a week, so don't worry o.k. Keep posting and keep reading and you'll be fine. Take care Debbie

 

[starrman]

Welcome Sarah - I knew at some point that I would need my valve and root replaced for six years, but when the cardiologist finally said it was time, it was a big shock. There was a 77 day delay between that day and my surgery for work reasons and then a cold and then the Southern California fires. I am 9 weeks post op and doing fine. I died a 1000 times during those 77 days and looking back on it, it was not as bad as I thought it would be. It was a major operation and the time in the hospital was not necessarily pleasant but you can do anything for a week. A good attitude goes a long way. I read the book by Adam Pick which details in patient terms everything prior to and after valve surgery. It was a huge help for me. You will be just fine; the doctors perform over 250,000 valve surgeries each year. Take care - Jim

 

[ALCapshaw2]

thank you steve. reading your post was like reading my own post. I cant do things with my children i use to be able to do and it makes me feel guilty. My daughter is 18 so she does take my 2 boys out and does some things with them when i dont feel up to it.
Im taking medical leave from my job early as i waitress and its getting really hard to be on my feet8 hours a day and lift all those trays. My doctor suggested i take this stime to rest and get ready for the surgery, so im listening to my doctor and my body. Plus my blood pressure that has been high all my life and that i take medicine for has started becomeing low. Friday my blood pressure was 78/58 and i was dizzy and felt horrible, they could barely feel my pulse. they would not let me drive home so my mom had to come pick me up at the doctors office. I dont understand why now its staying so low when its always been high, my doctor took me off one of my blood pressure pills. anyone have this problem?

Sarah,

PLEASE tell your SURGEON about your deteriorating condition and Low BP ASAP.

With Aortic Stenosis there is a Very Real Risk of Sudden Death.

The symptoms you describe worry me.

I apologize for being so Blunt, but as I said before, I think I got to surgery Just-in-Time. Six Hours after arrival, they put me on a Balloon Pump to rest my heart. Everyone tells me that was NOT a good sign.

IMHO, the Sooner you get Fixed, the Better, especially since you were previously scheduled for surgery in December. In my non-professional opinion, your heart could be sustaining more and more damage the longer you wait. At some point this damage can become permanent. That is why I am urging you to contact your surgeon and let him decide if you need to go in early.

'AL Capshaw'

 

[njean]

Dear Sarah,

Been there, done that! 3 times & still here to talk about it, Thank God!

The time you spend waiting to have your surgery can be "murderous". I remember having to wait 8 months before my first surgery. That was awful; I wouldn't wish that on anyone!

So hang in there my friend & take comfort in the thought that once your surgery is over and done, you will feel like a new person, ready to take on the world & all the beauty it has to offer!

Praying for you & post as often as you can; we'll reply & try to keep you entertained & distracted in the meantime! Best wishes!

 

[SarahL]

well i saw my doctor today again to check on my blood pressure, and so far taking me off one of my blood pressure medications has helped some. He cant makde my surgery any sonner as he wants me to finish my dental work first, which next weekit will be done. Then the doctor has to go our of town for a week. So we are sticking with Feb 11th. I have my good days and my bad days. so on the really bad days i just stay on the couch wrapped up in my blankets and watch tv and nap.

I do want to thank everyone on here for all the advice and comforting. I am not as scared as i was before and it is great to be able to talk to people who are going throught this. Everyone has been wonderful and now im ready to get this surgery done so i can life again. This is just the support system i needed. YOu can tell your friends and family what you are going through , but they really cant crasp it. So talking with everyone here is a big comfort.

sarah

 

[ALCapshaw2]

Yep, it is important to get your Dental needs addressed before surgery. I had a similar scheduling issue. Waiting is NO FUN.

On the bright side, First Time Surgeries on patients under age 65 have an extremely high Success Rate with a 1% risk of Stroke and 1% risk of Mortality on a national basis. Good Surgeons who perform LOTS of Valve Surgeries are even better than this! As you know, you don't even want to think about NOT getting fixed.

Best Wishes,

'AL Capshaw'

 

[marie]

Yep, it is important to get your Dental needs addressed before surgery. I had a similar scheduling issue. Waiting is NO FUN.

On the bright side, First Time Surgeries on patients under age 65 have an extremely high Success Rate with a 1% risk of Stroke and 1% risk of Mortality on a national basis. Good Surgeons who perform LOTS of Valve Surgeries are even better than this! As you know, you don't even want to think about NOT getting fixed.

Best Wishes,

'AL Capshaw'

Oops I'm 66!

 

[ALCapshaw2]

Oops I'm 66!

Hmmm... I suppose you could add 1%

(I have NO idea really, but would not be overly concerned)

Best Advice: Ask your Surgeon for his 'best guess' err... "assessment".

'AL Capshaw'

 

[SarahL]

Ive been reading everyones advice about using a recliner, which i was kindof leaning on the idea for awhile. So i bought one today. I got a leather recliner, and its comfortable with enought support and it wasnt hard to get in and out of. The lady i bought it from had also had heart surgery and she used it when she was recovering and she said it was a life saver for her. She only usedit during recovery and it is in almost new condition. I didnt want to fork out money for a new one, and she only charged me 50 dollars , when ive looked at them brand new and they are expensive. Its a lazy boy, she was asking alot more, but she said since i was having surgery she wanted to give me a great deal.

Today was one of my good days. So i stared doing some cleaning around the house. I feel like im nesting again like i did before i gave birth to my children LOL I want to make sure the house is clean and in order before surgery. Of course after only a little bit i became extremely tired and short of breath, so i passed out on the couch for 3 hours. Ill probably pay tomorow for what i did today, But the only time i can get things done is on the days i dont feel so bad which is few and far between.
Hope everyone is doing well.

 

[Debbie]

sarah

sarah

Sarah, I just bought a recliner yesterday too. I love it and i know I will be spending alot of time in it. I checked out the Lazeboys and they are expensive! The cheapest leather one new was 800.00 dollars so that was out of the question. Remember keep posting and reading and you'll be fine. Debbie

 

[ALCapshaw2]

SUCH A DEAL ! That lady was very kind to you as another OHS candidate. I expect it will serve you well during your recovery.

Will someone be available to attend to you during your first week (or two) at home? You will be VERY WEAK that first week (or two) and have a 5 lb lifting limit for several weeks until your sternum heals (6 weeks to 85% strength).

It is also a good idea to have someone with you 24/7 in the hospital to make sure you are getting the right medications in the right dose (and NOT double dosed which can happen if a 'substitute nurse' comes and fails to record administration of your medications) and to watch for signs of 'problems'. It helps to have 2 or 3 people keeping an eye on you in shifts, 'just in case'. I expect the nurses are also more careful when they know they are being 'watched'.

'AL Capshaw'

 

[SarahL]

My mother will be with me the whole time. I live only 1 mile away from the hospital so she is going to stay at my house and come back and forth to the hospital, my best friend of 23years is going to help my mom. they said they would be taking shifts . When i come home my mom is going to stay with me alittle bit and my 18 year old daughter has graduated from high school last year, so she said she would be with me for the first couple of weeks. Someone has to help with the kids, housework, cooking , cleaning etc. so she will be the most help. My neighbors have offered to help when i come home.
I just have a concern about my dog. I have a 65 pound boxer and she likes to sleep with me, , tries to be a lap dog. Im concerned about how to keep her off me when i first come home. Where ever i am thats where she wants to be. She has never been crate trained so i dont think putting her in one will work. Im trying now to teach her that she cant always sleep with me, but she is spoiled and is a mommys girl. After all her name is Baby LOL.

 

[njean]

My mother will be with me the whole time. I live only 1 mile away from the hospital so she is going to stay at my house and come back and forth to the hospital, my best friend of 23years is going to help my mom. they said they would be taking shifts . When i come home my mom is going to stay with me alittle bit and my 18 year old daughter has graduated from high school last year, so she said she would be with me for the first couple of weeks. Someone has to help with the kids, housework, cooking , cleaning etc. so she will be the most help. My neighbors have offered to help when i come home.
I just have a concern about my dog. I have a 65 pound boxer and she likes to sleep with me, , tries to be a lap dog. Im concerned about how to keep her off me when i first come home. Where ever i am thats where she wants to be. She has never been crate trained so i dont think putting her in one will work. Im trying now to teach her that she cant always sleep with me, but she is spoiled and is a mommys girl. After all her name is Baby LOL.

Hummm, your doggie might be a bit of a problem especially if she thinks she's a "lap" dog & sleeps with you. For your own sake, you might have to lock her up in the laundry room or in another room in your home at night, because you certainly don't want her pouncing on you & injuring your newly sutured sterum! You certainly cannot afford this. Also, make sure whatever you do, that you don't go try to lift her or anything else for a long while!!
I know this will take some getting used to especially for Baby, but mommy needs to take care of herself! Best wishes!

 

[shenews]

I'm just an hour away from you

I'm just an hour away from you

Hi Sarah L,
I had my aortic valve replaced at Sentara Heart in Chesapeake on Dec. 5 and I am doing fantastic! I, like you, was very scared before surgery, but through the prayers of many people, God gave me a wonderful peace. If you are having the surgery at Sentara Heart, the care there is wonderful. Dr. Rich was my doctor, and he was fantastic.
Sarah, I was a single mom for over 17 years prior to remarrying in 2000. I know how you are feeling. Remember that this surgery is your gift not only to yourself, but to those three children. You deserve to be around a lot longer for them, and you will!
I also had concerns prior to my surgery about my dogs. We have four Boykin Spaniels, and too many sleep in the bed with us as well. Before surgery, I trained our dogs to respect the fly swatter. When they did something bad, I pulled out the fly swatter and patted them on the butte and scolded them for their actions. It didn't take long before they knew what the fly swatter was for and they respected it. When I came home from the hospital, I was scared they might hurt my chest. All I had to do was hold the fly swatter in my hand, and they didn't approach my chest. When I was in a position where I could love on them, I did so every chance I got. I would never hit my dogs, but I needed something to keep them at bay from my chest. The fly swatter worked. They are the loves of our lives since our children are all grown and gone.
Sarah, I am only an hour from you. If I can help you in any way, please let me know.
You are in my prayers. May God bless.