Hello, sorry I am sure this has been asked a lot, but I wanted to learn more about what to expect after my heart valve surgery which I will have in the next few months. I have read all the hospital materials and understand I will be in hospital for a week following surgery. I have also read I should be able to walk around (a little) after just two days. What I want to know about is what to expect when I get home - can I go to the bathroom by myself? can I get up out of bed myself? dress myself? I expect to feel tired, down and in pain but what else will I feel and what will be difficult?
I will go through these questions with my cardiologist in two weeks but want to know from someone who KNOWS. I am in London away from my parents and have really good supportive friends but want to know just how much care I will need when I return home. I am 25 years old.
thanks very much!
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upcoming valve surgery
- By Saskia
- Posted March 24, 2009 at 1:01 pm · 23 replies
- In Younger women with heart disease
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- By ally1985
- Posted March 24, 2009 at 5:56 pm
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hi saskia
i cant give you much help as i havent had valvular surgery. i am going to see a valvular surgeon in june to see my options, i have aortic valve regurgitation and mitral valve prolapse, pulmonarey valve regurgitation tricuspid valve regurgitation. all my valves are basically leaking.
iam 23 yrs old and you never think something like this can happen to you, its very scary.
i have read alot about valvular surgery on the net and my husbands best friend had valvular surgery in america 10 yrs ago when he was 20yrs old and he recoverd perfectly fine. he was at the cleveland clinic in ohio which is where i am going to see my cardio thoracic suregon in june (the same doc who performed surgery for hubbys friend). i know your thinking its a long way but i feel comfortable going to him.
i went on the cleveland clinic website to see if i could help you in any way and there are a few interviews that you can watch with the drs explaining surgery and what happens ect. so just google cleveland clinic and click on it their main page will come up.
yo said you were around a few friends so im hoping they will help you get through this, you will probably need help around the house ect and maybe even getting dressed as your sternum will probably be sore.
so try not to stay alone and have someone around you all the time if you can.
im sure you will be just fine and be strong and keep me posted on how everything goes.
lots of love
ally
- By SteelsCharm
- Posted March 25, 2009 at 9:16 am
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I cant give any advice on the issue at hand..but I can tell you that my mom had an aortic valve replacement done at Cleveland Clinic about 2 years ago. The surgery took a long time, but I know they fixed 2 holes in her heart that they found while they were doing the surgery. I can tell you that Cleveland clinic is the best place to be and so many people have gone there from around the world..its amazing what they do for people. My brother had 2 kidney transplants there as well.
My mom got around decent for just having open heart surgery I must say I give all of you respect and courage for going through a trauma like that. She was able to go to the bathroom, and we helped her out alot when she came home. She sat in the chair for most of the time with her feet up, and let us take care of her. I think you will do great also, and I wish you the best. Its your time to get pampered!
~~Keri
- By Annie7
- Posted March 25, 2009 at 10:07 am
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Barbarba Bush just had her Aortic Valve replaced at The Methodist DeBakey Heart Center in Houston. She is 83 years "young" as she was called. She was home in 7-8 days and doing great. My Uncle also at the age of 80 had his Aortic Valve replaced and Triple By-pass at the same time. He is fit as a fiddle and drove 1500 miles to Florida in January.
Best Wishes to You.
Annie
- By mariecee
- Posted March 25, 2009 at 12:31 pm
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Just to let you know I am in my 70's and had valve replacement about 2 years ago. Did not feel a thing during the operation and was in hosp for a few days then to a rehab for about a week. They had me up and walking at the hospital and I was able to go to bathroom and shower by myself. Came home w a walker and never used it after the first walk into the house. Thank God, I had no pain. Drs and nurses kept offering me pain pills but I did not need them. Had home health aides come in for a few mins for about a couple of weeks. Felt better each day and am now fine-go out and about by myself, drive, etc. Just get tired more quickly. Just had complete heart check up, stress test, etc. and all OK. Hope this helps. Since you are so much youger you should heal faster. Marie
- By Saskia
- Posted March 25, 2009 at 12:38 pm
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Thanks everyone for your responses, I really appreciate it. I am still quite worried as may not have anyone to care for me afterwards and help me with things. I have friends who will help but they will be at work in the day and have their own lives. I also have a boyfriend who wants me to stay with him and has said he will work from home and care for me, but I am not sure our relationship will stand up to that test as we have not been seeing each other long.
I have been looking into after care services here and haven't had much luck. The latest is that I have been told to try social services. It can be frustrating because so much free care or benefits / charitable organisations who I thought might help are focussed on children and the elderly - there does not seem to be much in the UK for someone my age!
Thanks again for your advice and for sharing your experiences :)
- By houston
- Posted March 25, 2009 at 11:37 pm
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Dear Saskia,
I had valve surgery as well as bypass surgery. They will not send you home alone after this type of surgery. They came into my room and talked to me. You need to tell you surgeon that you are by yourself. You can get around and take care of yourself, but you need someone to shop for you and fix some meals. You are going to be weak for awhile. Do you have home care where you are living? You can hire people here that will come in and help you. They can shop for you too. The good thing is you will be totally able to shower, dress, and do all those type of things.
- By Rudywg
- Posted March 26, 2009 at 6:47 am
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Hi! I am so glad you posted here. I wish you well and please stay connected to get all the support and encouragement you can. I had both my aortic and mitral valves replaced ten years ago! Hard to believe it's been that long. This was my second open heart surgery. My first was at the age of 25 and that was to patch a hole in my heart and repair my torn mitral valve. So here's what I've learned:
It is VERY overwhelming as you face this surgery, but as you walk through this journey, you have the opportunity to grow better and stronger for having this experience. . . and that's a good thing. Your choosing to get feedback here is very good, but you also have to choose what feedback you will apply to your own situation. What works(ed) for one woman may not work for you and that's OK.
After your surgery, in your head you will say, "Oh, my gosh, I'm so fragile and weak, but if your docs and nurses tell you to get up and move or cough or walk, do it. The faster you get moving the faster you'll recover. After my first surgery I started walking around day 6 and I remember begging the nurses to let me stay in bed. My second surgery I spent 2 days in ICU (I was slow to be weaned off the respirator) and then I went to a "step down" unit. Once there I was begging the nurses, "can I walk down the hall again?" I was home by day 6. My bedroom was on the second floor and that was not a problem. I just tried to limit how many times I went up and down stairs the first week. I had been told not to drive for 6 weeks, but I lasted until the second week I was home. I called my cardiologist -- the problem was my mom had come to visit (wasn't the best plan because she was aged and I was convinced HER driving was going to get us both killed) so he gave me the OK to drive after 2 weeks. I just limited it and had to steer carefully because there was still some discomfort.
Use your friends all you can. You are actually giving them a gift when they can help, but YOU decide what and how you need to be helped. Carepages.com is a site where you can post your journey online and people can stay in touch without being in your face. It is a great resource. Have one closest friend who you can be real honest with and who will be your "go-between." You will need rest in between all that walking. My husband and I had a signal. If people came by and I wanted them to leave, I would say, "Oh, by the way Mr. Green returned your call." That was his signal to get these well-meaning friends out. Worked great.
As far as your boyfriend. . . that should be your call, too, but it's a good thing that he even cares enough to want to help. . . some might not. My husband and I decided to not have parents around until I was discharged because we wanted to focus only on us as a couple. We lived in Chicago and our folks were in the northeast. This was our decision and it was VERY hard on my parents, but it was the best thing for us as a couple and we had the most amazing marriage because we walked through that challenge together. Our parents did support us in this but it was still very hard for them. (Sadly, after 19 years my husband died of cancer. . . but that's another whole story.)
Answers to two of your questions:
plan on wearing tops that button up front and are comfortable at first. Any discomfort will be a soreness at the site of incision and as you move your arms. I've also had a burst appendix and 2 C-sections and they were way more painful as far as the moving around. Clutching a pillow in the early days also helps keep the site of incision stable and that's a good thing. When you first get home an easier way to sit up is to have someone place their whole arm down your back and you hold onto one of their arms. Then have them pull you up in one motion. This sounds complicated but it keeps you from twisting and pulling on your chest area. Soon you'll be able to turn to your side and rise up. Expect to see improvement every day. Put this on your list of questions for your nurses while your still in the hospital. There are all kinds of tips and tricks that help. You'll move slow going to the bathroom but that should not be a problem even when you're still in the hospital.
What kind of valve surgery? Repair? Pig? Mechanical? There is loads more I could add, but my Lab is waiting for her walk!
Again, all the best to you. Please let me know if you have any other questions.
Best, Rudy
- By Saskia
- Posted March 26, 2009 at 6:58 am
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Thanks so much for the information! Yes, I am wondering if my Mum will actually make things worse getting too emotional - she is certainly making things worse for me right now in her panic and that does not help at all!
It will be valve replacement surgery and I will opt for the pig valve. Which is so upsetting to think I will have to go through this all again in 10 + years, but I would like to have children at some point and cannot do that taking the anticoagulants needed with the mechanical valve.
I have seen lovely little heart pillows that IKEA apparently sell and I am hoping the donate them as I have heard they do to some hospitals. If not I think I will buy one because it cheers me up just to look at it! (it is a red heart cushion with arms - 'huggy')
Thanks again, I appreciate all this help and support so much!
- By Anne61
- Posted March 26, 2009 at 9:09 pm
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Saskia, Welcome to the world of Women Heart. I had mitral valve replacement (bovine) in July of '07. I had just passed my 60th birthday. Don't let anyone tell you this will be a walk in the park. It will be hard work getting back to your "normal" life. Don't be upset if you have a good day followed by two bad ones. It is all part of the healing process. And if you burst into tears at the drop of a hat - so be it. That too is part of the healing process. If you are having true open heart surgery and not the less invasive kind you will be on a heart/lung machine for possibly hours. This can wreak havoc with your brain cells but it will pass. Even on your bad days you are getting better. Listen to your body. If you feel the need to take a nap by all means do so. True complete healing and recovery can take up to a year but do not dismay. Each and every day you are healing and renewing and before you realize it you feel better than you did pre-op.
There is another website you can check for valve info. It is valvereplacement.com. There is also a book available by Adam Pick "The Patient's Guide To Heart Valve Surgery" You can either get a hard copy or have it delivered to your PC. It helped me quite a bit.
As a Valve Replacement Heart Sister you will be in my thoughts and prayers in the months to come - both before and after your surgery.
Anne
- By terodac
- Posted March 27, 2009 at 1:30 pm
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I can give you all kinds of advise on this one! I am almost 2.5 years post op. I had a bentall procedure done in November of 2006. You need a lot of help after surgery, you need a lot of rest, you will need help with everything from brushing your teeth to brushing your hair. How you will feel at first, which all that does pass is tired!!!!!! You will sleep alot. I have a St Jude aortic valve and have to take a blood thinner everyday. I don't know which valve you are having replaced, but they will have you up walking as soon as you go out of ICU to step down. A web page I am a member of and will help you a lot is: valvereplacement.com, it is a question and answer page and the people there have walked the walk and can talk the talk. Good Luck! Prayers with you, please let me know if you have any questions. God Bless!
- By harryvx
- Posted June 21, 2009 at 7:08 pm
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Saskia
I realise that I am joining this discussion a few months after it started, but I have just joined this site, and this discussion is very relevant to me.
I am also due to undergo valve replacement surgery in the UK sometime soon. I have a leaking pulmonary valve, and was told that I would get a pigs valve too. I'm only 34 years old and fairly terrified about all this. I actually had open heart surgery already, when I was 7 (to repair a hole) so I'm scared about going through all that again.
Have you had your surgery yet? Please get in touch and let me know how you are doing. Best wishes, Harriet
- By Saskia
- Posted June 22, 2009 at 12:42 pm
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Dear Harriet,
I cannot really give you any helpful information because I was really lucky and my tests came back ok - they are now talking about keeping an eye on me every 4 months or so and taking it from there (possibly thinking of my initial timeframe of 2 years away). I am due for my next tests at the end of July.
I hope you are finding friends and support on this site, I found it so helpful when I was panicking. Just remember that things have come a LONG way in terms of heart surgery in the last 30 years. I have been very impressed by the NHS and the speed at which tests are booked etc.
All the best, I am not sure if you are into such things but you like to read Louise Hay's You Can Heal Your Life to help you prepare for your surgery.
Best wishes,
Saskia
- By mysparetimedesign
- Posted July 12, 2009 at 12:42 am
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Thank you very much for the positive post....I am facing a aortic valve replacement this month and am having such a hard time trying to put the possible pain in perspective, however I have had three c-sections and a burst ovarian cyst so maybe I can relate now....
debbie
- By mamaellie
- Posted July 12, 2009 at 2:23 pm
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Here is my input. Get all these items BEFORE
1. you will need a toilet seat riser. It will be very uncomfortable* getting down and lifting up..
2. Get some good reading material in place.
3. Make sure all your essential items such as dishes, canned goods, items in the fridge, pots and pans,etc. are at waist level. Bending and reaching will be very unpleasant* and uncomfortable*. Even slightly untighten jars you might be using, so you will not have to exhurt ?(Spelling) yourself.
4. Loose clothing/easy to put on very important plus a very comfortable bra - no underwire.
5. After procedure and days following make sure the area/crease under your breast keeps dry. That was a forgotten and neglected area for me and I ended up with an infection.
6. In the hospital, baby wipes are essential if you feel unsure about showering. Most hospitals do not have them, so bring your own.
7. You might consider bringing a dry shampoo with you to the hospital if your stay lasts more than 2 or 3 days and you're uncomfortable about washing you hair there.
8. Make sure your remotes have new batteries.
9. Purchase all non perishable items for your home prior that way when you ask people to shop for you it will not be for EVERYTHING.
Also, FILL YOU FREEZER. Prepare you favorite soups, cut up fresh chicken and freeze it in individual containers, etc.
10. Refill all your meds before going in. One less thing for someone to go out for.
11. Ask your doc if he will be prescribing any add'l meds, get the script and fill it before hand.
12. Call In Home Assistance Companies for rates and minimum hours, etc. I had 2 - 24 hour stays, then 1- 12 hour day, 3 - 8 hour days, and 2 - 4 hour days, and then 3 every other day for 4 hours. I created my in home care assistance as I needed.
13. Make sure you have enough pillows to keep you propped up.
I am sure there is more, but that is all I can think of at this time.
I wish you the very best.
Ellen
p.s. * PAIN !!!!!!!!!
- By mamaellie
- Posted July 14, 2009 at 3:50 pm
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Hi,
I wrote yesterday with the preparations you need to make.
Another item to have in the house when you come home is the Grabber. It is invaluable.
Best of everything, Ellen
- By Saskia
- Posted August 13, 2009 at 7:36 am
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Hi everyone!
What a rollercoaster year this has been - I finally had an MRI and was told last week that my heart has enlarged to that of a six foot man's (I am not quite five foot and very small build).
After many tears and struggles with the decision I have decided to go back to NZ to have this surgery and be cared for by my family without (too many) financial worries etc.
After getting used to the idea I am really looking forward to being back in friendly New Zealand and being amongst family and friends!
The doctors here would be operating in 4 weeks but (mostly) understand I need to go home. I had booked many trips to Europe and there is no way I am not taking those (I believe it is very important to do what brings a smile to my face!) and so I am leaving in Nov. after I have been to Barcelona :D
As I do not really have any symptoms at this stage I am comfortable with this decision.
Hope you are all well and thank you for all the advice
Saskia x
- By mysparetimedesign
- Posted August 13, 2009 at 9:43 am
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I'm in week three post op and can tell you that it hasn't been as bad as I expected.
One of the things you need is pillows, I even have a wedge shaped one that looks like this /, well not quite as high but best way to show you. The one thing I couldn't do is lay flat so this helped.
I also had more problems bending down to look inside the fridge than I did to reaching up a small amount to get a glass from the cupboard.
Baby wipes or facecloths and nice liquid body soap made bathing easier until I could get into shower, which I only do when someone is here.
The biggest thing was not being able to drive so that is where I needed people to "volunteer" because there are dctor appts. and lab tests to get to, and items to pick up and hey, sometimes you just want to go for a drive.
I also am wearing what they call a binder, which is like a large elastic bandage, or Tensor bandage, around my trunk to keep it supported and I hadn't heard of others wearing one but I'v had mine on since I woke up from surgery and I'll tell you it is very helpful. I take it off a bit to breath in this hot weather but soon am putting it back on.
I know that despite some dysfunction, don't we all have that..lol.., my family was a huge help because they generally know what you like how you are and are so worried they want to do anything to help.
Good luck on your surgery and a speedy recovery....oh, but typing on the laptop has been abit of a challenge so far !
debbie
- By mysparetimedesign
- Posted August 13, 2009 at 9:43 am
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I'm in week three post op and can tell you that it hasn't been as bad as I expected.
One of the things you need is pillows, I even have a wedge shaped one that looks like this /, well not quite as high but best way to show you. The one thing I couldn't do is lay flat so this helped.
I also had more problems bending down to look inside the fridge than I did to reaching up a small amount to get a glass from the cupboard.
Baby wipes or facecloths and nice liquid body soap made bathing easier until I could get into shower, which I only do when someone is here.
The biggest thing was not being able to drive so that is where I needed people to "volunteer" because there are dctor appts. and lab tests to get to, and items to pick up and hey, sometimes you just want to go for a drive.
I also am wearing what they call a binder, which is like a large elastic bandage, or Tensor bandage, around my trunk to keep it supported and I hadn't heard of others wearing one but I'v had mine on since I woke up from surgery and I'll tell you it is very helpful. I take it off a bit to breath in this hot weather but soon am putting it back on.
I know that despite some dysfunction, don't we all have that..lol.., my family was a huge help because they generally know what you like how you are and are so worried they want to do anything to help.
Good luck on your surgery and a speedy recovery....oh, but typing on the laptop has been abit of a challenge so far !
debbie
- By Saskia
- Posted August 13, 2009 at 9:59 am
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Hi Debbie,
Thanks for your positive feedback, that gives me some relief. I know everyone is different but I don't REALLY know what to expect, whether being 25 will work hugely in my favour in terms of recovery or if it makes little difference considering everyone's heart is in the same position.
Please keep me posted on how you are feeling in the coming weeks!
Warm regards
Saskia
PS how do you feel emotionally - depressed? I've heard bad things.
- By mysparetimedesign
- Posted August 13, 2009 at 10:33 am
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Aw, I woke up this morning wondering when those "bad days" would come and while I feel totally exhausted and frustrated today...it's the first day back to work for my partner so i'm here with my preteen all day and can't drive, thus the true problem....but I can't do anything about it so I am just getting a lift to get my blood test and coming home and just going to keep learning how to relax and just let my body heal....I think that the fact that you are young will work for you...i was the youngest on the floor when I was in, I'm 46, and because I'mnot diabetic or have no blockages etc, I think I did very well....In fact I had one nurse tell me I should make a video of what it can be like after surgery cause I was doing so well (sure didn't feel all that great at the time...lol) but I got up and moved when they suggested and it was really scary more than painful but I did it and kept moving....course I hate to sit still and wallow in pain so that might be the difference too....
Just remember that it's true every day in this case will see improvement...we don't necessarily see it but those who visited me daily could really see how well I was doing.
I did have a down day or two in hospital but it was truly from lack of sleep, and that's about the only problem I've had is getting into a comfy spot to sleep....but dont under rate that sleep as it makes a huge difference in how you feel!!!!
deb
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