Fears

[amber1111]

i am preparing for my mitral valve repair surgery which i guess will eventually happen somewhere in april. i found out about my mitral valve problem during the end of my last pregnancy when i went into heart failure.... i have been told that my valve is just getting worse and because my atrium is dilating and i am getting symptomatic that i need to have it repaired.

i guess i have 2 main fears....one of death....my grandma died of some unknown heart problem when she was only 36yrs old.....i am now 33yrs old.....i guess the main difference here is that i know what my problem is, and that we are in the 21st century.....(but i just cant seem to get over this fear anyway.....) and secondly, i really dont know how i can be missing in action as a mum for my 2 kids (son is 3yrs old and daughter 8 months).....they need me for everything right now......how on earth will i manage???

will the post op recovery really take upto 6 months???? i am pushing for a port hole surgery just so that i can get back into action quickly for my kids.......

 

[Bryan B]

As for your first fear...death...if you don't have the surgery premature death is pretty much a given. That is the way I dealt with the possibility of dying from the surgery. As for your children, that is a legitimate concern. You will probably have lifting restrictions (mine is 10lbs) and driving restrictions for a period of time (mine are both for 45 days). Barring complications you should feel up to doing light household chores within a few weeks. If you have a husband he is going to have to shoulder much of the load at the beginning. If you are a single mum you will probably have to have someone help you for several weeks, especially with the lifting and driving.

 

[Mentu]

Amber, you are not going to be an invalid for 6 months. By the time you leave the hospital a few days after surgery, you will already be regaining strength and that will increase rapidly. There is no denying, however, that you will not be able to care for your children by yourself when you return home. You will not be able to pick them up but there is no reason you can't cuddle them and as weeks pass you should be able to participate more in their care. For a short time, you will not be able to do normal things such as pick up your baby or carry a full laundry basket but that really should pass quickly. If you are careful to follow the guidelines your doctors will give you, you will find your strength improving and your stamina returning even in the early weeks. This will involve walking and doing your breathing exercises, eating properly and resting often while avoiding the lifting, pulling, pushing that increase the time your body takes to heal. You can do this, Amber.

After surgery, you may well be tempted to sacrifice your recovery for the "benefit of your children" but I would suggest that is short sighted. If you do not work at healing, you can hinder your own recovery then you will also be less able to participate in their lives. It may be difficult but I would urge you to dedicate yourself to getting the surgery behind you and then working to recovery to the best of your ability. You must do this for the long term benefit to yourself and your children. It may seem to you at times that you are neglecting them but, in truth, they will not be harmed and even your son will have little or no memory of what happened. Instead of asking "how will I manage?" try to pause and consider the options available to you.

Amber, you are not alone in your fears. As Brian has just said, however, it is helpful to think about things pragmatically. These kinds of heart problems get worse and unless they are repaired we die prematurely but, as you so correctly point out, we live in a time and place were our hearts can be fixed. Surgery to repair your heart will let you live a normal life to nurture your children and be a part of their lives for years to come. Who would trade that future for a short time when you will not be able to care for them by yourself?

Larry

 

[Jkm7]

Hi Amber and Welcome.

So happy you found us so we can assure you that this is truly an amazingly safe surgery for almost all of us particularly the young and otherwise healthy. The odds are so highly in your favor you need only think positively.

As the others have said, the main obstacle you will have immediately post op is lifting, pushing, pulling and driving restrictions. You will need help for about 8 weeks with those needs for your babies. You certainly can feed them, prepare light meals, wash dishes though no scrubbing pots and pans. You can do laundry by handling just a few wet articles of at a time and having someone else carry the laundry basket. You certainly can do the folding.

The advise to not sacrifice your complete healing by rushing things is so important. For the sake of just weeks, it can effect the quality of your healing and future dramatically. If you do not let your sternum fully heal from the first, it will be a problem.

I also would suggest you have a Plan "B" just in case when the surgeon tries a repair on your valve if (s)he finds it isn't possible for a good repair. You will want your surgeon to know which valve you will want implanted in the event a replacement becomes necessary. I did that with my surgeon as it was doubtful he could effect an excellent repair given the condition of my valve. It was my second OHS and my worst fear was a failed repair. I selected tissue valve and my surgeon honored that request.


Many of us here agree the worst part of all this heart surgery odyssey is the waiting for the surgery. Once you make the choice for surgeon, type of valve, date etc, and you enter the hospital, you'll do fine.

We are here to help and support you any way we can.

 

[amber1111]

Dear All,

thank you. really it is amazing how you can know something, but hearing it from those who have been in a similar situation and know and understand exactly what you must be going thru is an incredibly powerful psychological tool.

i have to travel to india for my surgery as my insurance doesnt cover surgery in the USA.

i have been trying to decide whether to take my children with me or not.

i know i need to be in India for atleast 3 weeks......

i can leave my kids with their grandparents here, but i also have the choice of taking them with me to India.

i have never spent a single day without my kids and i cant even begin to think of what it would be like to be so far away for 3 weeks plus. it would totally confuse them as well. but the upside being that they have their own house, room, park, school all here and good caregivers. i would miss them immensely and i know my head and heart would be stuck with them.

the other option is that we all travel to India. My husband thinks this is a better idea. to have the kids and the grandparents come with us. he says that 3-4 weeks is a very long time for us to disappear from the kids lives. and especially when we have an option to all travel together and be together during this time. we will all probably be happier together even in this situation. however, at the same time, im not sure if uprooting them at a time when i wont be well anyway is such a good idea........

i would love to hear what you all have to say and recommend knowing how kids are, how mums are, and how my recovery would be like.

thank you

 

[LeakyUK]

2 Useful post surgery PDF's here. I have not been there yet, and my post surgery plans will involve discouraging our hefty cat from jumping on me!.

From the documents I expect that I will be taking things very quietly for a few days post surgery but hope to get a little more active after that.

3 to 4 weeks is a long time to be away from your children, sounds like everyone should go!

http://www.valvereplacement.org/forums/showthread.php?36996-PDF-from-STS-What-to-expect-after-OHS

 

[Marcia58]

Amber,

I had mitral valve repair two years ago, with a mini-thoracotomy incision (between ribs 4 & 5 on the right side). I left the hospital five days later, with the only restrictions being; 1) no lifting over 10 pounds with my right arm, and 2) no driving while on narcotic pain meds. Six weeks post-op, I carried my 2 year old granddaughter on my shoulders for half a mile (with my doctor's OK). If you can't get a port hole surgery approved, you might want to consider asking about a "mini-thor".

I understand the "mom thing" too. My youngest was 13 when I had my surgery, and we pulled him from school and took him with us out of state. I knew he and I would both do better if we were able to see each other sooner. I'd had experience several years earlier of dealing with a family crisis while parents and children were in separate countries for five weeks. No way did I want to do that again!

All that to say, if it were me, I think I'd be looking into taking the whole family.

Marcia

P.S. I'm PMing you my private contact info, if you want to talk more.

 

[PetraS]

Hi Amber,

Hi Amber,

I just had my my mitral valve replaced due to accute endocarditis damage.
Aks your surgeon about minimally invasive method, thats how most of these repairs/replacements are done these days, and catherer method is probably next, hand in hand with valve grown out our own stem cells.
Minimally invasive method is a lot more gentle on the body and recovery is pretty fast, specially in someone as young as your are (I am 36yrs old). It has been 3 months since my surgery and I went sea kayaking yesterday and paddle boarding couple of days ago, started my yoga practice again and I am able to do all house chores withou any problem. Only needed pain killers 2 days after waking up in ICU and I only took them before my walks with therapist, then I refused them because the little bit of pain I had was pretty well tolerable.
Overall I was surprised how quick one recovers after heart surgery (it is very individual though!!!!), considering the trauma the body goes through, like with everything in nature, its miraculoes how things work.
Ask your surgeon about minimally invasive method, thats the way to go.
Petra

 

[jhammer]

Hi Amber,
I feel for you. I read a great book before my surgery and it totally put me at ease. You can download it on PDF at www.heart-valve-surgery.com. It's well written and they have journals of other patients and you can read about their experiences.

They say heart valve replacement has a 1% mortality rate, but knowing what to expect going in helped reassure me and my family that I was one of the 99 that would do just fine. Best of luck!

 

[Lynlw]

Hi Amber,
I feel for you. I read a great book before my surgery and it totally put me at ease. You can download it on PDF at www.heart-valve-surgery.com. It's well written and they have journals of other patients and you can read about their experiences.

They say heart valve replacement has a 1% mortality rate, but knowing what to expect going in helped reassure me and my family that I was one of the 99 that would do just fine. Best of luck!

Just so everyone knows you can't just down load it, you must PAY for it. and many people think you can get just as good info HERE, and would NOT reccomend the book

ps Amber had her surgery a while ago.