First time poster!

[FiBe]

Hi, I came across this site about a month ago when i finally decided to look into the surgery i am about to have. I have never posted on a forum and i am not totally sure why i am doing it now. Up until a month ago i lived in blissful ignorance of the surgery i will undergo next week. Having read some of your amazing story's i feel comforted in the fact that there is support out there and that so many people are going through the same thing. It has also made me feel really scared of the surgery that is quickly approaching.

My story - I was born with fallots tetrology, which i had successfully repaired at the age of 3. Throughout my life i have had the usual cardiologist checks, echo's etc to monitor my heart. I have always been told i was fine. I have never been able to run due to breathlessness but i felt this was my only obstacle. Just over year ago when i when i was a couple of months pregnant my cardiologist said i still had a hole in my heart and a leak and i should see a specialist during my pregnancy. The specialist on my first echo told me i had severe pulmonary regurgitation and i would need to have surgery within a year. I was pretty shocked but didn't think about it, all i wanted was the safe arrival of my baby. He said he understood that i would want to spend time with my baby so it would be done when she was 6 months old (as i would still be on maternity leave).

So i have put off thinking about it until now! Time has passed and my surgery is next Tuesday (8th May). I really dont have a clue what is happening, i have met my cardiologist and surgeon once, after a cardio cath, in which my surgeon said he would try not to use a mechanical valve because i want to have more children (i am 30). I dont know anything about my surgery other than it is a pulmonary valve replacement and they may have to do do neck surgery because of an invisible goitre. I'm not really sure why i am posting this, what i want to know or even if i want to know!! But i would really appreciate any advice - can you dress yourself when you go home or are you totally reliant on others? Did alot of people feel down after surgery? how long before i can hold my daughter? How long before i can return to work? Did you go back full time or part time?

Thank you in advance. Any advice is really appreciated and i am sorry for the very long post!

 

[Duffey]

Hi and welcome!
You can dress yourself post-surgery. You will have limited arm/chest/shoulder movement for a bit, so a loose, button up shirt is easier to get into. I think everyone feels rather emotional following surgery and it is to be expected. There is no reason not to hold your daughter but you will need to be careful that she doesn't bump your chest. You probably won't be able to lift her until the surgeon removes the weight lifting restriction. The surgeon will also be the one who determines when you can return to work.
I"ll add your surgery date to our community calendar so you can be sure you will have our prayers and support as you go through this.
Mary

 

[kfay]

Fibe, glad you found us before your surgery. I know things are different in Ireland than they are in the states and you may not have as many choices, but, someone really should sit down and explain to you what is going on with your heart and what exactly they are going to be doing to it. Mechanical valves are very rarely used in the pulmonary position due to a higher risk of clots. The good news is that tissue valves in this position tend to last much longer than they do in other positions and they are now doing a fair amount of replacements of the tissue valves thru a catheter so you don't have to have an additional open heart surgery when it needs replacing. I would definitely speak up about only getting a tissue valve.

I also have a congenital heart condition and it is common for those of us who had surgery when we were younger to think we were "fixed" and then be shocked as adults when we find out that wasn't necessarily the case! You should check out a website called achaheart.org which is filled with adult congenital patients, many of whom have TOF. Also, check out the web innards they have on there, I feel like their is one on there mostly about TOF and the repairs they do.

 

[Fundy]

If you haven't read the threads marked STICKY in the PRE-SURGERY and POST-SURGERY forums yet, there is plenty of info there you may find useful.

Concerning being scared. I think the thoughts that the operation would extend my life considerably was what for the most part made it a happier event rather than a scarier event. And also glad that condition was found before my life ended because of it. I'm not sure what the mortality numbers look like for those requiring pulmonary replacement are. But most of the numbers for those requiring aortic valve replacement when in the condition of needing surgery and don't have the surgery; are 25% won't make it a year and almost 100% won't make it more, tham 4 years.

The operation itself isn't scary as your not aware of much. For the first few days I felt awful but this varies from person to person. I was able to dress myself well before leaving hospital and even carried one of my bags out.

Before I left hospital , surgeon said I could go back to work after 3 months. My jobs mostly a labour type job, I recall many with computer type jobs do some work after a few weeks.

I think the info in those STICKY posts reveal a lot concerning valve replacement operation experience.

 

[Mentu]

Hi, Fibe and welcome to VR. I live alone so some of your concerns were at the top of my list and one of those that worried me most was "will I be an invalid after surgery?" In short, the answer is no. I was kept sedated for almost 48 hours so I didn't really wake up until my 2nd day after surgery. I was happy to find I could get out of bed, eat breakfast in a chair and walk. By the time I went home I knew I could care for myself. The trick is that everything must be pretty deliberate at first so you move slowly. You are given a weight restriction at first to protect the incisions and to allow your sternum to heal. The incisions take about three weeks, however, the sternum takes about 12 weeks. After you return home, your activity level should pick up as weeks pass and you are likely to find that you can comfortably manage more tasks. At first you will probably not be able to pick up your child but you will very likely be able to hold her for a while. Upon first waking fully in the hospital, you will find you have no stamina and very little by the time you return home. This will improve as weeks pass if work at it. Walking and doing your breathing exercises are essential to a good recovery. Over doing things during the early weeks can dramatically slow down your recovery should you injure yourself. Some depression after heart surgery is very normal, especially, if this has been a problem in the past. This is something you might speak of with your primary doctor during this time before surgery in order to forestall it being a problem for you. Many of us find we can return to office work at around 6 weeks which is what I did. I worked an shorter schedule for a couple of weeks before returning to work full time.

Fibe, as your recovery continues, you are rewarded by feeling better. For me, recovery was actually a very good time. Even that first week home, I could do light chores and fix simple meals. Best of all, it was nice to think of having a future again. Let us know how we can be of help, Fibe.

Larry

 

[RTZdad]

Hi Fibe, welcome to the site. My hearts and prayers will be with you on the 8th. Being scared is natural, but you are going to be pleasantly surprised at how well you feel post-op. The toughest part of my surgery was in not being able to pick up and hold our four year old son. It's amazing how adept kids are understanding what is going on. I'm almost a month into my recovery and I still can't pick him up, but cuddling and lots of hugs and kisses are making up for that. Depending upon you do for work, it shouldn't be too long before you can return. Especially if you have the option to work form home. However, I would concentrate on your energy on your recovery and enjoy the extra time that you have with your family. Work will always be there. Stay strong and try not to worry too much. Everything is going to be ok! Once this surgery is over, you won't have to worry about your heart any more hopefully. I look forward to speaking with you in recovery. Think positive thoughts and find peace within your choice to correct what's wrong. It will be over before you know it. Good luck.

Tom

 

[FiBe]

Thanks so much for your messages. I think I wrote the post earlier when i was feeling a little down in the dumps and sorry for myself but am feeling much more positive now so thanks for that.

Mary (Duffey) - Thanks for answering all my questions.

kfay - Thanks for the site recommendation, I will look that up. Things must operate differently here, the doctors don't seem to advise you of the problems with your heart or what surgery entails. I thought at the least I might receive some sort of leaflet explaining the surgery from the hospital but i guess its night before surgery kind of information for them. Before i found this site i thought i pretty much had 2 months of fun (with a bit of soreness and medication) off work to hang out with my baby!! I'm very glad i decided to research it here.

Fundy - Thanks for the advice. I will defiantly read the STICKY threads.

Larry (Mentu) - That's great that you could do so much post surgery and inspiring that hopefully i will be the same.

Tom (RTZdad) - you are right, its still totally possible to spend lots of time and have lots of cuddles with her without lifting up. My daughter is 8 months old and i think she will be my motivation for getting better quickly.

 

[Debbrn]

FiBe,

I was also born with tetralogy of fallot. i had my second pulmonary valve replacement a couple of years ago. I had very good recoveries both times. Last time I had surgery on thursday, came out of ICU on saturday, and walking in the halls on sunday. I was discharged on tuesday. I had to stay an extra day because I required oxygen while a slept for a couple extra days. I was showering and changing by clothes by myself at discharge. I actually walked 12,000 steps in a single day 3 days after discharge. I had full range of motion with my arms. I was restricted to lifting no more than 5 pounds for 6 weeks to allow the sternum to heal. They also would not let me drive for 6 weeks. I was doing laundry and dishes 3 weeks after my surgery.

Feel free to ask any question.
Debbie

 

[escargome]

FiBe,
First, welcome. Now, you will be fine at surgery time. Ask all the questions that are on your mind. We may not be doctors but we will share our thoughts and opinions with you. Life will be better once you get over the surgery hurdle. While I had valve replacement surgery for a different reason than you, I have found that almost 4 years later, my life is the best. I enjoy everyday that I am on this earth and am thankful that my little cow valve is still going strong. So enjoy your wife and baby and make lots of plans for all the wonderful things you will do together once your heart is mended. Best Wishes To You.

 

[Boston Tiger]

Welcome to your new home! You have had a number of good responses to your questions already. We'll be happy to answer anything other questions you may have, or simply be here if you need to vent about something. We all recognize the fear that strikes as the fact that you need open heart surgery sinks in. The common thing you will hear from us is that the waiting and lead-up to the operation is the worst part. It will be over before you know it, and you will amaze everybody with how quickly you bounce back. That doesn't mean that it will be easy, since everyone hits some sort of bumps in the road during their recovery. But you should do great since you are so young.

Best of luck next week, and we'll be looking forward to hearing from you again.

 

[TheGymGuy]

You have already gotten a great amount of responses, but one more would not hurt.
My daughter was 10 month 2 days before my surgery. After the surgery, I was able to hug her very lightly and hold her on my knee almost the same week. My wife would take care of the baby for the most part as baby loves to climb on me and press in all sorts of places. She was such a great motivation for getting better, and I made a goal that I wanted to be able to pick her up by week 4 post op. I walked, did all sort of chores around the house, and was actually able to lift the baby around week 3. It was a blessing to lift and hold her.

Learn as much as you can about the surgery and post-op recovery. Read other people's recovery stories and after surgery stories as well as updates that then provide on weekly basis. You will do great and be able to hold the little one very very soon. Main thing for me was staying super positive, not taking it laying down, fighting daily to get better

 

[Greg a]

FiBe, a heart felt WELCOME to our OHS family glad you found the site , there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/foru...4&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/foru...t-of-questions

what to take with you to the hospital http://www.valvereplacement.org/foru...al-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/foru...House&p=218802

These are from various forum stickies as mentioned above and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf


Reading this about healthcare in Ireland it seems that the last few years has seen some turmoil http://en.wikipedia.org/wiki/Healthcare_in_the_Republic_of_Ireland

 

[FiBe]

Thanks everyone for all the great advice and lovely words of support. In the hospital now, it's 1am, surgery in 6 hours. The surgeon came round and explained the surgery which was great. He wants to use a man made tissue valve rather than cows or pigs, has anyone heard of that type of valve before?

 

[sarahsunshine]

I don't know whether you will get this before or after. I'm not sure if you are talking about a human cadaver valve or a completely prosthetic tissue valve (haven't heard of that in north america). In any case, I would trust your surgeon that he is doing what is best for you. A tissue valve should allow you the best chance of having more children with the least complication!

Best of luck in your surgery and please update us afterwards!

 

[FiBe]

Hi guys, im a bit out of it. i ICU 6 hours ago and back on the ward pain is not too bad but severe lung/rib pain when breathing in :-( anyone had much experience of that??

 

[Mom2izzy]

Great to hear that you are on the other side and on your way to recovery. Do you still have drain tubes in? That caused the most internal discomfort for me. Other than that most of my pain was in my back and neck. Did you have a thoracotomy or sternotomy?

 

[neil]

it could be you just been hit by the same truck that hit us all,if it continues ask the docs about it, but that darm truck is sure big

 

[Scott]

Sounds normal to me. It got alot better when the tubes came out and I was able to start standing and moving. By the third day things will be MUCH better.

 

[nursemom94]

Hi, I wanted to respond to this before your surgery but I just my confirmation email. I hope your recovery is going well. I was born with tetralogy of Fallot, had surgery as an infant and correction when I was 16. 40 years later I am now facing Pulmonary Valve surgery next month. I am nervous, but very ready to be able to keep up with my grandchildren. Your are in my thoughts! As you can see, you will have lots of support from this wonderful community. I would also like to recommend the Adult Congenital Heart Association (http://www.achaheart.org/). I give them credit for encouraging me to se the right cardiologist. Take care!

 

[bocco]

Fibe,

So glad to hear about another succesfull surgery. Yes your breathing pain is normal. Probably more ribs than lung. In a couple of days you should start feeling daily improvements. You are now on what we refer to as "the other side" nothing to worry about but healing and getting better.

Gary