An Introduction...

[tabitha]

Hi All,

I couldn't find where I should post an introduction so I just thought I'd post here...hope that's OK?

My name is Tabitha and I'm 39 years old. I have had aortic regurgitation since 2005 and shortly after the birth of my second daughter (9 weeks ago) they decided it was time to replace the valve. (Well, I'm hoping for a repair but there is only a 30-40% chance of that). I've been reading through the posts and am so thankful that I found this place. It doesn't mean I'm any less terrified, but it has helped me put it all into perspective.

I am still nursing my baby but will soon have to wean. Throughout all of this I have been a bit of a medical anomaly according to my doctors. I'm going to try to pick up nursing once my recovery period is over if possible but who knows? I have a 4 year old and a 9 week old (who will be 14 weeks at the time of my surgery) and I'm most afraid of how to recover at home without being able to take care of them.

My surgery date is May 10th. And I still need to choose which valve to go with - bio or mechanical. As most of you know, this will be the hardest decision in my life to make. I mean, how do you decide between bad and bad? I really wish the decision was just taken out of my hands and I was told which one I was going to get.

Anyway, I'll be spending some time here getting to know all of you and learning everything I can in the weeks leading up to what I call HLF day (HoLeeeee F____ Day!).

I'm glad this forum is here.

 

[Bean Counter]

Welcome! You will find a lot of good information and support here, so feel free to post any questions you have. You will hear this over and over again, but waiting is by far the hardest part.

FWIW-I had my valve replaced 2 years ago at the age of 37 and opted for the tissue valve. Unfortunatley there is no "right" choice...it is whatever make you most comfortable. I went with the tissue and I wanted my post-op lifestyle to be as close to my pre-op lifestyel. With that said, you will find members that have mechanical valves that have a lifestyle is pretty close to pre-op.

 

[Mentu]

Tabitha, welcome to our community. I think its important to approach surgery with as positive a mind set as possible, otherwise, one can focus on every small problem and overlook the wonder of having a future again. Surgery is not the terrible thing that is happening to you. Rather, it is your escape from a disorder that will eventually deny you a future with your children. Surgery is your door to that new future where your children grow and you are there to encourage them. Okay, enough of the soap box.

Recovery is your time, Tabitha, and you can make of it what you wish. You may well encounter minor issues as you heal but those will pass and in a few months you will be substantially better. A good recovery doesn't just fall from the sky or pop up like a mushroom. It is the result of your dedication to healing. This is especially important for you since a difficult slow recovery may well keep you from caring for your children as soon as possible. You must accept that there will be some things that at first you cannot do. That debility will pass with the weeks after surgery.

By now, you know that right after surgery you will not be able to use your arms to hold more than a few pounds and there is no getting around that. By three weeks after surgery, the incisions should be substantially healed so during that time it is important to be gentle with yourself and allow healing to happen. It will take 12 weeks before your sternum is healed unless you have a "minimal" procedure which can reduce healing time. If you are going to be able to live a normal life, you must allow your sternum to heal completely. Through managing your recovery in a thoughtful way, by the time your sternum is knit back together you should be well on your way to living your new future.

Larry

 

[piglet]

Welcome from a fellow Canadian. Glad you found this site, it was a great comfort for me and will be for you I'm sure. By the time of your surgery I'll be a year post-op. It's not as bad as you imagine I promise, what hospital is doing the surgery?

 

[TheGymGuy]

Welcome Tabitha. Just wanted to say that valve choice is always were people spend lots of time deliberating, etc. There are lots of women on the board that will be very very helpful as soon as they see this post. I remember someone mentioning that if you want to have more kids a tissue valve might be a better choice. Though, there is a girl (woman ) on here that has had successful birth with a mechanical valve, just search for these terms and lots should come up. Also, to share my personal choice, is that I would rather avoid the re-op and "hopefully" do it once and then home-test and maintain. If you have a fairly consistent diet with veggies every meal and consistent intake of foods - I call it the healthy diet, then Vit. K would not be an issue as your veggie intake is probably similar daily. But there are also lots of pro's for a tissue valve, like no need for testing and watching your diet at all, etc. With tissue your dinner could be 5 lbs of spinach on Monday and then no veggies the rest of the week and life is just fine and dandy. With mechanical your dinner would eat 6oz of salmon with 2 cups of broccoli on Monday, 6-8 oz of grilled chicken with 3 cups of green beans and 1/2 cup of onions on Tuesday, 6 oz flank steak with 1/2 cup of Spinach and bunch of colorful grilled peppers on Wednesday, and so on and so forth. See, my diet already looks sort of like it, and though sometimes I used to go overboard on my veggie intake just cause I could, at this moment its a bit more controlled and limited but I still would get to eat whatever I want.

I want to assure you that your choice is not between bad and bad. The thing is that you will live a very happy and healthy life after this and without these seemingly bad choices you would not get such an opportunity.

 

[Duffey]

Hi, Tabitha, and welcome. I'm so glad you found the forum before undergoing surgery. Hopefully you'll get many of your questions answered as a result.

 

[Bina]

Welcome from another Canuck Will you be going to a major hospital or heart center?
My surgery was done in Montreal when I was 46, and post-op my husband worked from home for a few months since we live on
a hobby farm far from the major hospitals and I was scared out of my frigging mind
We will help you through the HFD, try not to worry, but it's good to line up lots of help for those kiddies.

 

[Greg a]

Tabitha WELCOME as soon as you speak of children I think of member Malibu82, a mother of 2 who is a couple of years post op......I will PM her and ask her to look in on the thread ....meanwhile you have a VERY personal decision to make as no one knows your lifestyle as well as you do so I would not even venture a comment or suggestion

 

[tabitha]

Thanks everyone for the warm welcome. I admit I had a few tears trickling down my face as I read some of your posts. I do think that I needed to hear a lot of that.

I am leaning towards one type of valve over the other, and I know that no one can make that decision for me, I guess I just wish it wasn't so hard.

For those that have asked, I will be having my surgery through the Aortic Clinic at the Ottawa Heart Institute.

 

[kfay]

Tabitha, Irregardless of whether you choose mechanical or tissue, I'd be sure and talk to your Dr. before trying to resume breastfeeding your baby. With a mechanical valve you'll most certainly be on coumadin and even with a tissue valve, there is a very good chance they might have you on a short (couple of months typically) course postop of it as well and I'd be concerned about an infant ingesting that through your breast milk. The other thing you want to take into consideration is whether or not you plan on having any more children. Assuming your heart is healthy, it shouldn't be a problem with a tissue valve, but is much more complicated and dangerous with a mechanical. Don't let anyone try and change your opinion one way or the other about valve choice. We all have our reasons for choosing the one we have and they are all better than the our original ones!

You aren't the first mom with young children to have this surgery done. They all did fine and worked it all out and the same will be for you.

 

[Lynlw]

Hi Tabatha, Wow you have alot goig on right now, i can't imagine all the emotions you must be going thru. I'm glad you found us.
Valve choice is always tough, but since you are 39 and want to nurse your baby and maybe have others I personally would get a tissue valve. YES a few women have had good pregancies and healthy babies with mechanical valves, BUT there are also many who had life threatning pregnancies with ER heart surgeries shortly after delivery, and Coumadin also could cause birth defects, which is why most people reccomend tissue valves for women who think they might want another baby. IF you do choose a mech valve that is why you should really plan when you want to have the baby and be careful not to get pregnant with out having things planned out with all your specilists. Plus If you plan to start nursing again, the less meds you are on I would think would be the better. I would also make sure your surgeon knows you would like to breast feed again incase they reccomend one type of incision over another.
If it helps, many of the leading centers like Cleveland reccomend tissue valve for their patients 40 and up, men and women, so it wouldn't be really stretching it to choose a tissue even if you weren't nursing your baby and thinking of others.

 

[tabitha]

We are done with having children. As much as I'd love more, we are done! I've checked with a few lactation consultants and coumadin seems to be fine as it doesn't easily transfer to breastmilk. However, I have to say that I'm only going to try to nurse her after.....if it's too painful or my milk doesn't back come in, that's OK. The pressure from the milk might be too much, the pain from trying to nurse might be too much. And this is what I am saying now...doesn't mean that 3 weeks from now I'll feel the same way. I haven't lost sight of the big picture.

I know that everyone's pain tolerance is different, but I am not looking forward to the healing because of this. (even though my surgeon says they have good drugs!) I AM looking forward to a long and healthier life and really hope that I'm around for a really, really long time.

 

[CATDOG]

Tabitha,
You are courageous and dedicated to even be considering nursing soon after surgery. Kfay has a point about the meds you will be on after surgery (and there may be more than just warfarin), so be sure to discuss that with the docs.
I'm worried that nursing is a little taxing on your body's resources, and you might just need all that you've got to recuperate yourself. I'm not an expert yet myself, but do give yourself enough time to heal.
Also I think it will be really tricky trying to not lose the ability to nurse, and also not have trouble with milk duct blockages and infections as you are cutting down or trying to maintain a reduced nursing level. Be sure to give yourself enough time to get through this stage. You surely don't want an infection of any kind so close to the surgery site. (I had trouble with that sort of thing when I tried to wean each of my babies.)
I'm wondering what the surgeon thinks of this plan and how it might affect your risks of infection, and if it would complicate the surgery in any way. If the surgeon is male, then he might not have a clue. Perhaps you should talk to a lactation consultant for suggestions.
There are all kinds of good reasons to nurse your baby and perhaps also lots of good reasons you may find that sway you toward discontinuing early this time. I hope you will be able to find a safe and emotionally comfortable compromise.
How are you doing now? Are you very symptomatic such that you are needing the surgery right away?

 

[Superman]

I'm with you, tabitha. Having somebody else make the choice is much easier. Back when I had my first in 1990, tissue wasn't presented as an option. But being not quite 18 and male, mechanical was the logical choice. I was still able to choose between the 'newer' St. Jude and the tried and tested Starr-Edwards ball and cage model. Chose St. Jude and was happy with that. Now it seems there are a few tissue and mechanical brands to choose from. Lot's to think about.

I still ended up with a re-op 19 years later - so mechanical is no guarantee against re-op. Especially if other issues arise as they did with me. Although it likely would have been at least my 3rd had I gone tissue the first time, but who really knows?

I do know warfarin hasn't been a big deal for me anyway. And I've only found a couple of things in my diet that even have an impact. Other than normal trying to be healthy and watching my weight - I really don't watch any particulars of consumption at all. Veggies come and go. I don't make any effort to pay attention to color or quantity. For me, my INR has been stable anyway. I test at home weekly. As far as impact goes - cranberry juice seems to have the biggest effect. Sends my INR way up for some reason. So in terms of giving anything up - that's been it. All that being said - everyone is different and will have a different experience.

If you do go mechanical - just keep in mind that it could take a while to get your INR level to stabilize post op. More than just diet - you'll have big change in body chemistry just trying to heal. You'll also be on different pain management medications that will have an impact. My second op seemed to take about a year to really get back to my old dose and be stable. But like many parts of this recovery process, it's difficult to pinpoint a time when things were back to normal. Seems you end up looking back and realize that things are feeling normal again, but aren't sure exactly for how long.

More than anything - just get healthy for those kids so you can get back to being Mom. I had a five month old for my last op (and an eight year old - and a five year old - and a three year old), but being male - I didn't have quite the same concerns. I was happy to be able to hold her again and play with the three boys. Life does go on after surgery, now I have another three month old son to watch grow as well (I'm a couple years out).

Good luck with your decision and your surgery and welcome to the forum.

 

[Freddie]

From a fellow Canuck, Welcome aboard Tabitha.
Love your "HLF day (HoLeeeee F____ Day!)". I can see this being used quite a bit around here......that is if you don't mind sharing this new abbreviation?

 

[Boston Tiger]

Welcome to the fixed heart club, Tabitha! You have found a big group of really helpful people who can still distinctly remember the terror that can descend on you when you find out that the HLF day is approaching. You will be told more than once that the waiting is the worst part. Heck, you have already had a response from one person who's HLF day was a little more than a week ago. As he said, don't think of your valve choice as being between bad and bad, because it is actually between good and good, since the new valve should give you a long time to enjoy your two kids. You have all sorts of adventures to look forward to there, and this is from someone who sent his youngest off to college last fall.

Let us know if you have any questions, no matter how insignificant you may feel they are. We could very well give you different answers, since everyone's experience is different. We're hoping that your story will be one of the ones where you zip right through your procedure and have a recovery with very few bumps.

 

[bocco]

Tabitha,

Welcome and ask as many questions as you like. We have people just a few weeks post op and people with much more experience.

I know that right now you must be mentally exhausted. The entire month of January just wore me out. And now I'm 2 and a half weeks post op and feeling amazingly well.

The good news is. In spite of the fact that this is a very major surgery the sureons seems to have it figured out. This is not something they have to take guesses at. They know what they are goint to do and how they are going to do it. You just show up. Get put to sleep. Wake up and recover.

Start a thread in the vavle selection forum for lots of opnions in that area.

Stick with us. We'll help you through it.

Gary

 

[Magnacruz]

Welcome Tabitha,
There may be a lot of people asking you if there is anything they can do for you before, during or after surgery. You will need help with your children and will not be able to pick them up for at least 6 weeks, but after you heal and your strength comes back you will likely be surprised about how much better you will feel than before surgery. Be aware of depression after which is very common after heart surgery. Always put positive things on your calendar to look forward to and do not focus on the negative. Good luck to you.
Phil

 

[malibu82]

hi tabitha! i feel for you. this was the worst time of my life. i had a baby in december 2008 and another in december 2009. 5 days after giving birth that second time i was told out of nowhere about my heart condition and that i would need surgery that year. i had a huge aortic aneurysm and it was a miracle i didnt die giving birth in the past two years! i didnt want to live as a ticking time bomb so 5 months later, i had it.

i felt as though it took away the joy of having my newborn and one year old. i have never really enjoyed my life after that because its always in the back of my head. i feel ripped off but extremely lucky!

i will private message you my experience with pre/post op. things i did, how it was.....i will tell you why/how i decided on what type of valve to get........ please if you have any questions ask away!!!! you can send them private or through here.

take care!!

jackie

 

[Greg a]

hi tabitha! i feel for you. this was the worst time of my life. i had a baby in december 2008 and another in december 2009. 5 days after giving birth that second time i was told out of nowhere about my heart condition and that i would need surgery that year. i had a huge aortic aneurysm and it was a miracle i didnt die giving birth in the past two years! i didnt want to live as a ticking time bomb so 5 months later, i had it.

i felt as though it took away the joy of having my newborn and one year old. i have never really enjoyed my life after that because its always in the back of my head. i feel ripped off but extremely lucky!

i will private message you my experience with pre/post op. things i did, how it was.....i will tell you why/how i decided on what type of valve to get........ please if you have any questions ask away!!!! you can send them private or through here.

take care!!

jackie

I knew I could count on you !!!!!