Some questions from a new member :)

[bw00]

Hi everyone, I wanted to introduce myself on the forum and I wanted to ask some questions. My name is Berit, I am 18 years old and I am from the Netherlands. I am waiting for an aortic valve replacement. I was born with aortic stenosis, when I was 7 days old they operated on me. After that I only had some small hart catheterizations. I was looking on the Dutch forums, but there is not a lot of activity there so I decided to try a more international approach . I have quite a lot of questions and you don’t have to answer them all, but if you could give me some more information about a few of them, or your experience, that would be great! Or if you just want to say hi

1. My first question is about choosing a mechanical valve. I am 18 and so I haven’t put much thought into whether I would like to have children or not. I was wondering if any of you had experience or knew more about getting pregnant while on blood thinners and with a mechanical valve, since this is quite an important part of the choice of valve for me.
2. I have a busy social life, I am a student at university. I am afraid that I won’t be able to do anything after the surgery. How long will it be before I am able to out again, for example to a bar or club? And if any of you were in school while having the surgery, how long did it take for you to be able to go to school full time again?
3. I am looking for ways to exercise without tiring myself too much. I am only allowed to do sports that don’t make me too tired. I live in the country of bikes, so I still ride my bike to school, doing groceries etc. But do you guys maybe have any tips on staying fit while not pushing myself too far?
4. In general, are there maybe some other young adults that can share their experience? I can’t seem to find a lot of stories from the younger generation!

Sorry for any spelling or grammar mistakes I might have made, English is not my first language .

Btw, is this is in the wrong part of the forum, sorry!

X Berit

 

[Sten Osis]

Hello Berit and welcome to the forum. I had a severe aortic stenosis and valve replacement surgery in early June this year. I'm sure there will be many answers and suggestions by the end of the day.

 

[pellicle]

Hi there

My name is Berit, I am 18 years old and I am from the Netherlands.

ok ...that is a difficult age to make these choices for a female. For a male I would simply say "go mech" but I understand your points (even if as you say)

I am 18 and so I haven’t put much thought into whether I would like to have children or not.

I was wondering if any of you had experience or knew more about getting pregnant while on blood thinners and with a mechanical valve, since this is quite an important part of the choice of valve for me.

just the other day someone posted on exactly that. She found that there were some acknowledgment of the recent (last 10 years) advancement in pyrolytic carbon valves that enabled pregnancy to be considered while on anti-coagulation.

a quick google reveals more

http://www.valvereplacement.org/forums/showthread.php?16186-2nd-Pregnancy-w-St-Jude-Mechanical-Valve

http://www.valvereplacement.org/forums/showthread.php?29907-Pregnancy-with-a-mechanical-valve-story

http://www.valvereplacement.org/forums/showthread.php?19500-Pregnancy-and-Mechanical-Mitral-Valve

2. I have a busy social life, I am a student at university. I am afraid that I won’t be able to do anything after the surgery. How long will it be before I am able to out again,

Back when I was 28 (I'm 49 now) I had my 2nd OHS (which was a homograft) in December. I was operated on on the 22nd of Dec and was going back to classes on my motorbike early in February ... but you know, some things are a matter of priority. A degree is not much good when you're dead. So if it was me I'd be willing to take the time off if needed. I know that at 18 it seems like a year is forever ... but its not you know.

so I still ride my bike to school, doing groceries etc. But do you guys maybe have any tips on staying fit while not pushing myself too far?

well actually cycling is usually my tip. You can (if you know how to use the gears) determine your work output to suite exactly your fitness and its much easier to train than jogging is.

of course walking is recommended (advised / encouraged) in your first month.

In general, are there maybe some other young adults that can share their experience? I can’t seem to find a lot of stories from the younger generation!

I guess that now that I'm 48 my stories of when I was 9 and 28 are not relevant ;-) However you can find heaps of my saying what I did around and after surgery here.

Skigirl is quite young (suck-up points expected here mate!) so she can tell you about hers.


Best Wishes

 

[bw00]

Thank you for your response! And thank you for the links to the other threads, they were very helpful

 

[gerrychuck]

Skigirl is quite young (suck-up points expected here mate!) so she can tell you about hers.

Well played, my friend, well played

 

[AZ Don]

1. My first question is about choosing a mechanical valve. I am 18 and so I haven’t put much thought into whether I would like to have children or not. I was wondering if any of you had experience or knew more about getting pregnant while on blood thinners and with a mechanical valve, since this is quite an important part of the choice of valve for me.
2. I have a busy social life, I am a student at university. I am afraid that I won’t be able to do anything after the surgery. How long will it be before I am able to out again, for example to a bar or club? And if any of you were in school while having the surgery, how long did it take for you to be able to go to school full time again?
3. I am looking for ways to exercise without tiring myself too much. I am only allowed to do sports that don’t make me too tired. I live in the country of bikes, so I still ride my bike to school, doing groceries etc. But do you guys maybe have any tips on staying fit while not pushing myself too far?
4. In general, are there maybe some other young adults that can share their experience? I can’t seem to find a lot of stories from the younger generation!

Welcome to the forum.
1. There was a recent discussion of pregnancy with mechanical valve/blood thinners. I looked but couldn't find it. What I took away from the discussion was that it was possible but there would be some added risk.
2. I have children your age so I'm not so young, but I was walking 1/2 mile at a time the day I came home from the hospital. I was able to go out to stores/restaurants within 1-2 weeks from the surgery. I could just as easily have gone to a bar/club where I could sit. You may have to wait a little longer if you plan to be on your feet a long time and definitely longer if you plan to dance. Typically it as at least 6 weeks before you can drive or bicycle because the sternum needs time to heal and expect at least 2 months before your surgeon lifts all restrictions. That said, many people are able to return to work within a couple weeks.
3. Walking is always good. Depending on your level of fitness and what your Dr. says, some walks are more challenging than others, such as hills, hiking, etc.
4. Can't help you here. All I can say is that most of the stories on this site are from people older than you, and all else equal, younger people have an advantage in recovery.

 

[Ovie]

I was 25 when I had my AVR, I'm now 27. It's difficult to find a younger crowd that has gone through it today, and is still young ( no offense oldies )

1. I can't answer that as I'm a male and know nothing about blood thinners and pregnancy.

2. I understand being busy, but as someone mentioned above, a degree is nothing if you're dead. It will take time to get back to a busy/full schedule, I think you'll be able to do school sooner then later, but as far as bars/clubs, you may have to take time off. Also if you drink you're going to catch a lot of flack being on blood thinners, that is at least if you drink like a college student. Doctors don't like that.

3. I recommend Cardiac rehab after, it's a great way to work your strength up, be monitored by professionals, and get a program in place that is safe for you, and eventually be able to get back to a new healthier you with the exercise. I really can't stress enough that you do this.

4. Being young and having this surgery..it's taken a toll on me, partying and extreme/physical sports were my life previous to my surgery, and being on blood thinners.. I now cannot do a lot of the things I once loved, well not without serious risk. If you your college life or life in general is going to class and doing homework you should be fine. If you're like a mass majority of students and drink 4-5 out of 7 days of the week, then you're going to be let down. I push myself past what I should consume sometimes, and usually regret it, I'm tired, I can't hang with friends, etc. being young and having this surgery I've found to be very rough on my social life, and things I love to do, but that's just me personally. At the end of the day you'll have to look at what's important, and ultimately decide your fate with your actions.

Wish you the best, welcome to the forum, and never hesitate to ask ANY question, even if you think it sounds stupid. This site was a blessing for me prior to surgery. Get educated, learn as much as you can about your surgery and it will help you get through it much easier. Also you have youth on your side, that's a plus in recovery!

 

[AZ Don]

Here's the thread that I was thinking of. I lady with a mechanical valve just had a baby and apparently all went well: http://www.valvereplacement.org/for...81;-EXCITING-NEWS!!-Orangebrittainy-🎉

 

[bw00]

Thank you very much for your responses, it's very much appreciated! The toll the surgery will take on my social life is definitely my biggest worry. I am not even really scared of the surgery, the thing I stress about the most is that I will be missing out of activities. I am happiest when my social life is full, and after the surgery I will have to move back to my parents house in my hometown. I can't stand missing out on things and I love a good party. So that will probably be the biggest difficulty for me.

 

[heartweave]

I am also one of the oldies (57) and about to have my first replacement. I have been advised to have the biological valve even though it will be having a repeat at some point vs. being on blood thinners. There are other factors to consider.....the technology continues to advance with both surgical approaches as well as options to blood thinners. I recommend doing the research, talking to others in this forum, and especially getting as many opinions as you can from surgeons and cardiologists. Keep us posted.

Heartweave

 

[pellicle]

I have been advised to have the biological valve even though it will be having a repeat at some point vs. being on blood thinners.

advised? I would love to hear the justifications on that. Probably more of the 'well sure the old tissue valves had problems, but the new ones are much better' argument (which is claimed every year but we still see people having tissue valves fail at similar rates in the young on this forum). Its interesting in the USA that they are behind the world in anticoagulation, yet the surgical replacement businesses still push the line that redo has less risk than anti coagulation.

Its simply coincidence that they make more money out of you.

 

[Jkm7]

Thank you very much for your responses, it's very much appreciated! The toll the surgery will take on my social life is definitely my biggest worry. I am not even really scared of the surgery, the thing I stress about the most is that I will be missing out of activities. I am happiest when my social life is full, and after the surgery I will have to move back to my parents house in my hometown. I can't stand missing out on things and I love a good party. So that will probably be the biggest difficulty for me.

It is HIGHLY likely your social life will be abbreviated for a short period of time. Chances are very good your youth will aid in a rapid healing and you will be about your usual activities faster than you think.

It's good you'll be with your family while you heal as someone needs to be sure you follow your surgeon's instructions. It is very important to limit over exerting yourself and most definitely follow the lifting/pulling and pushing weight restrictions. You want your sternum to heal properly first time through or it can be a real problem.

You will be permitted to drink in moderation after you stabalize your INR. Remember to dose your diet; do not diet your dose. All that does is prove to your coumadin manager they were right in the dose they prescribed and put the blame on you if your test is out of range. BUT you do need to be consistent in your eating and drinking. If you like two beers a day, then have your two beers most days. Binge drinking will not be good nor will way too much drinking. In moderation and with consistency, most coumadin users can still have a drink.

Read the Anti-Coagulation sections on this Forum and you will get a great coumadin education. Take the time to read back old posts. The information is still current and accurate.

You will be back to your social life in short order. Don't fret about that.

 

[ManiSham]

I had my AVR(mechanical) when I was 19 years. I had a congenital VSD which had an impact on my valve. So I had to put a VSD patch and get AVR in the same surgery. I pretty much went on with my normal routine after 6 months of rest. I was working in media so I had a hectic job and I was always busy, I joined the gym as well after checking with my cardiologist.

I had a baby the same year I got married and I was 25 then. I had a well managed pregnancy and was on innohep throughout instead of warfarin. My daughter is 3 years now & so far I'm fine

I'm new to this forum as well, so HI everyone!

 

[dick0236]

Hi ManiSham and welcome. I believe you will find this forum very helpful, both for support and knowledge. Your experience going thru child birth after OHS will be of interest to a lot of young woman who visit this site.

 

[ManiSham]

Thank you dick0236. Nothing is impossible for us survivors, you need that extra faith to make it happen

 

[mcsf]

Hey Breda,

I can tell you about my experience. I am 39 now. I was born with aorta stenosis. I was 22 and attending a university when I had my aorta valve replaced. I had surgery in the summer (August) and was back at school in Late September. Once I was back at school everything was back to normal. I walked to campus (2 miles) everyday. I had a great social life. Besides a couple of weeks recovering at home it was a pretty normal summer. You are young and will bounce back quick from the surgery.

As for valve selection it is a personal choice. The options are great theses days.

Before surgery and while growing up I was limited in what sports I could play because of my stenosis. After surgery I could do anything. It was great and continues to be great. You will be quite happy after surgery -- trust me and all the other people posting.

The year before surgery I spent the summer in the Netherlands in Schagen.

MC