Hello. I go in Nov. 15 2016

[sheilasue]

Male 47


I'm sorry everyone if this has been said. I just got the news a few days ago that I'm at 0.6 when it should be 4. They said I am severe. It was a shock to me. Someone at my job died in the parking lot like two weeks ago the day after I went for my first visit. I had an echo cardiogram on Monday and the office called me on Tuesday and told me to come in that same day. I knew it wouldn't be good news. My family is in shock and I am so sad and am honestly terrified. I have shed many tears and can get barely through work. I am getting my ducks in order so I could tell me supervisor tomorrow. Sorry for the rant. Its like every little step I take now is like "Is this it? Am I going to die now?" I'm just so in shock. I have to turn on the radio and tv so I don't think about it.

I'm getting a St. Judes. I'm worried about the blood thinners and getting a stroke and the possibility of having a pacemaker. God I'm just ranting. I'll keep reading this forum. I'm going to look for that book somebody mentioned "Adam Pick's book, The Patient's Guide to Heart Valve Surgery and an Incision Guard"

I'm worried that I will wake up in total pain and won't stop crying. I haven't told my father yet to now stress him out. He has aortic stenosis like me but its not severe. My aunt, his sister died like 4 months ago of it because she didn't take care of it and of old age too I guess. I'm calling all my family and telling them to get checked so we can catch it early. Thank you for all your posts. I'm learning a lot. God bless you all.

 

[dick0236]

Hi saybia and welcome. Take a step back and a big deep breath.......this is not the end of the world. Sounds like you have a bi-cuspid valve.....two of your three valve leaflets have fused together. This is a genetic problem and you are wise to alert your family to a possible family problem. Spend some time "searching" thru this forum.......there are good answers to any problem you think you might encounter. Your best friend now is knowledge and not the hysteria you might encounter on the street.

 

[almost_hectic]

That initial shock is hard. Really hard. If it's too much just focus on one thing at a time so it's not overwhelming. This forum is great and the members here are a great source of knowledge and support. In time you'll feel better about it all. Not saying it's not scary, but you will hopefully feel more confident about your situation.

 

[sheilasue]

Thanks dick0236. I know I sound like a nervous ninny. I'll keep reading through the forum.

 

[DachsieMom]

I have a St Jude am an warfarin. It is easily managed and you will receive great advice on this board. There will likely be pain immediately after surgery but the good news is you probably won't remember any of it and hospitals are great at managing pain.

 

[sheilasue]

I have a St Jude am an warfarin. It is easily managed and you will receive great advice on this board. There will likely be pain immediately after surgery but the good news is you probably won't remember any of it and hospitals are great at managing pain.

Thats great to know! Thank you!

 

[mick1807]

Hi Saybia, I'm in a similar boat to you. I'm 39, healthy with 2 young kids and so much to live for, then was shocked by the news I received. I need OHS to replace my aortic valve although I don't have a date yet. I go back again on the 18th of October to probably find out when i'm up. This forum has helped with my emotions. One day i think i've got this and I can do it, the next i think my world's possibly falling apart. The fears you mentioned are the exact fears I have. Worried of the pain/rehab post surgery, then a worry of stroke from blood thinners. I think a lot of the stress is the "not knowing". We've never had to consider "blood thinners" before so it's all new to us but i'm sure once we are use to it, it'll become second nature and it won't be a big deal and we'll appreciate and love each day as much as we did prior to knowing we needed OHS. What keeps me going is knowing we can go on leading a full and normal life. Just got this speed hump to get over.
Having the surgery and getting on top of it now is a much more happier result than leaving it before it's too late. Good luck. We're in this together.

 

[LondonAndy]

Hi Saybia. I was 48 when I had my aortic valve replaced because of stenosis too, 2 years and 1 month ago today. Ended up with a Pacemaker too! But as you will find from your reading of this forum, they are fantastic at managing pain (there is a fairly recent thread specifically on this subject, with lots of people scoring the pain low). Only 1 in 10 people (I was told) end up with the pacemaker bonus, and to be honest that surgery is a breeze - it was 4 months before I even thought about the pacemaker, and I only joined a website about that (www.pacemakerclub.com) to find out what I SHOULD be aware of! And Warfarin is easier to manage than you might expect - you will doubtless have found many threads about this here, and how it is made much easier (and safer) if you have your own INR meter to test your blood at home weekly.

So yes: you have a big bump in the road ahead, but it's not going to slow you down for long. The other side is just fine. Best of luck with the hospital food ....

 

[pellicle]

Hi Saybia

I understand your anxieties about warfarin, before I was on it I shared them too. I had my 3rd OHS when I was 47 and it was a mechanical. I had already had a repair and then a homograft (someone elses) before but they (of course) failed.

I think that its very common to be apprehensive and nervous at the beginning because the medical system does very little about helping your come to grips with this and to make you feel informed and comfortable. I'm sure you'll be just like one of the people above saying those things in a years time to other new comers.

Since starting on warfarin I've done a lot of research and quite a bit of research on myself too. About a year after surgery I decided to self manage completely as I was totally disillusioned with the management system.

I don' know enough about your exact medical situation to comment specifically but assuming you're "normal" apart from the valve then I feel it will be relatively straight forward to learn how to manage yourself and get excellent outcomes.

There is much written which will scare you, but most of that is actually (sadly) misinformation or incorrect. If you would like to have a browse over a long blog post of mine about self management take a peek over here: http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

Its quite long and I expect that you'll need to refer to it now and then and (of course) ask questions here.

This community is quite diverse and we have a number of good and steady heads here to help you through Dick (who first responded) is one who has been on warfarin for many decades, showing you that it can indeed happen that you have a "normal life".

Myself, I'm an Australian and I'm about to leave Australia and return to Finland (where I also live) ... self testing makes management of warfarin so straight forward that I can (and do) just act like a normal person.

I don't think you need worry about strokes as long as you are reasonably careful in taking your warfarin and test weekly. To be frank, if your in the USA, its actually cheaper to do it yourself out of pocket rather than hassle about with insurance (if you don't happen to have any). That is exactly what I do.

Best Wishes

 

[Protimenow]

I echo what everyone else has said. In my case, when I was in my early 20s, I was told that I'll be needing a heart valve 'in about 25 years.' It didn't disturb me much, then, and as I approached the magic date, I don't recall a lot of apprehension about it. I had a family (actually, it was my wife who had the kids), and kept working, and kept an eye on how my endurance was dwindling. Perhaps it was the inevitability 'in the distant future' that kept me from stressing over it -- a hammer hadn't dropped on my head with the fear of surgery imminent.

In your case, you've probably gotten a lot of misinformation, and the idea of mortality slammed you in your face.

There are a lot more expert surgeons, with much more experience than most who were doing this kind of surgery when I had my valve replaced. The valves have improved. You surgical team will probably be expert, and know how to manage all aspects of pre-op and post-op.

What hasn't been said here is that, once you've had your surgery, and done some healing, you'll feel better. You'll have more energy. You'll probably want to do things that you can't easily do now (like, perhaps, take stairs two steps at a time or just go quickly up hills or, perhaps, just playing with your kids (if you have kids)).

The fear of warfarin is overblown. With proper management you'll neither bleed to death or have a stroke. Warfarin isn't the terrible thing that it's often made out to be. (Yeah, some rat poisons have it, but in doses that are designed for killing rats -- so what? You'll be taking low doses, designed to give you the level of anticoagulation that your body requires - you won't be taking toxic doses).

You'll also be getting a valve that can tolerate a lower INR than the one that I have (and many of us have the older valve). If you keep your INR in range (INR is the value that is used to express your level of anticoagulation), you'll be fine.

Here's what I do - and what I would advise. After surgery, get a meter (my personal choice is the Coag-Sense, although CoaguChekXS is very popular, works well, and is easier to find). Test your blood weekly -- if you manage your anticoagulation, do so carefully. Clinics can do the management, but they don't always use the appropriate logic. Record your INR results -- I use a spreadsheet that shows date, meter used (I have tested 9 different models), any changes in diet or medications or activities that I think may be related to any changes in INR. I have a blood draw once a month just to see if the blood draw and meter values are close (they don't always match) as an extra check of the validity of the meter (or, in some cases, the accuracy of the lab).

Sure, this is scary, but you shouldn't be stressing much over it. Get your affairs in order (it's always good to do this in any case) so that you'll be more comfortable when you go into surgery. Look at this as an adventure that tens or hundreds of thousands have taken before you.

You'll get through it and I'm sure that many of us will be here to help you with advice or a warm, virtual shoulder.

 

[Trinalovescats]

Hi,

My name is Trina and I am 31.I had Mitral Valve Replacement and Tricuspid Repair and was given a mechanical valve.I too am on Coumadin.
Being on a blood thinner is nothing to worry about,it's a small sacrifice for having a healthy heart.

I want to welcome you to the forum and this is an awesome group of people who are for you!

 

[Paleowoman]

Hi Saybia,
It certainly is a shock to find out you have something so serious and will need heart surgery within such a short space of time. In that sense those of us who knew years in advance were lucky in that we had more time to find things out and prepare ourselves, both physically and emotionally.

I found this book exceptionally helpful: ‘Coping with Heart Surgery and Bypassing Depression’ by Carol Cohan: https://www.amazon.com/Coping-Heart...g+with+heart+surgery+and+bypassing+depression It is full of useful information, both about heart surgery and how you can help yourself during recovery, as well as how your family can help both you and themselves. Looks like the book is no longer in print but there seem some good used deals.

 

[LondonAndy]

Hi Saybia,
In that sense those of us who knew years in advance were lucky in that we had more time to find things out and prepare ourselves, both physically and emotionally.

I was wondering about the point Anne raises here when reading some other posts recently. It is certainly true that those who are aware of what is to come can research matters and be better informed before surgery, but also many people get stressed about knowing what is to come, and depressed. In my case (aortic stenosis) although it had become clear what was needed (a replacement valve), things ended up moving very quickly when I had a "cardiac event", going in to hospital by ambulance, and so there was not much time to worry. True, I was dependent on what my surgeon told me for my decision making re tissue or mechanical valve, but I think he was fair with the pros and cons of each and, at the end of the day, he is the expert, not me. But then I was in a centre of excellence, with an award winning surgeon, and I accept others may not be so lucky. Perhaps our NHS also means some of the financial motivations for different choices in some countries are less of an issue, though the financial constraints on the service could counter some of that.

 

[honeybunny]

Welcome to the forum, saybia. It was a godsend to me 16 months ago when I was stunned by my diagnosis. We have all been where you are and we have survived. Cling to that thought and remember, your condition can be fixed. My stenosis was also severe and I feel blessed it was caught in time. No history of heart disease in my family. I went to a cardio because I was short of breath for a few months. I thought I might have clogged arteries but was not expecting a valve problem. The words "open heart surgery" are very frightening but they are not a death sentence. Keep reading and posting. We are here for you.

Hugs,
Michele

 

[Mellyouttaphase]

I have nothing constructive to add but welcome to the forum. I have found this place incredibly supportive, despite my cardiac situation being completely different.

I had forever to prepare for my surgery and dragged it out even longer yet still felt slammed with the reality of it upon waking up. I don't think you can ever be truly ready but you can certainly arm yourself as best possible for the battle ahead.

Hot tip: talk about it and lean on those around you!

 

[sheilasue]

Hi Saybia, I'm in a similar boat to you. I'm 39, healthy with 2 young kids and so much to live for, then was shocked by the news I received. I need OHS to replace my aortic valve although I don't have a date yet. I go back again on the 18th of October to probably find out when i'm up. This forum has helped with my emotions. One day i think i've got this and I can do it, the next i think my world's possibly falling apart. The fears you mentioned are the exact fears I have. Worried of the pain/rehab post surgery, then a worry of stroke from blood thinners. I think a lot of the stress is the "not knowing". We've never had to consider "blood thinners" before so it's all new to us but i'm sure once we are use to it, it'll become second nature and it won't be a big deal and we'll appreciate and love each day as much as we did prior to knowing we needed OHS. What keeps me going is knowing we can go on leading a full and normal life. Just got this speed hump to get over.
Having the surgery and getting on top of it now is a much more happier result than leaving it before it's too late. Good luck. We're in this together.

Good luck mick1807! Better to do it now than later. Lets keep moving forward!

 

[sheilasue]

Thank you every one for the support and advice. I appreciate all your posts and am feeling better about the thinners and operation as I move forward. So many phone calls and notes, and things to do. I will get over this bump in the road. I bought a DVD from Amazon called Recovering from Heart Surgery which got fgood review. I will take all your suggestions and keep reading and doing research. I'm so glad I found this forum. I was trying reddit but for some reason there is no group there. Thanks again.

 

[jwinter]

saybia I am new here also and want to wish you the best. I had this done 4 years ago under very different circumstances but was amazed how well it went. Don't know if you have had any other surgeries but I will tell you I have had worse! I sure am hoping this one goes well for both of us. Take good care of yourself and let's get out of this waiting room!

 

[sheilasue]

saybia I am new here also and want to wish you the best. I had this done 4 years ago under very different circumstances but was amazed how well it went. Don't know if you have had any other surgeries but I will tell you I have had worse! I sure am hoping this one goes well for both of us. Take good care of yourself and let's get out of this waiting room!

Good luck buddy!

 

[carolinemc]

saybia, you do not worry about a pace maker unless the surgeon says so. With having a St. Judes Valve and being on Coumadin/warifrin is not the end of the world. You can still be very active and normal life, just have to get your blood tested at least once a month unless you numbers go up too high or go too low. You will do fine, I have one, a leaflet and have had it since 2001. Still here. You will be fine, don't worry about the pace maker unless the surgeon says something on it. And come here to get the straight truth. We all cme here with all kinds of experiences and advice to calm the nerves. I have been a cardiac patient since birth, heart murmur, pretty much what you have. You are in good hand here and with your surgeon. Come in anytime to even look for us to calm your down. You will be find, you have friends here. Hugs for today.