Got my date .....October 19!!

[mick1807]

I've been on the "waiting list" now for about 2 years now. My last cardiologist appointment recommended I speak to the surgeon.

i have a bicuspid aortic valve which will need to be replaced. I have no symptoms whatsoever so struggling to get my head around what I'm about to put myself through as I feel so good. BUT my heart is enlarged and the valve is leaking. I'm at the stage where the surgeon is still leaving the decision up to me but says something will need to be done within 3 years. I have no other issues.

He says he will try and repair it first but most likely will need a mechanical valve as I'm 40.

So I've decided to bite the bullet and get it done now. The surgeon was a great guy and filled me with confidence. This site has also given me confidence.

Having said that and I see many posts where others are fearful , I am scared of not making it through the surgery as that's scary stuff what they have to do to you.

Recovery is a concern as I'm not a fan of pain. Haha.

I also fear controlling my INR levels won't be as easy as people make it out to be.

anyway thanks for listening. I intend to post more, particularly after surgery to share my experiences as I've really appreciated others sharing their experiences as it's given me some confidence.

 

[Zoltania]

Hi "Mick,"

It's really scary to never have had surgery (or at least surgery like this) and then to face it. Fear of the unknown is huge.

Logically, you know that the risks are low (especially for someone as young and healthy as you are), that lots of people have gotten through this very well, and that you will be helping yourself by getting things fixed before any permanent damage can occur. Of course the emotional mind isn't logical, so these statements probably don't seem too helpful.

You're doing a good thing for yourself by learning here from others' experiences. Read the post-surgery stories, read the sticky topics in the pre-surgery forum, and you'll be well prepared. Don't be shy about asking questions, since there are many people here who will be happy to help. You will come through this experience, unthinkable as it may seem now, and you will be stronger for it physically and mentally. You will probably surprise yourself by how well you can cope.

 

[mick1807]

Thank you for the response. Appreciate all words of encouragement that give me confidence. Some days I'm like it's all good, I'll be right it's just a bump on the road of life, then other days not so confident. That bump becomes a wall.
I'm by nature a very confident and positive person so need to keep that mind set going.
Reading over people's stories have given me confidence. Dreading the first couple of weeks, that seems to be tough but learning you need to just take it one day at a time and I will get back to "normal". Normal is pretty good as I am a fit person.
I'm probably feeling just as anxious about controlling my INR levels as I am the surgery. Once surgery is done, it's done but a lifetime of keeping INR levels in a specific range seems harder than what appears to be reading on here. Time will tell.
Thanks again.

 

[Agian]

Mick, I'm coming up to a year. It takes a while to get over the psychological trauma. Physically, I feel 'normal' now.

All the tablets I take are important. Warfarin is just the olive in the Martini. Taking tablets reminds us of our fragility, but it is what it is. Most of my pain was emotional. I felt and sometimes feel like a reject for needing this contraption. It is indeed irrational, but hey, life goes on. 'You're sooo brave...' Gimme a break. It's not like we have choice.

With ya bro.

 

[pellicle]

Hi

I'm probably feeling just as anxious about controlling my INR levels as I am the surgery. Once surgery is done, it's done but a lifetime of keeping INR levels in a specific range seems harder than what appears to be reading on here. Time will tell.
Thanks again.

the hardest part for me was to take the step away from being managed to managing myself. I had a lot happen after my surgery and so it perhaps took longer than it would have if I'd not had that.

Ultimately I find that managing myself is far easier and has far less issues than fighting with clinics. Of course as an Australian I"m not bound by silly insurance regulations.

I'm sure you've read my blog posts on managing my INR, while long and detailed the short answer is "its not hard". (here if you haven't read it already).

I'm happy to assist if you're willing to work with me and give it a go when the time comes. Anyway, its not like I'm unique or alone, its a growing trend (to self manage) in Europe too....

As Agian says, its all the psychological stuff that hurts the most ... having had 3 OHS's now (2 as an adult) I can surely attest to that too.

Best Wishes

 

[mick1807]

Agian cheers mate. Appreciate the support. There's so much to take in. Pretty overwhelming. I just keep thinking getting this done is better than the altnerative. That mind set is keeping me strong.

pellicle I actually asked about home testing and got a stern no. Initially go to the clinic weekly, then bi weekly & eventually monthly once your INR is stable. But what's stable? If I eat something rich in vitamin K one month and not realise it, how do I know it's still stable?

Is once a month often enough to feel confident nothing sinister is happening. These thoughts are more concerning than the op itself.

Appreicate all the feedback. You guys do a great job with your regular posts, great attitudes and great advice. I'm sure I'll have more questions as the date nears. Thanks.

 

[dick0236]

I actually asked about home testing and got a stern no. Initially go to the clinic weekly, then bi weekly & eventually monthly once your INR is stable. But what's stable? If I eat something rich in vitamin K one month and not realise it, how do I know it's still stable?

Is once a month often enough to feel confident nothing sinister is happening. These thoughts are more concerning than the op itself.

.

Several years ago, when home testing was relatively new, I had the same response from my docs. I bought a meter and tested at home weekly while testing monthly at the lab.......and I kept a good record of the results. I periodically showed my spreadsheet to my doc and he now agrees that more frequent testing seems to provide more consistent INR with fewer warfarin adjustments. I normally make only a couple minor wafarin adjustments annually......mostly I just make minor diet change.....or no change at all and my next weekly test turns out OK.

The INR range spread, either 2-3 or 2.5-3.5(mine) is pretty broad and I find it relatively easy to stay in that range with little effect on my lifestyle.

FWIW, I've had no "bleeding events" in my 50 years on warfarin and only one clot(entirely my fault) many years ago(43) when INR management was pretty primitive.

Good luck

 

[pellicle]

Hi

pellicle I actually asked about home testing and got a stern no. Initially go to the clinic weekly, then bi weekly & eventually monthly once your INR is stable. But what's stable? If I eat something rich in vitamin K one month and not realise it, how do I know it's still stable?

Stable is something that people talk about but usually have no strict definition of. My own INR is always a bit up and down but my surgeon considers this stable (and is very pleased with my charts which I print and take when I go to post-checkup meetings). Here are some sample graphs from my weekly measurements; [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/8\/7682\/16876569857_0ca90610f2_c.jpg"}[/IMG2]
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/2\/1541\/25455579376_2a7ed70af3_c.jpg"}[/IMG2]
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/1\/656\/32000655005_d9aa85c95b_c.jpg"}[/IMG2]





as I wrote on my blog post:

So my Valve Brothers and Sisters if you are still reading its all good news. I encourage you to go to eBay and buy a Coaguchek XS (or simmilar) get online for strips and look after your health, for your self by yourself!

In a nut shell what I do is:

1. sample my blood to determine my INR
2. write that down (spread sheet, but book works)
3. determine if its been over time falling or rising (a graph on a SS really helps)
4. make a small adjustment to my dose if needed to correct for my INR falling or rising (usually adjustment isn't needed and its better to leave it alone, more later)

That's it ... compared to a diabetic, life on warfarin is really simple.

Is once a month often enough to feel confident nothing sinister is happening.

I don't believe that it is ... I test weekly, because weekly is the reference standard that all of the best INR monitoring is done against. A lot can happen in a month. You could start new drugs and forget about checking for interactions ... just to name one. If you examine the above charts you'll see at least one event (for which I have as yet no sure cause) which if I had not caught it would have brought me to harm.

Indeed when On-X were testing their low INR protocol they chose weekly testing.

Roche hint at it on their manual for their new Coagucheck...
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/5\/4161\/33740683683_b1d80ebf8f_c.jpg"}[/IMG2]


By testing weekly you essentially get a heads up on any changes ... its like checking the rear vision mirrors before changing lanes.

People talk about saving money by reduced testing ($6 per test strip) but seldom mention how much would they would pay to reverse an injury...

Lastly the following graph is from a large study and shows the patient incidence of problems vs INR .. you can see that anywhere between 2 and 4.5 is the "ideal" place to be:

[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/4\/3868\/14626794599_c646b1872d_b.jpg"}[/IMG2]

indeed if you manage your INR well and stay in range all the time (meaning >90% of the time) then you will have essentially no more issues with bleeds or clots than the age related "general population"

Thanks.

welcome

 

[mick1807]

@**** you're story is great. Nothing like seeing a 50 anniversary on here to give you confidence that if you look after yourself you can live a "normal" long life.

@pecille that's some great data there. Maybe test weekly and go to the lab once a month for reassurance might be the way to go.
Besides vitamin K does anything else throw your levels out? I.e drinking, if you're sick, colds/flu, exercise

 

[pellicle]

@pecille that's some great data there. Maybe test weekly and go to the lab once a month for reassurance might be the way to go.
Besides vitamin K does anything else throw your levels out? I.e drinking, if you're sick, colds/flu, exercise

I think that is a good strategy. Perhaps fortnightly even.

You can always do testing more frequently at first just to get an idea (as I and others have done). I have done twice weekly testing for a few months a while back just to see if I could identify issues with foods. I didn't find anything. Graph it and it reveals a lot

Vitamin K (food sources are relatively minor influences) are the main ones, but trivial really. I have found paracetamol to be an influence (raising INR if on larger doses for a few days).

All other factors are best determined by your own measurements. For instance, alcohol isnt significant for me (unless drinking a bottle of red myself) but others report differently.

Approach it with a rational organized mind and it all falls into place

 

[mick1807]

All great advice. Really appreciate it. I'm a very basic eater and fairly consistent (same old same old for me) so hopefully that helps me.
im sure I'll have more questions as the date nears. Thanks again for everyone's advice and encouragement.
Im getting so much from people's recent experiences with surgery which is a massive help also. It's a great forum.

 

[dick0236]

Besides vitamin K does anything else throw your levels out? I.e drinking, if you're sick, colds/flu, exercise

I used to drink pretty heavily and it did not seem to affect my INR (they called it "pro-time" back then) and I was only testing once/month or so with blood draws at a lab. I stopped drinking before the INR system came on line but folks on here report that a few drinks has little effect on INR.

Some meds can/will affect INR, especially some anti-biotics. It is best to check INR more frequently when on anti-biotics....and to monitor new meds for any kind of interraction.

Bad colds, flu etc that cause diarrhea and loss of body fluids can cause erratic INR problems. These problems do not persist after illness is over.

Not sure about exercise. I have always done normal work, play or exercise with no problems.....but I don't sweat a lot, even doing moderate exercise....so I don't lose a lot of fluids thru exercise.

I've never had anything affect my INR in a sudden dramatic way or cause INR to get seriously out o range since I started testing weekly.

You just learn a little, bit by bit, of the simple adjustments needed in living with warfarin.......but it REALLY is no big deal.

For me, there are only two absolutes:
a) take the pill as prescribed
b) INR test on a routine basis

 

[mick1807]

That does all seem pretty straight forward. Consistency seems to be the key.
Hopefully he can just repair my valve and I won't have to worry about all that just yet. Seems unlikely though.

 

[mick1807]

Ok so just 3 days to go now till the big day. Had every emotion under the sun. Still nervous but right now biggest emotion is just wanting it over and done with. It's been a long wait.

Any last minute advice/tips would be much appreciated to ease the nerves that I do have.

I look forward to coming back on here shortly after surgery and give a detailed run down on how I went and what to expect for others who are waiting. I know these stories have helped me greatly and given me confidence that I can do this.

 

[pellicle]

...Any last minute advice/tips would be much appreciated to ease the nerves that I do have.

go get some KimChi from the local Korean shop ... have a bit on the side with meals as soon as you're out of ICU ... it will help restart the lower colon in a much more natural way than the stuff they give you in the hospital.

I recommend this always, and got some for an elderly (German) friend of mine (here in Australia) after him being in ICU for a week, having been IV and then tube fed for a week and being unable to pass stuff (out #2) without "interventions".

It was successful and he actually likes it now too

 

[jwinter]

mick, a year ago I was facing the surgery also (Nov. 1) and all your feelings are totally understood on this forum. My surgery was my second one in under 5 years(porcine valve failed) and I was maybe less afraid but more overwhelmed (why me? again?) I did read a book on meditation(not a deep meditation, but breathing exercises etc.) and that helped me when I was really anxious.

I will also tell you that a couple times before first surgery I could not wrap myself around it. A nurse sat down with me and gave me the best advice EVER. She told me this surgery IS a big one and that it was more than I or most people can deal with on their own. She said it was time to hand it over to a higher power. She did not say God to me but He is my personal higher power. I am not an overly religious person but am spiritual so that is what I did. I prayed for myself for calm and for God to help guide the surgeons hands It immediately helped calm me.

All advice here on this forum is good for the most part. Use that breathing spirometer after surgery as it is very important and do whatever it takes to get those insides moving again. Listen to the doctors and nurses and don't be afraid to speak up.

I wish you well and we do like hearing afterwards how it all is going. Take good care and consider this a gift of life given to yourself. You deserve it!

 

[mick1807]

Thanks for the responses guys. I'm taking everything on board & thats giving me the confidence to do this. Not even overly afraid of the dying part. I have a great surgeon who has filled me with great confidence in that aspect. He's very experienced and a star at what he does. Together with my fitness and age I'll get through it.

I'm more wondering what it will be like when I first wake and the following day 1 & 2 after the operation. What's the hardest part? Is it overall dealing with pain? Is it tough to just breathe? It is hard to just get up out of bed? It is hard to even walk? Does it hurt to do these things or is it more a case of it just wears you out quickly?

I know you take it one day at a time and each day gets easier but what's the toughest part to get through initially?

 

[Zoltania]

Any last minute advice/tips would be much appreciated to ease the nerves that I do have.

If you've read the sticky threads and the post-surgery stories in the archives, you should be well-prepared for the hospital experience. At the moment I can't think of anything that I wish I had known ahead of time. The forum prepared me well.

For the post-surgery experience, I would say to take it easy and not to try to push recovery too fast. Yes, do your walking and everything else that is recommended, but don't try to do more every single day than you did the day before. It's two steps forward, one step back. You will get where you're going just fine even without pushing it.

Best wishes for the 19th; you'll have a lot of people thinking of you and wishing you well.

 

[Zoltania]

I'm more wondering what it will be like when I first wake and the following day 1 & 2 after the operation. What's the hardest part? Is it overall dealing with pain? Is it tough to just breathe? It is hard to just get up out of bed? It is hard to even walk? Does it hurt to do these things or is it more a case of it just wears you out quickly?

I know you take it one day at a time and each day gets easier but what's the toughest part to get through initially?

Our messages crossed...

To start with, waking up with a breathing tube is strange. It helped me to know not to fight it, but to try to breathe with it. Once the tube was out, breathing wasn't hard. A lot of things hurt, but not badly... I'm pretty wimpy about pain, but I don't have memories of intense pain. They do a pretty good job of managing it. Getting out of bed, walking, etc., were all hard at first, but not intensely so, and everything got better quickly.

In some ways the recovery period was more bothersome for me than the surgery itself. I found it difficult and scary to go from being someone who was very healthy and energetic to someone who only had the stamina to walk for ten slow minutes and who couldn't even stand up to take a shower for a while. Fortunately this phase doesn't last, and all my energy and strength came back. It was just shocking to me to be so diminished temporarily. If I had to go through it again, my expectations would be set better and I think it would be easier to deal with.

 

[pellicle]

I'm more wondering what it will be like when I first wake and the following day 1 & 2 after the operation. What's the hardest part? Is it overall dealing with pain? Is it tough to just breathe? It is hard to just get up out of bed? It is hard to even walk? Does it hurt to do these things or is it more a case of it just wears you out quickly?

all of the above, but don't worry about this because within a few days you'll not be thinking about the first day as there are lots of small challenges. The amounts and intensity vary from person to person. But soon drift from memory ... I indeed only ever think about them when answering these sorts of questions. I had no memory of intubation but was indeed more worried that I kept knocking things off my table because I was "unco" (uncordinated) ... my phone (out of ICU) got a hammering from multiple drops (but its a Nokia E-72, not one of these fragile big screen things...)

In the end its a non question because
1) you have to do it
2) we all did it (some more than once)
3) we all survived
4) its modern medicine not torture chambers (so they have drugs for pain)

myself I'm stubborn and don't like taking too much pain management.

Focus on stuff that matters and that you can influence, like: sitting up PROPERLY (elbows tucked in tight to the ribs) do not pull up, they should give you guides and assisstance, keep your chest pillow close by (we used a tightly rolled and taped towel in Australia) to assist when you cough.

Focus on eating all your food (yes it will be slow) cos you need it

Keep your eye on the horizon and soon enough you won't be able to see this in the rear view mirror

Do not magnify it in the mind with analysis of "what about the pain" ... because that's just not how it is

you'll be fine