AVR surgery scheduled in 3 days! ANY AND ALL ADVICE WELCOME!!!!

[Juliemoon]

Pellicle,

I can't stand hearing my own heart beat, at least not in the still of the night on my pillow. But I'm trying to figure out some ways to find that more comforting than re-ops. I think I could figure out a way to do that.

As far as anti-depressants, I think they are serious psychotropic drugs, and I've never been able to take a single one of them. Most of them keep me awake all night, and feel like the beginnings of an acid trip that never really takes....(not that I'd know anything about that, of course...)ha. The reactions are so bad that I'd almost rather be depressed. I've suffered from depression and have had a life you wouldn't believe, but I've just dealt with it. So if I can deal with that, it seems I could learn to tune out? the ticking. I do enjoy being alive!

My grandmother had a heart valve, and complained of feeling poorly with the meds. I've read that there is a coumadin sensitivity test one can take, so I'll be asking about that.

You've given me much hope as far as the drug is concerned, where before I had nothing but doubt. Traveling is def something I always want to be able to do.

Is coagucheck the brand the machine?

Congrats on selling your house, and good night, or in Finland hyvaa huomenta!!!

 

[pellicle]

Hi

I can't stand hearing my own heart beat, at least not in the still of the night on my pillow. But I'm trying to figure out some ways to find that more comforting than re-ops. I think I could figure out a way to do that.

well don't try to talk yourself into anything (I'm sure not) ... those things are genuine concern to some and it is not my role to say what is an is not of genuine concern to you.

I only wish to address what are myths and unsubstantiatable issues like warfarin therapy and its "horrors" ... how you feel about X Y or Z is exactly that ... how you feel about it.

No amount of talking me into how good it could be will make me become gay for instance.

I've suffered from depression and have had a life you wouldn't believe, but I've just dealt with it.

I may have a glimpse ... my wife suffered from depression in her earlier years ... we worked together on that for a long time. In her last years I genuinely feel she was over the worst of it and had turned a corner. That sentence implies that I'm no longer working with her on it, and that's true. She is now in a place where I hope she no longer suffers.

So if I can deal with that, it seems I could learn to tune out? the ticking. I do enjoy being alive!

that sounds suspiciously like the fighting spirit right there!

My grandmother had a heart valve, and complained of feeling poorly with the meds. I've read that there is a coumadin sensitivity test one can take, so I'll be asking about that.

you should ... although to the best of my knowledge the only confirmed situations have been found to be the dye that is use to colour the pills.

You've given me much hope as far as the drug is concerned, where before I had nothing but doubt. Traveling is def something I always want to be able to do.

I'm glad ...

Is coagucheck the brand the machine?

yes, it is ... its the Roche. Its rapidly becoming the most widely used on the planet.

Congrats on selling your house, and good night, or in Finland hyvaa huomenta!!!

Kiitos ... puhutko suomea? Nyt asun Joensuusa .. vaimoni oli Suomalainen, mutta nyt Anita on vain sydämessäni.

 

[Paleowoman]

I recently read something about vitamin K2, which helps to deliver calcium to your bones rather than your arteries. Anyone taking this, or familiar with it?

Yes, I take vitamin K2. I've been taking this for several years now. I originally started taking it after reading about it on Dr William Davis's, cardiologist, blog. I then also corresponded with a scientist doing research into it in Holland, Dr Claus Vermeer - they are doing a clinical trial into the effects of K2 on reversing coronary calcification. Then I also read about it with respect to osteoporosis, which I have. In japan vitamin K2 is prescribed in a therpeutic dose as an osteoporosis treatment. If you're interested in it, this book by Kate Rheaume-Bleue is very good: "vitamin K2 and the Calcium Paradox": https://www.amazon.com/Vitamin-K2-C...1&keywords=vitamin+k2+and+the+calcium+paradox The vitamin K2 I take is Life Extension's Super K which contains 200 mcg of K2 as Mk-7 - I take two one day, one anohter, so as to average 300 mcg K2 per day.

I've no idea if you can take K2 if you are on warfarin, but when I had my aortic valve replacement, the hospital carried on giving me my K2 everyday after surgery when I would have been on heparin (an anticoagulant one is put on for a few days after heart surgery, tissue or mechanical).

 

[Agian]

Thanks for the comments and support. He is reputed to be the best heart surgeon in Louisiana

Reputed by who Julie? I bet he's an 'adequate' surgeon who blows his own trumpet. His impulsivity makes me think he's potentially dangerous.
He didn't even have the balls to tell you himself he wouldn't operate. That's no way to treat someone, especially a lady. Despicable.

 

[Agian]

Oh yeah, I'm on Warfarin and I'm taking K2. When I started it, recently, my INR dropped, but after a week it crept up again. No problem.

 

[Superman]

26 years on Warfarin, and I'm only a little bit demented. But I did just turn 44. More dementia to come, I'm sure. I figure the kids will be the cause of that.

Other issues that have developed since starting warfarin:

Weight gain. I'm up over 40 lbs since I first started taking Warfarin.
Hair growth. I barely had to shave when I first started taking Warfarin. Now I grow a full beard and have to shave daily.
Hair color changes. I was blonde when I first started taking Warfarin. First, my hair got a lot darker, but now it's going gray!
Endurance. Initially, I got a lot better with running and such. Even ran a 25k 16 years ago. But over the past few years I've lost a lot of endurance.
Skin issues. My skin is much drier and thinner since I started to take Warfarin. Even have some wrinkles showing up. But it did cure my acne!

It's a pretty rough drug when I look at all the changes that have a occurred in the last quarter century since starting on it.

Just look at dick0236! Over 40 years on Warfarin, and he could pass for a senior citizen! He was just over 30 years old when he started to take it. Prolonged use is dangerous.

 

[dick0236]

49+ years on Coumadin(Warfarin)........only problem happened 40 years ago when I, very stupidly, didn't take my pill for several days. Those where the "dark ages" when ACT info was lacking. At 80 I still have nearly all my brain cells and hair, My endurance is as good as any "old man". I've never broken a bone in my life. I've been lucky in that I've developed few other health issues over the years......maybe being on warfarin has actually made me more resistant to other disease........why not?, it sure as hell wasn't clean living in a glass bubble that got me this far. BTW, I take no supplements, other than a daily vitamin w/o Vit K.

 

[honeybunny]

Julie, just saw the updates about your doctor dropping you. In my first post I wanted to suggest looking for a surgeon who would give you a wider choice of mechanical valves but with your surgery impending I didn't want to throw another variable into an already stressful mix. I've not read all the ensuing posts so someone may have stated this already...can you work with your insurance provider to locate a surgeon who is ammendable to your needs? My provider (UnitedHealthcare) had a "find a provider" link on its website so I can find someone in my network. Shoot, even an out-of-network surgeon should be covered in part.

I think his dropping you is a blessing in disguise and that you will find the surgeon -- and valve -- that is right for you Keep the faith girl!!

 

[Superbob]

I am just catching up, and have not read all the posts. But I have read enough to be appalled by your (ex)surgeon's imperious attitude. I was blessed to have a surgeon who was both highly rated for his skill and totally patient with me as we made the valve decisions. (Dr. Alan Speir, Inova Fairfax, Northern Virginia/DC area). I agree this jerkazoid dropping you may well be a blessing in disguise. I know the valve choice is difficult, with pros and cons to weigh, and folks here are being very helpful. I just want to add that when you make the best choice for you, don't look back -- it will be an excellent choice. Now you and your cardio find a great, caring surgeon for you.

 

[Mellyouttaphase]

Suggestion: flip a coin and if you feel uncomfortable with that outcome it means you preferred the other.

This is how I "cured" my rampant indiciveness in general. When the choice has been taken from you, what you want becomes clear.

 

[Mellyouttaphase]

Just catching up now, too. My thoughts are with you Julie but I agree with the general consensus that he has done you a favour. There needs to be a relationship of mutual trust and respect between the surgeon and patient.

Here's to finding someone great who is willing to listen to your concerns.

 

[Juliemoon]

Wow, y'all are on the ball!

Paleowoman,
Thanks for the info on the K2. Osteoporosis runs in my family, and I will def order the book and check it out! The more you know...

Agian,
Reputed by lots of folks here in the medical community, but YES, I've lost trust in him, and that leaves me wondering what he might do if he's having a bad day on surgery day. I've been upset, but a lot of that is b/c my parents were so stressed out by what happened. They are older, and worried, and my mom is in remission from Stage 4 lymphoma, and while so thankful they are there for me, hate to be burden them and see them so stressed.
Any reason you're on K2?

Superman,
haha
You're sounding super indeed. I could use the weight gain. Been waiting on that for years. (well, i could do 20 lbs at least) It seems most complaints I read about online were from women and included hair loss, depression /anxiety, headaches, itchy skin, stomach pain, insomnia, and being cold. I'm wondering if there is a hormone connection. Yet the women on this blog don't report many at all! 26 years without a hitch is impressive.

Dick0236,
All I can say is that's amazing! Truly!So happy you have been so well.

honeybunny,
I used to have United Healthcare, but now I have Amerihealth which is through Medicaid. Medicaid is sometimes worse than having no insurance at all, b/c so few people accept it. Often times the offices who do are subpar, and then you're on your own to find surgeons b/c they don't even call back.

Superbob,
Thank you. I am hoping to be lucky enough to find such a surgeon, and I appreciate the thoughts.

Mellyouttaphase,
I'm a Libra, and constantly weighing things. Maybe I'll try your cure.

Pellice,
No, I don't speak Finnish. I like language and know a few phrases in a few different ones. I'm glad to hear your wife has conquered that struggle, and from what I get from google translation, what a sweet and wonderful thing to say.

Sorry for the long post, but you've all been so helpful, and I wanted to respond to each of you, since you took the time to be here.

Ending with good news, that I found a surgeon an hour away, in Baton Rouge, and I see him in 2 weeks.I hear he is highly regarded, and offers a choice of valves. So things are lookin up!

Thanks for being such and awesome group!

 

[Juliemoon]

Just to add to that.... I looked up the hospital and they have "average" ratings for AVR surgery, but "worst" survival rates. Don't know how much weight this holds. But kind of scary....

http://health.usnews.com/best-hospi...l-medical-center-6720028/aortic-valve-surgery

 

[pellicle]

Choose a different hospital

It's an omen

 

[AZ Don]

Sorry to hear that your Dr. was such a jerk. Facing heart surgery is difficult enough.

Now that you are looking for another Dr/Hospital, I suggest you make use of US News info on Hospitals, as well as http://www.hospitalsafetygrade.org/. For Dr's (and Hospitals) you can also check https://www.healthgrades.com/ to see how other patients ranked Dr's and for a few dollars, https://www.castleconnolly.com/ to see how other Dr's rank Dr's. They identify Dr's that are within the top 1% and top 10% of their specialty - something I use when I need a good specialist. You can cross reference these with your insurance to find the best Dr/Hospital available to you. It takes a little time but well worth it. If your insurance covers it, crossing into Texas opens up some very high ranked Cardio hospitals. I expect you will find someone better than this last Dr.

Generally when symptoms appear surgery is recommended. As you mentioned having symptoms for some time, your Dr. was probably right that you should have the surgery soon. As daunting as this surgery is, your odds with the surgery are much better than without. For me, open heart surgery was easier than my knee surgery, and much less painful. I think the worst part may be the anxiety of facing the surgery. Regarding valves, either is better than what you have right now, generally mechanical is recommended for those under about 60+ to avoid re-op, but not all Dr's, or patients, agree on this. There is no wrong choice.

 

[Agian]

Agian,
Reputed by lots of folks here in the medical community, but YES, I've lost trust in him, and that leaves me wondering what he might do if he's having a bad day on surgery day. I've been upset, but a lot of that is b/c my parents were so stressed out by what happened. They are older, and worried, and my mom is in remission from Stage 4 lymphoma, and while so thankful they are there for me, hate to be burden them and see them so stressed.
Any reason you're on K2?

You mean other doctors who believe his bullshit. I refuse to believe such a man can be a 'talented' surgeon. Sure, in general they don't have the best bedside manner. But there's a difference between this and being sociopathic. He sounds very defensive and fully aware of his own limitations. Basically, he doesn't want any patients who will not sing his praises. Hence, the reputation of being 'one of the best'.
K2, well why not? It can't hurt.

 

[Juliemoon]

You mean other doctors who believe his bullshit. I refuse to believe such a man can be a 'talented' surgeon. Sure, in general they don't have the best bedside manner. But there's a difference between this and being sociopathic. He sounds very defensive and fully aware of his own limitations. Basically, he doesn't want any patients who will not sing his praises. Hence, the reputation of being 'one of the best'.
K2, well why not? It can't hurt.

Well,perhaps you're right. . I had an appointment out of town today w/ a new surgeon. He ordered a CT scan and discovered that I have an aneurysm in my ascending aorta of about 3.5cm. My former surgeon never checked for this, and when asked he said no CT scan was needed. New surgeon suggested watching it, but also warned against reconstructing my aortic root, which former surgeon wanted to do to fit a bigger valve. New surgeon says that although I am a very small-framed person, a valve size of 19cm should fit fine. I'm not sure how important the ascending aorta issue is now, but I'm glad to at least know about it.

 

[pellicle]

Hi Julie

glad to see you're getting better treatment at the new surgeons. I can't recall which way you were leaning but as you mention:

...former surgeon wanted to do to fit a bigger valve. New surgeon says that although I am a very small-framed person, a valve size of 19cm should fit fine. I'm not sure how important the ascending aorta issue is now, but I'm glad to at least know about it.

with such a diameter I feel its a significant point to raise that valve sizes below 23 (and I don't believe its cm it must be mm because 19cm would be about 8 inches) correlates to higher risk of pannus in a mechanical valve (I can dig up studies, but raise this with your surgeon). So this point may incline me more towards a tissue prosthetic but I just don't know if the smaller diameter is an increased risk of calcification (again, raise this with your surgeon).

Best Wishes

 

[cldlhd]

while digging out some of my old PDF's for Agian I found this little gem...


its repugnant to me that so many clinics want you to be under their care, submit to their management and get vein draws when evidence is piling up that:

1. usual care is responsible for the bad rap that warfarin gets
2. weekly testing (even if you don't do anything because its in range) has significant long term health benefits for valvers
3. self testing costs about $6 a test and you can do it when it suits you (no more waiting in labs)
4. finger stick samples by Point of Care machines (like the coagucheck) are as accurate as labs
5. finger stick samples don't damage your veins like regular blood samples do

to me the lab model is built around a premise that the patients are elderly (time on their hands) and mentally unable to manage themselves.

I raise the bird to that lot!!

Is it also possible that one of the reasons self testing shows better long term results is because people who self test are the kinds of people who take a more active role in their health overall?

 

[pellicle]

Is it also possible that one of the reasons self testing shows better long term results is because people who self test are the kinds of people who take a more active role in their health overall?

It could be, or it could be that self testing makes you more aware, or it could be as per the study findings that simply being in range more is what does it.

Dunno