Looking for a community of fellow artificial valve folks

[zoemeigs]

One of the most difficult parts of my post-open heart surgery life is feeling isolated and not knowing other people who deal with my issues daily. There was little attention to mental health and the impact on it of having this major surgery or living with a machine in your heart afterwards.
it feels weird. I feel vulnerable.
I also feel like a sick person because I must take warfarin and have my INR monitored monthly. That means a visit with my primary care doc and then a blood draw at an outside lab.
I feel like a Guinea pig in that the doc adjusts the warfarin dosage each time the blood test results are out of range.

 

[Chuck C]

Welcome to the forum Zoemeigs.

One of the most difficult parts of my post-open heart surgery life is feeling isolated and not knowing other people who deal with my issues daily.

Hopefully, participating on this forum will help you feel less alone.

I feel like a Guinea pig in that the doc adjusts the warfarin dosage each time the blood test results are out of range.

I'd strongly suggest that you consider looking into self testing your INR and self dosing. If you did so, perhaps you would not feel so much like a Guinea pig, as you indicate. I've done it for 11 months and others here have done it for many years. There are threads about it. I don't need to go to the lab for an INR blood draw, unless I want to check my home testing device against the lab for accuracy, which does not need to be done very often.

You can find out more by using the Search feature and entering "Self Testing"

Here is a thread with many comments about the subject.

https://www.valvereplacement.org/threads/home-testing.888247/

 

[dick0236]

Hi Zoemeigs. This forum is perfect for you. Everyone here has been where you are now. It was decades before the Internet was invented when I had my valve was replaced and support or practical valve information was very limited for the patient. This Forum was a Godsend for me even thirty years after my surgery.

 

[pellicle]

Hi Zoe

and welcome.

One of the most difficult parts of my post-open heart surgery life is feeling isolated and not knowing other people who deal with my issues daily.

well you've come to the right place because as Chuck and Dick have suggested here we help with the practical and do our best to care for the psychological side too (neglected as you say).

There was little attention to mental health and the impact on it of having this major surgery or living with a machine in your heart afterwards.
it feels weird. I feel vulnerable.

no doubt it feels weird because you got here with almost no lead in. Can you imagine going from being a well adjusted 10yo to being a 17yo over night (or worse an adult with a mortgage and a car on finance)? (watch "Big" again)

I also feel like a sick person because I must take warfarin and have my INR monitored monthly. That means a visit with my primary care doc and then a blood draw at an outside lab.

well we all have to make adjustments to life, and not everyone gets to be a text book picture of health till they die. Imagine if you had suffered:

• ulcerative colitis and required a permanent colostomy bag
• kidney disease and require dialysis while waiting for a transplant (then the anti rejection drugs and the inevitable next kidney surgery after that...)
• become diabetic and require insulin
• got cancer and go through serial remissions after horrific and soul sucking treatments (chemo, radio ...)

If that sounds like I know people who fit in those categories its because I do. Some are already dead.

So in my view non of taking warfarin is a bad thing, heck its not much harder than if you were chronically over weight and had to take statins.

I feel like a Guinea pig in that the doc adjusts the warfarin dosage each time the blood test results are out of range.

well I propose that you instead take control (gradually) and enter the world of self testing and then shoot for self administration.

You'll feel empowered and actively engaged in it all. Its actually not that hard.

Also, in all reasonable likelihood you now have the best shot at not needing another surgery, so that may make the change more palatable.

It is after all just a matter of adjustment and adjustment always takes time.

So fish through past posts and then shoot some questions across the bows here.

Best Wishes

 

[Dana]

I feel like a Guinea pig in that the doc adjusts the warfarin dosage each time the blood test results are out of range.

Welcome Zoe, you've come to the right place. You can influence and stabilize your INR with consistent vitamin K intake, but not perfectly of course because there are other things that affect your INR like exercise, alcohol, medicine (antibiotics, acetaminophen, others) and non-vitamin K foods that can impede the clearance of warfarin or bind to warfarin (only unbound free warfarin has effectivity). The out-of-range variation occurs when one doesn't pay attention to the vitamin K in one's diet and being unaware of these other influencers. You are mostly in control of that. The anti-coagulation clinic or doctor will tell you to maintain constant vitamin K intake. By eliminating that one variable, it allows them some control your INR by adjusting your dose. I prefer to maintain constant warfarin intake and control INR with what I take in, putting me in the driver's seat. But it ends up that we both (I still use the clinic but report my home-test results) are trying to drive the same car so if both you and your doctor make adjustments, it's easy to overcompensate resulting in INR swings. Just need to keep that in mind.

 

[KLS39]

Welcome Zoemeigs. I was so happy to find this forum. I wish I had found it before surgery. I had a friend who had a TAVR for her BAV months before I had OHS for my BAV but before joining this forum there was no one I knew with a mechanical valve. That felt pretty lonely. I also felt that I didn't get a lot of support from my cardiologist in how to try to keep a consistent diet to help keep my INR in range. They also took forever to raise my daily warfarin dose to fit with my diet. Initially I had days where I didn't think I'd ever sleep well again or ever be pain free. I had many pity parties in the beginning. Then one day I'd wake up and one of the areas causing me pain didn't hurt or I slept a few extra hours without getting up. I had a high heart rate so I was told to walk two minutes at a time 6 times a day and then to work up to 15 minutes straight, then 30 minutes. It took some time but I got there and I treasured each "milestone." I am almost one year post op and I feel great. I started testing at home last November. I struggled initially with my technique but I am doing well now and it gives me peace of mind to test weekly and not every 3-4 weeks as I was doing previously.
Hang in there and know that there are a lot of people here to help you.
Take care and be well.

 

[Chuck C]

Everyone here has been where you are now. It was decades before the Internet was invented when I had my valve was replaced and support or practical valve information was very limited for the patient.

This forum is a great example of one of the positive things that the internet enables. I found this forum 4 months before my surgery and being able to communicate with others, who had been down the same road, was incredibly helpful in helping me deal with my situation- the emotional aspect as well as practical advice on dealing with physical realities of recovery and so forth. Having a rare or semi-rare condition can make one feel alone, but we clearly are not alone.

 

[Lynn]

Welcome to the forum. I followed this forum for sometime before joining but it has been a tremendous help. What I really like about it is the great advice and the examples set by members doing their best to lead their best lives. It’s more about celebrating your second chance and living well than it is about living as a sick person.

I agree with others that have suggested home testing. Going to the lab also made me feel like a sick person, where home testing gives me a sense of control. It helps me feel like I feel when I eat right and exercise, that I am doing everything I can to stay healthy. Wishing you the best of luck, and try to remember the way you re feeling now isn’t for ever, things will improve both mentally and physically. Especially if you work at it. Cheers

 

[carolinemc]

One of the most difficult parts of my post-open heart surgery life is feeling isolated and not knowing other people who deal with my issues daily. There was little attention to mental health and the impact on it of having this major surgery or living with a machine in your heart afterwards.
it feels weird. I feel vulnerable.
I also feel like a sick person because I must take warfarin and have my INR monitored monthly. That means a visit with my primary care doc and then a blood draw at an outside lab.
I feel like a Guinea pig in that the doc adjusts the warfarin dosage each time the blood test results are out of range.

You have come to a great forum, for many of us have artificial valves, and some have tissue valves, and some have bovine valves. We all have different experiences to share and help others learn. Just try to keep positive and grow.

 

[carolinemc]

One of the most difficult parts of my post-open heart surgery life is feeling isolated and not knowing other people who deal with my issues daily. There was little attention to mental health and the impact on it of having this major surgery or living with a machine in your heart afterwards.
it feels weird. I feel vulnerable.
I also feel like a sick person because I must take warfarin and have my INR monitored monthly. That means a visit with my primary care doc and then a blood draw at an outside lab.
I feel like a Guinea pig in that the doc adjusts the warfarin dosage each time the blood test results are out of range.

Guinea pig is when you are taking thousands of different meds for many health issues. Dosing is not so bad. Just think of us who have other health issues. I am Type 2 diabetic and have edema and weeping edema in both lower legs, which went undiagnosed for over 30 plus years and just got diagnosed during the first six months of pandemic.
Do not feel like a sick person, get outside, walk in the neighborhood. You are in good company and talk with your General Practitioner about referring you to counseling, it might help the depression.

 

[mecretired]

Welcome to the forum. When I was in your position 13 years ago I felt a lot like you described. But you are not alone. There are so many kind and helpful people on this site. Self testing has helped me immensely. It puts you more in control of what’s happening to you. If that’s the route you choose, many on this site can give you advice on getting started.

 

[Brokenhip]

You have come to a great forum, for many of us have artificial valves, and some have tissue valves, and some have bovine valves. We all have different experiences to share and help others learn. Just try to keep positive and grow.

Interested to know what the difference is between a tissue valve & a bovine valve?

 

[pellicle]

Interested to know what the difference is between a tissue valve & a bovine valve?

don't even mention pericardial ... shhhh

 

[Superman]

Welcome to the forum! Isn’t it nice to know you’re certainly not alone and not alone in your experiences? Your experience with warfarin management post op is also not unusual as you can see from the replies. The quality of care and comfort level of providers is all over the board when it comes to managing INR. Some make it seem like rocket surgery and some make it no different than taking a multi-vitamin. If you have options in your area, don’t be afraid to explore them.


One great option is, of course, home monitoring. That depends on where you are at in your own comfort and, unfortunately, it depends on your provider in some countries. Some providers won’t give up that control over their patients. Some insurance companies have very specific rules for home monitoring (specific companies they work with, lease or own the machine, etc). Regardless, it’s worth exploring.


I’ve been home monitoring for 10 years and work with my insurance, a Coumadin clinic, and another company that provides the machine and supplies (can’t imagine why health care costs are so high). It’s pretty seamless for me though, as my insurance covers the cost. I test weekly or every other week. I email my results. If changes are needed, I have a call with the Coumadin clinic so files can be accurate. Sometimes a doctor will peek at my chart and I’ll get a $10 bill for their efforts. I get a 90 day supply of warfarin (5’s and 1’s for me) via mail order. Pretty painless.

The first twenty years after my valve replacement were a lot more like your situation. I learned about home monitoring here as well and it was a bit of a process to introduce my providers and insurance to it. I also didn’t discover this place until 2009 when I was facing a second surgery due to an aneurysm. It’s now my water cooler talk at work as I’m home based these days.

Welcome again, and ask anything.

 

[Superman]

Interested to know what the difference is between a tissue valve & a bovine valve?

Bovine valves last a lot longer. Once you get Kleenex wet, they’re pretty useless as valves.

 

[carolinemc]

Interested to know what the difference is between a tissue valve & a bovine valve?

Google and going to American Heart Association, they will explain the difference.

 

[MdaPA]

Interested to know what the difference is between a tissue valve & a bovine valve?

"Biological valves (also called tissue or bioprosthetic valves) are made of cow tissue (bovine), pig tissue (porcine) or human tissue (allografts or homografts). Biological valves may have some artificial parts to give the valve support and to make placement easier."

Heart Valve Surgery

 

[Superman]

It’s pretty clear Brokenhip knows the difference. They were pointing out that in the post being replied to it was said, “Some have tissue, some have bovine”. That person likely meant, “Some have tissue, some have mechanical.”, since a bovine valve is obviously a variety of a tissue valve.

Honestly people. RIF. Reading is fundamental.

 

[MdaPA]

It’s pretty clear Brokenhip knows the difference.

It wasn't clear to me that Brokenship knew the difference and apparently not to carolinemc as well. For those that don't know the difference, they can easily refer to the reference/link I posted, others can simply ignore it.

 

[Brokenhip]

Google and going to American Heart Association, they will explain the difference.

I was indeed more interested in your interpretation of the difference as I believe that a bovine valve is in fact a tissue valve & as Pellicle so subtly pointed out the leaflets are made from the pericardial tissue of a cows heart. Although not all tissue valves are bovine.