I will have my aortic valve replaced with a mechanical valve next week

[GreenGiant91]

Hi Gail,

Anyway, you might have needed your surgery no matter how soon you were diagnosed.

This is what I try to tell myself, no point thinking what if it was caught sooner as it may have had no impact on the damage to the valve. It was actually the dead vegetation that broke off the valve that caused the hole, so it really did feel like a matter of time before it was going to happen. Just hard to wrap my head around being 32 and needing a new heart valve when I felt my most healthiest but that's life I guess.

7 weeks was a long time in hospital, due to me needing the antibiotic every 4 hours day and night they couldn't do it at home. The first 2 weeks in hospital I had ALOT of scans done. This year I've had 5 CT scans of my head, 1 CT-PET scan (I was radioactive for 6 hours after that), colonoscopy (they wanted to make sure I didn't have any bleeding internally too) 3 TOE's and 5 TEE's. I'm trying not to think about how that much radiation might affect me down the long, I probably glow in the dark now .

 

[pellicle]

I probably glow in the dark now .

nah, nothing like it ... but if you ever have a PET scan you will get a LOT more radiation
https://cjeastwd.blogspot.com/2017/10/radio-labelled.html
I've had plenty of X-Rays, starting back in the 1970's when the dose per X-Ray was way more than 10 times what it is now.

 

[Protimenow]

I've posted this before (and many others have similar posts):

The Coaguchek machines are not always particularly expensive. They use the same strips worldwide (and may actually be manufactured in one location and shipped out globally).

I've bought Coaguchek meters on eBay for as little as $30 U.S. dollars. The least expensive were missing a battery cover and strip guide -but Roche may be able to send one or both at no charge. There's a simple workaround for the strip guide issue.

I don't know if the vendors will ship to the U.K.

I've seen 'unimpaired' XS meters for not much more than these 'discontinued' $30 marvels, for not much more. In my experience, all meters work - Roche makes them so they last a long time (I can't say forever -- we're nowhere near forever yet) and for a lot of tests, so if you manage to get one from an eBay seller with good feedback -- one who WILL ship to you -- you'll probably be fine with it.

I don't know about what your National Health covers. LondonAndy and others will have better information, but I strongly recommend (as others have) getting a meter and self management.

 

[LondonAndy]

I've posted this before (and many others have similar posts):

The Coaguchek machines are not always particularly expensive. They use the same strips worldwide (and may actually be manufactured in one location and shipped out globally).

I've bought Coaguchek meters on eBay for as little as $30 U.S. dollars. The least expensive were missing a battery cover and strip guide -but Roche may be able to send one or both at no charge. There's a simple workaround for the strip guide issue.

I don't know if the vendors will ship to the U.K.

I've seen 'unimpaired' XS meters for not much more than these 'discontinued' $30 marvels, for not much more. In my experience, all meters work - Roche makes them so they last a long time (I can't say forever -- we're nowhere near forever yet) and for a lot of tests, so if you manage to get one from an eBay seller with good feedback -- one who WILL ship to you -- you'll probably be fine with it.

I don't know about what your National Health covers. LondonAndy and others will have better information, but I strongly recommend (as others have) getting a meter and self management.

I agree with this. However, in the UK we can buy a new meter from Roche's retailer for £300 (About US$363) and I posted a link for this in an earlier comment.

Looking on the UK ebay site today, second hand machines start at US$586, so whilst I agree there is nothing wrong with second hand machines, there is no need to look at them here.

 

[Protimenow]

I agree with this. However, in the UK we can buy a new meter from Roche's retailer for £300 (About US$363) and I posted a link for this in an earlier comment.

Looking on the UK ebay site today, second hand machines start at US$586, so whilst I agree there is nothing wrong with second hand machines, there is no need to look at them here.

This sounds like a very fair deal for a meter - the ones on eBay rarely come with any kind of warranty, and it may be more comfortable to know that your meter is new and guaranteed. (I wonder if this price also applies to the newest meter).

 

[pellicle]

Looking on the UK ebay site today, second hand machines start at US$586

 

[Chuck C]

I've bought Coaguchek meters on eBay for as little as $30 U.S. dollars.

I bought my first Coaguchek xs for $220 on eBay. It was used, apparently only about 5 times. It still had the storage pouch, and the instruction manual.
Compared against the lab, it has always checked out exellent.

When a seller started unloaded several meters at $30 to $50, I decided to get 2 more at such a value. I tested them against my other one and they all seem to work great. These 2 had no strip guide cover or battery cover, but as they were intended as back up devices in case my original one konks out, I planned to just transfer the covers, if and when that time comes. I did contact Roche and was able to get both the battery cover and the strip guide covers (my dog ate them, lol) They only asked for the serial numbers and were happy to replace them.

so if you manage to get one from an eBay seller with good feedback -- one who WILL ship to you -- you'll probably be fine with it.

eBay also has an excellent return policy. If they don't check out against the lab, just return them within the time limit.

 

[Protimenow]

I bought my first Coaguchek xs for $220 on eBay. It was used, apparently only about 5 times. It still had the storage pouch, and the instruction manual.
Compared against the lab, it has always checked out exellent.

When a seller started unloaded several meters at $30 to $50, I decided to get 2 more at such a value. I tested them against my other one and they all seem to work great. These 2 had no strip guide cover or battery cover, but as they were intended as back up devices in case my original one konks out, I planned to just transfer the covers, if and when that time comes. I did contact Roche and was able to get both the battery cover and the strip guide covers (my dog ate them, lol) They only asked for the serial numbers and were happy to replace them.


eBay also has an excellent return policy. If they don't check out against the lab, just return them within the time limit.

Actually, checking them out against the lab isn't always the best choice, either, because lab results aren't always good. Also - measurement of INR isn't an exact science - results within 20% of exact INR (whatever THAT is) are accepted as accurate.

A value within 20% of lab should be considered accurate.

(A patient of my PCP left his probably new Coaguchek meter with the tech at his lab because it was 'inaccurate.' I doubt that he or the lab tech were aware what 'accurate' for INR testing really meant. I'm tempted to ask for this 'inaccurate' meter, add it to my small group of meters, and see how the results compare to my present meters).

 

[GreenGiant91]

Just another thought that has been on my mind. I have been reading online around life expectancy with heart valve replacement and I keep seeing 12-15 years post surgery. This doesn't seem to make much sense to me as there are people who have had a mechanical valve for 20/30 years (even longer for Dick). Is the whole life expectancy average being completely thrown out of whack with older patients getting new valves who may also have other medical issues? I watched some videos on youtube from heartvalvesurgery.com channel even on some of his videos doctors have repeated that number.

 

[LondonAndy]

Just another thought that has been on my mind. I have been reading online around life expectancy with heart valve replacement and I keep seeing 12-15 years post surgery. This doesn't seem to make much sense to me as there are people who have had a mechanical valve for 20/30 years (even longer for Dick). Is the whole life expectancy average being completely thrown out of whack with older patients getting new valves who may also have other medical issues? I watched some videos on youtube from heartvalvesurgery.com channel even on some of his videos doctors have repeated that number.

I'm sure that will come as quite a shock to a number of people on here. Did you read that NICE report I linked to? Improved management of INR through self-testing is one reason I think those stats will soon look very wrong.

But more important than that: what is your life expectancy without going through with it?

 

[pellicle]

But more important than that: what is your life expectancy without going through with it?

agreed, but then what is the life expectancy of other diseases? I've lost good friends from Cancer who were younger than me. Then there's car accidents, work place accidents ... I sometimes think that in the shock of the discovery people forget to check their entitlement to a long and healthy life is valid and universal. I've pondered if perhaps its the illusion of us being in control.
https://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html
I literally don't ever remember even thinking about "what is my life expectancy" until I came here and saw people getting frantic about it. Of course we're all different.

 

[pellicle]

Hi

Just another thought that has been on my mind. I have been reading online around life expectancy with heart valve replacement and I keep seeing 12-15 years post surgery. This doesn't seem to make much sense to me as there are people who have had a mechanical valve for 20/30 years (even longer for Dick).

the secret is answered by this meme I made up years back

If you just transfer the summary of the study (without reading much) you'll get the wrong idea. For example:
https://pubmed.ncbi.nlm.nih.gov/34823657/
from which this may pop out at you:

Median survival time was 10.9 years ​

But that key word is median. Now lets look at a little bit more

Methods: Patients ≥60 years with aortic stenosis who underwent isolated SAVR with a bioprosthesis (n = 8,353) were risk-stratified before surgery into low, intermediate, or high surgical risk using the logistic EuroSCORE (2001-2011) or EuroSCORE II (2012-2017) and divided into age groups.​

how far above 60 are you?

Digging a bit more we see this:

Results: There were 7,123 (85.1%) low-risk patients, 942 (11.3%) intermediate-risk patients, and 288 (3.5%) high-risk patients. ... In low-risk patients, median survival time ranged from 16.2 years in patients aged 60 to 64 years to 6.1 years in patients aged ≥85 years. Age was associated with 5-year mortality only in low-risk patients (interaction P < 0.001).​

note the text I've underlined ... how long would you reasonably expect an ordinary older than 85 year person to live?

Suddenly 12 ~ 15 years seems normal doesn't it?

Again, look at my meme and reflect on what is the age distribution of OHS.

https://pubmed.ncbi.nlm.nih.gov/29746650/

Results: A total of 351 patients underwent surgical aortic valve replacement. ... patients aged <70 years, 70-79 years and ≥80 years, respectively. Patients aged 70-79 years and ≥80 years had a hazard ratio of 1.88 [95% confidence interval (95% CI) 0.92-3.83, P = 0.08] and 2.90 [95% CI 1.42-5.92, P = 0.003] for mortality, respectively, when compared with patients aged <70 years.​

and
https://openheart.bmj.com/content/3/1/e000338

Results The mean age of the cohort was 75 (±5.6) years. Patients in the AVR alone group had a slightly higher median survival of 10.9 (95% CI 10.5 to 11.8) years​

Starting to see that the vast majority of data in studies isn't on those of us who are in their 40's when having OHS?

I was 10, then 28 then 48


PS, grab a cup of tea/coffee and go through this without distractions


HTH

 

[carolinemc]

I've posted this before (and many others have similar posts):

The Coaguchek machines are not always particularly expensive. They use the same strips worldwide (and may actually be manufactured in one location and shipped out globally).

I've bought Coaguchek meters on eBay for as little as $30 U.S. dollars. The least expensive were missing a battery cover and strip guide -but Roche may be able to send one or both at no charge. There's a simple workaround for the strip guide issue.

I don't know if the vendors will ship to the U.K.

I've seen 'unimpaired' XS meters for not much more than these 'discontinued' $30 marvels, for not much more. In my experience, all meters work - Roche makes them so they last a long time (I can't say forever -- we're nowhere near forever yet) and for a lot of tests, so if you manage to get one from an eBay seller with good feedback -- one who WILL ship to you -- you'll probably be fine with it.

I don't know about what your National Health covers. LondonAndy and others will have better information, but I strongly recommend (as others have) getting a meter and self management.

And does Medicare cover the strips used, or the Medicare Advantage medicine coverage?

 

[MIB]

In the US it depends on your insurance. Standard Medicare does cover meters. How much advantage plans or medigap plans pay depends on your insurance. My medigap plan covers my machine and supplies 100%.
In my case, I have a plan F. I pay a monthly premium.

 

[Art O Ceitinn]

Hi all,

S

Hi all,

So my background is congenital heart disease I was born with a Bicuspid aortic heart valve, VSD and needed a Coarctation of the aorta repair to save my life at 11 days old. I'm 32 years old now. Living in the UK.

I became unwell this year around May time before finally being diagnosed with endocarditis in August, I spent 7 weeks in hospital getting IV antibiotics for this. The final scans of the heart at the end of September seemed okay allowing me to be discharged with close follow up appointments with my doctor. However at the end of October part of the dead vegetation came off the heart valve causing a small hole in the Aortic valve this caused me to have a TIA (lost sight in left eye for a few minutes) I went straight to hospital. After a few days of tests it was decided the best treatment for me would be a mechanical heart valve and they will close the VSD while they're at it.

I found out today the surgery will be next Thursday so it's starting to feel very real now and scary. I will be honest and say this is the most scared I have ever been in my life and still can't believe this is happening. I'm trying to be positive but I'm struggling with it all.
I have extreme anxiety about the surgery itself, as if it won't successful, dying and other complications that may disable me. I know these fears all come from the unknown and overthinking but its hard to relax. I also fear my life with the valve will be one that will hold me back from traveling, being active, enjoy food and having a long happy life. I start to worry about needing a new valve down the line too.

I have been reading this forum for the past few days and its been very helpful in easing some of my fears but now it's getting real with the date my anxiety has gone up. My hands started to shake uncontrollably when my doctor told me today.



I just hope I can have a normal healthy life after this. I guess I hope to hear everyone's experiences and maybe it can help me relax more and embrace this next chapter in life.

hi

GreenGiant91​

my background in like yours but 40 years ahead. I had my first OHS ( coartation ) in Dublin, when I was a 15 years old in 1966. I had my aortic valve replaced with a St .Jude in Paris November 2007 I remember on the first day I was so week I could not lift my hand off the bed. On the third day I managed to have a shower, Sixth day I left the hospital to spend 2 weeks in a rehab clinic. I was home for Christmas, and even managed to do some Christmas shopping and cooked the Christmas dinner for my wife and 5 year old daughter. During the Christmas holidays I went to Disneyland with my daughter and even managed to do some of the rides with her. The following June we were walking in the mountains of Crete. So you have your whole life to enjoy in front of you. Its a major operation but you should make a quick recovery. The only downside is the tic tic tic tic at night time while lying in bed before sleep. (this is for Pellicle) my solution is a ear piece with ted talks. AS for alcohol Cheers enjoy your life. I dare I say it may have had a little bit over my units allowance.

​

 

[GreenGiant91]

Had a chat with my surgeon today. He said he would try to repair the valve first if he thinks it's possible (I don't think it will be and neither did my cardiologist). If he's unsuccessful he will replace it with the on-x valve which again I was surprised about as I was expecting st jude valve with being in the UK and NHS. Part of me kinda hoped it would be st judes but I don't even have a logical reason for that other than its older and we know it last a long time. He went over all the risks and complications for the surgery which are still terrifying even though they're low risk. The risk of needing a pacemaker due to working close to the electrical area of the heart is something I wasn't expecting to hear.

Things feel very real now and its like I'm in a movie watching myself from a far. In 48 hours I will hopefully be lying in ICU with no complications on the road to recovery.

 

[3mm]

Greengiant91 - You will succeed! Please stay in touch; we care about you.

 

[GreenGiant91]

Greengiant91 - You will succeed! Please stay in touch; we care about you.

Thank you Mark!

I'll post an update after surgery!

 

[LondonAndy]

@GreenGiant91 Best wishes for this week! You don't need to think about this until after the op, but in case you do end up buying a CoaguChek meter from the company I provided the link to earlier, to get it without paying VAT you have to phone them on 01685 846666.

 

[GreenGiant91]

From the other side. Still out of it a day later.