New member from uk!
- Thread starter gail363
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Welcome Gail!
Welcome, Gail! 2014 was also when I had my mechanical aortic valve insertion. Ended up with a pacemaker too, due to surgical complication, and now getting down to last few months before it is due to be replaced as the battery runs out.
Hello Gail..
St Jude recipient here ..March 14, 2013.
(Second OHS. The first was a year prior for an Aortic aneurysm. One year follow up showed another aneurysm close to the valve, so had that replaced) then I retired!!!
St Jude recipient here ..March 14, 2013.
(Second OHS. The first was a year prior for an Aortic aneurysm. One year follow up showed another aneurysm close to the valve, so had that replaced) then I retired!!!
Dodgy Ticker
Well-known member
Hi Gail. Even though British, I live in France (where my life was rescued and revitalised in an emergency Open Heart procedure resulting in TWO mechanical valves). So, Welcome to the home of the almost-dead!! Trainee zombies that we are, a sense of humour is strictly NOT allowed, nor is any constructive comment nor criticism. You HAVE to be 110% earnest, honest and depressed to be welcomed here!! Having said all of that positive crap - welcome, and ALWAYS feel free to ask even the seemingly dumbest of questions. We've all been through this shite before and are here to be both helpful and supportive!!
Dodgy Ticker
Well-known member
I would just like to add one thing to my previous post - in all Johnsonian seriousness. As serious as a cardiac problem is, don't take it too seriously. Don't define yourself by it. Life goes on and you need to be an integral part of it, rather than looking from the sidelines wishing that you didn't have this crap to deal with. Well, sadly, you do - so go forward not backwards, and enjoy what you can out of your life. From my side, despite being 60 this year, I have 3 young kids (the youngest is only 7 years old bless her.....) and these little nippers give me more than enough reason and encouragement to go on and see them grow up and flourish. Thats the best advice i can give - if advice is what you were after. Find something positive to attach to, and don't let go!!
Dodgy Ticker
Well-known member
Oh hell - a VERY final word (sorry). I have to admit that I have other health-related problems that actually cause me more daily headache and strife than the cardiac crap (axialised non-radiographic Ankylosing Spondylitis). So I guess that I need to come clean and admit that I DO in fact spend too much time focusing on the menial tasks in life which are difficult for me, but they also distract from the cardiac crap. Either way, a good distraction is te best solution methinks.
pellicle
Professional Dingbat, Guru and Merkintologist
Dodgy Ticker
Well-known member
A-Ha Prof. Pellicle!! I had a feeling you would magically appear!!!
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Welcome Gail. I had my first OHS (aortic valvuloplasty) in 1978. Last year I had my second (aortic arch aneurysm repair, aortic valve mechanical replacement and repair to my innominate artery).
pellicle
Professional Dingbat, Guru and Merkintologist
man, you got good service outta that valvuloplasty!!
- Joined
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"pellicle, post: 914392, member: 12469"]
man, you got good service outta that valvuloplasty!!
I know!!! My parents NEVER told me it was a temporary fix. At 14 I thought I was cured for life. It wasn't until I was in my 40's when a cardiologist said "you do realize you will need to have that valve replaced at some point." Ummm, no actually I didn't.
man, you got good service outta that valvuloplasty!!
I know!!! My parents NEVER told me it was a temporary fix. At 14 I thought I was cured for life. It wasn't until I was in my 40's when a cardiologist said "you do realize you will need to have that valve replaced at some point." Ummm, no actually I didn't.
pellicle
Professional Dingbat, Guru and Merkintologist
Just seeing this because the opening "[" was missing somehow and there was no closing quote tag
When I got my homograft I asked if this was a "medical cure" but was told "we just don't know, its a matter of watch and wait to see".
So I did ... however at about the 10 year mark I started travelling OS a lot and it was another 10 years before I found an aneurysm (because I went for a test because I suspected valve was starting to fail based on my fitness / technique and ski track times).
Now I've got a mech, which I know is a permanent swap for "prosthetic valve disease" from valvular heart disease. Now I just take drugs.
;-)
its interesting. I had my valvuloplasty done at about 10, but I still continued to go to yearly follow-ups with the surgeon (Queensland has the best of the Australian State health systems). I was always under the impression that it would be only a matter of time."pellicle, post: 914392, member: 12469"]
man, you got good service outta that valvuloplasty!!
I know!!! My parents NEVER told me it was a temporary fix. At 14 I thought I was cured for life. It wasn't until I was in my 40's when a cardiologist said "you do realize you will need to have that valve replaced at some point." Ummm, no actually I didn't.
When I got my homograft I asked if this was a "medical cure" but was told "we just don't know, its a matter of watch and wait to see".
So I did ... however at about the 10 year mark I started travelling OS a lot and it was another 10 years before I found an aneurysm (because I went for a test because I suspected valve was starting to fail based on my fitness / technique and ski track times).
Now I've got a mech, which I know is a permanent swap for "prosthetic valve disease" from valvular heart disease. Now I just take drugs.
;-)
Dodgy Ticker
Well-known member
Good luck with the drugs Prof Pellicle. They're an effing pain in the arse to be sure. Something tells me, however, that they're better than being dead, so drugs win!! A miserable choice 2 B sure.....
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My pediatric cardiologist gave me the boot when I graduated from college. It was nice of him to stick with me that long. In my 20's and 30's I saw a cardiologist every 2-4 years which was when I was thinking I was "cured". It wasn't until 2009 that they said I had mild aortic stenosis and I started being followed every year. Ironically it was around that time that I complained about being short of breath upon going up two or three flights of stairs. I thought the fatigue was just from raising four kids. Avoided surgery for over 10 more years. I'd like to think it was in part to staying active and trying to watch what I ate.
I also have a mechanical valve. Now that I have finally become comfortable with testing at home, taking warfarin isn't as big a deal as I originally thought.
pellicle
Professional Dingbat, Guru and Merkintologist
Morning
this is interesting and in my view shows the benefits of not having such specialisation (Robert Heinlein view on that here) and I was fortunate to have the same surgeon across surgeries from 10 years old through to 28 years old.
interestingly I subscribed to the same view on the duration I got from my valvuloplasty and then my homograft. I wonder if its also an indicator of my Lp(a) (which I've never had tested, but I've come to understand has a significant influence on calcification (thanks to @Chuck C for that knowledge pathway).
did that take long? Were you uncomfortable with it at some stage?
Myself I gave it no thought prior to making the choice to having a mechanical. The concerns of management of that were so far down the list of what was important that I literally gave it zero neuron time. I was at first amused by the reactions of GP's (Doctors) at finding I was on it and eventually frustrated by the Circus Clowns tasked with managing my INR and dose relationship. I lasted a year with them "managing me" but only because I had so much other stuff happening in my life (a string of medical difficulties for my father followed by a few deaths that shook me to my core). When I emerged from that I took control of my own management and began using the coaguchek with earnest.
Having a degree in biochemistry (with some exposure to pharmacology) no doubt helped, as I'm sure my strong familiarity with mixing chemicals for black and white photography and charting those reactions and temperature variants. Actually I was doing that before I did my degree.
Anyway, I hope we get a break in the rains here soon (well I'm sure the people here who are actually flooded are even more emphatic in that hope) and I can get on with some projects (building a shed / workshop which I have decided to make off grid and solar powered).
Best Wishes
this is interesting and in my view shows the benefits of not having such specialisation (Robert Heinlein view on that here) and I was fortunate to have the same surgeon across surgeries from 10 years old through to 28 years old.
interestingly I subscribed to the same view on the duration I got from my valvuloplasty and then my homograft. I wonder if its also an indicator of my Lp(a) (which I've never had tested, but I've come to understand has a significant influence on calcification (thanks to @Chuck C for that knowledge pathway).
did that take long? Were you uncomfortable with it at some stage?
Myself I gave it no thought prior to making the choice to having a mechanical. The concerns of management of that were so far down the list of what was important that I literally gave it zero neuron time. I was at first amused by the reactions of GP's (Doctors) at finding I was on it and eventually frustrated by the Circus Clowns tasked with managing my INR and dose relationship. I lasted a year with them "managing me" but only because I had so much other stuff happening in my life (a string of medical difficulties for my father followed by a few deaths that shook me to my core). When I emerged from that I took control of my own management and began using the coaguchek with earnest.
Having a degree in biochemistry (with some exposure to pharmacology) no doubt helped, as I'm sure my strong familiarity with mixing chemicals for black and white photography and charting those reactions and temperature variants. Actually I was doing that before I did my degree.
Anyway, I hope we get a break in the rains here soon (well I'm sure the people here who are actually flooded are even more emphatic in that hope) and I can get on with some projects (building a shed / workshop which I have decided to make off grid and solar powered).
Best Wishes
- Joined
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- Messages
- 101
Things are definitely different here. I only saw my surgeon once after my surgery in 1978. It was about 9 years later and I was having discomfort from one of the wires. Even so, I was thankful to have him as my surgeon. He was a very prominent cardiac surgeon who operated on many famous people. My claim to fame is that he performed my surgery and then within days performed John Wayne's surgery at the same hospital. I was in heaven as I was a huge John Wayne fan at that time.
I have not seen my new surgeon since I was discharged from the hospital last year. I could have done my two week follow up at his office but it would have been a 5 hour round trip car ride (I could barely stand 30 minutes in the car at two weeks post op) and I would have seen one of his PA's.
I wasn't uncomfortable with taking warfarin, I was having a hard time testing at home. I started self-testing last November and only recently relaxed and had more success in getting a good sample. I also finally got my INR up and in a good range.
I hope the rains stop soon.
carolinemc
Well-known member
That is the way in the USA, checkup with the surgeon and never see him/her again.
