T
terence
Thanks Leeroy,
That's all good to hear
That's all good to hear
New member valve damaged by reactive arthritis/Ankylosing spondylitis
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T
terence
oh, and I have a date for surgery - 20 August.
Leeroy996
Well-known member
I'll be thinking about you mate -I put your surgery date in my outlook. Keep in contact.
It's nice to have a date, I know I was relieved when i got my surgery date. Just chill out between now and the 20th. Do some walking and appreciate the little things.
It's nice to have a date, I know I was relieved when i got my surgery date. Just chill out between now and the 20th. Do some walking and appreciate the little things.
T
terence
Thanks Leeroy,
Good advice. I'll try and be back on this forum as soon as possible in the wake of surgery to let people know how I got on.
cheers
Terence
Good advice. I'll try and be back on this forum as soon as possible in the wake of surgery to let people know how I got on.
cheers
Terence
Uh-oh! It sounds like you just left for a while! Oh, well -- I'm post anyway.
You know who is a surfer? Extreme amateur, from the sound of it, but one all the same? Adam Pick, who wrote that book you can get on the internet about heart valve replacement surgery from a patient's point of view. Google his name and you'll find him. He had his valve replaced in his thirties. I bought his book as soon as I was diagnosed.
Note: He has some experiences that I now know are atypical, at least in the states. Not bad -- just different from most of us.
It certainly seems like you are unique here, from the comments of everyone else! While I don't have arthritis and it sounds like you're having more of your ascending aorta replaced than I did, I DID have one experience that you will have: planning surgery when a.) the doctor really couldn't be certain about anything until he was in there, and b.) no one could predict at all what would happen to my aorta in the future.
You see, I didn't know until right before surgery if I had Marfan's disease. My cardiologist was 100% certain I did. Turns out he was wrong; the geneticist said that while some people's test results will never be certain, mine say that I don't have it.
But since the test results take forever, and often they are not totally accurate, I had an uncertain waiting period, just like you.
And now, I 'm going to write to an old school friend who was once immobilized by arthritis and ask how his heart is!
You know who is a surfer? Extreme amateur, from the sound of it, but one all the same? Adam Pick, who wrote that book you can get on the internet about heart valve replacement surgery from a patient's point of view. Google his name and you'll find him. He had his valve replaced in his thirties. I bought his book as soon as I was diagnosed.
Note: He has some experiences that I now know are atypical, at least in the states. Not bad -- just different from most of us.
It certainly seems like you are unique here, from the comments of everyone else! While I don't have arthritis and it sounds like you're having more of your ascending aorta replaced than I did, I DID have one experience that you will have: planning surgery when a.) the doctor really couldn't be certain about anything until he was in there, and b.) no one could predict at all what would happen to my aorta in the future.
You see, I didn't know until right before surgery if I had Marfan's disease. My cardiologist was 100% certain I did. Turns out he was wrong; the geneticist said that while some people's test results will never be certain, mine say that I don't have it.
But since the test results take forever, and often they are not totally accurate, I had an uncertain waiting period, just like you.
And now, I 'm going to write to an old school friend who was once immobilized by arthritis and ask how his heart is!
T
terence
Thanks Ponygirlmom,
Sorry to hear that I'm not the only one who had to deal with uncertainty up to the date of surgery. Fortunately, most of that is behind me now.
I've been in touch with Adam Pick and read his book. I bet you can believe how chuffed I was to get to the end of it and find that he was a surfer, and surfing again
cheers
Terence (oh, p.s., with regards to your old school friend, there are over 100 kinds of arthritis and only a few which might damage someone's heart so, hopefully, your friend has nothing to worry about).
Sorry to hear that I'm not the only one who had to deal with uncertainty up to the date of surgery. Fortunately, most of that is behind me now.
I've been in touch with Adam Pick and read his book. I bet you can believe how chuffed I was to get to the end of it and find that he was a surfer, and surfing again
cheers
Terence (oh, p.s., with regards to your old school friend, there are over 100 kinds of arthritis and only a few which might damage someone's heart so, hopefully, your friend has nothing to worry about).
T
terence
Update
Update
Just a quick update:
When I first started this thread prior to surgery I was hoping to find people whose need for valve replacement was caused by damage from Reactive Arthritis (previously called Reiter's Syndrome).
I didn't find anyone but I found something just as good - a warm, empathetic community
Prior to surgery I was worried about potential problems stemming from the relatively unique cause of my valve damage. As it turns out these worries appear to be unfounded. Surgery went fine (although it was major - I had a lot of my aorta replaced too) and I now seem to be mending good.
Anyhow, the main point of this post is an invitation. If at some point in the future you wander on these forums and find this thread. And, if you are looking for information on valve replacement as a result of Reactive Arthritis, please feel free to get in touch with me (probably sending a private message via the forum's messaging system is the most reliable way of doing this).
I'm happy to talk about what happened in my kindof unique case and what my surgeon and I discovered along the way.
cheers
Terence
Update
Just a quick update:
When I first started this thread prior to surgery I was hoping to find people whose need for valve replacement was caused by damage from Reactive Arthritis (previously called Reiter's Syndrome).
I didn't find anyone but I found something just as good - a warm, empathetic community
Prior to surgery I was worried about potential problems stemming from the relatively unique cause of my valve damage. As it turns out these worries appear to be unfounded. Surgery went fine (although it was major - I had a lot of my aorta replaced too) and I now seem to be mending good.
Anyhow, the main point of this post is an invitation. If at some point in the future you wander on these forums and find this thread. And, if you are looking for information on valve replacement as a result of Reactive Arthritis, please feel free to get in touch with me (probably sending a private message via the forum's messaging system is the most reliable way of doing this).
I'm happy to talk about what happened in my kindof unique case and what my surgeon and I discovered along the way.
cheers
Terence
Hi there Terence, great to hear from you and to know that you are on your way to a bump free recovery.
Why don't you start a new thread and tell us about your unique case. I'm sure I'm not the only one who wants to know. Please share.
Why don't you start a new thread and tell us about your unique case. I'm sure I'm not the only one who wants to know. Please share.
P
Phyllis
Great news, Terence. I agree with Freddie. Please start a post surgery thread as there may be many people out there who could benefit from your experience.
T
terence
Hi Freddie and Phyllis,
Thanks for the suggestion. Once I've got a bit more energy I'll start a more detailed thread on my situation.
cheers
Terence
Thanks for the suggestion. Once I've got a bit more energy I'll start a more detailed thread on my situation.
cheers
Terence
