Wow dick, that's crazy...is your issue pretty similar to mine? They have said the chamber is already enlarged a bit, so I guess it's been leaky leaky for a while. Thank baby Jesus for modern science eh? And thank Sir John A McDonald for Canada...no bills coming to this guy right here!
Yes, I am the new guy
- Thread starter EasterRat
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Warrick
Well-known member
EasterRat;n871156 said:
Hi, my chamber was enlarging also from the leakage but luckily for me it has returned to it's original size which I'm told is uncommon, I think just by what I've read by the time many surprise BAV are picked up the heart has been compensating for a while and stretching has occured, there is a small but significant risk with the extra strain on the heart it will simply just stop.
it's a roller coaster but I'm sure you will be fine
Dylan, During my time waiting for my second surgery I read a book on meditation and used it some after surgery. Meditation and visualization are both good. Now I will tell you what I did when I had my first AVR....cried. I just could not believe it and did not know how to deal with it. Then a kind nurse sat me down and told me that this was all bigger than me. She said I could not handle it all alone and just had to hand it over to a higher power. I am not overly religious but I am spiritual. That day I prayed and handed it to my higher power, God. I prayed for strength to make it through the surgery and then I told Him to please guide the surgeon and nurse's hands as they cared for me. I just had to let it go somehow and then I was much better. My valve had closed to a pin hole size and I ended up on life support and I came through the surgery great!
I may have read one of your posts wrong but I do hope you don't put anything off when it comes to your heart and treatment. Things are much better when you fix what needs to be done and listen to what the Cardios say,
Oh and my angiogram went ok. They give you some pretty good stuff that you can relax and just be there(me) or they will share it all with you if you are interested. (not me,lol)
I may have read one of your posts wrong but I do hope you don't put anything off when it comes to your heart and treatment. Things are much better when you fix what needs to be done and listen to what the Cardios say,
Oh and my angiogram went ok. They give you some pretty good stuff that you can relax and just be there(me) or they will share it all with you if you are interested. (not me,lol)
Yeah, not looking to put it off at all, turning myself over the the white coats for sure...just get to wondering sometimes how lucky I am to have found this hidden issue...thanks for the kind thoughts
Welcome, Dylan. Glad the site's been so useful already, and happy birthday to your little guy. Indeed, many of us younger folk are lucky to have found the issues when we did, and we'll all keep the good thoughts going as you learn more in January and successfully move through next steps.
Superman
Well-known member
When I was in my teens, my cardiologist explained that my heart had to work extra hard, and when muscles work extra hard, they grow. While this may be great for an athlete building strong arms, you don't want your heart bulking up. I was told (and this is from memory from a long long time ago) that my cardiac wall had enlarged significantly. Can't remember if it was 50% or double, but I could be way off if those numbers sound crazy.
I know my parents were into waiting as long as they possibly could to try to limit re-ops. Haven't decided yet if I resent that decision. Some times I definitely resent it. Might have had a more normal childhood if they opted for an early repair or replace and an update later as an adult. I don't know if more permanent damage was done by waiting so long. I know they had good intentions, but the road to hell is paved with good intentions.
I know my parents were into waiting as long as they possibly could to try to limit re-ops. Haven't decided yet if I resent that decision. Some times I definitely resent it. Might have had a more normal childhood if they opted for an early repair or replace and an update later as an adult. I don't know if more permanent damage was done by waiting so long. I know they had good intentions, but the road to hell is paved with good intentions.
Pretty rough day today...woke up at about 4 with a "bubbling" and coughing feeling with every breath. Not sure what that is but it keeps me up and freaks me out a bit. It started around the pneumonia and I always associated it together, now not so sure. It went away for a few days once I got on the ACE inhibitor but now seems to be back. Some Neocitran knocked me out...going in tomorrow to get a check...oh, the joys of health concerns! Here's to hoping tonight is better...
pellicle
Professional Dingbat, Guru and Merkintologist
Has someone done an xray to check for a pleural effusion?
I've had 3 chest X-rays over the course of the last 2 months or so, one confirming pneumonia, one confirming its successful treatment and one today. I didn't ask specifically about that but I'm going back on the 28th so I'll ask. Thanks. They just gave me lasik (sp?) to fill today so we will see how that goes. Zero meds to 2 prescriptions in 2 months. Le sigh
I'm late to the game. That's what I get for going on holiday. I'm glad you're here, but less glad of the reason. That angiogram you have planned should really be a non-issue. I've had a couple, and if you share your fears with the docs prior to the procedure, they can make sure it all goes the way you want.
At your age, the common wisdom is to recommend a mechanical valve. This would give you the greatest chance of avoiding a re-operation. You have quite a few members here with mech valves, so any questions can probably be answered easily. As for the possible repair, I can't comment from any experience, but I'll agree that these are not commonly done in the States. Not many docs have the experience, and many shy away from repair because of the higher operating pressures of the aortic valve compared to the mitral (which are often repaired).
If you do prefer a repair, I'd be sure to have the conversation with your surgeon about not being a hero, e.g. not to try to repair a valve that shouldn't really be repaired. If you have to have a second surgery, you don't want it the same week as the first.
At your age, the common wisdom is to recommend a mechanical valve. This would give you the greatest chance of avoiding a re-operation. You have quite a few members here with mech valves, so any questions can probably be answered easily. As for the possible repair, I can't comment from any experience, but I'll agree that these are not commonly done in the States. Not many docs have the experience, and many shy away from repair because of the higher operating pressures of the aortic valve compared to the mitral (which are often repaired).
If you do prefer a repair, I'd be sure to have the conversation with your surgeon about not being a hero, e.g. not to try to repair a valve that shouldn't really be repaired. If you have to have a second surgery, you don't want it the same week as the first.
Nocturne
Well-known member
Welcome.
The CT scan is a walk in the park. Seriously, you just lay there for like ten minutes, if that.
Hope your CAC score is zero! I had mine done at 42, and... hah... it was NOT zero.
But yours should be!
The CT scan is a walk in the park. Seriously, you just lay there for like ten minutes, if that.
Hope your CAC score is zero! I had mine done at 42, and... hah... it was NOT zero.
But yours should be!
What's a CAC score?
Nevermind, I looked it up on the Google...I think this internet thing might catch on, you know?
Been to the hospital a few times and it has occurred to me that this diagnosis and the related 'issues' can provide some great learnings. I can't help but be amazed by the staff that dedicate their working life to helping sick people - man o man, what a pursuit! Also, how can I feel sorry for myself in light of all the ill people, at various stages of everything, that I see walking, wheeling and being wheeled around? What a fortuitous circumstance that my BAV was diagnosed and how awesome is it that there are options for repair, replacement etc. Also, Oh CANADA! I know there are weird ideas about our medical system (mostly our cousins to the south) about wait times and lack of resources, but let me tell you, my experience is totally 180 from that. I get the tests I need, with no waiting, and surgery is going to be pronto...and I pay about as much tax as you do...what a great Country! Hey Cousins, smarten up, universal health care is great, start taking care of each other down there!
Anyways, just some minor ramblings! Had my CT yesterday, next up a lil followup with Nursing (28th) then pre-angio on the 6th and Surgeon meeting on the 10th. Angio on the 23rd or sooner and then go time I suppose. Been looking around for tattoo ideas to adorn my new body art (zipper)...
Been to the hospital a few times and it has occurred to me that this diagnosis and the related 'issues' can provide some great learnings. I can't help but be amazed by the staff that dedicate their working life to helping sick people - man o man, what a pursuit! Also, how can I feel sorry for myself in light of all the ill people, at various stages of everything, that I see walking, wheeling and being wheeled around? What a fortuitous circumstance that my BAV was diagnosed and how awesome is it that there are options for repair, replacement etc. Also, Oh CANADA! I know there are weird ideas about our medical system (mostly our cousins to the south) about wait times and lack of resources, but let me tell you, my experience is totally 180 from that. I get the tests I need, with no waiting, and surgery is going to be pronto...and I pay about as much tax as you do...what a great Country! Hey Cousins, smarten up, universal health care is great, start taking care of each other down there!
Anyways, just some minor ramblings! Had my CT yesterday, next up a lil followup with Nursing (28th) then pre-angio on the 6th and Surgeon meeting on the 10th. Angio on the 23rd or sooner and then go time I suppose. Been looking around for tattoo ideas to adorn my new body art (zipper)...
pellicle
Professional Dingbat, Guru and Merkintologist
EasterRat;n871304 said:
I like your style
Well another week down and closer to the operating theatre! Tomorrow I do the pre-angio teaching appointment whatever that is and then in 5 days the big pre surgery meeting with the whole team. Angio on the 23rd at this point. When I asked the nurse how soon after the angio it would be she said it could be the next day. I thought she was joking but apparently there are no wait times for OHS due to the number of folks getting resolved through angioplasty...gotta love tech I suppose. My doc says he does not expect to see anything with the angio, but I guess they wanna make sure they change the oil while they are under the hood already if necessary. I take some comfort in the fact that heart issues will not be sneaking up on this fella...test and followup and test should see to that...
I was also told my angio could be quicker, so who knows...I thought, "It could be next week" which freaked me out some yesterday...and then even if nothing changes it'll be 3 weeks - yikes...I guess I am at the top of the coaster track and getting pretty close to the drop off...so here we goooooooooo
I was also told my angio could be quicker, so who knows...I thought, "It could be next week" which freaked me out some yesterday...and then even if nothing changes it'll be 3 weeks - yikes...I guess I am at the top of the coaster track and getting pretty close to the drop off...so here we goooooooooo
user 16505
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Hello from Toronto, Easter Rat (Go Jays!) - may I ask how come you have to have surgery so quickly, maybe I misread your earlier posts? Interesting, I had pneumonia almost 2 years ago and nothing showed up on my x-ray although I do not have BAV and my aortic enlargement isn't very large so perhaps it didn't show up. Good luck with everything, I am a nervous wreck anticipating my next ECHO in Feb but as you reminded me I am lucky to have discovered this problem and it can be fixed. I just happen to have an ECHO last year as part as an annual physical and a slightly dilated aorta was discovered. Please keep us posted on your surgery, will be thinking of you!
Hey Nelson,
Go Jays indeed, we ain't gonna miss EE too much, right? Damn agents getting in the way! My issue seems a bit different than yours, I have a BAV with 'severe' regurgitation, which to my understanding puts me into the 'surgery now' basket. I understand there are other with less severe regurgitation and/or with stenosis that are monitored and when the math essentially pans out, they have surgery. Short answer would be that when discovered, my math indicates surgery...at least that's my understanding.
I certainly feel for all the folks with anxiety and I'm sure my own will come and go...my brain has always enjoyed something over nothing, so I am able to cope for now with thoughts of moving forward. We are truly fortunate to exist in a time and place where OHS is possible and medical intervention will help us live longer...think of all the folks who never get diagnosed and just Jam out one day in the driveway...
I met with the Pre-Angio today and I have one question for folks who have had one. They say it can be done in the arm or femoral artery...in the arm prevents things like typing for 5-7 days...I was hoping to bang off a bunch of work before OHS so was wondering if I should ask for the femoral entry...anyone with experience with either, please let me know what your recovery/limitations were...thanks in advance!
Go Jays indeed, we ain't gonna miss EE too much, right? Damn agents getting in the way! My issue seems a bit different than yours, I have a BAV with 'severe' regurgitation, which to my understanding puts me into the 'surgery now' basket. I understand there are other with less severe regurgitation and/or with stenosis that are monitored and when the math essentially pans out, they have surgery. Short answer would be that when discovered, my math indicates surgery...at least that's my understanding.
I certainly feel for all the folks with anxiety and I'm sure my own will come and go...my brain has always enjoyed something over nothing, so I am able to cope for now with thoughts of moving forward. We are truly fortunate to exist in a time and place where OHS is possible and medical intervention will help us live longer...think of all the folks who never get diagnosed and just Jam out one day in the driveway...
I met with the Pre-Angio today and I have one question for folks who have had one. They say it can be done in the arm or femoral artery...in the arm prevents things like typing for 5-7 days...I was hoping to bang off a bunch of work before OHS so was wondering if I should ask for the femoral entry...anyone with experience with either, please let me know what your recovery/limitations were...thanks in advance!
EasterRat;n871816 said:
I had mine in the arm (radial artery) and was not given any such restrictions. I had my surgery the very next day, though, so I wasn't typing much for a while anyway.
Mine was femoral artery - and similar to Zoltania I stayed in hospital between the Angiogram and surgery as my stenosis meant it was too risky for me to be allowed out. I could feel the area where they had gone in bulge if I tried to strain that leg too much, as if it could burst open , but no pain and nothing happened.
I had mine done through the arm and was 3 months before surgery. Agree with Zoltania about the no restrictions given. My arm did get bruised and black and blue but was not painful during procedure(that I recall) I had mine in right arm and am right handed and no problem (after a good nap when I got back to my room)
