New for Alberta Canada

[Oilman]

Well I just wanted to introduce myself as a new member of VR.org, My name is Doug, and I am a 49 yr old male from Alberta, Canada. I am married with 2 sons at home 14 & 18. I was just informed on Sept 21/12 that it is time to replace my bicusp Aorta valve and root. I was born with this condition and it was detected when I was 18 yrs old. I started to have echos done every 2 years from age 30, until signs started to develop a couple years ago, when I suffered a mini stroke, at that point I started on warfirin to control any clotting the valve may or may not have been producing, cause the leak was still mild at that point. Just 4 weeks ago I suffered a case of A Fib and had to be cardioverted to normal heart rate, which led to a angio test 3 days later, then I was told it is was time for surgury. I will be fitted with a mechanical valve, due to age and the fact that I have been on warfarin for 30 months anyways without event, I self test and medicate with the Coaguchek XS. So I waited another 3 weeks to do my CT of the upper chest and now am waiting on the surgeon from Edmonton to call with my date. So life has been at a stand still for 4 weeks as of today. Time waiting is something a person doesnt need with this condition. I have stopped working as my weakness after the A Fib and the shock of the news really took alot out of me. I was told that it should only be a few weeks to surgury, but starting to wonder now. Not much I can do at this point, because of our health system up here, everyone takes a turn unless its an emergency, pretty scary at times. Did start looking at stats and online info, wrong thing to do, glad I found this site now. I have been reading alot of the posts on the site and find it very comforting in the power of the experienced people. I wont try to kid anyone, I also have alot of fear of the unkown, but continue to find ways of dealing with this. I find it not a sign of weakness to reach out to people but as showing of courage and strenght, at a time like this I need all the support I can get. I just hope that I dont receive a call saying it 3 months down the road. Look forward to meeting and communicating with you soon.

Thanks
Doug

 

[Greg a]

Welcome to a great community !!!!!! All your fears and concerns are perfectly normal. I did a quick search and the following is a link for wait times http://waittimes.alberta.ca/WaitTimeTrends.jsp?rcatID=34&rhaID=All_&doSearch=true&urgencyCode=9&facilityID=-9_&checkedRegionNo=0&oldCheckedRegionNo=0&oldCheckedFacilityNo=0&ifDisplayFacility=false&ifDisplayPhysician=false&command=goToAccessGoals&chartType=access_goal&subChartType=90_AVERAGE_&disabledChartType=trend&status=processAjax&ifHavingFPTMeasurement=true#WaitTimeInfo for Alberta. The best way to use this forum is to ASK A LOT OF QUESTIONS :confused2: it is highly unlikely that you will pose a question that someone has not lived already

 

[Freddie]

Welcome fellow Canuck or should I say Hi neighbor as I'm in Saskatchewan.

May I suggest that you phone Edmonton again and see whats going on. Tell them it's been 4 weeks without a word, but most of all tell them how you are feeling.....stay on them, don't get yourself pushed aside. As much as I hate to say it, you have to become a thorn in their side to get answers.

This is exactly what one member did and she was from North Battleford and got results.

On the other hand, you may get a call saying surgery is tomorrow......that's what happened to me. Thought I was on the dreaded Canadian waiting list. Put on the list on a Monday, got called for pre-op tests on Thursday of the same week with surgery the next day. Oooh yea my head my spinning, especially when I didn't know I had a problem.

In any case, welcome to the forum and become a thorn in Edmonton butt.

Take Care

 

[Fundy]

Doug, a mechanical valve is a good choice for someone your age; but then again a tissue valve is a good choice for someone your age as well.
But age itself actually isn't a good reason for choosing one or the other. You might want to form an opinion on which you'd prefer least; anticoagulation therapy or another surgery.

To me it seems that your people at this site in your age zone are about 50/50 in choice. Just thought I'd mention that its not automatic that a 49 year old get a mechanical valve because of age, and that its your choice of which type. A mechanical valve is a good choice for some and not for others.

Its probably worth thinking a bit about.

 

[Oilman]

Thanks for the welcome, and info Greg, I will for sure look into wait times online with your link, but also I agree with you Freddie about not sitting back. I plan to see my family doctor in the next couple of days to see if he can get some emails rolling, and also contact the local cardiologist that took care of me 30 days ago. My condition at present is stable but I now recognize the fact of fatigue and out of breath. It's a very discomforting feeling, always thought it to be old age, but its not, it's my valve leak. Funny you raise a good and valid point, as a tissue valve would keep me off of the warfarin and restore some of the sports I enjoyed for so long. My only concern is that when I suffered the TIA stroke two years ago, and doctors not being positive of the reason, weather it was the valve throwing little clots, they recommended going to the blood thinner for prevention of further strokes. I am totally concerned about the long term effect of the Warfarin as I need 75 to 76 mg per week to run a stable 2.5 INR. I just don't think my cardio will think leaving the blood thinner even if I went with a tissue valve.

 

[Oilman]

One thing I would like to know is it real unusual to need 76mg per weak to run with a INR or 2.5, and could this have some health affects down the road. This seems like a large dose.

 

[Freddie]

We take the dosage that is required for one to stay within range and as one become more active chances are the dosage will increase a little more.

BTW, don't wait a couple of weeks to see your GP, get an appointment for next week. Lets get this ball rolling and get the answers you need.

 

[Oilman]

I agree, we will be seeing him hopefully by Mon or Tues, cause sitting around like this is no way to live. I don't take road trips with my boys hockey team since the last event! In fear I'm too far from a good hospital. With this much time on my hands, the mind wanders to strange places.

 

[nngbwh]

Welcome aboard and enjoy the ride......

 

[Luckyguy17]

Hi Oilman,

Welcome to the VR forum fellow Canuk.

I Had a three month wait to my surgery from when it became urgent to replace Aortic valve and repair Mitral in Feb 2010. Am now 30 months post surgery, drug free, no murmur and all is very well.

Oilman, I was a test case at my hospital, for a Calgary originated procedure of closing the sternum with Kryptonite glue. My recovery from the surgery at 56, was uneventful and very quick, with very little discomfort from the surgery, virtually no pain meds 4 days post op and into a good walking regimen in week 2.

You may want to inquire to your surgeon about this procedure, I for one am very glad that my surgeon agreed to make me a test case for the glue, am convinced it it worked well for me with no side effects.

Good luck with the scheduling of your surgery, in so many ways the wait is actually the most difficult time for many of us.

Regards,

Gil

 

[ElectLive]

Funny you raise a good and valid point, as a tissue valve would keep me off of the warfarin and restore some of the sports I enjoyed for so long. My only concern is that when I suffered the TIA stroke two years ago, and doctors not being positive of the reason, weather it was the valve throwing little clots, they recommended going to the blood thinner for prevention of further strokes. I am totally concerned about the long term effect of the Warfarin as I need 75 to 76 mg per week to run a stable 2.5 INR. I just don't think my cardio will think leaving the blood thinner even if I went with a tissue valve.

Previous stroke is one of the risk factors that could impact the normal recommendation (no warfarin - low dose aspirin only) for those who receive a tissue valve. Particularly if you have, or end up with, any other risk factors, such as A-Fib, staying off Warfarin may not be an option in your case. So, certainly you should discuss this further with cardio and surgeon if any question at this stage. I wonder what impact, if any, there would be on your target INR range with either valve choice.

You know, your history brings up an interesting point to me...when my surgeon was discussing valve choice with me specific to stroke risk, he surprised me by telling me that my native bicuspid valve already had the same stroke risk as a bioprosthetic valve, I was already more at risk than the population at large even before putting in any type of prosthetic valve. I'm not sure I've heard anyone else ever mention this actually happening before, and perhaps it's not definitive in your case either, but just cued a memory for me.

Anyway, despite the circustances, welcome aboard all the same, and best wishes to you moving forward.

 

[Oilman]

Thank you for the welcome. I see nngbwh is a avid rider. Biking is what I'm hoping to use in my recovery and future health advancements. I picked up a road bike for summer and have a spin bike for our heavy winters in the north.

Gil it's sound like your recovery went as most would like including myself. I will discuss the Kryptonite glue for the closure of the sternum. I am hoping that I'm not in for a 3 month wait like you did, but it is what it is, from recognizing my weak symptoms from the past, they used to last 2 weeks like the flu, this event has lasted a month so far. Had to stop working, so I will need some answers real soon.

Electlive, I agree that in my case it's not likely that I will avoid the use of Warfarin. With suffering the TIA 2years ago. That was the prevention and not being sure the cause, it's cheap insurance for not having it re occur. I was told that the native bicuspid valve has a greater risk of clotting from my cardio at time of stroke. One of my greatest fears is another stroke the TIA only resulted in severe vertigo for a couple months, but was very scary. I have recently had abnormal heart beat at times along with the A Fib event that led to the angiogram test. The cardiologist feels this is all relate the the severe valve leak, least I hoping some of this smooths out the valve replacement.

Thanks for the insight, cheers

 

[Mom2izzy]

My "symptoms" increased once I knew I would need surgery. I chose to wait 3 months b/c of a vacation I had scheduled with my 3 year old. It was hard to work or function during that time. My GP prescribed an anti-anxiety medication that helped a bunch. I only took it as needed, and just having it with me was comforting enough to make me need it less. Hopefully your surgery will be scheduled soon, but if not...maybe meds would help.

 

[Jkm7]

Previous stroke is one of the risk factors that could impact the normal recommendation (no warfarin - low dose aspirin only) for those who receive a tissue valve. Particularly if you have, or end up with, any other risk factors, such as A-Fib, staying off Warfarin may not be an option in your case. So, certainly you should discuss this further with cardio and surgeon if any question at this stage. I wonder what impact, if any, there would be on your target INR range with either valve choice.

You know, your history brings up an interesting point to me...when my surgeon was discussing valve choice with me specific to stroke risk, he surprised me by telling me that my native bicuspid valve already had the same stroke risk as a bioprosthetic valve, I was already more at risk than the population at large even before putting in any type of prosthetic valve. I'm not sure I've heard anyone else ever mention this actually happening before, and perhaps it's not definitive in your case either, but just cued a memory for me.

Anyway, despite the circustances, welcome aboard all the same, and best wishes to you moving forward.

When I was choosing which valve, the clicking noise was a factor for me in addition to lifetime coumadin. I did not wish to risk I would be one of those who received a loudly ticking valve. Some brush away that concern but we all know ourselves and I by no means brushed it aside as unimportant.

 

[Oilman]

Mom2izzy, I can surely relate to what your saying its almost like watching the pulse steady. When I suffered the mini stroke my GP and neurologist had prescribed the anti-anxiety meds which I used for 4 months and seem to work, but with time I was able to settle down and carry on, so that is an option for sure.

JKm7, I understand fully the point of receiving a noisy valve would be really tough to deal with, especially when I don't know how noisy it really is. I have trouble just listening to my heart beat while sleeping now, always moving to avoid listening to the thumping. Unfortunately I am a little concerned with the medical findings of my mini stroke, so I'm a little hesitant to discontinue the Warfarin at this point because its part of a stroke prevention. Too many what if's so far my 30 months of the medication has been uneventful. I eat exactly how I did in the past and things have stayed very stable. My choice of recreation has changed a little, as taking a head shot from ice hockey or water skiing is a concern. I don't have any regrets with that tho, I have been enjoying other activity now.

But that noisy valve is a real concern

 

[dick0236]

Welcome Oilman. I have been on warfarin 45+ years and have had dosages as high as 70mg/wk when I was young. There have been no long term effects in using the drug. Sometimes I think the long term use of warfarin has had some beneficial effect....I still look like I am in my early 60s, have a full head of hair w/little gray, keen mind, exercize endurance etc. On the downside, I also suffered a mini-stroke?...TIA?...CVA? a few years after the valve was implanted due to my lack of proper INR management. You sound like you are aware of proper management and seem to be able to monitor/control your INR without difficulty. A mechanical valve probably would eliminate the need for a valve re-op in your 70s....and, to me, that would be a big plus. I can't speak to valve noise except that I have not heard mine in decades....and neither can those standing close to me. I think noise may have a lot to do with body style. I am 5-9 and 166lbs. I believe the majority of patients become very accustomed to the noise, if any, in a relatively short time.

 

[Oilman]

****. thank you for your input. Its nice to hear about the noise thing first hand, so with any luck my 6-2" & 225 lbs frame could muffle some of the noise, fingers crossed. Your experience with warfarin is most valueable to me, I often worry about that leading to more trouble. Hopefully with time, my 76 mg/wk will lower too. This helps me fell good about the choice that has been recomended to me in valve choice. Another strong point for me, is the re-op, if I am blessed as yourself and others, I may not see another and that would be good by me, as I am terrified of the first one coming. Its only makes sense for me to have a mechanical installed as I may never see life without Warfarin because of my past TIA, Im sure my doctor would not recommend leaving the treatment. I have read from others and yourself, that they have not changed hardly any of their lifestyles due to warfarin, I have not either. I find Im a little more involved with my health and lifestyle cause of it, and that cant be a bad thing. I so appreciate all of the input on this site, and find it very comforting that people take the time to share their opinions and experiences with one another, thanks again ****.

 

[Greg~]

Doug,
Welcome to the family. I'm sorry you're having heart problems but I'm glad you found this site. Everyone here is so nice and very supportive. Like you, I was concerned about this, since it was my first surgery - I guess I'm an over achiever
My biggest challenge was dealing with "Theater Of The Mind". For day's all I could think about was the what if's. I'm the kind of person that needs to know exactly how this goes, what are the step-by-step procedures, who's doing it, what are my chances, could something go wrong, and if it does what will happen, blah, blah, blah.
I stopped the head games by realizing:
1. There wasn't anything I could do to change the situation. I'm going to have the surgery and that's that.
2. The surgeons, anesthesiologists, and nurses who performed my surgery (and yours) are all highly trained experts and they alone perform this surgery multiple times per week!
3. OHS and AVR surgery is performed SUCCESSFULLY thousands of times per year.
4. I have a wonderful family and strong faith in God and they'll be right by my side through it all

I know you'll do fine, and once you make it into recovery you'll realize that all of the anxiety was for not. And you're going to feel awesome after the valve has been replaced. You poor heart and body have been compensating for the BAV, and soon they won't have to. Plus, the dividends will be more energy, greater stamina, and ton's less anxiety.

Please keep us posted

 

[Bina]

Hello from Ontario !
Call those docs and become a pain in the butt. In my case I stalled for a long time, then at the 2nd surgeon meeting in Montreal, he
booked me for 2 weeks later. My time had run out and I was in CHF.
You will do fine.

 

[Oilman]

Thanks Greg, It's kind of funny that most people on the site have lived exactly what I am going through here,and it all turns out to be just fine. You are correct with the "Theater Of The Mind" for sure. I am trying to keep myself a little busy not to have so much thinking time on my hands, but easier said than done. Every point you made is true, I seem to handle most all things in life needing to know exactly whats going to happen. I will have to let it go!!

Hello Bina, I do plan on pushing back this week coming for sure, cause I understand that waiting too long could have serious consequences. I need to have this done, there is no changing that for sure. It has been 4 weeks waiting since the news now, I was told two weeks back then, still waiting. The last two days since joining the site have been very helpful with putting me at peace , I thank you.

Doug