Frustrated with Alberta Provincial health care system

[bdryer]

Greg

A "Davey Crockett hat " that is so Klondike days". He-He. How about I show up at the legislature wearing a stetson perched on a thoroughbred horse. Now thats Stampede! Between you and me I'm afraid of riding horses!

I requested the Kryptonite glue when I met with the surgeon. He said every one in cow town requests it, especially as it was on the news for days on end in Canada. Why? Because it is a "clinical study". Hence "no way" was his response.

Still mulling the ombudsman thing.

 

[bdryer]

epstns

Hey this is the first time we have locked horns! Dude from what I have read, your heart condition is older then Moses! Wow!

Very Interesting how much aorta stenoses has degraded and reduced you to a sloth. I as well have been on the down hill slide. Thank God we know about our condition, so we don't decide to cure an undiagnosed AS problem with interval training. That could be lights out for the both of us.

Saw the Cardiologist today to follow up on my angiogram, CT scan and chest x-ray results. He classifies me as an "Emergency case" with my AV limited to .6cm2 since Oct 14. WTF? I don't hear any sirens or see flashing red lights. Welcome to the province of Alberta health care system. Things move faster in Jamaica.

Thank God the aorta showed no crossed plumbing in or out of the heart. The aneurysm of the ascending aorta was 4.2 cms not 4.5 cms. Angiogram was no faults found. Hmmm does the surgeon still do the ascending aorta graft?

As some are aware, I'm pushing for an an On-X AV. To date the facility has not installed one. My surgeon is receptive to installing an On-X. I have been corresponding with the On-X Canadian rep together with the surgeon. Today when I saw the cardiologist I explained that I wanted an On-X and why. He said if you want an On-X then get one! He said wait, "I'm getting you the name of the director of cardiac surgery at your hospital and you tell him "TO MAKE IT HAPPEN". He looks at his file, then at me and says, "don't bother, the director is your surgeon". SCORE!!!!!!!! Well lets see what happens. I'm not holding my breath, [ my crappy AV won't allow me regardless ] but I hope the ridiculas wait time allows my efforts to be implanted with an On-X, not to be in vain. My luck I'll end up with a museum piece ball and cage thingy. No disrespect ****!

 

[ShezaGirlie]

bdryer ~~ I sure hope you get your On-X valve. They're made in Austin, Texas ya know.. And Davy Crockett died at the Alamo in San Antonio, TX. Are you sure you're in Calgary.....! And take another look at those horses at the Calgary Stampede 'cause they're quarter horses, not thoroughbreds..:wink2:

Seriously, all the best to you..!!! Keep that sense of humor going!:thumbup:

 

[bdryer]

Woa ShezaGirlie

I wanted to sit tall in the saddle, hence the Thoroughbred. If I wanted to lasso and drag a Politician I would use a 1/4 horse.

It is cool that On-X is MFG in your home state. Just wait, like all North American MFG, it will eventually end up in China.

Thanks for posting. It's nice that some of the VR veterans are are responding on my threads. Don't feel like a green horn any more.

 

[normofthenorth]

Bdryer, if you're EVER going to read the competitive stuff (including a BUNCH of linked scientific articles) on the ATS web-site arguing that their valve is maybe even BETTER than the On-X in avoiding clots (and quieter), I'd recommend reading it BEFORE your surgery, just in case you find it persuasive!

If nothing else, "Murphy" will arrange that, if you start waffling about your choice of valve, you'll suddenly get that phone call from your surgeon saying that they're ready for the operation!!

 

[bdryer]

Hi normofthenorth

Yup, the ATS is great indeed. Just one little design problem. Their is no pannus protection. Pure Pyrolitic carbon, check. State of the art pivot system, check. Quiet, check. Open pivot system, check. Pannus protection, not engineered into the valve. I'm like, WTF? This valve is to good to be true, so I called their customer service and posed the question about a pannus inhibiting feature. No sir they said. I was told the valve relies on a lower thrombosis to inhibit the pannus.

Other then structural failure of a MHV, generally due to the surgeon making an error sizing the valve on install, or recalls for MFG and engineering errors, the prime reason for replacing an in service MHV is pannus. This is why I'm working very hard for an On-X. This is the only valve which pannus protection is deliberately incorporated into the design. The St. Jude Regent relies on the pivot guards to hold back pannus. Does that mean pannus has already impinged on the internal annulas of the St. Jude? I'm thinking so.

I am to close to my surgery to start throwing alternate valve suggesting at my surgeon. I want him to be clear that On-X is my choice. That bloody "Murphy" dude persists even with the best laid plans. Me waffling on valve choice will just make "Murphy" that much stronger.

normofthenoth I do really appreciate you looking out for me and proposing excellent alternatives. I am glad you brought this valve to the forefront. It gives folks in the waiting room the opportunity to investigate the ATS valve. Who knows, perhaps ATS is on to something when they say lower thrombosis is all that is required for this valve to inhibit the growth of pannus. Lyndsay Hartman from St. Jude told me the prime reason for pannus growth, is due to people not keeping their INR in range and being inactive. As for me, I'll take the added pannus protection of the On-X.

 

[Jeff Edmonton]

Bdryer, off to Edmonton tomorrow for my pre-admission. I was told that I will be scheduled for surgery in the next two weeks. We will see if it is any better in Edmonton or not, might have to try the chest pain theory. This will be my first visit with the surgeon.
I can sure notice a increasing shortness of breath, I do not look forward to this surgery but it needs to happen soon. Maybe if I pledge my allegiance to the queen really load they will put me through faster.

Why do you feel the ON-X valve is the way to go? I see the response above, never mind...

 

[bdryer]

Jeff

Wow it will be interesting to see if you get a surgery date when you meet the surgeon. On Dec 9 when I met the surgeon,all I got was, I've got to get you done befor the end on Jan.

Jeff, Edmonton has been installing the On-X. Demand this valve. Go to the Ox-X web site and check out the details.

Regarding shortness of breath, I as well continue my down hill slide. I was cleaning my shack, when I stood up after washing the floor and I got wosie. The cardiologist is very concerned I will start passing out. Hey it's obvious the system don't give a sh_ t about my condition even though the cardiologist classifies me an emergency. He said they hospitalize people in my state to protect them. Nice fairy tale!

It's great that you have got things rolling. Keep me in step. I'm bitching like crazy over our over burdened inefficient system, but I'm holding the surgeon to his word, for a Jan surgery. Hence you and I may spend hell week together.

 

[jake]

When I visited the Henry Ford Hospital main campus in Detroit Michigan about an aortic repair, I was shocked to see that almost everyone who works in the ER was from Canada.

You want to know why you have to wait forever in Canada for treatment, it’s because all your healthcare practitioners were trained in Canada and than leave to come over to the United States to make more money. When I was in Henry Ford Hospital for a stent placement back in 09, 80% of the ER, and cath lab workers were Canadian. At least 1/2 the nurses on the ward were from Canada. I took the time to ask them all, why are you here instead of Canada? The answer was the same every single time "we make more money here."

What is wrong with the Canadian healthcare system is the exact opasit of what is wrong here!

Hospitals like Herny Ford Healthcare take advantage of Canadian Healthcare workers because they come cheaper than American healthcare workers. With all the money they are making at HFH, the level of care at Henry Ford Hospital was horrible anyway. They blatantly keep you coming back for more and more tests and procedures just to keep drawing money out of your insurance companies. 7 days in there for a stent placement at a cost to the insurance company of 56 grand and I had OHS in Ann Arbor at the University and was discharged in only 4 days for only 64 grand!

You Canadians crossing the Detroit River looking for better quality healthcare better head a little farther inland than Downtown Detroit!

 

[Greg a]

When I visited the Henry Ford Hospital main campus in Detroit Michigan about an aortic repair, I was shocked to see that almost everyone who works in the ER was from Canada.

You want to know why you have to wait forever in Canada for treatment, it’s because all your healthcare practitioners were trained in Canada and than leave to come over to the United States to make more money. When I was in Henry Ford Hospital for a stent placement back in 09, 80% of the ER, and cath lab workers were Canadian. At least 1/2 the nurses on the ward were from Canada. I took the time to ask them all, why are you here instead of Canada? The answer was the same every single time "we make more money here."

What is wrong with the Canadian healthcare system is the exact opasit of what is wrong here!

Hospitals like Herny Ford Healthcare take advantage of Canadian Healthcare workers because they come cheaper than American healthcare workers. With all the money they are making at HFH, the level of care at Henry Ford Hospital was horrible anyway. They blatantly keep you coming back for more and more tests and procedures just to keep drawing money out of your insurance companies. 7 days in there for a stent placement at a cost to the insurance company of 56 grand and I had OHS in Ann Arbor at the University and was discharged in only 4 days for only 64 grand!

You Canadians crossing the Detroit River looking for better quality healthcare better head a little farther inland than Downtown Detroit!

Have you ever been treated in a CANADIAN hospital by CANADIAN practitioners......I know that Michael Moore is not the most loved American film msker but you should really watch his movie ``SICKO``it looks at healthcare in North America and abroad

 

[Luckyguy17]

bdryer,

Alberta is not the only Canadian location with backlog.

As of a few weeks ago, there was a news story with a backlog of more than 600 with 1/3 considered urgent in waiting in Montreal. In our area the shortage is said to be with ICU nurses, really tough for the patients and attending practioners.

Lucky me, i went through last spring, with similar measurements to yours and the process to surgery took about 90 days, so hoping you are getting close..in my case the day of surgery was set about 30 days before and schedule was held.

I was a recipient of the Kryptonite cement for sternum as mentioned by Greg, my surgeon was curious and pleased to try me as a test case. Am glad he was receptive as bone rigidity, post surgery rapidly became a non issue for me, allowing me to be active with little pain, so am a strong proponent of this closure method and thankful for surgeon curiosity and willingness to try.

For valve choice my preference was bio and bovine (specifically Edwards). I ended up with SJM porcine and works fine and am fine with surgeon's judment call and choice at time of surgery.

I can relate to your frustration as the the wait for surgery is a tough time (possibly the toughest), when surgery goes well, as it does for most.

Again, hope you will soon be scheduled and "git it done". It is important to remember the human factor that the medical practicioners are also living your frustration with the system, every day. Your empathy to their challenges will be amply returned from them, on what they can control. You will likely have great attenders and some maybe less so...that is life, but you may be able to help them with their .... with the right attitude. Laugh with them when you can.

All the best with the process, yes it is a life changing experience and for most it goes well, try to stay on the positive.

the best

Gil

 

[ShezaGirlie]

Lyndsay Hartman from St. Jude told me the prime reason for pannus growth, is due to people not keeping their INR in range and being inactive. As for me, I'll take the added pannus protection of the On-X.

Oh really..!! Let's blame it on the patient -- gotta love that attitude..:thumbd: Wonder exactly what Ms Hartman's credentials are..:eek2:

Our own Robthatsme had his St. Jude valve replaced because of pannus growth and he certainly wasn't a couch potato and/or didn't pay attention to his INR.

Here's a good thread on "pannus growth" from last fall.
http://www.valvereplacement.org/forums/showthread.php?36056-PANNUS-TISSUE-Growth-definition

 

[normofthenorth]

Greg and Jake, I wonder how many of the Canadian health-care workers in Detroit commute from Windsor, i.e., they still live in Canada. Too bad the care sucked.

Bdryer, your response to me makes perfect sense. But are you convinced that you're actually going to succeed in becoming the first On-X recipient in Calgary? If there's a reasonable chance that they'll go with something else, despite your hopes and wishes, then it might make sense to influence their choice of "something else". Stating a second-choice preference could probably be done in a way that doesn't hurt your chances of getting your first choice.

I don't know much about the St. Jude valve except that it's pretty popular, but if the St. Jude people use "blame the victim" thinking to dismiss their failures from pannus growth, I'd go with somebody else!

BTW, do people with their original valves, or with tissue valves, ever get pannus growth? If it's super-rare in that population, then the theory that it's related to thromboembolysis (or something else that is peculiar to mech valves) might be right. If not, then maybe not.

Good luck with the wait-list!

 

[Bina]

Oh really..!! Let's blame it on the patient -- gotta love that attitude..:thumbd: Wonder exactly what Ms Hartman's credentials are..:eek2:Our own Robthatsme had his St. Jude valve replaced because of pannus growth and he certainly wasn't a couch potato and/or didn't pay attention to his INR.

Here's a good thread on "pannus growth" from last fall.
http://www.valvereplacement.org/forums/showthread.php?36056-PANNUS-TISSUE-Growth-definition

Janie, I found this little Lindsay Hartman snippet on google:

Lindsay Hartmann, a former captain and starter for the Dragon women’s basketball team. She led the Dragons to their first conference title in 20 years, ranked in the top 25 in the nation for 3 pt. %, and was a 4-time Academic All-Conference. A 2005 mass communications graduate, Lindsay is the global marketing manager for St. Jude Medical in St. Paul, where she is responsible for marketing the most widely implanted heart valve in history. She manages the product line, which grosses over $200 million, and manages the entire product life cycle from strategic planning to tactical activities. Lindsay volunteers with Special Olympics, Minnesota Foodshare, and is an e-mentor for ESL students at Eden Prairie High School. "
-----------------------
I don't see any references to being a surgeon or scientist......
Just more marketing.
----------------------------

 

[Greg a]

FRESH OFF THE PRESS Frasier report on wait times
http://www.fraserinstitute.org/uploadedFiles/fraser-ca/Content/research-news/research/publications/waiting-your-turn-2010.pdf
Appendix A sends you to EVERY provinces wait times

 

[bdryer]

Hi gang

Thx so much for your contributions to this thread. I have been pretty silent on the forum, cause I’m so disappointed with the health care system. Well December is gone and it’s almost the end of January. Did not get the call for surgery. I had to have the cardiologist office call the surgeon’s office, to get any semblance of an idea when the surgery will take place. Surgery has been put off into February. Pretty bummed about it. I am now convinced that if a surgeon does not give a specific day of a given month, then the surgery will not take place in that month.

Their is a line from song by the old Marshall Tucker band called “Can’t you see”. It goes, “Gonna climb a mountain, the highest mountain, Lord And gonna jump off, ain’t nobody gonna know”. That’s about sums up how I feel. What a disorganized inhumane crock of sh_t this wait game is. How do you fricken feel when the cardiologist calls you an emergency and the bloody hospital blows you off.

Thanks for hanging in and sharing my pain. I know others are hurting worse and have bigger challenges, but it sure is a world of depression when it happens to yours truly. You try to understand, but deep down you just can’t comprehend it. You wake up in the middle of a sleep shout at walls and stare into the darkness in frustration. I don’t need a surgeon, I need a Psychiatrist. Then again about all I’ll take from the Psychiatrist session, is that I come from a dysfunctional family and then again, I already know that.

No I AM NOT going to jump off no mountain. If I go to the effort to drive to the mountains, I’m going skiing. That would cause about the same result as jumping, just more fun with less terror.

 

[normofthenorth]

Hang in there, BD! As frustrating as these delays are (and they sure are!), your situation is probably still something that a heart-valve patient from almost any other part of the world would envy -- not to mention from ANY time in human history. Keep making sure they don't forget you, and you'll get fixed soon enough.

 

[Lionheart]

Hey Man,
Something to make you smile.
John

I'm gonna take a freight train down at the station, Lord
I don't care where it goes
Gonna climb a mountain, the highest mountain, Lord
And gonna jump off, ain’t nobody gonna know
Can't you see, oh, can't you see,
What that surgeon, Lord
She been doin' to me
Can't you see, oh, can't you see
What that surgeon, been doin' to me

I'm gonna find me a hole in the wall,
I’m gonna crawl inside and die
’Cause my surgeon, now a mean old woman, Lord
Never gave me a surgical date
Can't you see, oh, can't you see,
What that surgeon she been doin' to me
Can't you see, oh, can't you see,
What that surgeon, she been doin' to me

I’m gonna buy me a ticket as far as I can,
I ain't never comin' back
I’m gonna take me that south-bound,
All the way to Georgia now,
‘Till the train it run out of track
Can't you see, oh, can't you see,
What that surgeon she been doin' to me
Can't you see, oh, can't you see,
What that surgeon, what she been doin' to me

With all respect to Spirit One Music (BMI)

 

[bdryer]

Lionheart, a good ole fellow rocky mountain boy, singing me one of my all time Fav songs surely do put a smile on my face. Hey, I've got a little itch in the middle of my back, can ya fix that to? LOL!

Hey norm, you and others are right. It is always darker some where else. What stinks is that as the deferred surgery months progress, I'm getting deeper into the symptoms of AS. Hence I have renamed the months from my diagnosis of severe AS and ascending aorta aneurysm as follows : Oct, Nov, Dec, Jan, Feb and finally Morgue, oops I mean March.

 

[bdryer]

Hey Bina and Janie

Here is another Lindsay Hartmannism:
When I met with the surgeon, I was sitting on the fence between the St Jude Regent and the On-X valve, as Lindsay Hartman from St Judes confused me with what I now believe to be misleading information via a phone conversation, as to why On-X was not using siicone carbon composite. That being her statement of." On-X does not use silicone carbon composite, as Dupont required one million dollars up front for the silicone composite technology. Hence On-X elected to go with pure composite". She did say, that this is what she heard only, but still took it upon herself to give me this tidbit. [Hmmmm, used car salesperson tactics?]. She left it somewhat up to me to decide if On-X went with pure carbon to avoid the 1 million dollar fee. Very tactful! After our meeting I continued to research available aorta valve mechanical valve technology. I am saddened that Lindsay via the phone conversation occluded my early decision regarding valve selection with misleading stats based on "here say".

I then contacted Gilbert Pommepuy the Canadian On-X rep and posed the question to him, as to why On-X was not using silicone carbon composite. This was his response:
Silicone-carbide alloy carbon has been in existence since about 1970 when nobody knew how to control deposition of pure carbon on a graphite substrate, and the silicone mixture helped the process.
Patented ON-X carbon was created in 1994 by the same PhD who invited silicon-carbide alloy. He wanted to find a way to eliminate silicone carbide because it is somewhat thrombogenic . It took him a long time, a lot of research trials and a lot of persistence to succeed.
Gilbert at one time worked for St. Jude and said, they make very good valves.

What the heck, I was a roll and called the ATS rep as they use pure pyrolitic carbon and asked them why they do not use silicone carbon composite. Answer:
They went with pure pyrolitic carbon, as silicone carbide is somewhat thrombogenic. In no way did the ATS Rep slam St. Jude. Rather she said they are good valves and that their sure are a lot of folks walking around with them. Hence thats got to say something about the quality of St. Jude products.

I'm still trying for an On-X, but if I end stepping in time with the clicking of a St. Jude Regent, thats OK to.

Regarding the pannus thing, I asked ATS why they did not engineer into their valve, a defense mechanism to fend off pannus. They hypothesize that less is more in a valve. They also believe optimal flow through the valve will eliminate pannus. Interesting cause this is a kick-*** valve. Norm, this valve is not available, yet in the health region.