Social Medicine in Ontario

Well, just got the word on when I might expect my ablation....
Ready?
Drum Roll please.
As of right now I can expect a phone call sometime in November/December 2015 to BEGIN the process, which then takes up to TWO MONTHS before having the procedure done.

For those that may not recall, I have been in NSR continuously (as far as we can tell) since starting Tikosyn 500ugc twice daily and being electrocardioverted.

I have chest pressure and palpatations about three times a week, each lasting longer than the last... perhaps 2-3 hours at the moment but have no idea if it is AFIB and having said that, the last time I complained of this they put an event monitor on me for two weeks and saw nothing more than lots of skipped beats, cured by taking about 1.5 - 2.0 grams of Potassium. I found Potassium Gluconate dissolved in soda water quick. Also low sodium V8. A beer cup full of low sodium V8 gives you 1.5g. The Potassium Gluconate (I use NOW brand) works much faster and is easier to store. It come in a large plastic bottle that lasts forever. I am about to reorder from our supplier.

My quality of life continues to diminish. Insomnia. High frequency trembling/electricity flowing through the body at centre of mass/chest, balloon head (dizziness, bloated head feeling) from wakeup lasting up to 6 - 8 HOURS now. Etc. My love affair with Tikosyn is, sadly, over. But it does appear to maintain NSR in the meantime.

Off the record it is Ontario's Liberal government that writes the cheques and is the reason for the delay. The hospital has actually outfitted a complete second cath lab for ablations but it remains sealed for lack of funds to operate it. Period.

And as a matter of interest, the hospital is no longer starting people on Tikosyn. I suspect they are not happy with the side-effects although the performance of the drug is excellent. It is a dangerous drug to use - interactions with other medications can be lethal. If you are on Tikosyn, do not take the hospital's word on interactions nor the word of any doctor or nurse nor the Pfizer site. Do a good search on drug interactions to find out the story.

So, I am upset a wee bit but coming to terms with waiting for up to ten months before getting my ablation. No private insurance here in Ontario for me... and even if I had some it would likely not pay to speed me into the cath lab for my ablation.

Will keep all of my friends on here posted as to any changes but right now it looks like it will be the beginning of 2016 before I see a cath lab. And quality of life simply does not come into play. Pity.

Anyone here in Ontario thinking of voting Liberal or NDP, think again. Your health and your life may depend on it.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Murray:

So sorry about your situation, that is terrible. A lot of us in the states were extremely angry that our Gov. rushed through a healthcare system that 65% of the people do not want. Anything that is said to be free is not and most gov. programs are very inefficient, hopefully with a new president we can overthrow this Obamacare and get a much better healthcare system.

It has all changed here in the U.S. as well, I had hurt myself, my shoulders, thighs and lower back, I went to an Ortho doctor and he took xrays of my shoulders, talked to me about my rotator cuff injury, I asked him about my lower body, he said we can only work on one area at a time, and made an appointment for me to return in about a month, I was flabbergasted what kind of crxp is this, one body part at a time.

Liz

Murray, I'm really sorry you are having such trouble. But do remember that it is because you have opted for the best that you have such a long wait time. When I was waiting for my turn at Southlake, my cardio told me he could get me in for an ablation at Toronto General in one to two months, as opposed to the year I waited. I turned it down, as I am sure you would too, because I wanted Dr. Khaykin or Dr. Verma and no one else. Even if Southlake could open up the new cath lab, who would be doing the ablations? Would you be happy with one of the new EP's staffing the new lab or would you wait until Dr. Verma could do it for you? We do have options here, and I believe we are lucky in that.

I do wonder, though, whether it is possible to try a different anti-arryhthmic now. Have you discussed this with Dr. Verma?
Marg

You are absolutey correct, of course, Marg but we sometimes lose track of this when suffering. Here we are today at about 1:30 p.m. and I have been awake since 5:15 a.m.......... after a miserable night of sleep (sorta). This is about the time that my hair starts to fall out in great big clumps. Thank you for your post - it puts things back into perspective instantly. Dr. V. has promised to do the ablation start to finish, hands-on. Southlake is heavily into cutting edge research on ablations and I expect this is the reason for the second cath lab. If I had the choice (and I believe that I do) I would 100% wait the year to have one of the aforementioned work on me. Especially with the added complication of an enlarged left atrium that took one year to grow and 4 (it will be 5 when I undergo PVI) to shrink back down. No thanks to my prior cardiologist who shall remain un-named........ I believe he is retiring, who left me in constant AFIB for a full year without so much as an attempt at electrocardioversion until the one year mark... and threw his hands up in despair. Sic. The referral to Dr. Verma/Khaykin et. al at Southlake was a godsend as was the listing of their names on this board and several conversations with members of afibbers dot net.

Thanks for bringing me back to reality. Truth is that I could probably have my ablation almost immediately if I were to go with another hospital and EP, through our contacts and shorter waiting lists. Truth is that waiting up to a year for Dr. Verma is worth every moment of the wait.

I just wish that gravol was not part of my morning regimen. I wish there were some way to connect the Tikosyn definitively with my untoward symptoms... the only way, of course, would be to STOP taking it and see what happens. Not happy with that route as Tikosyn has supposedly kept me in NSR for several years now.

The nurse practitioner that I spoke to the other day who triages the ablation list suggested for a moment that I come back into the hospital to see if a lower dosage might make a difference while keeping me in NSR but I'm not happy with the prospect of going back into AFIB and having my LA enlarge again.

My AFIB does not present with a rapid pulse rate (at least it did not) and was only visible on EKG where it was obvious. And the shortness of breath and fatigue were abysmal when I was in AFIB. I could not climb the stairs to our second floor nor walk to the park. Funny thing is that the cure (TIKOSYN) leaves me in the same position much of ]the time.

Wondering if there are afibbers out there that are in AFIB with normal pulse rates? And how many?


Roll on December 2015!

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Murray - The hair falling out could indicate thyroid involvement which could also be driving your other symptoms.
Have you had a recent total thyroid profile assessment that is more than just the TSH?

So sorry to read about all your misery. You've had more than your share and I wish you could be seen sooner by Dr. Verma.

Sending you positive thoughts and energy...
Jackie

Dear Murray,

I think this is a nightmare situation but I suppose in any system if you go after the most sought after you might end up with a wait. Each healthcare system has it up and down side for example National Health England is underfunded but manages to do a lot with very little however timeliness is not one of its leading qualities. See here for a breakdown on different countries healthcare.

Murray,
My heart goes out to you considering all that you have been through during the past few years. I commend you for your patience and efforts. You have come a long way and it's unfortunate you have to wait another year for an ablation. I travelled to Bordeaux in 2005 for an ablation with Prof. Haissaguere. I had to wait five months, but it was well worth it. I had four wonderful years with no afib before it returned. When I look back, I should have stayed in Bordeaux a couple more weeks and had a touch up done. I did have a touch up done in Vancouver in 2012 which I would say was partially successful. Presently I am doing pretty well with only one mild afib attack in the last year and a half. It's wonderful that us Canadians don't have to pay a penny out of our own pocket, but the unfortunate thing is there are really only two top notch Drs. in the country and the wait lists really suck. Hang in there Murray, the time will go by quickly. I'm curious to know if a patient from another province would be covered if they travelled to Ontario to see Dr. Khaykin or Verma.

Best wishes Murray,
Lou

Thanks for all of the kind words friends.
Murray L

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.