Hi Paul, I really enjoy reading your journal as you have an amazing gift. I am also a Canadian in Quebec just west of Montreal waiting in the system. On April 27th, I had a heart attack where I was rushed (ambulanced) from one hospital to another in Montreal where they stented my 90% multiple-blocked artery. They said my heavily calcified bicuspid aortic valve was so "suspect" he didn't want to crossover to work on the other bockages on the left side but that I would be needing OHS to replace the valve so they would do the required coronary bypasses at that time. I felt great while on short term disability; eating low-fat/low salt foods and walking about four miles a day. In July, I went back to work at 50% (half days) starting to feel out of breath again so I requested handicapped parking at work to avoid the 21 stairs up to the main entrance of the building. Been there over 36 years so I have contacts. On about July 14th, I had a follow up stress test echocardiogram with my cardiologist. Only lasted 5 minutes; totally winded. The technician and my cardiologist said my valve had narrowed down to 1.1 cm2 - moderate (in June 2009 it was mild stenosis at 1.6 cm2); so doing the math on that it had closed up .5 cm2 in the past year. I had read that surgery recommended at 1.0 cm2 or less. Not looking forward to being split down the middle but would really like to be able to brush my teeth or press the recall button on the remote without being out of breath. My next (5 month follow up) appointment with my cardio was set for Dec.08th but I really didn't think I would make it. I met a friend of a friend who is actually a nurse in the cardiothoracic operating room at the Royal Victoria Hospital in Montreal who works for the only Canadian cardiac surgeon referred to in Adam's book. She said she would see if she could get me a consultation with him and did in October. He said he would probably be operating on me anytime from 3 months to a year but to keep my Dec.08th appt with my cardiologist. I was so out of breath from July until Oct, I really didn't think I was going to make it but I kept plugging away. They all say the timing of surgery is so important. I can understand the too late part but no one can really say the importance of not being too early. During my pre-op evaulation day in January, I asked the nurse during the interview if there was a long waiting list for surgery as I had heard it was up to a year. She said, no, it's only 6 - 8 weeks. So on Jan.17th I had my cardiac catheter, actually a double (radial and femural) to check for coronary artery blockages through the wrist; and to check the valve (gradient pressures, opening etc.) through my groin. The arteries are clear; no idea why the others have cleared up but will ask at my next consult but my valve area (AVA) is now estimated at 0.77 cm2 (severe) and I have an enlarged aortic root (I suspect that to be an aneurysm). Also, left ventricle dysfunction with an Efficiency Fraction (EF) of 40%. All to say, Paul, I am also waiting like you and others. I am experiencing pain in my arms (shoulder joints and biceps) and suspect muscle atrophy. And I can't stop gaining weight!!! I am losing strength in my arms and hand. More questions for my next consult with my surgeon. We have no choice but to wait and hope they are making the right decisions for us. Hang in there, I am confident we will all make it through this. Take care... Eric Brenie
Hi to my dearest,
I know this is all taking a long time, but I will be there for you all the way through, and beyond. Thank you so much for the lovely flowers you brought me (and the card). We just have to figure out how to deal with this situation every day!
"Keep calm and carry on!"
I can appreiate your frustration. While i am now 8 weeks post-op and doing great, my cardiologist insisted for over 5 years that my moderately severe mitral regurgetation needed no surgery, until one day last summer I began to experience intermittant palpitations, then I knew that surgery was no longer an option. While the information can be overwhelming a second opinion should always be saught to unscramble the morse code.
I just heard from Denie, and how she asked people to pray for you. I am so sad to hear that you are experiencing this painful journey. I read quite a bit in your journal and stories, and I find it quite upsetting, to say the least. We often wonder, why does bad things happen to good people. I suppose I am thinking we are good people by the way this has been put forth.
I just want to say, I will be praying for you. I know, I'm thought of as the backslider, but ...
Only God knows my heart. I will pray for my best friend's son. She would have wanted me to do that, as she prayed for my children as well. My thoughts are with you and Eleanor, and I wished I would have known sooner.
You have a lot of symptoms that here, where I live (FL), would be considered "critical." I had NO symptoms that I was aware of, and only after the surgery did I find out that the slight dizziness I experienced occasionally was a symptom. I was lifting weights with a trainer until a few weeks before the surgery totally unaware I had a problem.
You mentioned the differences in the system. One of the things that people in Canada don't realize is that anyone in the US can go into an emergency room and receive treatment. They don't get to choose their doctor, and they may have to wait, but they do get the treatment. The major difference that I see is if your kid has the sniffles and you have health insurance, you take him to the doctor. If you have no health insurance you can still get him checked out at the ER, but it's a hassle and a long wait. Go to an American ER any night and there are dozens of people with their sick kids waiting for treatment. It's gotten so out of hand that now they're starting two lines in some of the hospitals. One for people with sick kids and one for people with true emergencies.
The woman who cleans for me has no health insurance, but her kid has a seizure disorder. All his medical care is covered. On the other hand, when she got a cold, she suffered through it, but when she had chest pains, they took her right to the hospital, did a stress test and echocardiogram and kept her for several days.
I am surprised that with all the symptoms you have that they feel you can wait until 2012. It seems to me that the wait can be a lot more nerve wracking than the actual surgery.
Hang in there. Keep the faith.
I guessed correctly! I didn't want to go into a long dialogue with the wrong person.
The holistic approach helps, mentally as well as physically, and God helps, too, but a lot of us are quite disappointed to discover that despite working out, controlling diet and cholesterol, and having regular checkups, and despite having arteries that are Spic and Span clean, we still have to have heart surgery.
I've had a heart murmur for as long as I can remember. The first time it was mentioned to me was 52 years ago when I was pregnant, but nobody ever said that it could lead to heart surgery. I was quite smug about the fact that I went to one of those places where they do a CT scan of the coronary arteries and found NO plaques in my arteries. I felt quite superior that I was doing all the right things to avoid heart problems.
Then, when I turned 65, my endocrinologist, when checking my thyroid with his stethoscope, said, "That murmur of yours is getting very loud. I can even hear it in your throat. You really need to see a cardiologist." I thought he was nuts. However, he was insistent, and my late husband had triple bypass, so I went to the cardiologist.
There I was told that I had aortic stenosis but that it "wasn't bad." I just figured it was one of those things one got when they got older. Every year the cardiologist's office staff called me and insisted that I go in and have a stress test which I thought was nonsense. I passed it with flying colors every year. I'm not kidding. I was superwoman. I certainly didn't have anything seriously wrong with my heart, right?
Last year the cardiologist told me that the stenosis was advancing and that "in a few years" I would need surgery. Now I am an educated woman, did very well in the business world, owned my own business for years, had a column in an industry magazine, but about this I was stupid. And arrogant. I thought, "Not ME. I simply could not have a heart problem." I was invinceable.
In September(2010) they hounded me again, and so once again I went in for the stress test. Within 3 minutes I knew something was wrong. I couldn't stay on the treadmill forever as I had previous years. And I got a pain in my chest. One week from that day I had a catherization and the cardiologist told me and my husband that I needed surgery--soon.
I was in shock. NOT ME! Then I asked, "So they put a stent in, right?" and the cardiologist answered, "No, we've got to crack your chest open." I said, "NO. I'll just take some pills instead." He replied, "That's not an option. This is not like clogged arteries. You need open heart surgery and you need this soon." When I asked how soon, he said, with a very worried look on his face, "definitely before Christmas." Three days later I was in the surgeon's office and he said, "This is urgent. You need to do this now." and three days after that I was having surgery. I barely had time to make sure my will was up to date!
The difference that I noticed between the people who post from Canada and the ones who post from the US is it seems that in Canada they give you plenty of warning. For example, Darrel said that the doctor said he'll be OK until 2012 sometime. That gives him a lot of time to worry which can cause great anxiety. Nobody that I know in the US is told they need surgery until it's imminent. I think that when people in Canada think they're waiting longer than the people here it's because they're told much sooner. Nobody ever really scared me with the thought that I'd need surgery. They did stay after me to make sure I had the checkups every year but never said, "Oh, you're going to have open-heart surgery someday." I know 5 people locally who have had this surgery, and all were in the operating room within a couple of weeks. So, as I said, I think that in Canada they tell you sooner, and that's what makes it seem as if you're waiting a long time.
Essentially, I'm glad I didn't know (although I could have dropped dead). I had no time to worry. Before I knew it I was home recuperating. I have a full sternotomy--8" long, and I'm 71. It wasn't a cakewalk, but then again, I've had major surgery before (kidney removed 29 years ago) and this didn't compare with the kidney operation which was much worse.
I also think there are a lot of great places where this surgery is done. I know the CC is famous for their team, but all over the world thousands of us every year survive and thrive. So I think it's rare that people run into a "bad" heart surgeon. Sure, some are better than others, but if you're at death's door and they save your life, who's to complain?
When I had the tumor on my kidney and collapsed and almost died, they brought me to the closest hospital -- it's an ambulance rule. It was the WORST hospital in the area, but lo and behold, they not only saved my life, they did what my modern day surgeon told me was ground-breaking surgery for 1981. So who's to say who's the best and who's not? I might have gone to the best hospital in the area and died. We don't know what God's plan is for us, and I do put my trust in him.
If you look at my posting, you'll see the information about the 92 year old father of a friend of mine and the revolutionary procedure they used on his heart. They are only doing this on very old people who are too old for regular surgery. It's all experimental. The science of this surgery is changing rapidly. I firmly believe that in 5 or 10 years, just like they do stents for coronary artery disease, a lot of people will not have to have their chests cracked open. In the meantime, anything they do now to save my life and give me a few more years to see my grandkids grow up and to enjoy my second marriage (he's widowed, too), I'm in favor of.
This web site is so important. It gives comfort to so many people. Adam Pick did a wonderful thing when he started it, and though he describes his surgery as "worse than expected" I think that in some ways helps people who are surprised when it's not that bad after all.
Keep posting and know that, if you were at death's door, they'd probably rush you right in to the hospital in Canada. Maybe I'm wrong, but I hope not.
Keep posting. I've got you on my notice list.
You folks have been in our thoughts a lot since we received your Christmas photo. Thanks for letting us know just recently about your journal.I finished reading it all now-wish we could have visited today in person and capped it off with "faspa". Next time we come to Wpg. to visit our kids, we'll have to meet.It's been too long since we spoke in person.
Our lives are a little busier than we like right now, but things will start slowing down at the
end of March and more so in May or June. I plan to "retire" from most of my committments/jobs then .Tony's been easing
out of full time carpentry by taking most Thursdays off and no work or shorter hours if it's fiercely cold . Now that we know about your"site" we'll keep looking for updates. We
usually keep our Sundays pretty low key to
re-energize ourselves for the new week, so that would be a great time to call us. We're
still at 637-2518. will be doing more praying for you as we see more of what you're up against.
Best wishes from a fellow Canadian going through the same issues without the religious conviction. I to am waiting for "the phone call" from our closest cardiac hospital (320 kilometers) in Halifax. I guess I get the TEE procedure before they sit down and give us the bad news and all the air leaves the room. I know exactly how you feel Paul.
so sorry about you not getting a firm date. i have all kinds of human solutions, but as you know, patience is not my strong point. i will believe WITH YOU that God is in control and that you will not only survive until your surgery, but that you will THRIVE and improve. i speak faith and healing into your life, into your heart. we stand with you for resurrection life! amen and amen. not sure if this is the appropriate place to post this, but that's my input. ONWARD! VICTORY!
Just letting you know that I made it to your site. Funny you got yours going before I got mine up for the ministry, and all on a bum heart valve. I'll have to come back to finish catching up on your blogs but will be praying you through this whole journey. The Spirit is with you and so is the love of Jesus. We'll keep up the vigel on this side of the border.
OOPPS! I ACCIDENTLY pushed the wrong response and was unsubscibed. I realized what I had done immediately and now am back on. VERY interested in following your steps on this journey you are taking. AM holding you in prayers and in my heart (in the night when I awake as well) You and Ellie will make it through together. How wonderful that you have such a devoted companion. Submit her name for sainthood. Await further news on progress and developments. XOXO Ant H.
Married in 1971?! You both robbed the cradle.
As far as pacing yourself, it's a good thing that you have a variety of interests to keep you occupied. The outdoors will have to wait, so I'll do my part in filling the gap!
You and your "angel" have been a blessing to all of us, so take care of yourself.
Our thoughts and prayers are with y'all.
This is a great way to have a better understanding of the journey you've travelled so far. Am looking forward to visiting your blog and keeping up-to-date as you travel this road. Continuing to pray for both of you, dear friends :)