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    KSGAMMA   51,126
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The Power of Positive Thinking


Wednesday, November 06, 2013

On 23 August of this year, I wrote a Blog entitled “When life hands you lemons ... do more than grin and bear it.” In that Blog I explained that I have a number of medical conditions including Crohn's Disease (with Rheumatoid Arthritis pain and with allergies), Obstructive Sleep Apnea, Restless Leg Syndrome, Dilated Cardiomyopathy (with Congestive Heart Failure), Type II Diabetes (with eye issues), Osteo Arthritis, and most recently, Mitral Valve Regurgitation (a leak in the Mitral Valve in my heart). I stated that “When you work on developing a positive attitude and on building skills to compensate and work around your issues that there may be setbacks and you may find yourself starting the process over again.” and, “If so, remember what you already learned and make use of the resources you already dug up and used and make use of them again.” The following paragraphs are also from that Blog:

"One of the best tools I have found is SparkPeople. ... As I learn more and more and participate more and more, I am finding it an invaluable resource and tool. I track my glucose levels and my blood pressure levels, I track my nutrient intake and my exercise accomplishments. I read articles, blogs, and postings. I write blogs and postings. I watch videos, try recipes and exercises. I am sparking and helping others to spark and making new friends every day!"

"There is another important feature to making every effort to live life to the fullest. Attitude. It's fine to sometimes get depressed or upset over your circumstances but do you want to remain that way? Do your family and friends want to be confronted with your defeat day by day? No. Life has given you lemons, grin and bear it, but do more. Find some positives and give yourself rewards as you accomplish things. Look for the humour in a situation and laugh at yourself and with others. Realize that life goes on and how much you get out of it will depend a lot on how much you put into it. It may not be the life you have been used to but it can be a good one none the less."

Also in that Blog, I mentioned that I had appointments at Toronto's Sunnybrook Hospital to again see experts in their field – a Cardiologist and a Cardiac Surgeon – to see if the leaking valve can be repaired with a clip, hopefully with a new innovative procedure but if not, with open heart surgery. When my husband and I met with the Sunnybrook Cardiologist we learned that, in his opinion, open heart surgery would be dangerous for me because of the damage already done to my heart by my Cardiomyopathy. He said that although the clip procedure may not give me 100% positive results, it is less invasive, less dangerous, and if I qualified for the procedure, most likely the best option for me. He explained that I would need to have tests done to determine if my heart valve is in a condition that they can fix with the clip. If the tests show that it is, I would then go on a waiting list to have the procedure done. It is so innovative that the Government does not yet fund it and the Hospital relies on donations to their Foundation to fund the $36,000 Procedure. He also explained that there were no guarantees on the outcome and that it would not heal the previous damage done to my heart by the Cardiomyopathy. I was aware that it wouldn't heal the heart as a whole and was therefore not surprised. He also said there was time for me to be on a waiting list and we
need not worry about that.

We were unable to meet with the Surgeon that day after all and would have to reschedule. We left the Hospital with some of our anxiety relieved however and with the hope that this latest issue could possibly be taken care of.

The tests were scheduled for a Thursday and a Friday in late October. We booked a hotel room for Wednesday and Thursday and off we went once again to Toronto. On the Thursday, we arrived at the Hospital at 7:00 am and I had an Angiogram (also known as a heart catheter) up through my right wrist to my heart and learned that my arteries have no blockage and I would not require stints. Good news! While they had me prepped they decided to go up the veins from my groin to my heart to measure the pressure in my heart. I'm still not really sure what that was all about. Recovery was worse than the procedures. You had to lay flat on your back for 3 hours with a sandbag on your groin and a heavy bracelet on your wrist to prevent internal bleeding. I never lay on my back unless I have to for my Crohn's gut pains. It was then I remembered why. I have arthritis in 3 spots in my spine and oh was it painful to lay there not moving for such a long period of time. I will admit that in the last 1/2 hour, I didn't take it well.

On the Friday, we first met up with Sunnybrook's Head of Cardiac Surgery. He was surprised at my age. I have just turned 60 and apparently most people with this condition are in their 80s. He said to us “If you were 80 and I could give you a couple more years, that would be great, but you aren't 80, you are 60.” He explained that the clip procedure we were hoping would be the answer for us has never had a 100% success rate and that it may not be the best option for me as it is only a short-term fix. I was stunned. I had been so hopeful and to my way of thinking, this could change everything.

After our appointment with the Surgeon, we went to the Short Stay Clinic and I had the final procedure scheduled called a TEE Procedure. They first took an Echocardiogram in the usual manner and then with a General Anaesthetic, took another but from inside the throat where they could do the ultrasound right beside the leaking valve and get the best picture of it. Sunnybrook is a teaching Hospital and while we were waiting for the Anaesthesiologist, the doctor who was to perform the Procedure explained to interns what the procedure is all about and about my condition in particular. He described my heart as being in Stage 4. Stage 4, what was that? I didn't get an answer from the Doctor so I Googled it after we had been home for a day.

I must say, I was terribly glad I was at home alone when I read what Stage 4 meant. There are 4 stages of Congestive Heart Failure and 4 is the final stage before the end. It also said that there is progression from Stage 1 to Stage 4 and hope if caught in the early stages but that there is never any going back from one stage to a lower stage. I knew that the ejection refraction rate for my heart - the function of my heart - was only 28% but close to the end? Yes, I have trouble with mobility, catching my breath, lack of stamina, inability to walk very far, and tiredness to the point of fatigue, etc. but I still go to the pool and do my Aquafit exercises, not as rigorously as I once had but still spend an hour plus working out usually 4 times a week. Although I need frequent rests, I work in my garden and in the house. There must be some mistake. I'm no healthy specimen but I don't see myself as on the way out. Just think of how healthy my heart must have once been to withstand the flu virus that attacked it and caused the Dilated Cardiomyopathy. I was anxious to learn the results of the TEE Procedure and what the recommendation would be from the two Sunnybrook specialists and now I was frightened and anxious about the condition of my heart.

I had an appointment scheduled for the Wednesday with my Nurse Practitioner (we don't have a family physician although she works with one). I told her of my various appointments at Sunnybrook and also about hearing my heart was in Stage 4. I explained that I hadn't known what that was and Googled it and asked her what was what. She was surprised and told me that since my first diagnosis almost 10 years ago, my heart had been in Stage 4. I'm sure I had a look of horror on my face. She reassured me somewhat by telling me that the earlier prognosis for me was 6 mths to 6 years and now it was 9 plus years, that I had beaten the odds. She went on to say I was not a textbook case as I was much more active and resilient than most people with 28% function and that she felt that was mainly due to my determination and good attitude. She said she felt I would get this leak fixed and that I would show everyone that it is indeed possible to go back from a Stage 4. She also did a quick review of my other conditions and how well I was managing those even recovering quickly from the early stages of kidney failure this past summer.

After my appointment, I sat in my car and had another good cry. I thought back to the pain and anxiety of the last several days and how miserable I had felt. Not only was I miserable but the people around me were feeling miserable – misery does love company. I gave myself a mental shake and decided enough was enough. Nurse Joanna was right. I've beaten the odds before and I can do it again. Fixing the valve in my heart may not heal my damaged heart but it was healing itself due to a study I had been in the first 5 years of my illness, again at Sunnybrook Hospital. In that study, I was given an extra wire in my heart when they implanted an ICD (pacemaker and defibrillator) in my chest. It was the hope of the researchers that this extra wire would help heal the heart. Before the leaky valve, my function had gone from 28% up to 55% and 60% is considered normal. I am not a textbook case. This wire is still in my heart and after the valve is fixed perhaps it will do it's work again.

I realized that as long as I was miserable and making others feel miserable, I felt the full weight and magnitude of my conditions and if I wanted any relief and any quality of life, I would have to put a check on my current behaviour and attitude and re-start being thankful for what I have and an attitude that looks for the good in situations. I remembered my previous Blog about life handing you lemons and I re-read that.

It's now the following Wednesday. I am still anxiously waiting to hear something from Sunnybrook but I once again wake up in the morning thankful for what I have, even with the creaking bones, sore muscles and sluggishness. I remember that I will soon limber up as I get on with my day and I re-check the calendar to see what lies ahead for me that day. By the time my husband is up and about before 6 am, I have indeed limbered up, I've taken care of any low glucose levels if any, I've got a smile on my face and I am confident I know what chores and appointments have to be taken care of that day. As he likes to say, “I'm still on the right side of the grass” and I'm glad of it. My daughter and my grandson might phone or drop in that evening and I would get to visit with them. I might have a session set up with a friend or two to meet for a visit. It may be one of my husband's days off work and we might do something together. I know I'll have a medical appointment or two. It might be one of my days to go to the pool and exercise, something I love. It might be a day beautiful enough to be outside working in my garden or going for a short walk. There are so many possibilities and I let myself forget that. These things are things we often take for granted but for me they are major accomplishments and mean a lot to me.

My life has changed so much with each new setback but I've learned that a positive attitude goes a long way to making living with those setbacks not only bearable but that there is still joy and pleasure in my life. My husband has been both a rock and a teddy bear and I don't think I could have made it through all this without his love and support and the support of other family members and friends - both here and at home. Now, if I could just get this leak fixed, and soon!
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Member Comments About This Blog Post:
4KWALK 12/16/2013 4:03PM

    Lin,
You truly are an amazing person. I think you should print your story and pass it along.
The power of a positive attitude is indeed helpful and healthy.

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SOFTLYOPTIMIST 12/6/2013 9:44AM

    Amazing blog post. I'm sure there will be many people on here thinking of you on the 18th, as well as those we have around you.

An issue I want to start working on is loneliness. I'm not surprised to see you say: "

"My husband has been both a rock and a teddy bear and I don't think I could have made it through all this without his love and support and the support of other family members and friends - both here and at home."

With good friends and family we can face the most challenging experiences in life, when alone and lonely even an ordinary day can be tough. It's obvious that through your own hard work you have managed to keep your heart as healthy as is possible with the conditions you have, am glad to hear you have that important emotional support too.

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LIVE_AMAZINGLY 12/3/2013 3:45PM

    I have had some level of heart failure since 1987, but full-blown cardiomyopathy and CHF starting in 1999 - 14 years ago. Initially I had 3-5 months to live; a few months later that was changed to 3-5 years to live. About 8 months after being ‘sent home to die’ I was told, “You might live to 60, at best, barring ‘sudden death’, which can happen at any time.’ That was when I was 48. I am now 62. Now they tell me, “If you eat really healthy and exercise you may make it to 70, at best.”

Considering I was in left-ventricular heart failure when I was only 36, I have now lived with heart failure for 26 years. Course my activity level has only been greatly effected since 1999. And, my activity levels have gradually and seriously declined in these past 14 years. But, as my blog heading says, “Every day above ground is a good day.”

In 1999 the doctors first hid from me what was going on with my health. They told me, “It’s only your mitral valve prolapse.” But, I (knew) beyond a shadow of a doubt I was dying, so I got copies of my medical records, and learned the seriousness of my medical condition, and how short a time I was really looking at. If I hadn’t secured my medical records I almost surely would have been dead in the time they expected, cause without knowing the extent of things I wouldn’t have been able to take the actions necessary to save my own life. Cause it is (I) that saved my life - not the doctors.

I think it is absolutely wrong when doctors do not tell the patient the full and accurate state of their health. I think you should have been told 9 years ago that your were THEN in stage 4, and given only 6 months to 6 years to live.

A patient has a right to know the full facts, so that THEY can choose what to do, if anything, to change things; and what they want to do with the rest of their life, or what changes they may want to do in whatever time they have left, if they want to make any changes. Without knowing the facts, patients lose the rights to make these decisions because doctors choose to ‘play God’ and take those rights away from the patients under the guise of “Don’t want to upset the patient”, “Don’t want to burden the patient.”, “Don’t want the patient to suffer emotionally any longer than they need to.” But, to me, knowing in every cell of my body that I was dying, and having doctors lie to me and deceive me, and having me wonder to the inth degree what the real truth was, well to me that caused more emotional distraught than dealing with the full truth, and facing it head on. Cause I can deal with head on, cause then a lot of the decisions and lifestyle are ‘in my hands’. To me it has been very empowering to know the full truth.

Also, knowing the facts all this time, has allowed me time to grow and change, and also change in my relationship with my maker. If I hadn’t learned the truth, I would never have made this growth or these changes, and of course, if I hadn’t known the facts I would have likely only had a few months on this earth, instead of 14 years and counting.

You seem to be doing all you can to deal with your disease. You actually seem to be much more active than I am able to be any more. But, I still feel that I can improve. And, it’s nice to see that you are determined to improve also. Never ever give up! (I know you won’t…)
emoticon emoticon

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KSGAMMA 11/18/2013 2:25PM

    BOOG UPDATE

I got an e-mail from the Administrative Assistant to the Cardiac Specialist at Sunnybrook Hospital saying the Dr. had tentatively booked me for the Clip Procedure on 18 Dec - tentative because dependent on funding being available. I was confused - why were they booking something the Surgeon said wasn't for me? Was he now in agreement with the procedure and if so, why the change? I received a phone call from the Cardiac Specialist on Fri which went a long way to alleviate my fears. Apparently after the 2 doctors, together with a rep from the company that makes the Clips, reviewed my test results, they felt my valve was particularly suited to the new Clip Procedure. He also said that instead of a 5-10% chance of being able to significantly stop the leak, there is now an 85% chance. Stopping the leak is more of a certainty with open heart surgery but my heart isn't in good enough shape to withstand the heart by-pass during the surgery and to restart afterwards. He warned me once again that this Clip Procedure would only deal with the Mitral Valve Regurgitation and wouldn't cure my heart. In 2006 I participated in a 5-year study at the same hospital and when I was given my pacemaker/defibrillator, an extra wire was put in my heart. It was the hope of the Dr. conducting the study that this extra wire would help the heart to heal itself. In my case, my heat function went from 28% to 55%. 60% is considered normal. (This figure is the amount of blood the heart is able to pump back out of the heart to the lungs to be oxygenated.) It is my hope that once this leak is stopped, or at least partially stopped, that that wire will once again be able to help my heart to heal and against all odds, that I will improve once again! the Dr. sounded very optimistic and I know I am. emoticon

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LINDAM.1 11/17/2013 10:42PM

  emoticon It makes us better. You are proof.
emoticon for working out. After open heart just getting to rehab was tough.

emoticon

Comment edited on: 11/17/2013 10:43:36 PM

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PAULPARKINSON 11/17/2013 8:15PM

    in 2005 I was told I had a month before my mitral valve would fail completely so 2 weeks later they went in and did Mitral valve annuloplasty and put a ring in. The surgery lasted 8 hrs because the ring would not hold pressure the first 2 tries. Then finally the 3rd try the ring held so now I do not have any noticeable leakage. In 2001 I had a pacemaker put in to correct a sleeping heart rate of 25. They can do a lot now a days to correct the issues. I am currently 52 yrs old. Being positive helps keep you from worrying all the time.

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WETPTARMIGAN 11/7/2013 8:12PM

    Great blog. Great phrase "right side of the grass". It's been my experience that people with your attitude and your willingness to do what you can to improve your wellness put yourselves on the positive side of the statistics curve. You go, girl! emoticon

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MCJULIEO 11/6/2013 11:46PM

    Thank you!

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VOLARI52 11/6/2013 11:32PM

    When ever I start feeling sorry for myself I'll remember your words....".if I wanted any relief and any quality of life, I would have to put a check on my current behaviour and attitude and re-start being thankful for what I have and an attitude that looks for the good in situations." Great way to live and enjoy every moment.....thanks for sharing ...my prayers are with you.....keep us posts on your journey!

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BETHLOVESBIKING 11/6/2013 7:40PM

    What an inspiration you are! So much courage in the face of problems with your heart. Your nurse practitioner sounds wonderful--and she is telling you that you aren't the typical stage 4 person--you are more resilient, more positive, and more active. That is wonderful! Stay strong. Thinking of you! emoticon

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ALEXSGIRL1 11/6/2013 6:58PM

    I have a friend who son had a tumor on his brain and then a stroke at 12 . he is fully recovered and 18 now with a tattoo on his chest that says mind over matter. his idea . you are a courageous inspiration to us all, I love how you seek out and grab the happy in each day. I love your determination and your hard work an attitude is healing your heart and making it stronger. you've been given a hard path but you walk it well. hugs

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PATIENTHAND 11/6/2013 5:38PM

    thank you for sharing.. I needed an attitude check myself.

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LYNCHD05 11/6/2013 4:45PM

    Linn, I agree with Charlotte you are an inspiration to us all. I read your blog and thought what an amazing lady. You have had so much to deal with and have handled it so well. You go girl????? Show them that everything is not a text book case and you are going to come through this. Thanks so much for sharing with us and doing it so eloquently.

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MINIMOE1 11/6/2013 3:30PM

    Lin - i am in tears, bless your heart in all senses of that saying. emoticon What a strong, courageous person you are! You've shown us that there is indeed power in positive thinking - a lesson we would all do well to learn and apply every day.


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*RENEAT* 11/6/2013 1:33PM

    You are an inspiration to all of us! And a true testament to the power of being positive!! Thank you for sharing this with us. It is something I need to remind myself of often. I will be waiting to hear how well you are dong once you get the clip for your heart!! Have a beautiful day and thank you again! Renea

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LEEWORD 11/6/2013 12:30PM

    Good luck with the leak. Both my husband and my mother have had mitral valve replacements so I know what you are talking about.
60 is indeed young for all you are dealing with. I hope you can live in the moment and enjoy and cherish all that you have. Why waste your life worrying about a future you cannot control.
My prayers are with you. Stay strong.

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