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!