Heart disease affects more women across Canada than any other disease, but what is it like to live with it? Debbie Rae-Mowat opens up about day-to-day life with a cardiovascular condition that in 2004 only left her with a 50% chance of living five more years. Five years later, Debbie is still going strong and reflects on the impact this disease has had on her life, her daughter and her health.
When I was approached about doing this blog my first reaction was excitement. It was a huge compliment. I found it ironic that me, of all people, had been asked the do this. I’m not the greatest at expressing my feelings and here I was about to open myself up to the world!
Once I started to realize what I had gotten myself into I began getting cold feet. I felt like I was in over my head but, because I had made a commitment, I knew I had a responsibility to follow through. I was very nervous when I submitted the first blog. I didn’t know what to expect, what type of reception I would receive, or what I could “give” to the readers. I’ll never forget receiving that first comment. I read a little, cried a little, read a little, cried a little! It was then that I realized this was going to be a great experience.
The feedback I’ve received has been incredible; the phone calls, e-mails and comments on the blog itself. Many have conveyed to me that they didn’t understand the extent of my illness, while some weren’t even aware there was anything wrong. There have been others that I’ve never met – don’t even know their names – and they’ve passed on kind words of encouragement and understanding through friends and family. What’s even more incredible is being told by many strangers that I have touched them. I never thought that by telling my story, others would feel better about their own.
I’ve learned this past month that there are so many of us out there, especially younger women, who are fighting Heart Disease. While I once felt very alone with my struggles, I now feel renewed hope – hope for myself and others like me. Two women almost lost their lives to heart disease and here they are, 12 and 13 years later, able to share their stories on this blog. July 21st will be my five year “Anniversary” – and what a celebration it will be!
If nothing else, I am confident that this blog has given a positive light on an often dark situation. This can be a very frightening rollercoaster ride – so many ups and downs, but with great doctors, technology and faith, many good things can happen. I’m living proof!
I have to admit, once it registered that my heart was back to normal, I believed that would mean “normal” – prior to developing Heart Disease. Once again, I was very wrong.
I continue to live with restrictions and limitations. I can’t use simple things like ibuprofen, cough and cold products and many herbal remedies. I still take blood pressure pills and a beta blocker as a preventative measure. The beta blocker was recently reduced. I did well with the first reduction; however, once I reduced the medication a second time I started experiencing “symptoms”. I was nervous but thought I’d give my body a little time to adjust. After five weeks, and no change, the dosage had to be increased once again. I knew I was a “lifer” with these pills but hoped I could reduce the dosage a little more. Not so lucky, I guess…but it’s a small price to pay.
Even when you are back to normal Heart Disease has a way of holding you hostage. You become very aware of how your body functions. When anything seems out of the ordinary, panicking seems to be the first option!! For the most part though, I try to just “live life” and put to the back of my mind where I was five years ago. No matter how much Dr. Jeejeebhoy and Dr. Graham reassure me, deep down, I’ll always live with fear – fear of re-developing Cardiomyopathy or Congestive Heart Failure. My heart has been weak once…I’m afraid it won’t take much to get there again.
In the past two months I’ve been experiencing rising blood pressure, increased heart rate, swelling, shortness of breath and fatigue. I saw Dr. Jeejeebhoy this week, apprising her of this development. I’ll have some routine tests in the coming weeks to confirm what she already believes – everything is okay. My body might still be equalizing from the medication changes or it may be something as simple as my 10 pound weight gain in the last five months…as my body is considered “unstable”.
Regardless of the outcome, one thing is for certain; I must become more diligent. I’ve spent weeks writing about all the right things I did to get better but realize I have “fallen off the wagon” recently. Life has gotten so busy that I’ve forgotten to really take care of myself. That is about to change.
From the moment I met my boyfriend, Dionisio, I knew he was the one. As cliché as it sounds, he’s everything I’ve ever wanted…and more. Once we introduced our children, we chose to sit back and let things happen naturally. We were very lucky; right from the start our gang “meshed” so well. In no time, without even realizing it, we became a family.
Dionisio and I both always dreamed of having a large family. We found ourselves with four children (all of whom reside with us), yet we were still entertaining the idea of having more. No matter how hectic the days got (and they are hectic!!!) we loved the thought of having a child of our own. When Dr. Jeejeebhoy told me that my heart was back to normal she briefly mentioned the possibility of more children. At the time I was so overwhelmed finding out that I no longer had Heart Disease, I didn’t pursue the matter any further.
Due to the changes in my life, I felt it was time to discuss the feasibility with Dr. Jeejeebhoy. She advised that she still believed my heart was strong enough to sustain a successful pregnancy, providing I was closely monitored by herself and an OB/GYN she works with who specializes in high risk pregnancies. There was certainly the possibility of a relapse; however, she thought the chance was minimal. When I left Dr. Jeejeebhoy’s office I felt like I was floating on a cloud – I was blissfully happy.
As I was driving away I immediately started to have doubts. I was feeling apprehensive but still a little excited. I expressed these feelings to Dionisio, who was feeling the same way. We talked for hours and finally came to a decision; a very tough one at that. We decided that I had been the recipient of an incredible Miracle; that if we chose to have more children we were tempting fate. We weren’t prepared to take any chances when we already had four amazing children.
I have no doubt that I would have been in the best hands possible with Dr. Jeejeebhoy and her associate; however, I have been truly blessed with a wonderful family and given a second chance. I think it would be selfish – unfair to our children – to take any risk, no matter how small it might be.
On October 24, 2007 I attended Dr. Jeejeebhoy’s office for a routine appointment. It proved to be another life changing day.
She informed me that tests showed my heart was back to “normal”; that the Dilated Cardiomyopathy and Congestive Heart Failure were no longer present. My ejection fraction was 56% – the low end of normal. I was stunned. She advised that there was no real scientific explanation – just a combination of medication and age. I cried like a baby that day – tears of relief, joy and apprehension – worried that the results were somehow wrong. It took many days for me to truly appreciate what had taken place.
As would always happen after getting news, good or bad, I went to see Dr. Graham. He confirmed what Dr. Jeejeebhoy had already said. I no longer had Heart Disease. He advised his initial reaction was similar to mine; complete surprise. We both knew that I had been doing remarkably well, but certainly not that well!! We agreed – a Miracle had happened. Once leaving his office I felt more reassured; however, still anxious about sharing the news.
I “chickened” out, to a certain degree, when it came time to tell everyone. I did so, for the most part, via e-mail. I had spent years telling family and friends that with my form of Heart Disease there were just as many questions as answers; that this was “for life”, and here I was about to tell them that I was “cured.” Instead of being ecstatic, I was really worried about the reactions I would receive. Of course those feelings were unjustified – everyone was very happy for me.
I was the recipient of a true Miracle; one which most are not so lucky to receive. All my prayers had been answered. I had spent night after night, day after day, bargaining with God, begging Him to somehow heal my heart – let me finish raising my daughter. That chance was given to me and I realized I needed to enjoy every moment of it. It was then that I began to embrace my “new life”, my life with a much lighter heart…literally.
Five weeks later another Miracle happened (or so my parents would say!!!). I met the man of my dreams.
2007 – one of the best years of my life. By early spring I was feeling so much better. I had lots of energy (comparatively speaking) and felt almost “normal” again. I was able to function most days without a nap. I still ensured that I got plenty of rest but found that I needed substantially less than in the few years prior.
I decided to speak to Dr. Jeejeebhoy about the possibility of taking a trip. I had been advised years before that flying was not an option because of the strain it would put on my already struggling heart. I thought it was worth a try since my ejection fraction (one measure of heart function) had increased from 24% at diagnosis to 51% in the fall of 2006. I had always wanted to take my daughter on a trip but thought there was little chance that dream would become reality. To my surprise, and delight, Dr. Jeejeebhoy gave me the go-ahead.
I was very excited, yet apprehensive, about this new adventure; concerned that if anything happened there would be no one to care for my daughter (and possibly me) so my step-dad decided to join us. I spent weeks researching – trying to find the perfect destination. I wasn’t sure if this would be a one time thing so I wanted to make the best of it. I looked at everything from Florida to cruises but in the end, the trip I chose was Western Canada.
We started in Kelowna, British Columbia, which enabled us to visit our beloved dog whom we had to give up a few years prior and missed dearly. We then drove all through the mountains, visiting places such as Golden, Banff, Drumheller and Okotoks (to see family). We completed our journey in Edmonton, Alberta.
We had a wonderful time. Having my step-dad there made the trip more enjoyable for all of us and gave me great peace of mind. When I needed to rest he would entertain my daughter, which ultimately enabled me to participate in activities that I might not have otherwise. It meant so much to be able to give my daughter such wonderful memories – memories that months before I was certain would never come to fruition.
Little did I know that this trip was just the beginning. More incredible things were about to happen.
