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| Perry and I outside the Toronto General Hospital |
Toronto Visit/ Update
Whenever you go to the store and buy anything with dairy in it, it usually comes with an expire or best before date. I travelled to Toronto in hopes that the team there would be able to give me my expire date so that I would have an idea of how much time I have left here on this planet, but unfortunately, I forgot they weren’t God and that they were not able to supply that information.
It was a week of so much emotion. I was scared, excited, worried, stressed and anxious all wrapped in one tiny little package. It’s not every day you meet with doctors who will eventually have control over your life. Perry and I tried desperately to make a vacation out of it but the trip was so exhausting emotionally it was hard to enjoy ourselves, but we did manage well. Toronto is a beautiful but extremely busy city; it’s almost as if you are in another world. We were up bright and early on Friday morning to head downtown Toronto to meet with the team at the Toronto General Hospital. The hospital was HUGE! After registration, I headed right up to the 10th floor to get my pulmonary function tests done. This is a test that measures how much of your lungs are actually still working in good order. At this hospital they do a more intense test than in St. John’s, and I was exhausted by the time it was all over thirty minutes later. However I quickly regained momentum when they told me my lung volumes were at 44%. You have to understand that when I was hospitalized in February, I was told upon my discharge that my numbers may increase a little but nothing significant. They were 31% at that time, and you are listed for transplant at 30%. So to be told that they have increased to 44%,14% away from the ‘danger zone’, it’s a pretty emotionally thing to hear. I spent so much time before we left to visit that I only had a limited time left, and now to hear this great news was overwhelming.
After this test, it was up to the 12th floor to get a 6 minute walk test done. This measures just how well you can perform while exercising, and how well you can perform in daily living to help asses my quality of life. Before I even started this test I found out that I gained yet another 5lbs of muscle mass, which in the long run helps my overall health. The walk test was challenging and you have to give it your all. It helps the doctors see your peak performance and can judge how well you are doing. It went well. My numbers were slightly down but very good for someone only using 44% of his lungs.
So now that my preliminary tests were done, it was off to meet Dr. Lianne Singer. She will be my specialist that will work side by side with the surgeons to determine when my transplant will benefit me more than the risks of the surgery will. I am so glad I had a posy of people there with Perry and I for support. My aunt Linda whom we stayed with, my cousin Elise, and a dear friend of ours, Michelle joined us. Dr. Singer is a lovely lady. She’s about early 40’s, slim with a beautiful, calming smile. She entered the room and wanted to meet everyone who was there. I think she was really impressed that I had so many people with me to hear the news and could see just how much support I have in this. It was a small scale perspective of just how many people I have behind me going through this journey. I couldn’t help but feel the presence of so many in that room with me, more than the room would ever be able to hold.
Dr. Singer explained to us that I am a very complicated case. Not only do I have CF, but I have this NTM on top of it all. This type of NTM can cause all kinds of problems. I think she was surprised that I was doing as well as I am. As I mentioned, she’s not God but she was able to give me some idea of a timeframe. To her knowledge I was safe for at least a year, and the maximum time she felt I have is 5 years. However, I have already defied the odds so she couldn’t guarantee that this was the limit. But to her knowledge it would be a year for sure before I would need a transplant. She did make it clear that this is just her best estimate, and that this type of infection cannot be cured and could choose to act up and cause havoc at any time. But right now my numbers have been hovering around 40% since April which is a good sign that it may stay stable for a while.
Then she talked to us a little bit about the surgery and the risks involved. I was told that about 95% of ALL transplant patients make it out of the surgery, and that given my age and physical shape, she had high hopes for me post-transplant. Right now there haven’t been many studies to support long term success of transplant because lung transplant has really improved over the last 10 years. She said that there was a 50% chance of surviving 5 years post-transplant and that most patients only get 5-8 years out of their new lungs before a second transplant may be needed but is highly dangerous and unlikely to occur. That was a little hard to hear, but this statistic is based on the entire transplant society, which means if a 70 year old man gets a transplant and is in not great physical shape and dies after a year, then this is put into this statistic as well. CF patients have the best success rate with transplant she told us and really didn’t see any reason why I couldn’t get 10+ years out of my new lungs.
She was thrilled when we told her that we have started fundraising and she said herself that the financial part of it all tends to bring the most stress to transplant patients, especially when you don’t live in Toronto. The less stress the better she emphasized.
She wants to see me for a follow up in six months, and other than that she just said to keep doing what I am doing because it is obviously working! She shook our hands and wished me with best of luck.
Dr. Singer was able to schedule an appointment with an NTM specialist for Wednesday morning, for us to visit and talk with him and get more information about the particular bug that is growing in my lungs. Unfortunately he did not have all my records in time for the appointment, so we just had a chat about the drugs I was on and he told me that he would talk to my team in St. John’s and advise them on his recommendations and would contact me to let me know his findings. He was a little worried about my liver, but was very pleased to hear that I was handling Biaxin well, which is one of the drugs I am taking that a lot of people have problems with. I am lucky!
Right now my focus is to continue to live my life to the fullest and take care of myself as best as possible. I am looking forward to continuing fundraising and plan events where I can be with the people who mean the most to me. Most of all I am looking forward to planning a wedding, where I will marry the man of my dreams. I give Perry 100% of the credit for my good, stable health, as his love has given me a genuine reason to live and continue to fight this stupid disease! His love is saving my life!
Thank you once again for all your love and support and well wished this past couple weeks. It’s been emotional but the news couldn’t have been better really. Looks like you are all going to have to put up with me for a while yet.
Love your life to the fullest and don’t settle until you find absolute happiness.
You deserve it.
“To enjoy good health, to bring true happiness to one's family, to bring peace to all, one must first discipline and control one's own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”
~ Buddah
Peace and Love,
Jamie Leigh Francis
xo
Whenever you go to the store and buy anything with dairy in it, it usually comes with an expire or best before date. I travelled to Toronto in hopes that the team there would be able to give me my expire date so that I would have an idea of how much time I have left here on this planet, but unfortunately, I forgot they weren’t God and that they were not able to supply that information.
It was a week of so much emotion. I was scared, excited, worried, stressed and anxious all wrapped in one tiny little package. It’s not every day you meet with doctors who will eventually have control over your life. Perry and I tried desperately to make a vacation out of it but the trip was so exhausting emotionally it was hard to enjoy ourselves, but we did manage well. Toronto is a beautiful but extremely busy city; it’s almost as if you are in another world. We were up bright and early on Friday morning to head downtown Toronto to meet with the team at the Toronto General Hospital. The hospital was HUGE! After registration, I headed right up to the 10th floor to get my pulmonary function tests done. This is a test that measures how much of your lungs are actually still working in good order. At this hospital they do a more intense test than in St. John’s, and I was exhausted by the time it was all over thirty minutes later. However I quickly regained momentum when they told me my lung volumes were at 44%. You have to understand that when I was hospitalized in February, I was told upon my discharge that my numbers may increase a little but nothing significant. They were 31% at that time, and you are listed for transplant at 30%. So to be told that they have increased to 44%,14% away from the ‘danger zone’, it’s a pretty emotionally thing to hear. I spent so much time before we left to visit that I only had a limited time left, and now to hear this great news was overwhelming.
After this test, it was up to the 12th floor to get a 6 minute walk test done. This measures just how well you can perform while exercising, and how well you can perform in daily living to help asses my quality of life. Before I even started this test I found out that I gained yet another 5lbs of muscle mass, which in the long run helps my overall health. The walk test was challenging and you have to give it your all. It helps the doctors see your peak performance and can judge how well you are doing. It went well. My numbers were slightly down but very good for someone only using 44% of his lungs.
So now that my preliminary tests were done, it was off to meet Dr. Lianne Singer. She will be my specialist that will work side by side with the surgeons to determine when my transplant will benefit me more than the risks of the surgery will. I am so glad I had a posy of people there with Perry and I for support. My aunt Linda whom we stayed with, my cousin Elise, and a dear friend of ours, Michelle joined us. Dr. Singer is a lovely lady. She’s about early 40’s, slim with a beautiful, calming smile. She entered the room and wanted to meet everyone who was there. I think she was really impressed that I had so many people with me to hear the news and could see just how much support I have in this. It was a small scale perspective of just how many people I have behind me going through this journey. I couldn’t help but feel the presence of so many in that room with me, more than the room would ever be able to hold.
Dr. Singer explained to us that I am a very complicated case. Not only do I have CF, but I have this NTM on top of it all. This type of NTM can cause all kinds of problems. I think she was surprised that I was doing as well as I am. As I mentioned, she’s not God but she was able to give me some idea of a timeframe. To her knowledge I was safe for at least a year, and the maximum time she felt I have is 5 years. However, I have already defied the odds so she couldn’t guarantee that this was the limit. But to her knowledge it would be a year for sure before I would need a transplant. She did make it clear that this is just her best estimate, and that this type of infection cannot be cured and could choose to act up and cause havoc at any time. But right now my numbers have been hovering around 40% since April which is a good sign that it may stay stable for a while.
Then she talked to us a little bit about the surgery and the risks involved. I was told that about 95% of ALL transplant patients make it out of the surgery, and that given my age and physical shape, she had high hopes for me post-transplant. Right now there haven’t been many studies to support long term success of transplant because lung transplant has really improved over the last 10 years. She said that there was a 50% chance of surviving 5 years post-transplant and that most patients only get 5-8 years out of their new lungs before a second transplant may be needed but is highly dangerous and unlikely to occur. That was a little hard to hear, but this statistic is based on the entire transplant society, which means if a 70 year old man gets a transplant and is in not great physical shape and dies after a year, then this is put into this statistic as well. CF patients have the best success rate with transplant she told us and really didn’t see any reason why I couldn’t get 10+ years out of my new lungs.
She was thrilled when we told her that we have started fundraising and she said herself that the financial part of it all tends to bring the most stress to transplant patients, especially when you don’t live in Toronto. The less stress the better she emphasized.
She wants to see me for a follow up in six months, and other than that she just said to keep doing what I am doing because it is obviously working! She shook our hands and wished me with best of luck.
Dr. Singer was able to schedule an appointment with an NTM specialist for Wednesday morning, for us to visit and talk with him and get more information about the particular bug that is growing in my lungs. Unfortunately he did not have all my records in time for the appointment, so we just had a chat about the drugs I was on and he told me that he would talk to my team in St. John’s and advise them on his recommendations and would contact me to let me know his findings. He was a little worried about my liver, but was very pleased to hear that I was handling Biaxin well, which is one of the drugs I am taking that a lot of people have problems with. I am lucky!
Right now my focus is to continue to live my life to the fullest and take care of myself as best as possible. I am looking forward to continuing fundraising and plan events where I can be with the people who mean the most to me. Most of all I am looking forward to planning a wedding, where I will marry the man of my dreams. I give Perry 100% of the credit for my good, stable health, as his love has given me a genuine reason to live and continue to fight this stupid disease! His love is saving my life!
Thank you once again for all your love and support and well wished this past couple weeks. It’s been emotional but the news couldn’t have been better really. Looks like you are all going to have to put up with me for a while yet.
Love your life to the fullest and don’t settle until you find absolute happiness.
You deserve it.
“To enjoy good health, to bring true happiness to one's family, to bring peace to all, one must first discipline and control one's own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”
~ Buddah
Peace and Love,
Jamie Leigh Francis
xo
