So, my CF
has generally been very well managed. I haven’t really had what we would
consider “problems” until recently.
As I mentioned in my opening blog, CF patients struggle to clear thick mucus from their lungs, which causes a lot of problems, mostly infections. There are two basic types of CF; Pseudomonas and B Sapatia. The latter of which is the more serious strand of CF. I have Pseudomonas.
But recently, my lungs have been growing another type of ‘bug’. It’s called an NTM (Non-Tuberculent micro bacteria) It is not CF related at all. Anyone can get this but it is extremely rare. So rare that the CF clinic I attend, I am their first patient who has ever had this micro-bacteria.
So, because I have CF, it makes this harder to treat. My recent hospitalization was from February 19th to the middle of April. 61 days in total I spent at the HSC. There I received several antibiotics until they found the right mix of drugs that could treat this infection effectively.
At first the drugs seemed to be doing the trick. So much so that they were willing to set up a way that I could go home and be treated, rather than stay in the hospital and risk further exposure to different bugs. So almost right away, my symptoms I was experiencing like, fever and coughing up blood stopped. I started to re-gain weight and all signs pointed to getting better.
Unfortunately at my check-up on Friday, we discovered that though my treatment is working to keep control of the symptoms, it isn’t actually causing me to get better. In fact, my lungs have gotten worse.
When you have CF, we receive a test called a Pulmonary Function Test, or a PFT, to determine how are lungs are functioning. One of the levels doctors keep track of is the FEV1. The FEV1 measures closely the amount or the percentage of your lungs that is operating properly. So basically if your FEV1 is 75, then it’s accurate to say that 75% of your lungs are working the way they should.
For most of my life, my FEV1 has hovered around the 70’s. Even right up until the past couple of years have they shown any sign of falling. However, with this recent bug, my lungs have dropped dramatically. My FEV1 when I was discharged from the hospital in the mid April was 38. So again, pretty much 38% of my lungs are operating the way they should.
This past Friday, that number has decreased again to 31%.
So because this number is getting so low, my CF Team here in Newfoundland has decided it is now time for me to consider getting a lung transplant. Even though the transplant team in Toronto does not put you on a list until you are at an FEV1 of 25, it is important that you start the necessary steps that will lead me to that point. Obviously, they want me to be ready for when that time comes.
In all reality, I could possibly stay at an FEV1 of around 30 for quite some time. A lot of CF patients fall fast but then plateau at a certain area. However, my Team does not want me to take that chance. Rather, it is best to be prepared that to not be. So, my family and I will soon meet with the Transplant Team via web conference where they will conduct an interview to decide if I will be a good candidate for this type of operation.
It is very hard at my age to have to be faced with this type of decision, however, I have been facing death since I was 12 years old. I guess that is why I’m taking it so well. At first I was scared and angry, now my attitude is that I am possibly being offered a second chance at life. A brand new set of lungs. Being able to run for the first time. Being able to sing to the “top of my lungs”. Being able to dance without getting out of breath. Being able to cough without any pain. It is kind of magical when you think about it. And I have so much to live for….. my baby nephew Damon James, named after me, who is now almost 2 years old. I have a loving family who want nothing more than to see me ‘breath’ a little easier. Two beautiful sisters who give me so much joy, Kayla and Laura. I have a new found love of life, now that I am living the life I know I was born to live. And in that new life I have an amazing man, Perry, who shows me nothing but love and has given me a new reason to fight. I have this beautiful earth that God has given us to enjoy that I am not yet finished exploring. I could go on and on, truly, about what I have to live for, which is why I have decided……..
That if I am offered the opportunity to get a lung transplant, I’m going to take it! It’s a YES!
That’s all I have for now, but I will post again soon. I just wanted to inform you all that you are going to have to put up with more for many more years to come!
My wish is that you all treasure the simple things in life, things you may take for granted. Because others may not be so fortunate to enjoy life’s little blessings.
“Every man dies. But not every man lives.” ~ William Wallace
Jamie Leigh Fransis
As I mentioned in my opening blog, CF patients struggle to clear thick mucus from their lungs, which causes a lot of problems, mostly infections. There are two basic types of CF; Pseudomonas and B Sapatia. The latter of which is the more serious strand of CF. I have Pseudomonas.
But recently, my lungs have been growing another type of ‘bug’. It’s called an NTM (Non-Tuberculent micro bacteria) It is not CF related at all. Anyone can get this but it is extremely rare. So rare that the CF clinic I attend, I am their first patient who has ever had this micro-bacteria.
So, because I have CF, it makes this harder to treat. My recent hospitalization was from February 19th to the middle of April. 61 days in total I spent at the HSC. There I received several antibiotics until they found the right mix of drugs that could treat this infection effectively.
At first the drugs seemed to be doing the trick. So much so that they were willing to set up a way that I could go home and be treated, rather than stay in the hospital and risk further exposure to different bugs. So almost right away, my symptoms I was experiencing like, fever and coughing up blood stopped. I started to re-gain weight and all signs pointed to getting better.
Unfortunately at my check-up on Friday, we discovered that though my treatment is working to keep control of the symptoms, it isn’t actually causing me to get better. In fact, my lungs have gotten worse.
When you have CF, we receive a test called a Pulmonary Function Test, or a PFT, to determine how are lungs are functioning. One of the levels doctors keep track of is the FEV1. The FEV1 measures closely the amount or the percentage of your lungs that is operating properly. So basically if your FEV1 is 75, then it’s accurate to say that 75% of your lungs are working the way they should.
For most of my life, my FEV1 has hovered around the 70’s. Even right up until the past couple of years have they shown any sign of falling. However, with this recent bug, my lungs have dropped dramatically. My FEV1 when I was discharged from the hospital in the mid April was 38. So again, pretty much 38% of my lungs are operating the way they should.
This past Friday, that number has decreased again to 31%.
So because this number is getting so low, my CF Team here in Newfoundland has decided it is now time for me to consider getting a lung transplant. Even though the transplant team in Toronto does not put you on a list until you are at an FEV1 of 25, it is important that you start the necessary steps that will lead me to that point. Obviously, they want me to be ready for when that time comes.
In all reality, I could possibly stay at an FEV1 of around 30 for quite some time. A lot of CF patients fall fast but then plateau at a certain area. However, my Team does not want me to take that chance. Rather, it is best to be prepared that to not be. So, my family and I will soon meet with the Transplant Team via web conference where they will conduct an interview to decide if I will be a good candidate for this type of operation.
It is very hard at my age to have to be faced with this type of decision, however, I have been facing death since I was 12 years old. I guess that is why I’m taking it so well. At first I was scared and angry, now my attitude is that I am possibly being offered a second chance at life. A brand new set of lungs. Being able to run for the first time. Being able to sing to the “top of my lungs”. Being able to dance without getting out of breath. Being able to cough without any pain. It is kind of magical when you think about it. And I have so much to live for….. my baby nephew Damon James, named after me, who is now almost 2 years old. I have a loving family who want nothing more than to see me ‘breath’ a little easier. Two beautiful sisters who give me so much joy, Kayla and Laura. I have a new found love of life, now that I am living the life I know I was born to live. And in that new life I have an amazing man, Perry, who shows me nothing but love and has given me a new reason to fight. I have this beautiful earth that God has given us to enjoy that I am not yet finished exploring. I could go on and on, truly, about what I have to live for, which is why I have decided……..
That if I am offered the opportunity to get a lung transplant, I’m going to take it! It’s a YES!
That’s all I have for now, but I will post again soon. I just wanted to inform you all that you are going to have to put up with more for many more years to come!
My wish is that you all treasure the simple things in life, things you may take for granted. Because others may not be so fortunate to enjoy life’s little blessings.
“Every man dies. But not every man lives.” ~ William Wallace
Jamie Leigh Fransis
