subject: Growing Up With Cystic Fibrosis by Reema Chamseddine [print this page] Growing Up With Cystic Fibrosis Growing Up With Cystic Fibrosis
I often catch myself wondering am I normal or not? Why am I different from those other children? As a young child, growing up was hard, living was hard, but I made it through. Many nights of crying and wondering where will I be tomorrow. Now at 22 years old I am still here, alive and living well. I was born with a genetic disease that many of you may have heard of. It is called Cystic Fibrosis. What is Cystic Fibrosis? Well that is what I will be talking to you about.
Topics I will be covering are:
What is Cystic Fibrosis
How organs are affected
What are the symptoms of CF
Who is usually affected by Cystic Fibrosis and how is it diagnosed
What is the average life span of those who suffer from CF
Treatments being used
What is Cystic Fibrosis?
Cystic Fibrosis is a common genetic disease that affects many organs of the body. The most common organs affected are the lungs, sinus and pancreas. Other organs that are also affected are; liver and gallbladder, intestines, reproductive organs in men and women. Cystic Fibrosis also affects the sweat glands. This means the defective gene interferes with the body's ability to transfer water and salt to and from cells, which means that people who suffer from Cystic Fibrosis usually have thick and sticky secretion. This is not so good since it clogs up many organs of the body. In non-CF people, the secretions are thin and watery, which is normal.
How organs are affect
Respiratory System:
Cystic Fibrosis affects ones breathing and the reason for this is because secretion in the airway becomes thick and blocks the airways, which makes this difficult for most CF patients to breath. Normal secretion in the airway is usually thin which makes it easier for secretion to pass through and be cleared. Because of this reason, lung infections are very common is CF patients. Pseudomonas Aeruginosa (PA) is the most common bacteria that cause lung infections. Sinus problems may also occur due to respiratory infections of CF patients, which mean that CF patients have a higher risk of sinus infections. The reason for sinus infections is due to nasal polys, which are non-cancerous tumours in the lining of the nasal passage. When this happens, usually surgery is required. I have had 18 surgeries in my life due to this reason.
Digestive System:
Cystic Fibrosis affects the digestive system due to lack of enzymes in the pancreas. This means that not enough nutrients can be digested. Patients with CF must take enzymes in order to absorb all the nutrients taken in by food. Lack of enzymes in the body causes many CF patients to be under weight. In CF, many patients lack the digestion of fats and proteins, so when this happens, higher intake of fat and proteins from food are required. Sticky secretion is another issue why people in CF lack digestion because of abnormal thick secretion, this blocks the ducts or passageways to the pancreas preventing healthy digestive juices from entering the intestines, making it almost impossible to digest proteins and fats.
Cystic Fibrosis affects the reproductive system due to the sticky secretion in the sexual organs. For men, this may cause obstruction of the sperm canal. For women, this may cause infertility or a decrease in fertility, yet it is not impossible for a woman with CF to get pregnant. Many women who have cystic fibrosis have successful pregnancies, but they need close monitoring because of their nutritional status and the extra strain on their lungs.
Symptoms of Cystic Fibrosis
There are many symptoms that are associated with CF, but vary from person to person. Below are the lists of symptoms:
chronic cough
coughing up blood
collapsed lung
clubbing (rounding and enlargement of the fingers and toes)
heart enlargement
nasal polyps (fleshy growths in the nose)
sinusitis (inflamed nasal sinuses)
delayed sexual development
absence or stopping of menstruation
irregular menstrual periods
inflammation of the cervix
infertility or sterility
salty tasting skin
bowel obstruction
frequent wheezing or pneumonia
abdominal swelling
vomiting
dehydration
pneumothorax (rupture of lung tissue and trapping of air between the lung and chest wall)
Liver and gallbladder problems
Gassiness
Who is usually affected by Cystic Fibrosis and how it is diagnosed?
Did you know that it is most common for Caucasians to be diagnosed with cystic fibrosis? It is said that 1 out of every 3600 children in Canada are diagnosed with cystic fibrosis. 1 in 25 people are carriers of this gene, which means they do not have CF, but because they carry this gene they can pass it on to their children. (http://www.cysticfibrosis.ca/en/aboutCysticFibrosis/CfStatistics.php#top). It is said that in the United States, Cystic Fibrosis is the number 1 killer among children and adults. Here is something I had found on what happens when two people are a carrier of Cystic Fibrosis.
When two people who carry the CF gene have a child, there is: (http://www.cfedmonton.ca/aboutcf.html)
a 25% chance that the child will be born with cystic fibrosis;
a 50% chance that the child will not have CF, but will be a carrier;
A 25% chance that the child will not have CF, and will not be a carrier.
How is CF diagnosed?
Cystic Fibrosis is diagnosed by performing what is called a "sweat test". In CF, many patients lose salt through sweat, but CF patients tend to lose more salt then a non-CF person. When a sweat test is performed, if high salt level occurs, then the presence of Cystic Fibrosis is there.
What is the average life span of Cystic Fibrosis today?
Today the average life span of Cystic Fibrosis is 30 years old. This has increase a lot in the past decade. In the past, the life expectancy of CF was 18 years old. Now due to the increase in treatments and better medication, people with CF are also living into their 40's.
Treatments used to treat Cystic Fibrosis
Many treatments are used today to treat this fatal disease, such as
Chest physiotherapy
Pancreatic enzyme replacement
Antibiotics
Nutritional therapy
Pulmonary therapy
Just to name a few.
So for those who did not know what Cystic Fibrosis was, now you do. For those who do know what Cystic Fibrosis is, but just never knew how serious it can be, well now you do. So let me talk to you about my experience growing up and living with Cystic Fibrosis.
When I was born on December 15, 1987, I was first diagnosed with CF. Doctors had spoken to my father about this common genetic fatal disease because he did not know much about it. He spent many years with me in the hospital by my side, and many days after going through surgery. One day when I was 2 years old, my grandmother had come in my room screaming and yelling to my father that I wasn't breathing well. My father had rushed me to the hospital where doctors had saved my life. They had told my father if he had waited a bit longer to have brought me in, I would have died. They had to put a tube down my through because my airways had swelled up. My father will never forget the tears my grandmother had cried that day. She was the most important woman in my life. She was like my mother. She had passed away on January 1st, 2001. She was my best friend. May she rest in peace and I hope she knows what an inspiration she was in my life. I love you grandma.
I have spent weeks in the hospital almost every year due to sinus surgeries. I had also required blood because of the amount of blood loss. The reason for this was because of my CF. I suffer from nasal polyps, which are non-cancerous tumours that grow in the lining of the nasal passage. Unfortunately for me, these will never go away and will always re grow even after having surgery to get them removed. I was a pretty small person than the average children. I was very underweight and never had the appetite to eat much, which was another reason for my stay in the hospital. As I was getting older, my appetite was getting better which made me eat a lot. The only problem I have is I could eat so much and barely gain weight. That is why in CF, many patients have a strict diet which contains a very high calorie, high fat and high protein diet. This is also a diet that I need to follow. I also require plenty of fluids, since patients with CF lose a lot of salt through sweat, more than the average person.
In 2001, I had started training in Kung Fu, which changed my health a lot and made my CF better. My pulmonary function tests were great (PFT Test), which is a breathing test that many of us CF patients are required to do. This is done my breathing into a tube that measures the amount of force we can breathe out. My lung functions improved a lot and I was achieving 80's and 90's in percentages. I was very dedicated to my training, and after 9 years I am still alive and training now in kickboxing. Kickboxing can be very intense; especially for a person who suffers from CF. I've had many people ask "how can you do it"? "How can you last a whole hour of intense training"? Well all I can say is its tough, but I made it through every class, and every class had got me feeling much stronger. In 2007 I stopped my training in kungfu and decided to try something different, so I went into jiu jitsu. At the same time I was doing kickboxing, which I have been doing for 3 years now. In 2008 I competed in my first kickboxing competition where I had achieved the bronze medal. I was a little disappointed for not getting first place, but I told myself for someone with my condition 3rd place is not bad. In 2009 I now started training in mixed martial arts while I was also training in jiu jitsu and kickboxing. After a year, I felt like everything was becoming too much on me so I thought about it and told myself well I am more dedicated to kickboxing, so till now I am sticking with just kickboxing. I'm hoping to train harder so that one day and I can compete for my first full contact kickboxing tournament. I have seen many people give up their dreams because they felt that their illness would stop them from achieving their goals and dreams. Well not me. I don't care how tough life can become; I will push myself to the limit.
There is one other thing many of you may not know about, but in CF, due to pancreatic problems that many of us CF patients suffer from, diabetes is becoming a very common illness. This is not type 1 or type 2 diabetes that many of you know about. This diabetes in known as Cystic Fibrosis Related Diabetes (CFRD), because of the lack of insulin the pancreas makes. In 2008 I had experience a funny feeling I had never felt before. I had a hypoglycaemic reaction, which is a low blood sugar level. A week later I was told to come in and take a glucose test where I was diagnosed with diabetes. This was only temporary though. I learned that in Cystic Fibrosis, when a patient has an infection, this can cause a CF patient to have temporary diabetes where sugar levels are higher than normal. The reason for this is because patients are now living longer, and when CF patients live longer our pancreas decreases the amount of insulin our body makes. I am not diabetic anymore, but I am now glucose intolerant, which means I have a greater risk for Cystic Fibrosis Related Diabetes (CFRD). I can tell you it's not easy to live with an illness, I may look great on the outside, but no one can really imagine what I feel on the inside. I try not to let my CF or my pre-diabetes get in the way of my goals and dreams. Although I feel sometimes that I do not have enough time, I try and live each day as if it were my last.
I've spent a few years going through anxiety and depression. It was a tough time for me that it drove me on medication, but the meds helped me a lot. I couldn't drive, shop, pay my bills at the bank, be surrounded by a huge crowd, or even go to school because the only thing that would come to my mind is "is something going to happen to me right now"? I've also been through many emotional abuses, physical abuse, molestation, and have always had others put negative thoughts in my mind. This is a lot for a person to have to go through, especially when they have a fatal disease to look after. I've also had suicidal moments where I felt that life was just not worth living. Going through all that hard and tough times actually made me stronger because I realized life is worth living, and those who tell you you can't do it, it is only because they can't do it! Sad to say even family members were so negative. I was always different from everyone in my family. In fact sometimes I felt like I didn't belong because in my culture marriage and having children was always the most important thing. No one saw the potential that I had of achieving other things. I guess being apart from them for a while got me realizing the things I really want to do in life. I want to see the world. Helping families and children, help the poor, help the sick, help the environment and finish my education. Those are my goals in life and those I hope to achieve some day. To me life is too short, and if you ask me, well nothing is worth stopping you from achieving those dreams.
I knew a girl named Emily Jeanne. She was a friend to all of us at the Cystic Fibrosis clinic. I respect her family a lot. Every year we were invited down to their Go-Karting tract for 5 hours of free GO-Karting. Emily had attended many events and had given many speeches about her life with Cystic Fibrosis. On May 1997, she was selected as the CHEO champ at a telethon championship in Disney World. In June 2004 at the age of 16 she hosted a CHEO telethon. On September 2003, she was asked to be a guest speaker at the CF Gala. Emily enjoyed many things in life, such as modelling, playing sports, travelling and music. Emily had a lot of faith in her, and was a member of the Holy Redeemer Parish. On January 16, 2006, Emily was called in to the hospital for surgery to have her double lung transplant after a long wait of hearing from a donor. March 10, 2006, Emily had returned to the hospital after a post- transplant rejection. Emily was hospitalized over 25 times in the past 16 years and had spent months in the hospital. On November 4, 2007, Emily underwent 12 hours of another double lung transplant. I can tell you that this girl is definitely one strong woman. To me she is a survivor. Sadly, on December 26, 2009, I had received an email from her mother telling me that Emily had just passed away. I will never forget the tears that came down my face. To think that this 22 year old girl, who is the same age as me and both suffer from Cystic Fibrosis, had passed away, yet I am still here living. I learned then how precious life is. This girl is my inspiration and will always to me be remembered as one of the strongest CF survivors I have ever met. Nothing ever stopped her from achieving her goals in life, no matter the hard and rough times she's been through. Rest in peace my sweet Emily. Emily Jeanne 1987-2009
June 20, 2010- My best friend Nina had asked me to attend a volley ball charity: Stroll for Liver. This was a great day. Many others gathered together as a team and helped raised money for this special event. Well, five years ago my best friend Nina lost a dear friend of hers to a rare liver disease she had been diagnosed with. Two weeks later after being diagnosed, she had passed away, may she rest in peace (Trish Nagpal). Nina has always been there for me all these years and as her best friend I will always be there to support her and the people she loves most. We have known each other for almost ten years. She has always been there for me through hard, rough times. I hope she will be there for me till the end, as I will always be there for her. One other person who is very special to me, who will always be my dearest friend, I had met at Stroll for Liver. I would say this guy is who got me inspired to write this article. I am proud of him for everything he does and admire everything he dedicates himself to. He's travelled many countries, many cities, and has helped out a lot with the environment fighting to make it a better place. See I believe the environment has a big impact on everyone's health, and when fighting for the environment you are fighting for better health. He is an amazing writer and has travelled many places giving many speeches. I would say he is the hardest working man I have ever met in my life. I dedicate my life to him, and whether he knows this or not, he is the one who inspires me every day and makes me want to achieve all my dreams in life. My life would not be the same without him and my best friend Nina and I am so lucky to have you both in my life. You are both my angels.
In memory of Emily Jeanne and Nina Wahab
(Nina Wahab was my cousin who had passed away at the age of 9 from Cystic Fibrosis)
Dedicated to
Nina Hedayati and Ben Powless
Growing Up With Cystic Fibrosis by Reema Chamseddine
