Sixty Five Roses

Today i am going to go into alot more detail about the life threatening disease that is Cystic Fibrosis.

You have more than likely noticed the words written as the title say Sixty Five Roses. The reason being is that this has become a nickname i suppose you’d say for Cystic Fibrosis.
Children who can’t pronounce Cystic Fibrosis sometimes call it by a much sweeter name, "65 Roses." This disease is anything but sweet.

Cystic Fibrosis.
It is a hereditary disease affecting the lungs, sweat glands, and digestive system. People who have cystic fibrosis have to take medications to help breath and digestive enzymes to aid in digestion. When a child is born and it is suspect that they have cystic fibrosis, they do what is called a sweat test on the baby. If it comes back positive, some other tests are conducted to confirm it.

Some of the symptoms of cystic fibrosis are the following (this is in no way a complete list):
Thick mucus affects mainly the lungs which make it rather difficult to breathe.
In people with CF, water and salt can’t move through the tiny cells easily which makes it dry. The body then produces thick, mucus. The thick mucus then invites many different bacteria’s to make a home in the lungs; causing further inflammation and mucus.
Some of the technical names are staphylococcus, pseudomonas and cepacia. CF patients are then put on a strict regime of antibiotics, vitamins, inflammatory medication, other meds, insulin (possibly), exercise, high-calorie diets, physio, nebulised meds, Intravenous antibiotics etc.
This is then followed up by regular clinic appointments with the full CF team. This includes; consultant, CF nurse, dietician, physio and the odd medical student.

Growth issues.
Most of the time CF people will not grow to be very tall and due to digestive and pancreatic issues, they are usually underweight. Therefore, CF patients are put on a high-calorie diet. However, when even that does nothing extra precautions are issued such as high calorie food supplements. When worst comes to the worst, people with CF are put on overnight feeds.

Clubbing of the fingers and toes.
Clubbing is a thickening of the flesh under the toenails and fingernails. The nail curves downward, similar to the shape of the round part of an upside-down spoon. This happens over years of low oxygen supply to the body. It is commonly found in sufferers of CF and people who have lung or and heart problems.

Treatments Include:

CPT or Chest Physical Therapy (physio).
This can be done in a variety of different ways. There is percussion; which is where another person pats the chest area with a hand that is cupped shape.
PEP Mask; which is a hand held device that measures positive expiratory pressure. You breath into the facemask and as you breathe out a resistance is made therefore, making coughing secretions easier.
Flutter and Acopella; both devices create vibrations as you breathe into them; this then shakes the airways loosening the mucus.

Antibiotics: There are numerous amounts of oral medication that have to be taken. Other methods of administering antibiotics are either nebulised or intravenous.

Lung Transplant: To get on a lung transplant list, the CF patient has to be very ill, but well enough to be able to take on new organs.

Cystic Fibrosis is the disease that just keeps giving here are a few other medical complications some CF patients receive:
*Liver disease
*Nasal Polyps
*Lung collapse (pneumothorax)
*Circulatory failure
*People with Cystic Fibrosis are often unable to have children.

Men and women with cystic fibrosis are often unable to have children because of abnormalities in their reproductive systems. Cystic fibrosis also causes a defect in the vas deferens causing sterility in approximately 98% of males with the disease.

The life expectancy of cystic fibrosis patients has been increasing over the past 40 years. In the 1980s life expectancy of people with cystic fibrosis was 14 years.
10 years back, the life expectancy of a person with cystic fibrosis was around 18 years. Today it is 35 years. The median life expectancy of a newborn with cystic fibrosis has increased from 4 years to 32 years. It has been estimated that there has been more than 10 year increase in the average life expectancy of affected people in North America. Over 90% of the affected infants now survive beyond one year. Studies show that life expectancy of children will exceed 40 years. Life expectancy of individuals with adequate pancreatic function can be more than 50 years.
Although i say that there are the unfortunate few that stop having to fight. They lose the battle with CF and are able to breathe easy watching over their loved ones.
Cystic Fibrosis is unpredictable disease. You never know where it is going to take you.

One thing is for sure, CF is both a curse for the obvious; but it is a hidden blessing.
Once you find that blessing, no matter what life throws at you ... nothing ever knocks you down. You never hit rock bottom.
The hidden blessing is being able to appreciate and fully embrace life and everything/everybody in it.
That is truly an amazing gift.
CF sufferers are some of the strongest people i know.
However, i always remember that there are people suffering worse then me. This keeps me smiling to know i am lucky in the sense that ... my life is great!

Take Care, Sophie xoxo

P.S .... more blogs:
• Grandad Wilf
• Analyzing
• Appreciation
• Jamie.
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