Cystic Fibrosis - Another personal account...

Here is another website written by someone with CF. There is a lot of great comments on here. And he has a great attitude.
I like his story of how he learned to swallow a pill. "When I was 5, my mom shoved one down my throat and from then on I could swallow pills". Ha ha ha.


http://frontpage.velocity.net/yanc/

Cystic Fibrosis - A Personal Account...

I came across this website. It's written by an 18 year old in the UK that is living with Cystic Fibrosis (CF). He recounts his experience of living with CF. It's an interesting read. And an interesting insite into someone living with CF.
(I find the tone to be quite self-pittying. Perhaps I'm too optimistic about Jack's prospects but I don't find the tone very helpful. Thoughts?)

www.livingwithcf.co.uk

Surgery Date

Peter first noticed the hernia a week or so after Jack was born. A buldge or lump had formed in his right groin. Our family doctor referred us to a pediatric surgeon for evaluation. Last Tuesday March 20 we met with the pediatric surgeon at the Alberta Children's Hospital. We now have a surgery date - this Thursday March 29. We don't have a time yet - although they have told us that they generally do small babies in the early hours; 7-8am. It's a day surgery and we should be home by the afternoon. Please pray that it goes well.

We also met with the CF clinic team on March 20th. There are no new changes. Please please please - ask us LOTS of questions. Many of the questions you have been asking us - we are also curious about or are things that we have not considered but should. Your questions are helpful to us in our exploration and understanding of what is to come.

Our main man Jack

I thought I would start blogging again to keep friends and family in the loop with the developments regarding Jack's health.

On Monday March 12 our family doctor called and said they wanted to review some blood work regarding Jack and asked if I could come in that very day. We went and they told me that Jack has cystic fibrosis (CF). Cystic Fibrosis? How? Was it a false positive? Don't people only live to 12 years of age with that disease?

WAS IT A FALSE POSITIVE? Very unlikely.

CF is one of the newborn screening tests that they do in the province. The test for CF uses genetics and is 99.9% accurate. A false positive is highly unlikely. But there is always a chance that the test results were mixed up with someone elses. To rule out that possibility they also do a sweat test. People with CF excrete much higher amounts of salt in their sweat. The test is performed in the presence of the parents to rule out a mix up and eliminate the other 0.1% chance that it's not CF.

Both of Jack's tests were positive.

HOW?

Cystic fibrosis is genetic, it requires both parents to carry the mutated gene. So if you’re a carrier and your spouse is too: there is a 25% chance that your baby will be healthy, not a carrier and not have cystic fibrosis; a 50% chance that your baby will be a carrier, but not have cystic fibrosis, and a 25% chance that your baby will have cystic fibrosis.

The fact that Jack has CF tells us that both Peter and I are cariers of the defective CF gene.

WHAT IS IT?

I won't go into a ton of detail about what it is. There is some really good and easy to understand information on the Cystic Fibrosis Canada website: www.cysticfibrosis.ca

HOW LONG ARE PEOPLE LIVING WITH CF?

I have been pleasantly surprised to find out just how far treatment has come. In the 1950's children were lucky to make it to grade school (approx 5 years of age). Today people with CF are living well into their 50's. Research continues and by the time Jack is 50 the new number may be much higher.

WHAT NOW?

We are grateful for early screening. Now we can take measures to optimise Jack's health and keep him as healthy as possible for as long as possible. As opposed to waiting until the child is symptomatic and by then you are treating the disease after damage is already done.

On Wednesday March 14 we met for the first time with the Cystic Fibrosis Clinic Team at the Alberta Children's Hospital. What an amazing group! We are so thankful for them. The team is made up of 3 doctors, 2 nurses, a dietician, a pharmacist, a social worker and a psychologist. They were very helpful in answering our questions.

We will meet with them weekly for the first few months and then 4 times per year or more if we need. They are very involve and it's so nice to know that we will be taking this journey with lots of support.

Symptoms generally present sometime between 6 months and 5 years of age. In the mean time they have started Jack on vitamins and salt supplements as a means to help keep him healthy for as long as possible.

HOW YOU CAN HELP.

Symptoms related to his lung can be avoided by taking measures to prevent infection. Good hand washing, keeping distance from people with colds and avoiding irritants like cigarette smoke. You can help by washing your hands before touching / holding him. And by avoiding or postponing contact with our little family if you are sick.

The 'oral' toddler months are going to be tricky. You can help by us take a little precaution against him putting EVERYTHING in his mouth. It cant all be avoided and we don't want to put him in a bubble. But discouraging the sharing of bottles, cups, soothers and such will help.

Prayer. There is a spectrum of illness with CF, ranging from people with CF that are very sick to people with CF that are rarely sick. Please pray that Jack is on the 'not very sick' end of this spectrum.