Sunday, May 1, 2016

May... The month of CF awareness

Today marks the first day of Cystic Fibrosis awareness month. Even though I've had a double lung transplant over eight years ago CF still affects me. I have to take digestive enzymes when I eat, because of thick mucus in my pancreas that block the exocrine movement of the digestive enzymes.

I also have CF related diabetes so I need to inject myself when eating carbs. The pancreas contains the islets of Langerhans, which are responsible for making insulin, a hormone that helps regulate blood glucose. Damage of the pancreas can lead to loss of the islet cells, leading to a type of diabetes that is unique to those with the disease. This cystic fibrosis-related diabetes (CFRD) shares characteristics that can be found in type 1 and type 2 diabetics, and is one of the principal non-pulmonary complications of CF (copied a bit of Wikipedia there). The anti-rejection meds I take like Prograf and Prednisone also does not help with this!

Since having the Pseudomonas bug in my lungs again I've also been doing some old CF routines again, like nebulising... luckily without the extra mucus.

However CF is more than just a set of symptoms. Growing up with a very bad life-expectancy changes you. In many ways. Some more than others. Most CF sufferers rebel at some stage (I did), they go through denial (I did), they are fighters (in most aspects of life fortunately or unfortunately). We lose a lot of friends and it kind-of makes you hard and hate this stupid disease. You don't have much sympathy for normal people complaining of a cold and you wish they would stay the hell away from you.

Most of the CF people I know have tattoos.... they mean different things to different people, but my one friend put it very well... she said "My body's been hurt so much and I have so many scars from medical procedures, I made the decision to put a pretty scar on my skin that means something to me". Some CF people don't plan for a future because they get told they won't live to be very old. Then when they exceed their life expectation they feel "lost". On the other hand your get those who does everything full-out because "life is short and time is precious". Also, contrary to what my medical history suggests, I'm still rather scared of needles and HATE having a drip put in.

Adulthood is more complicated, males are sterile and females have reduced fertility.... but deciding to have kids brings with it a whole new set of questions. Keeping a job with frequent hospitalisations is near-impossible (I could never do it with my old lungs). Finding partners, getting married, trying to explain everything you've learnt over the years to a new person. Getting to end-stage CF....

There are a few positives though.... since the advance of the internet, the on-line CF community has become very big. It's amazing, since we're not encouraged to be physically close to other CF sufferers due to the risk of germ transfer, so your on-line friends are often your life-line. You also meet some amazing medical people along the way... who become friends and make hospital stays so much better. Don't have much else to say... hopefully someday they'll find a cure for this.


Attie Howell said...

Hi Alice. Sorry I'm so scarce with comments on FB. I really enjoyed your post. I only have my old lungs and they are getting quite old now. I've had Pseudomonas for over 30 years and it is sometimes a bit of a struggle. At least here in Margate we have clean salty air to breath.I have been blessed with my health. The last time I was in hosp. for my lungs was 1994. Before that, at least 3 times a year from 1983. I stay with my mom(86) and sister(60). Her severely disabled child(30) and a caregiver also stays with us. My sister has diabetes (no CF) but not me. We look after each other. You are very courageous and I love your smile. Please keep on fighting and breathing. The Lord is good and with Him in my life nothing can harm me. Not even a Pseudomonas monster. My life expectancy is forever, for this life is only the beginning. Attie

Crystal said...

Wow, that is so wonderfully worded! I kept nodding and agreeing as I read your post. 32 years old here with CF, 6 years post double lung transplant, and about 13 years with CFRD.

Alice said...

Attie - wow that is amazing!!!THanks for the inspiring message.

Crystal - I'm the same age as you! 9 years with CFRD (but I was probably diagnosed late). Glad you could relate!