Wednesday, 6 February 2013

To I.V or not to I.V, That is the question....

The thing about CF is you can be in cruise control for quite a while, then a series of unexpected happening can tip you scales, much easier than healthy people. This is what's happening to me this week, it's the end of 6 weeks summer holidays looking after the boys, which has been lovely, but coupled with a heat waves, bushfire smoke and a month of no antibiotic's (being so busy I got a little slack with my Bronchitol), coupled with that extra special time of the month (ladies you know what I'm talking about!) well my body started to get tired. No matter what's happening, never lose your sense of humour!

Very funny man, Dylan Moran talking about his friends who have no kids. Hilarious!


So I thought I'd take the opportunity to share with you what it's like for someone like myself who prefers 'naturelle que possible'. What do I do when my CF needs more attention than normal? First, I had a sputum test cultured as soon as the colour changed and I felt more production. The growth is moderate, fortunately it's been caught before it got out of control. 

Medication wise, I started on Colistin inhaled antibiotic as soon as I started feeling poorly, but it wasn't improving at a satisfactory rate. So added Ciprofloxicin dispite the pseudo being 'resistant', I did this a few days ago and have felt the improvement within a day. Hypertonic saline 2-3 times a day, double Pulmozyme, Bronchitol, Ventolin & atrovent 3 times a day. 

Physiotherapy: I pulled out The Vest, Zen Chi 2 times a day. pep, percussion's, trampolining. I love it, not just for kids! *ha ha, neighbours laugh at me jumping out there, but they should give it a go to be honest, having fun and keeps you fit! (before Kalydeco I couldn't trampoline at all, the impact would hurt my lungs, not anymore!) I dedicate a lot of hours a day to all the above during periods like this.

Naturally: I consolidate my energy. I do what I can manage, doing all the above tires me out a  lot, so doing all my natural treatments is more difficult to fit in whilst looking after me and children. I increase my juices to at least two litres a day. I can't tolerate harsh thing on my tummy due to cipro, so haritaki is temporarily on the wayside. I increase my LGG probiotic, 8 Flax seed oil capsules, take Iron + Vit C. Making colostrum, whey powder yogurt drinks. Cucumin reduced to two capsules a day. 1 teaspoon of bicarbonate soda a day. I try to alkaline my body as much as possible. Cut out meat. Increase vegetables. Take Colloidal silver. Inhaled glutathione. Drink extra filtered water.

I have a CF clinic appointment tomorrow, so we will see what the next step is. I hope to continue to improve, schools back so I have more time to concentrate on getting well... I loathe IV antibiotics (doesn't everyone!!) especially because I am allergic to ALL of them. They desensitise me to them and I have to be attached to a 24 hour drip to keep the levels right. The desensitisation stops welts, but I still have a very druggie achy feeling, particularly in my head. This is the second time since starting Kalydeco I've been close to doing IV antibiotic, but with a little bit more effort I hope to avoid it again, but if I have to do a course I look forward to a clean slate and will focus on detoxing the drugs from my system. I'm curious to see if I could become pseudo free now I'm on Kalydeco! 

One things for sure it's time like these that Kalydeco shines. I would have been admitted last week if it weren't for these two little blue pills... it's given me a chance to fight back properly. It's brilliant! Let's see what tomorrow brings...




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