Clinic visit

Today was my monthly clinic visit.

Last month I wasn't doing to great,  and my doctor put me on a 2 week course of ciprobay. Which didn't help at all, As you may know I picked up a cold or flu from someone /somewhere this month,  whilst on the antibiotics.

Since then I have been battling,  I am tired all the time,short of breath,  using the oxygen machine, not to mention my headaches and nosebleeds.

I told my doctor today that I am in Pilot mode,  I have the same routine every day,  and even as sick as I am, I do what needs to be done. I battle alot after a day at work,  or even going to the mall exhausts me. I approached the idea of it being time to get a portable oxygen concentrator. So I can carry on with my life as best as possible.

For example,  at my job (which I work part time twice a week when I feel up to it), my boss has started noticing when I need the O2, she points out that my fingers are blue and my breathing is taking strain, of which I am not aware because I'm busy. And to lug that big oxygen cylinder around all the time is exhausting.

I am only at about 2 months out of hospital and I need to be admitted again,  my quality of life is cramping my style,  I now need a good clean up. I'm tired of not having energy.

My doctor also mentioned that she is having a hard time convincing the transplant Team at Milpark that I need a transplant. LOOKS CAN BE DECIVING.  I may look fine on the outside,  but you don't know What's going on inside my body,  my emotions and soul.  So this is another hurdle that needs to be tackled,  to convince Milpark that I do indeed need new lungs.

My doctor put it to them this way: "we had her at the brink of death, and brought her back. Now is the time that we've been waiting and working towards "

We too had a fight with discovery as they refused to pay for my night feeds,  my shakes and my creon. I am on the.highest medical aid, paying R4000 odd month,  and they won't cover all my meds. We have a co-payment of R6500.. It's crazy!!! But luckily,  things are sorted,  my doctor said it's not fair because they have covered other cf patients in the past.

Here are my stats for interest sake.

O2:          89% on room air
Weight:  53.3 (dropped by 200grams)
My Lf:    32 % (up by 3%)

Well as far as I know. This is all the news that I have for you at the moment. :-)

Stay fabulous!!