Sugars and PEGS....

The last few days I have been quite concerned about NiQi's current state of health and have voiced as much to her.  She doesn't seem to be too worried, although her lack of appetite is something she says she is keeping an eye on.

When she was at clinic 2 weeks ago, her doctor didn't like the look of the skin around her PEG as it has been bleeding quite a bit and is itchy.  She was prescribed a cream to use to help, however when we went to the pharmacy to get it, we were told that the product is no longer available and has in fact been off the market for a couple of years.  Well that didn't help did it and the pharmacist couldn't recommend an alternative either.  NiQi has e-mailed her doctor and is waiting for a response to see what else she can use,  but in the meantime it continues to ooze around her PEG and doesn't look good at all.  It doesn't help either that she is allergic to plaster and even though the wound dressings she places on her stomach around the PEG are not as harsh as ordinary plaster it does have an adverse affect on her skin.  She has been using Bactroban in the interim to see if it will help clear the problem but so far it hasn't.  The terrible thing for her is that she always has to wear two tops, one which sits close to her skin and the other that is fairly loose.  By wearing two tops then the one underneath catches any leaking and oozing through the wound dressing and doesn't usually show through to the second top.  Carrying a spare in her bag though when she goes out is a must, just in case it does happen to show through....certainly not a problem that any of us have to contend with and not something that is much thought about I am sure as we do not live our daily lives having to think about such things.

Another concern I have is that her sugar levels are on the increase....it hasn't been one or two random tests that we are talking about but her daily fasting readings have jumped from averaging 4 in the morning to 10 or 12.  Since 2011, she has had random testing done of her sugar levels as many CF's develop CFRD or Cystic Fibrosis Related Diabetes.  In the past we have joked about this testing, even saying that her doctors seem to be wishing her to develop it, however she suddenly feels that it may be coming a reality and she's not sure if it is so, how it will affect her life in the future.  Since August last year she has been testing her sugar levels randomly as advised by her doctor.  At each clinic her readings are discussed as as yet there has been no cause alarm...that is until up to a week or so ago.  She is now testing every morning as well as at random times to see what they are because they have become elevated and is certain that next month her doctor will place her on insulin.

As for her weight , which is a constant battle for her, she has a general lack of appetite which is more than likely directly linked to her feeling tight and more productive with mucous in her lungs.  She must make a trip to the dietitian in the very near future to collect more shakes, which will end up in a dreaded 'weigh in'....Nagging doesn't help in cases like this and as much as she knows she must up her intake of kilojoules, she just doesn't feel like eating.  I on the other hand, who feels so much concern for her present state of health am the exact opposite, and although I don't necessarily want to or need to be eating, I have no problem and am eating way more than I should...lol  Again she is waiting to hear from her doctor as to whether she can start a short course of Ciprobay which will hopefully help with anything underlying and tide her over until the next clinic visit.

 The best of all this is at least she hasn't had any high fevers...a good sign indeed and one that helps her know that whatever is happening at the moment can't be too serious....