News Letter 2/2016

The Fabulous & Fighting

CF Trust

Registration No IT 1010/2012/PMB

Supporter of SACFA

DUM SPIRO SPERO – While I Breathe, I Hope

Newsletter No. 2/2016

Dear Family and Friends,

I write to you today from Milpark Hospital in Johannesburg, having been admitted on Wednesday of this week.

It has been slightly longer than usual since my last clinic visit and admission, and the decision to lengthen the spacing has been made for a number of reasons.

Instead of travelling up to clinic once a month, we are going to try and stretch the timing to once every 6 weeks to a) cut down on personal expenses and b) save on medical aid claims. On discussion this week with one of my doctors, it has also been decided to cut back on my admissions as much as possible without my health being unduly affected.

Recent test results show that I have CRE (Carbapenem-Resistant Enterobacteriaceae) as well as my usual pseudomonas strains which complicate my wellness a bit further.

As my doctor explained to me, I have been resistant to antibiotic treatment for many years now so this is not entirely new in factoring my treatment base. I am still managing to obtain a feeling of ‘wellness’ after being given IV courses of Colimycin (Colistin), which I also have in my nebulizer daily as a maintenance medication when at home. This is always given together with another antibiotic so that maximum effect can be achieved.

At the moment I am having Tazibax and Colistin as Intra Venous antibiotics and Augmentin orally. With each admission in the past year, the doctors have had to be very careful to check my sensitivities to antibiotics and initially slowly administer them to make 100% sure I am not allergic to them. Sensitivity and allergy do not necessarily go hand in hand….results to testing the ‘bugs’ in my system may show that I am sensitive to a particular treatment if given, ie: I can use it and it should ‘help’ in treating them, however allergies can only be confirmed once administered. If I have an allergic reaction of swelling, itchiness or constriction in my breathing, like I did with my last admission and the use of Fortum, then the antibiotic has to be stopped.

In other words, I was sensitive to Fortum but allergic at the same time….if that makes any sense to you. Being resistant to antibiotics is a completely different matter however, as it means that no matter how high a dosage I am given, it will make no difference what so ever as the bugs have become immune to them and resist any ‘good’ they may be able to do. I have, as mentioned before, become resistant to all antibiotics at present, so now having CRE is just another challenge for my system and a complication for my doctors. CRE for a ‘normal’ healthy individual is not of any concern, it is only a concern to those whose immune system is impaired due to ill health.

I am in an isolation ward and the staff are to be more meticulous when coming into my room and again when leaving so that they do not infect any other patients on the ward, but I may have visitors….please just remember to wear a mask when coming in if not feeling 100% yourself. My saturation levels are a bit low at the moment if I am not using oxygen and today when tested without breathing in aided oxygen, they were 76% but once ‘hooked up’ to the free flow oxygen they went right back up to 95%.

Finally I have been able to do my night feeds on a regular basis after medical aid relented and said they would pay for them so my weight is now just below 57kg. Good – yes but not good enough to satisfy my doctors who are determined that my BMI should be at a minimum of 20. I am almost there and am trying very hard but it is a long slow journey. My lung function is stable and seems to have hit a plateau which is good in that it has not decreased.

So that is my health update and now for the rest which will be very quick and very low key….

Before I came to hospital my aunt treated me to a new ‘hair do’….colour and cut, which has done oodles for my self-esteem. (Note photo at top of newsletter)

Finally, the day I was admitted to hospital, we lost two of our horse children. Both on the same day and it appears, totally unrelated incidents, but nonetheless devastating to us all. Angel developed colic and even though the vet was delayed in going out to us, by the time he did arrive it was too late for her so she had to be euthanized. She was, as my mom told me, in huge amounts of pain and very uncomfortable, so it was the kindest thing to do. Yash, my baby who we all loved immensely, suddenly developed blindness and in a freak accident of not knowing where he was going, crashed through all the fences and fell down the bank leading to the back of our house. He hurt himself in the process and the shock killed him. It is still raw in my heart and I don’t know how I will feel when I get back home, but for now I am coming to terms with them both dying.