Fabulous and Fighting CF

Thursday, July 14, 2016

Newsletter No. 4/2016

The Fabulous & Fighting CF Trust

Registration No IT 1010/2012/PMB

Supporter of SACFA

DUM SPIRO SPERO – While I Breathe, I Hope

Dear Family and Friends,

The year is marching on and for a long time I have not been well enough to do much. I last updated you all in March, more than 3 months ago, a quarter of 2016 gone and I cannot even think back to that time. Life became a blur of monotony, sleeping, waking, nibbling and sleeping more.

After I was released from hospital near the end of March I came home to see Zorro and Switch, feeling sad that both Angel and Yash had died the day of my admission. It is still a very raw memory for my mom who witnessed the day’s events and had to deal with those first few days mostly on her own. By the time I returned home Zorro and Switch were best friends and their own longing for the other two horses appeared to be over.

Once home I felt that my 2 weeks in hospital had been a huge waste of time. I felt much the same as on admission, breathing was difficult, energy levels very low, stamina to do anything almost non-existent. I picked up a cold somewhere, which thankfully stayed ‘a cold’. On my mom’s insistence I stayed in bed, dosed myself up and rested so it would not develop further and move to my chest. The nice thing about being in bed was being waited on hand and foot, being brought meals on a tray to my room, snacks at intervals and plenty of fluids. Feeling better sucked as I then had to fend for myself again…haha.

The beginning of May, I went away down the coast for a few days with friends and family. It was nice to get away and we had great fun together. I returned in time to help my mom with Mothers’ day baking orders. I have seen on various CF Fb pages, that cfs are saying we should live by the sea. Due the air being salty it helps. So maybe that is a plan, go to the beach more often.

The rest of the month and up to the beginning of June I kept going with the admin work for my mom and I and our baking business. We do 3 markets in a month at the moment and by August are hoping to have another 2 markets that we attend. We have also started going on a Friday morning to a business park and visiting a few businesses with our baking goodies. Private orders have also been coming in regularly so all in all we are keeping out of mischief and managing to pay some of my bills.

June I was admitted again and I was shocked that my stats had gone down so far. My lung function decreased by 10 percent and on admission was only 20%. My weight also dropped by 8 kg and my doctors were very concerned. Two weeks in hospital and both picked up again but I still need to work on everything overall to stay on the transplant list.

These days I take things very much one day at a time. When I wake up I am grateful for a new day and at the end of the day I am happy I have managed to achieve something in my life. I have to take care of myself for ‘me’ and looking ahead to a future with new lungs, better health and happiness with in my life is my dream and my goal. I can extend my dreams as life goes gets better…. For now my life stays simple and achievable.

I trust you are all well and I want to thank you all again for your support. On the days that I am down and things look bleak I only need to contact any one of you to soon realize that you are what make my life worthwhile. Thank you so much, I am truly appreciative and humbled by your unfailing love.

God bless you always

<3 <3 NiQi <3 <3

The Fabulous and Fighting CF Trust banking details are as follows:

Bank : First National Bank

Account Name : The Fabulous and Fighting CF Trust

Account Number : (ZA) 62371509062

Branch : Midlands Mall

Branch code : 250655

Account Type : Current

Monday, April 11, 2016

Trip to Amanzimtoti

It has been 8 years since I was last at the seaside.

I cannot remember what it feels like to have the course, harsh sand between my toes.
The sea breeze, blowing through my hair, the seagulls dancing in the wind.
The waves crashing on the rocks, greeting the shoreline with blunder and vigor.

Oh what a sight it was to see the sea again, to experience all those wonderful things, they fill you with excitement and a childhood sense of Joy..

Markets and Babies

Hey everyone,

I just wanted to write and tell you a little bit about what's happening at the moment .

SQ CREATIONS is doing so well. My mom and I really are being blessed with not only the wonderful turn outs at the PMB Farmers market, but also side orders for weddings and children's parties.

We were recently asked to do finger food platters for a wedding... what an honour!

The reason my mom and I began SQC is because my fund isn't doing so well at the moment, and we need to do some fund raising. So the majority of the money that we make goes to the fabulous and Fighting CF trust, to help help all my monthly medical bills.

Life is really exciting at the moment, I am going to be an aunt! It is something I have been waiting for, for a really long time. Me not being able to have my own children, being an aunt is the next best thing.

My brother and his girlfriend are expecting Little Liam Seth Lucas any day now. Our whole family is filled with happiness for them.

I really can't wait to meet the little guy.

Well that's all for now folks...

Have a great weekend

Monday, March 21, 2016

Trip to Matatiele

Gauteng, Freestate, Mpumalang, Kwa-Zulu Natal, Eastern Cape all in the span of 2 days.....

If you are wondering why that is, it is because I have just come home from two week IV treatment in Jhb. I have managed to stay out of hospital for 4 months, which I am and my doctors are very proud of.

After 2 weeks of treatment, my lung function only went up by 1%. That's alright I suppose, sometimes admissions don't always yield amazing results.

Anyways, Kyle came up to fetch me on Thursday and we stayed the night with his family. and drove back to KZN on Friday.

On Saturday morning mom and I had a brilliant time at the market, we almost sold out of cupcakes!! Thank you to everybody who has been supporting our business SQ CREATIONS :-)

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.