My Addmittance

So I was admitted to hospital for my two week treatment. I have now been home for about 2 months.

All kitted out to walk around the Hospital

The first couple of days were fairly boring as I didn’t have much company but it soon became busy in the ward with the admission of 4 other CF’s too. Being at Charlotte Maxeke clinic I am meeting so many more CF’s and they are all adults which is great because finally I have discovered that there are other people who go through the same emotions as I do, worry about the same things, battle through the same things and mostly are as ‘normal’ as I am. We spent late nights congregating in the nurses’ station, playing cards, drinking coffee and chatting about our everyday lives.

Gippie

We spoke about things such as our common Medications and how they make us feel, All our weird habits and how we live our day to day lives. ( Being more gassy than normal people), It was a huge laugh to hear about all our indiscretions. I am soooo relieved to know that I am not the only one who can let go such a vile wind that people have to evacuate the room. Lol. As embarrassing as this all may be, it is the truth, and it is nice to share that with other people.

Gippie and Willem

Another topic which Charlene, Willem , Marlu, Gippie and Myself got quite stuck into was Lung Transplantation. Listening to their views and opinions made me think, what makes each person different? How can we all have the same disease and lives such Similar lives, yet we all have and want different outcomes? It baffles me.

The night of our great discussion, time seem to fly by, one minute it was 10pm, the next, it was 3am, we made a joint (but very foolish) decision to stay up till 6am, as we all had to put on our next round of drips. We had it all planned out, we clean the office and erase ANY evidence of that nights escapades by 5:45am, we would then innocently meander to our bedroom, close the doors, and SLEEP for the rest of the day. HA!!!! Boy was I wrong, at 7 am, our lives become hell and we were officially in the FurLOngers Prison of War Camp 496.

“GET UP GET UP, OPEN THOSE CURTAINS, MAKE YOUR BEDS AND SIT IN YOUR CHAIRS”; was the order being thrown around by Drill Sergeant Furlonger. .. Yes, we had been busted! Our punishment was now to remain awake ALL DAY LONG, and we were not allowed near our beds. Willem and myself were so desperate that we were willing to sleep in the bath! Oh how we were regretting that decision to stay wake till 6am. To make matters worse, we still had to do Physio, and we had students which meant they were going to make us do EXERCISE… (GASP!) Barely making it through the day, we acted all chipper around the staff, just to show them we are strong. That night, by 7 pm we were all ready for bed. Well, most of us. I say most because, during the course of the day, Charlene and I went down to the Cafeteria in a Zombie like state, searching for sustenance. We found our source in 2 sachets of Turbovite, 4 cups of coffee, cans of coke and A LOT of sweets. You guessed it, I had Overdosed on Caffeine, and I couldn’t fall asleep, my heart was racing, I had palpitations, I was hot, annoyed, my hands were shaking, and I kept tossing and turning. L With copious amounts of water to flush all the caffeine out of my system, I was finally able to fall asleep at about midnight. As fun as that experience was, I do not think that I will be wanting to relive that again.

Marlu and Myself

I left the ward 2 weeks later, sadly not as well as I had hoped. November last year was a milestone for me in improvement and I hoped that I would come home feeling the same way. The fact that I have resistance to so many anti-biotics and that I now have 2 different pseudomonas cultures present in my lungs, is making treatment more difficult for my doctors. I came home with a 2 week course of Ciprobay to help and hopefully alleviate the shortness of breath I have at present. The course has been completed and I still do not feel any better. That being said, strangely my stats improved slightly again and my lung function on release was 33%. The X-Rays look better and are not showing as many patches throughout my lungs as they have done in the last few years. My weight is not doing as well though and I have lost a few kg….eeek – not a good sign!!!!

The trust fund is looking good and slowly increasing. I have to thank my great aunt in the UK who has spent many hours making bottled jams etc and selling them in aid of the fund, as well as holding a raffle. Pounds converted to Rands, makes for a tidy little conversion and over R6000 has so far been banked for me. I am so blessed to have so many people, interested in me and concerned for my well-being. My mum is trying to get a team together to ride in the 94.7 radio cycle challenge, which will be held in November this year. And my mum’s friend is organising a concert with the Pietermaritzburg Orchestra of which she is a part. We are also planning to make beaded bracelets, bookmarks and keyrings to help boost the fund. May 29^th is the SACF Association ‘Genes’ day….I’m giving you all fair warning to wear your jeans and something purple on that day. I am planning to make another slideshow as I did last year, but BIGGER and BETTER!!!!!……………….so take photos, short videos, of you and your family and friends dressed up on that day, send them through to me, and I will make them into a compilation of fun and frolic in support of CF.

I hope you all enjoyed my post.

NiQi, Fabulous and Fighting always <3

P.S. We wore Masks :-) Just hid them for Photos