What Are the Signs and Symptoms of Cystic Fibrosis?

What Are the Signs and Symptoms of Cystic Fibrosis?

Cystic Fibrosis is a disease of many disguises. The exact symptoms can vary greatly from person to person. The early symptoms of CF are also often very similar to other childhood problems. This can make it difficult to diagnose and as result may go undiagnosed or even misdiagnosed. Here is a list of some common symptoms of CF:- Early symptoms (infancy and early childhood): 15–20 % of children born with CF are diagnosed at birth because they present with an intestinal blockage known as meconium ileus. persistent cough which expels thick mucus; recurrent pneumonia difficulty breathing excessive appetite, with weight loss; bowel disturbances, i.e. fatty / grey coloured stools; extremely salty tasting skin; excessive sweating in a very high salt content small salt crystals forming on the scalp failure to thrive

Cf Awareness 2014

Hey everyone,

as you know it is CF Genes day today, and apart of the raising awareness for CF campaign in August is cf sufferers and doctors having radio, magazine, newspaper and TV interviews.

Well today was my turn, I was the lucky CF to be asked to go onto ann7 (African News Network) with Dr Klugman and speak about cystic Fibrosis.

I won't lie, I was nervous, the whole way to the studio I tried not to think about it, but the more I tried not to, the more I did. At one point I remember asking my mom if she had any Rescue, Lol. But to my disappointment she didn't.

When mom and I arrived we were greeted with a very warm welcome by two lovely people, of which we unfortunately didn't catch the name of.

At about 7:45 am, I was called to have hair and makeup done, but just keep in mind that I have already done makeup as I didn't think id qualify to have hair and makeup done, I thought that is only for the rich and famous movie stars. Lol. The makeup artists was very friendly and didn't do too much to my existing makeup. She just put a matt foundation on (So I didn't glow on tv) along with liquid liner on my eye lids and a pink lip stick.

At 8 am, Myself, my Mom (my Photographer and body guard) along with DR Klugman were taken into "The Studio" , it was surreal, I think we all stopped and said "WOW" in awe of this strange new world. There were lights everywhere, and Tvs running different news stories, not to mention all the people working behind the scenes.

I remember seeing the Anchorman sitting behind this very large desk, that was Illuminated to the point I thought about bringing out my sunglasses. (it was so bright I think you could have seen it from space). We were than called to take our places at this giant desk. 2 gentlemen were waiting for us to attach  our mics. I will admit, that is the moment things got real!

Prior to going on air, the anchorman spoke to us and gave us a run down of what to say and the time limit we had. We had 6 minutes each, but as I later learnt, 6 minutes goes by really quickly.

The whole interview I was running through all the things I was going to say, but when it was my turn, something completely different fell out of my mouth. I didn't even say all the things I wanted say. Before I knew it, time was over :-O

I don't even remember what I spoke about, all I know is that I enjoyed it and hopefully we did CF proud .

Mom and I still had to make our way to clinic. We arrived just after 9 and headed straight to lung function hoping we would catch them, unfortunately after waiting for 15 minutes, nobody let us in. We then proceeded to the lifts, of which only 1 was working. Mom and I waited around for what felt like 20minutes, and after the lift skipped the 5th floor, I had , had enough and we tackled the stairs :-O I nearly died, having to climb up 106 stairs (from the carpark to the 9th floor), I wanted to pass out. And who did I have waiting for me at the top of the stairs? Louis, telling me it's not that bad, what's wrong with me etc. He had a good chuckle, I was so out of breathe that I couldn't talk or even wave hand gestures. Louis mom gave him a smack on my behalf . Lol

I nearly crawled into 496, breathless and weak, however my guardian Angel, Sr Barnard came to my rescue and gave me a good dose of O2 (Oxygen). She's the best :-)

anyways, to cut my story short, my clinic visit went well. I have picked up 1.6 Kgs since June.
My stats are alright, 91% on room air. The bad news is, my Lung function, since I came out of hospital, I have been battling, and at this time of year, I struggle the most. My Lung function has dropped down to 29%. The lowest it has been in 2 years. It has dropped, 6% since I was discharged in June.

I have been put onto a course of Ciprobay to help me get through this time of year.

I have noticed that I am coughing alot more, and I get short of breath quickly. I too have noticed that my appetite has started to decrase. I think it is a good idea that I have this ciprobay as to stop things from getting worse.

Oh, and I got my eflow nebuliser today :-) I am so excited to use it

Other than that, today was a fabulous day, and I would like to thank everyone who has been supporting  me. It means the World to me.

I send you all a dose of Love and Giggles.

Stay Fabulous and Fighting <3

News letter 6

Hi Everyone,

My but doesn’t time fly when you are busy and having fun!!!!  This last month went by in a whirlwind and all I remember is it’s been a very trying time for me.  This being an adult and responsible is such hard work, but I guess we all reach a point where we just have to grow up and show that we can manage with the skills our parents have been knocking into our heads all these years.

My visit to hospital was very good.  Being a patient on the ‘other side’ has its advantages – especially when it comes to the dietary side of things.  I was amazed at the fact that I was actually given a choice at mealtimes, something for me that proved as always to be a bit of a ‘headache’ as I am an indecisive person at the best of times…haha.  Double portions went down well and the fact that I was on cortisone and had an increase in appetite, meant the worms weren’t grumbling as much.  I was in ‘wifi heaven’ with the free wifi which saved my airtime on my phone and gave me an opportunity to update everything on my laptop.  I left hospital after a full two weeks with a new lease on life.  Thank goodness the physio’s there believe in doing percussion on sick patients as I have missed not receiving enough in the last couple of years of admissions.  My weight exploded and again I am a chubby cheeks and not gaunt and haggard as I had become before admission.  My lung function increased to where it was a few months ago and my energy levels made me feel like a little energade bunny going on and on and on…lol.  Whilst I was in I had my ‘work up’ for transplant.  I met the whole team, surgeons, physio, dietician and psychologist.  It is all rather daunting and I suddenly realized how very real this whole thing, if I can call it that, is becoming.   The last couple of years it has been an idea…a dream…and now it may just be real life.  I have so much to learn and I pray that I will be ready when the time comes to accept new challenges that are ahead.

Wow….since then I have sent e-mails back and forth to pharmacies, doctors and medical aids all in an effort to get my medicines and a new nebulizer.  At least I can say with confidence that I have a new nebulizer.  Approval had to be given by the medical aid to purchase it and it has now been paid for and delivered to my doctor, so I will collect it tomorrow when I go to clinic.  Sadly, I have not been so successful on the medication side of things.  Before I left hospital medical aid advised me they would not pay for my chronic meds!!!!!!!!  My doctor had to send through more motivation to them to get approval and the long and the short of it is that I have gone the whole month eeking out what I have and begging from other CF’s to see me through.  Too much drama for me I’m afraid which has left me highly stressed and frustrated.  I am at the point where tomorrow I hope my doctor will give me the original documentation for me to e-mail through as the pharmacy group providing my medicines say the scripts are illegible.

SACFA are promoting CF in South Africa this month having broken the mould from the regular May slot.  They are working together with a company who have experience in publicizing efforts for health disorders.  I am going to do a short interview on ANN television tomorrow which should be live streamed for those who don’t have access to DSTV.  I’m pretty nervous so please pray I will be able to pull it off.  It is also organ donor month this month and I am going to a charity event on Saturday organised by a fellow ‘CFer’ who received new lungs last year.  I am going to take photographs of the event for her as well as speak for a few minutes on what it is like waiting for lungs.  Please keep me in prayer for that too.  I am a very private person and not had any experience in public speaking so this is quite daunting for me.  I guess we all have to start somewhere and this is a first for me.

Being in hospital and with the medical aid now working for me, the bills started rolling in.  Lucky I don’t have to worry about that as the finances of the trust and gap cover pay the shortfall on the accounts.  It has made me realize anew that you are such awesome people for without you and all you have done and still do for the fund, I would not be in the situation that I am right now.  You are the reason I may one day have a lung transplant.  Thank you so much, I cannot express sufficiently what it means to me.

Well I think I have brought you up to date with my life now.  Sorry this is so lengthy to read, the next letter should be shorter.

God bless you always

<3 <3 NiQi <3 <3

Onward and Upward

Today was a big day for me, in fact a very beeeeeeeg day indeed.  It wasn't just that it was clinic day but also the day to talk to my doctor about 'where to now'.  I emailed my medical aid a few days ago to find out whether my exclusion period is over and yesterday I received confirmation that it is.  YAHHHH!!!!!!!  My start date with them was 1st June 2013 and according to their mail, exclusion was over on 3rd June 2014.  When I started the year I thought to myself, how will I ever get through this next year and now here we are and it is over and done with.

So as you know I haven't been feeling great this last month or so.  Having 10 days of Ciprobay help for a bit but I'm still not doing well...sigh...  Going to clinic I was both nervous and excited.  Nervous because I knew my weight would be down again and possibly my lung function, and excited because I feel I am one step closer to getting some new lungs.

So now that I'm officially on medical aid I have to say 'goodbye' to Charlotte Maxeke.  It is amazing that my first appointment to the clinic there, my dad wheeled me in  in a wheelchair, my lung function was 17% and I weighed 45 kg. A year and a half later and I weigh 52 kg, my lung function is 30% and oxygen levels at 85%.  I am blessed...I have made new friends, awesome friends and met the wonderful caring staff of ward 496.  The friends I will keep forever, of that I am sure... It's not quite goodbye for ever as until I am actually listed, I can continue to attend the clinic.  My next IV's are going to be at Milpark Hospital which will hopefully mean admittance on 17th June and while I am in I will meet the transplant team and undergo a whole load of tests.  The team meet once a quarter and apparently have just recently had a meeting, so I will have to wait a couple of months before hearing their decision.

So there we are, the ball is rolling in a new direction and hopefully I will knock their socks off and make that list.

Clinic update - May 2014

So today has been 6 weeks since I was discharged from Hospital, which mean it was my follow up appointment.

Mom and I have now decided that we take the old JHB road to JHB because these e-tolls are ridiculous.  And after our last experience of being in traffic for over 4 hours, we departed from the Hakka (Home), just after 5am, ( which means I was up and awake at 3:45, to be able to get all my nebs done in time before leaving).We arrived in JHB at about 7:30am.

First things first, Lung Function...the dreaded lung function. I wasn't sure about how would do as I have been struggling lately.

When I arrived I wasn't the first person, Michael had beat me to it. So we both sat, waiting and chatted. When we had gone in to do our Lung Functions, Andriesa arrived, and shortly after that Louis decided to grace us with his presence. Smiles, hugs and hellos all round. It was great to have everyone together again, only one person Missing..... Mr Juan West. Jip, late as always. Lol.

We all waited for one another to finish before heading up to the ward. My Lung Functiona, despite me more more chesty and productive is still the same, 31% .

We then all had physio, had to get 3 samples out so they can test the secretions to see if we have picked up any new bugs. It felt like physio went on forever.

Eventually Juan and his dad arrived, so it was a big reunion again.

Andriesa's lung function has dropped slightly, but she does have the flu at the moment.
Michaels and Juan have also dropped by a few percent, but luckily nothing to be too concerned about.
Louis lung function has increased slightly, which is great. I think it's because of the cycling he has been doing.

Weight wise, all of them have picked up a couple of Kgs... Yay for them! But I have lost weight (boo), despite me eating so much and having shakes. My kangaroo (the machine I use to do night feeds) packed up 3 weeks ago, and I haven't been able to get another one. It just shows how dependant I am on the feeds to keep my weight up. I have spoken to the head dietician at JHB and we are trying to organise a new machine and better feeds. She was in shock when I told her that I make up ensure at night. She told me that she NEVER gives ensure for night feeds, she uses other higher calorie feeds that are already mixed. So hopefully I will pick up all the weight that I have lost.

I went in to see my Doctor, it was a quick visit.
My stats are : my O2 levels on room air are 88%, which is down from my 93%, but it's still in the "acceptable" category.
My vitamin A levels are low, so I have been advised to start taking a double dose weekly.

Other than that, I am doing alright. The doctor just said that I must watch myself and if I feel sick enough for admission, I must phone and organise.

It was great seeing my friends again. We are really close, we understand each other and can relate.
I wish them all the best for this next month. I hope all goes well.

My next clinic date is the 4th of June.

Lots of Love

Stay Fabulous! <3