Good news

These past 2 weeks have been amazing.... Firstly, I got engaged to the most amazing man in the world. I couldn't be more blessed. The Lord really sent me someone to cherish.

Secondly, I went onto my email today, and got the best news ever.... I have been officially added onto the Lung Transplant list. :-D

It has been a long time coming, and I have worked really hard to get where I am today. It is daunting, and I am scared as hek, but all will happen when it is meant to, and I am ready! 

Thank you for everyones love and support. 

My Life is heading in the right direction.

(Click on the image to make it bigger)

What I Have been up to

Last week Thursday I was allowed to go home, on IVS of course.

I am now on day 19 of my 21 day course, and I must say I cannot wait for it to end. This has been one of my longest admissions in a while, and I have worked so hard to keep myself healthy. Physio 3 times a day, nebbing 3 times a day with 4 different type of medications. And then not to mention the eating, I am eating my mom out of house and home. Ha-ha.

I can’t wait for the steroids to be stopped so I can see how much weight I have actually picked up. My goal weight for transplant is still 63kgs…. At the moment, (on steroids) I am 6kgs away from my goal weight. *Jippie* I now have to start turning all of that into muscle. This means it’s time to start the dreaded exercising process. Wish me luck.

So for the last week, I have had to keep myself busy, but not too busy, I still have to rest and take it easy.

#CFBLOWS 24 Hour Challenge

As with the ALS bucket challenge, a guy of the name Damian Wolf (a guy in Capetown) started the #CFBLOW Challenge in South Africa. It took someone with real guts to do this.

I have been racking my brain for months trying to think of something to do, and now we have something. (Big Ups to Damian) 

So South Africa I hope you are ready to blow your lungs out and raise awareness for Cystic Fibrosis, not just in South Africa, But Around the world!!

"What if"

You  may have seen my post on my facebook group about speaking to my doctor about the "what if" with transplant.

Today the transplant Psychologist came to see me, just to find out how things are going. And how I am doing, and am I coping.

I told her about my thoughts and concerns about having the transplant now. I know that it is something that needs to be done, and I have been working towards it. But what if I can keep myself healthy like I am now, and prolong my life before transplant. Most transplant patients have a span of 5 years before they start rejecting. It is a scary thought, that I may only live 5 more years. It is something that I have to come to terms with.

"Dum Spiro Spero" Concert

Hey everyone,

I can't believe that it has been a year already since we had the DUM SPIRO SPERO concert down in PMB.

I am still in search of the photos from that evening. But as soon as I have them, I will let you know.

Admission

It is settled then, I am being admitted next week.  

I don't know whether to be excited or not. Admission is never an exciting time,  being on your own, leaving your friends and family. 2 weeks, 14 days may not sound like a.long time,  but trust me it is.

The endless xrays,  and scans, lung functions and physio is exhausting. Not to mention the boredom,  now that's what exhausts you.

Flu shot

I came across these photos my mom took in March.

I was having my flu shot done. Quite a painful little injection.

At the same time I was having my Port flushed. It has to be flushed with Heparin (a blood thinning agent) to stop the port from blocking.

This happens every month at clinic. And twice at admission,  once when the port needle (a butterfly needle)  is put in, and once more before the needle comes out.

The costs start rolling in

I got this sms today,  despite being on top medical Aid, they still don't pay for everything. This is why I started my fund, because costs like these will start to roll in.

And people who say they haven't had problems with medical aid, are either oblivious,  have too much money,  or are very lucky.

Organ donation

Scary statistics...

Clinic visit

Today was my monthly clinic visit.

Last month I wasn't doing to great,  and my doctor put me on a 2 week course of ciprobay. Which didn't help at all, As you may know I picked up a cold or flu from someone /somewhere this month,  whilst on the antibiotics.

Since then I have been battling,  I am tired all the time,short of breath,  using the oxygen machine, not to mention my headaches and nosebleeds.

ChariTea Speech

So, here is the Speech I gave at the Event

Charitea Event

Charitea

                                           

Nearly 3 weeks ago, I attended the Charitea event organised by Fawn Rogers. It was an event to raise awareness about Organ donation.

94.7 cycle challenge

Please support this year, and ride for Cystic Fibrosis

Hi everyone, we have a team in for 94.7. Join us and cycle for rare diseases. We have a specific group for pulmonary conditions. Email info@rarediseases.co.za would love to represent CF too.

Who to contact

Who to contact if you suspect Cystic Fibrosis

What is Cystic Fibrosis

What Causes Cystic Fibrosis?

People are born with Cystic Fibrosis; it is a genetic disorder. CF is caused by a mutation in a gene called the cystic fibrosis transmembrane conductance regulator (CFTR) which helps create sweat, digestive juices, and mucus. Although most people without CF have two working copies of the CFTR gene, only one gene is needed to prevent cystic fibrosis. CF develops when neither gene works normally. The CFTR gene is therefore a recessive gene and, because both men and women can develop cystic fibrosis, CF is known as an autosomal recessive disease. The name cystic fibrosis comes from the characteristic scarring (fibrosis) and cyst formation within the pancreas, first recognized in the 1930s. When two people who carry a defective version of the gene responsible for CF have a child, there is:

How Cystic Fibrosis is Diagnosed

The sweat test remains the most important and frequently used clinical test for the diagnosis of Cystic Fibrosis in South Africa. What is a sweat test? CF affects the exocrine glands. The sweat gland is a type of exocrine gland. CF causes an abnormal amount of salt to be lost in the sweat. The basis of the test is measuring the salt content in the sweat. If the child has CF, the analysis will show a high salt (sodium and chloride) level. This is a simple, painless and inexpensive test. However to be accurate it must be performed and interpreted correctly.

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

Time spent with my Children

It is when I have recently come home from hospital and I am feeling at my best for a while that I get to spend the most time with my children. They bring me so much joy and I am at my happiest when I am able to work with them or do new things with them that I may not have been able to do in a while.

It doesn't matter how much I may enjoy being with them, grooming them, working them and riding them, there is no way I can adequately describe what it feels like not to have the energy or the inclination to be around them when I am not well.  Trying to saddle up a horse correctly takes so much energy that I am then too tired to even have a leg up to get on and take a ride.  So while I can and am able I use the opportunity to my advantage.

Today I managed to spend time with Switch who is still carrying a lot of pregnancy weight.  She was very good and let me do so much with her.  I measured her to see how much she weighs now...she is 380 kg and she is our tallest horse at 15 hands.  I managed to put the halter on her, and then the numnah and saddle too.  She looks so fat and yet the area that the saddle is strapped around her with the girth is quite small.  I used Zorro's saddle today and I was able to tighten it a lot smaller on her than on him.  All the while she just stood obediently and let me work with her.  To hoist myself on top of her I needed to use a step,well not a step, but an old car tyre, but she didn't mind.  To sit on her was the best feeling I have had in a while.  I felt so tall and all the while she just kept her stance.  We walked a bit around the ring but not a lot.  It is the first time since she has been with us that I have done this as we first had to let her get used to us and then with her being pregnant we decided to rather earn her trust than work her.

After lunch I spent time with Angel, my dad's horse. I didn't use a saddle as I was too lazy to go and fetch it. I just sat on a numnah.  She too was very good and I had a nice little trot with her around the ring.  She has picked up quite a bit of weight over summer with too much delicious grazing to eat so she really needs us to ride her more often.

I am going to try my best to be with the horses every day this week...it doesn't just help them but it helps me too.  How lucky am I!!!!

Home

At last I am home again with all that is familiar around me.

To finally make that bend in the road and turn up our driveway gives me an exciting feeling of expectancy.

We arrived home late yesterday afternoon and to first have Barney, my dog jumping up and down with excitement and then walk up to see Zorro and August waiting for their afternoon snack, made me realise just how much I miss being home.
When in hospital it is nice to have friends with me who can relate to me and all I go through on a daily basis, as well as having totally awesome staff who go above and beyond their duties for us...just because they can and care, but I do miss home.

I am disappointed that this stay didn't produce the 'oomph' that I was hoping for but at least I'm not worse than when I went in.

My PEG was looked at and it was decided to leave it as is and not fit a new one. The doctor said to me that for it having been in for almost 2 years it is in really good condition still so there was no need to replace it.  She gave me some good tips on keeping it in good working order so I am grateful for all her advise.

My sugar readings were absolutely fine with the feeds the hospital dietitians gave me so their was no reason to start me on insulin. To be honest I am glad as I don't really want CFRD to develop at this stage of my life.  I will continue to do random testing though as I know it is important at my age to keep an eye on things.
The dreaded lung function test on release is 33%...still good compared to what it was.  Sadly I only picked up 400g, which means my weight is now 54.8kg...also better than before but not moving up quickly enough.

Today I cleaned up in my flat, a job that does not hold any enthusiasm for me but it had to be done. Even with it being closed up and no one using it, the dust bkew in under the doors and made everything dirty.
So with suitcases unpacked and clothes away, for once, I am ready for tomorrow and looking forward to our holiday next month.

Two Weeks

Hey there all you friendies, family and fans :-)

Well guess what? Two weeks is up and this morning I woke up feeling 'meh'. I can't believe that at the time I should be packing my bags and going home, I feel this way. It took a whole week of treatment before I started to feel any improvement and now this.  My doctor said they will see how I am feeling on Wednesday and then decide if they are going to release me or not.

Maybe it's a good thing as my PEG hasn't been sorted out yet either. I and my doctor have been trying to have it looked at and replaced and only today did she get hold of anyone who had anything positive to say. Wednesday it will be looked at and measured - just in case I need a different size. It will then take anything from a week to 3 months I believe. A big time frame but I guess if there isn't one available in my size then it will have to be ordered.

Strangely my sugars have been fine here in hospital. The feed I have here is different to the one I am given to use at home so maybe it is that particular product. When I am back home we will test it and see what happens.

So hey, this is how the last two weeks have been for me...some highlights and some lowlights just making life fabulous so I can keep on fighting.

Here are A few pictures of my stay with all my Best Friends :-D

Michael, Juan, Andriesa, Ndu and Louis <3