Low weight = Low BMI = NO TRANSPLANT!

On the 11 November 2015 I will have been on the transplant list for a year. A whole year has gone by, and to think that when the transplant panel first discussed my case, they thought that it was too early for me to be listed, because I still have a good quality of life. It just goes to show you how things can change.

It is now that time of year, where the panel have a sit down , and reassess me, and decide to transplant or not. 

When I was first listed, my Lung function was sitting at about 34% and my weight was sitting at around about 59 kgs. 

My 25th

As you may all know, I have recently turned 25 years old, a quarter of a century.

Now, I would like to think that is a milestone, especially having CF, and being told that at birth your prognosis was 21 years.

I have the most amazing family ad friends anyone could ever ask for. Let me tell you why.

I went up to Pretoria on the 16th Of this Month for Clinic.

Clinic went well, my lung function is still sitting at 27, my weight is at 55.7kgs. Dr Baird is happy where I am, but next month, we think that admission will be in order.

Both my mom and my dad came with and they stayed with my cousin Bernadette and Her fiance Brett, whilst I stayed with Kyle and his family.

That time of Year

Good day everybody

It is that time of year, where I ask you all for your inputs on Fund-raising ideas.

Medical costs this past year have been high, and my fund isn't looking so great...

So, I am asking,

does anyone have, or would like to run with any fantastic fund raisers?

Lots of Love always

Relocation update

hi everyone

I am sorry for being so quiet, but as you know, our family was relocating back to KZN.

As of last night, 9:30 pm, I was officially back in my home town, safe and sound.

My mom and dad arrived this morning, along with the moving truck. I am yet to go to my house as I am staying with my aunt at the moment, but we are going to Willow Lane later today. nI am very excited.

It is strange to be back,I can't quite tell if I am excited or not, I just don't think that the reality of it all has hit me yet. I feel like I have a little gift wrapped inside of me, that is just bursting at the seams. I think that is my excitement.

 

 

As for my heatlh, I woke up with no coughing Fit or any headache, of which I have had continually for the past months in Pretoria.

Colimycine

With all this hype about the Orkambi that is apparently a "Cure"for delta F508 mutations, it got me thinking about Colistin.

This is a section 21 medication that I am on, it is my "LAST RESORT".

This medication was made in France and is yet to be approved in South Africa, 10 years after the clinical trials started.

What A Patient has to go through to get this drug is nightmarish. It is more of a headache than someone hitting you over the head with a frying Pan. And yet, what do we "last resort"patients do without it? What options do we have when we are resistant to every other drug available?

Saturday spoils

So it is now day 3 in hospital, it is the weekend, so it is rather quite and lonely, not that I mind.

I knew that Kyle was coming through to visit me, so I was ecstatic, as I haven't seen him in a while.

We had a lovely day together, we had some coffee, good conversation and then relaxed whilst watching Black Adder.

           

To my surprise, just after I had physio, I heard voices outside my room, not expecting anybody I know, but who was it?

All the exciting news

Hello everybody,

I feel terrible for neglecting you all, and not keeping you up to date with the going ons in my life.

Things have been a little big hectic lately, between work, Club responsibilities, packing and keeping myself healthy.

As you all may know, our family is relocating to Hilton. We were supposed to be all packed and moved out at the end of the month. The 30th was to be our last day living in Pretoria.

However that has not materialised, until today.

The Results are out...

As you may recall, I posted on my fb Group https://www.facebook.com/groups/392256720827792/, that Kyle was being tested to see if he is a carrier of Cystis Fibrosis. 

We received the results today. We are both relieved and thankful to the Lord for this Blessing.

Here is the letter I received.

Dear NiQi

My apologies for e-mailing these results & not waiting for our consultation but as the results are good news & I know that you & Kyle are both anxious about the results, I thought that I’d give them to you before our next appointment.

Kyle DOES NOT have any of the 30 common South African CF causing mutations. This reduces his risk of being a carrier of a CF gene to 1 in 200 (compared to the general SA Caucasian population of 1 in 20). This then reduces your risk as a couple of having a baby with CF to 1 in 400. If you were ever to have you own biological child, that child would always be a carrier for CF (i.e. have one gene from you)

The only way that your baby could have CF is if Kyle carries one of the rarer CF mutations less common to the South African Caucasian population.

We’ll discuss this further at your next appointment. Please make a list of any questions that you have.

Regards

Fabulous and Fighting needs your help

The Fabulous and Fighting CF Trust Fund started off with a BANG in 2012...

Things were going very well, the fund grew, and grew some more. People were very generous opening their hearts (and Wallets- Hehe).. and I cannot say thank you enough to everybody who has donated since the funds inception.

A massive thank you must also go to everybody who has had fund raisers for me, no matter how big or small, they have helped more than you know.

Headaches....

Since discharge from last admission in January, I have been struggling with headaches.

I don't know why, or how they have come about, but I am assuming they are tension headaches. it always starts in the right side of my neck at the back of my head. And it seems to be getting worse.

I slept 90% of the day today. I can only imagine what a Migraine must feel like, and I salute  the people that live through them. You are Brave.

There seem to be a number of possibilities and factors. I spoke to my doctor and she told me that I have an excess of Carbon Dioxide floating in my body, that's a reason for the  headaches, and also for my, well I'd say memory loss. It's not really memory loss, I just forget things, and forget about things that I had to do. Also when I am speaking to somebody, my brain almost has that dreaded "Loading" logo running, before I find the words to respond.

Second option is my sinuses, I have battled with sinus for as long as i can remember. In the year 2000, I had nasal Polyps removed, and since then, nothing has really been done. So, today I went for a Sinus CT and the Doctor didn't seem concerned, or maybe he did. i was fast asleep when he came to spoke to me, so i only remember the last half of the conversation.

Option 3, is tension, and I think that this is the main issue. I cough a lot, and Violently, it puts a lot of pressure and strain on my head, and shoulders... well, on my whole body actually. I think that is where it all started, I have a knot in my neck, that isn't budging. It could also be my sleeping position. I could be putting strain on my neck.

In my opinion, I reckon that it is all 3 of those options combined. Lets see if tomorrow, my heads a little better.

Stay Fabulous <3

Clinic Visit Feb 2015

I know I haven't written in a while, but here is a quick update :

so today was my 1 month post admission clinic visit, and it didn't go too well. I have been struggling for a while now, and today my results showed it.

My lung function is only at 28%, it as dropped by 7% since discharge in January. It is a little concerning, and I am more breathless and tired. I struggle to do things without getting tired. Using the Oxygen a lot more, and I have more frequent naps as well.

But other than that, I am doing well, my weight is stable, at 58.6kg's, and my sugars look good. My Doctor gave me a few signs to look out for, and if any of them present, I'll most probably have to be admitted again. Let's hope not, as I would really like to be at home for longer than month. ;-D

Lots of love to all <3 <3

Something to Live for

When I was about 8 or 9 years old, Debbie and Sam Cross walked onto our property in KZN looking for grazing for their horses. This is where my love of horses steamed from. Over the years, Sam and I became the best of friends. Auntie Debbie taught me how to ride and look after a horse, how to muck out stables, feed them,groom and tack them up. She taught me how to be responsible. I will forever be thankful to the Cross family for welcoming into their home like a daughter, and introducing me to the equestrian world.

People often think having horses is easy, all you do is ride them. That is most definitely not true. There is more to it than meets the eye. And 3 years ago, this love and responsibility has gotten me to where I am today.

Support Systems

I thought I would share one thought with you.

Obviously having a lung transplant has been on my mind a lot over the last few years and it has and still is my goal.  I don't know why God has chosen me to be the one who just seems to be getting better and better, but I sure do know that it is not because I am in any way special.  I like to think that it has more to do with compliance and doing, or at least trying to do what the doctors tell me to do.  It is  and has not been easy, and everyone who is close to me will tell you that there are days when they want to pull their hair out with me - especially my mom - but I know that they are a right royal pain in my butt because they love me.  You will often read of others who compliment and say thank you over and over again to their 'support system' and the same goes for me too.  Truth be told, if they didn't care as much as they do, then I would probably not have pulled through all those years ago.

My mom is my moral fibre and if I even think about doing something that the doctors have said no to, then she has the ability to turn my way of thinking to one of absolute compliance.  My brother and I have been brought up with our parents drumming into our heads, that for every action there is a reaction.  It certainly has set us on the path to righteousness and in my case honouring my body.  Yes I went through the usual things any CF does, like hiding my medication away so no one would know that I had to take pills every day; and not being completely truthful about the extent of my disease, but at the end of the day, I have tried.  The last 3 years have made me more determined than ever and now having finally been listed, I see that I am one step closer to the reality of a transplant taking place.

You may wonder where I am going with this, but just be patient - and read on....

It's Today

The day before I get to go home, is always a nerve wrecking day. And just like every other "the day' before this one, I was just as nervous.

This is the day, that tells me whether or not, I get to go home, or if I am staying another week in hospital.

But today, is a good day. Let me tell you why.

Are CF's Cursed?

Some might say we are unlucky, we have been cursed, we are doomed and no matter what we do, we are going to have a miserable life and die.

One day someone was handing out sprinkles of CF and  said, "I pick you Joe; "Here, Joe, have some CF" but Joe ducked and the CF hit me.So now I am the one stuck with this disease, all because Joe ducked out the way.

Some people might say that Cf's have been blessed. We were chosen to have this disease because , We can handle it. We will inspire people. Live our life to the fullest. See the world in a way that other people won't.

I was speaking to a fellow CF recently, and they asked me a question, which I have no idea how to answer.
She asked me, "what are the benefits to having cf? What are the perks?" for eg: people with cancer get to smoke dagga. lol.

And this question really hit me hard. I actually do not know.  How does someone get to that point where they ask themselves that question everyday, "is their life worth it?" What's the point if your life consists of waking up every morning, to do the exact same things. To live your life taking medications, and feeling awful. What's the point of getting married when you know that you are or will eventually be a burden to your loved ones?

You can't live a normal life, you can't get up and go wherever you want to because you have to drag oxygen machines, medications, & nebulisers along. You can't have your own children. Your family and your spouse will have sleepless nights worrying about you. The nights that you can't catch your breath. You're too weak and exhausted to bath, so you have to rely on someone. Having to be pushed around in a wheelchair. The simplest of tasks, but a burden having to get someone to be the pusher.

The stress that this disease puts onto your family is almost unbearable. Let me tell you, this is disease is most definitely not for sissies.

This is where the mind comes into play. The mind is a powerful tool, and once it has a hold of that one thing that keeps you under, you'll never see the sun again.

Thought, like all potent weapons, is exceedingly dangerous if mishandled. Clear thinking is therefore desirable not only in order to develop the full potentialities of the mind, but also to avoid disaster. Giles St. Aubyn

It is a difficult thing to explain, and as I haven't crossed that threshold into the negativity of the disease, I wouldn't know how to answer that question. Yes I have my days, the days I ask why me, why must i suffer. But I have never dwelled on the fact that I have no purpose in life. 
I too hope to never get to that point in my life where I am able to answer : "What is the point?"

BIO + KINETICS = LIFE + MOVEMENT = LIFE THROUGH MOVEMENT

The Science of Movement and the application of exercise in rehabilitative treatment of performance.

As you may already know, or have read before. Part of the process towards having a lung transplant is building up muscle mass. You lose muscle mass a lot slower than you do Body Fat. 

Putting on weight is hard enough, but now, as sick as you are/feel, you then have to still exercise. It is tough. Some days you just really don't want to, especially when you are getting sicker (Than you already are) . I don't know about other CF's, but I kind of reach a plateu, I get used to my body functioning at the low capacity that it does. But I get accustomed to it, and can then do things comfortably within those means. However, you then start throwing things into the mix, and your body has no idea what to do, or how to handle these situations. But just as with everything else, you adjust.

On Wednesday this week, I had a Biokineticist see me. This is something new that the doctors are trying with the transplant patients. Getting someone in, to help us, show us and motivate us to build that much needed muscle. Especially in the upper torso. In the long run, it makes your transplant recovery more manageable.

The first success story was with Dave Richardson. Dave was 100% worse than I am, he was sicker and skinnier. He was skeletal. Dave then started with the bio kinetics, and from what I have been told, he was a completely different person. The Doctors and surgeons couldn't believe how much muscle he had when they did his transplant.  

So this is Byron, my Biokineticist. It may help you to know how the CF factors into this story. His father is DR Paul Williams. The Milpark Transplant Doctor. 

Byron came to see me again, and I was speaking to him today, asking why he got into this whole thing. And he just grew a passion for it. He generally works with spinal injuries, but he then did research on biokinetics in CF's and hasn't looked back since. 

I have only had 2 sessions with Byron, but in those 2 sessions, I think it is the stiffest I have ever been. These exercises really work every muscle in your body. It is tough, I won't lie. I think to myself, is it worth it? Should I carry on? But, I have to do it! For the good of my own future. If I want the best Possible lungs, and Best Possible outcome, i have to work hard, and do my utmost. Don't you think that I at least owe that to myself, my family and to the Donor?

On Wednesday, we worked on legs, lunges mainly. And today I received on of those exercise bands, and we did some really intense upper body exercises. Tomorrow, I may just be placing my head in my food to eat that way, because I will in all probability not be able to lift my arms. Haha

Those little bands look like nothing, but trust me, they're something alright!

It is going to be a long, tough road ahead. Having to have the discipline to do this at home (according to workout from Byron) will be a big test for me. I am sure that I can do. I just have to.

So to all those people that exercise regularly, BIG UPS to you :-D

Food Food Food

The weight game is on. On arrival at Milpark (Saturday) I didn't weigh in, but I weighed in on Monday, at 57.1kgs.

Today, I weighed in at 58.6kgs. So within 5days, I have gained 1.5kgs. Quite impressive you might say? I'd say so too. The amount of food that I consume in a day at the moment, is: For a lack of a better word, is INSANE!

Along with my usual Full 3 meals a day, and snacks, I am having supplementary Protein Shakes, 2 different kinds. Fresubien 2kcal, and I have recently started on Skandishake. Along with all of the extra drinks, I am still having my night feeds.

                                                                                                              My Bottle for my Scandishake

Night Feed

I am on also on a supplementary Oil, called MCT Oil. It is the one and only oil that us Cystic Fibrosis Patients can absorb and Digest. However, what Offends me at the moment, is this HIGH FAT DIET that is apparently a big crazy. And one of the newest things for people to do is to now use MCT Oil in that diet. Here we are, battling to gain weight, and there is now finally a product to help us do that, and it's now part of a DIET.... which I find to be quite contradictory.

 This is the point in my admission, where the steroids are kicking in, and my appetite is out of hand. All I think of is eating, and when I am not eating, I feel guilty. It does get rather frustrating, because I am full all the time, yet I just keep shovelling food down my throat.

 You would think that I have Prada-Willi Syndrome (incessant desire to feel full due to a defect found in the Hypothalamus).

My daily routine looks a little like this :

• Breakfast (Toast, egg, meat, tomato)
• coffee
• 2 kcal Shake
• Snack
• Snack
• Coffee and biscuits

• Soup
• Lunch (Starch, meat, veg) double Portions
• Chips
• 700 ml Shake
• Biscuits

• Supper ( Starch, meat, Veg) Double Portions
• Pudding
• 2 kcal shake
• chips
• coffee
• snack (toasted sarmi or Wrap)

• Wafer's
• chips
• 2 kcal Shake

And then between all of that, I still want to eat more! Lol

Here's to staying happy, healthy and Plump

xoxo

 

oh "Mic-key" you're so fine

A couple of months ago, you may remember me telling you about how my Mic-key had burst, and mom and I had to put in another one temporarily. 

I have been waiting for my hospital admission so that the Reps from Perry hill may come and see me. It's easier when I am in JHB, so they don't have to trek out onto the farm.

Trek to Milpark

Moving is always fun, isn't it. Well today, I moved from the JHB Gen to Milpark.

Luckily kyle was with me to help be my cart-horse and lug all my bags around.

I can never understand what, or why I have so many bags when I go to hospital. I don't have a lot of stuff, one bag with all my extra food and snacks, my main bag with my pj's and essentials, and then my laptop. Yet it looks like I am going away for months.

Hospital 2015

So today was my clinic visit of 2015

It has been almost 4 months since my last admission. So it was now time to have my 2 week IV course.

I phoned through and organised for my bed at Milpark to be booked for Wednesday (Today), and all was supposedly sorted.

I landed up today, really frustrated with all the calls I have having to make to Discovery to try and get an Authorisation for my admission. I can either not get through, or the Call center people keep hanging up on me. Anyways, after many attempts , sighs and grunts, I manage to get through to someone, who then says to me, I need a "Nappi"number for the medication so that they can authorise... This is news to myself and my Doctor because they have never asked me for that before. I said thank you, and hung up.

I then proceeded to phone Milpark hospital to check if my bed at section 7 is still waiting for me. After trying 5 times and the ward phone continually ringing, I phone the switchboard and get them to put me through, only to then have the cellphone cut out on me. One final attempt, I dial the number and let it ring, holding my breath, hoping , waiting to hear a voice on the other end.... FINALLY, I hear life, a voice, a person.

I asked the nurse if my bed was still available, and the very nice sister on the other said says to me "No my Baby, there are no beds. Did you book one?", (so of course I am now about to burst into tears), I said to the Nurse, that yes I did, I called through on Monday, and the lady that helped me said she would put me down for Wednesday admission.

So to sum it all up, I battled with Discovery, and the ward only to have all my effort turn out with a NO. eeek!

So what do I do now? I have dragged my mom, and Kyle all the way to JHB, with my things for my admission. There is no way that I will be going home, and having to do this trip all over again.

My Doctor then said that I can stay at JHB Gen, until Milpark has a bed for me. I really don't mind. I am enjoying seeing all the staff again.

it has been some fun and Games in the few hours that I have been at the GEN, regarding medication. I got mom and Kyle both helping me mix up my medications. I needed to start my drips as soon as possible.

 

 

 

I am on Tazobax and Colistin Iv's. I am used to having 2 million units of colistin in an Iv, but last admission, the Doctors put it up to 3million (3bottles) in 100mls saline 8hourly over half an hour, which was still alright.

However, my stat dose today of colistin, was 9 MILLION UNITS in 100mls saline over an Hour, so that was triple the normal dose, in half the time. Needless to say I now have a type of vertigo (or something), It's almost as if my feet don't touch the ground, and I am hovering above my body. I can't focus too well, and if I walk, I feel "Drunk". It is the wierdest thing, it's quite cool, but I really don't think that it should happen every day. Haha,

The Sister here, called my doctor and asked her what we should do, and should I still take my Normal Colistin dose tomight, She said yes I must try, and If I still feel "vertigo"then we will reassess tomorrow.

So that's about all for today. 2 week admission, starts now!

I will keep you posted as to when I move over to Milpark. My Doctor as Milpark is rather distressed. My JHB Gen DR, told me that he can't believe there are no beds, and we must admit me there, he doesn't care, he'll find a bed. Haha, DR Pahad is very sweet!

Thanks all for reading

Stay Fabulous! xoxox

(Colistin Side effects - Transient neurological disturbances may occur. These include circumoral paresthesia or numbness, tingling or formication of the extremities, generalized pruritus, vertigo, dizziness, and slurring of speech. For these reasons, patients should be warned not to drive vehicles or use hazardous machinery while on therapy. Reduction of dosage may alleviate symptoms. Therapy need not be discontinued, but such patients should be observed with particular care.)