TWO yes TWO years on...

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Well, Well, Well,

I've decided that I've been a bad blogger for too long, so thought I'd give you all an update, if you're interested that is?

I'm not even sure where to start, but starting would be a start right? Confused myself there if I'm honest.

From where I left off I had my Fundoplication/PEG insertion operation, and was due to start my university course in Nursing in the April of 2015. Well, I started and it was amazing, I met so many amazing people on the course and in the halls. I have memories to last me a lifetime, but unfortunately due to my health I had to give it up because it just wasn't doing my health any favours at all. Of course I'm sad, of course I had the CF Sucks mentality for a while but... I'm over it, I've done it and at least I can say I've tried. And, I mean who's to say it's off the cards completely? Course it isn't I don't give up that easily, It might be a year down the line, or 10 years down the line but I'm certainly not going to let anything get in the way of it.

2016 was a bit of a rubbish year if I'm honest physically, and mentally. I just was so sick of being in hospital, and CF affecting every aspect of my life, especially when you try so, so hard to not let it define you, but sometimes it just does. Especially when that's all you have to constantly focus on to make sure your health doesn't suffer. Not only this but I lost a very, very close friend to Cystic Fibrosis. Her name was Donna, and my god did she have an amazing out-going feisty character and I loved her for that. I looked up to her like she was my big sister, she gave me the best, most honest advice. And in someways I have to thank CF for this because it brought us together, as cliché as that sounds. I miss her so much. I will write a blog post just dedicated to her at some point, but right now its far too raw. I love you so much mate, always and forever.

So now we're in 2017 can you believe it like I can't believe how fast the years are going. I've kind of come into 2017 with a "fuck it" mentality, excuse my language haha. But, I think life's far too short to worry and have regrets so I'm living my life to the full as much as my body will allow me to haha. I've got my 21st birthday to look forward to, I've booked a girls holiday abroad & I'm also hosting a charity night in honour of the amazing ward I am looked after for my condition. To find out further information about my charity night, or to donate then please Click here. So all in all there's a lot to keep my mind busy right now, which is all positive. If you're interested in buying any tickets for the charity night then just drop me an email by clicking here and I'll send you all the information on dates, prices and how you can purchase them.

I've recently come out of hospital after pretty much 5 weeks(ish) of IVs due to first of all catching a winter viral which floored me to then only being home a week and catching Flu A. All full and games hey?! Kiddinf! I can honestly say having the Flu is THE worst thing to have, ever. It compeltely floors you, I literally couldn't even lift my head off the pillow I was that exhausted. But, I'm home now, on the mend, still recovering from the Flu but feeling so much better both physically,  and mentally.

Thought I'd try keep this blog post short(ish) & sweet, but I'm going to try be a good blogger from now on  and blog more regularly now. Of course I'm going to keep blogging on health related topics, but I'm also going to try blog about beauty, and fashion too because I'm really into that!
Please give me some questions for my next blog so I have some sort of ideas to go off, it would be great if you could.

Thank you so much for reading, I've missed doing these blogs so much, it's so mentally refreshing.

All my love


Boredom in hospital means a little update...

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Hiya,

So I'm currently in hospital writing this blog post from my hospital bed with a lovely brew at hands reach (got to be done). I'm slightly going a bit nutty in here so  I thought I'd write a blog post and give a little update to keep me occupied.

Before procedure:
My last blog post I wrote regarding having various tests for reflux I have had all those tests done and it had been decided that I would have a Fundoplication done to stop my reflux, and also have a PEG tube put in at the same time to save two procedures. This is because I've done well over a year of Naso-gastric feeding and quite frankly having a PEG put in will save a lot of time from passing my NG, it wasn't an easy decision but I feel it is the right one because I know having this fundoplication will make passing my NG a lot harder as well. I have continued to do my feeds but I'm not allowed to do them overnight due to my reflux because the worry was it may have been going in to my lungs when I'm asleep causing me to get more infections in the lungs. This is a pain in the bum because it means I'm hooked up for a good few hours a day to my feed which is okay in hospital but at home trying to have a social life it was making it a lot harder. If you're wondering what the Fundoplication is well its a keyhole surgery operation (sometimes they may have to do open surgery but that's less likely) and what they do is repair any damage for example Hiatus hernias (which I do have) so they will repair that then wrap the top part of my stomach around my oesophagus so the stomach is tighter causing less reflux to come up which is good. The only downfall to this is that it has a strict diet of liquid for the first week such as drinks and soups with no bits, then really soft foods for another 4+ weeks this is because the stomach is a lot tighter it will be a struggle to swallow the foods and that will mean they could get stuck, and it could also mean that'll loosen the stomach so I'd have the same problems again. I hope that makes sense? I've calculated that after this operation I will have 15 yes 15!! less tablets to take daily which is a hell of a lot so I can't wait for that, and the obvious reason that reflux won't be a problem anymore nor waking me up at night hallelujah. A PEG is a feeding tube which is permanently situated in the stomach so unlike NG you cannot take this out and put it back in again. It is a lot easier for the fact it's instant access to hook feeds up in the day, or night to get those extra calories so as much as I've been against them, I do feel now is the right time for this to make sure that I am the best and healthiest as I can be for the start of my Nursing course at university in April, so it'll all be worth it fingers crossed...


After procedure:


Where to start...
Well first of all let me start by saying the operation went well and it took four hours overall. I was in recovery for about an hour and a half well so I was told. I then got moved to the Intensive Care Unit after my procedure this was planned as a precaution. I was in Intensive care for the night which was a sleepless night I must say having someone at the end of your bed constantly monitoring you is mad, but the staff were so lovely and helpful. The only awkward thing was because of the pain I couldn't really sleep so there was awkward eye contact haha. I was given a morphine pump and oramorph for the pain. The first two days after surgery which you'd think would be the worst was my best oddly. After a couple of days I started to go downhill, all the pain relief I was on was just not touching the pain at all, I was on a constant morphine pump, two hourly doses of oramorph, lidnocaine patched and IV paracetamol. The pain was not under control I was just out of it from all the pain relief I was on and I don't remember a good week of my life haha. I couldn't move from my bed, my dignity went right out the window this admission... My chest after surgery wasn't great either it was just one thing after another. I couldn't breathe properly nor cough because of the pain and it was much worse when coughing, I couldn't move or walk which wasn't helping my chest either. I was on 10 litres of oxygen at rest which is quite a lot. I also pretty much didn't eat for a week so I had to have blood tests daily to check all my vitamin levels and I had to have added vitamins IV and through my PEG. It was much more difficult because I couldn't swallow any tablets due to the Fundo so I had pretty much all my medicines in liquid form like a baby again but luckily down my PEG. My creon also had to be liquid form, and if I did eat my diet mainly consisted of soups and yoghurt's. Luckily my appetite is back, and now I'm able to eat pretty much my normal foods as long as I chew them properly.  Because my pain was so bad I was sent for a CT scan to see if there was any complications everything came back ok from the surgery side of things, but I was told that I had pneumonia which would determine why my breathing was so bad. I had to start moving and shifting the mucous because I would just get worse. The only problem was because I was on so much pain relief this affected my balance, and because I was bed bound for a week I had to learn how to basically walk again and strengthen my legs. I got severely exhausted from just walking a few metres and was needing 14 litres of oxygen to move around. But after persuasion from the physio and determination from myself everyday I managed to walk further, and I made sure I was off the oxygen so I could go home for day leave for Taylor's 1st Christmas. Luckily I was able leave so I didn't miss his first Christmas which I was so chuffed about. In this admission like things couldn't get worse I broke a rib as well just my luck. Luckily that pain is starting to ease and I'm feeling so much more better than I was. I've had a tough stay this admission and it consisted of me being in for five whole weeks. It's safe to say I'm now home and I am extremely happy about that. I'm so happy that everything is getting back on track now and I can look forward to starting my nursing. This recovery has by far been the hardest but It has been worth it I don't feel sick anymore, I don't have reflux and now I only take one anti-reflux medication compared to 15 tablets all in all so that's good. I'm also able to have my feeds overnight as well which is good because now I can pile on the pounds I've lost!
If anything I've learned from this admission is that how much support I've had of family and friends. I really cannot put into words how thankful I am for you all thanks for the messages and triple thank you for the people who have made the effort to come and see me in hospital, it means a lot to me.  This admission has also made me realise how lucky I am that I can do things for myself because not being able to move really for a week, or do anything without assistance was so hard, and I truly feel for those who need help 24/7 they are amazingly strong willed!
P.S extra thanks go to my mum and Chloe (my twin) who stayed with me a few nights in hospital and took care of my demands, it means a lot and I love you both to the moon and back.
Sorry for the rambles, hope you all had an amazing Christmas and got spoilt rotten, and had a lovely new year, make this year yours!!
all my love,


A-levels, Nursing and a little update...

2 comments:
I'll start from where I left off...

If you read my blog then you will all be aware that I was waiting to receive my A-Level results I promised that I'd blog what I got but I kind of got side-tracked.

Well, I'm happy to say I go three distinctions which is equivalent to three A's at A-level. I have also recently started another college course doing media makeup and photographic hair to keep me entertained up until I start university in April.
 





I'm so excited to start my nursing and I know that it isn't going to be easy to fulfil my dream of being a nurse but this makes me a whole lot more determined to get there. After a recent hospital admission the subject on what I'm doing at university came up and I knew what the doctor was going to say. After many years of discouragement saying that nursing wasn't the best career choice to choose I still have planned to go ahead with it. I have had a very rude doctor say to me a few years back "why don't you just do hair and beauty?" first of all that is pretty blunt and sexist and second of all telling me that is going to make me all the more willing to prove you wrong. I am aware that doing nursing holds many risks but I am willing to take those risks to help others. I was recently told by my Doctor that doing nursing will quite frankly "shorten my life span" although that was quite a shock to the system I am still going to go ahead and try to achieve my dream of becoming a nurse. This is because its a massive passion to me, and well to be honest if it does mean I have a shorter life then I'd rather have a short life and be happy and achieve everything I have wanted to do then have a long life dwell on what I could have done and have an unhappy life. That's my opinion anyway. So Edge Hill Uni see you in April!!

Well, i thought i might also tell you that I have passed my driving test and I am now finally legally allowed to drive Frankie the Fiat on my own. Woohoo it's about time I've had lessons for well over a year now...


Well health wise I've recently just came out of hospital from an IV course so I'm feeling okay at the minute! During this time I had an endoscopy which is a camera down my throat to have a look in my stomach, and oesophagus. This was done because I have had really bad acid reflux and severe nausea which anti-sickness and anti-acid tablets do not help with. They found that I have a hiatus hernia and esophagitis which is redness and inflammation due to reflux. This wasn't a shock but still hasn't really highlighted why I am constantly feeling sick, and being sick. I'm hoping that after my pH test it will help to outline more why! That's it really with my health nothing to major has happened which is always a good thing lol.

Wrap up warm guys and girls as it seems that winter is well on its way aha,
Chan x


A sentence to sum up the last few months isn't enough so...

1 comment:
I haven't written a blog post since March so thought it's probably best to write one. I haven't got a title for this one because I have had so much go on that nothing can be summed up in one sentence haha.

Well...

I have a baby brother called Taylor now, who is now 11 weeks old. He's absolutely gorgeous, so smiley and just makes the whole family complete.


I also enjoyed a girly week a way with my twin, Ebony, and Melissa to sunny Mallorca and mental Magaluf. It was amazing, I wish I could be back on the beach right now sipping cocktails...

&  I HAVE FINISHED COLLEGE. For me this was a big deal because I have had a lot of time of College this year due to health that overall I probably spent all of 6 weeks in College. I had so much to catch up on in the last two weeks of term that I genuinely didn't think it was possible. But I tried to change that and with a bit of a challenge which I love I made the impossible, possible and handed all my work in and edited it within a two week period. This meant I had to try and stay in College even when I wasn't feeling my best, and go home and still do work which meant I was up till' four in the morning most nights finishing it having a few hours sleep and back up at half seven for College. But, I did it, I completed it and I'm glad to see the back of it all. Such a massive relief. Good news is my hard work has paid off and I have just recently found out I have managed to get an unconditional offer at Edge Hill University for Adult Nursing which I wanted to go to, for April 2015. I haven't found my A-level results out just yet, but my University obviously have and I must of gotten the grades. So I'm not fussed really what I get because I got in! I'm buzzing! I'll try update you with my A-level results when I get chance (busy body an' all haha) I find out on the 14th August. & Good luck to all the other students who find out as well.

Health wise everything is still a bit up and down with me at the minute. I've had four hospital admissions since the last time I posted two of those being through A&E because my chest was playing up and my heart thinking 167 beats a minute was acceptable. But, I can say all my stays in adults have been fairly easy and I've not had too have longer than two weeks in hospital which is good. I had my annual review whilst I was in hospital and some of which still needs doing, I had my annual glucose tolerance test which I have now finally found out that I have Cystic Fibrosis Related Diabetes. I am not on any treatment for it as of yet as I am still having to monitor my blood sugars for the time being.

CF Related Diabetes is a bit of a weird type of diabetes its a mix of Type 1 and Type 2. The body still produces Insulin unlike Type 1 where the body does not produce any. People who have CF tend to develop CF Related Diabetes because as you may or may not know the body of a person with CF makes thick sticky mucous and overtime this mucous scars and blocks the part of the pancreas which produces insulin but not to the extent where it stops producing insulin altogether. Hope I've got that right, still trying to grasp the concept of it myself its so confusing haha.

Hope you're all well. Sorry for the long update.

Chan x


Four hospital admissions, a port and adult care later...

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Hiya blog world.

Not posted for a good while!

Hope you all had an amazing Christmas and a fantastic new year! I know I did!

So since my last blog post I have had four hospital admissions...

& also in that time I have transferred to adult care!!

A week after my last blog I was again admitted back in to hospital because my lungs were playing up! All went well and I managed to get my lung function higher than it had been for a while, which was good! I then had an admission in December for again a CF exacerbation. Then in January which wasn't plain sailing if I must say.

I had started the usual 2 week IV course which turned in to a bit longer as my CRP (Infection levels) on arrival was 43 then after my two weeks the day I was supposed to get discharged (typical) I was feeling pretty crappy and had a roaring temp of 39, I was throwing up so much I was literally throwing my stomach lining up LOVELY... I was dehydrated so I was put on full maintenance fluids, and only managing to keep temperatures down with IV paracetamol. My CRP came back and indicated I had an infection and they wasn't down after two weeks of IVs and was in fact 96, they then kept rising up to 154. The doctors were unsure why I was poorly, and sent me for various tests and scans.  I was on the brink of getting a lumbar puncture as they thought I had viral meningitis. Luckily I avoided one!  PHEW. But it still didn't really outline why I was feeling so rubbish. I started to get a rash similar to the rash I had when I was severely allergic to Meropenem and it seems I'm now allergic to Tazocin! another to cross of my list. After an extra few days in hospital I got myself better, but what caused me to fall poorly is still a mystery haha.

So I've just recently again finished another course of IV antibiotics and this time it wasn't in Paediatrics it was in Adults. This was decided in my first CF adult appointment. The unit and all the team are all lovely, friendly, supportive and welcoming. The rooms are amazing and they are literally like your own mini apartment. It has an en-suite, kitchen, wardrobe, fridge etc and the unit even has a washer and dryer how great?!

But that isn't what won me over it was in fact the food. You could have a full English, croissants etc for breakfast, various starters for lunch, and dinner and various main meals and desserts as well. The food isn't the typical hospital food, and it has special chefs just for the ward to cook proper meals! Literally every night without fail a sweet trolley would come round with various different snacks like walkers crisp, monster munch, starburst, smarties, rolos, freshly made cakes...  & may I add this was for FREE! (BONUS)

   YES THIS IS HOSPITAL FOOD!!!      


In the time I was admitted in to hospital at adults I had a port a cath fitted. This was planned. The reason why I had a port a cath fitted is because I've had a lot of hospital admissions the past year that my veins have had enough, and are pretty much scarred so access is a struggle. So, if you're wondering what a port is well... A port is a device which sits under the skin (about the size of a ten pence piece approx) and it has a catheter (Line) which is in a vein in your neck again under your skin and when you need IVs, bloods etc a needle is simply inserted in to the port  to administer drugs, or draw back blood. It is so much easier!



This is my port accessed
 

A bit of a boring, and lengthy update but felt I needed to upload a new blog aha. Hope you're all well.
Chan x
 
P.S after one failed attempt and a lot of revision I have finally passed my theory test, so that's one step further to being able to drive Frankie on my own, legally wooo.

Why are so many disabilities judged?

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This Blog post is a touchy but passionate subject to me. So before I start rambling on, I'm just going to warn you, you either are going to love it and agree, or hate it and disagree (everyone has their own thoughts and opinions). Basically what I'm trying to say is this post is going to be a bit like Marmite.

All disabilities are quite ignorantly criticised by the general public. I am one to have done it myself don't get me wrong. Sometimes you don't mean to do it, or sometimes you're just that narrow minded that you don't have the thought processor, and quite wrongly discriminate the disabled which is pretty sad.

Disabilities are not just classed on whether you can physically see it, disabilities can be classed on other things as well which you might not be able to see.

Invisible disabilities can be just as difficult to manage as well as a physical disability. I've noticed some people tend to ignore invisible disabilities, and their attitude towards them are damn right rude and out of order. For example on Twitter a lovely person with Cystic Fibrosis had a Blue Badge which she only uses on occasions when she can not walk far distances. A man quite oblivious to this seen her happily get out the car without a struggle, and seen she didn't have any signs physically to say she was disabled. I.e. a wheelchair, oxygen, walking stick, a limp etc. So he automatically thought she was disrespectful and using the disabled space for no purpose. She ended up getting a quite arrogant letter from this man (Below)
I thought I'd show you this as this is a brilliant example of the ignorance of society today. Don't be so quick to judge, just because a person hasn't physically got something wrong with them, doesn't mean their not suffering in other ways. Please keep and open mind and next time you judge someone who looks perfectly fine parking in a disabled bay just remember, looks can be very perceiving.
 
 
Visible disabilities have also discrimination from the public, and the ignorance of some public is appalling. When I walk around I see so many people gawping at wheelchair users or people who have a visible disability. It's horrific. I mean of course we have all done it, I have too but I've began to realise how horrible this may feel to be stared at, laughed at and even be abused for being disabled. It is horrible, vindictive and nasty. People with physical disabilities have as much right to a job as any other person, they have as much right to shop around like any other person, they are normal and shouldn't be treated differently and stared at for this. They're not from a freak show. Just imagine how you would feel if you was put in the same situation as people who have physical disabilities. Their confidence being diminished because of the public, they have took the courage to go out and face the world and we should have the courage and respect to respect them equally, and offer them help if they need it.
 
We are all human, we can not define normal so accept people for who they are, and remember "treat others how you, yourself would like to be treated".
 
The reason I've done this blog is because recently when I've been walking around with my Naso-Gastric tube in I've noticed the many stares I've been given, the snobby looks I've received and the ignorant comments as well like "Eat more". Some people say why don't you get angry? why don't you explain why? Well because it makes me laugh and feel sorry for people who are that narrow minded if I'm honest, and there isn't any point wasting my energy on getting angry at people for it. So you just tend to laugh and shrug it off.




The reason I have to have an NG in isn't because I don't eat because I do. It's because I am struggling to put weight on. So I have a liquid food of 2,000 calories a night to help keep me a healthy weight to fight infections and to keep my lung function stable. The reason why some people with Cystic Fibrosis struggle to maintain their weight is because breathing and coughing can burn more calories and breathing alone uses more effort than a healthy person so therefore we tend to burn more calories doing so. Another reason as well is that people's appetite when they particularly don't feel great isn't the best, and you tend to eat less so this again can make your weight suffer. 
Without NG.
With NG.
So all I'm trying to say is that something visible shouldn't cause judgement and turn heads in society it should stop. And that an invisible disability shouldn't cause judgement either unless you know the full story. I'm going to leave you with this question. If you was judged, stared at or treated horrible by people because of a disability whether it be physical or not. How would you like it? How would you feel?
 
Thank you for reading. Please share and lets change the way the society thinks and their ignorance to disabilities.
 
Many thanks, Chantelle x
 


Hospital, and a few things ticked off the Bucket List.

6 comments:
As you are all aware I was discharged from the Hospital over a month ago so not so long ago well I went back to the hospital to have a Bronchoscopy. This was scheduled when I was admitted but it got cancelled, so I had it rescheduled for a few weeks after being discharged. Everything went well with the Bronchoscopy which was really good news and they managed to remove a lot of mucous from my Right top Lung.

A few days after the Bronchoscopy I started to feel a bit bruised and more productive which was normal so I just left it. The Bronchoscopy was on the Friday and by the Monday I started to feel a little worse, and wasn't really improving. By Wednesday night I had a roaring temperature and no sleep due to my chest waking me up. It got to 7 o'clock in the morning and I never want to go Hospital but I literally couldn't hold a sentence together I was struggling so much to breathe, so I went to A and E to get myself checked out they did the usual obs. My heart rate was very high and resting at 176, my SATS were high 80's which is pretty low, so I was put on 5 Litres of Oxygen and my Temperature was a roaring 39.9. So something definitely was not right. I had bloods and an X-ray done which both determined an infection, what infection I still do not know. My CRP Levels (infection levels) were 96 and if I'm right they shouldn't be over 10 so yes they was pretty high. I started IV's and after a few days my oxygen was slowly reduced to 2Litres which is good.

My weight again was down and the last admission I was asked if I would start NG tube feeding, I kindly declined. But my weight had dropped so dramatically within a four week period that they asked me again. Again I said no, I said I will only do it as a last resort, and they said well this is really the only thing we haven't tried to help improve your Lung Function. So I want to stay out of Hospital for a little while so I went ahead and tried it, I now have NG Feeds at home overnight which gives me a lovely extra 2,000 calories while I sleep. I pass the NG by myself and have now been able to do it without drinking anything yay! I'm so glad I choose to have them because it takes so much pressure off trying to gain weight. Because when you're not well your appetite isn't really the best so it's good that I know I can have 2,000 calories without worrying. Plus I've noticed since I started the feeds I've managed to have a little more energy than usual which is really good. So if any of you who are reading this and have been asked to start NG/Peg feeds and unsure me, personally would recommend it p.s. if you want any advice feel free to Tweet me: Chanmillward_ :)

So yes my two week IV antibiotic hospital stay started and I was put again  on the Bi-pap and The Bird three times a day for my physio. These two machines are amazing they help so much! After two weeks of IV antibiotics and vigorous physio treatment I have managed again to get my Lung Function up a whopping 10%!!

I have waited over a year to see Jessie J at her concert and these tickets were bought kindly from my lovely Mum for mine and my Twins GCSE Results. So I was admitted the week before Jessie J which was really annoying and the Doctors were half and half whether to let me go due to being on Oxygen. But I was determined to so I managed to take my oxygen off for short periods of time a day to wean myself off it, and by the Friday of the concert I was only needing it overnight. So this meant I was able to go wahey! It was so manic because my Aunty and her kind friend managed to get in-touch with Jessie J's management, and if you don't know I'm quite a big Jessie J fan. They told her management what had happened, and her management then went on to tell Jessie J yes Jessie J!! And Jessie J said "she was touched by my story, and wanted to meet me" I was nearly having a breakdown haha! So I had to cram my afternoon physio in, my IV's which took around 1 and a half hours, and a shower in in the space of 2 hours!! I had to literally have a shower attached to my Drip pump and probably nearly got myself electrocuted but it's all good as I got to meet her! I probably wouldn't of made it there in time if it wasn't for my Twins help in getting me ready, so thank you! When me and my Twin met her she was really nice we got a picture, and then she said I'm so happy you could make it, and she said we was able to see her performance in VIP!! It was one amazing experience which I will never ever, ever forget. Thank you so much for my Aunty Emma, and her friend for making it possible for me to meet her! & thanks for Jessie (Even though she probably won't read this) for agreeing to meet me. So that is one thing ticked off my Bucket List, if you want to see the picture it's on my Bucket List page :)

Last but not least on my Bucket List I had a wish to get a car and it to preferably be a Fiat 500. Well you're never going to believe it I have got one, in White. It's called Frankie, Frankie the Fiat! Again there's a picture of it on my Bucket List Page, go have a nosey.

So there's been a few highs and lows but overall I couldn't be more happier. I have my UCAS sent off for Universities, and hopefully I am able to achieve my goal of becoming a nurse.

Thanks for reading. Please continue to share my blog and get more people aware.
All my Love, Chantelle x


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