It's sad to say but money is all people care about...

This week has been so crap for me to say the least. My college - Treloars, yes i am going to name and shame because something needs to be done about it!! Anyway back to whats happened, basically i got really chesty last week when i had just come out of hospital and it was pulgging my airways. If it had plugged off my airway i would not be able to breathe at all. So the house staff gave me chest physio untill the the physio arrived... which happened to take about 45mins. And because the house staff had to do physio for so long they have now said house staff cant do ANY physio on me apart from 2 mins each side each morning and then the cough assist. Ok, well i have been having 10mins each side of my chest for as long as i can remember. And suddenly im told on Friday i am not allowed any........ So as you can imagine i was quite shocked about this - willing to give it a go as it would be great not to have it every night and morning! But suprise suprise aster 2 days with no physio i was drowning.... i could not breathe and the staff were refusing to do anything about it. I went to the Health Centre and they said i was fine, i told them that if we waited i would get a lot worse but they did not listen. And as i predicted i was a lot worse, SATS had dropped 8% lower and i really could not catch my breath. The on call physio came out and was Amazing - cleared me with physio, suction and cough assist and my SATS were perfect after! I was so happy she agreed with me about the physio and that if i had had it i would not of been in this horrible situation.
Anyway my physio came and told me that my usual physio does nothing for my lungs (yea right!) and i was NOT FUNDED FOR THE CARE STAFF TO SPEND TIME DOING IT!!! i was fuming.... so angry and upset that Treloars dont care if the students get sick because they are not funded for an extra 40mins a day to make sure their lungs are clear!! I really cant say how scared i am to be here right now to be honest! There are lots of things wrong with this place, too many to list!
............ Ok rant over! But i do have a few AMAZING staff members that i can trust and i know they will not let anything happen to me :) One of them is leaving and im sure she wont mind me wiritng this but i will really miss our chats! she always knows when there is something up and always manages to get it out of me which makes me feel loads better!!!

So to summerise Treloars is a business and buisnesses are out to make money = End Of. - its a sad but true fact. They just want to make money which makes the staff as well as students suffer....

Ok moan over.... LOL i am determind to fix this problem but unitl then..... i shall try and keep quiet - i am already in trouble !!! haha

At this place i get into trouble for speaking my mind and the truth, and i get into trouble if i dont... so i cant win!!! But i do love my friends and the independace i get here, so i have to weigh it up...................................................

Endoscopy and Cough Assist

Hello! Well the day after I came out of hospital with my lungs I had to go back in for a planned endoscopy. Basically its a camera put down your throat and into your stomach and the top part of your intestine. I was not allowed any sedation due to my lungs and weak respitory muscles - it would stop me breathing. So i had to do it wide awake, it was horrible to be honest but it only lasted around 4 mins and my consultant was really good. They found i had refulx, which i already knew and gastritis... not sure on the spelling but its inflamation of the stomach lining. So this may explain why i have been having tummy pain! They still want to do a scan of my colon, bowel and intestine so i am waiting for that appointment to come through.
I was in hospital while my parents were on holiday - and still are until tomorrow night and i did it all by myself, i didnt contact them or tell them i was sick because it would ruin their holiday! I am actually quite proud of myself doing it on my own, it proves i can and i can be brave when i need to be lol!!

Cough Assist

One thing that has changed this time is that my cough has become a lot weaker, i cant shift anything on my own anymore. My usal chest physio now, i never bring anything up but i can feel it in the bottom of my lungs. Today the care staff told me that the physio had told them not to do my usual chest physio and just do the cough assist. I was, as you can imagine very anxious about this. My chest physio has kept me clear and well for so long i though that if i didnt have it i would get sick very quickly. But instead of my chest phyio i have been borrowing a cough assist macheine. It is great! I actually get stuff up every time i use it and it takes half the time! And i can use it everytime i get a bit rattly and it clears it, or most of it and i feel great after. I never new a macheine could actually cough so well for you! Im seriously looking at asking about getting funding for one. If it will keep me well then im going to go for it!

I have an appointment at the Brompton again on Wednesday so i will update you on the results of that.


Chloe :)

 

First Emergency Hospital Admission in 5 Months!

(14.10.2012)

Well, I'm sitting in my hospital bed bored. Lol My pseudomonas bacteria that I have living happily in my lungs decided they would start to breed a bit more... So my lungs are now over populated with baby bacteria ;). Haha this leaves less room for air or should I say oxygen so I  feeling very breathless at the moment and my lungs feel so stiff. On the positive I know it's not a new bacteria because I don't feel that 'ill' like I do when I have a new infection so that's good news, I also had a lovely shower today so feel a lot fresher and happy. Dad is bringing me in a happy meal later as I can't stand hospital food!!

I am on the usual pseudo  IV antibiotics - ceftaz and gentamicin along with my usual oral azithromycin and inhaled Tobramycin. This lot should kick pseudomonus's ass in so it doesnt flare up again for a while! I'm on my Bi-pap and 02 but getting there! Sorry this post is a bit short, I'm so tired all the time at the moment!

 

Tangled  in all my wires and tubes!

 



Bi-Pap and nebbing.. lol

Arterial Blood Gas :(



Night time IV Gentamycin

 

More Questions, DNA and More Waiting.... But Positive :)

Well today was the day. My first appointment at The National, Queens Square London. My Neurologist was amazing! Dare i say it but i think i have found the team who will find out exactly what is wrong!! He did a complete Nuro Exam, checked all my muscles and their strength and took a full history looked at all my previous tests and results, scans and biopsy's. He came to the conlusion that i do indeed have Myopathy, and the wasted muscles in my body which is mainly my legs, trunk, arms and breathing muscles are gone and I wont ever get them back. I was shocked how blunt he was but so greatful for his honesty. He has been the first doctor to say it how it is and i like that, it makes me more determind and know what to expect. I can also tell my OT and Physio at college that they dont need to make me stand in that painful standing frame to try and get me standing again, because it WONT WORK, whats gone is gone and i dont need to go through the pain any longer! Whooo!!!! Although i didnt mind it at the time becasue i thought it might help! So from now on Me, Hoists, electric wheelchairs, slide sheets and carers are going to become my best friends!

 He told me that he thinks i have an underlying genetic disease / mutation of genes (I'm a mutant!) that is causing all my issues so he took litres of blood (haha not really but it looked like it) and im going to have an MRI scan of my leg muscles as they are the worst affected and he wanted to see me in his next available clinic space.... which is in 7 months!!! LOL

They were really good at taking my blood there, first go and they got it! i was amazed! usually takes at least 3 stabs! So overall a really good appointment. Sad that my fears we true but i knew deep down i was progressing but the honesty and compassion from the team encouraged me alot. Im also doing a little experiment for the Team. Becasue all my other doctors insisted my myopathy was from my treatment for my lungs - (i had a form of chemotherapy drug when i was very sick with my breathing and many high dose steroid infusions and now i have been on continuious steroiods for 2 years.) they insisted and would not take any other path into why i had a progressing muscle condition, just said it was 'myopathy caused by steroids' and left me to get on with it. This team are looking at me as a whole person, looking at all my conditions - the diabetes, the lungs, the muscles, the GI system, immune defiency, bones, my liver disease... and i could go on for hours! And i hope they will be the team who will put all the peices together and find the CAUSE, and not just treat each disease as i bloody get them!! So back to the point, im doing an experiment of coming off steroids completely and seeing how my muscles do, if i get worse then he was proven right, if i stay the same then all my other doctors are right. But of course i cant do this if it affects my breathing so i am going to have to be very careful and start the weaning slowly! I will prove him right though because i know deep down that my issues started way before any steroids touched me. And to be honest i cant wait to prove this! If a Expert in this feild agrees with me, and thinks its a genetic condition then We must be right ;)

Another great point that they said today was that if they find the cause, there may be a treatment to slow down progression, which i think is AMAZING! So i am a VERY VERY VERY happy bunny ;)


Thanks for reading my ramble!!! :)

Lung Pain...??

I get this really weird pain in my lungs at the end of most days and every night with no fail; but some days worse than others and tonight is one of them so i thought i would post about it. Its so weird cuz when i dont have the pain i think to myself - stop feeling sorry for yourself, it cant be 'that' bad and then when i get it, it is that bad lol! Its like a pulled muscle in my lungs/ side of ribs that aches soo bad and it also cramps... like cramp in your leg and i cant catch my breath. - well what breath i actually have in the first place LOL! And then my actual lungs feel so stiff, like they are filled with cement and every breath is so heavy. My o2 sats only drop a little bit but when i get the cramp they drop to the 80's untill the cramp goes then back to my normal - this was with my o2 and Bi-pap last night. When i next get a cramp i will check them again and see if the same happens. But i really dont know what is causing it? Its probs just my worn out puffers having a strop wanting a rest on Bi-pap but then cramping while on my vent is weird. I just ignore it if im out and about and just carry on what im doing to distract myself which i actually do find helpfull! But im not sure how long i can keep this up for as its becoming more frequent now. My MST (slow release morphine) used to be ok on its own but now i need oramorph as well as a top up to help the breathlessness episode and pain. I really want to know whats causing it! I am gunna try to have an hour or two on my bi-pap during the day to see if it helps, it might rest my resp muscles and therefor stop the cramp / pain. Anyways i shall stop my moaning now!!
Hope everyone had a good Weekend!

lots of love
Chloe :)

Oh yea i wanna show you my new SATS and heart rate monitor! PINK! haha




*Edit* i think my lungs knew i was typing about them ....

This was at the start of a cramp just now.. dropped to 78% after, but as soon as the cramp goes away my sats go back to my normal! = strange!
(They only stay like this for about 5 mins, so its ok!)

Back to College...

Thank God it's Friday! This week has been so tiring! The first weeks back always are I think. I had my first week of A-level Biology, and i am really pleased to say i actually understand and enjoy it - well so far so good! My coursework for H&SC though is taking ages, there is a lot of it and i really want to get it over and done with! Its times like this i realise i prefer exams! ( yes, im a geek :/ haha)

My health has been good! Apart from my immune system. My consultant took me off my immune system replacement infusion for 7 weeks to see if i had started making my own cells but after taking what felt like litres of my blood we flound very very little immune cells in my blood. Which means i am not making enough Immunoglobulin cells and my immune system still does not resopnd to vaccines. So at the moment i am at very high risk of infection and im feeling tired due to the lack of immune cells. I feel so much better on treatment so hopefully I can go back on it, this will not only make me feel better but actually help me stop getting infections that a 'normal' health person could fight off. As you know chest infections for me now are very risky, my lungs cant handle it and it puts my life in real danger. We as a family now know to prepare for the worst if i get a chest infection, but i have also learnt to start extra antibiotics as soon as i get any symptoms of infection or a cold and this helps it stop being so severe.

One thing that has upset me this week is  going through my old care plans and things from my first year at college, i use to stand transfer and be very independant but now im hoisted and cant put any weight through my legs or sit up on my own or itch the top of my head! And because i dont have an 'offical'diagnosis of a progressive muscle disease, my OT & physio's (who are new to me every year) ask me to stand transfer or sit on the end of my bed and they wonder why i look at them as if they are idiots! My muscle biopsy was abnormal but they didnt know if it would progress or stay static... and as we have found out it is obviously progressive as the ammount of physio and work i have put in for me still to get worse shows this. This does upset and scare me a litttle but then again, its just something else to make me more determind to suceed in life.

I have my first appointment at the The national hospital for neurology and neurosurgery Squeens Square London on the 2nd October so im actually looking forward to see what they have to say, a fresh pair of eyes on my condiditon might actually give me a diagnosis.... well, thats what im hoping! wishfull thinking i know lol!!!

So overall this week has been ok! I just hope luck stays on my side and i dont pick anything up from these germy college people!! Hahaha!!!

I just want to say that my best friend Amy had gone off to Uni to train to be a kids Nurse!! She will have the time of her life and make an AMAZING nurse!!! I am very jel, as this would be my own dream job so she is gunna have to do it for both of us!!!! LOVE YOU LOTS AMY and Good Luck!! I will be over to your house to invade very very soon!!! ;)

?! Transplant ?!

Transplant... a scary word. We all know that my lungs are in a crap way but when do you decide to risk transplant? A few months back after a really nasty infection which left me in ICU and long hospital stay, all my blood gasses (ABG's) showed i was in type 2 respitory failure. I felt awfull and so tired. I recoverd slowly and 2 weeks after leaving hospital i had a clinic appointment at the Brompton. I saw a lovley consultant and i asked about transplant.. she was so nice about it, explained it to me so well and said if she was in my shoes she would go for it. This made me want to go for assesment even more,she explained it was not a cure, its risky and its swapping one set of problems for another. BUT it can lead to a much much better quality of life and longer life. Then we went on to talk about my other issues..... because we are not 100% sure what is causing all my problems we dont know that if i get new lungs, the same wont happen as it has to my own. The other side of this is that even if it did happen to my new lungs it would still improve and extend my life. It's so hard to try and make the right choices but i suppose you just have to go with your gut instincts.... right???

I will ask about it again at my next clinic, but i think i am going to wait, wait until i have my appointment with my neuro to see if we are getting or going to get any closer to a full diagnosis.

I just dream of the day i can leave the house without having to plan every detail, fill oxygen cylinders, make sure i have had enough time on my vent..... that would be bliss!!!