Sunday, 16 September 2012

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!)

Friday, 14 September 2012

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!!! ;)

Monday, 3 September 2012

?! 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!!!