hey stranger

it's been a long time.
there has been a lot of things going on.
there have been lots of thoughts in my head.
there have been lots of emotions felt.

i think i have figured it all out in my own mind now :)

after the last admission i went home and i really struggled, more than i ever have before.
i felt so breathless just at rest that i wanted to put my oxygen on so i kept that on 24/7 apart from when i went to bed at night, that's when i would swap to my A40 NIV machine.
i was sleeping so much, i just felt so tired. i needed help doing most things, washing my hair, making food, walking up stairs, going to the loo, taking myself places, i rarely left the house. when i was coughing it felt like i was suffocating, i just couldn't get the breathe in that i needed whether i was on oxygen or my niv. it was awful and scary.
i was waking up in the mornings feeling like my head was on another persons shoulders, nails blue and sweaty!
i bought a sats monitor a few days into feeling like this. i was absolutely devastated to find my sats were dropping to a scary 57-65 at times and sitting mainly at 82-92 on niv and oxygen. my sats are usually 94-96 on air and 96-99 on oxygen or niv.
i went to clinic but was given the go ahead to continue at home as my chest was okay and we didn't feel that IV's would improve me. We wondered whether this was the next stage of my decline or aftermath from a virus i had on a previous admission.
we hoped for the latter.

a few days later and i was feeling worse, i was sleeping most of the day and night, trying to eat but giving up half way through due to it being too much effort and relying on everyone for every little thing. i was absolutely gutted, i knew this was how i was going to be.
one night i was home alone and got bored so after cooking my tea, i made cupcakes and then ate my tea, as i stood up to wash my empty plate.. i just felt this wave of awful, strange weakness & pain flood my whole body, i went dizzy, my heart raced, i gasped to try to catch my breath & dropped to my hands and knees dropping the plate with me.. i crawled to the front room to pop my oxygen on & check my sats, 47 & heart rate was 187.. trying to stay calm i lay on the settee with the oxygen blasting in my face. it was my own fault for getting cocky, i had been having a good day and so thought i would spend the evening without oxygen, i cooked tea & cupcakes and wasn't breathless so continued doing the odd bits & bobs but it obviously caught up with me.
i soon recovered once on the oxygen and from that day i never took my oxygen or niv off. having a heart to heart with my dad a few nights after, i cried to him and told him that i was scared and disappointed with how i had been the past two weeks. the next day i called for a bed and was taken in via clinic.

settled into my room, i felt happy in the knowledge i was where i needed to be.
thats when the fun & games started.

i woke up coughing & literally choking on my sputum, the nurse came running in along with physios, i was put on high flow 35% oxygen & the V60 niv machine, that episode lasted an hour, my sats stayed in the 50's the entire time & by the end i felt so exhausted that i slept all morning till the afternoon. the next day the same thing happened three times, i was given a little morphine to help with the breathlessness & the anxiety. these episodes continued randomly for a while but they were getting better, i was able to get control back sooner rather than later and i didn't need the morphine anymore.

i have been in hospital for 4 weeks now and have only just started having an hour a day off the niv and on 10 litres of 28% oxygen :)
i was struggling to have 10 minutes on oxygen this time last week so getting an hour or so is a big achievement for me.

it's been a bumpy admission with different things happening and blips popping up here & there but i think things are finally in the right direction now. my biggest problem at the moment is my blood sugars. they have been running at no less than 20, normal range is between 4 & 7. no amount of insulin was helping and my appetite isn't the best so can't blame it on an abnormally good binge of food.
so today they put me on a sliding scale. it gives me insulin every hour and the amount of insulin is dependant on my blood sugars.
this will give us a good idea of just how much insulin i am actually needing right now to cover whatever the reason is to them being so high. so far so good :)

i have been told off my physio that i will be needing oxygen 24/7 now but i had come to terms with that over the past month. it was just a big shock for it to happen literally overnight & i'll have to get used to doing my daily stuff at home with oxygen coming along for the ride too, it shouldn't take long :)

i have just had liquid oxygen installed at home as the usual portable ones weren't even lasting me a couple of hours out, then you have to wait for re-fills to be ordered & delivered which can take two days and god help you if you run out on a thursday afternoon or friday. you're housebound for the whole weekend. thankfully, liquid oxygen can be filled by myself and they last longer too. perfect!

well.. my aim is to have two more weeks in this place and get myself as good as can be in that time to have my 21st birthday (9th of July) at home & my 21st birthday party (12th of July) too. The party is 1950's theme and i can not wait for it & to brag about it afterwards. expect a blog solely dedicated to the event after the 12th of july :)

i think that's enough update for now, it's very late & i need a sleep.
i am gonna try to do an update on my transplant situation soon too :)
were getting close to it being a year since i was placed on the active transplant list.
come on new lungs.. i'm ready for ya!!
i'll treasure you & take such good care of you, i promise <3 p="">
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  1. You're blog is amazing! Hope you're feeling better :) x

    1. thank you so much, didn't think anyone reads my posts anymore but i really appreciate your comment. hope you're well !! x