Oh my gosh! Has it really been June since I last blogged...thats terrible!
A lot has happen, Im sure my last blog was about my nanny passing away. So its been almost six months since then. Time has gone very quick and it really hasn't gotten any easier.
My health has been okay-ish. At the end of July I started to feel a little unwell, I was very tired, no energy..wasn't eating and just overall felt like i did before my transplant. Just very very pants. It was a Sunday that me and my mum, step dad, gramps and Scott went fishing. I shouldn't of gone really, I just sat there and didn't move, i felt hot and cold, i didn't eat anything and walking from the car to the pond thing was just awful, i felt like i needed my oxygen back. Later on that evening when we got home i got into bed and slept but woke up soon after and was sick so i decided i should go to A&E. Me Scott and Mum went, They gave me an IV drip of anti sickness and started me on some fluids. We were there quite a while, it was about 2am before i got moved onto a ward. The next day i got started on some IV anti-biotics. My port which i normally have my meds though wasn't accessed and there wasn't a nurse there that knew how too!! So i had to have canulas put in...and A LOT of them!! they only lasted a day each so my arm and hands were completely bruised and very sore.
They weren't very good at giving me my anti rejections, they are due at 8-10-4-6-10 and they were always late! My family had spoken to them about it and if they wouldn't improve my mum was going to take me home. But finally after a week i got to do them myself. And after a week i got moved to papworth. I was there a few hours and they told me i had a type of pneumonia, so i was being treated and after a week they said i could go home. But the day before i was very short of breath and my oxygen levels had gone from a good 98% to 82%. I had to go back on oxygen, and i couldn't even walk to the bathroom so i need a commode. I just felt like how i was while i was waiting for my transplant. It was awful. I was very scared to. I had to have a number of test that day to see what was causing me to be so unwell so quick. It wasn't rejection. Thank goodness. But after i had a CT scan they noticed i had a infection on top of my air ways which was leaking into my air way on my left lung and blocking it up so it was very hard to breath.
I had to have a bronc to look into my lungs and suck up the blockage but the sedation just wasn't knocking me out so i couldn't have it done. A few days later i had to have a ridged bronc, they had to give me a general for that so i was completely knocked out. The tube they put into my lungs was quite large, so after i was very sore and coughed up some blood. I'm not good with any sort of sedation so the general made me hallucinate lol i was seeing some very weird things. One night i thought there were 3 ladies at the end of my bed in space suits!! haha.
After the results came back from my ridged bronc it wasn't great news, my cepacia from my old lugs had returned, thankfully not on my lungs just on the top of my airways. But as i like to be complicated i was the 3rd person that they had seen with this but there really weren't sure what to do and they said that i will eventually have to have an operation, Its like having a transplant again, they would have to re open my scars and scrape and clear my lungs out, but its very risky and the surgeons aren't feeling great about doing it. They left it and just put me on different IVs. Obviously i was very scared. I had just got my life back and it felt like it was ending. I really didnt know what to think or do. But i was allowed home on IVs. I was on them 9 weeks!! I finally came off them 3 weeks ago and my lungfuction had gone from 40% to 90% yesterday!! hey are very happy and they said they hope the infection has gone *touch wood*
I feel like im getting back to normal again, off oxygen my weight is going back on (slowly).
But at the moment im really struggling mentally. I feel down a lot of the time and i don't want to leave the house. My confidence has dropped a lot. I hate how i look, my hair is thinning and falling out due to my meds so i need to have it cut short, which i don't mind as i like how i used to have it. and im hoping that will make me feel a bit better in myself. Iv been having quite a few panic attacks too. So in myself i don't feel great. And some of you might think why am i feeling like this when i have had a transplant. I hope i don't come across that im not thankful to my donor. I think of her everyday. But iv had a confidence drop. I feel like im in a rut. I know il feel better about everything soon.
Here are a few photos from over the last months ....
after (yesterdays xray)
Thank you for reading :) xx