The Journey Continues

Hello! 

I'm sorry I haven't posted anything in a while! it's been quite a busy month or so. Radiotherapy was going well, I went to butlins with my family and then went to Oceanfest in croyde with my friends which was amazing, we all had hennas and it was just so much fun, Luke Friend was there performing on the Sunday and then he came along the barrier to have photos with everyone and luckily I was at the front! He is so lovely in person but of course he is - he is from Devon ;) I went to Radiotherapy the Tuesday after and the doctors said I needed to rest for the rest of the week, which I did. That Friday I had radiotherapy again and was feeling so exhausted I was falling asleep whilst the doctor was talking to me, she said if i had any problems during the weekend with my chest to go to Exeter hospital. Saturday I was okay, Saturday night wasn't so great.. I woke up in the middle of the night with a very tight chest, pain and was struggling to breathe, I checked my oxygen saturations and they were 87. I decided to do a nebuliser to see if anything would come up but it didn't and made things worse, so then I went to my local hospital to get checked and was put on oxygen and transferred to Royal Devon and Exeter, my neutrophils were mega low so I was neutropenic, I had an X-ray when I was at NDDH and it shown some shadowing on the left lung so my doctor thought I had an infection, when I got to Exeter I had another X-ray and the shadowing was on the right lung too, the doctor at Exeter then said that the Radiotherapy has caused this and why I needed oxygen, my red blood cells were very low too so that is another reason why I needed oxygen, Exeter was going to give me a blood transfusion but GOSH said not to as that can make my rejection worse. I was in hospital for about a week and everything was getting better, my oxygen saturations got better so I didn't need the oxygen anymore, but the doctors didn't want me to start radiotherapy again until my neutrophils were back up so I went home on Tuesday the 7th and carried on with life.

I started to go out again and it was all good! THEN.. 4 days later(Saturday 11th) I started to get some really bad pain in my stomach and I mean REALLY bad pain, at first I thought it was what I usually get when i drink too much coke (trapped wind) but the pain was getting worse and worse! I was meant to be going up to the hospital that sunday anyway to have bloods done but I couldn't move at all, the pain was too bad. My mum rang my nurse and said I couldn't come to the hospital because I have really bad trapped wind(LOL) but my nurse said I needed to get to the hospital straight away because she didn't think that was the problem! I got to the hospital eventually and my nurse said she thought I had DIOS(blocked bowel) which is what CFers get! I hadn't slept for 2 days because I was in so much pain and they didn't want to give me morphine because that could make it worse but finally they gave me some and then I wasn't really with the world for 2 days because I was having regular morphine and people who have and that before know what I am on about! I was transferred to Exeter after being at NDDH for one night but there was talk about me going in a helicopter to Great Ormand Street because I might of needed surgery. but Exeter finally decided if I needed surgery I would have gone to Bristol so not too far away. They got a NG tube down me after trying twice! and they managed to unblock my stomach after trying different things but I won't go into too much detail haha! they tried klean prep down my NG tube and that worked straight away! thankfully! they were worried my stomach was going pop because it was that big! again, I was on oxygen because sometimes your SATS drop when you are on morphine and obviously I was one of those people! Then we had the problem with my neutrophils again and they were too low! I was having GCSF through IV but they were still like 0.8 so I was still neutropenic! I was transferred back to my local and still needed GCSF through IV, they let me home for the day on Tuesday for my nephews 3rd birthday! after having GCSF for over a week my neutrohphils are now much better and I am now at home again!

It has been such a hard month! I really hope things are good again from now on! I am allowed to start Radiotherapy again next week. I only have 4 sessions left so it will take 2 weeks to finish. Next month I have another busy month!! I am going to be 2 years post transplant on the 10th august!! I also have other things planned but I will blog about it all! I'm so sorry this has been a long post!!

me and mum

my gorgeous friends <3

Luke Friend!!

As Always, thank you for reading

Speak soon

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Radiotherapy Appointment

Hello.

I had an appointment today in Royal Devon & Exeter Hospital to talk about Radiotherapy, we had to talk about all the side affects that I might get, like tiredness, redness on the area of skin, sickness, and the long term affects it might have, I didn't really want to talk about them but of course you have to. Then they made the mask for when I have radiotherapy and they also made a mould for my legs to keep me still, when they were moulding my mask it felt quite weird and at first I felt claustrophobic but I didn't panic which is quite good for me because I usually panic when things like that happen. I went for a CT and had to have the mask on, it felt ok and I think I will get use to it, they drawn 2 dots on my stomach at the beginning of the CT and at the end they made them permanent so 2 small tattoos, they are so tiny you can hardly see them. 

I start radiotherapy next Tuesday but me and dad are going to Exeter this Friday for a trial run but not actually have the radiotherapy, I will have it every Tuesday and Friday, this will affect my plans for this month that I mentioned in my last blog post, because my immune system will be very low and I can catch infections easier, which is annoying but i would rather have the radiotherapy to try and get rid of the antibodies!

But I am very excited to see One Direction and Mcbusted live on Saturday!!!

This is the mask I will wear whilst i have radiotherapy.

As always, thank you for reading

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Day Of The Living Day

Hiya :)

I hope you all had a great halloween! I did, I spent it with my friends in my house having a Chinese we didnt dress up or anything like that haha, but it was a good night, I especially bought some halloween sweets and made cupcakes because I am a great friend! :P (I love making cupcakes)

Last Saturday it was Day of the living day!!! me, mum and dad went to exeter to do the stall me, Kirstie Tancock and Liana Tolland organised, it was a busy day and it was a special day for all of us who's had transplants to remember our donors that saved our lives. we sold quite a lot and had dancers, they all had they're face painted as sugar skull, and so did me and Kirstie. Liana couldn't come unfortunately because she was in hospital. But it was a brilliant day and we raised £412 BUT!! we are still selling some things and we have raised an extra £100 so far! and we signed up 14 people to become an organ donor!

Of course i wouldn't do a blog about organ donation without trying to get people to sign up.. so please do it, I wouldn't be here now if it wasn't for my donor and their family, if you read my blog and if you know me, then you obviously know that i have changed so much for the better! so sign up just by clicking...here!

Here are some photos of the day...

Against the sign with dad :)

Kirstie Face Painting 

Me and mum with my sugar skull face paint.
Done by Kirstie

Me and Kirstie

As always, thank you for reading

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Day Of The Living Campaign

Hiya.

On the 1st november from 10am Me, and members of the LLGL team who is Kirstie Tancock(who had a transplant the same day as me) and Liana Tolland who had a kidney transplant due to having an allergic reaction to malaria tablets while volunteering in Uganda, are doing a pop us shop in Exeter, South Devon somewhere in princesshay, for our new Live Life Give Life Campaign: Day Of The Living, this is a campaign celebrating people saved by organ donation and the generosity of their donors. Inspired by the Mexican Day of the Dead, in which ancestors are remembered with a vibrant and colourful festival, the Day of the Living campaign will raise awareness about the importance of organ donation with the same energy, optimism and joy. At our stall we will be selling skull bracelets, necklaces, rings, lollipops, cupcakes, cookies, hanging decorations, canvases, there will also be a chance to get your face painted and have a henna tattoo, a dance crew will be there and entertainment! I'm really looking forward to this campaign and especially the 1st november, so everyone please put the 1st november in your diaries and come to Exeter, princesshay from 10pm onwards. :) 


Looking forward to seeing you all there! 

speak soon!

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