Rest In Peace Katie-Marie Gammon

Hi everyone,
It is with an achey heart i write this blog in honour of the inspirational Katie-Marie Gammon. I am Katie's sister Louise and i will be continuing Kates blog. As a family we are still eager to campaign and raise awareness for organ donation and Cystic Fibrosis.

Im sure by now you're all aware that Katie lost her battle of 17 years on the 23rd August 2015. Even in her death Katie shown her courage and bravery. After being told on her 17th birthday (crap timing we know) that there was nothing that could be done for her and it was time to go to end of life care. Katie had caught a fungal infection that revealed itself to late and had already destroyed the rest of her lungs and no treatment was treating or even slightly improving it. As you will have read on here previously, Katie was also battling antibody rejection which had also dangerously damaged her lungs. She was having radiotherapy to kill the antibodies in her body but Katie's body didn't take kindly to the radiation. Radiotherapy was then stopped. Katie spent the last 6 weeks of her life in Hospital trying to find the cause to her deterioration. After two weeks on Caroline Thorpe ward she was blue lighted to Great Ormand Street Childrens Hospital where she had an emergency bronc and biopsy. There were some complications and Katie ended up in PICU. We were then told it looked like rejection so Katie was treated for Chronic Rejection, Katie improved a minimal amount and was transferred back to bear ward for a couple of days. Katie again began to worsen and suffered massively. Back to PICU we went and Katie worsened each day. She was needing lots of oxygen to maintain Sats barely in the 90s. It was then we were told the next few days were crucial and we needed some sort of response to all treatment as it was in fact infection not chronic rejection. No improvement took place and Katie was shattered. At this stage she was just sleeping and struggling to breathe. Then our worst fears were confirmed. As a family we had choices to make. Once Katie accepted her destiny she took charge and wasn't going to go on anyones terms. She told us who she wanted to see before she died, things she wanted people to have, messages for us to tell people, how and where she wanted to die and her funeral arrangements. At  first Katie wanted to be transferred to our local children's hospice to pass away. Although we were told Katie might not make it home in the ambulance we still wanted to take this risk as we knew our Katie was a fighter and would hang on. We made it to our local hospital children's ward which was what was suppose to be for two days then to be transferred to the hospice. As soon as we arrived on Caroline Thorpe Ward they took us to the room she always stayed in. The staff the night before when they heard what was happening only went a brought decorations for Katie and made it lovely and homely for her. Katie then said I'm not scared here and i feel safe now. It was then Katie asked if she could die in Hospital where she knew everyone. All the staff were amazing and did everything possible to make her last days comfortable. They made it all about Katie and her decisions she told them she didn't want to suffer any longer so all treatments were stopped. It took a while to balance the right amount of drugs to make her comfortable but they did it and when they did she was peaceful and no longer struggling. The last thing Katie told us before she began end of life treatments was that she loved us all. On sunday 23rd at approximately 3.20pm Katie took her last breath and went to sleep with the angels. She went peacefully with her family by her side. Katie was laid to rest on 07/09/15 with a full church! It was a beautiful service and everything the way Katie wished. We miss her every passing second and we know this pain will never go away. Breathe Easy our Angel <3

Thank you to Katies Donor and Donor family for being heroes and allowing us two more years with our amazing girl. In those years Katie felt more alive than she had ever felt her whole life and she managed to do things we thought she never would! Thank you from the bottom of our hearts. Please everyone think about joining the organ donor register.

20/08/1998 - 23/08/2015

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!!

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One Direction, McBusted & My Friend Emily xx

Hello Everyone!

I hope you've all had a lovely weekend! On Saturday I went to Cardiff to see One Direction On The Road Again tour and McBusted were their open act whilst they were at Cardiff. Dad drove me and Olivia up there, we was worried as the day before there were 45 mile tailbacks but thankfully it wasn't too bad but the seeing 1D and Mcbusted live one word.. BRILLIANT! It was so good! this is the third time I've seen 1D now and it was by far the best time! It was even better that I had Olivia with me because I could scream as loud as I wanted as I knew she would as well haha! 

I can now tick off that I have seen McBusted live on my Bucket list! I've wanted to see them since they became one band but every time they've had a tour I've been to unwell to go! so I was very excited to find out that they were One Direction's opening act in Cardiff! they sang Year 3000 at the end and literally everyone was singing along to it and it was such a great atmosphere!

Tomorrow I start Radiotherapy and I'm starting to get really nervous but you have to think positive in these situations! the trial run went okay last Friday so I'm sure it will be just as okay as that was.

I've heard some devastating news about my friend Emily who I've spoke about before, she has took the brave decision to stop her treatment, she cannot keep being in pain and suffering! please can you keep Emily and her family in your thoughts at this very difficult time! I first met Emily at her 1 year transplant party, she was so happy and smiley, made everyone laugh with her humour, she is so loved my lots! She came and walked The Tarka Walk 2015 even though she had rejection, that was the last time I saw her. I will always remember her big smile, she was smiling even though she was going through so much. Emily said to me that we will fight this battle together but knowing that Emily will no longer be in pain and suffering has made me cope with it a little easier but it will be so hard to see her go. I hope we meet again one day Emily, I will keep our memories close to my heart forever, I love you.

Here are some photos of Saturday… 

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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.

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A Happier Post :)

Hiya!

Hope you are all well? :) I'm still waiting for find out when I start the radiotherapy which is annoying but at the same time I am a little happy about it, I know that sounds weird but at the moment my lung function is stable and if it stays like it I would rather not have the radiotherapy for as long as I can because I want to enjoy next month, I have a busy month and I don't want to be so tired that I have to cancel it all, I know it's so important to have the radiotherapy and of course I will have it but I want to be able to have a good time whilst I am feeling ok :) 

Yesterday Faith and Kerri came to visit because we haven't seen each other since October last year! we went to pizza hut of course had a massive catch up, it was lovely to see them, we are going to see them again in August because we're going to a friends wedding, which is exciting!

Next month I have my English exams on the 2nd and 10th, I'm going to see one direction live on the 6th with Olivia, Mcbusted are supporting them which is so cool! not sure how its going to be without Zayn in the band though but I will still love them! I'm going to Butlins in Minehead with my family and I am also going to Oceanfest with friends which is a festival near where I live in Croyde. I'm so looking forward to being able to enjoy myself again, I haven't really been doing much lately, revising for my exam and I started watching The Vampire Diaries again! it is a must see! it's so good, so if you haven't seen it yet then you need to watch it! well thats if you're into the whole vampire thing haha.

At the moment things are going okay, I'm not too nervous about the radiotherapy yet, I think it's because I haven't got a date for it. I do know that I'm not looking forward to feeling rubbish whilst I have it but if it helps then I will fight the tiredness!

Me and Faith <3

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Plasma Exchange Results

Hey Guys,

I had the Plasma Exchange(washing my blood) on the 27th April for 5 days, I had the line in my neck and when it came out, it was one of the worst things I've experienced and I hope I never need to have one again. The machine was smaller then I thought it would be and I didn't feel anything whilst it was happening which is good :) my sisters came up to stay for 2 nights so it wasn't so boring haha! Also my friend Ella, who has had a heart transplant came to see me on the Thursday, she gave me some lovely gifts! I went home on the Friday and I'm trying to do something everyday even if it's just going for a walk, i don't want myself to get worse or my lung function to go down because I'm not doing anything. 

I had transplant clinic yesterday and I got the results from the Plasma Exchange… my antibodies have gone from 19,000(before the plasma exchange) to 7,000 so it has helped but my body is still producing antibodies so I will need to have the radiotherapy to help kill them so they will not come back, we hope this will work! I also saw both my CT's the one just after Christmas and the one a few weeks ago and I saw the scarring I have. It isn't the best news that I need radiotherapy but I'm really hoping this will work and finally keep the antibodies away! My lung function is still the same and Helen said it won't go up anymore so hopefully I can keep it stable. 

I would like to say a big thank you to the people who have messaged me! it really does mean so much to me that I have a lot of support :)

Also please can everyone say a prayer for my beautiful friend Emily who I've mentioned before in my blog posts, she had a double lung transplant in 2013 too and now has chronic rejection, she is fighting for her life. I know she will get through this! she is one strong lady! <3 

some pictures of the machine…

The long rectangle bag at the back is my old plasma,
the two smallish ones on the right is the new plasma
i had 6 bags of these.

one tube for blood going out
and one tube for blood going in.

The blood going through the machine.

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Cystic Fibrosis Awareness Month

Hiya!

May is Cystic Fibrosis Awareness month… I did a post about it last year but i'm going to do a post about it every year! 

As you know(if you read my blog) I have Cystic Fibrosis, it is a genetic disease which effects mainly the Lungs and the Digestive System. The lungs will fill up with thick and sticky mucus and it is difficult to bring it up so it makes it hard for us to breathe, we also get infections in our lungs so we need IV antibiotics to help with the infections. We have to take medications, nebulisers and inhalers and also do physio twice a day, take creon every time we eat so it will digest our food for us, it's hard to gain weight so some people may need a feeding tube to help them. Eventually you end up having CF Related Diabetes. There is so much we have to take on in our lives to just stay alive, unfortunately there is no cure for CF.. YET! I really hope one day there will be, we need to make as much awareness as possible for this horrible illness!!! 

When I was born the doctors told my parents that the life expectancy was around 13 years old, in my case this was true because i needed a lung transplant when I was 13! and if I didn't get the transplant then i wouldn't be here now. I've lost a few close friends to CF and it brakes my heart every time I do, even if i do not know the person I get upset because every CFer means so much to me. There's 1 good side to CF which is that I have met some amazing friends in my journey with it! it's so good to know people with the same illness because they know what you are going through so you can talk to them!  

Each week 5 babies are born with CF and 2 people die from it and there are more than 9,000 people living with CF in the UK. If you would like to donate to the CF trust or do some fundraising to help raise money for a cure then please click on this link…*Cystic Fibrosis Trust* 

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