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!!

As Always, thank you for reading

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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.

As always, thank you for reading

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The Downfall

Hello

 My last post ending in that I hoped my lung function wouldn't drop again, well it did and then GOSH wanted to see me, so we went up and we saw Paul this time and they didn't know what was wrong still

so he said the best thing to do was a Bronc and Biopsy the week after. I had the Biopsy and it came back with no rejection and no infection, they decided to carry on with my Antibody Rejection treatment  because i still have bad Antibody rejection(they find this out through a blood test) A couple of days before, Great Ormand Street rang and said i needed to have a CT scan again to see how my lungs are.

 When we got there I went for my CT scan and then Lung Function which is still not great. After, Helen came to talk to us and said she had looked at the CT and i have some pretty bad scarring on my lungs from my last rejection and that i will not get back to the way i was before, they only thing they can try and do now is make me stable, my antibodies are at 19,000. Next week i will go back to GOSH and have another treatment to try and get rid of them, which they will wash my blood out for 5 days, if that doesn't work then i will need radiotherapy, I am going to speak to someone about it maybe next week and if i do not need it(hopefully) we can just cancel it, it's better to talk about it now because it can take a while to organise. If the radiation doesn't work then theres nothing else we can try, a second transplant may not be the answer either because my antibodies are so high. But if we come to that we will deal with it as it comes. I will always be grateful to my donor for giving me these lungs because these past 20 months has been the best 20 months of my life and I hope to carry it on, I'm not going to give up! 

Please everyone sign up to be an Organ donor, it saves so many lives, click.. *HERE* if you want to sign up :)

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Wondering Why...

Boo!

Hello you lovely people! Hope you are all well :D well where do I start… I went up to Great Ormand Street on Thursday 19th march to have my Antibody Rejection treatment and because I wasn't feeling well either, I was getting breathless walking, so i explained all to Helen and she said i have an infection because my lung function was quite down. I was started on IV ceftazidime and oral cipro, went home that Friday after my rejection treatment finished and after having trouble with my picc line which decided to snap in half whilst taking blood haha but they fixed it after 6-7 hours of trying. I decided to go college on Monday but I was very breathless walking around and had no energy at all so didn't go for the rest of the week, my nurse has been coming around a couple times this week and my lung function keeps dropping so I don't believe it's an infection but of course I listen to my doctors. I don't seem to be coping very well with the fact that I'm getting very out of breath again doing things, it isn't as bad as before transplant but loosing lung function so quick and being use to being able to do things again to not being able to walk up the stairs without having a break half way through is hard. There are people much more worse then me and are waiting for a transplant and I know what that feels like so I really don't know why I'm moaning but I just wonder.. why? why all this again, I haven't really had a break from it since I've had my transplant, best thing that ever happened to me and i will always remember and can't thank my donor enough but it isn't always an easy life after transplant but the best thing to do is get on with it :) I'm doing my lung function again tomorrow and hopefully it hasn't gone down again, if it has we are telling GOSH and hopefully they will do something about it and i'm ready to fight anything that comes at me! :) 

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The Tarka Walk 2015!

Hello!

Saturday was the day for the Tarka Walk 2015 which was a sponsored walk me and my family organised and the money raised will go to Live Life Give Life, it was a great day and around 100 people turned up to do the walk, there was a raffle which had some great prizes, we've already raised about £1000 so far and we haven't had everyone's sponsorship money in yet! A few friends that has had transplants came down for the walk too, one of my best friends Jess Paddock who i have mentioned before, Emily Icke and Neil Capener, they have all had double lung transplants like me. I only managed to do half of the walk but that was more then i expected to do. Jess did the whole way and she is only 5 months post tx, i'm so proud of her! i wouldn't of been able to organise it without my Mum, Dad, Step mum and Austin Wallas who has helped my family a lot with the sponsored walks we have done! in the night me, Jess, Emily, Neil and friends went out for chinese before we all said goodbyes, Me and jess went to see Harriet on Friday and i bought her a lovely friend stone to put on her grave, it looked beautiful, Harriets parents and little sister came to the walk and it was hard to hold back the tears but i loved seeing them.

Thank you everyone who came to the walk and theres still chance to sponsor me through my Just Giving page please click..  *HERE*. We are thinking of doing a summer fete next year so i look forward to seeing you all there! for now i shall leave you to some photos of the day…

Emily, Neil, Me and Jess

Dad Holding the Organ Donation sign

The Lovely Jane Hoare and her friend Heather holding the sign

At the start line. 

Me and my gorgeous mum holding the sign. 

My Childhood best friend and her family, basically my second family.

Harriters parents Greg and Helen and her little sister Imogen 

One of my gorgeous nephews 

My other childhood best friend and Kim a friend of ours.

Emily, her friend and Neil behind her.

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Goodbye Reflux, Hello Sloppy Food

Hey!

I hope you are all well! After Disneyland I came to GOSH to have my Antibody-Mediated Rejection treatment which all went okay, I was attached to the IV pump for 12 hours and then was allowed home the next day but on the way home I became quite ill and started to get a headache and was sick, I got home and Helen rang and said my Tacrolimus level was very high so I was to miss that nights dose and change the dose in the morning. I was in bed for 2 days because I could not move as the headache stayed the whole 2 days and I would just be sick, I felt better after a few days but my appetite hasn't been very good since, I went to my friends and tried to forget about feeling ill but the morning I woke up and didn't feel well again but mornings are always worse, this was pancake day so of course I had a pancake or 2 :P

Last Wednesday I came to GOSH because I had my fundoplication on Thursday, I went to theatre at 1:00pm and came around at 5 o'clock ish in a lot of pain and had a NG tube down my nose, I basically slept for the rest of Thursday and the whole of friday(i do that after any anaesthetic haha) I got out of bed on Saturday to walk and it felt like Transplant all over again, I was dizzy my legs felt like jelly and I could hardly walk, I have to have a sloppy food diet for a while now, but I'm feeling fed up of it already haha! I'm going home tomorrow but decided not to go back to college until next week as i'm in quite a lot of pain where they did the keyholes to. 

A picture of what a Fundoplication is 

I'm back up at GOSH again in about 2 weeks for another lot of Antibody-Mediated Treatment, I will have this every month for a few months to hopefully say goodbye to these Antibodies! 

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Transplant clinic 28/01/15

Hey!

I had transplant clinic at Great Ormand Street yesterday and it went okay, rather good actually little bad news but.. lung function has gone up a little bit to 68% which is good, around a week ago it was just about coming up from 50% and weight has gone up! I'm on 20mg of pred now but still eating anything I see so my cheeks are like hamster cheeks! when I was discharged from GOSH 2 weeks ago they did a blood test to test my antibodies and the results came back positive for Antibody-mediated rejection in my lungs, so I'm going back to GOSH on the 9th February to start treatment for it, i'm still allowed to go disneyland next Tuesday which i am soooo excited for!!! I am feeling much better then I was when I was in GOSH and my walking has got a lot better, I'm still getting out of breath a little bit walking like up stairs and hills but most people get out of breath doing them haha! 

I will talk to you all after disneyland because of course i'm going to do a blog post about it!!

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Goodbye 2014

Hello!!

2014 was the year i started to live a normal life again, despite going into hospital a few times because of lung problems, it was still a great year. 

• I did my GCSE exams which wasn't easy because i missed nearly 2 years of school
• I left school
• I went to my school prom which i never thought would happen
• I went to see ONE DIRECTION!
• I went to Butlins with my family
• I was 1 year post Double Lung Transplant thanks to my organ donor
• I had my 16th birthday and party- 2 years ago i didn't think i would be here for my 16th birthday
• I went to Hungary with my dad for a week! 
• I met some great friends thats I've always spoke to online (Faith, Jess, Emily & David, Charlotte, Victoria and Vanessa)
• I've made amazing friends from college that i can call my best friends 

These things might not be a great big deal for some people but for me it is amazing! i say this a lot but i only did all those things because an organ donor saved my life! their parents/carers said YES to organ donation. loosing someone you love is the hardest thing that could happen but knowing that they saved someone else's life is a great thing! i will always be happy with my life no matter what happens and will never ever forget my donor. 

sign up and do the right thing, organ donation saves lives: CLICK HERE!

Update: the methylpred seems to have worked its magic and now i am on 60mg of prednisolone for a week and gradually bringing it down(i'm still eating loads!) my lung function has gone up to 64% which means i am going home tomorrow! after 4 weeks of being in hospital i am actually allowed home! i will be coming back up to GOSH on the 28th January for a quick check up before i go to DISNEY!!!! and i have my fundoplication on the 19th February! i am sooooo happy!! :)

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Happy New Year :)

Hello!

I hope you all had a great Christmas and New Year!! in my last post I said was in hospital but they let me home for Christmas and Boxing Day! :) It was lovely even though I wasn't feeling 100% and was on IVs, I was taken back into hospital on Saturday(the day after Boxing Day) because my saturations were low and it was really hard to breathe and my lung function dropped everyday, I was transferred to GOSH on the Monday and had a bronc and biopsy on Tuesday the results came back there was no rejection and no infection, we had no idea what was wrong with me, then I picked up a virus which meant everyone who came into my room had to wear a mask and I was isolated but doctors didn't think was the problem. I had a chest CT scan and that didn't look good at all so they decided to do needle lung biopsy, which I was asleep for(thankfully) yesterday I had the news that they found evidence that I have acute rejection, chronic rejection and antibody rejection, I am very shocked that I have all 3 but Helen my doctor said she will do her best to make me better again! I am starting very strong methyl pred tomorrow to hopefully treat it and make me well enough to go to Disneyland on the 4th February!

Thank you so much to everyone who has messaged me, I am very thankful to have great people in my life and always will be forever grateful to my donor xxx

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My Nightmare Before Christmas

Helloooo.

In my last blog post I said I had cold and a bit of a cough, well that cough got worse and I went to my first clinic appointment back at my local hospital and my doctor decided to admit me into hospital for 2 weeks! yes just before Christmas! :( my lung function has dropped and i am bringing up green mucus. I started IV Colistin and Ceftazidime, I've been doing some intense physio to get the rubbish off my lungs! I don't feel much better but the IVs are making me so tired and I don't have any energy. I had a Midline in yesterday(Saturday) I was awake when i had it done(I've never had one in a awake before) and I hated it, but I've been through worse! they tried to go for a PICC line but its wouldn't go around so they stuck to a Midline, i'm hoping I can go home for Christmas Day to spend with my family! The children's ward at the hospital is so christmassy i love it, but i would rather spend my Christmas at home :P 

But I hope you all have a wonderful Christmas!

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Winter Wonderland & My New Car

Hello.

Last Tuesday i went to Winter Wonderland with my dad, Tracey(step mum), sister and step brother. Me, mum and dad went last year but Tracey wanted to go this year and of course I would want to go! it was the same as last year but i think it's just amazing! I went on a fair ground ride with Tracey! :O I never go on rides but i really wanted to go on and I dragged Tracey on with me! :P I wouldn't stop laughing and she said a lot of swear words whilst on it! I bought my mum a pink candle for her bathroom(she loves candles) and I also bought some voodoo dolls. Wednesday we went to Westfield shopping centre(best place ever).

Thursday was the day I picked up my car from Truscotts, I have a new Peugeot 108, I have it on mobility because after transplant it is still a battle with walking and i still cant walk very far, I get so tired and another reason is that doctors advise you not to travel on public transport. My dad is teaching me how to drive until I'm 17 and then do some lessons with a driving instructor and hopefully do my test! well I've got to pass the theory first! I did my first driving lesson friday and it went really well for my first go ;)

I have a cold and a bit of a cough at the moment so i have been put on co-amoxiclav, hopefully this will sort me out, no one wants to be ill on Christmas Day!

Here are some photos..

 Winter Wonderland...

My Car...

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Emily Icke's 1 Year Transplant Anniversary Party

Heya.

Friday 5th December: Me, mum and my step dad travelled up to Aylesbury for a very special event! it was my lovely friend Emily Icke's SUPRISE transplant party! it was on saturday but we thought we would go up on Friday.

Saturday 6th December: It was a great night and when Emily came in she was so shocked and happy, and shocked that we were there! it was lovely to finally meet Emily and David(Emily's husband) i also met Charlotte Davies, Victoria Glen and Vanessa Bradley who have had transplants too! David organised it really well and every thing that was done was done perfectly! All the money raised will be going to 3 charities: Live Life Give Life, Cystic Fibrosis Trust and Royal Brompton & Harefield :) 

We are thankful to Emily's donor who saved her life, and will always be thinking of them and their family for making that decision. Live Life Give Life.

Here are some photos of the night…

Me and the beautiful Emily Icke :)

Me and Charlotte :)

Me, Charlotte and Victoria :)

Kirstie, Charlotte, Me, Victoria, Emily and David :)

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