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Showing posts with label Cystic Fibrosis. Show all posts
Showing posts with label Cystic Fibrosis. Show all posts

Rest In Peace Katie-Marie Gammon

Saturday, 14 November 2015

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.





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20/08/1998 - 23/08/2015

The Journey Continues

Friday, 24 July 2015

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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A Happier Post :)

Wednesday, 27 May 2015

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

As always, thank you for reading
Speak soon
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Cystic Fibrosis Awareness Month

Tuesday, 5 May 2015

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* 







As always, thank you for reading,
Speak soon
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Wondering Why...

Sunday, 29 March 2015

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! :) 


As always, thank you for reading
Speak soon
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The Tarka Walk 2015!

Thursday, 12 March 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.



As always, thank you for reading
Speak soon
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The Beautiful Harriet Sheehan

Sunday, 1 February 2015

Hey guys!

I know I said I was going to do a blog post after Disneyland but today the CF community had some very bad news that Harriet Sheehan passed away this morning, she was the kindest person i knew, she would do anything for anyone even though she was battling with CF, she was in hospital since june last year trying to battle against CF! before Harriet died she had a wish to meet one direction and it came true, which i was super jealous about but I was so happy it came true for her, she was one amazing girl, everyone with CF is amazing and strong and if I didn't have CF then I wouldn't be the person I am today. We are all so lucky, I'm lucky because I had my second chance, Harriet couldn't get on the transplant list because of reasons. We are lucky to be here with our families, some people take life for granted and they don't realise just how lucky they are just to breathe. Harriet was too young to be taken away from us all. I will never forget when i would walk past her hospital room when we were in the same hospital and see that big smile she would give me and say hello! I am thinking of her mum, dad and little sister at this sad time. Harriet is no longer fighting and can breathe easy, Rest In Peace beautiful xxxx



As always, thank you for reading
Speak soon
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Goodbye 2014

Thursday, 15 January 2015


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!! :)


As always, thank you for reading
Speak soon
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Happy New Year :)

Friday, 9 January 2015

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



As always, thank you for reading 
Speak soon


My Nightmare Before Christmas

Sunday, 21 December 2014

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!




As always, thank you for reading
Speak soon
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Emily Icke's 1 Year Transplant Anniversary Party

Monday, 8 December 2014

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 :)


As always, thank you for reading
Speak soon
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Meeting Faith :)

Wednesday, 29 October 2014

Hello.

Yesterday(28/10/14) i met my closest CF friend Faith, we have been speaking for over a year on Facebook, texting, we never spoke to each other on the phone or went on Face time, but she is like my best friend, Faith is the same age as me and we went through GCSEs at the same time, so it was really good that she understood because she was doing them as well. i can speak to her about anything and i can always count on her when i need to talk to someone. anyway… yeah yesterday i met her for the first time and it was a really good day, Faith came to my house and gave me my birthday present which is nearly 2 months late :P she got me a Lush(bath stuff) birthday gift set! We went to Pizza Hut and then went into town and me and Faith decided to get our ears pierced, well she had her first holes done and i had my third. After a while, me and Faith was saying that our feet were aching so we came back to my house, ate some cupcakes and then my sister Louise decided to join us and meet Faith and Kerri(Faiths mum), they went home about 5:30pm. Then i went to bed to watch The Vampire Diaries and i felt really tired as it was a busy day. But overall it was an a wonderful day and it was lovely to meet Faith and Kerri, next time, me and mum are going up to theirs :) 



We had lasagna at Pizza Hut

My third holes done!



My Lush set :)


As always, thank you for reading
Speak soon
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