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Thursday, 21 June 2018

Transition

It comes around for all of us, the paediatric services are no longer where we can be treated, life has moved on all before your very eyes. Transition is something that is a given, it has to happen.

If you are a young person facing the move to a new service, you may be feeling all kind of emotions. It may not really be bothering you, something that just happens, it is what growing up is all about. Others may feel worried about something new in your life, you've got your routine sussed in paeds, you have just got to the age where they really listen to you, you feel more valued with your words.

Parents, you may be worried that you will no longer be a part of the care process, you may feel like you cannot give up this responsibility, what will you child be like when they are no longer classed as a child in the NHS? You may feel a weight lifting from you, you no longer have to continuously monitor your child to report back to the doctors when there is a change.

Whether you are the tranistionee or the parent of a child who is transitioning, I hope you will be able to read this and start to feel okay about the process. It is so understandable to be feeling all kinds of emotions, it's change and change can spark a whole plethora of emotions.

'Your child is going to start the transition process' those words you think you will never hear (or not for a long time). The idea of moving to a new team can seem like it is many moons away. Parents you may not feel like you or your child are ready to move on but trust me when I say your team will not have suggested it if they did not feel your child is ready or without good reason to start the process.

With me I was 16. The younger side of the age range for transition which is roughly 16-18. My CF was getting very complex, I had just been diagnosed with Cystic Fibrosis related Diabetes and my health was declining. I didn't feel ready to move but I knew my team had suggested it because they didn't have the resources or knowledge to treat me to the best of their ability. They felt moving me to an adult clinic where their focus is on CF day in, day out was the best chance for me to get the right treatments I needed to progress.

My transition story isn't the conventional story. I know some people fill out the 'Ready, Steady, Go' packs but I never got the chance. My transition was less about was I ready? But more about you have to go to help yourself. Looking back it was 100% the right call. In the moment however, it felt like they didn't want to deal with my problems anymore. (That was not the case but as a 16 year old going through the stress of GCSE'S and picking A levels it felt like an impromptu decision).

I wasn't moving fully into uncharted territory. A consultant from the adult team had sat in my appointment with my paediatric team so there was a familiar face. I had also been to the adult ward to see where I would go as an inpatient and also got a chance to meet some of the CF nurses. They suggest these things to familiarise yourself with your new team. I found these things useful but didn't take them all that seriously in the moment as I keep saying throughout this post that it just doesn't feel like something that will actually happen. These things did actually really help when I actually transitioned over, it mean't some of the team recognised me and it wasn't like starting again. It was good for me to be able to visualise the place I was going to next, instead of having times where I could just wonder what it would be like and start to imagine something completely wrong about what it would be like, it allowed me to anchor myself in reality and truth, instead of letting my thoughts wonder.

I wasn't very well in between moving from one team to the other. I had to go and see the adult team because I wasn't very well, way before they got my letter of referral. They were very welcoming and friendly. They have dealt with this so many times they really know what you are feeling and how to make it easier for you and your parents.
I had to be admitted as an inpatient for 6 weeks. That is really how I got to know the team well because I was with them 24/7 for 6 weeks.

My first stay as an inpatient was strange. It was the first time I had stayed in a hospital on my own as my mum would stay with me when I had to go in to keep me company as paediatrics wasn't really geared towards youth. Your first inpatient stay somewhere new is going to feel strange. That's normal. It is a whole new system and place, new staff and new rules. It was odd not having my mum around to chat to or to just be with but it made me interact with the staff more. Not having my mum to lean back on made me chat to nurses and doctors in ways I hadn't. Seeing them not only as their role but also as who they are. Don't get me wrong, this did take a while and I hadn't perfected it in my first visit, but as time goes on it is something you get better at.

I also found my first inpatient stay was a shock to the system, they were asking me what tablets I took on admission and then if anything wasn't right or tablets were given at the wrong time I had to be the one to sort it out! This I had never had to face before, normally my mum would be right on top of it and sort it out before I even knew it was an issue. You again learn very quickly to do this, it is only you who can help the team improve their care and it is only you who can bring to their attention if something is wrong. They sadly aren't mind readers so won't know and I want to clarify that it is OKAY to point out if something is wrong or you aren't happy. I never once got a nurse who was upset with what I said, most of the time they were happy to be told because they are human and can miss something or do something that you aren't ok with. They don't know you as well as the team previous so it will take time for them to learn what you like and dislike but over time they will get better at remembering!

Overall, transition is something that is going to happen and shouldn't be viewed as scary. Yes, it will be a sad time but starting over with a new team can allow you to rewrite yourself if you want it to. Leaving bad habits and bad views of yourself behind (I am not saying there will be but I know there were some things about me I wanted to change for my new team). It is a time to grow and change, responsibility for your life and CF becomes yours solely.  They won't talk down to you, any treatment has to be given with your consent so if you don't like it then it doesn't have to happen. It takes time to adjust, it always will but I found the transition to adults a growing experience with my CF and really  allowed me to feel comfortable with my team.

For parents of a CF person who is nearing transition or are in the process right now. It will be a learning curve for you too. But don't feel you aren't a valued member of your childs team. Adults doesn't mean that you never have to sit in an appointment again, if you want to then you can! My mum always comes to my appointments with me. If you feel your child is unwell you can call and ask for advice, they won't put the phone down on you if they find out it is the parent calling. For you as a parent it will take a huge weight off your shoulders, for years you'll have been the one answering all the doctors questions, giving meds and making sure your child is ok. So maybe you'll still have to nag from time to time for your child to take their meds and do their physio but the doctors will be asking your child all the questions, they will be asked what medication they are on. The pressure is off for you now, it is less about how well you can look after your childs needs and more about how well your child can look after themselves.

Don't get me wrong adults won't expect you to be the perfect patient, life does get in the way and they understand that! If I can give one word of advice to anyone it would be just be honest. They won't judge you if you say that is too much or you wouldn't be able to cope with that. Be honest with how often you do your physio and things otherwise they won't be able to help you to the best of their ability. The thing I found different when going to adults is they help you balance CF with your life and they understand the pressures of adulthood and how CF can sometimes take a back seat. What I do feel sad about was I didn't get a proper chance to say goodbye to my old team.

Transitioning to adults isn't as scary or daunting as it is made out to be. I found the process to be hyped up to be something it isn't. You basically move from one dedicated and devoted set of doctors and nurses to another. What more could you ask for?

I truly hope this has helped by sharing my experience with you.
I am also more than happy to answer any questions on things I haven't touched on in this blog. (I know one of my questions was 'Can I still have numbing cream?' - The answer to that is yes!) via twitter or facebook (Patients and Parents).

I am not sure what my next post will be about yet, I am always after suggestions so do feel free to suggest a topic that you would like to hear about!








Thursday, 14 June 2018

Going away with CF

I've just got back from going on holiday. I went to Dinseyland Paris for a few days because I am still a kid at heart.
I went with one of my friends from uni so this was my first trip away without being with my family.

Having CF means you have to plan a trip in a lot of detail and you have to give it a lot more thought.
It is hard because things you see your friends doing like backpacking around the world is so much more difficult or near impossible (for me anyway). That's just something I have grown to accept and have learned that I can enjoy holidays and adventures in the confines of my limits.

The idea of going away without family is an idea of  having fun and experiencing freedom in ways you never have before. It is an opportunity for your confidence to grow and for you to grow as a person. However you must consider how you will fit treatments and the rigmarole of CF.

Going for a few days I first thought well maybe I could just forget about it and enjoy the holiday. But in reality that would not be an option, how would I enjoy my trip if I was constantly coughing and quite frankly feeling my chest just get fuller and fuller with mucus. It isn't a pleasant feeling or thought. So I was honest with my friend before we went and before we booked it. I said to her 'Look I have to do my treatments whilst we are away, it basically involves me inhaling some meds and then coughing up the mucus, if you aren't comfortable watching I can do it when I'm having a shower but I do have to do it.'

This leads on to my next point, having honest achievable targets, I knew that with the busy schedule of being in the parks all day the likelihood of being able to do my physio twice a day everyday was slim. I managed to do my physio once a day, normally when we got in and were winding down for the night. This is ok. Honestly don't get to stressed about this, it is important you do it when you are away but life happens and sometimes you just have to let that one go and start a fresh the next day. Also think of how you will do your treatments.  I had a plan that I would do my physio when I showered. I would take my hypertonic saline before hopping in the shower and then whilst I was washing my hair I would just do it in there. Luckily I didn't have to but I did have a strategy if I wasn't comfortable doing it in front of my friend or vice versa. I have come to terms with the fact some people may not feel comfortable watching and that just means they don't fully understand the importance but you should never compromise your health because of the opinions of others.

You may feel like taking yourself away and doing your physio on your own is a defeat, you shouldn't have to move yourself away or explain yourself to others. In part I agree, it should be ok to just be able to do your physio in front of anyone, it isn't your fault you have CF and people shouldn't make you feel like it is. This all comes in time, confidence and being ok with you and yourself really is an ever growing process. In a perfect world you shouldn't have to worry about it when going away with friends but sadly people lack the understanding to be fully accepting. If it is less stress at the time, take yourself away don't compromise your health just because of peoples ignorance. I would highly recommend talking to your friends after or during (if you can and it won't ruin the holiday vibe) about how that makes you feel and ask them to put themselves in your shoes. Hopefully your friends are understanding, like mine and just let you get on with it and don't take much notice to the process. My friend even encouraged me to do it when I was so tired one night so I did do it and was grateful she actually made me do it.

Another thing I found helped me, was when I went into the park I made sure I 'over-packed'. Things I didn't necessarily think I would need I packed just in case. Like my inhaler and spacer, extra creons, evidence of my CF, little hairbo packs in case of hypos. I was happy to have some sweets when waiting in line for attractions or walking around the park. I also had a copy of my CF because you never know when a CF perk could be upon you. In Disneyland this came in handy to be able to provide evidence to be able to skip some queues for attractions.

The main thing for me about going away was to be honest with the person you are going away with, don't try and sugar-coat CF. There were times I just needed to rest on a bench or go back to the hotel and my friend was totally ok with that and constantly checking in with me to see if I was ok, If your friend doesn't already know about your CF or a lot about it, it is worth having that conversation so you can be open and honest when you go away. If your friend is like mine and openly googled and researched CF beforehand you will probably be grand but not everyone is like that.

Feel free to message me if you have any worries or questions I may not have covered about going away via my facebook or my twitter - @itscicely

If you would like a blog chatting about my time in Dinsey I would be more than happy to do another post just let me know by either commenting below or message me direct.

Enjoy some pictures below of my trip!








Tuesday, 22 May 2018

First year is finished?!

I have finished my first year at uni.

This sentence doesn't seem real or true, I'm done, my first year on the way to becoming a practising psychologist is in the bag. Wow.

This first year of uni has been such an experience, learning to live independently away from home. Fully taking on the responsibility of my life and my CF.
It feels like it was only a few weeks ago I was getting stressed that I wouldn't get the grades to go to uni or to be able to decide what uni to even go to.

This first year has helped me grow as a person, it hasn't been without it struggles but I have come so far, I am able to chat to strangers I barely know and keep a conversation going, gone on nights out with the girls and had a blast and even been able to start getting good grades in my coursework. All have taken time and effort to get there but I finally made it. It have also seen a massive improvement in my health I have had no hospital admissions since starting uni (my last one was November 2016) and have had no intravenous antibiotics since March 2017.

If you have CF and are wondering about university I would say go for it. Enjoy your time but also respect your CF and the needs that will have to be met to thrive at uni. I'm not perfect I do not always do my treatment everyday but I do make sure I rest and exercise well. I make sure my CF does get priority with time but I also make time for a social life and doing work. I don't go out every week or party to the early hours but my social life is what I enjoy (it doesn't have to be what everyone else enjoys!!). You'll find like minded people at uni and sort of gravitate towards them, my closest friends aren't massive party goers but we find our own way to enjoy uni.
Uni is about having fun and in some respects going out with your mates but you don't have to go out all the time, people understand that everyone is different and some people just don't like going out (it doesn't mean they aren't as fun or don't enjoy a good time!). So if that is one of the things that is worrying about uni - don't let it!!

To finish the year I went to the summer ball where Scouting for Girls were headlining. It was a really lovely night and such a great way to finish first year with all my lovely psychology lot. I'll put in some pictures below!










Now to enjoy the summer and come back ready for second year refreshed and energised!


Tuesday, 20 March 2018

Hey all.

So to put off writing my essay which is due soon I decided to update you all with my life.

2018 has already marked some milestones,

I turned 20, I'm finally out of my teen years (Yay?!). I look back on my teen years with fondness (mainly). I'm glad of what I succeeded with my GCSE'S, AS& A-levels. I made some wonderful friends and starting uni was a massive achievement for me. I am grateful I have had the opportunity to turn 20 as many in the CF community aren't as lucky. I am however happy to get that stage of my life out the way, the rebellious side when it came to my CF and the idea that I thought that as I wasn't that bad with it, I didn't need to do the treatments that were asked of me.

Every teen goes through it, I wasn't rebellious in other aspects of my teen life, just my CF life. I suppose it was because I hadn't fully come to terms with my CF and also because no one else I knew had it and it made me feel different. I look back on those times with appreciation, the process of rebelling has now given me an appreciation of my life WITH CF. Having a dip in my health at around 15/16 showed me that I wasn't invincible and that in fact my CF was more in control than I thought. This blip made me buckle up and become more adherent with my treatments. Without my teen years being the way they were I don't think I would fully appreciate how far I have in fact come.

This comes to another milestone in my life, a whole year without IV's!! What a shocker that was. I never imagined I would get to this milestone again (I only have achieved this once previously, which was in primary school). It has shown me my health has dramatically improved, I'm not so reliant on antibiotics as I once was and trust me I used to be a regular at the hospital (when I was in paediatrics I actually watched the accommodation I live in now being built, how crazy is that?!). I can only thank the team and myself for this achievement. My team has helped me realise how important treatments and exercise really is. I've been a regular in the gym now for three years and it's really been paying off. Though I haven't seen improvements in my lung function, these other measures show me my health is actually a lot better.

I also had my annual review in December and will have my feedback on that in April (again - the longest I've been without an appointment before). Hopefully everything with that will be good, nothing drastic has happened and I've remained stable so I can't imagine anything bad being raised.


I'm nearly at the end of my first year of university and I've really enjoyed it, I've made some great friends and memories. I just have a few more assignments due and then exams in May and then I'm done!! It's crazy how fast it's flown by! I'm planning on doing some work during the summer as an ambassador and volunteering.

Then onto second year where it all actually counts but I am confident I can succeed, I've done it in my health now I've got to just apply it to my studies. I am hopeful I will achieve what I need to go onto my postgraduate study and beyond!!


Here's to my 20s!!



Sunday, 31 December 2017






Today being New Years Eve I've decided to do a look back of my year.
This year I've come such a long way and believe it has been the best year for me health wise in a long time!

My health as been pretty good this year, I have only had one lot of IV's being in March and I managed to get them to be home IV's so I haven't actually been admitted to hospital at all this year!! It's been a very long time since I have managed that. 
In March I wasn't very well, hence the IV's but I was actually considering doing a fourth year at my sixth form purely because I had missed a whole term of school and didn't think I'd get the grades to go to University, thinking I would have to put off Uni for another year. I didn't know that my luck would change very soon, and being given an unconditional offer from my first choice uni was just around the corner.

It was such a relief to be given the opportunity to go to university, when times looked bleak. A massive weight was lifted from me and knowing that I was going to university allowed me to focus on my health. 

In September I started uni, it was a massive step for me. I have thoroughly enjoyed my first semester at uni, I've managed to adapt to my new way of learning without jeopardising my health. My CF is stable. My annual review in December confirmed that. I'm doing well and that all I could ask for. My attendance at uni has been 100%, an unlikely thought. I never thought I'd see my attendance be that, especially being freshers and having freshers flu around.
My consultant was very positive with the progress in treatment for CF. And told me should will retire when CF is cured.
This gave me a lot of hope for the future, I've just got to make sure I carry on being stable until the right treatment for me becomes available.



Saturday, 9 December 2017

Finishing my First Semester

Hi!

I'm nearly at the end of my first semester at university. One week to go! I am proud of how far I have come.
Whilst university might not have been the easiest thing for me and my CF, I've managed well.
Yes, my weight may have dropped a bit, this is due to the fact university was a massive change for me, my anxiety was high for a good few weeks and if I stop my eating habits for a while I do find it hard to pick it back up. However I have acknowledged this and have sorted out with my team to restart my appetite stimulants. Luckily I have this as my safety net to help me get back into my old eating habits, after being on them for a few weeks I'll be as good as new!

I also got my first job! I'm a student ambassador for the university, this is good for me as I can pick and choose when I work and am not committed to a certain amount of hours a week - plus the pay is good too! I'm really looking forward to starting this role in the new year!

The one thing I am most proud of is that I have not had to have IV's this whole semester, I honestly thought I would have to have at least one lot of IV's this time round as starting in a whole new place with completely new people, I thought it would be a given. But I have actually managed to avoid IV's and going into hospital. I'm so happy about that, to me it shows that my body is a lot stronger than before. All my flat have been ill too but I've managed to stay clear of it all! It might have been just luck but I'm glad whatever it was!

It's been quite challenging writing essays in a specific style, it's hard to know what the markers want from them, I have spoken to some of my markers of my essay and they have told me that they aren't worried about me and then they think my style will improve in the upcoming essays - which is positive as I was worried about that as it's such a big leap from A-levels!

I'm very excited to be on holiday soon but I'll also miss my friends at uni and my flatmates, luckily some of my friends live close by so I want to meet up with them during the holidays. I am looking forward to just chill out with my family and watch films, I'm literally not going to be doing much this holiday but that's just what I need. This semester has been so hectic and busy and it took a while to get into the swing of things, I am definitely feeling it now and would just like to have a long sleep and get rested and having a month off is a bonus too!

Luckily I have looked at next semesters timetable and even though it looks busy I don't have any 9am starts which is good for me because these last few 9am's have been very hard to get up for.
I'm looking forward to some of my modules next semester especially 'Introduction to Psychological Disorders'

I don't know when I'll post next, maybe when I have started the second semester, so if I don't post before Christmas, Merry Christmas - have a good one!!

Wednesday, 8 November 2017

Its been a while!

I've decided to resurrect my blog and let you know how things are going with me.

I started university in September this year, I'm studying Psychology. University has been a massive learning curve for me, learning how to be independent, cook, clean, take meds, socialise, do essays. Trying to fit this in on a daily basis has been tough.
The whole going to university was cystic fibrosis, has been a hard one to figure out, it was hard to know how I would manage the university life, how my flatmates would be, how demanding the course was and when was I gonna get the time to do the next treatment? I knew the first few weeks were gonna be a juggling act to see what would work and what wouldn't, I found that it's not going to be possible to do your treatments twice a day every day, it's okay to do it once a day you just have to be kind to yourself and know that you are doing it, I also knew the gym was going to be very much part of my university life and that I had to schedule into the day even if I had only managed to do my physio once I knew that I would be doing the gym and therefore I didn't have to feel as guilty as I normally would. It's very different trying to get your head around the city, I know my lungs haven't adapted well to the pollution of what the city has, but my university is very hilly so I feel that even though my lungs may not like the new area in I am working them up the hills every day so therefore it will benefit me.
But why did I choose psychology? This was quite a change from my original degree, I really wanted to go into medicine that I wanted to be a doctor and help people in the ways that I've been helped and just be able to give back, then my health declined a lot in 2015 and it was advised  that maybe going into medicine and being in hospital where people were ill was not the best place for me to be. I understood this and even though it was hard to have to accept that I wouldn't be able to really do a degree that I wanted to do I did look into doing biomedical sciences, but I found that biomed was a very competitive course to get into, and also it had high grades which I knew I wasn't going to get. When doing my A-levels I did biology chemistry and psychology, I did this combo because of the whole going into medicine – but in the end the only subject I enjoyed was psychology. I decided that this should be the degree to do as I really enjoyed it and it didn't feel like a chore to learn. I'm very interested in forensic psychology and the criminal mind and this is the area that I hope to specialise in. I got an unconditional offer from my first choice uni, which took the stress of getting the grades away and mean't I could focus on my health and revise if I had time.

Whilst university has given me the opportunity to get a degree and study a subject I love, it's made me have to prioritise my health above everything else.
I have made some great friends at university, very like me. It's nice to be part of a group that is so accepting of your medical condition, the first week freshers one of my flatmates sat with me whilst I did my physio, I'd never had anyone do this before so it was quite bizarre but then I thought myself I shouldn't have to worry about this because this is who I am I have to do this to stay well. The fact that my flatmates don't mind and want to sit with me whilst I do it as a bonus.
All I can say is I don't have a party flat, my flat hasn't been out for about three weeks now we are normally in bed by 10 o'clock. This is so good because they are so chilled and it's nice to be with similar people who can't always go and party and who do want to focus on getting a good degree.
My general fitness routine has greatly improved since starting university, I try to go to the gym once a day even if that is for half an hour. I started going to yoga classes once a week which has been very interesting, I bent in ways I didn't think were actually possible but I have seen the benefits – my breathing is a lot better and I do like having an hour where I can relax and chill and not think about what essays need to be in, preparing the next meal. It's nice to have a break from a hectic schedule. I just don't know how people party on top of it.

My CF has recently been behaving itself, although that can't be said for all of the time that I've not posted on here. I was admitted to adults for two months, I was very poorly, I was under way below functions and grey it all wasn't brilliant. I miss my first year basically of six form and it was tough didn't really make new friends and that was hard for me but I restarted my year and made some lovely friends and was a lot better. As I grow bug called mycobacterium abscesses, and as many of you in the CF community know this prevents you from having a lung transplant this was the first time I heard about it when they moved over to adults. So there not knowing that now I do not have another option was quite scary to start with but then I realise that that meant that I had to keep as well as possible because I don't get the chance to have a lung transplant. This really changed my mindset I was a teenager who didn't really want to do the physio, when I was in secondary school I didn't really do my treatments as much they should have and obviously I regret not doing that but I don't think I wouldn't have not gone through that stage. I think it's a massive part of growing up and I've spoken to many people with CF and I know that they go through the same thing, because it's hard not being able to meet with the friends with this CF and I know that the CF community online wasn't as prominent as it is now when I was growing up in my early teens and if I'd spoken to someone I'm sure I would have taken on board what they said and but I can never really be sure and the only thing I can do now is just make an effort and take every day and that comes. There will be some days when I feel like I can't be bothered and why have I got CF and I don't really want to do my treatments I can't fit my treatments in, but if I do have a day like that I will always reflect on it and I will always say to myself tomorrow you will do your treatments, tomorrow is a new day.

At the moment my lung function hasn't really shot up as much as I would have hoped. Putting on weight and going to the gym I thought my lung function would play ball and it would improve like the research has suggested that if you have a good BMI and you exercise you lung function would increase even just a bit. But no, my CF decides it doesn't want to do as it's told, my CF doesn't want to improve in the ways that I would like to see. This didn't mean that my lungs weren't improving just  the numbers weren't showing it, I had a CT scan done last year and they compared it with my paediatric CT now the difference between the two sets were very noticeable my most recent one was so much clearer I had less plugs of mucus and more space where was, now this didn't show in my numbers. To me I saw my numbers aren't going up meaning I'm not getting better, the doctors were very pleased with my CT and due to the progressive nature of CF it's very rare to see not only stopping the progression of CF but also to improve the lungs is very hard to achieve.
Even though my numbers weren't improving the fact that I did feel better in myself didn't mean I was making that up it just meant that lung function wasn't the best way to test my health. Lung function is a very small aspect of overall health, but for CF and the CF team and a lot in the CF community it's something a lot of us get very hung up on. I see countless posts of people showing how much they've achieved how high their lung function has gone, I also see a lot of people asking how to improve their lung function, and don't think that I didn't do that because I did. But numbers are only one way to measure your health. Sometimes getting too hung up on something will impede your view of how you are, I know I can climb more stairs than I ever could before, I know I can run in the gym for a longer amount of time that I could, I know I can walk up hills that I didn't think I could, and yes some of these things may take time and yes you may be slower than other people they doesn't mean you can't do what everyone else can do and your numbers do not define how ill you are.
I'm doing a lot better now, I'm not so worried about the whole no transplant thing because at this moment in time there is no way I need a transplant and I hope to go on like that for a very long time and I plan on doing that by making sure I exercise and I do my treatments when I can.