Part 6... the end of these parts!

This blog is going to be the blog that brings us up to date on where i am at now. There is gonna be a bit of writing and then some pictures to finish off at the end!
Thank you for all the likes and shares on Facebook and twitter.. i have had so many people say they have signed the donor register after just forgetting to do so and even some changing their minds completely and agreeing they would want to donate organs if possible.
This blog is my diary entry really, i'm very honest in what i write and i do that for myself mainly. It helps me get things off my mind and chest, it helps me remember things so i can look back on the memories but it's also now spreading awareness of Cystic Fibrosis and Organ donation and that's thanks to everyone who shares my posts or talks about this blog to family and friends.
The last post and also this post have touched on what could be classed as negative views or opinions as a comment or two that has been deleted have mentioned. I just want to clear up that like i said before, this is my diary and i want to be honest and open so when i talk about feeling down or anxious.. that was how i felt at the time and it was part of my transplant 'journey'.
I thought i was going crazy during those times and so when i came to writing these blogs after getting some messages from a few people awaiting to be assessed or on the list for transplant i felt it was best for me to give a full account of what happened to me. Although we won't go through the same things as everyone is different and has a different experience through transplant, if they happen to have these feelings, i hope they know, "i'm not a doctor".. but you are not going crazy.. these feelings are so very normal after all you've been through and it is okay, it does get better but make sure you talk to the right people who can offer support and anything extra if it's needed.
Thanks again for reading and sharing!
On with part 6....

The first thing i did when i got home was have myself a lovely hot bubble bath of course! It had been a very long time since i had been able to have a good soak as all they have on the ward is showers. So i ran my bath, soaked in it till i was wrinkly like a prune and then put fresh pyjamas on ready to get into my freshly made bed. Clean bedding on, new pyjamas on and very tired eyes.. on February 17th 2015 i slept like a baby in my own bed for the first time since November 13th 2014!
Whenever people asked what was first on my agenda in my new life; two of those things were the dentist and getting my beautiful new car which had been waiting for me to collect from the garage since the end of November!
As for the dentist, i was adamant i had a hole in my tooth so it was the first thing i planned to do! I'm glad to report that my pearly whites are just fine! Finally it was time to go pick my car up. I had chosen a cherry red Mini Cooper Paceman with black mirrors and roof. On arriving at mini, they had presented me with a special plaque on the wall and when i opened the door to my new car, the lovely people had given me my very own mini british bulldog teddybear to take home in the passenger seat! It was a gorgeous drive and i love my car very much so! I named my car Paul after one of the main ECMO guys on ICU!

I had kept it to myself, family and close friends about my transplant. I just wanted to get myself through it, keep my head down, work hard and get settled into home life and the new life i was gonna lead before informing everyone on social media. When i did log back into my Facebook accounts i had so many messages off the people who did know about it that i more than likely didn't get round to replying to everyone but thank you to everyone who did send messages of love and support, it was gratefully appreciated by me and my family.
After a week of being home and settled, i posted this post on my Facebook.

It wasn't too long after this that my best friend emily and my cousin paddy told me the best news!!
They were expecting a little baby but not only that, they wanted ME to be a godmother to the little jellybean. I was thrilled for them and super excited to be a godmum again.. now i was well enough and more able to do things, it means i can be a real good godmum and take them places and do things with them instead of them having to visit me in a boring hospital room!

A text off jellybean after his first scan

To celebrate the good news in our lives, me having new lungs and emily having a baby, we scheduled ourselves in at a spa to have the massage we had promised ourselves since our birthdays the previous year. When we arrived, we filled in the obligatory forms and then slipped into our robes and slippers. It was then that the therapy ladies popped our bubble by telling us with me only being a couple of months post surgery and emily being pregnant we couldn't have the full body massage we had been longing for nearly a whole year!! Instead we had to have a facial which was very relaxing and my face felt beautifuly soft afterwards but lets be honest.. it's not an hour and 15 minute long full body massage is it!! haha.
Next year em? :)

I had booked tickets to go for afternoon tea and watch a show at the local coliseum for my nan, auntie  and cousin for her christmas present so we went with nan in our hearts and had a great time! I think she would have loved the afternoon tea but the actual show may have been a little too crude for my nan's liking!!

the afternoon tea reservation

Weeks flew by and before i knew it, it was Easter.. time for a family trip to Blackers!!
Last year we went but stayed in a caravan and i had oxygen delivered, we took my wheelchair and i was pushed round with my oxygen on the whole trip. We all had a brilliant time but to go back this year, without oxygen deliveries, without wheelchairs and no NIV.. it felt incredible.
We stayed in a lovely hotel this time round and we shopped, we walked and we went on the pier but my personal favourite blackpool activity is BINGO!!
Walking along the beach front, it occurred to me that we were here just 7 months previous. I had portable liquid oxygen through nasal specs running at 2 -3 litres and had someone pushing me along in a wheelchair. Now just 2 months post transplant, my little legs were carrying me round and i hadn't walked this far in such a long time. I could breathe, i wasn't breathless at all and it just amazed me and the rest of my family. I felt incredibly lucky and i cherish that moment.
Our holiday trip was cut short as one member of the crew got poorly and we had to come home a day early but the whole trip was lovely and brilliant to be able to compare where i was before transplant and were i was just 2 months post.

I have mentioned before that i have a godson named Alfie and it was his birthday in April so me and my mum too him to Sealife as he loves Nemo or as alfie called him.. MEMO!!
So we went to pick Alfie up but was greeted at the door by Buzz Lightyear instead.
He was utterly mesmorised by the clownfish (nemo fish) and i have the cutest video on my phone of him with a cheesy grin on his face dressed as buzz lightyear glued to watching the 'memo' fish!
When we had gone through the sealife centre i bought him some little nemo fish to play with in the bath and a nemo teddy. We headed off for some lunch but not before popping into a disney shop to buy him a dory fish teddy to go with his 'memo' one. It was hometime so we piled all the toys into the car with him and took him back to his mum all finding nemo'd up!

One evening, i thought i would start writing my transplant story down and found myself making part 1 of these blogs. It was at the end when i had finished and posted that i was suddenly hit with an overwhelming wave of emotion and i cried and i cried and cried. This time i didn't feel better afterwards. I regretted writing the post and going back to re-visit what was the hardest time of my life so early on. I know now, that it was too soon to go back there and drag up thoughts that i had been forced to push to the back and get on with everything. Now i had took the time to reflect and in all honesty, i let it take over. The panic, the fear, the emotion. Everything tumbled on top of me and i went to bed feeling flustered. Waking up that morning i thought, today is a new day but this cloud was hovering over me. I tried to pretend it wasn't but it is so hard not to!
I constantly had a sickly nervous feeling that was there all the time from the moment i was awake till the time i went to sleep. It never went away, it came in erratic waves. One moment i would feel slightly nervous and the next it was full blown panic modes. I didn't know what the hell was going on or why it was going on so i mentioned it in clinic as they always ask how you are psychologically and mood wise. I told them everything and they told me to fill a form in on depression and anxiety.
I knew this wasn't depression. I was happy.. i just had this nervous feeling that held me back and that was causing me to feel down sometimes. So i completed the questionnaire and handed it back over. I asked why this was happening and the lovely nurse Lisa, told me nothing was happening. I had been through a major operation and i was 21 years old, i had a totally new life and although it was amazing  of course it was going to be bloody frightening too. She also mentioned that my meds can have a major affect on my mood.
I knew she was right with what she was saying but it didn't make these feelings go away or make me feel any better. I still felt like i was wasting time feeling too scared to leave the house or sit in the house on my own or go out in public places.
Nothing i seemed to do helped. If i stayed in, the feeling would flood me and i became so withdrawn because my mind would go overtime. If i went out, i would feel fine one minute and then it would creep up on me and i'd want to just leave and go home.
This went on for weeks and it was really bringing me down, i felt trapped but most of all i felt so guilty for having these feelings.
One evening i went out for tea with shaun and as we sat waiting for our food, i started getting the usual signs, the sickly tummy feelings, the heart racing and the could feel myself getting edgy and agitated as people walked past us. I stood up to go to the bathroom.. big mistake!
I locked myself in the room and sat down for a wee, my breathing was getting faster now and i was having palpitations and getting sweaty. It felt like the little toilet cubicle was closing in and i just felt what i assume is what it is like to be claustrophobic but yet i had never had that problem before. I finished what i was doing and got myself out of that bathroom pronto! It settled when i got back to the table with shaun but only slightly.
Minutes passed but they felt like hours and still our food hadn't arrived, i just wanted to leave and go home but i didn't want to just admit defeat and i didn't want to ruin a night out. So i persevered. BIGGER MISTAKE!
The feelings grew and grew and suddenly i thought i couldn't breathe!!!
I stood up and left, i just had to get outside.

I didn't know what had just happened but i hated this and it was the final straw.
I told the nurses the next day at clinic and pleaded that they helped me, i didn't want to carry on like that. I felt pathetic. She told me it sounded like i was having panic attacks and more than likely suffering from a form of anxiety.
I asked why hadn't i heard from anyone about that questionnaire i had completed last time and she said due to me not being 'high risk' i would have been put to the end of the list to see the psychologist. I told her this was ridiculous.  I understood that people who are high risk obviously should be priority to see the psychologist but it was terrible that that's what it had to take to be seen and helped. I didn't want tablets, i just wanted some ideas on how to help myself. I just felt like there would be people out there who would feel the same way i did or similar and they had done the same as me, completed a form and waited but heard nothing, so they waited longer and longer and eventually they may have become 'high risk' all because their needs weren't deemed important.
I completed another form and had to wait again and continue at home coping on my own.

So my coping technique was too keep busy. So from the moment i woke up, i was out the door and finding anything and everything to occupy my time till it was time to come home and get myself to bed. WORST IDEA!!
I wore myself out and when i became unwell, i kept going rather than slowing down. I'm not saying this caused what happened next but i certainly did myself no favours. I exhausted myself and due to being unwell, i ended up on IV's, a day into them and i felt 80% worse, i was now being sick and felt dreadful. The following night, i had been bringing up very watery, loose sputum and my chest sounded more chesty than it ever had, which was hard to believe. As the night went on, my breathing got worse and i checked my sats to find they were in the 70's! Panic hit as we knew i had no oxygen in the house after a quick debate on what was best, i asked my dad to call an ambulance and get me to hospital.
They came and checked everything and then popped me on oxygen, they agreed to take me to Wythenshawe so i could go onto the transplant ward there. That weekend we found out i had pneumonia and i was needing high levels of oxygen but the oxygen in my blood when they did arterial gases weren't improving, it was decided i was to go back onto ICU so i could have an arterial line in rather than them keep doing incredibly tricky and painful injections in my wrists and i could be placed on the C-Pap (non invasive ventilator) to help control my oxygen levels in my blood more thoroughly. It was petrifying. I won't lie.
It was scary how fast that came on and it was scary to feel back to how i used to be, unable to talk due to getting out of breath. I spent a week on ICU and slowly things were improving when they said i could go back onto the transplant ward.
After sessions with physio, i was allowed to go home a week after being moved off ICU, i went home on IV's just to keep myself well. I had my second biopsy before i left and it came back clear with no rejection!!

As a family we were once again hit with some tragic news.
My big cousin was able to give his organs to save people's lives. His amazing parents gave him the opportunity to honestly be someones hero and they helped to save the lives of others therefore, becoming hero's in there own rights. To have seen and gone through both sides to organ donation in the space of 5 months was unbelievable and heartbreaking.
To see how it gave hope to my auntie sharon in what must have felt like a hopeless situation, just gave me the warmest feeling. I can only hope i manage to do my donor proud, their family proud but also sam and my auntie sharon and sam's dad jim, proud.

my cousin Samantha, me and my cousin Sam

I started talking more to people about how i felt, rather than being ashamed or guilty of it, i knew i needed to tackle this head on or i wouldn't get any better.
I talked a lot to my aunties, to shaun, to anyone who would listen really. I came to realise that maybe lisa was right, this was a whole new life i had literally been picked up and thrown into, i had no plans, no goals and no idea what the hell i was doing!
I had to learn everything again and literally learn how to live like a normal person. (or as close to normal as i was gonna get) - whatever normal is?!
I have come to my own conclusion and i could be totally off the mark but i think i was getting these anxious feeling when out and about or sat at home because i was overthinking everything way too much. I was overthinking about what other people would be expecting of me way too much. I was also out in the wilderness. I was used to being ill, i was used to hospitals and i didn't have that anymore. I didn't know who i was because for years i had been a girl with CF, oxygen, NIV and hospital admissions all in tow.
Now i was a girl with shiny new lungs and a lot of people watching seeing what i would do with these new lungs and that was a lot of pressure but i was silly.
Nobody was putting pressure on me but myself.
Nobody was making me feel guilty for feeling this way but myself.
i had a long harsh word with myself and although i still get my down days and these nervous feelings from time to time.. it rarely stops me from doing things.
I actually want to do things now and most of the time i enjoy myself.
I just want to tell anyone that has these feelings post transplant that you aren't going crazy like i thought i was and you shouldn't make yourself feel any worse for feeling like that the way i did. These are your feelings and your thoughts and as cheesy as it may sound. That is perfectly okay that that's the way you're feeling. You are allowed to feel down, you are allowed to feel anxious and you're definitely allowed to cry.
So do it and then allow yourself to feel the good times too and if extra help is needed.. take it!
I managed to pull myself out of the slump without seeing the psychologist, without tablets and without running myself to the ground by not giving myself a break. I had accepted i was going to die at christmas before transplant so i thought it was time i accepted that actually i was going to die but just not yet.

i love this little picture

So here i am, 6 months post double lung transplant.

my 6 moth post Facebook status

I go to bingo regularly once a week with my mum, best friend and her mum and sisters.
I turned 22 and saw the musical i have wanted to see since i first got into musicals.. WICKED!
I have got back into my love of cooking and baking.
I have been getting more focused on moving out and renting a place with shaun.
We are planning a holiday!
I love this life that i live.

After the pneumonia, my lungs hadn't been as perfect as we had hoped and i have needed on and off IV's since. My lungs functions took a dip and my x-ray had some shadowing so broncs are a regular thing at the moment. I did have a phase were things were improving and i was close to getting back to my highest lung function results but then sods law.. i caught a cold and it has knocked me back again. So todays clinic goes as follows:

i am back on IV's for two weeks
i am having a bronchoscopy tomorrow
my lung functions had dropped slightly
my x-ray is no worse than last week
i am still pretty happy.
these things are what i expected, i'm immuno suppressed and colds tend to get on peoples chest regardless of having a lower than average immune system.
these little bumps in the road are so expectant in the first year or so of transplant and i am doing everything i can to prevent them and deal with them so as long as i continue to do so.. what else can i do?

So there we have it.. part 6 over and out!
I have a few more blogs jotted down in my notebook and i am still here so i guess this isn't the end of the transplant journey but the end of the journey so far, now that you're up to date!
Just gonna finish off with a few pictures of the last 6 months <3 p="">
Big Wheel on the pier

Buzz with Buzz ready for Sealife!

Some of my crazy family loving life in Blackpool!

A selection of baked goodies!

Captivated by all of the MEMO's

Alfie & 'MEMO'

A ride on the pier at Blackpool


Alfie with all his presents

Dirty Dancing the musical for my dads birthday

Bingo Nights once a week 

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  1. We are allowed to post our thoughts and comments too. You should be happy now not feeling bad or scared

    1. You're right, you are entitled to your opinion and thoughts.. of course you are! As am i and therefore, that's what i choose to write about in my blogs. Thank you for your comments and views. Have a lovely day !

  2. And Sophie is allowed to write about her journey on the transplant, these are her feelings and how she felt and only how she felt, all her blogs are how Sophie felt on her journey

  3. You have powerful words Sophie. Stay strong and live a wonderful long life. I love reading your blog. Love sam xx (your mum's friend from nursery) xx

  4. I just think she should have made it happier. Someone died for her to be still alive now and then she feels sad? Why?

    1. I really don't mind you commenting on my posts and expressing your views. I do however mind that your views are extremely uneducated. I would suggest you look into the process of organ donation or re-read my blogs as i have mentioned before on Part 5.. nobody dies purely to save my life or anyone elses life who is needing an organ. The donor is already classed as dead before organs are retrieved and most importantly, that person whoever they may be was going to die regardless of donating or not. Therefore, nobody is dying for anyone. It's so very disrespectful for the donor's family who are left behind and make that selfless decision to allow someones wishes to be carried out that you would even say something along the lines, what are you suggesting by saying that?
      Are you trying to say as someone in the medical profession like you stated in another comment, that you would carelessly treat a patient in order for them to donate organs? Death is natural, it can be unexpected, it can be a very drawn out process, it can be heartbreaking and it can be the worst time of peoples lives but it is natural and it happens to everyone whether we like it or not.
      I don't need to explain myself to you and i don't feel the need to, i just wanted to stress that you are very ignorant to what happens organ donation and would suggest you look into things before deciding what you think is right or wrong. Thanks for your comments again. Have a lovely weekend.

  5. Sophie no matter where you are, where you go or what you have been through, you will always come across people like that ^^^^ I think your a true inspiration and I love reading your blogs, they are truthful and the majority of people will respect you for that. Like you said what would be the point in telling lies on how you felt? I say keep doing what your doing :-) xx

  6. Anonymous you sound like a person who has either lost some-one who was an organ donor or your actually waiting for a donation. Unless you've been through either situation you have no idea how Sophie should feel.Saying she should be happy and on top of the world is like telling a new mother "You have a new baby you shouldn't have post-natal depression." Sophie has a major drugs regime.......,all her natural hormones and responses are suppressed...the grieving for the loss of her closest family members.... and to boot..... a life to look forward to which she has never dared even dream about and so I'll be really nice here and just say go away and analyse your own comments Anonymous. Why are you expecting Sophie to have feelings that people who haven't had Sophies experiences this last six months dont have. No-one experiences euphoria for more than a fleeting moment,everyone who has a high has to come down to a low. If you just live on a plateau of perpetual happiness it means you are not living in reality.

  7. No I work with cancer patients and see there struggle every day. Yet they manage to carry on smiling and full of optimism. I understand transplant must be very hard but look at how wonderful he life is now. What does she have to be sad about now?

  8. Go away anonymous, you don't know what your talking about

  9. Anonymous I dont know what capacity you work in with cancer patients but believe me, they may smile at you for a fleeting moment but behind those smiles are a lot of tears and why me as they learn to cope with their situation, as Sophie has done for the past twenty one years. What do you do with these patients? Obviously you dont spend any amount of time with them or you would know differently about how people cope in public and privately. I am also speaking from experience Anonymous.

  10. Also Anonymous you cannot possibly know Sophie or you would not make these comments.

  11. Do you know Sophie?
    How can you compare with people that have a completely different illness,
    You really need to educate yourself on something you clearly know nothing about,
    You cannot compare, you have chosen to comment on a blog, a blog on the highs and lows of a journey of a young lady that has struggled with this disease all her life,
    May I suggest that before you troll through people's blogs and place such stupid comments on them, that unless you have been through a journey yourself or a family member then you cannot possibly comment on how anyone should feel,