Saturday 26 November 2016

There's no place like home

As I'm being wheeled out of the hospital doors, I know that whilst it's not the last time I will be here (I'll still be coming back for clinics) I will not see a lot of the staff here again. They have been coming in and saying their goodbyes for several days. These people who everyday fight to save your life and then, when there is no more they can do, help you to plan your final months with the upmost care.

To every last member of the team who has helped me this admission – the Doctors, Nurses, Psychologists, Physiotherapists and Porters, I do not think I can ever thank you enough. Helping someone to plan their last months must be the most difficult job for any health professional. They are there, firstly to save lives and when this changes to end of life care I understand it must go against every natural instinct. But helping someone die with grace, dignity, comfort and without suffering is a very important flip side of the coin.

Arriving home was actually a lot more relaxed then I thought it would be, usually I struggle with the stresses of coming home from hospital with all the re-arrangements that are needed, especially when all I could really do was sit there and boss people around! But as I was saying, this time around, I actually just felt really happy and relaxed.

Since being home I have had my home carers come in and surprisingly I have slipped back into this old familiarity with ease. This has been made easier with it being the same company I had before my first transplant. The carers are people who really do care. I have to say that caring for people is a hard job and one that has to be within you as a person. What I mean is that it takes something special to help people and enable them to carry on living their lives, or in my case help them to live their lives whilst they die.

I’ve been making sure that I’m not just watching the world go by though and have ben arranging lots of special things to do;

-        A lodge break with my family for Christmas, there's a spa pool which I just want to float in while my oxygen tank sits in a rubber floating device.
-        A night in a treetop hotel which is on Port Lympne Reserve.
-        A trip to Glasgow with my sister to see my friend, Victoria, and our friend, Charlotte, is coming too. We have lots of fun things organised whilst we’re there.
-        Anthony Joshua fight which is something I wanted to do for my husband… I'm also super excited about as I’ve never been to a boxing fight.

These things run from now until January. In between all this I'm resting and spending time with friends and family whilst being snuggled up on the sofa or camped out up on my bed with my loyal companion, Kia. I feel reluctant to organise anything else past then at the moment as I don't know how long I’ve got, so I'm trying to just take one thing at a time and live every minute – creating memories that will last forever.

Monday 7 November 2016

Final chapter

Every song has a ending, every book has to close, my story is coming to its finale and I'm here to tell you all just how beautiful it all was.

I'm 27 a age I never thought I would get to see but due to miracles from medical practitioners and my donors I have been kept here to enjoy what have been the best years of my life, experiencing things I could barely of dreamt of. I'm so grateful for every extra second Iv had with my family, friends and all the amazing people I met and those I got to teach and lives I got to influence, mostly I hope for the better.

I always wanted to make a difference with my life, leave a positive impact on the earth. I like to think Iv done that, whether with my Cystic fibrosis awareness, organ donation campaigning or the more simple ways of teaching my students love and self worth. This in the last year has been one of the most rewarding things to see my students grow as individuals and give them a space to be free from all the problems we each carry with us day to day. A small thing but I hope it left my mark.

I decided it was time to tell everyone my prognosis as it were because it has become a burden to hear, so your better then? And I hope your back on your feet soon? All ment with love and hope but I then feel I'm being false in my replies. The truth is my lungs are severely damaged, I do have BOS a type of chronic rejection but I do also have this RAS which I have spoken of. My lungs are shrinking upwards and squashing the upper lobes of my lungs. I have recovered from the pneumonia as best I can although the infection still lingers and this will be likely to linger due to patterns of rejection and infection being closely linked. All the other problems over the last few months, acute rejection and organised pneumonia can become part and parcel when you have a diagnosis of chronic rejection. Although to clarify if you have infection, acute rejection or organised pneumonia it does not in anyway mean you have or will get chronic rejection! I must emphasis this!

Why have I had this fast acting type of chronic rejection twice? I don't know. Statistically I just fit in  with all the other statistics. 50% of people make it to 5 years, I am of the percentage that didn't or if you add them together I did. Either way I'm just incredibly grateful for what I have had and I want everyone to remember that going into transplant. It's no garuntee but whatever you get from it is so much better then before if you throw everything you can and enjoy every second. 

I feel everyone is going to ask the question about 3rd transplant as they have and in part I have ignored it but I will answer this's I am not well enough to be considered for a 3rd transplant. It's as simple as that and do you know what I'm ok with that, of course I would always want more time but I have discussed this with the professionals and there has to be a point when you trust them to make the best decision for you and I whole heartedly do.

So I am hoping to go home at the end of this week. I will have home health care, mainly because I want my family to be allowed freedom to still live there lives and be there as my family and friends not constant care although they will obviously be involved. I will also be connected with the hospice. Time wise I have 'months' this could be 10 this could be 2 but I want to remain as strong as possible so in the long run the time I do have is better quality. I will be enjoying time with my family and friends making memory's. 

For all those who know me the way I have been dealing with this in private is how I would like to carry on dealing with it openly. It can be uncomfortable for some but it is the 'real' me as much as you will ever see. That is black humour, joking inappropriately, talking openly, my Funeral is Almost planned to a T and I will carry on doing This. In all honesty it's going to be such a event I'm a little sad I can't watch (see this is me slipping a little of that humour in, getting you all prepared) 

Lastly, my aim was to raise £10k in the next year for Harefield hospital. The very place that have done so much to keep me alive, give me a amazing quality of life and in the last few weeks shown me more then ever why they are the lead cardio thoracic transplant centre in the country. They have supported me through every part of this journey and I hope I can reach my target to help them do this work for others.

I am bringing out a t-shirt/vest/top to help raise funds but in the mean time if you would like to donate here's the link once again the total from various people raising money is 


Thank you to everyone for your on going support, I will update as and when but ask that you also respect my families privacy and my own if we do not. As we have always known this day would come this doesn't always make things easier. 

Thursday 13 October 2016

A short trip to ITU

Sunday last week, my friend Amy traveled up to see me all the way from Devon, we chatter for a bit but then I had a little doze as I usually do because my body is working so hard. Then I started to get fever I get several times a day, this was particularly hot one and I had a few members of the team in and out to check vitals, then blood gases several times and turn the 02 up. They asked me if I was tired or couldn't stay awake anymore and to be honest I just couldn't stay away. My breathing rate was really high and while this was efficient to keep my C02 just acceptable they said I probably needed to be down on Rowan ward HDU which didn't really suprise me. I think the shock came when they came back and said I was really high risk now and would actually be moved to itu. I expected to be more panicked but all I thought is well I won't have to worry about doing my medications when I'm to tired, someone else can take care of that for me for now.

My mum, Amy and my sister packed my stuff which mostly couldn't go with me. I had a settled night on ITU apart from one blip where I woke up in tears saying I couldn't breathe anymore and needed bipap luckily the meds they gave me relaxed me and I managed the night off bipap. 

I spent 2 nights in itu and to be honest somewhere that's been so scary for me before seemed to be a place of comfort. I was reasonably aware, some of the nurses knew me and all were extremely soft, compassionate and just what you need when your struggling. A lot of meds were regigged in itu, some to help fight my current pneumonia and others to help fight the symptoms so I can get things like eatting, Physio and rehabilitation done. All important things but when extreme sickness, vomiting, pain and lack of oxygen kick in all very impossible.

The phycologist came round to see me and I was very open to anything she could do to get me in the right place I needed to be. Which for me in my own words 'if my symptoms carry on like this I don't know how I will have the strength to fight much longer' and credit where credit is due I'm feeling so much stronger there were times when I just didn't know how to keep fighting. How do you carry on breathing when every breath feels like it's crushing you, panicking you, it's not enough but you can't get any more. 

My fear when I die is it will be like that, I don't want to suffocate slowly I would much rather the pain be over very quickly.

Anyway I'm now on Rowan part of HDU. On humidified 02 as I have rotten sinusitus. My meds are getting on point and as my CRP has gone from 400 to 50  I haven't had any more temperatures, the symptom meds are all being finley tuned so that I can be as comfortable as I can and do my REHAB to start building some very weak muscle back and believe me I'm working so hard. The hard thing about this is when rehabing before my lungs got strong quickly as it was after my transplants these one well I don't know if they will actually get any better, the pneumonia might be treated but my lung function is not likely to get back to a point where I will ever be able to pole again. To be honest for me to get back to what I love I need a miricale and for someone who has received so many, I'm not sure I can ask for any more.  For me my main goal is getting strength back as much as I can for what ever else comes my way and in the hope that I can make it home where I belong with my family.
Sunshine therapy with the family 

Working hard 

I'm not ready to die yet that's one think that this pneumonia has affirmed to me. Even in moments of doubt I knew I could get through it if I had the right tools. Something Harefield have really come through with.

Wednesday 5 October 2016

Will my strength Waiver?

It often feels like the higher powers above are battling for my life, someone wants me here on Earth the other is saying it's time to go home. 

I'm not on deaths door, that's not what this blog is saying, my health is more stable I haven't had any big drops in lung function, just the trickle of a percent or two, I'm still getting temperature and often feverish at night, my breathing is incredibly uncomfortable but still what ever part of my precious lungs are working are working well enough to  keep my sats up. What this blog is saying is I  feel like the last 6 month attack on my health feels somewhat deliberate. Every few years I'm battling for my right to life. Iv been so incredibly lucky to recieve both transplants and have a extremely good stint of health inbetween. Some people have not been that lucky at all and had complications from the start. But it still feels so incredibly unfair, I often hear people say why me and I have to remember . why not? What would make me so special to not have any health problems, it just doesn't work like that health and disease are not biased. 

But still here I am feeling the uncertainty in my future. Wondering how much strength I have left in me? It makes sense that one person can only do so much, can only carry on fighting so long. What sort of life will this one be from now on if I do stabilise? I'm not saying I'm ready to give up, I'm really not, but I wonder if at some point my strength will waiver? 

Right now it seems that maybe this isn't a infection after all, that all the changes on my CT, ground glass, consolidations, are actually another form of Chronic Rejection. A type called R.A.S I was always lead to believe that when I first had rejection in my first transplant it was B.O.S. Until recently when I signed the forms for my case to be discussed as part of a study, it turns out retrospectively they believe I had R.A.S or in fact maybe biopsies of the lungs showed it to be. I don't know if this means I have B.O.S and R.A.S or if Iv just had R.A.S all along. What I do know is R.A.S is more fatale and harder to treat.

So I sit here and I wait, I wait till they bronch me and tell me the results. Hopefully I do t have R.A.S and this really is just a tough infection. Mean while I carry on trying not to worry about my future but take one step at a time. Sometimes it's the only way to survive. Think about the seconds, minutes and hours but nothing  more nothing further because I don't know what they bring and the fear of them can stop me enjoying the here and now.

Saturday 1 October 2016

The reality of my current situation

I write this blog from hospital. I have been in and out since my last blog. I celebrated my 27th birthday inbetween and reached my goal of 3k for Harefield hospital which I'm so grateful to everyone For helping me do so. My birthday was lovely despite being pretty ill. My husband organised a lovely meal with friends and family and I got to see my brother and friend Amy in the day along with doing a hour of shopping in a wheelchair from shop mobility. 
Ready for my birthday night out, I know I don't look sick right? My ever lasting love for make up saving the day.

With every birthday I cannot help think how lucky I am to still be here thanks to my donors. No matter how ill I am right now, without them there would not have been any more days, any more beautiful moments, all the things Iv achieved in these 5 amazing years! I'm so incredibly grateful for that.

Currently my lungs are really struggling. My lung function has been going down and today it was a mere 0.94 litres this is just 24% I have been treated for a possible infection due to some changes on my X-ray, as you may recall I had changes on my CT before now I have these shadowy changes on the X-ray to. I don't know if there the same thing. Iv had over a week of ivs now and things have just gone from bad to really bad. I have had temperature pretty constantly for 4-5 days although they seem to have come down with the help of IV paracetamol being given very regularly. The only problem is... My chest is completely  clear so the idea of a infection just doesn't seem right. I have also developed a blood clot in my mid line.

This rate of decline has really scared me and I said to my CF consultant today as I'm currently in Exeter hospital, that I don't know where this is going but having lost another 11% of lung function over night although my sats are holding there own, if I lose another 11% over night I may wake up barely breathing and that scares me. If this is a acute fixable episode then I need to know that I'm in the right place with the right people who can get me through this. Exeter are the most amazing hospital ever but as they know they are a CF centre not a transplant hospital. I'm worried about the possibilities of ending up in ITU but at the same time I need to know that I have that option if it came to it. I don't really have many options left so if there are any that are available to me to get me through this I need to know I'm in the right place to use them. So tomorrow I am being transfered by ambulance to Harefield. I hope all the medications can start to work very soon and before this escalates anymore.

People will tell me to stay positive and I am, I'm positive in that I'm surround by the people I love who are ready to help me fight, if I get weak and tired they will help me stay strong. Remember just because I feel fear does not mean I am not brave, I still feel the fear and face it head on, just because I can see the negative doesn't mean I'm not positive, i still chose to see the positive when surrounded by all the negative. Some days though it's just a little harder to find that one tiny glimmer. But I will.

Saturday 17 September 2016

Shattered glass affect

So I had my bronch last week and the result came back with Acute Rejection, this was the Clouding on my CT, also known as shattered glass affect a term I feel describes the feeling on my whole body currently so it has become the title for this blog. 

I have to say this hit me fairly hard. My lung function was its lowest since receiving my second transplant at 40% the inflammation processes in my lungs made everything feel pretty tough. I was still recieving treatment for my organised pneumonia which is also a inflammation immune response in the lungs so it felt pretty frustrating that I then had actue rejection on top of that and my chronic rejection.

I recieved 3 days methyl pred, it didn't quite have the enitial impact I was hoping for but the idea is that acute rejection is treatable and reversible. Hopefully in the coming weeks things will improve.

So I decided while in Harefield I would take part in the Harefield 5k fun run. I say run because that's the title but in no way did I run. I walked and I struggled but I'm so proud to say I completed it. I think anything worth doing is going to be hard. 

My little team, my niece and husband who walked it with me.

If you fancy sponsoring me for my efforts please pop over to

Since I came home things haven't been great in all honest. My lung functions up and down but still pretty rubbish overall and I have had a few new medications added in to try to prevent these inflamation processes in my lungs. The side affects have been rough and I'm just hoping my body will start to adjust. 

I feel like I'm not in my body any more, the muscle waste is very apparent in my legs, I feel thin and very withdrawn. I know I'm losing more weight with the high doses of prednisalone despite eating a fair good diet. My stomach is very bloated and uncomfortable. The exhaustion is relentless, mentally and physically. On top of this Stuart has had the week off and he ended up having a operation on Thursday night due to appendicitis. Stuart is never Ill and I hated seeing him in pain. No matter how minor we hate to see those we love struggle. He constantly told me to go home and leave him there as I was clearly struggling with my energy and breathing but I wanted to be there with him like he is for me. I did as much as I can. Today we're both resting, were a right pair! He's in pain and Iv had episodes of vomiting from my new meds along with severe shakes. Still were here together and that's what matters.

Along with this I had the extremely sad news that my friend Kate Hennessy passed yesterday. I haven't said anything about this as I currently can't find the words. I hope those who know her know its out of sadness that I can't seem to express this and I want my words to do her justice. 

I know this is probably not the radiating positive blog people hope for, sometimes though all there is, is the truth. Things suck alot right now. I'm ok with everything in my mind and know I just need to conserve right now, in the hope for better days very soon.

Thursday 8 September 2016

Let's not write 2016 off yet.

Updates haven't been coming in thick and fast because once I write one ready to upload I leave it a few days and everything changes again.

One minute things seem incredibly bleak and rubbish, the next things seem to going in the right direction and we're all celebrating but then we're back to things being all a little crap.

After my IV antibiotics and radiation therapy my lung function plummeted. If your on Facebook you'll know that things seemed really worrying my DRs were concerned I was nose diving in a similar pattern to my rejection before and that there weren't really any treatment options for my chronic rejection.

I had yet again another bronch and luckily they found something else slightly more treatable called organised pneumonia. This is a inflamitory response, a immune response to a previous infection or sign of something else going on. I was treated with high dose methyl pred which made me feel pretty awful. I put on 8kg of fluid in 3 days stopped peeing, my CF bowels shut down and I felt pretty rubbish for sometime. After 3 doses of methyl pred I went home on a higher dose of prednisalone in the hope that it would make my breathing easier and ease the inflammation caused my this organised pneumonia.

And it did! Slowly things improved a little and to be honest that was great because I was really struggling. I felt like my lung function was a lot lower than it was. In fact I was starting to get really scared by all the symptoms. I came back up to clinic last week to find out if I would be allowed on holiday on the 10th of September to Florida where we had been planning to go for a year and I had saved up all the money myself for me and Stuart to go from what I would say was a very successful year of business for me and a heck of a lot of hard work. My lung function was up to 60% I felt great and so happy to see the rise in the numbers and also being able to feel the benefits in my cardio at the gym. I had gone from 10minutes of level 1 feeling like I couldn't breathe at all to level 1-7 for 20 minutes. Obviously not my greatest but a huge benifit.

As I returned from clinic I started to really suffer with fatigue, I finished one of my lessons and sat in the car for over 30 minutes unable to move, eventually I drove to my mums where my step dad carried me out of the car, my breathing felt awful and I was purely exhausted. It came from no where. (no I haven't over done it that's not how this works)

There were several more occasions like this through the week and I knew something wasn't right. My lung function dropped on my spiro and I rang Harefield. I was already due to come up for a impedance study (a further test for reflux) they told me to stick to my plan and come to clinic. Wednesday I felt dire, I didn't even put make up on. That's really saying something for me, I love to cover my illness with a good foundation, eyeshadow and mascara but the energy to do that felt to much. To be honest just sitting in clinic felt to much.

I had all my tests done Wednesday including a CT and slept in the hospital accommodation overnight. I slept like a baby and I really needed that rest. Waking up feeling a little better I made my way to clinic. 

My DR told me that actually there were a lot of changes on my CT, I'm not very good when it comes to X-rays and CTs I can't usually tell the difference in all honesty. This though was clear, it was like someone had stuck a cloudy day over my lungs. Huge white patches covering large areas. 

We talked about every option I had, my holiday only looming this Saturday 2 days away. She asked me to go away and speak to my husband who was at work, my mum was with me. It was clear that if I am to think about surviving long term then I couldn't go. These patches currently seem reversible by what they can tell, if untreated or only partially treated could scar my lungs even more and make my chronic rejection much worse.

I went back in and said ok let's treats this. I'm going down for a bronchocopy tommorrow and having biopsies, this alone rules out flying on Saturday. Then they will decide on treatment from there. They are confident theses cloudy changes are viral and that treating them with more gross methyl pred and immuno globulins should be affective. Although they won't know 100% until they have done the bronch. 

I feel gutted to say the least. I worked so hard for this holiday and with the last 6 months it's much needed. However I know now is not the time. I have fully comprehensive insurance but there seems to be some issues with my mum and step dad claiming there money back as they technically can still go and so could Stuart. It looks like we may only get the money back for myself as they have all said they couldn't go without me. That wasn't the idea. I really hope that when they have a bit more time to talk to insurance companies we can sort it all out. To be honest I'm not really in the mood to be messed around so if the insurance companies want to play assholes they picked the wrong girl to mess with. 

My impedance test also came back positive so the DRs are going to talk to professor Hannah who did my fundo in 2013 and see if there's something else we can do. It seems there's a lot of confusion over my osophagus and fundoplication and I think that can come from being 2 very separate hospitals. I hope they can finally reach a conclusion that will make sure my lungs are 100% safe from reflux.

A lot of people have said 2016 hasn't been a good year for me, that I can't seem to catch a break. I can see where that's coming from but I also hate to tar a whole year as a bad one. Every year is so precious with out my donors none of them would have Been possible, so although this year has been a little rough Im still determined to think of all the good points along the way and there have been some really good points. Pole theatre, holiday with my husband, passing my aerial silks course, growing my business and really fully enjoying it, starting to teach aerial hoop, feeling successful and proud of myself. Just a few of the things 2016 have bought and the year is not over yet, I still plan to make the positives over ride the negatives and have some amazing pole workshops, privates with amazing pole instructors that Iv booked, a little weekend get away with Stuart's side of the family, beauty unseen, raising lots of money for this amazing hospital and a trip up to Scotland at Christmas to see one of my besties (who came down to see me last week). 

So for now this is my update. Fingers crossed that whatever's going on is sorted and my Chronic rejection is stable. 

Here's my picture for national transplant week as part of live life give life campaign and NHSBT campaign. My piece of paper says "I'm grateful to my donors for all the amazing moments with my family and all the amazing experiences since #TurnAnEndingIntoABeginning"