Life Post Transplant

I’d like to be able to write that life post transplant has been amazing with no further complications, but that would be a lie. I have had post transplant complications but then almost everyone who has a transplant gets some kind of complication whether it is signs of rejection or something else.

My complications haven’t been that of rejection but narrowing of the upper airways which their putting down to the way my trachi scar has healed. I had a small procedure a couple of weeks ago where they dilated the airways, however I was told it may happen again, which it has, so the airways will now need a stent putting in place to permanently keep them from closing again.
I’m also currently on my CF ward due to having a low white blood cell count, apparently it’s the anti-rejection drugs which are more than likely to be the cause of this. So my CF team are liaising with the Transplant team in Newcastle and hopefully this will be resolved over the next day or so.


On the brighter side, life post transplant is pretty cool, I can take in more air than ever before and to see the SATS monitor say 97-99% is pretty awesome, I used to be lucky to see 92% or on a really good day 94%. I have bundles more energy and no longer struggle with the daily day to day tasks like cooking, cleaning, shopping etc. I’ve also got to the point where I’m considering returning to work after Christmas, but I don’t really know what I want to do. I would love to go back to teaching dance and PE, perhaps on supply like I was pre-transplant or maybe something totally new. Making a decision such as that I’m finding quite difficult, you see its like I had got used to living this ‘half a life’ where I was reliant on others and couldn’t work and didn’t often make too many plans in advance I just lived each day, but now this huge door of opportunity is open once again, but I just don’t know what to do with it, where do you start? You spend all your time waiting for that second chance I just want to make sure I get it right and do my donor and their family justice.


Mark and I are making plans to go on holiday next year with the rest of the family which I’m really looking forward to, will be just what we all need.

I want to end this blog by wishing Victoria Tremlett http://www.facebook.com/#!/groups/368773527723/ a trouble free, speedy recovery. Victoria waited 4 years 3 months for that life saving call and it came just in the nick of time. Welcome to the rest of your life Victoria.



Taken whilst in ITU...
What a difference
11 weeks make.












Through the eyes of a parent

Through the eyes of a parent

I said on my last blog that it was to be continued. I think the next most logical step to take is to publish my ‘mum’s log’ this contains information about what happened whilst I was unconscious and on life support but from a mothers perspective.

“Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith.”

Once again I found myself in the hospital chapel today praying for a safe recovery for Sharee and of course the strength to believe that she will make it.
I’ve got the impression over the last few days that staff don’t want to build my hopes but that is exactly what I need to hear ‘a little hope.’

The last few days have been the worst days of my life...

Tuesday we got the call to come to the Freeman in Newcastle and given the go ahead for the transplant, things were looking good, lungs a good match and in good condition, I was shaking so much, nerves and excitement about Sharee getting her new lungs at last.

7:30am Sharee was taken down to theatre they said the operation would take 6-8 hours approx. 8 ½ hours passed and I phoned Katie the transplant coordinator to ask if she could find out how things were going. She came to find me at around 8:30pm 11 hours after Sharee had gone to theatre, took me into a room and told me there had been complications, the donor lungs had been too big, the surgeon had to trim them to size, the condition of Sharee’s lungs was dreadful and secretions from them had leaked into the chest cavity. All of this had put huge strain on Sharee’s heart and it would not start beating, they had to crash it and put her on by-pass to rest the heart with the probability of leaving her chest open all night in theatre in case of blood clots because of bleeds. They decided, however, to close her chest at around 10pm and she was taken to I.C.U This news knocked me for six, I was so frightened and found it very hard to cope with. I wanted them to tell me that Sharee was going to pull through all of this, but they couldn’t their words were... “Critical and the next few hours are crucial.” No one can imagine how I felt at that moment.
I was allowed in to see her for 10 mins and it broke my heart to see her wired up with tubes, machinery etc, I was expecting it but it terrified me.

The next day Thursday the 11^th, I was allowed to see Sharee and was told I could come and go when I pleased because of the circumstances. Things weren’t looking very good, there was mention of going back into theatre because of suspected blood clots, Sharee was been pumped full of drugs to steady her heart rate, try stem the blood loss, she was needing blood transfusions and then started to bleed inside the lungs, which they thought needed to be looked at in surgery. I was hoping and praying it would not come to that they had already said that her body had suffered a great amount of trauma.

Sharee’s dad and sister arrived to see her, staff were reluctant to let both of them into visit as rules say 2 to a bed to reduce risk of infection, but again they let them both in just once to see her because of circumstance. Over the course of the day Sharee’s heart rate seemed to steady and the bleeding slowed down which was very good news I was then told that her condition was stable ‘a good sign’.

Today 12^th of August: - things have been much the same, I arrived at the unit to find another large machine had been rolled in, Sharee’s oxygen levels had fallen very low overnight and once again they suspected blood clots to be the cause.

The machine was to enable a camera to be put down to her lungs to see what was going on. It didn’t show much so again that was good.
At the end of today when I left the unit Sharee was been given an infusion to help her pass urine, with all the fluids going in not much was coming out. I was told that fluid retention can put a strain on the heart and lungs, therefore, if the infusion doesn’t work then dialysis maybe given. I'm really hoping that when I go up there in the morning they have some good news for me.

Saturday 13^th August
Sharee had a good day today; the dialysis wasn’t required which was good news. Her blood pressure was a little unstable so a few new drugs were introduced and the drug that keeps her unconscious was reduced and the pain relief increased to compensate for this. Staff were quite amazed at the fact that Sharee was moving about so much and opening her eyes considering the amount of pain relief was enough to put a rather large man out for the count, but that’s my Sharee fighting already.  So all in all, a good day. Darren came up to Newcastle for the second time which was nice; it’s so lonely been alone up here, Sam is coming tomorrow. Hopefully they are starting to wean Sharee off of some of the drugs tomorrow. The surgeon said today “we are now beginning the steps forwards instead of backwards” nobody can even begin to know how it felt to hear those words...

After seeing Sharee open her eyes and move her arms around yesterday to the sound of my voice, I was quite downhearted today to see her heavily sedated, her temp was high again 39.2 and the bleed from her right lung had increased again. They didn’t seem overly concerned about this, or if they were they were not letting me know. They answer all my questions with “yes were quite happy with the way things are” I'm sure they are happy that things are stable but it feels to me that its one step forward  and two steps back and it’s hard to get my head around. I suppose been a mum I want to see things happen faster but I know they won’t because of the trauma she’s been through. Let’s hope tomorrow brings good news...

Not a good day today, Sharee still has a high temp and her x-ray wasn’t quite as good as yesterday so another broncoscopy was arranged for 12 lunchtime.  I went for a walk and returned later .They found lots of inflammation on her left lung and sent off lots of samples to check for infection I was also told she had a bit of a seizure and because of the irregular heartbeat they had to shock her heart twice to give it back a normal rhythm. This worked for a while but the monitor which I'm constantly watching began to show irregularity again, I had to leave the unit and get some air to clear my head. I’ve got to have faith that the doc’s and nurses know what they are doing; I'm just so desperate to see improvements. There are signs that Sharee is trying to fight i.e. every 20 breaths that the ventilator gives her, she is breathing 10-15 breaths herself and when I said goodnight her eyes opened. I looked at the radio wishing it was a CD player so I could perhaps play some of her favourite songs like Avril Lavigne then the DJ said “coming up we have Avril Lavigne ‘Complicated’” what a song title, what a coincidence of thought.

Wednesday 17^th August

Today when I arrived at the unit I was told the plan was to put a tracheotomy in Sharee as she wasn’t tolerating the mouth tubes, Sharee was semi awake and trying to mime something to us. We understood she wanted her teeth brushing, but couldn’t quite get what else she was trying to say and she found this very frustrating and got quite upset about it.

I returned to the unit around 5pm as instructed by the staff and was amazed to see Sharee sat up, completely off her sedation and wide awake. She tried miming again and eventually we understood what she was trying to say and why she was so upset that I didn’t understand. She wanted to know if she had actually had the transplant, I was elated when I finally answered Yes you have had your transplant. Sharee looked up to the ceiling and mimed the words ‘thank god’. She’s asked many questions tonight a sure sign she is back and ready to fight, what a good day!

Thursday 18^th August

One week and one day since Sharee had her transplant, I think I'm going to bring ‘mums log’ to an end. Writing things down has helped me put my thoughts in order but more importantly it’s a window for Sharee to look through and see the events of the week in which she slept after surgery, a week that I can truthfully say has been the worst of my life, I’ve prayed, I’ve cried, I’ve hoped and when I get the time I'm going to have a nervous breakdown.

Sharee is bit by bit, day by day getting stronger and more determined, I can now see her fighting spirit showing through, it’s the sign I’ve been waiting for because now I know that Sharee will fight her way back to full fitness and nothing less will be good enough for her. I think I will sleep well tonight! Xxx

Call number 3 The call that’s literally ‘saved my life’!!

The call that’s literally ‘saved my life’!!

Before I start to write this I would like to dedicate it to someone whom I never got the chance to meet, why? Because they were too busy saving my life... this is for a friend, an angel it’s for my hero without whom I wouldn’t be here... My Donor.

I'm having a little trouble putting into words how I feel; the 10^th of August was so dramatic, we had been at the football match Leeds United V Bradford City at Elland road by we I mean Mark, Jack and I. Leeds had won, it had been a good game, I struggled breathlessly back to the car afterwards sat down puffing on the inhaler when the phone went, it was 10pm on a Tuesday evening and my gut was telling me it wasn’t a social call. I was right it was the transplant  coordinator telling me they had some good lungs and I needed to move quickly, well that’s when the drama started, I couldn’t move quickly I was stuck in traffic and had no idea where I was. The transplant coordinator told me to stay where I was she was going to send a police escort for me as we’d managed to give her a rough Idea of our location and of course the car details. . Time was passing quickly and there was no sight of any police so I and Mark made the decision to set off the traffic was clearing and we needed to move.  The coordinator rang back so I told her of our decision and she said to ring back when I was 10 mins from home, so that’s what I did. But I assumed she meant Mark’s home, nope wrong again so after a hard cya later (mark couldn’t come as he had to look after Jack) off I zoomed home luckily it took only 10 mins but my gosh I pulled up and there was a first response car and ambulance all with the flashing blue lights going, peeping neighbours and me sat there thinking my days talk about drama...

After a few checks o2 levels etc, off we went in the ambulance, blue lights all the way... I had always said I never wanted all that fuss teach me for going to midweek football. So it was just me & my mum all the way to Newcastle it took us about 2 hours maybe a little less.

Once we arrived things happened very quickly, x-ray was done, blood was taken and I was told the lungs look very good on paper and as long as the retrieval team are happy I would be going to theatre.

About half an hour after this the coordinator came dashing in and her exact words were “so Sharee, do you fancy some new lungs?”  I think I nodded that’s all I could do I couldn’t breathe, couldn’t get any words out, I had the excited/scared feeling running through me.

Then it all hit me like a freight train at 100 MPH. This was it my life in someone else’s hands, the hands of a surgeon who we shall call MR TOC, I didn’t know him, I was just another case to him, another number. What would I do if it all went drastically wrong? My mum was up here dealing with it alone, sat waiting for over 10 hours for the ordeal to be over. How do you truly put those feelings into words, imagine that was someone you loved, your family, your child could you describe it? Deal with it? I wanted to sit and cry I was that scared but I couldn’t afford to fall apart now, id got so far and I had to be strong for my mum so I grit my teeth and off I went to theatre. The last thing I did was look the anaesthetist in the eyes and I said to him please I'm begging you don’t let me die.

To be continued....

False Alarm no. 2

False Alarm no. 2



So there I was just about to settle down and relax with a DVD when the phone starts to ring. I answered and instantly heard the familiar sound of the Transplant coordinators voice, she asked how I was and I knew when I looked at my watch and realised it was 10pm on a Saturday night, that this wasn’t just a social call. I was right. “We’ve got some potential lungs for you” she said. So off I went to the Freeman hospital, Newcastle.


I didn’t seem to be waiting around as long this time, things moved much quicker, I had all my tests done, bloods, x-ray, ECG, blood pressure, oxygen SATS. They all came back fine and I was then told that the tissue typing was also fine.


That’s when it all got a little bizarre...


The coordinator said to me that the blood gasses that had been completed on the donor lungs were good and they were now going to physically inspect them and at this point she had to make me aware that these lungs were in fact from a donor who had smoked. She explained that the reason she had to tell me this was because of new consent which is currently been put into place due to stories such as this one http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.telegraph.co.uk%2Fhealth%2Fhealthnews%2F7827149%2FTransplant-patient-died-after-being-given-smokers-lungs.html&h=QAQAbDpAb


Of course just because someone smokes doesn’t mean they have donated unusable, bad lungs. The above story was to do with far more complex complications.


However, I was a little taken aback by her sudden announcement for my consent to use smokers lungs as honestly I didn’t want to swap the pair I have now for another pair of damaged failing lungs. I asked for some time to consider my options weigh up the pros and cons. Do I take the chance? Will they work? Time to consider what ifs, what if I say no I don’t consent, but this was my chance and turns out to be my only chance.


But time was a luxury I didn’t have. The decision needed to be made and made quickly. So I decided to bite the bullet and agree to consent. I had every faith that the surgeons involved would not give me unusable, unreliable lungs.


On closer inspection it turned out that the lungs were not suitable, the lower left lobe wasn’t inflating correctly.


So back home it was, to sit and wait for the phone to ring again. Here’s hoping it will be 3rd Time lucky. Please keep the Donor and their family in your thoughts, the lungs were a no, but several lives may still have been saved and without people like this, people like me wont get that second chance.

It’s all in the dress rehearsal

I'm finding it difficult to find the words to describe the events which have unfolded during the last 48 hours.

Take your worst fear, the thing that scares you most in the world then add to that the feelings of uncertainty, hesitation and indecision then balance that with the knowledge of the new lease of life that is literally within your grasp. Then feel the sinking feeling in the bottom of your stomach when it’s all snatched away and the transplant coordinator says to you “were sorry, but despite the lungs been a perfect match and despite you been perfectly fit enough for surgery the lungs are too big”.

That about sums up the whirl wind of the last 48 hours.

It has been a hard-hitting, very long and drawn out process, and if I'm honest when I was sat waiting for the transplant coordinator 99.9% of me wanted so much for her to say yes but 0.01% of me was so scared, so undecided and so mentally unprepared that I also wanted to hear no not this time. I hope that doesn’t sound selfish to anyone who is reading this.

I'm going to go and relax now, try getting some sleep and try to control the persistent, nagging cough which seems to have developed.  

I'm going to leave you with a verse from a song; I listened to it and can very much relate to it.

“Caterpillar in the tree, how you wonder who you’ll be. Can’t go far but you can always dream. Wish you may and wish you might, don’t you worry hold on tight, and I promise you there will come a day, when the butterfly flies away”.

I sit and wonder every day, dream about the future that’s slipping away from me. Wishing I could have back my life, be able to do everyday tasks without feeling exhausted and fatigued. Then I think about it, I smile and I fully believe I will get my transplant, my life back, my wings to fly.

Goodnight x

Can faith really move mountains?

I wouldn’t call myself a devout religious person, by that I mean I don’t regularly attend church or say grace before a meal (that’s not to say I don’t appreciate things though), but I'm not what you’d call a dutiful follower of God.  I do however though like to believe that there is something else after life as we know it ends an afterlife perhaps or a new chapter or journey, a comer rather than just a full stop. I think though that if most people are honest to themselves everyone likes to believe in something and not necessarily religion, maybe it’s a coping mechanism, a way through the hard times, a chance to momentarily stop thinking about  reality.

The title of this blog; can faith really move mountains stems from an old A’ level paper that I wrote. I based my answer solely on my life experiences to that point. By the time id reached 16 I had fought against a mico-bacterium which was related to the family of the tuberculosis bug. This bug really did some damage it halved my then outstanding  lung function of 110% to 55% and I lost most if not all of the 10 years worth of dance muscle that id built up. That was the first time CF had ever really affected me, I had to do my GCSE mock exams from a hospital bed and I felt like my life had been hit by a freight train. Subsequently after handing in the A’ level essay I was told that I had entirely misunderstood its concept. But I disagreed and to this day still do, you see something got me through that difficult time in my life and although I know medical intervention played a huge part in that I also like to think that self-believe played an equally important part, if not a bigger part. I believed that I could overcome that downward spiral and dance again and go to university, qualify as a dance teacher etc and I did, I did all of that. Would I have recovered so well if I hadn’t believed in myself I'm not sure I would have?

These days things are defiantly not what they were when I was 16, my lung function varies constantly I think the highest it reaches now is 22% or there about, my oxygen saturations (on room air) tend to hang about the 92 to 96% on a good day but on a bad day can be as low as 88% my weights steady. But I'm limited in what I can do, I'm on the transplant list and life health wise is certainly different, but all of that is circumstance beyond my control and I may not be able to change what is happening but I can believe in myself and believe in the fact that yes that call will come and yes I’ll get my life back. So can faith Move Mountains, if you believe in something hard enough if you have faith that something will happen, can you make it happen?  I believe so.  

Life on the Transplant list is a life on hold.

I’ve been on the transplant list now for 2 months and 1 week and if I’m honest I'm still unsure about my exact feelings towards the whole process. By that I don’t mean that I'm unsure about transplant been right for me because I know that it’s what I want to happen, but I’d be lying if I said that there wasn’t the odd day where I sit and just wonder to myself is it all really worth it. ‘Someone has to die in order for me to live’ how does anyone ever really come to terms with that statement? Yet if anything were to happen to me I'm a firm believer in organ donation and my wishes are that any suitable organs can be used for transplant and I signed the organ donor register when I was 16. Can you see the mishmash of emotions that such a predicament leaves you feeling and dealing with?

As for ‘life at the moment’ I feel blessed to be able to say that I still have good days, albeit their far and few between, but I do have them. Take this week for instance my oxygen saturations were 96% on room air, my CRP (infection marker level) had dropped to 7 it had been over 130 and for the first time since last September the number of IV antibiotics that I'm currently taking has been reduced to just one.  I'm not sure how long this will last and have no intention of “holding my breath” so to speak but it’s a release a respite if you like from the endless breathlessness, the relentless IV antibiotics with their sometimes unendurable side effects, but when it all subsides and when things return to “normal”, when I struggle to wash my hair, to cook a meal, to walk the few short steps to my car, when I'm sat willing silently for the phone to ring... It will all hit me again like a tonne of water and I’ll instantly remember how it feels to feel so weak, Ill and unable.

I’ve been asked on a few occasions now how it felt to be told you need a transplant. I remember that day so clearly I can still hear the echo’s of the words... “Sharee, we’ve looked at your x-rays, looked at your rate of decline and we think it’s time we talked about referring you for transplant”. All I can say is it was like I was trapped inside a game of Russian Roulette staring down the barrel of a gun waiting and wondering, not knowing what was going to happen to me next.

I try each and every day to put a positive spin on everything I do, painstakingly paint on the “I'm fine” mask, I have too, it’s the only thing I can do, I have to protect those I love, those I care about. I have to protect myself; I can’t let myself fall apart because I have to be strong enough for whatever happens next.

I'm finding hard at the moment not been able to work, you see the good days don’t last long enough to hold down a full time job plus I'm a qualified dance teacher and id be kidding myself if I thought I could do that right now, but dancing wasn’t just something I did, it was a part of who I am and everyday that I'm waiting for that call to come, another part of who I am disappears. At just 27 I see friends going off travelling, buying houses, having families etc and although none of those things have ever been top of my priority list the fact that I can’t just go and do things really weigh’s on my mind. The realisation of my life compared to that of some of my friends is that I know in no uncertain terms if I don’t get a transplant I will die and until that call comes my life is on hold it’s like I'm just existing not living.

Organ donation & why you should opt to donate

Ive heard so much about organ donation recently, I cant decide if thats because its finally getting the much needed media attention that it so deserves and needs or because now that its such a huge part of my life that coincidently im just paying far more attention to everything I hear, see and read.
Whatever the reason may be it really got me thinking.. I mean about how you could really make someone sit up and take notice, how you could persuade someone through just words to opt in and join the Organ Donor Register and I guess all you can do is put an honest and frank account of your life out their for people to read and think about... below you'll find mine.

Ever sat and wondered what it might feel like not to be able to breathe? ever wondered what its like to wake up in the night soaking wet because your temperature is so high and your choking on your own phlegm? ever wondered what it might be like not to have the energy to wash your own hair, dry your own hair to even get dressed? Ever wondered how it might feel to know that you have to use supplementary oxygen because your oxygen saturations fall dangerously low whilst sleeping? Ever wondered what it may feel like to wake up with a headache so severe you're head feels like its about to explode because you've retained too much carbon dioxide? Ever thought about how it may feel to take a cocktail of tablets every morning and a relentless, never ending amount of intravenous antibiotics some with unendurable side effects just so that you can stay alive?
I dont need to wonder, because I know, I live and breathe the above every single day, and at 26 years of age I was been told in no uncertain terms that my lungs are failing me and now age 27 I know that without a double lung transplant I will die.
Been made to face your own mortality is in my opinion one of, if not the hardest situation to come to terms with. How do you tell your family? How do you tell the ones you care about most? What if they cant cope, what then? How do you tell your mum when you know she's already endured the agony of burying a child?
If your anything like me then you will painstakingly paint on the "im fine" mask, grit your teeth and do whatever you have to do to get through the day. I get through everyday because I realise that dispite everything im actually quite lucky, I've had 27 years of memories and experiences (some people dont get that), I have the use of my legs (albeit I can't manage hills, some days even stairs are hard), I can hear, I can speak and I have a home to go to, food to eat, water to drink. There are people in this world in a far more difficult situation than I am and as crazy as that may sound, knowing just how lucky I am compared to some gets me through.

I joined the organ Donor register on my 16th birthday, and if you've taken the time to read this, then I'd ask you to take the time to think about Organ Donation, to think aboout the difference you could make to somebody. Think about you're own family, your mum, dad, son, daughter. What if it was them, what if they needed a lifesaving transplant. Would you accept one? would you be hoping that someone, somewhere had made that decision to donate their organs after their death so that the special person you love could go on and live their life?

Im not ready to give up, to go.. I have too much left to do, too much left to see and achieve. So im asking you from the bottom of my heart on behalf of myself and the other 10,000 people in the UK who so desperatly need a life saving transplant to think about, to talk about it and to do something about it.

"I am too positive to be doubtful, too optimistic to be fearful and too determined to be defeated"

Reflections

Ever just sat and stared at your own reflection, looked right into your eyes and asked yourself where is your life going? Why does everything seem so distorted?



I did today. I guess I just feel so stalled or stuck. Like I’m standing still and everything and everyone around me is whizzing past at 100 miles an hour.


I hate the fact that I can’t do my job. I’m so intolerably bored and been a dancer and dance teacher wasn’t just something I did and something I thoroughly enjoyed doing, it was a huge part of who I am or who I was. I feel like I have this colossal emptiness and I don’t know how to fill it, part of me feels like its missing.

I suppose I’m just sick and tired of circumstance. I’ve always been so in control so motivated and now, now it’s like the C.F makes the decisions and I follow suit rather than it been the other way around and it’s the most unpleasant feeling in the world.

The journey begins here, the destination unknown.

Well here we are, I finally got round to creating a blog. Believe it or not (most will lol) its been sat on my laptop half created for over a year now. My reason for not completing it.. I suppose life just got in the way.

I love been busy, having things to occupy my mind with, but recently ive had to slow down and age 27 im currently awaiting a double lung transplant due to end stage Cystic Fibrosis. Dispite this though I am still trying to remain proactive and upbeat. Im enquiring about different online home study courses that I could perhaps complete and im also attending a weekly pilates class with my lovely friend Rachael with whom i've been friends with since middle school. Pilates is great you get the muscle workout without having to break a sweat and you dont get all breathless.

Im not going to call this a diary as such, if i know myself at all then i can honestly say im probabaly incapable of writing with the extreme commitment that a diary requires. So rather than a diary, i'm going to call this a note book where i will write down thoughts, feelings, quotes etc and you can ask any questions you want and I will try and be as honest as i possibly can be although even I have some secrets.

So this journey or next chapter of my life starts here, the destination unknown.

I hope you enjoy sharing it with me.