Health is like money, we never have a true idea of its value until we lose it

Sunday, 20 May 2012

Transplant Call 2

12th April 2012

Well very different from the last i was waiting for my car to be serviced, having no signal at the garage, the coordinator rang my mum, she was in the middle of the supermarket so after a panic whether to leave her shopping or not she decided to rush to the till, as she'd need some of the food anyway and it could have been taken up to the Freeman.. Whilst this was happening i was totally oblivious and after my car was ready, called at the Doctors for my medication, this is when i received the call.... 

This time it was a random mobile number, so i didn't have the panic i normally do when i have a with held number ringing, i was a little stunned when i heard the Geordie accent... it was the coordinator, the usual ''Hi, how you doing? St James staff said your doing well at the moment'' so of course i agreed, i am holding my own I am able to manage most days within reason, as long as i don't over do it.... then she proceeded to say ''I've spoke to your mum we have you some lungs, but we need to ask an important questions in which you have 10 minutes to answer'' still sat at the doctors at this time, i wasn't even meant to have my phone on, i sneaked outside. the question being '' the person is a 53year old smoker''.... i was speechless, didn't have a clue, what was the right answer? Do i really want a persons lungs that has smoked? We didn't know how much they'd smoked, or how long for, I've looked after my lungs to the best of my ability never smoked, done drugs why would i want this inflicting into my body..... but reality is even a smokers lungs are better than my own which are in late stage lung disease... the coordinator said i could ring her back in 10mins.

I immediately rang mum, asking her what i should do, i didn't know the answer i needed help, meanwhile updating my status asking for opinions hoping people were online to see, and hopefully people that had been in the same shoes could give me advice. Mum who was driving at the time just told me to ring St James' as she couldn't answer she didn't want the responsibility of making such a big decision, a decision that could only be decided by me.... After speaking to the Doctor at st James who i respect, she assured me that any lungs would not be used unless they were good enough, i also rung my friend Hayley (who has a son with CF) so kind of understands from a mum's point of view of what she would want for her son, many varied comments on facebook, a lot of which were go for it, well from the people that knew the people that understood, and have been or in the process of being put on the transplant list..... I decided to go for it, nearly home at this time after driving like a mad woman, as i knew i'd have limited time to get to Newcastle or have to have an ambulance.....

Mum was already to go her over night bag downstairs, food bag by the door ready to go, oh yeah not forgetting the case of wine left on the table ;) (she swears it wasn't intentionally left there as she'd put a bottle in her overnight bag, she was sure to need a drink after today's antics) 

I rang the coordinator back, saying i would be willing to accept the lungs, to which her reply was, after further tests, they've been deemed unsuitable, this could have been down to any reason, like people said to me they wouldn't use any lungs that wouldn't be suitable..... I was partly relived but had also been to hell and back trying to answer a question, not knowing what to do... I think it's good that this happened as it has prepared me for any future query's down to the lungs as i'd now be aware of all points of view and would be  more clued up

Also a friend, explained to me that her lungs was from a smoker who was a similar age to this donor, who is doing really well, do it's definitely opened my eyes to this side of things

So hopefully 3rd time lucky hey :)

Keep smiling :D 

Back in hospital

Well 21st December 2011

        I ended up back in Costa Del St James, i had 3weeks of home iv's not improving so i had to admit defeat and go in, i didn't want to be ill over Christmas, so maybe if i went in for a few days i could be home for Christmas day or on home iv's shortly after, however things didn't go to plan :( 9weeks later i was just coming home! 

My FVC was just 14% damn i was struggling, even making a cuppa was hard work, people came to visit, i was shattered after they'd been there an hour and wanted to sleep, things were slow at picking up Christmas came and went, My mum came to see me and it was a bonus i could watch all the Christmas films, i spoke to my niece on skype which cheered me up too, she said they would be bringing Christmas to me on boxing day.My sis's family were going to come Christmas day, but having other plans i didn't want to ruin them, plus hospital is no place for a 6year old for Christmas....

Boxing day my Sister and family came my niece chuffed to bits cos she'd brought Christmas to be, i had to make an effort, pull myself out of the covers and at least pretend to be enjoying myself, in agony with chest pain, on Tramadol and codeine and still in pain this wasn't easy i didn't quite feel all there, why couldn't i be my normal self for one day. We have a ward kitchen, so me and sister went to cook while Richard and Rebecca watched a film, gave us a bit of girlie time too, we had crackers and even had penguin races across my table, played lots of games something to take my mind of the pain, it was a bit later on i was struggling after them been there quite a few hours, asking for more pain killers and now Cyclizine (anti sickness) well that was me out for the night, but a brilliant day however rubbishy i was feeling

A few days passed they decided not to do my lung function as felt i wasn't up to it, makes me wonder what it really went down to, didn't pick up tried different cocktails of drugs etc still to no improvement, so i had to finally use my reserve transplant drugs, which meant i had to come off the list, then i started passing blood however i seemed to think it was just because I'd drunk a lot of ribena, unfortunately it wasn't, but after a few days that had soon settled, last thing i needed was my kidneys to have a hissy fit i was trying to get better to go home, why wasn't my body co-operating, patients came in went home n came back, when was my time to go home....

A week after being on reserve drugs my CRP started coming down, things were going in the right direction finally yay! now 3weeks on for transplant drugs they decided i could go home, yay at last :D but i had to go home on iv's this been the usual Aztreonam, as they thought it was important i didn't just stop, worrying i could catch an infection again and I'd be admitted again, thankfully the Aztreonam is keeping me steady, i have good days and bad, well saying good days, i know how i felt around Christmas so a lot of day's feel like good days in comparison. 

I'm now managing around 2 weeks on iv's and maybe 3-5days off, just so i get a break, and live a bit of normality i feel this is important too instead of living life round treatments etc

Keep Smiling :D 

Jess xx

First Transplant Call.. ahh

10th August 2011

well the date above will stick in my mind for a long time, the day i received a call having just arrived back from an appointment my phone rang being a with held number i was in a bit of a panic but i had to answer....
''Hello this is the coordinator at the Freeman Hospital, how are you?'' being my usual self, i said fine thank you... then the thing i was least expecting.... ''We have some lungs here and you are a match, so we need to know how you really are'' having just been to hospital i just reeled of what had been said, my temperatures were still fluctuating and high, but after paracetamol they seemed to settle around 37.8 ish although not drastically high this was after a temperature of 38.9 before paracetamol, i knew i had to be honest, although i knew this could also ruin my chances on getting this set of lungs, however i didn't fancy being on the operating table and unwell due to high temperature and infections. after giving this information the coordinator she decided it wasn't worth calling me up to Newcastle on the basis that i had a high temperature and possible infection

The reality suddenly came as she hung up...... Straight away i rang mum, who had no signal as she was out for a meal, My Brother was out the country on holiday, so that was a no go, Then my Sister thankfully answered the phone despite being out with her friends, she also was shocked, it would have been perfect time of year just enough time to be on the road to recovery before my birthday, nice weather for relatives to be travelling in etc...... 

I suppose in a way it made me realise how unprepared i was, which egged me on to check my transplant bag, make sure everything was in there i definitely needed.... Also the fact we could be anywhere when i get the call, out for a meal anything and you just have to up sticks and go...

 Although this would be a positive thing, and have been in various meetings to try and prepare you, there is no way you can possibly be prepared, nothing that can tell you how shaken up it feels, and i didn't even leave the house, total roller coaster of emotions..... 

As my mum had been out she pulled into the drive, first reaction was why the heck didn't you have signal, of course this had not been her fault and i did know where she had gone for a meal, so if needed i could have rung the restaurant, she thought i was joking, I'd been to hell and back on my own why wasn't she there, i then calmed down mum gave me a hug, trying not to cry as this never helps any situation... i then rang my dad to let him know, the people i told... why didn't they understand this was such a big thing, they just shrugged it off better luck next time kinda thing. Why don't people understand? ...... Why do i expect them to understand? They cant possibly understand because they haven't been through it it's not happening to them, they haven't been to the meetings they think this is a cure so why am i so worried and nervous about the whole thing

After going on facebook that evening a friend of mine had similar post she had also been called for a transplant, at the same hospital, around the same time, her op went ahead, i knew exactly what she must have been through, but then realised she'd gone through so much more, i was so excited for her, hoping everything went ok .... 9months down the line she has just completed the Manchester 10k Run in 1hour 47mins for 'live life then give life' charity ( WELL DONE HUN) 

So maybe these lungs weren't mine to have but they have saved my friend, it hasn't been all plain sailing for her but she's worked hard, and i think it's safe to say they have changed her life for the better 

I will leave it there for this post

Thankyou for reading 

Keep Smiling :D
Jess xx