Life with new lungs...

***Update 1st May***

Ahh, first day of a new month and a first for Rachy since her Transplant :-D


Last night, Rachy, Myself and a few friends spent the night chatting via webcam. First time Ive seen her in person since before her Transplant 7 weeks ago hehe.


It was absolutely fantastic to see her moving, smiling and chatting away, I wont lie, I've missed this ALOT and so had she.


She looked fantastic, such colour in her cheeks and huge smile on her face :-D


She was saying how she now has 3500 emails to sort through...So apologises if she misses one or two of them haha! (Although most of them were facebook notifications...) eerrmm, what else? I'm guessing she will be updating the blog again herself soon :-D With me just posting when she is too busy to do so


And thats about it!
Hope everyone reading this is well, and id like to say that if Rach starts blogging herself again, then its been more than an honour keeping you guys up to date on her progress over the last 7 weeks, and if I had to, id do it again in a heartbeat for her, no question



***Fantastic Update 29th April***


Rach FINALLY has her Trachy out and can speak ! She has been waiting AGES for this step, and its finnally happened. This means, she can now SPEAK (And as a result, her Doctors and Consultants have said they want to take their Annual leave haha!)
Hopefully this will also mean she can go on the Transplant ward soon, which will mean less intensive treatement (but still alot of work to do) and a bit more freedom, and of course, its one step closer to the front door...


She is clearly VERY pleased with this, and in her words, she says she *Feels more human* haha yay :-D


And there it is. The update so many people have been waiting for, least of all,Rachy herself of course !


***Update 26th April***


Rach has had a busy day today ! Another Bronch today, took it out of her a fair bit (Completely understandable, its certainly not a walk in the park) Her pseudo is being stubborn so they are thinkign of trying another IV to kick its arse, which although Rach isnt keen on them doing that, she knows they know best !


Not really much more to report im afraid. They plan on getting that Trach out this week but they need to build up to that, and we will only know if thats viable if all goes to plan, so in no way is it certain ! But fingers crossed guys.


I realise she is taking a long time to recover, but please remember that this is a HUGE thing she has been through. Whole new lungs, a whole new body part. Every new thing has its gremlins in the works right? No new buiseness has ever been flawless, no car has ever been built and not had defects that take time to work out. Thats all this is right now....think of them as just bugs in the system. When the docs and Rach know what do do about them, she will fly out of there :-)


Night all, long day !

***Update 24th April***


Rach has just sent me a GORGEOUS pic of herself, so I thought it was time for another mini update and PICTURE :-D


Rachy needs (In her words!) *Sticky up lung thoughts* as her right lung refuses to stay inflated when she breaths on just O2, damn naughty lung ! So send her those please ! Cant hurt right?

Other plans are, overnight vent until they can come up with a plan to get that right lung working, and she had another blood transfusion today ! Busy day for her (Arent they alwasy busy!!) but she clearly has a huge smile on her face !

And here it is:

***Update 23rd April***

Todays Update is in Rachys words, as it very simply explains how she is ! So:

And they wonder why I'm not hungry! (See picture)
Bronch yesterday went well, no real changes it just left me feeling a bit sore. Team are cracking the whip now keen to press on pushing me to do as much breathing on my own again (so far I've managed 4hrs in a day) and of course eat and get back on track with physio! All in all is steady progress and their happy the lungs are getting over the latest infection and functioning well!

Clearly she is ready to start working on getting out of there after her minor setbacks of late, so here's hoping she continues that way ! Im sure she will :-D

***Update 22nd April***



Today is Rachys 6 week Transplantaversary!


Hey again all !


Rachy has had another good day today. She seems to be on the right track in beating the psudo on her chest, and they are hitting it with a whole barrage or antibiotics which should do the trick ! Xray is much improved on last time,a nd she is having a routine Bronch tommorow just to see how things are. After that, they should be pressing on with getting her trachy removed from her throat so she can finally chat !



She is her normal smiley, VERY cheeky self again it seems, which is obviously a huge indication that this massive risk was all worth while (of course!) .


Head of transplant popped in to see her, and made a comment of *Leave that feeding tube in, it suits her* (Jokingly) to which she replied with a...hand, gesture back to him, having the entire medical team, and Head in Tx in fits of laughter hehe :-)


Thats the Rach we know and love i think!



***Update 20th April***


Hey all


Pete back to blogging again, as Im out of hospital and Holly is away for now!


Rach had a good day today, Xray looked better so no need for another Bronch (See earlier mention of Bronch to find out more about this!)
She has started walking and being weaned off the vent again after the last few minor setbacks in doing so.
She says Microbiology are happy she is on the right Antibiotics for Pseudomonas, which i know from personal experiance, can be a pain in the .. bum, to get rid of ! But in Rachaels own words on FB recently:

"Feeling better, kicking some pseudomonas butt"

Hehe and why not indeed !

We also found out recently that a VERY nice person has offered her free driving lessons, as a result of reading about her story in the paper, for her to take up whenever she needs ! What an amazing person huh?

I sent a message to him thanking him and saying it will mean ALOT to Rachy when she is out of hosp, as she is VERY independtant when she can be (Read that as stubborn hehe, but in a good way!) and his reply was this:

"It is a small thing Im doing compared to all Rachael Rachel does. I am so happy to help such an inspirational Lady. Thanks for the Message"

Cant get better than that right??

Anyway, keep well all, and I'll update next time I hear anything :-) and of course will keep those pictures coming as and when she sends me them!

***Update. 15th April***

Hey Holly here again... Not much news since the last update really, Rach still has a bit of infection in her new puffers but the fab transplant team are onto it with strong antibiotics and regular bronchoscopies. The doctors still remain happy with everything and Rachy is keeping the physios on their toes by working on improving her lungs.

I am in regular contact with Rachy and her Mum, they are both in good spirits and are grateful for all the well wishes. Rachy is being her usual mischeivious self and was telling me how she managed to cough out an NG tube this afternoon, which of course she found hilarious, not just at the fact of coughing it out but for getting the physios in trouble for it! Typical! So Rachy's naughty antics continue.... Stay tuned...

Even from her hospital bed, Rachy is still doing fab work in promoting Organ Donation. Click Here to read an article that was in her local paper today!

Just a last note, please could you try and refrain from sending private messages to Pete/Kiz as he is in hospital himself and cannot keep up with them, so the sole point of information will be this blog. Please do comment and leave Rachy some nice messages, I know that she will read them when she can, and it will be lovely for her to look back on when she is home and back in the blogging world!

Watch this space for updates, Much Love

Hol x


***Update. 9th April***

Hey everyone, It's Holly Shaw here! I am responsible for Rachy having the magnadoodle (see the picture in the below post) I bought it for her as I thought it would be useful while she has her tracky in and can't communicate as much as she would like to... although I do hope she hasn't been writing too many rude messages on it!

I'm in regular contact with Rachy and she has asked me to update you all... which I am only too happy to do!

It's one month since Rachy had her transplant surgery and she is constantly thinking of the donor and their family, knowing that its only because of them that she has been given this second chance. She is spending more or less all day breathing for herself on just oxygen with a small amount of ventilation overnight. The fantastic transplant team at Wythenshawe Hospital are working hard and encouraging her to eat. Rachy has a little bit of an infection at the minute which is not uncommon at this stage of the recovery process, so nothing to be concerned about.

As above there was a new article in the Manchester Evening News about Rachy and you can read it here, she looks fabulous don't you think!

Here is another photo for you to keep you going... What a super smile!


So all in all, she is a superstar and is doing fantastically well! Keep doing what you are doing hun, I am so pleased and mega proud of you! Much Love x

Rachy in the news

Kiz again :-)

Didnt want to clog up the update post with other bits, so Im making a new post for this one !

Rach was in the Tamside Advertiser today, check it out in the link below :-D


http://www.tamesideadvertiser.co.uk/news/s/1201507_pms_get_well_soon_message_to_rachael

Shock and Awe (She got the call..)

**10.00 AM 10/03/2010**

Hey all

Its Pete blogging here on behalf of Rachy

Just an update (Huge understatement) and what could be the biggest update in the history of this blog :-D

Rachy just got her call !!

She is currently sitting in hospital, gown on and drugs down, waiting to hear if the assessement of her potential lungs from the donor are good and if they are, they can be sent her way !


All hinges on how the lungs of the donor are at the moment, so PLEASE keep everything crossed and I will update the second I get any more info at ALL (Il be updatin this post with edits so please bookmark this and keep checking back today!)

Heres a pic of our Rachy taken about an hour ago for you to enjoy !


*****UPDATE AT 17.00*****


She is on way to theatre now, its a go !


****UPDATE 18.30****

Rach is now in theatre, under anaesthic and its all systems go. Will be many hours, Probably tommorow before any more updates recieved so please keep her in your thoughts as she goes through it tonight :-)

Her mum has added, please try not to send any messages to her phone as it is full to bursting already ! Stick to FB etc, but keep in mind she will not be able to reply in any way and all updates will appear here. :-) . Well done Rach XxX


***** UPDATE 4AM *****

Pleased to say that Rachy is now out of Theatre, Docs are happy it went well and she is now in ITU. Her Mum says she did have a seizure before she went in, but id like to stress that they are pretty common for people going under so its nothing to worry about :-)

Now begins her recovery process of course, she still has a long way to go and it will in no way be plain sailing from here on in, but all things so far looking positive !

Well done Rachy, we are all with you while you recover, and look forward to hearing from you yourself soon !

**Photo Update 14.30 11/03**

No other news to report, but a photo from Rachys Mum was sent to me a while ago, so here it is (with her permission) Also Northwest News will be featuring the latest on Rachael at half 6 tonight :-)




****Update 12th March 2010****

Morning all. Todays update so far is Rach Opened her eyes for a little bit earlier, gave a thumbs up to her mum and went back to sleep again :-) along with the update is the below picture (As always, with Rachaels mums permission)




***UPDATE 12th March 2010 12.30***

Rach is now off Ventilator :-D Photo to follow later in the day :-D



**Message from Rachaels Mum**

She says thank you all so much for the messages, and she is happy for you to keep sending them, BUT, obviously because of the sheer volume she may not reply to them all :-) but thank you again from her :-)


For all those asking where to send Rachael cards etc ! Address is:

CTCCU
Wythenshaw hospital
Southmoor Road
Manchester
M23 9LT

:-)


****UPDATE 18.00 12th March 2010****

Rachy has had a few set backs in the last few hours. Her Oxygen SATS have dropped to 90 as her lungs arent co operating as much as they would like them too. She was taken off of the epidural because it was making her lungs *tired*, basically.

Since then, she has had to go back on the ventilator as they have found that her lungs are full of fluid and they need to decide what to do next.

Rachys mum says to let you all know she cant txt everyone with updates or txt back much at the moment.

Id like to point out that setbacks this close to a transplant are fairly common and it in no way means the worse (As I should have pointed out when I updated earlier)
Everyone has set backs, and Rach will pull through this one :-)

Rach does however, need Positive thoughts more so now than she did earlier today, so please send them that way, and il update as soon as I know more.


**Just a note from Kiz** 20.00 13th March 2010**

Just a note to say that Rach is currently sedated and still on her vent, and will probably stay that way over the weekend at least, so she can bond with and get to know her *New friends* Better.

During this time I wont be updating unless anything happens that you need to know about :-)

****No real updates at this time :-) 10.00am 17/3/2010****

Just to let everyone know, there's been no real changes in Rach. She is still on vent, Docs are still happy with her and she is stable. She opened her eyes for a few minutes on Monday, but other than that, all quiet. Id like to say, that if its not in this blog, then there will be no more news to be updated, and I promise you, it will go on this blog within hours of me being told, always :-)


Kiz

****LARGE Update 16.00 17th March****


Rach has been awake and communicating today, asking questions and managed a smile too ! First Proper day she has managed this since the Tx, so, yay !


****Update 19th March 2010 19.00*****

Another good day for our beautiful Rachy ! Docs are VERY happy with her indeed.
She is still on Vent and Trach but vent has been turned down (Which means she is less dependant on it now than she was) which is fan-TASTIC :-D hehe !
She also managed a brief Twitter update saying :

"Has the most amazing friends, support and doctors, recovering well from my double lung transplant"

Which is the first tweet since 10th March from her :-D

Heres a picture of her holding a card from Sarah Brown of No.10 , with her trademark smile of course !!

**Sat 20th March 2010**

No real Update, she has slept most of the day and gifts are starting to trickle in (along with alot of cards obviously !) Please remember not to send flowers if you are thinking of sending a gift of any kind as they can pose a risk to Lung patients because of the bugs the soil can contain :-)

Thats about it !

**Good Update, Sunday 21st March 2010**

Rachy managed half an hour breathing on her own today, which is clearly fan-TASTIC ! Also Managed to eat an Ice lolly, and even managed a txt to me! Still a long way to go, but she is clearly getting there, so well done Rach ! Litrally could not be happier for her :-D

Rachy with her first Post Transplant Meal !



***Update 23rd march 2010***

Rachy managed 90 minutes today breathing un aided (other than 02) and, I quote, she *Found it a breeze!* hehe ! Even did some marching on the spot today, *YAY lungs* she says ! Needed a bit of physio too but thats nothing really is it ! Heres a pic of her, finnaly in her OWN nighty which she is very pleased about ! Enjoy !



**Small update 24/3/2010**

Rach Managed 2hours on just 02 and her Trach yesterday. Doing SO amazingly well, everyone is pleased with her ! Not much else to update other than she seems happy at the moment, and loves all the cards and balloons you have all been sending (she does LOVE balloons hehe!)

And a photo of her first walk since Tx !



**Photo update 26/3/2010**

Another Pic of Rach, looking AMAZING ! You can also see the top of her brand new scar here :-D



And another pic here...






**Small update 29th March**

Not much to report, but people are asking so here we go !

Rach is still slowly improving, and Doctors are still happy with her. She is still getting tired a fair bit but thats completely expected, she has after all got brand new lungs :-D

Really not much more to say, will update when she starts showing more improvement, as for now she just needs a bit of rest, its been a busy 2 weeks !!!

**Update 30th March 2010**

Just a note to say Rach is doing well, has had a fairly good day today. Fingers crossed that they will keep reducing the need for the trach and vent (which they have been doing today) and hopefully by the end of the week (maybe) they can change the valce in the trach so she can SPEAK again. Can u imagine that, Rach not speaking for nearly 3 weeks?! She is gonna have alot to say.....Love ya Rachy XxX


**HUGE update 2nd April 2010**

This is a message from Rachaels mum which she posted on FaceBook 20 minutes ago. She says it best so May as well go with it!

"What a fantastic easter friday, Rach came off the ventilator today and is breathing on her own, with just a little bit of oxygen, WOW, still on the trachy but that should soon be out in a couple of days. She just wants to talk now but can't at the mo, shes still on intensive care, YAY xx"

She also managed her first full meal today, Sausage and spaghetti *Dances*

I think that says it all really !! Im SOO Looking forward to a voice mail from the lovely lady herself when she gets her voice back..best thing ever.

(And a photo for you here !)



And one more...




*** No news is good news 5 April 2010***

Hey guys. Just to tell you that no news is good news lately. Rach is feeling good and getting on with things needed to strengthen her lungs which is fantastic :-D But no major updates to report yet ! She MAY Get her trach out this week if she is lucky, finnally enabling her to talk (She hasnt managed that bit yet)

She did have one minor mishap today and managed to inhale a drink...But apart from that she is doing well !!

Updates may become less frequent now as she has hit a few HUGE milestones, but of course I'll update you with everything I can until Rach is able to do it herself and take back over !


***Update. 8th April***

Again Not a huge deal to report, she is doing well, and slowly making good progress! She was in the manchester evening news today if you want to try and find that article! And thts about it!


KEEP UP TO DATE WITH THE LATEST NEWS ON RACHY HERE IN A NEW BLOG POST. THANKS x

A quick note

Just a quick blog. I am reading your messages of support, every single one of them. Thankyou so much. I will hoepfully get round to replying soon.

Rachael Wakefield on BBC North West Tonight from Live Life Then Give Life on Vimeo.

The above BBC interview, not easy but I hope worth it. Have a read about that here I'm again in the local newspaper this week. Will keep you posted.

transplant clinic

I had transplant clinic today. Recently I've been feeling a bit rotten to say the least, no energy, no appetite, a blank mind, low oxygen levels and a fast heart rate. This morning I felt like it was a struggle to even move any distance. From getting up to take my medication I had to lie on my bed before I could even think about getting dressed. I felt so bad this morning that I honestly wondered how much longer I could go on for. With help I managed to do what I needed to and go to transplant clinic. Once seated I rested my arm on a TV stand and closed my eyes from exhaustion of getting from the car to the waiting room. One of the transplant co-ordinators came to take us round to see my consultant and a look of concern instantly came over her face. The appointment was quite brief with a quick summary of what’s been happening, how much I now need my NIV and how much pressure its taking to inflate my lungs and how unwell in general I've become recently.
To sum things up, my time is running out. Without a donor, I'm going to die, soon.
As difficult as it was to hear that I was in that much of a haze from how unwell I'm feeling it didn't have that much of an impact because I thought 'yeh, how I'm feeling right at this moment I can believe that'. I left with the image of my consultant crossing his fingers; he was crossing his fingers for my life because that’s all he can do now. In the waiting room on the way out I broke down into tears.
Please, if you believe in organ donation sign up to the register it takes literally 2 minutes and you can do it online, my life and the lives of thousands of others depend on it.