Omega Owners Forum
Chat Area => General Discussion Area => Topic started by: feeutfo on 16 April 2012, 15:29:24
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...as some here know, Amy has Cystic fibrosis. A genetic condition affecting lung efficiency, at best, at worst an early death by mid teens. She's been in a bad way for the last couple of years, ESP the last 6 months, and almost passed away just before Xmas, age 30. We, and she, where wondering if she would ever leave ICU. She said to me on a bad visit, in pain and barely able to breath..."I don't want to die in here"
On Saturday mid morning we received a Phone call. After 6 months in The Brompton Hospital London, she was transferred to Hatfield Hospital on Sat night. I can barely believe it, but she received a Lung transplant in an operation lasting 12 hours or so.
After a period of silence until she stabilised, can now inform everyone.
She is doing very well, no complications, and can now breath. I don't know what to do with myself. ;D :'( ;D :'(
Er... "Thanks for reading" ...I guess. :-* :y
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Awesome news Chris :y
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Great news wishing her all the best :y
And a big thanks to the donors family :y
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A very heart warming story. Wonderful to hear of a young person who has obviously suffered terribly to be given a new lease of life.
Worth a hundred times more than the biggest possible lotto win for all concerned I would imagine.Hope her future is more than happy to make up for the years of suffering.
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Fantastic news Chris. :y :y :y :y
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Wishing her all the best Chris. Obviously not been an easy time for you either so chin up, fingers crossed things are looking up. :y
Regards
Alan
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Excellent news :y
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Great news, give her all our best wishes.
Ken
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What a journey - best wishes to her and to your family in dealing with such a huge challenge. She deserves all the luck in the world to get through this after such suffering
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excellent news :y
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Brilliant news Chris :y
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Thank you Gents. As you say Mark, thanks to the Donors family.
Not sure it's the correct thing to do to approach them, we wouldn't be allowed I'm sure. But thanks to them anyway.
I'm on the donor register somewhere. Must check. Weather they'd want my spares I'm not sure. ;D
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Thank you Gents. As you say Mark, thanks to the Donors family.
Not sure it's the correct thing to do to approach them, we wouldn't be allowed I'm sure. But thanks to them anyway.
I'm on the donor register somewhere. Must check. Weather they'd want my spares I'm not sure. ;D
You may well be able to, it depends on the donor's family.
I lost my younger cousin some years ago to a sudden brain hemorage, his parents decided to donate his organs and the letters they have received from the recipiants mean an awful lot to them.
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That's great news, Chris! Long may her new lungs provide her with good health :)
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Heartwarming stuff Chris - brilliant news. :y
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Really glad to hear this, Chris. Excellent news. :y
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How heartwarming to read Chris, what a great outcome for you :y Here's hoping for a bright future for you all :)
As Mark says, thinking of the donors family :y
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Brilliant news and wishing your sis a get well soon :)
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Great news mate wish her all the best
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This IS bloody good news Chris! I fervently hope her recovery is complete and she can at last begin to live a full and happy life. Best news i've heard in a long time!! :y :y
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Fantastic news Chris! :y I know it will be a relief for all of you. Wish Amy all the best from both of us and a speedy recovery!
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Many young lives have been blighted by CF and the toll on both the sufferers and their families cannot be quantified in any reasonable way, so this news of Amy's chance to be free from it is not only welcome but is indeed humbling.
My very best wishes to her for future good health - and a special thought for the donor and their family (and all other such donors) for what can only be described as the selfless act of providing a means where the health of others can be restored and life renewed.
I should also add that my admiration for the health professionals who give of their expertise to help those in need - especially in these circumstances - cannot be overstated.
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Excellent news mate :y
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excellent :y and wishing her all the best with a better quality of life
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Great news. Wishing Amy good health for the future :y :y :y
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Very glad to read some great news for a change, thanks for sharing this and here's to wishing your sister the very best and a long, happy life :)
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Great news Chris,wish her well from down 'ere :y :y :y
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Excellent news Chris .........
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some very good news for a change.... :y...i am on donor register too very worth while cause :y
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What great news Chris - Brilliant :y :y
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fantastic news chris all the best to you and your family :y :)
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Great news all the very best :y :y
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:y :y :y absalutly brilliant good luck to you both :y :y :y
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I am glad to hear this.. tell her my best wishes :y
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Fantastic news Chris, all the best to her (and the rest of you) from MrsGK and I :y
Being on the donor register is a no-brainer*, I firmly believe it should be opt-out rather than opt-in...
*no pun intended
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Very happy to hear the positive news! All the very best for the future :y
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Great news Chris.......... :y :y
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Thanks guys, still trying to get heads around it amongst the family. It's quite incredible. And happened so quickly. We where prepared for a roller coaster ride on the transplant list, but this has saved all that. Wow.
Mr GK. couldn't agree more. :y
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All the best wishes to her and lets hope she is now on the road to recovery.
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Very good news. She wont need any of those horrible antibiotic courses anymore. :y
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Brilliant news Chris, thanks for sharing :y
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Not being around for a few days so I've just seen this thred :(
Absolutely fantastic news Chris :) :y
Well happy for her and all your family.
How many on here are on the doner register ?
Got to admit, in my younger years I never gave things like this a thought but when I renewed my driving licence 2 years ago, I ticked the "the box" and as far as i'm conserned if any of my bits are of use the quacks can have them :y :y
Some of my family did not like the idea but at the end of the day, i've only got one life and when i'm gone, i'm gone so if I can help someone else live .............. happy days :)
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Really great news Chris,what a massive life changing ++ for sister Amy,you and all your family :y :y :y :y :y :y
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I read this thread last night, absolutely brilliant news, thrilled for you all :y
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Extremely good news!! :y :y
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I started to read this thread with a sinking heart and ended up feeling uplifted by the happy ending!! :y Thanks for sharing this with us Chris, I'm sure its made everyone who's read it smile!! :)
The results from transplants are amazing these days. My cousin had a heart and lung transplant when he was 18. He's now 46, has led a full and busy life, which has included holding down a demanding job, marriage and 2 kids!! :y :y :y
All the best to your sister!! :) :) :)
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Brilliant news Chris! Another story to prove that advancements in our healthcare do still happen and, of course, highlighting the importance of the doner system. Very best wishes to your sister and hope all continues to go well :y
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Good news indeed :y
Wishing her a speedy recovery :y
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Yeah, like others Chris, I thought this was going to be a bit of a heartbreaker, so chuffed for you and your sis mate.
Bloody brilliant news!
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Only just seen this Chris, I usually give your threads a miss.
Fantastic news. God bless her.
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good news chris
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Fantastic news Chris :)
Best wishes to Amy, you and all your family :y
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More kind words, thank you. :)
Here is Amy. Doesn't look unwell does she. Taken just after a gig I believe. She is a Drummer.
(http://i344.photobucket.com/albums/p326/chrisgixer/6014de4e.jpg)
What's not so obvious is prior to, there would have been about 8hours Physio and treatment.
Not any more. :y
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THAT is NOT your sister Chris! She's FAR too good looking! ;D ;)
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8) :y
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I am delighted to hear this at long, long last. I know that a few short months ago it was looking very, very dark, with no light at the end of the tunnel, even to the point that if a suitable set of lungs had become available, she wouldn't have been well enough to survived the op.
So this is fantastic news, and, although she still has many challenges ahead, must be a huge weight lifted off the gixer family.
I think it warrants a small celebration, so I'm going to open a bottle, and raise a glass. To Amy. :) :y
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To Amy. Wooooohooo. :y
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I am delighted to hear this at long, long last. I know that a few short months ago it was looking very, very dark, with no light at the end of the tunnel, even to the point that if a suitable set of lungs had become available, she wouldn't have been well enough to survived the op.
So this is fantastic news, and, although she still has many challenges ahead, must be a huge weight lifted off the gixer family.
I think it warrants a small celebration, so I'm going to open a bottle, and raise a glass. To Amy. :) :y
raise a glass. To Amy
I have no hesitation in seconding that. :y
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I am delighted to hear this at long, long last. I know that a few short months ago it was looking very, very dark, with no light at the end of the tunnel, even to the point that if a suitable set of lungs had become available, she wouldn't have been well enough to survived the op.
So this is fantastic news, and, although she still has many challenges ahead, must be a huge weight lifted off the gixer family.
I think it warrants a small celebration, so I'm going to open a bottle, and raise a glass. To Amy. :) :y
raise a glass. To Amy
I have no hesitation in seconding that. :y
and ill third it keep us informed on amys progress :y :y :y :y :y
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I was due to visit today, but didn't go. Even though I was almost passing the door to drop some wheels off to be refurbed. Somebody at work walked into the canteen with a stinking cold, announced she had a cold and the sneezed over everyone. I started to get a tickly nose by 2pm.
No way am I visiting and giving Amy a cold.
Plus the M40 was shut north bound so the whole area was buggered, as it happened. So brother visited instead. I'll see how I am tomorrow and maybe visit then. Or not.
But news is good. Two of the four chest drains removed, in pain fom the op, but all is well so far.
Historically she hasn't come off Morphene well in the past. I think they are going to swap here over to another pain killer, try and minimise the withdrawal, which seems to be hellish with most people I've known to have major surgery.
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:y :y :y :y :y :y :y :y :y :y
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I don't know either of you,but would just like to say its great when in such situations there is such good news life is a precious thing and someone was looking after not just amy but all her family so best wishes to you all! :y
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Thankyou for your kind words of encouragement.
Update. She's up and walking. :o
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BRILLIANT :y :y :y :y :y
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The Harefield is very good. We refer most of our CF patients there as well. :y
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Thankyou for your kind words of encouragement.
Update. She's up and walking. :o
Fan - bloody - tastic! :y :y :y
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Great news Chris..... :y :y :y
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Visited today, all too brief, she's tired and they challenge recovery with minimal pain relief where possible as it aids recovery time, or so Dad was saying. She was on the bed, talking with tracky disconnected, no ventilator support, discussing meds with nurses.
She said she laughed earlier, and was amazed how long her laugh now was. Referring to the volume of air from her new lungs. Must admit I might have shed a tear. ;D
Her Physio from the Brompton came to visit, she was on site in Harefield anyway. Couldn't believe it either, as she knew how little lung capacity Amy had previously. "Amazing isn't it" she said.
I am knackered myself now. :)
May visit tomorrow, if we can get a "visitors slot". Everyone wants to see her. :)
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Stop it Chris ::) ::) Making me cry :y :y :y
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Stop it Chris ::) ::) Making me cry :y :y :y
same here its great to see that amys getting on well with her recovery
give her a hug from all the ozzys
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not been on for a while best wishes to you Amy and your family excellent news very happy for you all.
must have man flue coming sniffing a bit :'(
best wishes me wifey and doggy :y :y
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Brilliant news, I wish your sister Amy a long, successful and very happy life. :y :y :y :y :y :y :y :y
I'm sure this great news has lifted a very heavy weight off you and your families shoulders. :y :y :y
A big thank you to the donor for making this possible, along with the dedicated medical staff and the miracles of modern medicine.
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Thank you, it really is incredible.
Today she has been mostly...
...on an exercise bike. 7 days after surgery !
Now sleeping without oxygen support. Eating for England. Full meals without help. Sat up in a chair laughing and joking earlier. New tracky fitted.
Some down sides, suppressing the immune system to prevent rejection means she has to be very careful. No sushi, sea food, red stake, blue cheese. Anything that might cause food poisoning for us will have far more serious consequences for her. Avoiding crowded places for the first few months until she's more stable etc.
As we are a family of stake lovers, she's disappointed her stake must now be cooked medium, with no blood.
We managed to set het Lappy up for 3G via iPhone hot spot. She had read the first page of this, we left her to read the rest. She is touched, and thanks you all. :-*
She might reply when she's feeling stronger. :y
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Keep the updates coming :y It's great to hear such good news.
Anyway, she's better looking than you and I hope I'll we'll get to meet her at some point :y ;D
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Good news Chris, must be a great relief for all the family.
Best wishes from us all for a speedy recovery Amy. :y :y
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Most of the family where there today. The relief is massive. They are exhausted, but delighted. :y
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great to hear shes doing so well, all the very best to her from burton on trent. :y
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:y Must be such a relief. Sounds like she'll be running around and eating blue steak in no time at all :)
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Please accept/pass-on our sincerest "Valleys best wishes" from the Seths to her Chris - and also the same to everyone involved in this great episode.
'Tis fantastic news indeed! :y
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Today she has been mostly...
...on an exercise bike. 7 days after surgery !
:o Sounds like most of us could stand to learn a thing or two from her in terms of grabbing life by the scruff of it's neck :)
Keeping my fingers crossed going forwards for a continued meteoric recovery :y
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Great stuff Chris
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Phew! I read the bit about no steak, and thought that was a bitter pill to swallow. But then saw that cremated steak was probably OK. For the sake of allowing me to live, I could tolerate brunt steak. With chips and onion rings, obviously.
Now, tongue-in-cheek comments aside, forgive my ignorance on such matters, but does the body learn to not reject new organs over time? Or is it anti-rejction (and thus anti-immune system) drugs forever? If so, does that mean Amy has to avoid any future illnesses in the future?
Also, is a new set of airbags a complete cure for CF?
If the gayPhone Hotspot doesn't work too well (long term, the phone heats up, and then shuts down), I have a 3G dongle here she can borrow for weeks/months, though dongles obviously need a separate SIM.
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I asked some of those Questions, there's a proverbial Elephant in the room so far, nobody seems to have had time to ask. Allowing the process to evolve at Amy's pase might be governing that. We had a wonderful visit yesterday getting heads round things as a family group. The amazement being primary, but for Amy up until mid week, I wonder mentally has there been much change to her position, a hospital bed is a hospital bed. The pain and duscomfort is still there from the op, which replaced the pain and discomfort of the old lungs. As Albs said at the start, the pain and suffering should soon end. Once she's more comfy the brain can start to process things I guess.
Things like, the future. Rather than just the next 24 hours. I suppose. A job perhaps? Money? Go places. Do things. The band. Touring.
They have a Physchologist come round. The emossional angles to it all for her and the family are ... well, massive. But as Dad said, remaim calm and carry on. ;D
Some old symptoms remain, the pancreas gave up when she was 15, so a substitute is taken at meal times do aid digestion. The dietician is monitoring that, to get a new base line to work from.
She is diabetic as well now, so sugar levels and insulin will remain.
But, she can breath. The most basic thing, has returned.
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:y :y :y hi chris
tgisz is great news that amy is progresing so good
ive been a diabetic for 27yrs its beter to be a diabetic than not been able to breath
and its not that bad realy its amazing that amy is recovering so well brilliant :y :y :y
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Sorry, only just had chance to read this thread properly.
That's excellent news, please wish Amy all the best from Jane and I.
PM Sent. EDIT: Will be when you empty your inbox! :)
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Done, sorry. Creaps up doesn't it. :-[
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You sure she didn't do the marathon this morning and then slip back to the hospital ;D ;D
Having said that I thought about her this morning when they interviewed a chap running 5 years after his lung transplant :y :y
Keep up the great recovery :y :y
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great to read the update Chris and share the good news thoughts with you all :y :y
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Phew! I read the bit about no steak, and thought that was a bitter pill to swallow. But then saw that cremated steak was probably OK. For the sake of allowing me to live, I could tolerate brunt steak. With chips and onion rings, obviously.
Now, tongue-in-cheek comments aside, forgive my ignorance on such matters, but does the body learn to not reject new organs over time? Or is it anti-rejction (and thus anti-immune system) drugs forever? If so, does that mean Amy has to avoid any future illnesses in the future?
Also, is a new set of airbags a complete cure for CF?
Poorly cooked meat ie: rare etc carries a risk of salmonella and a few other types of food poisoning. which when recovering from a transplant is not ideal.
The anti rejection drugs will be long term. If anything the body tends to identify the transplanted organ better over a period of time.
New lungs dont cure CF. It does cure the most significantly affected organ, the lungs. The improvement in quality of life post transplant is significant. Plus you dont have to do physio, nebulisers, pulmozyme, antibiotics etc for the lungs. which means you can do other more fun things during that time.
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Phew! I read the bit about no steak, and thought that was a bitter pill to swallow. But then saw that cremated steak was probably OK. For the sake of allowing me to live, I could tolerate brunt steak. With chips and onion rings, obviously.
Now, tongue-in-cheek comments aside, forgive my ignorance on such matters, but does the body learn to not reject new organs over time? Or is it anti-rejction (and thus anti-immune system) drugs forever? If so, does that mean Amy has to avoid any future illnesses in the future?
Also, is a new set of airbags a complete cure for CF?
Poorly cooked meat ie: rare etc carries a risk of salmonella and a few other types of food poisoning. which when recovering from a transplant is not ideal.
The anti rejection drugs will be long term. If anything the body tends to identify the transplanted organ better over a period of time.
New lungs dont cure CF. It does cure the most significantly affected organ, the lungs. The improvement in quality of life post transplant is significant. Plus you dont have to do physio, nebulisers, pulmozyme, antibiotics etc for the lungs. which means you can do other more fun things during that time.
:y
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Visited today.... there where some tears last night apparently, after an off the cuff discussion with the nurse, it became clear she would NOT need to do 6-8 hours of Physio a day.
Tears of joy I might add. :y
Thanks to Mr and Mrs VXLV6 by the way. And all of you for your thoughts. :-*
Have to say I've shed more tears since the transplant, than when she was unwell. :-\ ...I'll try not to think about it too deeply. :)
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What a Brave Soul. Hat's off to you Amy. I'm sure for all your family it must be a very topsy turvy roller coaster ride. Here's wishing you all the best. :y
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Things like, the future. Rather than just the next 24 hours. I suppose. A job perhaps? Money? Go places. Do things. The band. Touring.
So .. OOF outing to see her the first gig she plays once she's out? :)
Or is that just creepy .. ;D
Glad she's still doing great, though :y
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What a Brave Soul. Hat's off to you Amy. I'm sure for all your family it must be a very topsy turvy roller coaster ride. Here's wishing you all the best. :y
It is, but could have been so much more so. There was a tv programme, Love on the transplant list, about a young couple and thier family's almost hellish path to a new set of lungs for their 30 year old daughter with cf. Just happened to be a poll dancer btw.
Her lungs had degraded terribly, no capacity what so ever, sedated on life support. Family watching the ventilator figures drop through the floor, and no news of any organs available. Death looked certain.
Then news comes through, lungs available, all prepped for the op as they only have an hour before they degrade. Family delighted. A ray oh hope...
....nope, can't do the op. lungs are too big. They'd never fit in a million years. Family go back to dispare ( and I presume another family get the lungs with a more suitable patient ) by which time daughter is almost passing away in front of them, nothing to do except wait and hope.
Then finally, another pair of lungs available.... They fit, are suitable, op goes ahead, she lives, and is out of hospital in 5 weeks doing cartwheels in the park with her boyfriend and the dog.
Having seen that we where prepared for similar, possibly. Imagine the conversation then, a week ago Saturday morning, when Dad rang to say, after a long description of events that we already knew, that Amy was in theatre undergoing a transplant as we spoke. I've not often been shocked in life, but that was definately one of those times. Disbelief. Relief. Worry. Jubilation. Concern.... Nope, stay calm and carry on. ;D
Roller coaster ride? Yes, but could have been a lot worse. :y
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Do you mind Gayboy... You just brought a tear to my eye and a lump to my throat :-[ ::)
Although I've not (yet) had the pleasure of meeting the lovely Amy, which I'm sure will happen in the (now much brighter) future, I do feel close(ish) to her battle through the conversations I have had with both yourself and H. I know how hard it has been for you all and am really pleased that things are improving so well. Perhaps you'll bring her along to one of our future curry opportunities so she can meet some of the reprobates who are wishing her well and rooting for her in the fight for fitness :-\
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Chris, I have just read this.. jesus what do you say.. So all I can say is best wishes and heres hopeing for a quick recovery :y
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Do you mind Gayboy... You just brought a tear to my eye and a lump to my throat :-[ ::)
Although I've not (yet) had the pleasure of meeting the lovely Amy, which I'm sure will happen in the (now much brighter) future, I do feel close(ish) to her battle through the conversations I have had with both yourself and H. I know how hard it has been for you all and am really pleased that things are improving so well. Perhaps you'll bring her along to one of our future curry opportunities so she can meet some of the reprobates who are wishing her well and rooting for her in the fight for fitness :-\
Man up wet pants! ;D
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Do you mind Gayboy... You just brought a tear to my eye and a lump to my throat :-[ ::)
Although I've not (yet) had the pleasure of meeting the lovely Amy, which I'm sure will happen in the (now much brighter) future, I do feel close(ish) to her battle through the conversations I have had with both yourself and H. I know how hard it has been for you all and am really pleased that things are improving so well. Perhaps you'll bring her along to one of our future curry opportunities so she can meet some of the reprobates who are wishing her well and rooting for her in the fight for fitness :-\
Man up wet pants! ;D
;D ;D ;D ;D
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Trackiotomy plumbing removed today. More talks with phsychologist. Evolving the pre op mind set to post op optimism is a massive step.
Diabetes is neither 1,2 or 3. But something specific to sf patients. Spleen packed up long ago so I guess it's related to that...? :-\
And I'm sure there's some spelling issues in that lot. :)
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Trackiotomy plumbing removed today. More talks with phsychologist. Evolving the pre op mind set to post op optimism is a massive step.
Diabetes is neither 1,2 or 3. But something specific to sf patients. Spleen packed up long ago so I guess it's related to that...? :-\
And I'm sure there's some spelling issues in that lot. :)
im sure well forgive you :D :D :D :D :D :y great news :y :y
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Trackiotomy plumbing removed today. More talks with phsychologist. Evolving the pre op mind set to post op optimism is a massive step.
Diabetes is neither 1,2 or 3. But something specific to sf patients. Spleen packed up long ago so I guess it's related to that...? :-\
And I'm sure there's some spelling issues in that lot. :)
Pancreas. I am sure her spleen is ok. ;) You are quite right, very specific to CF.
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Trackiotomy plumbing removed today. More talks with phsychologist. Evolving the pre op mind set to post op optimism is a massive step.
Diabetes is neither 1,2 or 3. But something specific to sf patients. Spleen packed up long ago so I guess it's related to that...? :-\
And I'm sure there's some spelling issues in that lot. :)
Pancreas. I am sure her spleen is ok. ;) You are quite right, very specific to CF.
;D Spleen/Pancreas, almost similar spelling. ;D
I've no idea what either one does tbh... ? :(
Apologies D, I never asked before, but there's clearly some experience behind your replies?
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I never asked Mark about his experiences either actually. :-[
Maybe over tin and a camp fire blast furness...? :)
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Looking at a possible release date. Possibly a week Friday... Ish. :y
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:y :y bloody hell chris thats great news shell be chasing you round the garden next :D :D :y
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No challenge catching me at the moment. ;D
Psychology is key now it seems. Pre op mind set needs to do a complete u turn.
There is/was a lot to worry about. There's also a lot she used to worry about that is no longer an issue. Bless her. Re calibrate time takes a while.
But yes, see how it goes. We may get a hick up yet. She's petrified of getting a chest infection or a cold. It is going to happen at some point, and she'll need to deal with it. They train patients for it to an extent apparently.
Have to say the staff have been absolutely first class. :)
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Fingers crossed for you all. I don't even want to imagine what you and your family have been going through and are still going through but sincerely hope this pans out to give her a decent standard of life. We smile and we joke but during the quiet times emotion kicks in and we can only hope and pray that things go as intended.
All the Best to you all. :y
Regards
Alan
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Have to say the staff have been absolutely first class. :)
Yeah, the NHS are always being slagged off, but a lot of them don't get the credit they deserve (assuming it is the NHS of course).
Glad to hear that Amy's doing well - she's a beautiful girl, and obviously full of grit and spirit :y
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Fingers crossed for you all. I don't even want to imagine what you and your family have been going through and are still going through but sincerely hope this pans out to give her a decent standard of life. We smile and we joke but during the quiet times emotion kicks in and we can only hope and pray that things go as intended.
All the Best to you all. :y
Regards
Alan
very well said Alan and excellent news Chris you read all this and other things melt into insugnificants ( admin we need a spell check please)you know what i mean
Well done Amy :y :y looking forward to seeing your brother more relaxed and smiley at the next meet :o :o :y :y
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I've not been to the Grand Canyon, but Amy has in her younger fitter days.
She said the experience was aw inspiring, and puts life into perspective.
As a family, i guess, this is our Grand Vanyon event.
A lung transplant.
They take Amy's lungs... out.... and put someone else's lungs.... in....
OH. MY. GOD.
;D
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If Amy is missing a Spleen tell her not to worry. I haven't had one for 5 years. It helps with the immune system but a tablet a day keeps the bugs at bay :y
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Good news. Let us know how things go.
And yes I work at one of the other CF units in London.
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Good man D. :y
Today, she has bean mostly, eating everything in sight, and ordering more food. We have a list. ;D :y
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Good man D. :y
Today, she has bean mostly, eating everything in sight, and ordering more food. We have a list. ;D :y
Excellent! Just warn her that if she gets too carried away she'll get a figure like yours :P ;D
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Thats Great news Chris, i hope she fully recovers soon. :y
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Should be going home on Monday all being well. :y
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Great news :y
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Great news for the family Chris. :y
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Should be going home on Monday all being well. :y
Excellent news :y :y :y :y :y :y
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absalutly amazing :y :y :y :y :y :y :y :y :y :y :y
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Can't believe it tbh. Iirc, that will be 3 weeks and 2 days. :o
She is apprehensive I think. She's been in hospital for 6 months I'm told. :'(
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Very good news indeed. :y :y
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Well, if she's apprehensive, the Doctors are not. Yesterday, after relaying some fears, completing a few tests, and exercises, there was a discussion!
After which the Doctors decided Amy should have a new task for the day. That being...
...go the pub and have, half a pint of Guiness! ;D
More than that, she had a pub lunch, and a dessert.
Drs orders I kid you not. ;D
Delay in discharge from hospital, due the bank holiday, is now on Tuesday. :y
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Great news hope she continues to do well!! have to be a weekly sunday treat to a carvery mate!!
& as they've been saying for years A Guinness is good for you!!! Well Her!!! :y
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;D :y
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That'll be for the iron ;) Guiness is high in iron and it's not uncommon for some doctors to recommend a little ;)
Excellent news though and I'm thrilled for all of you :y
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When I had my 10 weeks in hospital in Belfast in the 70,s we were given a can of guiness each every day.
There were 6 of us in the ward.One bloke (a well known bike racer with many many fractures in his legs)loved guinness the rest of us werent really bothered with the stuff,so he had 6 cans of guinness a day. ;D ;D
He got absolutely sh1tfaced one night and decided it was time for him to go home. The nurses had to physically restrain him from cutting all the strings to his traction. ::)
Happy days.Cant see it happening nowadays.
Great news about the girl though.Modern medicine can be a wonderful thing. :y
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Your news just gets better and better Chris so heart warming :y
I bet Amy can't wait to get home, and start her life anew, good luck and best wishes to you all :y :y
I hope the guiness came on a free prescription :D
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This is fantastic news Chris :)
Roll on Tuesday when she comes home, that'll be one very special day :y
Best wishes to Amy and your family. The BV family ;)
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Sounds like that Doc must of been the husband of one of the Nurses who was on my ward when I was in hospital after a wee bike accident. It was towards the end of my recovery. First thing in the morning the nurses came round with the menu. Well the food was particularly horrid that day so she collected all the forms in ripped em up and the 4 of us in the ward had Burger King that night with the Nurses. Was fab after 6 weeks of hospital grub!!! I hope Amy is really looking forward to going home I can understand her nerves your so nervous of the simplest things getting out of hospital is just the first step. I'm sure you already know all this :D :D
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Excellent, Chris. Really pleased to hear she's coming home. :y
Just a short step to go before she's drinking proper beer.
;)
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dont know what to say chris its so amazing brought a tear to my eye again
all the best to amy and your family for tuesday
if we all at oof could get to your pub i think we would all have apint with you & amy
good luck on tuesday
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dont know what to say chris its so amazing brought a tear to my eye again
all the best to amy and your family for tuesday
if we all at oof could get to your pub i think we would all have apint with you & amy
good luck on tuesday
As long as we don't have to drink Guinness! ;D
Continued recovery is great news anyhow Chris - good to hear she's still doing so well :)
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When I had my 10 weeks in hospital in Belfast in the 70,s we were given a can of guiness each every day.
There were 6 of us in the ward.One bloke (a well known bike racer with many many fractures in his legs)loved guinness the rest of us werent really bothered with the stuff,so he had 6 cans of guinness a day. ;D ;D
He got absolutely sh1tfaced one night and decided it was time for him to go home. The nurses had to physically restrain him from cutting all the strings to his traction. ::)
Happy days.Cant see it happening nowadays.
Great news about the girl though.Modern medicine can be a wonderful thing. :y
So can Guinness! ;)When I had my 10 weeks in hospital in Belfast in the 70,s we were given a can of guiness each every day.
There were 6 of us in the ward.One bloke (a well known bike racer with many many fractures in his legs)loved guinness the rest of us werent really bothered with the stuff,so he had 6 cans of guinness a day. ;D ;D
He got absolutely sh1tfaced one night and decided it was time for him to go home. The nurses had to physically restrain him from cutting all the strings to his traction. ::)
Happy days.Cant see it happening nowadays.
Great news about the girl though.Modern medicine can be a wonderful thing. :y
So can Guinness! ;)
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hi chris
is amy home from hospital yet :)
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3weeks and 3 days since surgery, and near death(no other way to put it) at Xmas...
Yep, received a message. She is home.
Keeping it low key I suspect. She is anxious, and doesn't like a fuss. But she's home.
Incredible. :)
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:y Great news, and long may her health continue.
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You've just brought another tear to my eye! ::)
You and I are going to raise a big glass of something to Amy at the weekend :y
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:y :y this is totaly amazing we just cant belive shes home
dont know what else to say chris you and your family must be so happy to have her home
:y :y :y :y :y :y :y :y :y :y :y :y :y :y :y :y :y
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Chris i wish the very best to you and your family.....thank god for the generosity of our donors....god bless them ...and you matey :y
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When she was seriously ill, I had the odd "staring out the window" moment.
Since the transplant i've had similar, but with the complete opposite thoughts.
What must it be like for her... Maybe now she's home it will sink in more, and the anxiety will subside. Might take a while though.
Looking forward to Xmas this year. Actually, she owes us two. Double job this time I think. ;)
Thanks all for your interest and kind words. Appreciated. :-*
I always wondered, seriously wondered, if my organs would be of use, to anyone. Not anymore. Tests aside of course. Not sure why I thought that before... Odd. :-\
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great news Chris well done Amy
best whishes me wifey and doggy :y :y
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Thats great news, hope she continues to do well.
My son was diagnosed with CF when he was 15 months old, albeit a very mild case.
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Thats great news, hope she continues to do well.
My son was diagnosed with CF when he was 15 months old, albeit a very mild case.
How is he now? Not suffering too much I hope..?
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This is one of those topics that makes you go "FFS, what am I whinging about, some people have proper problems". All the best to her mate, glad she's home :y
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P.S. Chris, any chance of bringing her on Saturday? ;) ;D
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:y Excellent news. Like you say, it should get easier and easier as the days go on. :y
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Yeah, most times, things could probably be a lot worse... Probably.
And no Aaron. Just No. ;D
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so nice thats she is doing so well, may it continue. all my very best to her, & you of course. a great weight off your minds.
time to enjoy the future. :y
jon.
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Yeah, most times, things could probably be a lot worse... Probably.
And no Aaron. Just No. ;D
Aw c'mon. Be a sport! .. ;D
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Tonight she has mostly been...
...shopping. ;D
of course, what else. :y
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;D Tis a woman's way!
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Good to see she is doing so well she can know go shopping. :y
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Incredible!! Just Incredible!!! Less than a month and she's out shopping!! :o Fantastic!!! Just Fantastic!!! :y :y :y
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Just :y :y :y :y :y :y :y :y :y :y :y :y :y :y :y
8)
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Visited Amy at home yesterday. Bit of a family do. It was suggested that we have Christmas again. Properly this time. With everyone present. We have a man made tree. Santa had been informed, for some time in June, and there will be Turkey, presents and Ham and everything. She owes us. Two Christmases actually.
Lovely as Christmas always is, It just wasn't the same with one missing. ;)
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Save us a pig in blanket ;D
Excellent idea :y :y
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Save us a pig in blanket ;D
Excellent idea :y :y
nope, I'm having yours. :P ;D
I thought so. Any excuse for another Xmas dinner. And the shopping should be a bit less hectic. ;)
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How is Sis doing now? Have the jitters settled down? Is Amy home full time now? Is there a lot of follow up treatment? Is that a lot of nosy questions? :) :)
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;D Yes Doz that's a lot of questions. ;D
She is very well. Very good spirits. Mum is finding it odd Amy is now taller than her. She can now stand straight up right. Where before Amy used to slouch forward so the old lungs sat forward in the chest cavity in a more comfortable position.
There have been three follow up appointments. All is well as it should be. Jitters are still there, due to suppression drugs, but improving. She has the deepest laugh. Haven't heard it for a good long while. :y
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:y :y :y chris it must be great to hear amy laugh have a good xmas dinner have a drink for me :y :y
:D :DHAPPY CHRISTMAS ;D ;D
from the ozzys
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Fantastic news, just great :y :y Really pleased for you all :y :y
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Cheery news! :y
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Thats great news, hope she continues to do well.
My son was diagnosed with CF when he was 15 months old, albeit a very mild case.
How is he now? Not suffering too much I hope..?
Sorry been away for a while, only just seen your post.
No. 1 son now 13 year old, doing very well, no antibiotics or physio, just a course of vitamin supplements, which he will have to take long term.
Best wishes to you sister and hope she continues to do well, but I guess wont be running any marathons just yet.
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Thats great news, hope she continues to do well.
My son was diagnosed with CF when he was 15 months old, albeit a very mild case.
How is he now? Not suffering too much I hope..?
Sorry been away for a while, only just seen your post.
No. 1 son now 13 year old, doing very well, no antibiotics or physio, just a course of vitamin supplements, which he will have to take long term.
Best wishes to you sister and hope she continues to do well, but I guess wont be running any marathons just yet.
wow that's good news. Best of luck for the future with him.
Re Matathons, apparently there us a transplant Olympics at Harefield every year. Nit sure they do a Marathon, but its late in the year so there's time. :)
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I keep checking this topic, it never fails to make me smile. :y
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hi chris hows amy doing now ?
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Very well thankyou guys. She's had her twice weekly check ups knocked down to once a fortnight. Drs are very pleased.
Xmas went well. We had a lovely day. All the family together for once. Although it was alot of work for Mum and Dad.
She's looking to move back to her own Flat in London soon I think, where her future really lies. Bless her. :y
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Excellent news, trouble is everytime I read this thread I shed a tear ;) :y :y
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:y :y :y great news wish amy all the best from the ozzys :y :y :y
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Great to here progress is being maintained Chris, Mrs S and I wish her continued improvement. :y :y :y :y :y :y :y
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Thank you guys, as always.
It's an odd feeling, currently. We're almost at the point where we can carry on, almost normally. But normal doesn't quite do the rather ...miraculous (?) situation justice. Far from it in fact. But that's what we( family, Drs, Nurses, Surgeons, Physio's, Phsychologists, Amy ...everyone) have been working towards.
Nothing would please us all more, than to see Amy live a normal life. In fact, she and Dad did a little tour, of various Hospitals and wards that cared for her so brilliantly in the past. Slight problem is, she's not aloud into those places anymore, due to immune suppression, one of those super bugs would be really bad news. In fact one nearly killed her just before Xmas.
So Dad would phone the ward, he has alll the numbers i believe, while they stood outside the window in the car park. And before long ALL the Drs and Nurses would appear at the window. Much waving, laughing, jumping up and down and crying was had by all. Delighted to see Amy, standing, upright and being... well, Normal. :-\ ;D
Every day that passes without complication, the better her chances, as I understand it. We await a slight set back, such as a cold or flu. This worrys Amy. But Harefield seem confident with all that, they've seen it all before.
So it's all good, so far. :y
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You've just done it again ::) Another tear shed for your joyous family situation :y
As ever, we are thrilled for you all, especially Amy, and look forward to hearing many happy tales :y Perhaps she can even pick up the band again :-\ If it's something she is interested in doing I can have a chat with a friend of mine in the industry... He may know of an up and coming band/performer who is looking for new members :y
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hi chris
this makes me feel more confidant about my own proposed transplant if it happens
please thank amy for restoring my confidence in the system
all the best ozzy
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Glad to hear it's all good news still, Chris :y Now quit making us all emotional! ;)
Though I did just chuckle to myself - I just started seeing a girl called Amy. Don't worry .. it's not your sister! ;D
Anyway - long may her health continue and long may she continue to avoid the man flu :y I'll raise a glass later.. it's as good an excuse as any, I reckon :)
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hi chris
this makes me feel more confidant about my own proposed transplant if it happens
please thank amy for restoring my confidence in the system
all the best ozzy
Tempted to ask but don't want to be nosy, but all the very best with your situation, and from what I have seen, and if your situation is even remotely similar, you'll be in exceptionally good hands. All the best to you too ozzy. :)
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From the dark days just before Xmas, that I know Mr gixer didn't post much about at the time, to the glory of Christmas Day in June, how can so much change in so little time.
Its an incredible story, almost impossible to believe, and full of ups and downs that I know chrisgixer hasn't fully posted about.
Even now, I struggle to believe its actually come out as a 'success story'. Although I would never have told him at the time, I was worried the outcome would have been very, very different.
I'm gibbering now. Must be the several bottles of beer :-[
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Good to hear Amy is continuing to make excellent progress :y
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Amazing post this with excellent out come for a remarkable person and close family always has me sniffing at my key board, So glad everything is going well best wishes the Lovejoys
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From the dark days just before Xmas, that I know Mr gixer didn't post much about at the time, to the glory of Christmas Day in June, how can so much change in so little time.
Its an incredible story, almost impossible to believe, and full of ups and downs that I know chrisgixer hasn't fully posted about.
Even now, I struggle to believe its actually come out as a 'success story'. Although I would never have told him at the time, I was worried the outcome would have been very, very different.
I'm gibbering now. Must be the several bottles of beer :-[
You aren't the only one who had that concern ;) Although I was outwardly singing the prises of modern medicine to them I did have some hidden doubts :-[
But equally, given the circumstances, there was only ever really one option and that was to "give it a go" ;) Thankfully everything has gone well and to plan on the first attempt :y Goes to show that modern medicine is a great science ;)
Now... About the cure for the common cold.... ::)
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Thank you guys, as always.
It's an odd feeling, currently. We're almost at the point where we can carry on, almost normally. But normal doesn't quite do the rather ...miraculous (?) situation justice. Far from it in fact. But that's what we( family, Drs, Nurses, Surgeons, Physio's, Phsychologists, Amy ...everyone) have been working towards.
Nothing would please us all more, than to see Amy live a normal life. In fact, she and Dad did a little tour, of various Hospitals and wards that cared for her so brilliantly in the past. Slight problem is, she's not aloud into those places anymore, due to immune suppression, one of those super bugs would be really bad news. In fact one nearly killed her just before Xmas.
So Dad would phone the ward, he has alll the numbers i believe, while they stood outside the window in the car park. And before long ALL the Drs and Nurses would appear at the window. Much waving, laughing, jumping up and down and crying was had by all. Delighted to see Amy, standing, upright and being... well, Normal. :-\ ;D
Every day that passes without complication, the better her chances, as I understand it. We await a slight set back, such as a cold or flu. This worrys Amy. But Harefield seem confident with all that, they've seen it all before.
So it's all good, so far. :y
So it's all good, so far
That's very welcome news indeed. 8) :y
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Amy felt that her pre op condition was untenable. She had a chat with Parents and Drs after 6months of hell, and decided to go for it. No regrets Amy? "no regrets" she said through her whispered tracky restricted voice.
There was little doubt of the risks, but even more doubt about life with out a transplant. No life at all in fact, and Amy didn't want it. Decision made. Move on.
Typical Amy it has to be said.
One of the most important things to stand out through the whole thing was Amy's spirit. Put a brick wall in the way, tell her something is not possible, can't be done, not aloud... And she'll probably not take much notice.
... Not always a good thing mind you. ;)
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Amy felt that her pre op condition was untenable. She had a chat with Parents and Drs after 6months of hell, and decided to go for it. No regrets Amy? "no regrets" she said through her whispered tracky restricted voice.
There was little doubt of the risks, but even more doubt about life with out a transplant. No life at all in fact, and Amy didn't want it. Decision made. Move on.
Typical Amy it has to be said.
One of the most important things to stand out through the whole thing was Amy's spirit. Put a brick wall in the way, tell her something is not possible, can't be done, not aloud... And she'll probably not take much notice.
... Not always a good thing mind you. ;)
Ah, the gixer family trait. Stubbornness ;D
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Amy felt that her pre op condition was untenable. She had a chat with Parents and Drs after 6months of hell, and decided to go for it. No regrets Amy? "no regrets" she said through her whispered tracky restricted voice.
There was little doubt of the risks, but even more doubt about life with out a transplant. No life at all in fact, and Amy didn't want it. Decision made. Move on.
Typical Amy it has to be said.
One of the most important things to stand out through the whole thing was Amy's spirit. Put a brick wall in the way, tell her something is not possible, can't be done, not aloud... And she'll probably not take much notice.
... Not always a good thing mind you. ;)
Ah, the gixer family trait. Stubbornness ;D
[/quoteyes but in that aspect the right kind of stubbornness i.e sod you im gona survive which she has proved total respect for amy :y :y :y :y
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She's here. After 3 years, on Christmas eve, at the family home. Full of beans, commenting on the decorating updates, and everything else.
She's here. Fit as a fiddle.
Happy Christmas everyone. X X X :y
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Great news Chris. Hope you all have a good one after all this worry. ;) :y
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Yay!!!! :y Send her All our Best Chris. No need to wish the Gixer Family a Happy Christmas!!! :y
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She's here. After 3 years, on Christmas eve, at the family home. Full of beans, commenting on the decorating updates, and everything else.
She's here. Fit as a fiddle.
Happy Christmas everyone. X X X :y
That's fantastic news Chris! :y :y :y :y
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blooy brilliant merry christmas to all
:y :y :y :y :y :y :y :y :y :y :y :y :y :y :y :y :y
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Hahaay, thanks guys. (had you in mind ozzy, being honest. ;) )
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Freakin Brilliant X :y :y :y :y :y :y :y :y :y
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great news indeed. have a good one. :y :y
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Brilliant news ;D ;D ;D ;D ;D :y :y :y :y :y
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Having seen and spoken about some of the darker times I cannot put into words how great it makes me feel.
As SWMBO said to H earlier, all the best to you all and especially Amy. Enjoy the first real Christmas together for quite a while!! :y
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Hi Chris,
So glad for you and Amy and may you have many more fantastic times and Christmases together.
The most important things in life are your immediate family and good friends, rank is but a penny stamp and money is but a tool, you have been though the depths of darkness with your dear sister Amy and I wish for you and your family, that every day is now filled with sunshine.
Good luck and with sincere wishes that you and your sister have many good years and much happiness. :y :y :y :y :y :y
From Rods2 and my family
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Best Christmas pressie ever Chris!! :y
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Hahaay, thanks guys. (had you in mind ozzy, being honest. ;) )
:y :y cheers mate have a good one all of you :y :y
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Brilliant news Chris.
I'm glad everything has turned out well and you can have what in my mind Christmas is all about and that's the ones you love around you :y
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Awesome news,and a proper Xmas story.Hope recovery goes well and is speedy.Just goes to show what the donor system can accomplish.
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Fantastic news :)
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A ray of hope for all those poor souls with life-threatening illnesses, that with the right support, and more importantly, the right donors being available, a "normal" life is possible.
I'm honestly welled up.
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Great news .. all the best to the whole family .. together as you should be :y :y :y :y
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Well reading that lot finally done something which people who know me thought was totally imposible.
Leave me lost for words :)
So i'll just say, make it a day to remember and enjoy every second :) :)
Merry Christmas Chris, Amy and all your family :) :) :)
Steve, Brenda & Paul (aka the gonad family) :) :)
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A ray of hope for all those poor souls with life-threatening illnesses, that with the right support, and more importantly, the right donors being available, a "normal" life is possible.
I'm honestly welled up.
Must admit, I had the same reaction
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God bless you all, Chris. I can't begin to imagine how bad it has been for all of you but I sincerely hope the future is bright. Steve and family.
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:y Nice one , great way to start a new year :y
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Now that's an Xmas present :y
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She's here. After 3 years, on Christmas eve, at the family home. Full of beans, commenting on the decorating updates, and everything else.
She's here. Fit as a fiddle.
Happy Christmas everyone. X X X :y
Glad to hear good news Chris :y
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A ray of hope for all those poor souls with life-threatening illnesses, that with the right support, and more importantly, the right donors being available, a "normal" life is possible.
I'm honestly welled up.
Must admit, I had the same reaction
pair of sops. ;D You haven't seen the thankyou letters too and from the Drs. ;)
All the best everyone, and thank you. :)
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That is fantastic news sir, absolutely over the moon for you, my sons partner suffers the same problem, and its heart wrenching sometimes to see her suffer so, its a cruel old world in some respects...
Best wishes to all concerned..
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Best of luck acope, by nature it will get tougher too no doubt. :'( But there is a light, a bright light, at the end of the tunnel. I hope it works out for you and yours too. :-*
Once again, very best of luck. :)
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Brilliant news CG - all the best from MrsSE and I :y
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Great news Mr Gixer. :y
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Best of luck acope, by nature it will get tougher too no doubt. :'( But there is a light, a bright light, at the end of the tunnel. I hope it works out for you and yours too. :-*
Once again, very best of luck. :)
Many thanks...appreciate your comments.
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Fantastic news Chris :y :y
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As said great news Chris. :y Hoping that the operation offers your sister a new lease of life.
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Ooh my heart jumped up into my throat when I saw this post reappear near the top .. for a minute there I was worried.
Still, it's all good news it seems, which I'm very glad to hear Chris :y Hope you all had a great Christmas!
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Fantastic news, I bet this was the best Christmas you have all had in a very long time :y
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best thing i've heard over the xmas period !!!!!
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That is fantastic news. I know what you and your family are going through. My youngest son has CF.We are lucky with him though as he has it mainly cofined to his stomach although he is now getting more chest infections each year. he is now 24. When it was first diagonsed, with him being nearly 3 years old, we were told in a very straight way that " He is now on the heart lung transplant register and he will have that by the time he is 13. He will only have a life expectancy of 16 yeras and will now need daily physio and numerous medicenes to keep him alive to that age. Any questions?" He has naturaly developed type 1 diabetes, so is a bit of an anomaly at The London Chest hostpital where he has his regular check ups. Apparently, all CF,s develop type 2 diabetes due to the diet they have to have but not type 1. i wish your sister all the best to a speedy recovery from the surgery and a better standard of life.
Keith B
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A belated best wishes and congratulatiions to Amy, and the family Chris, I am so delighted for you all. The New Year must look so much brighter than last year.
Happy New Year.
Chris :y :y :y
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That is fantastic news. I know what you and your family are going through. My youngest son has CF.We are lucky with him though as he has it mainly cofined to his stomach although he is now getting more chest infections each year. he is now 24. When it was first diagonsed, with him being nearly 3 years old, we were told in a very straight way that " He is now on the heart lung transplant register and he will have that by the time he is 13. He will only have a life expectancy of 16 yeras and will now need daily physio and numerous medicenes to keep him alive to that age. Any questions?" He has naturaly developed type 1 diabetes, so is a bit of an anomaly at The London Chest hostpital where he has his regular check ups. Apparently, all CF,s develop type 2 diabetes due to the diet they have to have but not type 1. i wish your sister all the best to a speedy recovery from the surgery and a better standard of life.
Keith B
sounds familiar Kieth. Good news that its mild in his case. Treatment moves on so quickly these days it's probably changed again since Amy left hospital. The War and battle plans against il health being a totally fluid and constantly changing picture.
It's also good the the transplant register is referred to as just that, a register, rather than a queue or a list. Because it most certainly is not the latter. But a constantly changing picture of logistics, back up, availability and severity that can't possibly conform to a queuing system, as its often referred to. A common misconception it seems to us now.
Best of luck Kieth, but rest assured that it seems to us, that luck has an ever decreasing baring on these things. They do seem to have it as sussed as availability will allow.
Regards
Chris
thanks all again for you kind responses. :)
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Great to hear that brilliant news.
best wishes
Michael and Mrs Michael :)
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Thats great news Chris :y