Lung transplant: Waiting for an answer... - British Lung Foun...

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Lung transplant

skylas
skylas
103 Replies

Waiting for an answer of yes or no to go on lung transplant list

103 Replies
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sassy59

Good luck to you Skylas. Xxxx

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skylas
skylas
in reply to sassy59

Aw thanks so much r u on the waiting list x

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sassy59
sassy59
in reply to skylas

No, I’m carer for my husband Pete who has COPD. He’s not on the transplant list though and doesn’t use oxygen. Xxx

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skylas
skylas
in reply to sassy59

No I'm not on oxygen either but when I move I'm really gasping for air n my heart rates threw the roof x it must b tuff on u caring for him x u keep well xxx

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sassy59
sassy59
in reply to skylas

You take care Skylas. I don’t mind caring for Pete. We’ve been married for 46 years and he was diagnosed with sarcoidosis in 1991 and COPD in 2010. Things aren’t too bad so let’s hope it stays that way. Xxxx

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skylas
skylas
in reply to sassy59

Aw yea I hope it does x take care n thanks x

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Spacecat1
Spacecat1
in reply to skylas

Good luck.hoping after rehab and keeping up exercise and pass the 6 minute walk they may put on the list for coils or long transplant will have to see. As long as I can stay fit keeping fingers crossed.

Good luck.

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skylas
skylas
in reply to Spacecat1

Aw hope all goes well for u x I ad valves in one lung 3 years ago other lung was to damaged it lasted bout 6 months felt a bit better x it calapses third of your lung to help the rest inflate better to breath but none grew bck so only option now is a lung transplant if I've passed all the test will no by end of this month x aw take care xxx

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skylas
skylas
in reply to Spacecat1

Hi just to let u no I'm now on the waiting list for a lung transplant x

any news for u on the values or transplant xx hope u r doing well xxx

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Lemon7

All the best. Good wishes to you.

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skylas
skylas
in reply to Lemon7

Aw thanks x r u on the waiting list xxx

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Lemon7
Lemon7
in reply to skylas

No, I am fortunate enough to be diagnosed mild copd. However, I do appreciate the different illnesses and levels of severity on this forum. I wish all the very best to you.

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skylas
skylas
in reply to Lemon7

Aw thanks so much x hope u keep as well as u can x

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Emily61
Emily61
in reply to skylas

Good luck think positive x

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skylas
skylas
in reply to Emily61

Aw thanks so much x I'm trying ha x take care xxx

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Patsy164

🍀🤞 xx

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skylas
skylas
in reply to Patsy164

R u on the waiting list for a lung transplant xxx

1 like
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Patsy164
Patsy164
in reply to skylas

No just wishing you luck xxx

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skylas
skylas
in reply to Patsy164

Aw how nice thanks so much xxx take care xxx

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simplesprout

Good luck sky x

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skylas
skylas
in reply to simplesprout

Aw thanks so much xxx

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Oshgosh

The waiting is the worst. Hope all goes well for you

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skylas
skylas
in reply to Oshgosh

Aw thanks il let u no xxxx

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HungryHufflepuff

Did you get your bone density test? I know you said you were waiting for that but I can’t remember when it was. I hope you hear soon about whether or not you can go on the list. I’m not on the waiting list but wish you all the best 🤞

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skylas

Got bone scan on 25th of this mo th then they said they will ring me end of month ish to c if it's a yes or no x praying it's a yes x il soon if d out x aw thanks so much for asking x u ok x

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BreatheasyBe

Heh Skylas - have you been assessed for oxygen? I’m finding it really helps me.

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skylas
skylas
in reply to BreatheasyBe

Yes they say I need it if I move but I dont move much cause my heart rate goes threw the roof so there leaving it at the minute to c the out come of the tests x

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BreatheasyBe
BreatheasyBe
in reply to skylas

My heart rate increased quite significantly without the oxy. I find it’s not as high now doing the same tasks if I’m wearing the oxygen. I think it’s because the heart’s not pumping so hard to get the oxygen it was once deprived off.

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skylas
skylas
in reply to BreatheasyBe

Aw no way they said cause I dont move much n it's ok if I dont move they wunt give it me cause I'd b taking it on off on off x il ask then nex time x aw thanks for info xxx take care x

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skylas
skylas
in reply to BreatheasyBe

Hi just to let u no I'm now on the waiting list for a lung transplant x have u ad one did u say x n yea now there saying I need oxygen so hopefully will feel better when I get it x hope u r doing well xx

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BreatheasyBe
BreatheasyBe
in reply to skylas

Hi Skylas that’s great news although bitter sweet. I had my pulmonary rehab assessment this morning before going on a course. In January. The sessions will last for 6 weeks twice a week. I’m obviously not in tune with how to be in control of my breathing as I get really more breathless once I’ve stopped doing any activity. On the plus side at least the team will make me more aware of my capabilities and limitations. Next week I have an app for echocardiogram and the week after lung function test. Good luck with the oxygen I have found it eases things a little. I now carry my small cylinder in a new bag I treated myself too as the cylinders come with a bag but not really useful to store half a dozen other bits and bobs you need. Such as purse, phone, keys etc I’m going through pre transplant assessment and know I’m way to well to be going on the list- I think it’s incase I get a sudden deterioration of my health as I suffered a prolonged bout of haemoptysis at the start of the summer and was hospitalised for 10 days. The haemoptysis was probably the result of post bronchoscope I had three completed over a couple of months to try and remove a nodule. Third attempt removed the nodule Which turned out to be a mucus plug but my wee lungs didn’t react will to it. Keep in touch Bernie x

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skylas
skylas
in reply to BreatheasyBe

Aw u been in the wars ant u if u were in hospital for ten days x yea I been pul rehab loads of times the breathing like whistling doesnt help me n I've got n exercise bike at home that I try n go on x like u say I'm hoping the oxygen will help a bit x let me no the out come of the pre transplant assessment x take care love cheryl x

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Thomac

Fingers crossed. Where are you being assessed?

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skylas
skylas
in reply to Thomac

I've bn accesment at wythenshawe xxx where r u xxx

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Thomac
Thomac
in reply to skylas

My husband has just been listed at the Freeman in Newcastle. He has sarcoidosis.

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skylas
skylas
in reply to Thomac

Aw great hope he gets the call soon x n take care of u xxx cheryl xxx

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skylas
skylas
in reply to Thomac

Hi just to let u no I'm now on the waiting list for a lung transplant x hows your husband doing any news yet x n how r u doing xxx

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Thomac
Thomac
in reply to skylas

That’s great news. No call yet Chris is doing well just trying to stay clear of winter bugs. Fingers crossed you don’t need to wait too long xx

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skylas
skylas
in reply to Thomac

Aw that good bout chris yea try stay as healthy as he can easy saidcthan done lol x they said cause I'm 5 foot 1 n of small frame they not the easiest to come by so got a feeling its guna b a wait but u never no x take care u as well x cheryl x

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sibkev

yes yes oh my god yes i had mine 3 and half years ago best thing i did its a fight but id do it all again

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skylas
skylas
in reply to sibkev

Aw wide u x why u say it's a fight x

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sibkev
sibkev
in reply to skylas

good days bad days but they are all filled with hope the way i looked at it was live or die i chose live there is a lot going on in the first few weeks tests test test that is the fight to get out the other side and get on with life

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skylas
skylas
in reply to sibkev

What tests n tests ha x

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sibkev
sibkev
in reply to skylas

xrays ct scans oxygen blood tests many blood tests to chq meds lvls every thing you can think of then some

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skylas
skylas
in reply to sibkev

Ha I hate needles as well but if it means I can breath it's worth it x do u have a good life now afta it x

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sibkev
sibkev
in reply to skylas

i have a few probs but met loads that dont

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Ergendl

Good luck. Hope the decision goes your way.

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skylas
skylas
in reply to Ergendl

Aw thanks so much me to x take care xxx

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skylas
skylas
in reply to Ergendl

Hi just to let u no I'm now on the waiting list for a lung transplant x have u ad one xxx

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Ergendl
Ergendl
in reply to skylas

Good luck xx

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skylas
skylas
in reply to Ergendl

Aw thanks so much x hope u r well x

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Tweetie13

Hi Skylas, I presume you've had 3 day assessment and now awaiting MDT meeting to take place to make the list decision. Fingers crossed for you.

I've done that bit. The MDT meeting decided the wanted me to have a further vascular test done before listing, I'm now awaiting an appointment for that.

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Ron62
Ron62
in reply to Tweetie13

Hi, hope it all goes well. I was under review for over a year, but I have recently been put on the list. Keep positive

Ron

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skylas
skylas
in reply to Ron62

Hi just to let u no I'm now on the waiting list for a lung transplant x any news of yours yet xx hope u r doing well xxx

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skylas
skylas
in reply to Tweetie13

Aw let me no how that goes x n what they say x just got to have bone scan cause there weren't enuf staff I've ad all the other tests got that on 25th then will no if it's a yes or no for l7ng transplant list end of month xxxx take care xxx

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skylas
skylas
in reply to Tweetie13

Let me no howl u get on good luck xxx

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Tweetie13
Tweetie13
in reply to Tweetie13

Which centre did your assessment?

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skylas
skylas
in reply to Tweetie13

Wythenshawe hospital in England xxx

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Izb1

Good luck to you Skylas, wishing you well x

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skylas
skylas
in reply to Izb1

Aw thanks so much xxx wishing u well to xxxx

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skylas
skylas
in reply to Izb1

Hi just to let u no I'm now on the waiting list for a lung transplant x did u say u have ad one x hope u r doing well xxx

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Izb1
Izb1
in reply to skylas

Hi there skylas, no lung transplant, not needed. I have mild bronchiectasis and rheumatoid. I am recovering from rotator cuff surgery, torn my tendon off after a fall. I do wish you all the best and hope you dont have to wait too long x

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skylas
skylas
in reply to Izb1

Aw thanks so much n hope u get a speedy recovery from your surgery x

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Izb1
Izb1
in reply to skylas

😋😋😋😋

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Ron62

Hi Skylas

I hope all goes well, I have recently been added to the transplant list after 18 months of reviews

Ron

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skylas
skylas
in reply to Ron62

Aw that's great news what hospital r u at I'm at wythenshawe xx hope u get the call soon x how old r u x I'm 49 xxx

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Ron62
Ron62
in reply to skylas

It will be at Freemans, Newcastle.

I am 56

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skylas
skylas
in reply to Ron62

Aw good luck hope u get the call soon let me no x take care x

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Gingerapple

Hi Skylar,

Why are you on a lung transplant list, if I may ask?💐

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skylas
skylas
in reply to Gingerapple

I have severe emphasema I'm 49 xxx

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Hacienda
Hacienda
in reply to skylas

My very Best wishes for you Hun, Your young and strong to get through a Transplant . Keep us all updated, I see quite a few here are on the List, Best of Luck to you All. Lots of Love. C. XXXX

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skylas
skylas
in reply to Hacienda

Aw thanks so much x I hope so x u take care x il let u no xxxx

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skylas
skylas
in reply to Hacienda

Hi just to let u no I'm now on the waiting list for a lung transplant x did u say u have ad one xxx hope u r doing well xxx

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Hacienda
Hacienda
in reply to skylas

Congratulations Hun, hope your not waiting Long. No, I was on the List for 3 years without 1 call, because my match had to be 100% due to Having very Little antibodies. As I am getting older( almost 68) and I knew of all the implications when I signed, We as a Family along with my Consultant Decided that the Stress of waiting for the phone call 24/7 was making me to stressful. So I came off the list this March. I do know lots of friends who had their Transplants whilst I was waiting. That is just me and I would encourage anyone like yourself to Go on That List and Look forward to The "Gift" that comes to you. The very Best for you, Exercise and do everything your Transplant Doctor tells you. At QE Birmingham, Mine was Dr. Thomson. Stay well till you get there Hun. Love to You & Your Family. xxxxx

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skylas
skylas
in reply to Hacienda

Why did u come off it what do u mean by to stressful to stay on the list x aw thanks for your support and hope u can keep as well as u can x love to u n your family to xxx

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skylas
skylas
in reply to Gingerapple

Hi just to let u no I'm now on the waiting list for a lung transplant x did u say u r on the list xxx hope u r doing well xxx

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skylas
skylas
in reply to Gingerapple

Hi just to let u no I'm now on the waiting list for a lung transplant x r u on the list x hope u r doing well xxx

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jackdup

Best of luck, I pray you will get on the list, and get your call reasonably quickly

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skylas
skylas
in reply to jackdup

Aw thanks so much xxx r u on the list xxx

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jackdup
jackdup
in reply to skylas

No, and hope I don’t progress to the point of needing a transplant, but it is nice to know that option is available if needed. We just need more people to be organ donors.

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skylas
skylas
in reply to jackdup

Your so rite not a lot want to b doors but wud accept a donor if needed n to b fair a lot r to knackered to b used in transplant x so c what happens x aw thanks x take care n keep well xxx

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jackdup
jackdup
in reply to skylas

You too.

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skylas
skylas
in reply to jackdup

Xxxxx

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skylas
skylas
in reply to jackdup

Hi just to let u no I'm now on the waiting list for a lung transplant x hope u r doing well xxx

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jackdup
jackdup
in reply to skylas

That is great news, I pray you get a transplant soon. Take care and good luck.

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skylas
skylas
in reply to jackdup

Aw thanks so much x u take care to x cheryl x

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Georgina12

I hope you get it it totally changed my quality of life I’m also in 40’s 43 next month to be exact x

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skylas
skylas
in reply to Georgina12

Aw wow aw dod it I just hope I get a yes cause got a few other issues as well x wud u do it again n is it at a lot to go threw x how long was u on hospital n how many tests n tablets do u have now x how long ago did u have it done xxx

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Georgina12

What hospital did you have your assessment & when did they say they will give you an answer?

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skylas
skylas
in reply to Georgina12

I'm at wythenshawe got a bone scan on 25th then they said by end of month I shud no if it's a yes or no x

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Georgina12
Georgina12
in reply to skylas

Ok don’t know it is it Transplant hospital?

I had my surgery nearly 5 months ago in harefield hospital and was home around 2 1/2 weeks after

What’s your emphysema from as in reason so bad?

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Georgina12

Hope you don’t mind me asking it’s just your young to have it really bad

What prognosis have they given you

I have emphysema because of Alfa1 gene

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skylas
skylas
in reply to Georgina12

Mines threw smoking 20 cigs a day from 15 n working as a cleaner all my life x yea wythenshawe is a transplant hospital x il let u no how I get on when they tell me x r u glad u ad it done what problems do u have to cope with now n how many tablets n tests do u have x

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Georgina12
Georgina12
in reply to skylas

If you don’t mind me asking what’s your stats fv1 etc

What % of your lungs are still working?

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skylas
skylas
in reply to Georgina12

I fink I'm 17% lungs working yea still struggle in really bad to work I do one day a week cleaning a house but fink I'm guna have to fuck it off soon x

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Caspiana
Caspiana
in reply to skylas

I hope you meant you were going to chuck it or something other than F%£# it off. xx 😊

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skylas
skylas
in reply to Caspiana

Ha yea chuck in it I ment lol x my hubby says I swear to much ha x hows u doing x

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skylas
skylas
in reply to Georgina12

Hi just to let u no I'm now on the waiting list for a lung transplant x how long did u wait n did u have any dry runs x and what do they do to u when u get to hospital xxx hope u r doing well xxx

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Caspiana

I am so excited to hear the outcome skylas . I hope it will honour way! xx 👋😁

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skylas
skylas
in reply to Caspiana

Aw thanks me to il let u no x

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Spacecat1

Not yet. Just waiting for an appointment to see consultant to see if I'm fit enough to be put forward for either procedure. Hope you are ok. And lungs not playing up with todays miserable weather.

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skylas
skylas
in reply to Spacecat1

Let me no what the consultant says when u go hopefully u b fit enuf for one of them I fink they try the valves first anyway then last resort transplant x the cold weather doesnt bothervmy lungs u wud fink it wud but I must b different ha x take care x cheryl x

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