Lung transplant

[skylas]

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

[sassy59]

Good luck to you Skylas. Xxxx

[skylas in reply to sassy59]

Aw thanks so much r u on the waiting list x

[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

[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

[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

[skylas in reply to sassy59]

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

[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.

[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

[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

[Lemon7]

All the best. Good wishes to you.

[skylas in reply to Lemon7]

Aw thanks x r u on the waiting list xxx

[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.

[skylas in reply to Lemon7]

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

[Hidden in reply to skylas]

Good luck think positive x

[skylas in reply to Hidden]

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

[Patsy164]

🍀🤞 xx

[skylas in reply to Patsy164]

R u on the waiting list for a lung transplant xxx

[Patsy164 in reply to skylas]

No just wishing you luck xxx

[skylas in reply to Patsy164]

Aw how nice thanks so much xxx take care xxx

[simplesprout]

Good luck sky x

[skylas in reply to simplesprout]

Aw thanks so much xxx

[Oshgosh]

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

[skylas in reply to Oshgosh]

Aw thanks il let u no xxxx

[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 🤞

[skylas in reply to HungryHufflepuff]

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

[BreatheasyBe]

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

[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

[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.

[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

[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

[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

[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

[Thomac]

Fingers crossed. Where are you being assessed?

[skylas in reply to Thomac]

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

[Thomac in reply to skylas]

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

[skylas in reply to Thomac]

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

[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

[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

[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

[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

[skylas in reply to sibkev]

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

[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

[skylas in reply to sibkev]

What tests n tests ha x

[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

[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

[sibkev in reply to skylas]

i have a few probs but met loads that dont

[Ergendl]

Good luck. Hope the decision goes your way.

[skylas in reply to Ergendl]

Aw thanks so much me to x take care xxx

[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

[Ergendl in reply to skylas]

Good luck xx

[skylas in reply to Ergendl]

Aw thanks so much x hope u r well x

[skylas in reply to Ergendl]

Hi how u doing x

[Ergendl in reply to skylas]

I'm fine. Just getting into the busiest time of the year for musicians like me and better. Will be able to relax from 30th.

[skylas in reply to Ergendl]

Aw hope u have a great Christmas x dont b over doing it x ha xxxx

[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.

[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

[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

[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

[skylas in reply to Tweetie13]

Let me no howl u get on good luck xxx

[Tweetie13 in reply to Tweetie13]

Which centre did your assessment?

[skylas in reply to Tweetie13]

Wythenshawe hospital in England xxx

[Izb1]

Good luck to you Skylas, wishing you well x

[skylas in reply to Izb1]

Aw thanks so much xxx wishing u well to xxxx

[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

[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

[skylas in reply to Izb1]

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

[Izb1 in reply to skylas]

😋😋😋😋

[Ron62]

Hi Skylas

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

Ron

[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

[Ron62 in reply to skylas]

It will be at Freemans, Newcastle.

I am 56

[skylas in reply to Ron62]

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

[Gingerapple]

Hi Skylar,

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

[skylas in reply to Gingerapple]

I have severe emphasema I'm 49 xxx

[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

[skylas in reply to Hacienda]

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

[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

[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

[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

[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

[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

[jackdup]

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

[skylas in reply to jackdup]

Aw thanks so much xxx r u on the list xxx

[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.

[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

[jackdup in reply to skylas]

You too.

[skylas in reply to jackdup]

Xxxxx

[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

[jackdup in reply to skylas]

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

[skylas in reply to jackdup]

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

[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

[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

[Georgina12]

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

[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

[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?

[Georgina12 in reply to 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

[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

[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?

[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

[Caspiana in reply to skylas]

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

[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

[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

[Georgina12 in reply to skylas]

Hi congrats so sorry I've only just seen this any news

[skylas in reply to Georgina12]

Hi no cause of this virus they've put a 30 day postpone on it n every time I get I'll with my breathing n am on more than 15mg steroids a day they do the same cause was in hospital for nearly 2 weeks over Christmas x how r u doin x

[Caspiana]

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

[skylas in reply to Caspiana]

Aw thanks me to il let u no x

[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.

[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