Problems afta lung transplant - British Lung Foun...

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Problems afta lung transplant

skylas
skylas
โ€ข35 Replies

Problems afta lung transplant

35 Replies
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Tweetie13

I'm confused ! Have you had transplant already ??

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skylas
skylas
in reply to Tweetie13

No just my mind working over time n c ing what I'm guna b in for ha x hospital foned n said they just waiting on my wee sample n then I'm on the list they guna ring me fri so hopefully all good x hows u x

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Tweetie13
Tweetie13
in reply to skylas

I've got a vascular test on 9th Dec to see if my groin artery is big enough for the bypass machine.

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Caspiana
Caspiana
in reply to Tweetie13

I hope it all goes well Tweetie13 . Good luck. xx ๐Ÿ˜€

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Tweetie13
Tweetie13
in reply to Caspiana

Thank you Caspiana x

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skylas
skylas
in reply to Tweetie13

Why u having that done x

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Tweetie13
Tweetie13
in reply to skylas

When I had my angiogram done during 3 day assessment they couldn't initially find my artery in my groin. Apparently they thought it was too deep and small so proceeded via wrist. Now they need to check further.

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skylas
skylas
in reply to Tweetie13

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

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Tweetie13
Tweetie13
in reply to skylas

Hi Skylas that's wonderful news !!

My test will be on Monday I'll find out sometime after that maybe Friday after MTD meeting xx

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skylas
skylas
in reply to Tweetie13

Aw great good luck let me no how u get on xxxx

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HungryHufflepuff

Hi Skylas have you seen Caspianaโ€™s recent post? She had a lung transplant 4 months ago and keeps us updated with her progress. I guess everyone will have different experiences post transplant, depending on all kinds of things such as your state of health and fitness beforehand, your reaction to the medications, your recovery from major surgery and many other factors.

Hopefully your samples come back ok and you get on the list soon ๐Ÿคž

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skylas

Aw yea I've bn reading it's much as I can x n like u say everyone's different x how r u doing x

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skylas

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

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HungryHufflepuff

Hi skylas I'm not on the list for a transplant so I can't answer your questions but I see Caspiana has given you lots of helpful advice. It's really good to know you're on the list now. I hope you get your call soon ๐Ÿคž Thinking of you.

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skylas

Aw thanks so much xxxx hope u r well xxx

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Caspiana

Hello skylas . ๐Ÿ‘‹

Honestly, there is very little point in stressing over what "may " happen. The important thing for you now is to stay as physically fit as possible. The stronger you go in , the better your recovery. The wait can be some time, so please know that just because you are listed, it doesn't mean you can just sit back and wait. Keep up your pulmonary rehab, move as much as possible and do things to keep your mind in a positive place. You've got this my friend! ๐Ÿ˜Šxx

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skylas
skylas
in reply to Caspiana

Aw thanks so much your always so positive x yea I still work one day a week but really struggling to do it n I've got n exercise bike at home x how r u doing x

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Caspiana
Caspiana
in reply to skylas

I've been having good days recently. Thank you for asking. Keep up your biking exercises. You need to be fit as possible. xx ๐Ÿ˜Š

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skylas
skylas
in reply to Caspiana

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

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Caspiana
Caspiana
in reply to skylas

Many congratulations!! ๐Ÿ˜€ I waited 24 months. But everyone is different. I had zero dry runs. When you get to hospital they weigh you, take your sats, send you for x-rays, CT scans and Echocardiogram. Then you have a shower. The surgeon will update you on the status of the donated lungs and you will have to sign paperwork like a waiver. In Japan an independent party will come in to confirm that you really want to go through with the operation. Then you wait. When the lungs are confirmed to be viable you will be taken to surgery, you kiss your family, then they insert all sorts of lines. Then you sleep. And know nothing till you wake up. xx ๐Ÿ˜Š

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skylas
skylas
in reply to Caspiana

So r u still awake when theyvinsetvall the lines I was hoping n I'm guna ask can they do all that while I'm asleep x how u feeling n doing x

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Caspiana
Caspiana
in reply to skylas

They want you awake for some of it. It's really not so bad considering what you will go through afterwards. Don't worry too much. xx

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skylas
skylas
in reply to Caspiana

What stuff do they want u awake for x I love talking to u cause u no everything x n i want to no everything x not to worry just to no weather it will happen to me or not i just wud like to no x n u say considering what I will go through afterwards x like what please give me a list if u dont mind x aw thanks so much Caspian x love cheryl x

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Caspiana
Caspiana
in reply to skylas

Cheryl, listen please.

I am telling you my experience, but I don't know everything. They need to put a line in your arm. That is not bad at all considering you are going to have a major operation that is far, far more painful and serious than a prick and the discomfort of a needle. You will also have tubes in your chest to drain liquid which you will have for a while even after you wake up and in your neck. So you must, just be a bit brave and more than that you must believe you are strong enough to do this because you are. Do not worry so much about this, it is important now to stay focused on getting through this waiting time and coming out the other end as strong as you can. The stronger your mind and body, the better your outcome. You can do this. xx ๐Ÿ˜Š

By the way, there is a lung transplant group on Facebook. It is American based but loads of information. I can send you the link if you want. Only thing is it can be grim reading at times. But it is important to remember that everyone is different and what you read there is not necessarily going to happen to you or me.

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skylas
skylas
in reply to Caspiana

Aw yea send me the link x n I no I fink I'm not brave but when it comes to it I always am just dint fancy the needle in my neck one n the epidural one b4 they put u to sleep even though I've ad both done b4 I no I will have all tubes n lines n needles coming out of me after it for some reason I'm ok with that cause they will already b there when I wake up n plus theres nowt I can do bout it just do as I'm told to get out of there n bck home I'm ready for the fight n I will give it my all I've been waiting for this chance for 7 years so I no I'm lucky to get the chance a lot dont aw thanks for been there for me xxx how u doing now n how u feeling do u get out n about a lot now x

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Caspiana
Caspiana
in reply to skylas

Here's the link. It's a closed group so you must send a message to explain you are on the transplant list in the U.K. and then they will add you. Then please write a post about yourself and people will welcome you. โค๏ธAlso, they don't allow abbreviated words. So no text speak. They are very strict about that. ๐Ÿ˜’๐Ÿ˜ฃ

facebook.com/groups/LungTra...

I am doing okay but my kidney function is suffering. However, it went from 42% two weeks ago, to my last visit 48% so my doctor thinks things are looking up. I walk everyday. My aim is at least 5000 steps but in a good day I do 8000. It really helps me feel good. ๐Ÿ˜๐Ÿ˜€

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skylas
skylas
in reply to Caspiana

Aw thanks for link I'm really bad dislexic so will tell them aw hope your kidneys keep I'mproving what rather symptoms u get from it not doing well x n 5000 n 8000 wow that's great xxxx hope trying to do well which I no u do xxx take care xx cheryl xxx

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Caspiana
Caspiana
in reply to skylas

I hope it helps . See you there. xx ๐Ÿ˜ƒ

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skylas
skylas
in reply to Caspiana

Ha xxxx aw thanks so much xxx

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sibkev

i ha d little choise have it live dont die simples no stress nt half

1 like
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skylas
skylas
in reply to sibkev

Aw thanks x so it was no choice live or die x same ere x was just asking what problems u have now I no I mite not get them x was just asking x if u dont mind saying xxx

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skylas
skylas
in reply to sibkev

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 n what do they do to u when u get to hospital xx hope u r well xxx

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dickinson1954

Don't worry what may happen as it may never happen. Focus on being fit for the op and then your recovery. x Anita

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skylas

Aw I no thanks anita x was just asking what problems people r having x wud live to no not to put me off or anything x ha just wud like to no all the different things x I no loads already ha x

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skylas

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

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