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Transplant assesment results

soulboy118 profile image
68 Replies

Great news from MDT meeting this morning , transplant coordinator phoned me earlier with the news they dont concider im ready for a transplant at the moment ,they have a numbers scale from 1 to 12 ( 1 is i should have a part in walking dead and 12 is running the london marathon) and they have said although i should be a 3 on that scale apparently im a 6 ,they dont understand it either but what lung capacity i have left is working very well , they have me in a watch and wait group, they will see me in 3 months they have said, phew, the relief is palpable i must admit i was scared to death its not after all you make a decision were you could be dead within 12mths is it , thanks to everyone for their good wishes and lets all try and breath easy

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soulboy118 profile image
soulboy118
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68 Replies
sassy59 profile image
sassy59

Here’s to good lung news and see how things go. Cheers! Xxxx 🤞🏼👍

soulboy118 profile image
soulboy118 in reply to sassy59

Thanks sassy59 , im breaking out that special bottle of poundland burgundy , its a classic feb 2019 vintage fermented in old bulls eye brown ale bottles 😃

sassy59 profile image
sassy59 in reply to soulboy118

I’ll raise a G&T to you soulboy. Xx😀

soulboy118 profile image
soulboy118 in reply to sassy59

Pink gin i hope , try one with ginger ale and a slice of orange , im not a gin drinker but i did like that

sassy59 profile image
sassy59 in reply to soulboy118

Nope, not a pink gin fan. I like gin and elderflower tonic usually. Xxxx

BrianTaylor profile image
BrianTaylor in reply to sassy59

Can I just butt in here and say noooo! Pink gin needs to be drunk with tonic, loads of ice, slice of lemon, slice of lime and some slices of strawberry! 😉😛

Personally, my favourite short (not that I drink it often) is Southern Comfort with plenty of ice and some lemonade. 😎

sassy59 profile image
sassy59 in reply to BrianTaylor

You enjoy your occasional Southern Comfort Brian, I’ll stick to my normal gin with tonic and lots of ice.

I used to like Southern Comfort until I got drunk on it once many years ago. Xxx 🙄🤪🥴🥰

BrianTaylor profile image
BrianTaylor in reply to sassy59

That sounds like a story best saved for another day Carole 🤣🤣😘 xx

sassy59 profile image
sassy59 in reply to BrianTaylor

Deffo! Xx 🤪🤣😂

soulboy118 profile image
soulboy118 in reply to sassy59

The old " mothers ruin" is very popular these days , gin bars are opening up everywhere

sassy59 profile image
sassy59 in reply to soulboy118

And I am one old mother, well and truly ruined!!! Lol xxx 🤣😂🤣😂

soulboy118 profile image
soulboy118 in reply to sassy59

🤣🤣

BrianTaylor profile image
BrianTaylor in reply to sassy59

What a way to go though. Can I join your club? 😂😂 xx

sassy59 profile image
sassy59 in reply to BrianTaylor

You’re very welcome to join Brian. Xx 🤣😂

BrianTaylor profile image
BrianTaylor in reply to sassy59

🤣🤣 xx

BrianTaylor profile image
BrianTaylor in reply to soulboy118

We’ve just had one open up here. We’ve not been in there yet but hopefully we will at some point. Ive seen the pics on Facebook - never seen so many different gins! 😳

soulboy118 profile image
soulboy118 in reply to BrianTaylor

I went to a gin festival in 2017 in liverpool cathedral, they held it in the catacombs, they had 300 gins there

That must be almost the best news anyone could have? I'm really chuffed for you! 👌😊

soulboy118 profile image
soulboy118 in reply to

It is , for now anyway ,

hypercat54 profile image
hypercat54

Wow great news. I am so pleased for you. x

soulboy118 profile image
soulboy118 in reply to hypercat54

Yes it certainly is

Skatergirl1 profile image
Skatergirl1

Great news soulboy, I am so pleased for you. Now I am off to buy some tennalady, because everytime I read one of your posts I wet myself with laughter....love your humour xx

soulboy118 profile image
soulboy118

Thank god i had some tenna for men ( they are a very manly blue colour i believe rather fetching if i say so myself ) i wish i could push the boat out 1974 style tonight but alas this is 2019 and a 61yr old doesnt quite go with todays styles and disco doesnt rule anymore

skischool profile image
skischool

I have to say i am not particularly surprised given the things that you stated you were still capable of doing and also given your lack of need for oxygen and relatively high O2 saturations but none the less pleased for you that you don't have to make that very difficult decision in your life,at least at this moment in time.though my thoughts go out to those people that do need to make that decision in the very near future.

Best wishes and enjoy that celebratory drink.

Ski's and Scruff's

cofdrop-UK profile image
cofdrop-UK

Good news - brilliant - pleased for you.

Cx

NuttyNan9 profile image
NuttyNan9

Happy for your good news and also on another good day 😁 hope it continues to be good 😊 Gloria xx

SquirrelsHolt profile image
SquirrelsHolt

Wonderful news soulboy118 ! Really,really happy for you!!!😀

Gingerapple profile image
Gingerapple

Great to hear this soulboy118🤗I shall be toasting you tonight🍾🥂(I won't add too many emojis😄) Have a great weekend!😊🎈

soulboy118 profile image
soulboy118

Going for a meal to celebrate tomorrow 🍾🍸🥳🥃🥃🥃and hopefully no 🚓🚔 🤤

Good news soulboy. U take it easy now, sit back and have a beer or 2. Best wishes as always Mx

HungryHufflepuff profile image
HungryHufflepuff

That is good news indeed 😊 I’m very happy for you. I’ll raise a glass of orange juice to you 🍊🥂

les4560 profile image
les4560

have a good evening!

soulboy118 profile image
soulboy118

Cheers les i did m8

Rachelmcc80 profile image
Rachelmcc80

I’m pleased you had the news you wanted to hear 😊 good luck for the future xxx

soulboy118 profile image
soulboy118 in reply to Rachelmcc80

Thanks rachael , I'd kind of guessed the outcome but it was still a big relief, i have a good weekend planned ( but we all know what can happen to plans) ,hope your ok ,have a good weekend yourself x

Hacienda profile image
Hacienda

Good News for you, I agree with Ski's here, as I did ponder that your not on 02 and your sat readings are Good, So, yes, Rejoice that you Don't now need a Transplant, but Exercise and Stay well and Positive. Best of Luck Soulboy. xxx

soulboy118 profile image
soulboy118

Thanks hacienda, my specialist seemed somewhat puzzled by my lung function results and my o2 stats ,at rest they are between 95 and 98% but as soon as i get active they drop like a bomb to between 91 and 94 ( when im not unwell that is) luckily ive never needed oxygen therapy and never spent more than a day in hospitsl through infection or exasabation, i know im lucky but i have as we all have seen a slow deterioration of my health but what are we gonna do , my old nan had a saying about things you cant change ( like it or lump it ) as you can guess she was a no nonsense type of woman , i have the bigfest smile on my face thinking about her,anyway have a lovely weekend and as always breath easy 😃

Hacienda profile image
Hacienda in reply to soulboy118

Good Morning To You SB, Your Nan was a Good Wise Lady. My Sats at Present at Rest are 89/92 on walking drop to 79/82, as soon as I sit and Breathe on 02 they come back up, so you can see the Difference we Have. As you know I was on the Transplant List for 3 years, I decided the "waiting" was too stressful. Not having any sort of Life. Sods law that after 9 months with my Blingy valves they decided to stop working, so Now waiting for Consultant to come back to me with results of CT scan and hopefully to replace them( she's on Holiday this week). Oh Well we can't win them All can we, Just have to make the Best of a Bad job, as your nan would have said. Have a Great Weekend. Hugs. Carolina xxxxx

skischool profile image
skischool in reply to Hacienda

Well my Carino,this reminds me of the old monty python sketch,79-82 on exertion?Luxury! when i get to end of my garden path it is more like 72 and i only have a modest 3 bed semi with a tiny garden LOL and then i have to do LVRS with a rusty spade for any improvement.Love you to bits though..................Cheeky Ski's y su gata :) xx

Hacienda profile image
Hacienda in reply to skischool

Buenas Dia Carino Mio, I wish I could say Luxury, I will when the Sats go up on Exertion, 90/92 I would be very happy. My garden is Huge, my Bungalow is Small, I still lose my Breathe walking to Kitchen, (very small Steps). I don't walk around the garden . I Pot Plant Sat on my Butt, around the patio table, I sit and watch Hubby mow the lawn, But I so get a Lot of Pleasure from My garden. Trust you are coping and maybe your Bling is working a Little better ? Love you Also, Te Queiro. Besos xxxxxx

skischool profile image
skischool in reply to Hacienda

No it's still rubbish and we both now need a refund,maybe we should complain to OFLUNG the new dept set up by the govt to regulate duff bling suppliers,apart from a pain in my side which is probably due to too much gardening or a failing pancreas i am fine my love.

Besos.....Ski's xx

Izb1 profile image
Izb1

Great news soulboy, long may it continue x

soulboy118 profile image
soulboy118

Hoping so lzb1

syntax profile image
syntax

Congrat's Soulboy enjoy your drink !!

Must admit when l found out the success rate of transplants in this day and

age,l was more than a little disappointed.It has for a long while now been my

least choice of treatments.

It is a great pity really,as my lungs are rather than leaking from one place lol!

have holes (so to speak ) everywhere.This was not good news,but keep looking for

other ways.I think they now have something in America which can seal them.

Yet,l cannot work out what is to seal ??? And if cutting off the Alveoli will decrease

the damage of the Lungs,why this is not being done.

If you know,please explain what l am getting wrong.As l have also been told

that only FOUR heart plants a year are being performed in England ???

Once again Congrats : )

simplesprout profile image
simplesprout in reply to syntax

I was at the transplant unit 2 weeks ago and met a great guy who has been there for 7 months waiting for a heart. He walks for miles each day although he has a small pack keeping him alive. But its all down to organ availability and suitability, but hes not allowed to leave the hospital. Still kept his great sense of humour.

soulboy118 profile image
soulboy118 in reply to simplesprout

We need our sense of humor

Great news!

Artsstar profile image
Artsstar

Wonderful wonderful news - enjoy the weekend

Shirleyj profile image
Shirleyj

Well done you x

ScouseTaffy profile image
ScouseTaffy

Great news! Can a 3 who is a 6 dust off that shell suit? Keep on doing what you're doing .... as the song says

Margaret_craft profile image
Margaret_craft

Great news. Your obviously doing really well, keep it up and you will be doing the London marathon. Very pleased for you. 😁🍷 xx

soulboy118 profile image
soulboy118

I wish but i think getting up the stairs is a marathon for me , at times i look like roger bannister after he did his 4 min mile , apart from my lungs i have no other health issues, kidneys liver heart no arthritis so apart from my air bags id be good to go ,oh well keep on keeping on as they say

Caspiana profile image
Caspiana

Good to hear! Hang on to your native lungs as long as possible! xx 🌞🍀

soulboy118 profile image
soulboy118 in reply to Caspiana

I intend to , im doing everything i possibly can , im eating 🍌🍍🍏🥭🍅🍓🥕🥦🌶🌽 as healthy as i can and exercising as much as possible ,

casey16gatsby profile image
casey16gatsby

I fully understand --I'm pretty much in the same situation -- and I feel your relief!!

All the Best. Keep active -- it is very important!

JCL

soulboy118 profile image
soulboy118 in reply to casey16gatsby

I know , im at my peak now ,we can after all only do so much

casey16gatsby profile image
casey16gatsby in reply to soulboy118

Absolutely -- totally agree.

All the Best,

JCL

Ian1369 profile image
Ian1369

Great news that your not ill enough to go on the transplant list. Given your o2 stats at rest are very high and even on movement hardly drop at all you are lucky. Compared to mine at rest 90-82, stand up into 80’s, start moving drops to between 55 and 65 and that’s on 8 litres on o2. I am on the transplant list but don’t consider myself as looking for a part in the walking dead yet. 15 months on transplant last and things are getting harder but still got a lot of fight left in me yet. Roll on my next 6 monthly torture test aka lung function test lol if I have not had that dreaded wonderful to phone call.

soulboy118 profile image
soulboy118 in reply to Ian1369

I hope you get your phone call even though i know its dreaded , hope you keep your determination ,best of luck ian

simplesprout profile image
simplesprout in reply to Ian1369

Best of luck ian and hope that phone call comes very soon.

2pray4us profile image
2pray4us

that is great news!!! its wonderful when you don't need things like that, but its terrible when you do need it and cant get it. Thats me in my case, stage 4 copd. This is why I cant depend on man in my situation. I look towards the hills from which cometh my help. I look to God for all I need. Its called faith. I am truly happy for you.

soulboy118 profile image
soulboy118

Lets hope your prayers are answered

12345pink profile image
12345pink

That’s good news for you.

soulboy118 profile image
soulboy118 in reply to 12345pink

It is thanks

Eian59 profile image
Eian59

I am glad you got the news you wanted, I hope you can stay active for a long time.

You never know someone might invent new that will help us. And the government start funding the NHS the way they should for Joe public. We can't all go private.

But we'll done and keep your chin up as you say we need a sense of humour.

Regards

Eian

Hwife1 profile image
Hwife1

Excellant news. Hope this continues for you

Sharp5Flat13 profile image
Sharp5Flat13

Thanks for sharing. One day I hope we can both communicate what it is like to have a "new" set of lungs and the problems of immunosuppression.

soulboy118 profile image
soulboy118 in reply to Sharp5Flat13

Lets hope so

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