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ukwdwnut
08-09-2011, 08:35 PM
got back from papworth yesterday evening and the news is i have to have a double lung transplant. i had to go back today for a bone scan to see if my bones are strong enough for the op, the results of which will be sent to addenbrooks for analysis. the results will be known in 2 weeks. also have to have a report from the dentist to make sure i have no teeth or gum infections because i will have my immune system killed off for the opso any infection there could be very serious. also have to have an angiogram next wednesday at the royal free in london. if all is well then i immediately go on the transplant list then its just a matter off time and wait for the apprpriate donor lungs to become available. was told at papworth the op is only offered if you have around 2 years to live, so i guess as i am now thats all ive got left so its a no brainer to have the op even though the odds of long term survival are not great. so im even more scared right now than i was before :( :eek3:

chief
08-09-2011, 08:46 PM
ahh mick, wow, it hits you when they tell you like it is. hope you wont need to wait too long, keep smiling:hug2:
sara x

Wendy
08-09-2011, 11:34 PM
:hug2: :hug2: Mick, I don't really know what to say :sigh: I hope the results you are waiting for a good and that a transplant becomes available soon. Take care hun :hug2: :hug2:

Tink
09-09-2011, 01:05 AM
OK. Mick. At least we know. Now, lets plan the plan. Stay safe. Strengthen yourself as much as you can (without risking your health). Start eating stupidly healthy foods. I'm serious, all these things matter.

Oh, and prepare to be bossed to death. I am SO bossy when I'm worried about someone I care about!

Now. We are all here with you and will walk every single step with you. It's going to be a journey that we all take together.

Get a good lappie, with an aircard. We'll need to keep in touch no matter where you are.

(I warned you about the bossy bit).

Wendy
09-09-2011, 01:56 AM
Not bossy at all, just caring :D :hug2:

Shellyamc
09-09-2011, 02:25 AM
No words..just thoughts and hugs and being here :hug2:

daveann
09-09-2011, 06:44 AM
:comfort:

Kate
09-09-2011, 07:00 AM
:hug2:

Deb
09-09-2011, 08:17 AM
I echo everything that Think said. She is a wise, wise lady. Put your focus onto being as healthy as you possibly can for this. Give yourself the very best chance.

A huge hug Mick :hug2: Oh, and another one, just because :hug2:

MystikPiglit
09-09-2011, 08:37 AM
Gentle :comfort: and sending you bucketfuls of :pixiedust:

uscwest
09-09-2011, 11:21 AM
Wow Mick that must have hit like a ton of bricks, though I gather you were sort of expecting it. Hope that all the tests come out OK and though I don't wish death on anyone I hope an appropriate pair of lungs becomes available.

Dawn
09-09-2011, 02:33 PM
:hug2:

josh.p.
09-09-2011, 03:11 PM
:hug2: Stay strong mate, we are all behind you every step of the way.

Mags
09-09-2011, 04:20 PM
Boy oh boy Mick! The road ahead looks like a difficult one and I wish you all the very best and good luck with your treatment. I would be nervous as well but I know you can do it. You are a tough old (well young!) cookie and Im sure you can do it. Take care. x

Mags

Slowhand
09-09-2011, 04:29 PM
I really can`t put my thoughts into words Mike, but for what it`s worth I`m with you every step of the way. :hug2: [That`s a man hug BTW :lol:]

Johnie
09-09-2011, 04:39 PM
:hug2::hug2::hug2::hug2::hug2:

DisneyFreak
09-09-2011, 04:40 PM
:comfort:

We'll all be here with you Mick through every step.

uscwest
09-09-2011, 05:54 PM
I really can`t put my thoughts into words Mike, but for what it`s worth I`m with you every step of the way. :hug2: [That`s a man hug BTW :lol:]
Hey Terry, how come you are stealing my man hugs? LOL :hug2:

Britchick
09-09-2011, 06:39 PM
:hug2:

lisaw
09-09-2011, 07:01 PM
So sorry to hear that Mick - stay strong and like others have said look after yourself. :hug2:

Dorothy
09-09-2011, 08:57 PM
Just take it one day at time my friend :hug2: :hug2:

ukwdwnut
12-09-2011, 08:23 AM
thank you so much for your words of kindness and positiveness, i wish i could be real positive right now but i guess that will come later when i get my head round whats going to happen and could happen not too far in the future. its so hard knowing that i may have only five years left on this planet, thats the one thing i really cant take in at the moment :(

:hug2::hug2: to you all, btw john and terry they are also man hugs ;) :lol:

catrancher
12-09-2011, 10:47 AM
Geez Mick! :eek:

I get busy and haven't been able to be on much and when I do get to pop in, I see this.

I really don't know what to say. Stay strong my friend and know that I, like the others on this group, are here for you if you need us. :hug2:

Tom (:macwave:... that's a man hug too. Just wasn't around for the group one with Terry and John. :D)

Watchinherskip
12-09-2011, 01:33 PM
Mick, so sorry to hear the news mate. Just know you will be in my family's prayers each day. Stay strong and fight the good fight.

Dan

Deafjeff
12-09-2011, 01:56 PM
Just saw this message :sorry:

Sending my thoughts to you.

Here is another man hug :hug2:

Tinkfan
13-09-2011, 01:16 AM
one day at a time dear. don't try to take in it all at once. let's get through the first stage firsr. We're all here for you.:hug2:

ukwdwnut
13-09-2011, 07:50 AM
thanks guys

im trying to be as positive as i can be and put the life expectancy part of it at the back of my mind. now im trying to concentrate on the fact that as i am now i have no quality of life at all really, but after the op IF i have it my quality of life will be the same as anyone else who is fit and healthy :yes: :D

and when i get back to disney, which will not be at minimum 1 year after the op, not allowed to fly until then, i can ride all my fave coasters again :lol:

foreverducky
13-09-2011, 09:01 AM
Whew, that's a lot to absorb.

Not only do you need to be physically strong and healthy, you need to try to keep a positive outlook. The mental stuff matters too.

I'm not saying that's easy, because it's not. But then that's why we're here. :yes:

Am thinking of you. :hug2:

(Btw, I would have loved to have seen the manly group hug) :lol:

Deafjeff
13-09-2011, 09:02 AM
Here is another man hug

:hug2:

MystikPiglit
13-09-2011, 09:39 AM
Another :hug2: for you.
Remember we still have a postponed MK meet-up to arrange. :overhere::nodboo:

Lisa1976
13-09-2011, 11:40 AM
:hug2:

ukwdwnut
13-09-2011, 03:06 PM
(Btw, I would have loved to have seen the manly group hug) :lol:

i dont think you would it got a bit messy :lol:



Another :hug2: for you.
Remember we still have a postponed MK meet-up to arrange. :overhere::nodboo:

yes we do dont we diane :)

Sam
18-09-2011, 11:37 AM
My lovely mate

Be strong. I've mentioned to you about my neice who is in palative care and how inspirational she is. The last 2 weeks she has been on BBC 1 Wales on Beautiful Lives, story of a children's hospice. If you get the chance try to see the last one on Itunes. She is amazing and I know if you see her it will help.

Amy Claire has a plaque in her room which says "don't count the days, make the day's count", she lives by that and I think that we all should too.

Here for you always.

:hug2::hug2::hug2::hug2::hug2::hug2::hug2:

Deafjeff
18-09-2011, 11:46 AM
My lovely mate

Be strong. I've mentioned to you about my neice who is in palative care and how inspirational she is. The last 2 weeks she has been on BBC 1 Wales on Beautiful Lives, story of a children's hospice. If you get the chance try to see the last one on Itunes. She is amazing and I know if you see her it will help.

Amy Claire has a plaque in her room which says "don't count the days, make the day's count", she lives by that and I think that we all should too.

Here for you always.

:hug2::hug2::hug2::hug2::hug2::hug2::hug2:

I have been following the series and it is such amazing. Amy Claire is amazing!

ukwdwnut
23-09-2011, 11:36 PM
Just to let you all know.

My bone scan that was sent to addenbrooks for analysis. The results have come back, I got a call from papworth yesterday and all looks good, my bone density is ok to have the op. They also got the results of the angiogram and there are totally no thinning of my arteries. So two great results. All I need to have done now is getting a few fillings, one extraction where the tooth cracked, and see the hygienist.

catrancher
24-09-2011, 02:51 AM
Goodonya Mick! :thumbsup:

See, some good news. You deserve it and it's the first step in the right direction.

Tom (:macwave:... things are looking up!)

daveann
24-09-2011, 06:45 AM
That's good news :comfort:

ukwdwnut
24-09-2011, 06:52 AM
It all hinged on that bone scan result or I was dead in the water for the op. I'm soooooo glad it was in my favour. Now I can go on the list by the end of October when my dental work is complete :D

uscwest
24-09-2011, 02:17 PM
Great news Mick.

Mags
25-09-2011, 10:20 PM
Well, that is some good news at least Mick. I wish you well for everything that follows. x

Mags

ukwdwnut
26-09-2011, 08:47 AM
yep great news indeed.

thx mags appreciate it :)

MystikPiglit
26-09-2011, 01:15 PM
Well, that's a great first step. :hug2:
You can pass the time, until the end of October, by looking at WDW brochures. :D

ukwdwnut
29-09-2011, 05:38 PM
Well, that's a great first step. :hug2:
You can pass the time, until the end of October, by looking at WDW brochures. :D

i dont half wish i could go earlier diane, im getting itchy feet already :lol:

Beccaberry
29-09-2011, 08:09 PM
:hug2:

MystikPiglit
30-09-2011, 10:50 AM
i dont half wish i could go earlier diane, im getting itchy feet already :lol:

:lol: Me too, we won't be going back before 2013.

ukwdwnut
30-09-2011, 11:02 AM
:lol: Me too, we won't be going back before 2013.

well after my op we have plans a foot to release all the money in the house so we can go on a budget maybe every year so the money isnt wasted and do more things we cant do at present. and who knows how long i will be around so i want to have the best time pos while im here :D

MystikPiglit
30-09-2011, 01:17 PM
so we can go on a budget maybe every year so the money isnt wasted and do more things we cant do at present.

Go for it. :yes: :hug2:

ukwdwnut
05-10-2011, 09:29 AM
good news all

i spent 21/2hrs up at papworth talking to on of the transplant continuing care team yesterday, and he wants to forward my date going on the donor list because my dental treatment is just routine and didnt show up any underlying infections. he just has to clear it with his peers in the team and the consultants, he said that should just be routine tho. i asked him what was the quickest in his experience that a patient had had a transplant after going on the list and he said 22hrs, so it could be as quick as that, usually its around 9-12 months but could be anytime.

i have no tissue type problems at all so the pool that i go in, all donor lungs that go in that pool will be suitable for me which is fantasmic news. he also said, all of the foods that are supposedly wrong for you EAT EAT and EAT the more the better:lol: my BMI is spot on but could do with putting some more weight on as post op i will lose a lot of weight initially then then start to eat like a pig :lol: he also said after a few days of coming out of ICU i will go to the gym i laughed at him as i thought he was joking as ive never set foot inside a gym or done any exercise in my life. but i have to go on a treadmill to get me breathing and my new lungs working as well as can be, which is understandable

Tink
05-10-2011, 09:43 AM
A whole new life for you Mick. You are going to have someone in your family keep us posted, yes? Maybe Lauren could pop in here from time to time to give us an update on how you are doing? Just until you get well enough to do it yourself, of course. :D

ukwdwnut
05-10-2011, 11:16 AM
A whole new life for you Mick. You are going to have someone in your family keep us posted, yes? Maybe Lauren could pop in here from time to time to give us an update on how you are doing? Just until you get well enough to do it yourself, of course. :D

yes definitely a whole new life tink. i will see what i can do in that respect of keeping you informed of the op and my progress over the days i will be in ICU

lauren just text me and she said that in the states a lung transplant, all the drugs and aftercare would cost 700.000. omg what would you do there if you had no insurence or means of paying. die i guess

catrancher
05-10-2011, 12:12 PM
Good for you Mick!

Best of luck with the whole process. :thumbsup:

Tom (:macwave:... :fingers:)

ukwdwnut
05-10-2011, 03:04 PM
Good for you Mick!

Best of luck with the whole process. :thumbsup:

Tom (:macwave:... :fingers:)

Thanks Tom

Tink
06-10-2011, 12:37 AM
yes definitely a whole new life tink. i will see what i can do in that respect of keeping you informed of the op and my progress over the days i will be in ICU

lauren just text me and she said that in the states a lung transplant, all the drugs and aftercare would cost 700.000. omg what would you do there if you had no insurence or means of paying. die i guess

Yes, Mick. Unfortunately that is the case. The US is actually rationing drugs now. No one wants to admit it and the pharmaceutical companies are trying to keep it dead quiet, but it's happening. :(

Be very thankful (I know you are) that you are in the UK and have a truly human based medical system. :hug2:

Wendy
06-10-2011, 06:56 AM
:hug2: great news Mick, I am so happy they are able to move you to the list earlier :hug2: it's brilliant news.

You have a brilliant health service up there :yes: I'm just thankful that you live in the right part of the country.

ukwdwnut
06-10-2011, 10:02 AM
Yes, Mick. Unfortunately that is the case. The US is actually rationing drugs now. No one wants to admit it and the pharmaceutical companies are trying to keep it dead quiet, but it's happening. :(

Be very thankful (I know you are) that you are in the UK and have a truly human based medical system. :hug2:


wow i cant seriously believe a country as big as the US are actually rationing drugs, how can that be when they find billions of dollars to go to war when it suits. thats unbelievable, shocking even.



:hug2: great news Mick, I am so happy they are able to move you to the list earlier :hug2: it's brilliant news.

You have a brilliant health service up there :yes: I'm just thankful that you live in the right part of the country.


brilliant news isn't it :D

you know wen throughout the 5yrs since i was diagnosed i cannot fault, the service i have been given, from my doctor, who seems more up on things these days and very understanding. to basildon hospital, where i was first admitted for three weeks undergoing every conceivable test imaginable, then the royal free in hampstead who have just been amazing and have even donated money to laurens run for life for the pulmonary arterial hypertension charity and more recently papworth hospital. everyone has be just totally amazing. as you say im so glad i live in the area i do that my health authority is stumping up over 100k pa in drugs for me, whithout which i would have been dead a long while ago. so to those i am sincerely forever greatful :D :hug2::hug2:

Kate
06-10-2011, 10:07 AM
700,000?! OMG!!!
Thats dreadful drugs are being rationed :(

Mick, im so pleased you are moving up the list - wonderful news!! If they get what you need and ring you up is it a case of dropping everything and going straight there?

ukwdwnut
06-10-2011, 10:23 AM
700,000?! OMG!!!
Thats dreadful drugs are being rationed :(

Mick, im so pleased you are moving up the list - wonderful news!! If they get what you need and ring you up is it a case of dropping everything and going straight there?

kate the drugs alone that im using now come to over 100.000

as from friday i have to have my travel bag at the ready. what happens is, if a pair of suitable lungs are found they are send to addenbrooks, then a team from papworth go there to check out the lung to see if they are able to be used in a transplant. prior to that a car is sent out close to my location and just sits and waits for their call. if he gets the call that all is well he then procedes to my location whereby im transported as quick as pos if need be to papworth for the transplant. where im prepped and ready to go

MystikPiglit
06-10-2011, 10:39 AM
I am so pleased to hear your news, Mick. :hug2:


as from friday i have to have my travel bag at the ready.

:fingers: for a speedy resolution. And, of course, lots of :pdust:

Kate
06-10-2011, 10:54 AM
Oh gosh, its all going to happen so quickly isnt it!

Wendy
06-10-2011, 10:55 AM
you know wen throughout the 5yrs since i was diagnosed i cannot fault, the service i have been given, from my doctor, who seems more up on things these days and very understanding. to basildon hospital, where i was first admitted for three weeks undergoing every conceivable test imaginable, then the royal free in hampstead who have just been amazing and have even donated money to laurens run for life for the pulmonary arterial hypertension charity and more recently papworth hospital. everyone has be just totally amazing. as you say im so glad i live in the area i do that my health authority is stumping up over 100k pa in drugs for me, whithout which i would have been dead a long while ago. so to those i am sincerely forever greatful :D :hug2::hug2:



It's excellent the way they have looked after you :hug2: It's definitely a post code lottery with the NHS in this country :(

I really am so happy for you that things are moving forward :hug2: Let's hope the wait isn't too long :fingers: :hug2: Have they given you a pager in case you aren't at home :unsure:

ukwdwnut
06-10-2011, 11:35 AM
It's excellent the way they have looked after you :hug2: It's definitely a post code lottery with the NHS in this country :(

I really am so happy for you that things are moving forward :hug2: Let's hope the wait isn't too long :fingers: :hug2: Have they given you a pager in case you aren't at home :unsure:

I know I'm very lucky indeed. No no got a pager, they have taken mine, dens and Laurens mobile no's also told us to keep em charged at all times also told to let them know if I'm away from home they want to know where I am so they know where to have a car standing by to get me

Slowhand
06-10-2011, 04:18 PM
That`s great news Mike.
Hopefully things will now happen sooner rather than later for you. :fingers:

ukwdwnut
06-10-2011, 09:07 PM
That`s great news Mike.
Hopefully things will now happen sooner rather than later for you. :fingers:

thx terry. :)