Lung transplant 3 day accesment

[skylas]

As anybody ad to have the 3 day tests done again cause they been on the list so long

[Caspiana]

Hey Cheryl, 👋

I didn't realise you have been in the list that long?? How long have you been on? I thought it was sometime last year you became active?? xx 😳

[skylas in reply to Caspiana]

Yea fink 5 months I was just asking to c if u get to a certain time n have to have the tests done again incase something comes up or changes I no every hospital different just wanted to c what everyone says x how u feeling today x

[Caspiana in reply to skylas]

I never had another assessment and I waited twenty seven months, but I suppose every hospital is different. xx 😣

[skylas in reply to Caspiana]

Aw thanks I hope not x

[soulboy118 in reply to skylas]

They have to to-do the tests every 2 years, well wythenshawe does anyway

[skylas in reply to soulboy118]

Aw thanks for letting me no hope I get transplant b4 the 2 years then I've only Bannon it 5 months x how u doin x cheryl x

[soulboy118 in reply to skylas]

I'm doing ok thanks actually Skylar, they have me on a watch and wait list as I declined to go on the transplant list , they still see me every 6mths to follow my progress, I can put myself back on the list at anytime I just have to keep myself ready for it ( pul rehab ,diet ,keeping to medicines regime and importantly psychologically sound ,I dont know about the last one though, lol )

Hope your ok x

[skylas in reply to soulboy118]

Ha x u will no when u r ready to go on list wont u . To b truthfully I'm not ready for the op but I'm sick of havin no life n not bn able to do stuff n I dint want to get so bad that they said no x stay as well as u can xx cheryl xxx

[soulboy118 in reply to skylas]

I'll know when the time is right for me to go on the transplant list cheryl, now is not that time.You will know when it's time for you to have the op or at least go on the list

Being limited is a pain on what we can and cannot do , we have unlimited capability in our minds but our lungs say otherwise but we can do things to improve our lot .thankfully I'm still me and I'm not lost in this illness no matter how much some days can be a struggle, stay positive and decide for yourself if or when you go on the list, there is no right and wrong decision about lung transplant but there is a decision that's right for you , good luck .

Dave x

[skylas in reply to soulboy118]

Hi dave I'm already on the list bn on it bout 5 months I've got few other issues like a hernia n hollow bones n very high heart rate so dint fink I'd get on it so I'm glad I did but they said cause I'm only 5 foot 1 they dont come around that much but they still do so god noes how long i b waiting x your rite we have to try n make the best of what we can it's hard though int it x keep well x cheryl xx

[Joseph260268 in reply to soulboy118]

Thank you soulboy118,

I had my initial 3 day testing done at Wythenshawe and I have now been listed over 2 years so fingers crossed after Covid, I will get a call back to do the tests again.

[MELNEL]

Hi, I had a talk regarding to lung transplant with my doctor in hospital, and had some long talk about it. And he gave me some Documents for the assignment what would be held at Newcastle, it takes up to 3 days to get all the test done. Best if luck!! Stay safe and well 🌹🌹🌹

[Caspiana in reply to MELNEL]

Hi Mel. skylas has been on the list for some time now. Three days isn't so bad I think. In Japan it's two weeks inpatient 🏥 too. It was very tiring. Good luck with your assessment. xx 🍀🐞🌿

[skylas in reply to MELNEL]

Hi mel yea as cas said yea I'm already on the list I was just asking do i have to have tests done again if your on the list for so long xxx hope u r well xxx

[skylas in reply to MELNEL]

Ps r u on the transplant list x

[MELNEL in reply to skylas]

Hola, unfortunately not jet I had long talks with the Doctors. I am still to young to risk this procedure. I would need a double transplant. I do alright ATM because all my other Organs are in good health. So there didn't say no, but only not jet.

So I try to stay positive, I know it's hard sometimes but if I would give up hope there would be nothing left.

🌹🌹🌹🌹

[skylas in reply to MELNEL]

How old r u x I'm 49 x yea if u can put it off for as long as u can .until u need it n staying positive is important int it . I need a double lung transplant also x

[LyndaH49]

Unfortunately I did not qualify for a lung transplant because of my weight.

Good luck

[skylas in reply to LyndaH49]

Aw no way x why cause u were to light or to heavy x

[skylas in reply to LyndaH49]

Cant u c the diettrishan who mite b able to help. When I stopped smoking I put on 2 n half stone my consultant said dont put on no more .its hard though when u cant move about to work it off n I'm on high steroids all the time x

[2pray4us]

hello skylas.. ..it really depends on the hospital that you go to. I live in new jersey and go to temple lung in phila,pa. most test here are redone every six months depending on the seriousness of your copd.

[skylas in reply to 2pray4us]

Il ask them when I nex go in August if it dunt get cancelled again x I hope I dont have to go threw all the testing again x but if I've got to I've got to x hope u r well x

[2pray4us in reply to skylas]

hello again...Im sure you will have to do the breathing testing and the 6min walk again but maybe thats it. Like I said it depends where you go. I wish you the best. God bless you and be with you.

[skylas in reply to 2pray4us]

Yea your rite I'll prob have to have them .I just dint want the heart one threw your groin and the others where u have to stay in hospital for the 3 days .but I've bn told if u on the list more than 2 years u have to go threw it again . If I've got to I've got to. I'm hoping I get my call b4 the 2 years I've only bn on it 5 months so time will tell thanks for getting bck to me x take care x cheryl x

[Richiebalpha1]

Hiya Skyla,

I had my 3 day assessment at wythenshawe 2yrs ago in June time. I’m not on the active list but I get reviewed every 3 months, but was told that I might need to undertake the tests again if and when I’m put on the active list.

Hope this helps x

[skylas in reply to Richiebalpha1]

Can I ask why your not on the active lung transplant list x

[skylas in reply to Richiebalpha1]

Aw sorry I've just red your story aw u have n r goin threw the wars I pray u b ok x take care xxx

[Richiebalpha1 in reply to skylas]

Thank you xx,

I’m nearly at my 5 yr point just had to give bloods the other day to check that the cancer hasn’t returned, but it’s a fine balance when to go for the transplant my doctor at wythenshawe is great and really supporting and tells me what I want to hear without fluffing it up which is brill.

I’m on LTOT now 3tlrs for 15 hrs my issue is if I try and do anything physical my o2 stats plummet so need 8lts for ambulatory but can’t do too much.

Keep smiling and here if you need to chat or ask anything xx

[skylas in reply to Richiebalpha1]

So r u guna go for the transplant any time soon x who is your doctor at wythenshawe will u reply in the message part its easyer for me to find x

[HungryHufflepuff in reply to Richiebalpha1]

Hi Richiebalpha1 I hope you get back on the active list soon 🤞

[Caspiana in reply to Richiebalpha1]

I hope you can be reactivated soon Richiebalpha1 . You've really done so well to have overcome this really long wait. Take care. xx 🍀

[Hidden]

My wife was on the list for fourteen months. Because you are required to attend the hospital every six weeks for ongoing tests and check ups they have a pretty good idea of how your health is.

[Caspiana in reply to Hidden]

😁👋

[skylas in reply to Hidden]

Aw thanks for replying I only go every 3 months n not for tests just to c consultant I'm at wythenshawe hospital x hope u r well x ps I'm in uk .I've just c your in Australia x

[Hidden]

Yes Skylas From "Down Under." I empathise with you after reading on your health system and likewise those in the USA. No wonder why folk call us the "lucky country." My wife suffered with IPF for2 years before receiving a bilateral lung transplant in 2016. Our health system in Australia is really great. We attend the hospital clinic every six weeks (Pre Tx) and undergo a spirometry test every second visit, meet with a lung doctor every visit, bloods every visit and always meet with one of the Tx team each visit. Prior to being accepted to go on the list my wife entered hospital for three days, having many tests over this period before coming home. On our next visit we signed the paperwork and were placed on the list. Next back in hospital (day) for an Angeogram. Then the wait. I pray that everything will go smoothly for you. If you would like anymore info I am sure my good friend Caspiana would be most helpful, albeit she is in Japan and may have different wait list procedures, likewise as we do in Australia. But the general format will be similar. GOD Bless Will

[Caspiana in reply to Hidden]

Our systems are very similar Will. Cheryl and I talk often. xx 😊

[skylas in reply to Hidden]

Hi yea u r the lucky country ha ours is good though n like u say every country as there own way .yes I talk to cas a lot on messenger . Hows your wife doin now x take care both of u x love cheryl x

[Hidden]

Thank you and good luck on your journey