LUNG TRANSPLANT WAITING LIST

[ross-35_]

Is there anywhere I can go to talk to people who are on this list? I really need some one who understands?

[Thomac]

Hi there may be a support group attached to your transplant hospital. I know there is a very good one at the Freeman. The freeman heart and lung transplant association.

[ross-35_ in reply to Thomac]

thank you.

[sunnyday22]

Hi I’m on the list if I can help contact me

[ross-35_ in reply to sunnyday22]

How long have you been waiting sunnyday?

[sunnyday22 in reply to ross-35_]

It will be a year in April. How long have you been on the list and what hospital

[ross-35_ in reply to sunnyday22]

It will be a year in May. I am going to Wythenshawe Hospital Manchester. Do you ever feel like the transplant will come too late?

[sunnyday22 in reply to ross-35_]

Yes as I know i am getting worse but at least we have hope that we’re get the phone call. I have IPF and on oxygen 24 / 7 up February 2016 I was still living a normal life caught a chest infection went into hospital and came like this. I now can’t do anything. I know that if wasn’t for my wife I would not be here now. She has to help me do everything. So please let’s get the phone call

[ross-35_ in reply to sunnyday22]

Yes lets get that call! I am pleased you have a good wife to look after you...she will be priceless, look after her the best way you can ..compliments cost nothing!! Take care

[Caspiana]

Hello Ross. I am on the waiting list for a single lung. There is a Facebook group especially for pre transplant and post transplant folk. If you'd like the link please message me I can send it to you. 😊

I know it's terribly difficult.

Warm wishes.

Cas xx 🍀

[ross-35_ in reply to Caspiana]

Hi what a good idea... . Thanks so much [Edited by moderator to remove Facebook details.]

[Caspiana in reply to ross-35_]

Hello there. Just send you a message here on HU with the link. 😊

[sibkev]

oioi what do you wanna know i had mine 2 years ago yesterday plz feel free to ask me anything

[Caspiana in reply to sibkev]

Hope you are doing well there sibkev . 🌻

[sibkev in reply to Caspiana]

im ok how you doin

[Caspiana in reply to sibkev]

Hanging on. 😊

[sibkev in reply to Caspiana]

you stay in there

[Caspiana in reply to sibkev]

Doing my best! 😵

[Hidden]

Hope u find what your looking 4

[Hacienda]

Hi ross, only just read your Question.

I too am on the Waiting List for Double Lung Transplant, almost 2 years now. What would you like to Know ?

[ross-35_ in reply to Hacienda]

hi there, just wondering if anyone gets to the point where they think it may not happen...I am only nearly one year waiting but i am 64...panic sets in. Do you ever get this?

[Hacienda in reply to ross-35_]

Yes Sweetie, I'm a young 66 ha ha, I have had a few moments of Anxiety, got through them with help from Hubby & GP, No meds for this, didn't want them. I'm determined to stay that way, Have to keep Positive and exercise as much as you can, I do all my Rehab, Exercise & Gym on Oxygen. I am however going to be assessed for Lung Reduction and will know more in April, I will also Stay on the List even if it works initially. I will keep you updated on my Posts, Never Give up Hun, Stay Strong. and keep intouch.

Carolina XXXX

[Belle25471954]

Went on the list in march as I have A1AT. Mum is a carrier (this was discovered when she was 90) and both her children have this. It's just taken me over 6 months to recover from the effects of a chest infection. I do try to live with it as best I can and am on oxygen 16 hours a day which helps when exercising. Awaiting a place at tai chi and continuing pulmonary rehab exercises plus a short stroll daily.

Good luck everyone x