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Hello

Hema13 profile image
27 Replies

Hello,

I wanted to introduce myself, i am new to this group and it is my first post.

I am awaiting a lung transplant and just got on the waiting list a couple of weeks ago.

Life has been a bit tough at the moment, i am on oxygen 24/7 and even doing the smallest tasks seem so difficult for me… I am on NIV at night and in the day i nebulise twice a day… to be very honest i feel like i am living to take the medication rather then having the medication to help me live !

Anyway i just wanted to say hello and see if there are any other ppl like me and can relate to how i feel.

Hema

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Hema13 profile image
Hema13
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27 Replies
sassy59 profile image
sassy59

Welcome to the forum Hema and I’m sure you’ll hear from others soon. Xxxxx

Burs profile image
Burs

Hi Hema13. I hope you find this forum as friendly and helpful as i have, on good days and bad there is always someone to give advice or a 'hug'. Keep posting xxx love burs xxx

CELAT06 profile image
CELAT06

Hi, Hema, welcome to this very friendly site, you will make lots of friends and gain a lot of knowledge about the different aspects of the various lung diseases we all have to put up with. Yours is a lovely, unusual, name, where does it have it's origins ?

Take care, Christine. XXX

Damon1864 profile image
Damon1864Volunteer

Hello Hema welcome to the site good luck with your transplant hope all goes well for you. Iit really nice to meet you we are all friends here and love having a laugh too. Please keep posting and let us know how you are doing. Have a good night and take care of yourself 😊 Bernadette xx

Hacienda profile image
Hacienda

Hi Hun and Welcome, I do hope you are not waiting Long. I was on the Transplant List for 3 years at QE Birmingham. keep us all updated, we will make you very welcome and respond to any questions you may Have. Love n Hugs. Carolina xxx

Welcome Hema, I think you will like it here.

Spacecat1 profile image
Spacecat1

Hello Hema. Welcome. Well done on getting on the list for lung transplant. I go back June and consultant is going to carry out tests in the hope I can get my name on the list. Hope goes well fit. Yes the breathing can be hard.speak soon

PosyP profile image
PosyP

Hello Hema, I’m quite new too. I have a friend who had a double lung transplant last year, and she is doing so well, the difference is unbelievable

I don’t know how long you have to wait, but what a wonderful opportunity to live a normal life again. I think there are a few people in this forum who have had lung transplants so you will be able to speak to them when they appear.😀 PosyP

HungryHufflepuff profile image
HungryHufflepuff

Greetings and welcome Hema. I hope you don’t have to wait too long for your call 🤞

BrianTaylor profile image
BrianTaylor

Welcome to the group 😊

Gingerapple profile image
Gingerapple

Good morning Hema😊

How nice to meet you 🤗 We are always here to chat with you and make you feel less alone. Every day is a day nearer for your transplant. I hope you have a great start to the week and keep us updated.

Love and hugs, Bev xxx💞

katieoxo60 profile image
katieoxo60

Hello Hema13, welcome to the site, hope all goes well with the transplant and your wait is not too long. Keep as well as possible don't want you to miss this opportunity of a new healthier life. Best Wishes.

Oshgosh profile image
Oshgosh

Hi,sad to hear you’re struggling,

Now you are on the list you have come a long way to just get on the list.

Izb1 profile image
Izb1

Hi Hema and welcome x

simplesprout profile image
simplesprout

Hi hema, i had my assessment a couple of weeks ago and it went well, i just have to have a filling done in may and then im on the list. As sillly as it sounds that a filling can hold it up, that is the situation. There are a few on this site that are waiting and a few that have had the op so you will find people who can answer most of any questions you have. Please dont be to shy to ask, this is a great and very friendly site.

Best wishes.

Ergendl profile image
Ergendl

HI and welcome.

Gingeros profile image
Gingeros

Hi, welcome to the forum. X

Margaret_craft profile image
Margaret_craft

Hello Hema and Welcome. This is a very nice group. We all have our good days and bad days, everyone is very friendly. The banter between everyone is great, and we all have a laugh. Hope all goes well for you. Take care. Hugs xx

Singh07 profile image
Singh07

Welcome to the group.. in the short time I’ve been on here and reading all these exchanges I have found it to help me prepare myself better.

How long have to been in this condition and after how long did you have t go one 24/7 oxygen?

Hema13 profile image
Hema13 in reply to Singh07

Hello I’ve been on oxygen since March 2018 after being admitted to hospital January, February and March. It started

With 15 hours a day. It went very quickly after a couple of months. First I could take it off for some time without feeling it. I have to have it on 24/7.

Singh07 profile image
Singh07 in reply to Hema13

wow.. sorry to hear that.. wish you well.. thanks for sharing

Dedalus profile image
Dedalus

Hello and welcome Hema x

SquirrelsHolt profile image
SquirrelsHolt

Well done for finding us and "welcome" !😀

Hema13 profile image
Hema13 in reply to SquirrelsHolt

Hello everyone Thank You all for the encouragement and support. There are lots of nice and kind people on this site.

This is the first time I’ve ever joined a website, so I appreciate the warm welcome.

Grandmatojack profile image
Grandmatojack

Hi even just reading on here helps. I don’t post a lot but read everyday. I’m also on on oxygen 24/7 and NIV at least 18 hours a day. I feel as my life is controlled by tubes and masks. I was given a nippy by the hospital a few months ago which is a portable NIV so I am trying to get out a bit but the weather isn’t cooperating very much. I just keep going for my family I want to see them for as long as possible. But I do understand how you feel.

Caspiana profile image
Caspiana

Hi Hema. I am also waiting for a transplant!! Welcome! 😊👍👏

Kelda profile image
Kelda

Hi Hema13,

Yep I’m just the same. I be been on the list for about 3 weeks now. I found the process to be very difficult but I am glad that I have made it this far.

I too very limited in what I can do and I’m on oxygen 24:7 and bipap at night. I try not to nebulise but have just had an infection, which has made everything much worse.

I try to be positive and go to fit to Breathe classes for exercise and some gentle walking when I can I also am involved with my local Breathe Easy Group which I really enjoy.

Sometimes it feels like such hard work to keep ‘as well as possible’ but I try to do one thing s day that makes me feel good and live in hope of a better future.

Good luck to you and good health

Love Kelda X

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