Hello, I am new here and from Japan, wish my country had site like this. I started to have lung problem as part of complication called GVHD which is from my stem cell transplant from blood cancer, i have other several complications but this is the hardest one. I was in the hospital for three weeks in October and my doctor advised me to take oxygen back home. i use it sometimes when i feel short of breathe or go out walk long distance like visiting hospital but I have not given much information about my lung problem. I also feel sad sometimes but i am not getting much help about it , either. Anyway, i try to stay positive and I thought in this site I could chat with people and share thought and informations. Thank you for reading.
Hello: Hello, I am new here and from... - British Lung Foun...
Hello Nonchan, and a very warm welcome to you. You're right, this is an excellent site.......lots of lovely people with great advice and support. Sorry that you're feeling down, but call in anytime and someone will always be there to give advice and support.
Look forward to hearing more from you soon.
Hi nonchan and Welcome to our community. If you have any questions or just want to chat there are lots of friendly people on here that will help you in any way they can.
Considering the problems you have, you are still trying to remain positive and I commend you for that. I know from experience that having a positive attitude not only helps you but also those around you.
I am an ambulatory Oxygen user myself and find it very useful. Without it I would find it very difficult to do lots of things so don't be afraid to use it if you feel the need. I can manage to do most things although a bit slower.
I hope you find our forum useful and make some new friends.
Hello, John , thank you for kind comment, yes i was very afraid of oxygen machine when i got it at the hospital, i was told by a few people i should use it more to make myself better, i am ok if i sit around or walk inside if house except stairs. I like going out to super or restaurants, i always have my oxygen which i can walk with in my car when i go out. Hope to chat with you soon. I am glad i can talk to people who use oxygen or have similar problem with me because i have nobody around me to talk about it. Please take care and have a great day.
Hi good to meet you. There is at least 1 more member from Japan on here and I hope she sees your post.
I have a friend who developed copd from a stem cell transplant as well but for non hodgkins lymphoma. It didn't work for her and she was very ill for ages. Now it has destroyed one of her lungs. She does manage without oxygen though, at least for the time being. x
Hi my friend had it from her brother. She has been offered the chance to have another one but using her own stem cells, but she has not decided whether to go ahead. x
Welcome nonchan, I'm glad you found your way here. You'll get plenty of help along the way. I use oxygen too, it takes some time getting use to it. Keep talking to your doctor about the sadness you're feeling until they listen. Positive thinking is so important for your health and we need to do everything possible for ourselves.
Thank you, Krysta, I feel like I don't get much help mentally here, I was shocked when they brought me oxygen when I was in hospital and told me to go home with it, took me for a while to accept and feel positive about it, actually my chemist or nurses told me to do anything to make me feel better and treat yourself. I cried a lot and still do, sometimes just sad and sometimes feel so thankful, like now I read so many welcome message , I feel so thankful and cry. Yes , I try to stay positive and I think it's very important and also feel peace of mind. Hope to chat with you soon. Please take care and have a lovely day.
That's unfortunate that you don't have help mentally where you are, but the people of this forum will be a very positive influence for you. Those of us on oxygen don't really want to be....we have to find a way to accept it and that takes time. Do you have any interests that will help take your mind off of being ill and everything that comes with that like gardening or painting?
You have a lovely day too!
Yes I think I am still going through shock and taking some time to accept what is happening.... I have very limited thing I can do now since I am under medication to lower immune so I can't do gardening or have pets, I just have to wait for medication to finish. I like going for drive in the country, going out for breakfast or lunch and see friends and chat. Since I can't travel or have to avoid big crowd, my friends tell me that I should have new hobby which I can enjoy at home. I was always very outgoing but this will change my life into introvert I think . Learn to enjoy things at home. Maybe start tea ceremony lesson again. How about you ? what do you do to enjoy ?
nonchan, I enjoy spending time with my grandchildren, they bring so much joy to my life. Gardening is a passion of mine.....houseplants can be just as rewarding as outdoor gardens. Some members have taken up a musical instrument others sing(good for the lungs). Tea Ceremony sounds like a good idea.
None of us likes having to give up our independence so do the best you can to keep your health up with exercise, healthy eating, taking your medication like you're suppose to and I think you'll find you will be able to do much more than you think possible right now.