Hi Everyone hope you are keeping safe and well.
I am yet to get an exact diagnosis just 'ILD' at the moment. Haven't been able to see my consultant face to face due to lock-down, it's driving me mad (well, madder!) waiting for prognosis. Am on steroids at the moment and my case is being looked at by 'the team' at Papworth Hospital, Cambridge. Just feel a little isolated and down at the moment, love reading your posts my lovelies
Hugs xxx
Hi Kimlu and welcome to the forum. It’s very difficult to get anywhere these days with regards appointments etc. I hope things change soon.
You’re not alone so do come and, chat, ask questions, rant or whatever. You’re amongst friends.
Stay safe xxxxx😘🌈
Hello and welcome 😊 I hope you'll be able to get an appointment soon, and some answers and help here 🐑
Thankyou xxxxx
A very warm welcome to you Kimlu🙂. Hope your appointment comes through soon for you..
Love cx
Thankyou xxxxx
Hi Kimlu and welcome.
Do hope you manage to get sorted soon.
Stay safe and hope that you feel better soon.
Hi and welcome. Sorry that trying to get your problems investigated has come at a difficult time but it's good to know that your case is being looked at even though you haven't been able to have a face to face consult. I hope they give you some feedback soon.
I think many of us with a definite diagnosis are feeling lonely and down at the moment so you are in good company. Best wishes to you.
Hi,I got my ILD DIAGNSS 20 months ago
Loads of bloods,scans,tests.i then I had an emergency y admission fr 11 days.
They gave me the diagnosis,but didn’t really explain it.
When they say they are looking at your case, it will be a multidisciplinary team,who look at all your results.
They will be looking at everything asscates with your condition.
I kn t seems like a long wit,but at least you are in the system,hopefully the steroids will keep some of your symptoms at bay.i hope you get some formation soon.
Hi Kimlu,
Welcome.
Things are looking up in hospitals, so soon you may hear some news.
I would also be careful about going into a hospital, still a lot of Covid-19
going around. I am waiting until end of July, hope I'll be safe til then..
Keep safe and be careful!
Hug, Bev xxx
Hiya Kimlu
It’s always frustrating and worrying waiting at the best of times. Hopefully you will get the prognosis you are waiting for quickly and get a plan in action. In the meantime it’s better to be safe 😃 your definitely not alone, there always someone on this site with uplifting messages and support 👍🏼
Hi Kimlu, I have only been chatting on the group for a couple of weeks people are so friendly and it's nice to talk.
I really hope you get sorted soon xx
You are not alone. Hospitals are somewhat overwhelmed at present and not really a good idea to go near them. I had an operation cancelled and have no idea when I will get it now. It would have been a local anaesthetic as I have been told that with bronchiectasis I will not get a general anaesthetic.
hi Kimlu though I would let you know my experience of diagnoses I was a very heavy smoker and had problem with my chest obviously, eventually went to see doc and after variouse test was told very gravely I had emphysemia, then a few years later had problem with my heart turned out to be atrial fibralitis at the time I questioned wether I had emphysemia, and was told no chronic bronchitis,then a few years ago I collapsed in London and was rushed into st thomases hospital and this time was told I had chronic asthma. after many years I am no 81 I am still not sure what I have but I am still here. moral is don't worry, que serra serra
I felt in much the same way as you Kimlu, well up to last September. In fairness, it was more to do with the Type II Diabetes that my Doctors Practice had neglected to tell me about until the 12-month anniversary. I felt very down, on Oxygen for 15+ hours a day, then referred to the Consultant because of breathing deterioration. Not only did I feel bad, my health was the same.
Speaking to my daughter on the phone last week, I hadn't seen her since Christmas, mainly due to self-isolation, she said: "Dad, you sound so different, you sound so much better". I did think to myself, how could she make that out over the phone. A realisation that we perhaps sound and appear the way we feel.
It was a fair observation because I had changed. Mostly I had changed my mind about myself. Since nothing appeared to be happening in terms of guidance and support, I just decided to do something about it myself.
I read books about diet and looked up guidance on the Internet about help in changing my mind. I didn't so much go on a diet, just changed it to a healthy one [it was the low carb one]. I am not on a diet, so I am not counting calories or anything like that. A healthy diet assists in helping the way we feel. It also boosts our immune system.
If you can find a way of changing your mind about yourself Kimlu, mindfulness or meditation help enormously, also change your diet, while awaiting the hospital appointment, you can change your future whatever the Consultant says. Eventually, you may have some guidance from the Consultant, whatever it happens to be, you will be the one that is making the difference.
The Internet is useful as there are some excellent presentations, even some by Louise Hay, who has written a most excellent book entitled "You Can Heal Yourself." Have a look for both, and I am sure you won't be disappointed. And should you be on the Internet have a look at WildFit.com: okay it is American but contains some very very healthy observations.
To put everything in perspective Kimlu, I have lost 87lbs or 6st3lbs if you prefer, and am no longer on Oxygen; the Type II Diabetes is in remission. I believe the Diabetes has disappeared completely, although without any tests I cannot as yet confirm.
My daughter was right; I have changed! It was really about changing my mind.
Follow your Consultant's guidance when you get it and changing your mind, and your diet will work wonders. I feel ten years younger, and at 72, that's not a bad thing. I am in great spirit as well.
I wish you every success in your journey and trust you will enjoy it too.
Thank you so much for your comments, makes me feel calmer. I have previously lost a lot of weight but its creeping back on so I will certainly have a look at the books you mentioned and get back on my 'healthy eating' regime. Also a couple of people have told me on the phone that I sound much better than I was - progress indeed! Keep safe and well xxxxx
Many thanks to everyone for your replies - really make me feel better. Keep well and safe my lovelies xxxxxx
Advice on lung clearance devices please
Advice please
advice please
Home oxygen advice needed!
