It started May 2015 from the day I got pneumonia sepsis, and of which was the start of my problems!
I have been told by a American pulmonary disease professor that I have ILD, and been told by a couple of British physicians, yet there are a lot of doctors that seem to confuse matters by saying that there is nothing wrong.
I am awaiting a final assessment on the need now for ambulatory oxygen as my sats drop upon exertion, and feel tired all day long.
I've been told I'm overweight yet I've been on off prednislone (40mg) for 2 years and put on 4 stone as a result as well as not being well enough to exercise like I used too before all this started.
I turn 40 in July and really fear that my future is bleak!
Love to all x
J 😘
Written by
Billyknight1977
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Sending you best wishes, stay positive, things can improve. I have bronchiectasis and go on preds. I just live one day at a time. Staying positive really helps.
Can take ages to get over such evnts GOOD thing is your on steriods to cut inflamation.
My lung doctor told me steriods losen mucus and breathing will be worse befour gets better.
Doctors with bronchiectasis dx do change the minds quite offten.
But fibrosis or ild are quite commen in bronchiectasis but thats further down the line doctors try drop bomb shells.
I would worry about feeling better and being posative YOU survived sepsis so lungs cant be that bad THATs what i would say to myself
That is an astounding number of admissions. How very difficult for you. I'm sorry to hear this.
It seems like you have seen a few doctors does the diagnosis of ILD seem to be the prevailing one? If so are you currently under a gp that is on the course to some kind of treatment or a possible transplant seeing as you are still quite young at 39.
How low do your sats drop upon exertion? If they drop to the point that you need ambulatory oxygen then it's great that you may be getting help in that department soon. It will give you more energy and help you get out more thus helping your weight concerns as well.
I have been on Prednislone for almost a year and gained a few pounds but it's not too extreme. Today my doctor started weaning me off so I will be off it in a few months I hope. I am glad as my puffy face is getting me down.
You and I are quite close in age and I think you would agree we want to live longer and do the things we thought we couldn't do. For me that would be running again, taking up tennis and traveling amongst other things. What do you want to do?
Take it a day at a time. Getting your O2 needs sorted will help you get on your feet more. Get help to start yourself off. Pulmonary rehabilitation helps many people and you get support from fellow participants if you haven't already started. Please don't think this is the end.
We have these diseases. We accept it. And have to work with it. I think we can. 😊👐
My sats dropped dropped during the day and were dangerously low at night. Since starting CPAP there has been a remarkable improvement in my sata, I no longer have restless legs and my muscle pain has reduced by at least 30%.
Over a 2 yr period living in Thailand i been in hospital 10-12 times with bronchitis (cronic ) 8 times, they just pumped drip antibiotics into me and tons of steroids & prendislone whch are full of steroids, the worst stuff you can take, gave me high blood sugar which i never ever suffered with, my mustels shrunk, feet swelling, and very tired legs,. Lots of cramp in the feet & legs.
Over the last 5 months never ever having prendislone i have improved 100%. And stopped smoking.
Read up on prednisone/prendislone on Google it will scare the hell,out of you with the after effects.
Hi, Please try not to be fearful. I was diagnosed with lupus (MCTD) in 2006 after years of been told it was ME.
IN 2007 After years of breathlessness I was finally told the lupus has damaged the base of my lungs (Pulmonary Fibrosis). I eventually asked if I could be given ambulatory oxygen in 2012 while I was an in patient and still suffering from breathlessness.
I was given an appointment to se a Pulmonary consultant who then arranged for me to be assessed for the ambulatory oxygen, which I now use and I even have to use it for talking and laughing and having a shower and getting dressed and undress.
I have been on Prednisolone for some time and depending on certain treatments I have to have extra steroid in the form of an infusion. My weight is always yo-yoing and I try to keep my weight down by using Diet Chef meals and trying to eat healthy. I have lost weight by going to weight watchers but with the other you don't have to count calories or weigh food. loosing weight even on steroid can be achieved even if you are not active.
Hope this helps, I still have an active social life and I don't travel by aeroplane anymore but I go on cruises instead and you can pay for the oxygen which will be delivered to the cruise ship. I bought a portable oxygen concentrator last year which will save me a lot of money.
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