Low oxygen transfer

[Letitgo]

Hi. Hoping someone might know about low oxygen transfer. Hubby has CTD-ILD. Waiting to see Rheumatoid Consultant. Respiratory Consultant doesn’t seem concerned about lungs so we are hoping that once the auto immune disease is under control he will be ok, get out and about again and even hopefully get back to work. We were told FEV results were fine but oxygen transfer low. TLCO 5.26 46.2% and KCO 0.90 61%. Residual volume 2.96 60.3%. Does anyone know if this is just a bit low so his fatigue and other day to day issues are unlikely to be the cause of his problems and it is just the auto immune disease which is the problem. Any insights would be welcome.🍰

I thought I’d add an emojie but there are so many to choose from. Last time I looked there was only 5. Liked the look of the cake, random but why not. I think I need a lesson in emojies

[Damon1864 Volunteer]

Hi and welcome, I can't answer your questions but I'm sure someone on here may be able to help. Have you asked your husband's GP or Nurse to explain these to you, I'm sure they would help put your mind at ease it's worth asking. Have a great day and please keep posting take care of yourself and your husband😊 Bernadette xx

[Letitgo in reply to Damon1864]

Hi Bernadette. We saw the GP yesterday. It was him who gave us a copy of the Consultant letter which had the results on. GP says he understands fev results but not the oxygen transfer tests. Consultant wasn’t forthcoming. Just said they were low. The Rheumatoid Consultant might tell us if the lung problem is really irrelevant. I guess they must be as Respiratory Consultant didn’t seem concerned. Maybe controlling auto immune disease will fix all of his problems. Here’s hoping. Thanks for replying. Hope you and yours are ok x x

[Foxy79]

Hi I'm foxy79 I'm very young still but I have serve copd broncechtisis respiratory type 2 asthma emphysema.constent pseudomnas for last 3 years know I don't want to scare you as every immune system is different. My health issues related from 09. Some past Tuberculosis to me and I had astma my oxygen level dropped. I'm much better know but damages where done to lungs scared me for life and with streiods perdiesoline didn't help weight gain was soo much made me more breathless know it's been few months somehow I'm on 10mg from 70mg can walk about do everything only few times my oxygen is low regardless bit I feel good I'm on oxygen nebulizer and bipeb machine everyday gudgely reducing but with hubby could be anything is well iron vatamin best to get full blood test to be sure may be low stage astma. I'm sorry if I have offended you or scared you intention was to help take care hope things get better soon

[Letitgo in reply to Foxy79]

Hi. I appreciate the reply. Not offended at all. He’s been ill for so long it’s hard to imagine he could be absolutely fine. We just have no clue what to expect so cannot adapt sensibly, jobs, finances etc. He has had lots of blood tests. Just auto immune ones positive and the Nsip on ct of course. Hubby is on same steroid as you. So far he’s needed the weight gain he’s lost so much and he wasn’t big to start with. Take care x x

[Foxy79 in reply to Letitgo]

Hi it could be he needs a mri scan full blood test or one them blood gas taken from artitey vein to find everything cause it's from your heart. It's hard to reduce the streiod and sèe the difference but take it slowly and watch him his progress hopefully would improve. Hope it goes well for you

[Happerstad]

I can't help but am interested in responses. I also have low/poor oxygen transfer and am Coeliac (another auto immune illness). I have Emphysema, also had two minor heart attacks. Was sent to the Brompton by my local consultant with a view to a possible lung volume reduction, but after tests the consultant there believes it would be of no benefit band that this low oxy transfer is the thing causing most issues. I get fatigued really easily, with few 'good' days where I feel I have any energy. Also can get really breathless, sometimes just sitting down or doing things that require little effort. It's massively frustrating and whilst the consultant has tried to explain it, I don't fully understand. 🤔

[Bham-Mo]

Hi Letitgo

CTD-ILD is an umbrella for many different type of Autoimmune conditions. The Rheumatologist will be able to determine the exact one. What is basically happening in the lungs is that the autoimmune response is causing inflammation that fills the lungs. This reduces the gas transfer. Depending on what it is, there are several immunosuppressants that they can use can also pre-cautionary antibiotics that can clear up the inflammation. Also some of the Rheumatic conditions can cause fatigue as well. There are so many different types it’s no point searching for them. I have found the best thing to do is stay healthy diet wise, do some exercise, and found breathing exercises help. And most of all stay positive.

All the best with the doctors!

[Sooki]

I have idiopathic Pulmonary Fibrosis wich is an ILD disease my TLCO is at 25% ,I am on oxygen but still get about everywhere,maybe you may need ambulatory oxygen,if you have an ILD i wo7ld expect you to be referred to a specialist centre.