Diagnosis

[Letitgo]

Hubby has diagnosis of CTD-ILD. Relief to know what is going on and auto immune probably explains extreme fatigue more than the damaged lungs. Referral to rheumatologist and lots of steroids. Hoping he will be back to his old self very soon. Best wishes to everyone out there. Anyone who has CTD-ILD and has any tips or experience to share I’d love to hear from you.

[Ergendl]

Yes, it can help so much to have the diagnosis. Good luck for his future treatment. Hope he feels less fatigued soon.

[Izb1]

Hi Letitgo, I think autoimmune disease along with poor lung dunction does make you suffer from fatigue, never ending battle. Hopefully the rheumatologist can help you out there, once they have pinpointed the disease itself. I have bronchiectasis and I suffer from rheumatoid arthritis and the fatigue at times is terrible, as I dont take any medication for this I have a host of supplements to help me through. I do hope hubby gets back to normal soon x

[Oshgosh]

Hi,I too have a diagnosis of CTD-ILD .they think now lupus involved also.

I have done pulmonary brehab, I did CBT soon after diagnosis..it did help me sort out what was going on in my head. Did it online,so still have the transcripts ,so can re- read sessions- helpful.. when I told people about my diagnosis,I emphasised that I’m still me,but with adjustments! My other half jokes that I am on The Christmas party list at the GP/Chemist,

I plan around the fatigue.do what I have to do in the morning. Try to get out every day,even if it’s not exciting,perhaps go for a SHORT walk. Rest in afternoon..

We try to maintain social life, can’t go in to town to watch bands any more, but ther s still the Internet? Sorry to ramble on,best thing to do is stay positive

[Letitgo in reply to Oshgosh]

Hi Oshgosh. Hubby was told it’s either lupus or Sjogren’s or mixed CTD which I assume is both lupus and Sjogren’s. We asked if he could get back to work and was told it just depends on how he feels so not an absolute no. He was told his gas transfer was low but not how low. Still non the wiser as to what this means for his quality of life or work but hopeful rheumatoid consultant will be able to help. What meds were you put on and how much did they help? He hope he can get some kind of a life back with the meds as at mo he only goes to hospital or go. Not much of a life. Hope all will change soon. We are more positive now we do have a diagnosis and medication and help in the pipeline x

[Oshgosh]

Hi,your post as quite a surprise to me.

My diagnosis is CTD- NSIP with overlap plus some fibrosis.

Last week when I went to the ILD consultation,I saw the rheumatologist and the ILD Dr together. They told me that I have sjogrens or lupus? The rheumatologist said d they did not plan to do a lip biopsy,as treatment is the same for both conditions.i said I was grateful not to have to have a lip biopsy. They didn’t want to put me on Aziatropine yet,as my kidney bloods aren’t right.

So they are referring me to chest pain clinic,sleep apnoea clinic and to the kidney consultant.if my kidneys aren’t right There is another medication can be given.

So another wait.go back in July.

More bloods,presumably for different stuff.i don’t ask as much as I used to,sometimes don’t like / understand the answers.

We didn’t understand everything they said,but when the letter arrives,detailing. The consultation,this makes everything a bit clearer.

I was in hospital last November,when I went to the ILD unit,I thought they would be giving me the medication for my condition.

Still haven’t been prescribed it.it seems to be a long process, I think they have to be careful before they give you these drugs they are serious drugs.

Sorry to talk about myself,but your husband and myself seem to have much more n common.

Have he got a nebuliser? Helps you move sputum,hopefully preventing chest infections

An aCapella is good,it helps to thin the sputum,also a spacer to enable him to get more benefit from his inhalers.

I got spacer from Drs.other stuff through community team.

The British Lung Foundation website has a load of videos,which help showing how to get the best out of your devices.

Have you applied for

Blue badge

Pip or attendance allowance.

Citizens advice beareau are good,they give you loads of information and will have an appointment to help you in the forms.

I think if you ring up and request the forms from DWP, (if that’s wrong number.they will give you the correct number) and if your husband is awarded the benefit,it will be backdated to when you rung up.

Sorry if this all seems really negative,but you need to think ahead.

We had to find everything out for ourselves, it was hard , as we were struggling with the mpact of my diagnosis and fears for the future.

Sorry,I. Don’t know about the gas transfer.

Apologies for length of post,we ha e had to find everything out for ourselves. Take care of yourself and your husband

[Letitgo]

Hi Oshgosh. I really appreciate hearing from you. This whole situation is very stressful and we feel so in the dark and alone. It really helps hearing the stories of those who are living through similar struggles. We left thinking that he might be cured. Not sure whether that was right or not. We haven’t applied for benefits etc as we still hope he may get back to work. He already has a dropped foot and couldn’t get a blue badge for that. We have no idea what the realistic expectation is. Cons just said it depends on how he feels. I think he wanted hubby to hear from rheumatoid cons really as guess he feels respiratory problem is consequence of auto immune illness, not problem on its own. He did say he has to see how he responds to steroids. Hubby is lucky. His kidneys are fine. I’d love to get him to a sleep clinic. Sleep deprivation is probably what gets him down the most. Let’s hope you and my hubby get the right help soon to get an improved quality of life. Rest easy x

[Oshgosh in reply to Letitgo]

Hi,reading your post,I think I was lucky.

The first time I visited the ILD UNIT,after a very detailed history was taken . I was seen by the lead consultant.

His first words to me were “you wrong nt get better,but we may be able to relieve your symptoms. You may never get a precise diagnosis”

I don’t know what happened ,I didn’t get upset. Just asked loads of questions,which he answered. He told me loads of details about NSIP.

My GP said that she thought the way that he told me was a bit brutal.

I am grateful that I was told the truth from the beginning.

Re the blue badge,when I applied,I put CTD-NSIP IN the box.

I didn’t go into loads of detail,just put that it was a lung disease etc.

Put GP and ILD unit details. I then had a phone assessment.cant remember all the details,but the final question was if you vey the blue badge,what would be the most important benefit to you- shopping/socialising/ Hospital/ drs / Hospital visits.

I answered drs / hospital visits,this remains my priority.

I hear about a month later that I’d been granted a blue badge.does help,because it gives more room for manoeuvre when getting in and out of the car.

Apologies for the length of the post..

I agree with what you are saying about the stress,it’s very difficult to cope sometimes.

After we got my bad news ,we agreed that we would do the best we could with the diagnosis.we have been open with our friends about my diagnosis.its not been easy,but we manage to cope.somehow. The worst thing is the lack of information available.

Hope you and your husband are ok