Breathing getting worse

Hi. I was diagnosed with COPD 10 years ago - simply because I was an ex-smoker. Last July I was told I didn't have copd but obliterative Bronchiolitis (Arthritis of the lungs) I have been getting really fast heart beat all the time and have had treatment to reduce inflammation on the lungs. Although I thought I had been getting better. I am still very very breathless and cannot even walk to the toilet without getting out of breath. I was wondering if anyone would be able to tell me if maybe the fast heartbeat is causing the breathlessness and not the lung condition. My heart beat is never less than 100 and as fast as 134. Any advice?

[Caspiana]

Hello Hidden .

Welcome to the forum. I also have Bronchiolitis Obliterans (diagnosed almost four years ago) a manifestation of Rheumatoid Arthritis. Are you on oxygen? If not, have you been evaluated for oxygen therapy? How low does you O2 drop on exertion, and how quickly? How quickly do you recover?

When you struggle to breathe, your heart has to work harder to make up for your compromised lungs. This overload on your heart is not good and needs to be addressed.

Katinka46 also has this disease and probably would be able to give you good advice.

Hoping to hear more about your situation soon.

Warm wishes,

Cas xx 🍀🌱

[Hidden in reply to Caspiana]

Hi. It's nice to speak with someone who has this. No I am not on oxygen at home Sats are quite stable around 88-91 so don't need it at present unless of course get the dreaded infection which is too often taking all these immunosuppressants. But like I said I am worried about my heart beating so fast. Even when just waking up and in a relaxed state itygoing at about 99-105. Maybe I should go to GP. I was just wondering if a fast heartbeat could actually cause the breathlessness and wondered if anyone had any idea? Thanks for replying

[Caspiana in reply to Hidden]

Hello Christine.

I am sorry to be nosey, but when you say your sats are between 88 to 91 is that on exertion? Or when you are at rest?

I would try to see a pulmonary specialist as well as your gp. Lung conditions are very complex and gps are not equipped to handle them.

I am not sure if your fast heart rate causes your breathlessness. I know I was told that because of my poor lung function (30%) my heart is under extra pressure and will work harder on that account.

Have you had a lung function test or a six minute walk test? I am curious as to how they made the diagnosis. And do you have an autoimmune disease?

I'm sorry for so many questions. It's rare to meet another Bronchiolitis Obliterans patient so, I have all these queries. Please forgive the intrusion and feel free not to answer if it makes you uncomfortable.

I know it's hard. Today it is very warm and a bit humid, and breathing has been particularly difficult. I have to rest after everything.

Sending a warm hug.

Cas xx 🙋🐕

[Hidden in reply to Caspiana]

Sats are that at rest I don't exercise as cannot breathe. If breathless sats go to about 83. I think my last lung function was 50%. I haven't had a 6 minute walk test but as already mentioned had lung function. I have a few autoimmune deseases Rhuematoid arthritis, sjergroens syndrome and collagenous colitis. Have had rituximab infusion few weeks ago and living in hopes now that this 'miracle' treatment is going to work. They say between 2-16 weeks it is now 7 weeks and is getting a little better, more good days now than I used to have so I suppose some improvement. Nice to speak with you

[Caspiana in reply to Hidden]

I have RA, Sjogren's and Raynaud's. I think your SATs are really low and this needs to be brought up with your doctors. They can test you and if necessary, put you on oxygen therapy. This will help you in your day to day life.

I am on Methotrexate and Remicade (infliximab) for my RA and I truly believe Remicade has helped keep my RA and hence my Bronchiolitis Obliterans under some control.

I do understand the struggle of having these "tied together" illnesses. It does take time for TNF-blockers to work. Please hang in there Christine and come here often if you feel up to it.

I really look forward to an update, if you'd like to.

Sending best wishes, and lovely to speak with you too.

Cas xx 🍀

[Hidden in reply to Caspiana]

I am very reluctant to have oxygen at home because I am worried this will either substantially increase my travel insurance or stop me being covered for the lung condition at all. Do you have any experience with this?

Chris x

[Caspiana in reply to Hidden]

Hello Chris. 😊

To be totally honest, I'd be more worried that I'm starving my vital organs of oxygen rather than anything else. If you are in fact lacking oxygen, (hypoxia) this is a serious concern.

The heart compensates for the lack of oxygen by pumping more blood per minute to try and deliver enough oxygen to the tissues. This could explain your rapid heart beat. Self preservation if you will. Unfortunately, the heart working overtime will eventually wear it down.

I can understand being concerned about many things when it comes to using oxygen. I had concerns too initially. Now when I travel , like many lung patients, I need the doctor's aporoval. And I need oxygen on board the plane. It is costly, and time consuming, but its necessary. Having said all this, I am not a doctor, and you will need to see a pulmonary specialist and get a professional opinion.

Did the doctor speak to you in depth about this illness?

Take good care and sorry for the monologue.

Cas xx 🌷

[Johnem in reply to Hidden]

It would be a good idea see your GP and have him refer you to a respiratory specialist to get it checked over. It is possible that you are also desaturating whilst sleeping and a simple overnight test at your home with their device is in order.

[Hidden in reply to Johnem]

I am seeing resp specialist but tgey have never mentioned oxygen at home although every time I am admitted they always ask if I do have oxygen at home

Thanks for being interested

Chris

[Dedalus]

I am sorry I can't help with your question, but may I ask what treatment you were given for inflammation please Christine. Thank you x

[Hidden in reply to Dedalus]

I am in a few immune suppressants to hopefully stop the inflammation but at present and often put on prednisolone. Hope this helpz

[Dedalus in reply to Hidden]

Thank you for taking the time to reply Christine and I hope you get the answer(s) you need xx

[Katinka46]

Morning Christine

I am glad to see that Caspiana has replied to you. I too have OB. It is a rare condition and you should be seen by a respiratory consultant, (or pulmonologist in the States). The raised heart rate should be investigated. Mine goes up on exercise but I have Chronic Thromboembolic disease and I think that contributes to both my breathlessness and tachycardia. Where are you? UK? How were you diagnosed? It is not easy to diagnose as the small airways do not show themselves on CT scans although there is indirect evidence on High resolution CT scan. I am not on oxygen, but my O2 sats are fine, with an occasional drop on extended exercise. Yours of 88-91% at rest seems a tad low but I am not a doctor. Have you been told what caused OB? There usually is a cause. Some of the auto-immune diseases cause it, as do toxic chemicals and gases.

Please keep in touch, we Zebras, (rare disease) need to stick together.

All the best

K

[Hidden in reply to Katinka46]

Hi. Katinka. I was diagnosed through ct scan quite obvious on the scan picture even I could see the problem. I have Rhuematoid arthritis, sjergreons syndrome, calagenous colitis. I cannot seem to do any excercise just walking to the loo leaves me gasping for breathe and very scared, I think that is the worst bit feeling that I just cannot get the oxygen into my lungs. This was picked up five years ago but never treated and they just continued to treat me with inhalers for copd. I am now being managed by a respiratory consultant and rheumatology/lung consultant together as well as my rheumatology consultant for the RA Yes I am in the UK by the way. Will have to try get doctors appointment maybe I'll get ine ine about 4 weeks or so. Where did you get 'Zebras' frim?

[Katinka46 in reply to Hidden]

I am glad that you are getting help from consultants, it sounds as if you are in safe hands. And the cause is obviously the RA.

The Zebra theme is because doctors are told when they are training that if they hear hooves they should think horses not zebras, i.e. eliminate the common diseases first before going into realms of fancy. Doctors are reluctant to consider rare diseases because they don't want to look like eager, naive, junior doctors in 'Holby City' jumping up and down and insisting that the patient has "Duckenburger's Syndrome" when it is a common cold. Doctors' refusal to entertain rare diseases is known as 'Zebra retreat.'

K x

[Hidden in reply to Katinka46]

Oh teally. Thanks for that it's very interesting but not good if you don't just have a 'common cold' Woyld I have actually been this bad had I been treated for this condition 10 years ago and not copd?

[Caspiana in reply to Katinka46]

I was also thinking your sats are a bit low Hidden . 🌷

[wheezyof]

Hello Christine, I'm an OB patient too. I was diagnosed with bronchiectasis first, was unresponsive to treatment, further test discovered the bronchiolitis obliterans. The ob caused me to be breathless on short journeys from room to room just as you describe.

I would follow the advice given to go back to your gp. Go armed with a list of your worries and questions. If your gp is likely to limit your time, book a double appointment.

If you have not had the following., ask about :-

referral to hospital

pulmonary rehab

your rapid heartbeat

lung function test.

details of local breathe easy groups

If you are worried about this ring BLF for help. They are brilliant

Please keep in touch with us and let us know how you get on xx

[Hidden in reply to wheezyof]

Have had most of the things you mention except pulmonary rehab but waiting for that. Didn't think to ring BLF about rapid heartbeat. It is just so difficult to get a doctor's appointment I tend to not even try then end up at A& E and admitted to hospital with yet another infection. I have recently had rituximab infusion which is supposed to be a 'miracle' drug so living in hopes on that one

[wheezyof]

Oh dear! I used to have problems getting appointments too. I refused to take no for an answer, ended up with telephone talks with the doctor. Eventually I complained to my gp who agreed that I needed an appointment and was not a time waster. I now get appointments when I call. I need less appointments now as I'm on anti-biotics 3 days a week and 3 inhalers, I have rescue meds at home too. I hope the rituximab works (I don't know that one). xx

[Hidden in reply to wheezyof]

Will try to sort out the gp appointment problem. It just gets so tedious I can't be bothered to even try. Rituximab is a monoclonal antibodies which target individual cells not everything. Apparently they have had some astounding results I am on antibiotics 3 times a week as well, and haven't seen doctor since last year so hopefully they're working to some extent. Thanks for replying.

[Offcut]

I have multi conditions with heart and lungs and my heart rate never goes much below 110 at rest and have been 150 for over a month but that was bought down with Intravenous Digoxin. It is very difficult as I have Restrictive lung disease and COPD but I also have Pulmonary Hypertension which will mean further investigations very soon to confirm or point my breathlessness to another issue/treatment?

From what I read here yours sats do seem low and am surprised you have not been offered Oxygen? I am often put on it in hospital when they have a play with my organs as my sats drop to around 80 or lower when flat but can be 95 when sitting and rested which my Docs seem to take as my norm?

I hope you get it all sorted soon.

Be Well

[Hidden in reply to Offcut]

Whoops I answered the wrong one. I do hope they get all your problems sorted and diagnosed soon good luck