Difficulty walking long distances

[puddy68]

Hi Everyone, I'm so sorry to bother you all again. I have COPD, Pulmonary Hypertension, Asthma and scarring of the lungs due to sarcoidosis. In July last year I had a heart ultrasound done [which indicated mild pulmonary hypertension] and a spirometry breathing test which indicated moderate COPD. Since then I have had pneumonia and Covid, and I feel I am struggling more to climb stairs/hills, and walk for long distances - I get more out of breath than I did this time last year, I think. I am on Trimbow inhaler twice a day - I see the respiratory specialist in May. I was just wondering if oral medications have made a significant difference to anyone with similar conditions, and if their breathing has improved? Thank you so much.

[Caspiana]

Hi Puddy. May I ask what kind of oral medications you mean? Is the only medication you are taking now your inhaler? Some medication for example, corticosteroids like prednisone or prednisolone for short periods during flare-ups can ease inflammation. Usually they are prescribed for short term use only but some people take them daily, including myself. Bronchodilators can help relax muscles in the bronchial tubes. I don't take these so I can't really talk much about it. Carbocisteine helps to loosen mucus making it easier to clear the chest. Some people also take antibiotics to reduce exacerbations. I have taken these for a number of years. I think medication has helped me a lot but I have also tried to be cautious especially in crowds. I wear a mask in the train and bus and the hospital, anywhere with many people around. I carry hand sanitizer and wash my hands often. Unfortunately for us, each infection has the potential to damage the lungs further so as much as possible prevention is important.

I don't know if pulmonary rehab is available in your area. I think that can be very helpful. You can also find free videos on YouTube. Pursed lipped breathing helped me a lot when struggling to breathe. Importantly, take rests when you walk and of course good sleep really helps. I hope this gives you some ideas of what medication might help you.

Sending very best wishes.

Cas 🌷

[puddy68 in reply to Caspiana]

Thanks so much, Cas. The only medication I am on is my Trimbow inhaler. I don't have any problems with mucous. I also have ventilin if/when needed. I was just wondering if there is anything else that can be prescribed [besides steroids, as I have a liver condition and cannot take these long term] that would help my breathing. I'm fine at rest, but can't seem to get enough oxygen in when walking long distances or up stairs. Thanks so much.

[Loopylorre in reply to puddy68]

Hi puddy, maybe get your saturation levels tested, I get out of breath & my saturation levels drop when walking/ moving around & I had ambulatory oxygen prescribed for it, doesn’t help with the breathing but does help with my saturation levels, might be worth getting it checked, ask your nurse in May when you see her, good luck, there isn’t a lot to do for breathlessness, all I can advise is keep moving as much as you can 😊🌸💐🌷 x

[NieceByMarriage]

I had pneumonia last year (hospitalised) and it knocked me for six despite my very good fitness prior. Recovery is long and slow and mine has mainly been achieved by exercise. I will never be quite back to where I was before the pneumonia, though. My progress has been achieved by resting enough and responding to fatigue as it arises but also by pushing myself enough when appropriate. I suggest you have a look for the book by Noah Greenspan (I think it is called Ultimate Pulmonary Wellness). He is a respiratory physiotherapist who does rehabilitation and the book is really informative. I also second the suggestions to do a pulmonary rehabilitation program if one is available in your area.

[Troilus]

Hi puddy. You have certainly been through the mill of late. Have you seen your doctor about your current problems? I have asthma and got covid last May. It played havoc with my breathing - coughing, but not being able to clear my chest, getting out of breath very easily etc. I had two courses of antibiotics and two courses of prednisone. They helped but it took quite sometime to get back to my normal self. I mentioned this to my consultant and he said that it was common for people with asthma to take longer to get back to normal.

Maybe it is your asthma that is causing you the problems you are experiencing at the moment- if it is it can be treated. If not, then maybe your dr can suggest something else that may help- it’s certainly worth asking.

[Alberta56]

At the recent European Lung Foundation conference, one of the speakers was emphasising the importance of upper body exercise, as well as exercise to keep the lower body muscles trim. She suggested things like bicep curls and upright rowing to work the muscles around the chest. I don't know if that would help you. obviously you would need to start very gently.

[Patk1 in reply to Alberta56]

Thanx for this Chris.have they released video yet x

[Alberta56 in reply to Patk1]

I don't think they have, Pat. I'll post when I hear something.

[Patk1 in reply to Alberta56]

Thanku xxx

[janedivney in reply to Patk1]

ALUK have got some videos on YouTube x

[garshe]

What medication are you on for Pulmonary Hypertension? xx.Sheila

[puddy68 in reply to garshe]

Hi Garshe - I'm not on any medication at all, except for my Trimbow Inhaler.

[garshe in reply to puddy68]

I have COPD and PULMONARY HYPERTENSION. When diagnosed with Pulmonary Hypertension I was immediately put on oxygen 24/7 .this is very intrusive and has affected my life immensely. xx.Sheila. I wish you well .

[puddy68 in reply to garshe]

Thank you so much for your reply, Sheila. I'm so sorry for your plight. I wish you well, too. God Bless.

[garshe in reply to puddy68]

💞💞💞💞xxSheila

[PaulineHM]

Hello,

Sounds like you are doing really well and yes I appreciate that progress is slow and frustrating at times isn’t it?

Have you been referred for Pulmonary Rehab at all ? If not please do so via GP. Pulmonary Rehab is a programme of exercise and education for people with lung conditions and makes a heck of good difference. As Alberta says keeping muscles in good shape is helpful and I would add the muscles of the upper leg as well.

There may a local general exercise class from your local authority to attend again your GP should know.

There are exercises on the ALUK website as well.

Keep moving !!

Go well

Pauline