Feeling lost

My husband diagnosed with fibrosis( not IPF) is in hospital(Brompton). Lung function is 48%. Was 60% 1,5 years ago. CT scans show only slightly increasing of fibrosis. They said its infection, but the mucus tests always were clear. His doctor treated him with antibiotics, no improvement, he is worse and worse every day. He was on 2 lts of oxygen 1 day in hospital and it was giving him sats 96, today he is on 5 lts which give him only 90-91 sats. He is walking on 15 lts of oxygen and his sats are 70th, so he walks 10 metres and stops to recover. Something is progressing very fast and he feels worse and worse. They changed antibiotics, no results. They r talking about discharging him with antibiotics for home use. I thought Brompton would help, but nothing good happens😢

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  • Am shocked there letting home with such unstable lung condition I would phone british lung foundation first thing of a morning.

    Have they said out about husbands heart or have you noticed any swelling arms hands feet.

    Seem's very unusual but infections can be quick .. I would ask his doctors what infection he as and tell them your not happy him being sent home so unstable.

    I thought if you have server infection the put you on Iv antibiotics BUT only thing I can think of is the might not want to make is infection worse in hospital.

  • Thank you, they checked heart its fine. They dont know what it is, tried to find out it from mucus which was clear 4 times. 3 weeks in hospital under antibiotics didint help, after 2 weeks rhey changed antibiotics, still no result.

  • So sorry for you both. How very difficult. And so disappointing about the RB. Does he have another local consultant who referred him there? And do you have faith in your GP? They can be key to getting help at home.

    Look after yourself and tell show things go

    K xxx

  • No Katinka46, we dont have consultant.

  • A hospital is only as good as their consultants. I too was not happy with my discharge from rb. Having read people comments many aren't.

  • So sorry for you and your husband, Mendy. Hope things improve quickly for you. It's a good suggestion by JeffAjaxSmith to phone the BLF helpline today.

  • Has he had a bronchoscopy? I was treated with all sorts of antibiotics but they did a lung wash and finally I got the right antibiotic. I too wasn't coughing anything up really. Once I got my antibiotic I felt better very quickly.

    I too can't believe they are considering letting him home with his SATS as they are. definitely contact your GP when home.

  • No MarieW-F, thank u for telling about bronchoscopy, i ll ask.

  • Good advice above Mendy - do call the BLF in the first instance. I hope you get a better result than just being sent home with AB. All best of luck. Please keep us updated. Sending hugs and best wishes.

  • Thank u Dedalus. Xx

  • Feeling Lost, I do so empathise with you concerns.My experience of Brompton has always been excellent.Regarding your own G.P, and Sputum samples being inconclusive!! Infection can be diffused.Two samples may be clear, the next can show infection, in the same day, depending what area of the Lung the sputum comes from.The variables with your Husbands condition can be so conflicting.I.E.:Varying Oxygen levels, it is a constant worry.I assume his Consultant has explained to you why the current variations.Has he bee.n receiving Intravenous Antibiotics and steroids to reduce any Inflammation.My Husbands Sats would drop to 67o/o on Oxygen when he walked, we'd rest and they,d climb up to 84o/o.Everyone is so unique.Exacerbation, cause a little more Lung incompetence, from which often there is no recovery.Do you have confidence in your Husbands Domiciliary care, you do need confidence in his care professionals.Don't be afraid to ask Questions, often Dr,s are limiting with information, if you don't ask specific questions, it's easy to feel as though your in a "Maze".To be well informed is a great help.Please ask his Consultant, "Why is my Husband experiencing these wide variations in his breathing, we can cope better with facts, than trying to make sense of a situation without the relevant facts.Thinking of you, and hoping you get some answers,😊

  • Thank you, yes he had intravenous antibiotics and steroids. They did about 5 sputum tests and mothing was found. One of the doctor said he doesnt know what it is. His doctor said he belives its infection. But if it is, i cant see improvement

  • My hubby diagnosed with copd a few months ago ,to add to his heart -blood and several other conditions. Anyway a few weeks ago he developed a cough, over several days it really was a wet cough with loads of clear mucus. Resp nurse at surgery gave him antibiotics...........result no good. Just got worse. The nurse did change his puffer to a steroid type to see if that would help. ....... There was no change and he coughed and coughed and coughed. It was quite scary watching him,. and times when I had to rush to help when he was choking.. Then after three weeks he started to recover. There were days when he was so tired he could hardly walk ,his sats were very low on any exercise.......After a little over a month later he is fine again , although gets a little tired, but at nearly 78 it's to be expected..........The only thing we could think was it was a viral infection.......without any bacterial infection hence the clear mucus.

    Jo.

  • Thank you Buzzytruk for reply,did the sats also come back to normal?

  • Hi............his sats improved as he did. ....they did not go up overnight.

    Jo.

  • No they surely can't discharge him. He needs more help and care not just sending home. That's terrible.

    Can you speak to anyone Mendy? Who is the specialist. Thinking of you and your dear husband. Xxxx

  • Thank you sassy59, we are private patients paid by insurance company from husbands work. I dont really know who to ask here. i am afraid i cant help him at home if they discharge, because if intravenous antibiotics didnt help, the tablets form will not do much xx

  • so sorry to hear this Mendy. Please ask them about doing the bronchoscopy as suggested above. Washings may show yet what the problem could be. Wishing you all the very bestxx

  • Thank you very much jenss. Will ask the doctor, when he comes to visit. Xx

  • I hope they find out the problem before they send him home.

    I don't know, if, it will help, but, this is what they have found is the cause for my rapid oxygen drop over the past couple of months.

    I have been in Southampton General for a few weeks now. I have IPF ( Idiopathic Pulmonary Fibrosis), in the past few months I have gone from 2 lpm ambulatory oxygen to 15 lpm ambulatory (not being enough) and 10 lpm resting. After many tests, including infection checks, CT scan (slight worse fibrosis than 1 year ago, but, does not explain change), ECG, Echocardiogram, Endoscopy, X-rays and a few blood donations, all proved to be negative. They carried out an Echocardiogram "bubble test". The bubble test showed that blood without oxygen was being sent back to the heart, to be sent around the body again, either: without going to the lungs; or, to the fibrosis part of the lung.

    They called this a "Shunt".

    I am now waiting on a Perfusion test, to isolate the location of the problem.

    I am not suggesting that your husband has the same problem, as the fibrosis condition and time frames are different, but, it may be worth asking the doctors the question, if, everything else has proved negative.

    Wishing you both well,

    Tenter

  • Thank you very much Tenter for information. I ll ask the consultant about it.

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