I Posted last month regarding my husband's pneumonia and pseudomonas diagnosis - well, he now has bronchiectasis too,according to the consultant. After 32 days in hospital 14 on iv merepenem, he is now back home as they do not know what else to do with him, even though he is still unwell. I thought bronchiectasis could only be diagnosed with a ct scan, which he has not had for this condition ( he has had several for lvrs valves which did not show anything linked or it was not mentioned) . The BLF nurse is rather pessimistic re his future prognosis - can anyone give me a bit of hope or how best to help him. At the moment he really is limited as to exercise and appetite but I am giving him probiotic drinks and supplements. Thanks very much.
Pseudomonas and bronchiectasis - Lung Conditions C...
Pseudomonas and bronchiectasis
Bossidan,I've been written off a few times but made a life for myself,it's different and it's slow hard work but it's wonderful life and I'm so glad to be part of it,I was only 45 when hospital advised my family to let nature take its course and for them not to intervene but thankfully I'd had the chat just a few months earlier with my sister that I'd always want them to try as the year before that I'd been on life support and had managed to come off it,but at 45 things were really bad terrible pneumonia and organs failing,but hospital would not incubate as my heart wasn't strong enough but with massive amounts of oxygen and NIV I came out of four day coma and made a miraculous recovery as the hospital called it.
I've since lived alone for the first time in my life,I've become a fairly independent woman with the help now of carers but that's due to a bit of bad luck catching a persistent bug in my lungs that's travelled to my kidneys and now I tire very easily..
I need to plan going out my route that I'm walking as I can't do hills or inclines ,but it's amazing how you can use lifts in some stores to avoid hills on the street,I need to know where I can sit to rest and I always try to use the same stores to shop in as the staff know me and as example just recently in marks and spencer I suddenly started to feel very faint ,the staff noticed immediately got me to a seat and I realised there was a problem with my liquid oxygen so a staff member ran across to Boots where I always have a script for tanked oxygen and the pharmacist came over with it,being alone makes things more difficult. I think your husband is going to be so blessed to have you by his side,just try to be understanding that things will be very tiring and he'll need to space activities so he has time to recover,I am extremely forgetful and that made my husband so angry but no one is forgetful on purpose. Just love him and understand that he might not be able to do the things you both love as often but that doesn't mean he doesn't want to do them,go out into the garden or town,visit relatives have holidays most of all have lots of fun and love ,but just understand it will take a bit longer to do these things and he may need to take a rest or two but that definitely doesn't mean he won't want to do them.
He may well be scared of everything he's finding out too,do not Google,according to that I had only 6 months to live 6 years ago,and be prepared he might feel very low in his mood,as for food I've found that eating food with as little aroma as possible helps when I'm feeling so nauseous,salads,custard,rice pudding,rice and cold cuts of meat,just buttered lightly bread,no hot buttered toast as the smell of the butter makes me very sick,.
Most important is to get information,there is so much I don't know that I've been finding out from this site,but here in nireland it is a case of nurse knows best and patient isn't allowed to know anything ,if I want to see my notes I will have to seek permission and pay a high fee,we are just kept in the dark most of what I know are from 2 nurses and a wonderful GP that I changed to some years back but it's almost impossible to get an appointment with her unless I wait 3 months,with no government here every service is going downhill,with no one to release funds to different departments,but I'm going off the point as usual,my wandering foggy brain.
Try try try to see the funny side and for your husband to see it to for laughter,even a smile is the best of medicines that I have found,good luck for the future,it may be different but it might just have to be slowed down for your husband to stay by your side,as that's all we want really in life to have someone special by our side. Stay happy and remember to laugh together .😊😊🌻🌻🌻
What a wonderful reply. I simply could not offer anything further.
Regards Rib
Hi Sticher48, you sound an amazingly strong woman - thank you so much for taking the time to give me some hope!! I am between a rock and a hard place really - having watched my husband decline over the past 7 years since being diagnosed with COPD. We have not been out together for almost two years apart from hospital visits - partly fuelled by fear of catching something and the effort involved in getting dressed to go out. I am unsure whether to force him to do things for himself or do almost everything, as I am at the moment. What I don't understand is that during his last week in hospital (whilst on IV antibiotics) he could walk to the end of the corridor (albeit slowly) - now he struggles to go to the bathroom just metres from our lounge.
Hi Bossidan, could you not contact the consultant's secretary and ask them for a ct scan to confirm the diagnosis and ask what treatment plan they have for him, its not acceptable to be left with no treatment whatever the condition. I take mucodyn for thinning out the mucus, which causes a cough (its important to clear the mucus everyday if he has bronchiectasis, look up on youtube how to do the exercises to huff this out of his lungs). I have an inhaler Seretide (not the powdered one) to help with the breathing and because I have problems with my sinus's I use a nasal spray Nasonex. If your hubby has lost his appetite try banana milkshakes or ask the chemist for those food drinks. I'm afraid you have to keep pushing the gp/consultant, I do hope you get some help soon. Irene x
Hi, thank you for your reply. I have spoken to the consultant's secretary to raise various issues (discharge letter was a work of fiction!!!) and she is supposedly getting back to me. I am amazed that they can just send him home with the diagnosis of this additional condition and absolutely nothing else!!
When first diagnosed my gp told me they had missed seeing bronchietasis and only told me months later. I think it depends on who is reading the ct scan. I think littlepom is right by saying that you need a specialist as most gp/consultants just dont know enough about it. At least my consultant sent me to see the physio nurse who explained it in detail and helped me with an acapella (gadget to blow in to loosen the mucus). Good luck with everything and I hope your hubby feels better soon. Irene x
Oh! I think soup is a great idea too x
Hi Bossidan. Nobody could possibly have accurately diagnosed your husband as having bronchiectasis without a ct scan. Pseudomonas is not a condition. It is a bacteria which gets into the body of vulnerable people or the lungs of those with conditions such as bronchiectasis or copd.
Your husband needs a proper diagnosis by a bronchiectasis specialist. He will then be under their care and they will write to his GP and to him, informing them of the ongoing treatment.There are many different ways of managing this condition including self management which can make the quality of life much better. I am afraid that most GPs and many general respiratory consultants know very little about it.
Look on the internet for a bronch specialist in your area. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer and do not be put off by comments such as ‘the person he has seen has enough experience’. They obviously do not because his condition is not being managed properly.
I’m afraid that we have to be very vociferous in getting the treatment that we need.
Good luck. Your husband is lucky to have you.
Hi thanks, littlepom. I may not have used the most appropriate title to my post linking the two issues. I realise that pseudomonas is a nasty bacteria but my point was that, as far as I am aware,he has never had it before or, rather, it has never been mentioned in his medical history. Similarly, neither has bronchiectasis. His discharge notes specifically said CXR showed bilateral bronchiectasis in lower lobes!!! Again, I have mentioned this to the consultant's secretary - we shall see!!
Yes pseudomonas is a little friend that adopts us bronchs as time goes on. I have been living with it since 1986. It is perfectly possible to be well and live a normal life with it with the correct treatment and management. I get very cross with these consultants who put things in letters which they are too arrogant to spend time explaining to patients. It may be that he has seen so much bronch that it is obvious from the xray but even my specialist, who is co chairman of the committee which wrote the 2018 guidelines for the treatment of bronch, has a ct scan done every so often. And I have had bronch for over 65 years. You need to be demanding answers as to the way forward to improve your husband’s quality of life. daily self administered physio, which kind of ongoing antibiotic therapy etc. I don’t know if he is also living with copd. Bronch can develop alongside copd which complicates matters but it is still possible to manage it. Good luck. You are doing everything right.
Yes, he has had a COPD diagnosis for 7 years but this is the first mention of brochiectasis. He had a CT scan late last year - you would think that if it was bad enough to show on a chest xray it would have been diagnosed at that scan? On discharge from hospital he was given no advice how to deal with this condition or any additional medication to control the pseudomonas? I gather from other posts on this subject most are given ciproflaxin or gentomicin (?sp) orally. He already takes azithromicin daily on the advice of the consultant in charge of his valve trial, which failed, unfortunately. He was due to have reduction surgery but came down with an infection the day before and the rest, as they say, is history. Everything has gone downhill since and we don't know if surgery will ever happen now.
I am not sure if he has a regular consultant for his copd or if the opinions of these doctors have come about as a result of being hospitalised. Unfortunately, general respiratory consultants who deal with copd don’t have knowlege or experience of bronchiectasis.
A bronchiectasis specialist will have begun as a general respiratory consultant and the undergone further training and experience in bronch. Quite frankly your husband’s treatment is a shambles. There is no point in you trying to figure out and get drugs for your husband. It is a VERY complex situation. I really do suggest that you wipe the slate screen and get him under the care of a proper bronchiectasis specialist and their team of physios, etc who will decide on the treatment programme and teach him how to manage it himself.
Very importantly. What you are doing for your husband is exceptional but in the end he really will have to take responsibility for the personal management of it. Many people with a good carer resist this but it is very important that they are encouraged to do it. As he does what he needs to to manage it, he will see positive results in his health and feeling of well being. This being a personal achievement will further encourage him to carry on.
I live alone, I had a husband who was always in denial that I had bronch in spite of nebulisers in the house, abs in the kitchen and me doing daily physio - oh and the exacerbations when I wouldn’t get as much as a cup of tea! I am still here, giving it and everybody else plenty because of my own efforts.
Thank you again for sharing your knowledge. I will try to absorb it all and then react appropriately. Xx
Just a thought about eating. I have never had much interest in food and when I am poorly it drops to nothing. Those drinks make me feel sick because I cannot take anything sweet when I am full of mucus. So I virtually live on soup. You can have great fun finding recipes that you both like and use ingredients which will nourish him. Hopefully if he likes the soup he will take more of it than he does when struggling to get up enthusiasm to eat solid food.
Can’t add much but just want to say that a specialist consultant would be a good idea. The fact that he was better with the Meropenem and gradually got worse afterwards indicates that he is colonised with pseudomonas and needs ongoing nebulized antibiotics. These can work really well, in conjunction with good lung clearance. Unfortunately you will have to work hard to get the right information and care. Sputum clearance is really important so try your best to get him seen by the physiotherapist. Lots of advice on here about medication and devices to help him with this.
Hi Bossidan so nice to meet you, as others have said love and laughter are one of the best medicines your husband could have, a with a loving and supportive lady like you by his side I'm sure he will get lots of it. He can still do things but at a slower pace and may well need to rest between things, and maybe there are things he may no longer be able to do. When that happens just let him know it's fine and it doesn't matter, he is still and always will be the man you love. He is really lucky to have such a strong and loving lady by his side. I hope your husband improves soon and you have lots of fun ,love and happy times together. Please let us know how you both are getting on. Take care and have a lovely weekend.😊 Bernadette xx
Hi Bernadette, this horrid disease has completely changed our relationship to carer and cared for. I would never give up on him but I have my selfish moments when I want to be doing all the things my friends do with their partners ... going for walks,for a meal, even a couple of days away. He won't even contemplate getting in the car at the moment unless he has a medical appointment!! I then feel guilty thinking such thoughts when at least I can breath normally - something we "healthy " beings take for granted. Thank you for your thoughts xx
It's ok to be selfish now again, I'm sure your husband has his moments. Have you been in contact with adult social services they have a one off yearly payment for carers to spend how they wish, my husband gets it every year. It certainly helps him get some me time or we use it for days out. Hope this helps you 😊 Bernadette xx
Oh that is interesting - not heard of it but will look into it. Thank you.
Hi, Just want to give some words of encouragement, since I am not an expert as many on this forum. You found a good place for support and wisdom. I agree the diagnosis needs CT confirmation and care from a Bronch specialist.
I was hospitalized for a week with a lung abscess, the only they could find after lots of testing was Pseudomonas. The antibiotics made me and my legs very weak for quite some time, but it can get better with proper care. I would think physio for lungs and strengthening is indicated. There are drugs for Pseudomonas. I think they should also check your immune system- Ig levels, etc. Some people with an immune deficiency are diagnosed only later in life. Check blood Vitamin D levels, often low in people like us.
Don't give up, things can, and hopefully, will be better.
I have had over ten years of constant infections and in that time have been hospitalised for approx two years in total. I have been colonised with pseudo but have been free of infection for five years so am not considered colonised now. I have a "signature" of "However long the night, the dawn will break", and so it transpired with me. It is very unusual to be diagnosed with bronchiectasis without a CT scan but having had pseudo colonisation I think that it is correct to assume Bronchiectasis. Your husband should be under the care of a bronchiectasis specialised respiratory doctor at a centre of excellence, in my opinion general hospitals are simply not up to the job. He should have the diagnosis confirmed and undergo many tests to attempt to find an underlying causal disease. Many sufferers never find that answer and are considered "Idiopathic" Bronchiectasis is the result of damage to your lungs and you should not fear being diagnosed with it as with that knowledge you can research best practice in self management of the damage. Of prime importance 8is chest clearance techniques and staying as active as possible. I found that at the end of IV treatment I felt worse than before the infection, I would that this quite common. Your body has been insulted by the infection and then with the meds,ABX,Steroids and strenuous physio your body takes a real beating. After the treatment rest is essential to allow your own defences to rec over. Unfortunately ABX treatment, especially the potent and often dual ABX kills the good bacteria along with the bad. Add high steroid doses and it is no wonder we feel bad. I wish your husband all the best and hope that by now he feels better.
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