Advice on prevention of pneumonia having recently lost our father (wegeners)

[Chelle24-09]

Hi all. We lost our father in October and I'm basically looking for some information and knowledge. We feel with better care he would still be here. He had gone to see his consultant for results of blood test and a test which they check your lungs(not sure what its called)These results were given over 14days after they were taken and came back normal, no signs of infection. On the day of the results Dad took a hospital bag to his appointment with his consultant because he was struggling to breath, expecting to be kept in. Because his results were clear and his lung test was good only showing scarring from previous minor infections etc they sent him home with steroids to help his breathing. Three days later his breathing became so bad he couldn't even dress himself so was taken to to a+e as advised by consultant and was admitted. Basically he was in hospital 2 weeks fighting with everything he had. The nurses said they did everything they could, which no doubt they did. It's the previous care, why wasn't he admitted on the Thursday, what could they have done to prevent pneumonia in the first place to someone with wengers? Dad had gone through the usual treatment, plasma exchange, steroids, antibiotics, numerous medication and ritux. He had been diagnosed 5 years ago but in remission 10/12 months. We want to arrange to talk with his consultant to try and get some closure. Any advice and knowledge on what's the protocol to prevent pneumonia would be greatly appreciated, as we have since found out there's such a thing as a pneumonia vacination which he was never even offered. Best wishes and thanks in advance x

[Chelle24-09]

Can i please add dad was not on any medication, his consultant and stopped all meds. Thanks again

[Hidden]

Hi Chelle,

So sorry to hear about your father and I think it's a good idea to speak to his Consultant for some sort of closure.

The pneumonia vaccine is usually given by the GP and is a one off ( although there is some evidence that the immunosupressed should maybe have it 5 yrly ). Unfortunately it only protects against pneumococcal pneumonia, there are many different causative organisms for pneumonia including bacteria, viruses, fungi etc.

Patients who are first diagnosed and on immunosuppressive treatment are usually given prophylactic antibiotics to prevent another type of pneumonia called PCP but as your father wasn't on treatment they wouldn't be required.

Please feel free to either phone or e mail the VUK helpline if you would like to discuss this further. Questions you might want to ask are was your father still in remission, are they sure he had pneumonia and did they previous treatment leave him immunocompromised?

Best wishes

Lynn

[Hidden in reply to Hidden]

vasculitis.org.uk/helpline

[Chelle24-09 in reply to Hidden]

Thank you so much for your reply Lynn. Yes he was still in remission, we are under the impression thats why all medication was stopped. We can't understand why when they could see his breathing was so bad on the Thursday they sent him home with steroids to become worse. You'd think if they had taken him in then that's 3 or 4 days of sooner treatment which may have had a better chance as he just got so much worse by the time he was admitted. He never had the pneumonia vaccination, never got offered it. I've also read that with some patients co-trimoxazole is given long term as it gives some kind of protection against pneumonia? He seemed to have a lot of problems after the antibiotic was stopped, gout, skin rashes and other complaints. Thanks again

[Hidden in reply to Chelle24-09]

The co trimaxozole protects against a specific type of pneumonia called Pneumocystis jirovecii, which is an opportunistic infection found in the immunocompromised, not the general population.

If you feel your Dad should have been admitted at the Hospital appt then it's important to get a copy of his notes and see what was said there. Did they listen to his chest and check his pulse and oxygen saturation etc?

Patients condition can change markedly in a few days and deterioration can be difficult to predict, what you need to discover is if there were any " red flag " features at his appt and was he assessed properly.

It will be in his GP notes whether he had the pneumonia injection or not so worthwhile checking, it's usually given at the same time as they flu jag and it may have been quite a few years ago. Certainly it would be unusual to have been given Rituximab and not be given the pneumococcal vaccine.

Please do phone if you feel it will be helpful. If you have unanswered questions then well worth getting a copy of your Dad's medical notes.

[Omil04]

Hi so sorry regarding the loss of your father. Regarding pneumonia injection I asked for this at my GP how ever , due to what Meds I was taking , plus what the infection going on in my body, was told that I could not have it. Regards L

[tiachibird]

I have MPO diagnosed last Dec. In April I had a cough which turned into Pneumonia. Consultant gave me 3 days anti biotics and sent me home to recover, then return to consultant on the fourth day for more anti biotics. I was not admitted to hospital because the consultant thought there were more germs on a ward than there would be at home. I agreed whole heartedly, and recovered nicely. It is now Dec and I have been struggling with a chest infection for 4 weeks. I rang GP during the first week and asked for anti biotics, I was given enough for 3 days, went back to GP on 4th day struggling to breathe and feeling light headed. I was sent to hospital were I was told my oxygen levels had dropped and my heart was struggling. I was put on a drip and bloods were taken etc. After 3 hours the levels were back up and I was sent home with increase in preds and a week supply of Beta blockers. Went back this week for check up. I am now on beta blocker on alternate days for a week and preds are back down to 7.5mg. I still have horrible cough, and if I deteriorate I will ring the ward direct for advice.

[mejiagabriela]

sorry about your lose Chelle!!

[Chelle24-09]

Thank you so much. It's so hard, he was so fit and healthy looking and was doing well with regards to the vasculitus and then something else came and took him.

[sorefeetsoldier in reply to Chelle24-09]

Hi Chelle

I have just read your posts and i am sorry you lost your Father I know its a Difficult time for you.

How many infusions of Retuximab did your Dad recieve and how long ago?

Regards

S