[Anonymous]

Hello all
Any advice please. Henry has been on 3 courses of antibiotics and 2 courses of steroids during sept and oct due to chest infections. His chest is still not good and he is back at the docs on Monday. It seems that once the antibiotics finish it just comes back. It's really getting him down now. Any advice ?? On a more humours note yesterday I was in bed and still am with the winter vomiting bug and henry was at a loss with what to do !! Thank god my daughter was at home to help me!!
Take care
Sarah xx

[DaiCroParticipant]

Hi Sarah,

I assume its your GP that you have been seeing… if so you need yo get Henry to your Haematology team. They will be far more knowledgeable about how MM and chest infections go together… even if it means going in far a far more powerful anti-biotic through an IV drip. 😎

The longer this goes on without the proper treatment, the harder it will be to treat.:-(

Regards and best wishes.

Dai.

[Anonymous]

Hello dai
First time he rang the mac unit who told him to ring his gp!! I was so cross. Diagnosis over the phone ! So we have been going to the gp. Last time at the mac unit for pamidronate drip the doc didn't see him just a message from nurse said his bloods were ok and to provide a sputum sample which he did. So we went back to the gp for antibiotics. Gp said there was some rattling on his left side. He had a spirometry test on Wednesday too. We go back to the mac unit on the 14th and I will make a fuss if nothing is done about this. I used to work for a director of the NHS so I could make a nuisance of myself!! I just get the feeling that now he is in remission he is not their problem if he is unwell anyway we will see what the gp says on Monday. He has had antibiotic drip before at the hospital but that was about 4 months ago and his infection still came back. His chest X-ray was clear too. I will stop moaning now and get up now I have finally stopped being sick 🙁 hey ho
Love sarah xx

[eveParticipant]

Hi Sarah

I think Dai is right concerning the chest infections,when henry had the SCT he was given lots of tablets to stop different infections,I am not talking about normal antibiotics,in theory if Henry has been treated with antibiotics plus steroids,his chest should clear up,unless he has damage to his lungs.

You must trust your own feelings,:-S do not forget large doses of steroids mask infections,check his blood pressure .All the best Eve

[tomParticipant]

Hi Sarah and Henry

I have suffered lord knows how many chest infections since finding out I have got MM so its an MM thing but I have been told not to bother with the Dr to phone our ward up and ger advice and or pop in, the kept me once and put me on a drip and sent me home other times its just Anti B's with a come back if temp gets too high, we just need to keep a good eye on it.

You will find out like I have that we suffer with chest problems from now on in am afraid.

All the best and hope you are BOTH better soon

Love Tom "Onwards and Upwards" xxx

[adamsp41Participant]

Hi Sarah and Henry…I too like Tom unforunately suffer from infections 6 since Jan 2011 5 of them requiring hospitalisation and have been told at ALL times to contact my Haematology team 24/7 with any worries whatsoever as my consultant says it's their job to decide what is wrong me and so far have always been treat by them…just wonder if different hospitals have different procedures …the only time I went to my GP was when I had a cough for 4 months the Haematology team did all the tests…lungs… heart…scan.. etc and when they came back clear just said bob in and see your GP …he will have a better handle on treating coughs…fair enough for me..hope this helps..stay safe…Phil

[SueMParticipant]

Hi Sarah

Two thoughts ,he may need a longer course of antibiotics? the lungs have so many pockets that if some infected muck is left it will just regrow in a week or so.
Do his lungs feel tight at all or does he find it easy to cough up? I woud suggest askin about an atrovent inhaler as this would open his lung tubes and help him keep lungs clear and also steamy baths with a dash of eucolyptus oil may help.
Also drink lots to help thin the secretions.

I had to have an inhaler once to prevent chest infection and was told by immunologist we myelomics often need a full fortnight + of antibiotics and the full dose ie if the unmyelonics need 250mg for minor chest infections we need 500mg.

best wishes
Sue

[Anonymous]

Hello all

Henry has another chest infection and thats 5 now one after the other nearly. He spent most of day in the macmillan unit had all sorts of tests and came away with antibiotics again, consultant said they dont know what is causing it and that he is in remission so it should clear up!! I wasnt there but just get the feeling again that he is being fobbed off. He went to the GP in the afternoon and he thinks he could also have a prostate infection. he is really chesty today and in bed he has back ache too – his temperatuve is 37.6. Im at my witts end with this – doesnt anybody seem to care – he has had antibiotic after antibiotic and it keeps coming back. His haemoglobin and white cells are low but not low enough for treatment aned his creatanine is high (but always has been). I dont want to cause a fuss but im getting really upset and angry now.

love sarah xxxxxxxxxxxxxx

[tomParticipant]

Hi Sarah and Henry

Am sorry that Henry has another infection but I say its the same one that has not been cleared correctly try not and get upset but pleased do get angry we are not talking a "Normal Run of the Mill Body" here we are talking about a man that has got MM and if that means ruffling a few feathers then lets start the ruffling.

Not want to wish it upon you two lovely people but it might have to be a saty in hospital on IV drip to get this all clear. Dont wait Sarah go and get things moving, we dont want Henry to get weaker do we.

Love Tom "Onwards and upwards" xx

[jmsmythParticipant]

Hi Sarah and Henry

So sorry to hear that Henry is having such a rough ride. I cannot offer any advice but just thought that I would let you know that I'm thinking of you both and hope Henry starts to feel better soon.

Take care
Love Jean xx

[Anonymous]

Thank you all. Henry is in hospital now. High temp, bad chest and backache. He's been given I've antibiotic and had an X-ray. The consultant asked why this hadn't been sorted sooner ????? As giving him the same antibiotics is just not working!! The haematology registrar is going to get a few sharp words from me next time we are back at the mac unit. One time she didn't even see him just looked at his bloods and said he was fine hence we then left for the gp who gave him medication. I'm so cross that he has been treated like this. The hospital this afternoon was awful. Rude receptionist who said there was no record of his admission and no bed. I called the mac unit and it got sorted quickly. Meanwhile they told us to wait in packed waiting room. " are you mad" I felt like saying !! We waited in corridor for 20 mins and then bed in single room was sorted. I was getting so cross. Lets hope tomorrow is better or there will be trouble.

Night all
Love sarah xxxx

[jmsmythParticipant]

Sarah

I can understand your frustration and anger with unprofessional "professionals". I hope that they get Henry's infection sorted soon. Frank was so illl last week and was told "we don't want you here if you are infectious". We had no idea if he was or what was causing it. I hope tomorrow that there is a great improvement in Henry and that he is soon on his way to recovery and home

My best to you both
Love Jean xxx

[tomParticipant]

Hi Sarah and Henry

Well at long last, I hope they soon find out what Anti Biotic to use on Henry and get him well fast.

Its a bugger when you have to fight to get Proper treatment at a hospital ?

Love to you Both

Tom "Onwards and upwards" xxx

[KeithH17Participant]

Hi Sarah

Chest infections are a big problem with us MM patients. I myself have had countless infections and they really do take it out of you. Can I ask you is Henry Neutropenic? (neutrofils less than1.0). This would be the reason he has had so many infections in such a short space of time as I myself did. Oral antibiotics are of little use it needs to be a combination of both oral and infused antibiotics. Forget GP's total waste of space when it comes to MM you have to get into Hospital and as Dai says the sooner the better. As Henry is now in Hospital I'm sure they will sort it out for you both,I certainly hope so. As for the rude receptionist put in a report because that should never happen.

Best wishes Sarah and don't worry Henry will get over it just as I did even though at one point I doubted I would.

Take Care both of you.

Keith.

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