Bronchiectasis & pseudomonas treatment - British Lung Foun...

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Bronchiectasis & pseudomonas treatment

rossiedavid profile image

My daughter was diagnosed with Bronchiectasis two years ago .We believe it was a case of bad management through not being given any antibiotics when she had a bad chest infection which ended up with hospitalisation with pneumonia.The complication was that as she had a kidney transplant 17 years ago (she is now 42) her immune system is very low.

She has two young children but she now has yet another chest infection-

Pseudomonas, which as all sufferers know is very difficult to get rid of.

She is due to go into hospital in a week for a two week course of IV .

I thought I read a post a while ago that someone actually was able to have this at home .

Does anyone have any information on this please?

23 Replies

What a lovely photo 😊 Though I’m very sorry to know your daughter is experiencing these problems. I think it’s cofdrop-UK who has home IVs. She too has been having a hard time lately. Best wishes to you and your daughter.

Thank you for your prompt reply.I will see if I can contact her -

Best wishes

Hello rossiedavid,

I'm sure that cof drop will be along but hope I can help. I am a lifelong bronch, diagnosed at 3, now 69. So I have been on this roundabout all of my life.

Firstly, your daughter should have a bronchiectasis specialist consultant. Not a general respiratory consultant because they have no where the training or experience in bronch that the experts do. It is no good relying on the GP. They know nothing about bronch and need the instructions of the expert to tell them which antibiotics etc to give. These experts are usually at big teaching hospitals. Find one on the internet, take the name to the GP and insist on a referral. Do Not Take No For an Answer.

The bronch consultant will decide on the treatment to keep the pseudomonas levels down to manageable levels which ranges from oral antibiotics through permanently inhaled antibiotics to IV when needed.

Although I have had pseudo since 1986 I have only ever had 4 sessions of IV in my life, due to the management which I have ( and a dose of luck)

As to home IVs. This is very patchy in its availability and the patient needs to be very confident to do it. Until recently I was unable to have home IV because my consultant is at a large hospital in Bham. They have recently set up a system whereby I can get the IV to do at home from my local hospital, in cooperation with my consultant.

Bronchiectasis is complex to treat and requires a lot of self management. In addition, your daughter has added complexities because of her transplant.

This is why she needs the services of a bronchiectasis specialist, their physios and physiologists.

I know I am a nag but it is so very important in the long run.

I hope that helped.

Thank you so much for your good advice - it’s such a help to speak to experienced people like yourself who have been through similar health problems.

I will most certainly see if we can find a Bronchiectasis specialist in Gloucestershire.

Thanks again for your help - greatly appreciated

Regards Ros

We are here for you and your daughter. If you don't mind travelling I suggest that your daughter sees my consultant at the QE in Bham. She is co chairman of the committee which wrote the latest guidelines on bronch. She is also very nice. I will pm you with her name.

I am glad Littlepom has replied to you as she is a mainstay on here for bronchi sufferers. And an inspiration x

Yes I am very pleased to have her experience & good advice.

Beautiful ‘photo.

Littlepom has given you some good advice and hopefull the name of a respiratory conultant who has aa special interest in cf/bronchiectasis.

As LP says there are many treatments from oral antibiotics to IVs to manage pseudomonas and things inbetween. Orally Ciprofloxicin is pretty much the only antibiotic to which the bacteria is sensitive to.

It is good that the hospital is trying to get your daughter to her optimum best with IVs but she should be taught lung clearance by a respirtory physio and should do it every day herself thereafter.

The next path they often go down is nebulised antibiotics which you do at home. This is to keep the pseudo numbers down to a manageable level.

Sometimes they use prophylactic medication i.e. Azithromycin which is usually taken 1 Mon Wed and Fri, although this varies depending on what your consultat and your daughter find beneficial.

Unfortunately for me for various reasons I am intolerant to Azith and the nebulised abs I have tried and that is why I have to resort to IVs.

I will reply to your pm shortly.

Cx

I've had iv treatment for pseudomonas and other infections at home several times now. I do it my self. Your hospital vascular access team can insert a midline and show you how to prepare and administer the medication. I've had ceftazidime, amikacin, meropenem and many others. The only ones you can't really do at home are things like gentamicin and voriconazole where your trough levels have to be monitored

I’m in the same situation after having an infection they cannot get rid of with repeated courses of oral antibiotics. I have an appointment on Tuesday afternoon for them to insert a midline and teach me how to administer my own IVs for two weeks. The other offer was a session as an inpatient and then teach me whilst I was in and finish them at home. I would prefer not to be admitted if it can be avoided so I have said I will learn. They have asked me to bring my husband as well so someone else can support me. It’s quite intimidating but I take note of Littlepom’s comment about taking personal responsibility for our health and so I will be learning and then I can stay at home. I’m having Tazocin for 2 weeks which my consultant compared to Domestos to try to clear it up once and for all. Perhaps your daughter can ask if she can learn home IVs instead of 2 weeks away from her family? If my local hospital can teach me surely her hospital has the same policy?

Wishing your family well.

Littlepom profile image
Littlepom in reply to Clareyg

Unfortunately this facility is still not available at all hospitals. Although allowing patients to take control whilst also saving the NHS thousands in bed coats is a no brainer.Until recently anyone requiring it through QE in Bham had to be admitted and then visited at home by a private nursing team who administered the drug. You can imagine how overloaded they were! This basically sitting on a ward for days until your name came up on the visiting list.

Another large Bham hospital has been instrumental in setting up a system whereby the consultant at the QE and the ambulatory ward at the patient’s local hospital cooperate to insert the line, train the patient, supply the drug and be available for support. I have spoken to the ward and it is all (hopefully) ready to go. So far I have managed to avoid the IV but the sense that the service is there instead of a battle to get admitted to the QE 25 miles away is such a relief.

I am so happy that you have this service and hope that rossiedavid’s daughter is able to access the same.

I hope that the Tazocin works well for you.

cofdrop-UK profile image
cofdrop-UK in reply to Clareyg

There are many different policies on self administered IVs from hospital to hospital and even from consultants. At the hospital I attend, if your con is part of the cf unit and they and you are happy willing and confident then you can do your own IVs. Following having your midline inserted you should have your first dose which you will be guided through. Half way through IVs we have a visit or go to the hospital for bloods, weight, spirometry, sputum sample etc. At the end you have the same again and see a doctor.

Please don’t worry too much, it does eventually become routine and they should always be a phone call away.

A few years ago my con wanted me on Meropenem but when I went into hospital for my first two doses it was teatime. So a junior doc contacted microbiology who said from my previous results they could give me Tazocin instead. The next day the cf nurse came and told me that Tazocin was not licenced for home use. Probably my CCG. My con came and sorted it and I went home doing Meropenem.

If policy is universal you will have to have your first two doses at the hospital.

Good luck and please let us know how you get on.

Cx

janice01 profile image
janice01 in reply to cofdrop-UK

Thats interesting cofdrop coz l have had tazocin at home.

Its been administered by Nursing Sisters (or perhaps its Charge Nurses) visiting 3 or 4 times daily.

Ive been quite well (although limited) for several months now after flu in Feb 18 took over a year to recover from.

I was told would always be on steroids (after using them at high dose for several months), but lve been off those for almost 7months now.

As you will know, it isnt easy but it can be done....

Take care x x

cofdrop-UK profile image
cofdrop-UK in reply to janice01

Glad you have had a spell of feeling fairly well janice - long may it continue for you.

Apologies I probably didn’t explain myself very well. I would think they would at that time allow a nursing home IV team to administer Tazocin at home but it was not licenced for patients to administer this medication by IV themselves. That’s why it was changed to Mero, so I could do them myself.

It must be a pain having to have them coming in so frequently, so you did well.

Love cx

You have had lots of replies about this. Just to say I have had pseudomonas and got rid of it with Ciprofloxacin . I have also had IV antibiotics at home here in South East Scotland, self administered. It only takes a nurse to show a person how to do it. Anyone who is sensible can learn , it's not difficult. Cleanliness being vital. However, given your daughter has two children maybe complete rest in hospital will help too. Fingers crossed for her.

I also have bronchiectasis and am colonizing a couple of gram negative bacteria.... currently inactive (I use food, herbs and spices as medicine and feel that is responsible for much fewer exacerbation s ). Medical costs and coverage differ for everyone. I learned after having IV antibiotics at home that they weren’t covered by any kind of insurance and as a result am still repaying the almost $15000 not covered! The last two times, I’ve opted to have in hospital where they are covered! Her situation may be different! Wishing her the best as she researches available options.

Ginty Ferguson’s comments re ‘your daughter having 2 young children and maybe complete rest in hospital will help’ has given me food for thought.

Although I am sure following this arranged hospitalisation there will be other ways to manage your daughter’s broch, there are things to consider if she does eventually think of doing home IVs.

I have an 8 year old granddaughter and a year ago told her Mum she is very worried about grandma. My daugher and I were discussing this with a lovely cf nurse checking my technique of administration. She said she thought it much better in her experience not to hide things away but to allow her to be involved - cleaning the little ports and the top of the meropenhem. She did this and said ‘well I’m just cleaning really’. When I explained that being scrupulously clean was the most important thing, she thought for a bit and then said “I would have thought the medication was the most important.’ Put to rights by a 7 year old.

I would just say that with the infection itself I felt too rough for her to be there for the first couple of days and doing the IVs can effect you too. I was happy for her to be there with her Mum after that. So I reckon with 2 children that should be taken into consideration.

Cx

Hi cofdrop

I have also been thinking that although none of us really want to go to hospital,that resting is also a very good healer.

My daughter just worries because of her low immune system through immunosuppressant drugs for her kidney transplant, that she may contract something else.

Twice this has happened in the past.

I believe they are arranging for her to have a room on her own so hopefully that will help.

Her children are quite "full on " at 5 & 8 years,so a rest from the general day to day living would probably be a great help.

Fortunately both myself & my husband are retired & live only half an hour away so we can certainly lend a hand or two.

Thanks for all your helpful advice.

Good point re cross contamination and pleased the hospital are taking your daughter’s other health issues into account.

“Full on” is hard work, so you too better get some rest too!

Cx

Why aren't they giving her nebulized drugs first before an IV. to ramyacin, Colistin and Cayston r nebulized..cipro and levaquin are the pills??? these drugs are first line for psedomonas..... is it because she had pneumonia???

Hi Neville

I don't know the answer to that - she uses a nebuliser daily but as far as I am aware it is only a saline solution to thin the mucous.

I will get her to ask that question - would certainly be a lot easier.

She had pneumonia two years ago as a result of a chest infection that was not treated with any antibiotics in time, which in turn gave her Bronchiectasis.

Thank you for pointing that out to us.

A local hospital on Essex/Herts border has 'Hospital At Home'.

Get visits and iv antis, get up to 4 visits daily.

For me its been great.

They need to have a space on the system at the time you need it and you need to be well enough and capable enough to use the programme.

Ive had to wait a couple of days at one time.

Husband drove me back and forth to hosp for intravenous treatment until a space came available.

I should perhaps say, lm expert where my lung conditions are concerned.

And l know exactly what is right or wrong for my lungs.

Expierience is the key....

I wish your daughter a speedy recovery...

Janice

rossiedavid profile image
rossiedavid in reply to janice01

Thank you Janice for all that information- all good experience to use when we speak to Layla’s consultants

Regards Ros

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