It was bed-shuffle day on Friday - DH is 2nd on the waiting list........so I may need to get him 100 miles away tomorrow

[KatyMac]

Just been reminded of this by another thread

I'm at work F/T & no I can't just take a day off

My mum will have to take him - the 2 of them in a car together is fun not

DH hasn't packed "it won't be tomorrow" & has arranged to go out, so if I do get a phone call will have to chase round after him

I'm just whinging because I'm pissed off & not looking forward to dealing with DD for a fortnight by myself

He has cancelled going out

Thank goodness

Except that means he is feeling worse

No phone call yet

It normally comes about 10, so I think we can stand down for today

Katy I've not been up to date with what's going on, is dh down for op/transplant? Or into hosp for IVs? I know he has similar lung issues to me so just wondered what is going on. Hope things sort out soon. I know it's so hard. I was just in for a fortnight and it was hard going for dh with ft job and the kids.

Take care.

Just IV - it's been since July 09 so he's done quite well

But he has had 3 lots of antibiotics (each 14 days) in 7 weeks

He much worse today than he was on Friday & I was really hoping for a bed today

Are you at Papworth too?

He has missed a load of 'tennis' sessions because of appointments for DD - which they all see as him whinging; when in fact it's actually his 'physio' he has missed just less formal than an appointment & more use

Spoke to the hospital

There are definitely no beds today - there might be one tomorrow & if there isn't we have to consider putting him in locally

I don't know how that will work as last time he went to the local hospital they said his chest infections 'were just one of those things' & that they couldn't treat him

I feel quite scared by this

Hope they have one soon. That wait for beds is incredibly frustrating.

I'm not at papworth but know a few people who are and speak highly of it. I'm more oop north.

Have they not got a dx for him yet? The recurrent chest infections thing is frustrating, I had that for years until they CT scanned me and found the disease i have.

thinking of you - if you ever want to chat more about it all I'm usually around. Hope the IVs do the job.

He has bronchiectasis but only a little bit

Plus he has low/no immunity to heamophilus influenza

Oh yes and the chronic asthma

But no actual diagnosis as such which would explain it all - they are at a bit of a loss.

Bronchiectasis is what I have Katy, but severe, plus the asthma. They can't always explain bronchiectasis, it can affect somebody hugely more than it would seem, even if they only have a small amount. I suggest you have a look at this website which is a community and info for bronchi sufferers, you'll find some invaluable stuff on there and people who really get it - a lot of spouses/kids/parents of sufferers post there too.

I know what a frustrating place it is - hang in there.

I'll have a look, Thanks

For DH physio is a real issue he can't do huffing as it hurts too much & they haven't shown me anything else (DH doesn't remember)

Funnily enough this is exactly what I'm working on with my physiotherapist at the moment. She is teaching me a technique called autogenic drainage which is a much gentler method of shifting the crap - it's a slow learning curve but I'm getting the idea - still involves huffing but much more gently. I suffer from chronic chest (pleural) pain so really struggle with physio. I have an acapella which also helps shift it, but like your dh it is the huffing that hurts. Might be worth asking his physio about other methods?

We need to ask on this admission because with the huffing hurting so much it's not getting done

Panicking now about going to the local hospital

Will I have to tell them what he needs?

He got a bed

Thank goodness

Right I'm off- back in 5 or so hours

madhairday how often do you have to have IVs (if you don't mind me asking)

Don't mind at all Katy. It varies tbh. Bad years it can be as much as every 3 months, better years perhaps once. Had some in July and it's looking like some more again soon but hoping not. Sorry this is a bit vague really but it does vary.

How is dh doing? All settled? what IVs is he on?

He only gone once each year - this is the third year

They got him in yesterday but aren't starting IVs 'til today - I should know what he is on my teatime

So all that hassle getting him their by 2 yesterday

At least he is well fed

Oh I feel your pain re admission time and then not starting the IVs till hours later or next day. sooo frustrating but always happens. You learn to live life at a v different pace in hospital!

Hope he recovers quickly on them and feels a lot better soon and hope you are OK at home, thinking of you.

He will be fine 14 days will make a massive difference

We need to decide whether we are going to stay over at the weekend & see him both days

He is on a machine for 3 days & then his IVs is Tazocin - which I never heard of

I've had tazocin a few times Katy, it's fine as long as the nurse doesn't administer it too quickly! It's meant to be slowly over 5 mins, one did over 30 secs and I felt rather weird.

Have you got somewhere to stay near the hosp?

I told him that

He said the nurses know what they are doing........the power has gone to his head

Hope he is feeling better soon Katymac.

Do you know what bugs he grows in his sputum?
Would nebulised antibiotics be a treatment option? they can be very effective at keeping infection under control and reducing the need for IVs.

I agree with what madhairday says about Autogenic Drainage, it is a much gentler method than huffing.
There should be physios at Papworth who are familiar with the technique and can teach your DH.

Generally haemophilus influenzae occasionally MAC

They haven't offered the nebulized abs, they did offer the ab in a pump/machine but then they changed their minds

I have big hope for the physio to get him sorted