NHL relapse after 10 months

I would guess that yes, most purpose built units (should) have en suite rooms with hepa filtered air and an air lock type lobby where anyone coming in has a place to wash hands again and put on an apron. However it seems some hospitals do not make this facility available. 

I’m not sure if you can insist on being transferred to such a unit? It might make for fewer visitors, but lessen the risk of potential infection problems?

hugs xxx

I am rather mystified by the range of attitudes. My hospital put me in an open ward while I had the early chemo rounds, only moving me to a private room when neutrophils dropped too much. Sometimes this was a fully filtered and airlocked room, sometimes just an individual en suite. I had the full airlock for the actual transplant cycle. But I hear of some hospitals where they put you up in a hotel and you are walking back and forth in the street for your treatment. 

The point of the apron is to protect the staff uniform from your body fluids, so they don't then carry them to other patients. But their clothes will still have whatever else they have picked up coming in on the bus, standing in the smoking shelter or going to the crowded hospital café. I think the most important thing is that points of contact are clean, and no one is breathing out viruses.

Tessa

I think I’ve mentioned before that being in a private room had its benefit with regards to getting a rest when needed but I missed the company and conversation so spent large periods touring the rooms of fellow patients swapping life stories. I’ve made friends for life in there and fortunately didn’t pick up any bugs in doing so.

The air lock system you refer to is really nothing special and is simply known as positive air pressure. The air is normally taken from outside and specifically filtered before been forced into the room at a greater pressure than it’s surroundings such as the corridor. This then ensures that any air movement should normally be from within the room to the outside and hopefully stopping airborne bugs from entering against the air flow

Anyway, sorry if I’ve waffled, I’m an Engineer, it’s what we do.

Regards

Mark x 

Ah, that makes sense. When a new patient came in with a cold, they wanted to put him/her into a room without the air system. They said that otherwise the system would spread the bugs out into the corridor and the staff might catch them. So I was asked to swop rooms. I didn't like the en suite in that room, so said yes, not realising it would mean six weeks staring at the brick walls of an inner courtyard. 

I don't think there was ever any visiting between rooms, but when our neutrophils were a bit better, we could walk down the corridor to a small seating area. I only once found someone else there and I don't think either of us had the energy to chat.

Tessa

I was in a private room for the entirety of my treatment (seven months, on and off)  and assumed that was the norm.  The staff were strict about not going out and about. I couldn't have coped with having anyone else around.  It was bad enough being in hospital at all, without having to run the gauntlet of other patients and their visitors. 

I was in a private room with ensuite when I was first admitted to my local hospital (as an 'emergency') and then moved a couple of days later to an air-locked room where I stayed. Later, when I moved to the transplant unit, the rooms in their new part are all airlocked.  I was moved to one of the older rooms towards the end and when I was in again with gvhd, which didn't have an airlock. 

A few months ago I was readmitted to my local hospital unexpectedly with a gall bladder infection, for IV antibiotics (I had been expecting to be sent home with an oral course)  and put straight back into a private room on haem onc, because I was still immuno-compromised  and, as far as they were concerned, transplant-related treatment 'trumps' everything else.   It was decided that the haem onc consultants would call the shots, which avoided a gung-ho surgeon taking out my gall bladder there and then when I had high infection markers and was immuno-suppressed with steroids.  (I refused flat to sign the consent form.)   I went out and about between treatments for walks round the grounds and to locate decent coffee but I was not neutropenic and had a lot of experience of managing infection risks with masks, gel and hand-washing.   I expressed surprise to the nursing staff, who told me that many of their patients on the haem onc ward were actually post-cancer patients who had been admitted for similar probelms to mine and that it wasn't unusual.  

There seems to be a really tight and wide-ranging control over what happens to transplant patients in my area.  While it is annoying at times, it does go some way to explain why it is one of the best units in the country.  Last time I saw my consultant, I commented to him that I was (obviously) pleased, but surprised to have 'got away with it', particularly given how ill I had been when I was first diagnosed.  He replied that, in fact, most of the transplant patients who go through their unit do recover well. 

To be honest MissSatomi I think I was a bit naive and was probably lucky I didn’t catch anything. It was only a small ward with 8 rooms but the all the staff were quite relaxed about me moving around. I think if I get to have an Allo I will need to be a lot more careful. 

Regards

Mark x

When daughter had her auto she was in the only air locked en-suite in the entire general hospital, it had been well cleaned before she got admitted but had been so often used as a standard side room so when she needed both doors closed as her numbers dropped, she got very used to yelling ‘door’ at the staff, they didn’t often have any auto patients in there so needed reminding of the right procedure for a day or two! 

However, the transplant unit in the Christie really is well thought out and staff are strict about doors, hand washing at the ward door and repeated at the rooms, and I think they have a good record. 

Hugs xxx

Hi all....just 8 nights on the 2nd RDHAP admission rather than the 11 nights in hospital that was the first!! Sickness managed with apprepitant, nosynog??? And a syringe driver with haloperidol! Unfortunately they found a heart anomaly on echo so more meds and investigation. If this doesn't kill..I'm hoping it will cure!

No follicular found in bone marrow biopsy...I had gas and air and I didn't feel a thing, lol

Pet/ct on 9th.....hoping won't need 3rd course as being on the ward  surrounded by germs attached to other people is doing my head in

Foot hasn't improved....think nerve may have been too badly crushed. No one really wants to know. Have got a dapper dynamic foot splint.

Auto room is ensuite....one is where I was put on first admission next to .the staff room, desk and sluice ( macerator used 24/7) sooooo noisy

Other one has a chain across doors and is also used for radioactive thyroid patients....no air .filters!

Basic here in Ipswich but a great team of haematologists!

Platelets 39 so infusion today...I'm never away from the place.....

All the best to all

Lynda xxxx

Good morning Lynda, I liked your post, not due to you ongoing issues but more to do with how you are looking the issues straight in the eye and saying “you ain’t got me yet sucker” or something like that

En-suite is good, staff room, reception and all the rest - bad “Mike we are keeping you near us to keep a good eye on you and make sure you are well looked after!!!”..... a sleeping mask and silicone gel ear plugs did the trick.

Heart anomaly, not surprised that your old ticker is complaining. My one fought back at everything that was going on but has not been a lasting problem.

Nosynog? must be named after a character from CBBC 

You are on inspiration to everyone who has to go on this (inset words) journey and all your persistence and perseverance deserves a great result at the end of this.

Hi Lynda,

might be Nosinan (not sure of spelling!) 

noise cancelling headphones with some soft music might be an answer to the noisy room too?

hang on in there.....

hugs xxx