PDA

View Full Version : Wanted: tips on using a NIV



Robin142857
12th May 2011, 16:25
My MND (my? What am I saying?) has taken out my legs and now, for an encore, has started on my chest muscles. I'm told my lung function is down to 45%. I have a NHS VIVO 40 non-invasive ventilator - a machine that blows room air at higher-than-normal pressure into my lungs as I breathe.

The machine is so good that it is usually a struggle to stop using it because stopping means going back to gasping-style breathing. When I do succeed I lose the serious air hunger after half an hour or so, although the wish (compulsion?) to return to the machine is always very strong.

I find that doing something else (distraction) helps me stay off the machine, and I want to stay of it because, with the mask on my face, conversation is diffficult, and eating/drinking impossible. Further, wearing the mask can cause painful sores (bridge of nose - I have convatec dressings but they are not 100% effective) and tender areas (sides of mouth). The constant passage of pressurised air dries out my nose and mouth, and when I take the mask off (especially after wearing it overnight) my nose runs, and I mean like a marathon. Nose infections are also a problem. So, I think it would be best to keep my use of the machine down to a sensible minimum.

Does anyone reading this have, and care to share, any suggestions for controlling the minor but irritating problems I've described in the last para, or any other ideas (like distraction - at the moment I'm buzzing like a busy bee 'doing' stuff) for keeping me off the machine for longer?

All suggestions welcome!

Graham
12th May 2011, 19:44
Hi Robin,

My suggestions are sometimes considered whacky, but here is another imaginative one!

Why not enrich the oxygen in the room from a cylinder?

My knowledge from squash is there is 20% less O2 in the air at 25C compared to 0C.

The O2 levels in the room will need regulating, otherwise booom!

Best wishes

Graham

Robin142857
15th May 2011, 12:00
The NIV is given, apparently, to deal with high carbon dioxide, not low oxygen. In any case, I've no wish to have my own big bang!

Graham
15th May 2011, 19:18
Hi Robin,

What are your normal O2 levels from oxymetry?

Best wishes

Graham

Robin142857
16th May 2011, 19:30
98 after the night, 90 ish bt late afternoon.

katrob53
17th May 2011, 20:41
Hi Robin

My husband is suffering greatly with sores on the bridge of his nose. We have new masks delivered regularly but they only last a short time before they dig into his skin. It's making him really miserable although he's normally upbeat considering. If you do find any solutions I would be very interested in hearing them.

Jen

Traceygibbo
17th May 2011, 23:30
my husband also had sores on his face they look so uncomfortable and when it makes your skin sore it just adds to the problem .. sleep service nurses should be able to help but i really dont think there are any real solutions to wearing the mask even when they feel comfortable when you first put them on . i used to try Grahams on to see if i could understand what he was feeling and they are uncomfortable your 02 sound relatively good . itis about time someone cum up with something a little more comfortable but as they need to be tight to be effective i see no cure :(

Robin142857
20th May 2011, 14:53
Tracey and Jen,

I starteed to get a really sore bridge o' nose. I asked around and found a plaster designed to prevent pressure sores. It is available on NHS script, ask your doctor for Duoderm extra thin dressing 5cm x 10cm (pack of 10) by Convatec. It works for me, to a degree (extra thin means it doesn't cause a leak where the mask fits over the plaster). I cut six plasters from each 5 x 10 piece.

I have found extra relief by changing to a different face mask with nothing over the bridge o' nose. This is a ResMed Mirage Liberty (see http://www.resmed.com/us/products/masks.html?nc=dealers)

It has two nostril inserts and a mouthpiece. At first I thought it might give me the occasional day off from the other. Having got used to it (it takes a bit longer) I find I tend to wear it most of the time. o\f course, it too causes sore bits, but in different places and only over soft areas, so nothing like the trauma of the bridge.

Good luck.

Robin142857
23rd May 2011, 12:55
Tracey and Jen (again)

Since my last post I have been given a ResMed Mirage Swift mask to try. It has just two nostril tubes, no mouthpiece, and I'm (early days) finding it brilliant, 'though it does take some getting used to.

blackcat
26th May 2011, 11:47
My husband has been using the ResMed Mirage Liberty mask for a couple of years now - definately has been the best one for him in terms of comfort. He wears it for the vast majority of the day.

Robin142857
29th May 2011, 10:16
Progress report on the ResMed Mirage Swift mask. Am getting used to it and now prefer it for daytime use to any of the others. With it my mouth is free and I can speak! And it is very light. And no sore places. Go for it? (I got it from my respiratory nurse at the hospital)

I've now started a new thread to continue this subkect in case folk don't rerturn to this post and miss the good news progress report. See

http://forum.mndassociation.org/showthread.php?511-NIV-masks-comfort-at-last

computatec
25th June 2011, 21:06
I have now reached the stage where my breathing is shallow when I am lying down and I get panicky about it during the night and wake up with headache and feeling lousy. I have been reading Dr Kevin Talbots book "MND the facts", which has a lot to say about this probelm which has given me more confidence. I have to start thinking about NIV now and I am worried about having this done by our local NHS, who are stretched to breaking point. I have heard that the machine has to be carefully set up to match you normal rate of breathing and can be difficult to get right. I am considering using one of the MND funded specialist care centers to check if I actually need it yet and fix it up if I do. Can anyone comment on this?

Clive

Robin142857
2nd July 2011, 12:58
Hi Clive,

I started NIV just because I started getting nocturnal headaches. Turns out to be due to the stomach contents pressing against the diaphragm when you lie down and thus restricting lung volume. The outcome is a residue of CO2 in the lung and hence the headache, as you probably know. I bet when you stand up and move about the headache goes in an hour or so?

The NIV (I have a VIVO 40) is a cracking little machine, fear it not. Almost silent, very reliable and it solves the problem. You might wear the mask overnight - that solved my problem - and you might wear it from time to time during the day. Setting it up is no mystery, and you'll probably be able to persuade the nurses to let you access the set-up program if you convince them you're reliiable!

The hardest part is getting the mask right. You'll have to rely on their advice, but if you start with a full-face mask that crosses the bridge of your norse, make sure you get some Duoderm 5 x 10 extra thin hydrocolloid dressings from your doctor and wear a bit (I use them cut into six) at the contact point to prevent a sore developing. You may get the chaqnce of a second mask. If you do, try it out too - they all have limitations which can include mucosal inflammation. I get round those problems (most of the time) by switching between different masks for different occasions.

See also posts 11 and 8 in this thread. To answer your question, I founjd the NHS at Salisbury more than equal to the problem and see no point in not giving your NHS first try!

Good luck.

computatec
4th July 2011, 20:05
Hi Robin,

Since my last post I was admitted to the Papworth Respiratory support and sleep centre for four days. The problem had become urgent and I was really ill. I was scheduled to do DIY sleep test on July 20th, but My Neurologist felt that was inappropriate and starting looking for an urgent admission. I was collected by ambulance, examined and tested and sent home again by ambulance with a Nippy 3+ ventilator with humidifier.

The ventilator was a terrifying experience because it was left in my room without any explanation about what it did or how it worked. At ten thirty one of the night staff assemled it and put a full face mask on me, switched it on. The pressure was very high, the timing way out and my chest was aching in no time and my mouth and tongue were dehydrated. I could not speak and the staff could not understand what I was trying to tell them. Eventually they brought a humidifier, and I fell asleep at 2:00 am, exhausted. I awoke after four hours, in a state of panic, with water in my throat and coming out of the mask. I ripped the whole thing off and sat in a chair for the remainder of the night.

Next day the doctor told me the machine would learn my breathing pattern and set itself and was also fully adjustable. He wanted me to wear it that night and do another sleep test. The nurse made some adjustments and tightend the mask so it hurt, set it running and pushed off. I fell asleep eventually and slept for six hours. I saw the doctor and told me I would probably go home next day.

I was discharged mid afternoon on Saturday with the kit, but no user manual or instruction on how to use it. Once home I was able to download a full manual and learn how to assemble and use it. The machine was unlocked and I have used it for two nights. I wake up because it has stopped pumping, so I think the trigger is not set properly and the in and out timing is incorrect. I am now ready to call the 24 hour help line and describe what is happening.

I also got to see the whole range of MND specialist services and got advice from OT, Physio, Dietition
etc all in the same place. Joined up care!

To sum up: First the good news. The medical and diagnostic investigations were outstanding, far better than I had experienced before. The senior nursing team are specialists and beyond reproach in the caring way they deal with you. During the daytime 90% of the ward staff are the same. The food is brilliant and I ate everything.

The bad news is that if you are disabled and require adaptations to manage simple tasks you are in trouble. The room is very small so no room for a wheelchair and even a 4 wheel walker is very difficult to use. No handrails in the ensuite toilet, unsuitable low toilet, no stool, single chair in the room was crippling. During the day the bells are answered very quickly and help can be summoned. Night time is quite different with very low grade people and very few senior expereinced staff who are very overworked. Had I not been so disabled it would have been better. I was able to talk to a ward manager before I left and she agreed there were serois problems she had to follow up. The way this excellent NIV kit was dispensed was atrocious, but thank goodness I am able to get it sorted on my own. I think some sections of ftaff are overworked and dont have time to do some things properly.

They saved my life but crippled me. I dont know wether I will ever regain the mobilty I had when I went in.

Clive

Robin142857
5th July 2011, 09:54
What a story. And you survived! NIVs are a good thing, though,. I suppose getting used to them is the hardest bit?

When I started with mine I thought it would be fine because there were no drugs and therefore no side effects to cope with. Ahah. Wrong! Dry mucosa, wet mucosa, rhinitis, skin sores. I tried antihistamines, anti-infllammatories. and several old wives' antidotes. Best answer, in the end, was to have different types of mask and vary their use: full face overnight, with nose bridge padding of convatec (as before), partial masks in the daytime with the nose only mask now reserved for visitors and occasions when I want to talk.

I'm just about to try a double extension and use it when in the shower, and I shall start hunidifying later
this week. Do let me kinow how you progress and don't forget to adapt to change!!!!!!

Robin

computatec
5th July 2011, 11:02
Hi Robin,

I managed 5 hours on the vent last night and today I have got things into perspective. Because I was admitted as an urgent case I did not get a letter that would have explained the RSSC is a speialist unit and not like a normal hospital. I should have brought my own wheelchair or Rollator and phoned to tell them I needed a recliner chair and aids in the bathroom, so they were ready for me. on me day before my discharge they brought me a thing to go over the toilet, but this had to come from Addenbrookes in Cambridge. When I go back for follow up tests in six weeks time I will know how to get it set up before I arrive.

Leaving on a Saturday, I did not get the induction on the Nippy. The way Papworth work is like this. They deliberately remove the manual, so when you get home you phone a 24 hour dedicated line. You are then taken through the setting up. They already know from the last sleep test what the approx settins are and have a record for each patient. As I get used to it I can phone as often as I like and they will guide me through adjustments until its all OK. They say new users need support for some days after they get home and this is how they do it.

I phoned last night as alarms were going off every few minutes. The technician was totaly brilliant! He made me put the thing on and he guided me through every step, explaining what we were adjusting and what it did. I knew nothing about this because no one was on duty on Saturday to tell me to phone the number as soon as I arrived home.

I feel so much better today, so I am confident things will get better. Whoopee!

I think Hawkin's quotation shoud have said adpapt to very rapid change.

Clive

suefreespirit
29th September 2013, 09:22
I also have a NIV for nearly a year now , I attend the respiratory Clinic at Southampton Hospital , I gave tried several different types of mask and I use the one with the nasal nipples , I too get a sore mouth and nose , and the air pressure makes mu teeth sensitive , I use a cream on my nose , and make sure my mouth hygiene is good, I too use distraction techniques for when I am struggling to breathe , I know I, going to need it more and more , but it is a day at a time ,

bakeit Forum