Emotional support

[Para1471]

. A family member was diagnosed with bronchiolitis obliterans (which I presume is similar if not the same as obliterative bronchiolitis) in July. Since then there has been very little support really - she's on all kinds of medications, was meant to be reviewed in October but is still awaiting an appointment, and is awaiting intravenous steroids next week. There has been little support from her consultant or any other medical professional. She is now feeling very fed up, watching her condition worsen with just family and friends to support. If she had cancer there would be a McMillan nurse to support; is there anyone who provides this sort of service for her condition?

[Katinka46]

I do so sympathise. With these unusual/rare conditions even consultants can be at a loss. I explained to a consultant that I could do with some help and support from a nurse specialist, and I am now in touch with the local respiratory nurse but there is little that she can do apart from listening to me. I would be very interested to know a little more about your relative, if you felt that she/he would be happy for you to give a few more details? History? Symptoms? OB usually has a cause, damage from inhalation of toxic substances, or a nasty infection, and it can be — sadly — a consequence of lung transplant. Mine was really difficult to diagnose because it appears to have been the result of damage caused by PEs, and no one had ever come across that before.

Please get back to me if you are comfortable to tell me more.

All the best

Kate

[Hidden in reply to Katinka46]

What a lovely reply Kate,

I hope Para feels able to confide in you, because you are in the best position to offer really good support.

xx

[Katinka46 in reply to Katinka46]

P.S. I prefer Obliterative Bronchiolitis because I don't want to own up to having BO... Who would?

I think there are some technical differences.

K

[Para1471 in reply to Katinka46]

Bizarrely the consultant has no idea how she got it. Never smoked, never been exposed to asbestos or chlorinated substances, never had a lung transplant. They just thing it was caused by a "virus". Had symptoms for about 9 months and hospitalised twice before a final diagnosis.

Now breathless when moving anywhere - walking to the kitchen leaves her breathless and suffers with chest pain (all heart checks have been clear) all the time. Has experienced some vomiting after drinking too quickly. Exhausted all the time, depressed and frustrated at not being able to do anything, feeling guilty that all she can do is sit and watch TV or read all day especially as when people come to see her, as long as she doesn't try to move at all, she appears "fine!"

Lung function (I think, not lung capacity but might be that) was down at 27% when last tested in August time.

Weirdo oxygen SATS were still up at 97%+ when last tested but again since she hasn't seen anyone since September who knows what they are now?

[Katinka46 in reply to Para1471]

Thank you very much for your response. It does sound very difficult. And so very frustrating. My lung function, FEV1 and FEV1/FVC, Is better than hers. And my oxygen stats are normal too, except when I exercise intensively or just pottering on my feet for more than twenty minutes. Then they start to drop. Even then I do recover. Has Pulmonary Rehabilitation been suggested? I believe it is recommended for OB, (or BO) patients. I started the course but had to pull out because it was making my symptoms worse. But there are other things going on in my lungs as well as OB, and we, me and the physios running the course, decided that the other factors, vascular disease, and possibly Pulmonary Hypertension were causing it. It is a pig of a disease. Unfortunately there does not seem to be a lot to be done. The doctors will try various medications. Some OB patients benefit from Azithromycin. I believe it can stabilise. So the doctors will want frequent PFTs to watch the trend. Although it is not caused by smoking the fact that she is a non-smoker will help because her lungs will have been very healthy before it started. When someone is that breathless it is exhausting and --- mentally as well as physically ---draining. I was able to take up painting when I could no longer get out to walk. It has been of huge benefit to me. I do hope that she can somehow get into a place where she can come to terms with it and work ways in which she can do things. Reading and watching TV are absolutely fine in my book. Try to encourage her to be kind and gentle with herself.

All the best

Kate

[Carnival567 in reply to Katinka46]

I too was breathless and exhausted even crossing the room but QVAR is helping and on good days I can walk 20 yards or more. Gosh! Everybody says I look well, which on bad days can be very annoying. I was booked for PR but on consultant's advice have had to postpone it until the diagnosis is con firmed.

[Hidden]

I was out on my own for 23 years and fought many a battle to get the right support and treatment for my own COPD. Problem is resources are very scarce, consequently it's up to the patient to ask and ask again, and at times even demand especially if they feel their treatment falls below par. Don't sit there in silence and expect the support and services to arrive, I'm afraid that no longer happens! Quite often these days you do have to SHOUT to 'get noticed' before anyone sees you. I've reported quite a few departments and even GP surgeries to the CQC and through their investigations, I've always received a positive result.

Take a look at these sites, they may just give you some answers.

nhs.uk/Planners/end-of-life...

cqc.org.uk/

You can also contact PALS at the hospital where your family member receives their treatment, (there's a PALS office in every hospital) their number will be freely available on the hospital website, drop in or give them a call, they will help.

By the way I receive Home Palliative Care from my local hospice, doesn't mean I'm about to shuffle off, however they give me a phone call every two weeks and we have a chat about how my health's been...it's the 'knowing' that there's professional help and support there if and when I need it and that makes all the difference in the world..so I do understand how your relative feels

Best wishes

[O2Trees in reply to Hidden]

Ive never heard of anyone complaining to the CQC before, and that it's effective. Good for you, and important for everyone to know.

[Damon1864 Volunteer]

Get in touch with the Marie Curi organization. They deal with lots of different people. Just a suggestion good luckxxc

[Hidden]

Hello 02 ...

I think half the problem is that we aren't a nation of 'complainers', don't you think?...OK so we sit and have a moan at each other about our lot in life, but we do tend to do the 'stiff upper lip' to the point where it's almost touching our nose...!! I'm afraid I'm not one of those people.

I really do say this with no relish, because I'd sooner not have to complain about the good old NHS a service that I; like many others hold dear. But through complaint to the CQC I've had a whole hospital department inspected and immediately closed down, and only reopened after total re-organisation. Also after reporting to the CQC two separate GP practices I was a patient with, received unannounced CQC inspections (One of those practices was placed in 'special measures', the other put on warning) ... there are quite a few more 'instances'..but I'm certain you get the idea...told you I was a complainer

Way I look at it is that I have; through my complaint' stopped any other ill or vulnerable person, who hasn't the energy to complain, from receiving the same poor quality of care/treatment, .. So far as I'm concerned, job done!

[Carnival567 in reply to Hidden]

If those of us who can don't complain then it makes it worse for those who are not able to.

[Para1471]

Thank you all so much. It's is only through turning from Mrs Nice to Mrs Nasty that she has been able to get the appointments for the IV steroids. After weeks and weeks of gently reminding the consultant that he'd said he'd sort it out, she became a bit more forceful and within 15mins of speaking to him she was booked in for 7 days later.

I too am grateful that in this country we have the NHS but it doesn't stop me getting frustrated with it. I have worked with parents of children with special needs over the years and they have all said they have to fight for everything for their child. It is saddening to hear that but to now be witnessing it directly affecting the ones I love, is heartbreaking. Life is hard enough for her now without having to fight for everything.

The county council turned down her application for a Blue Badge, saying she needed to require walking aids (she has a wheelchair and a mobility scooter) and she had to have a permanent disability. Presumably the doctors diagnosis of "lifelong and incurable" didn't meet that criteria. Fortunately she appealed it and has now got it but it was another fight she shouldn't have had to have.

[Carnival567]

I know how you feel as I was diagnosed with bronchiolitis obliterans (same as obstructive bronchiolitis) last month, probably caused by the dronedarone I was prescribed for AF. Rather ironic really as my then cardiologist was very careful not to give me amiodarone which is known to cause lung problems. My new respiratory physician is excellent but new cardiologist has not yet replied to either my questions or the resp doctor's request about stopping dronedarone. I have the bronchoscopy on Tuesday, followed by 7 day heart monitor fitting on Wednesday, next week. There is no support for lung problems that are not cancer as far as I can tell. I went to post prostate cancer seminar with my husband and found myself in tears when they talked about living with a serious illness so I went to GP and have been referred to counselling. My excellent respiratory nurse is going to see me in early January, her reaction when I told her was "oh". It is of course a very rare disease, as is my heart problem. My family's reaction has been 'typical, Mum can't do anything straightforward!' but are very supportive. My elder son, who is autistic, still reckons that only a lightning strike will finish me off! Avoiding thunderstorms! On a lighter note, we have just bought a cocker spaniel puppy from a friend and are collecting him in January. That will liven things up a bit.

[Katinka46]

Thanks for the explanation. I read your earlier response and now it all makes sense. I think, in some ways, with a rare disease like OB, we are in uncharted waters. There are simply not enough of us to gather the statistics to see what is going on. There are some general symptoms: breathlessness, chest pain. But diagnosis is tricky. My consultants will not confirm that I do have OB. It is on my dx list as "possible", I think it is because they cannot come up with another explanation that fits: sudden onset obstructive disease is the small airways, resistant to bronchodilators, steroids, and caused by disruption to blood perfusion in the microvasculature. Which, incidentally, is how OB happens in transplanted lungs. My consultants are reluctant to do a biopsy, they say that only open lung biopsy would confirm the dx. And they are reluctant to do that, and I am not keen to have it done. So in the absence of anything else I say I have OB. If I am talking to doctors I will add the proviso.

Please let us know how things go. I am very interested.

Kate

[Carnival567]

My consultant has put a question mark on the report to GP but at the consultation he told me I had OB and it certainly seems likely as the symptoms match, also have emphysema and bronchiectasis (presumably). One interesting thing he said was 'you are not imagining it'. Sitting still causes no problems but walking 20 yards is sometimes a problem. Very difficult to explain.

[Para1471 in reply to Carnival567]

Hi Carnival, my mum is also finding the "fine as long as I don't move anywhere" very difficult. It frustrates her so much and she complains that she feels other people must thing she's lazy or a fraud. I might try to get her onto this forum as she's finding it quite lonely I think. She's just done pulmonary rehab for 6 weeks but that just proved to her how little she was able to do which depressed her further.

[Carnival567]

I have been told I can't do PR yet - I was booked in for January - but consultant wants me to wait. I do sympathise with your mum, you do everything you can to cope ao people say you 'look well' which is kind but makes you want to scream! Try to get her on to this forum she will find it really helpful and supportive. Good luck.

[Para1471]

Mums had the first of three consecutive days of intravenous methyl-prednisone today. Has anyone with OB or other lung disease had this treatment? Did you have any side effects? Did it improve your condition / breathing?