A need for info to help stop my Obliteration!

Buka · 20. Feb 2018, 17:25

Well it's been an interesting year (No 17) in my RA life. A nasty chest infection last March suddenly made life a lot more difficult. I was abroad at the time and did my usual self administering of anti-biotics (with GP agreement) but recovery was slow. Returning home in September, and still not fully fit, I decided I needed to investigate further and we are now numerous tests/xrays/scans/bloods down the line and it has been suggested that I have a Rheumatoid lung disease called Obliterative Bronchiolitis. I hadn't come across this one before. I'd heard of all the others like COPD and ILD and IDP etc etc but apparently there is this one too and I seem to have it. All I can say is who on earth thought that name up? Anyway, I now feel obliged to hang around a bit longer just to be annoying, (no one obliterates me) and wondered if there was anyone out there with any experience of this one. I can read up on it and depress myself or maybe just have some info/advice from anyone who has first hand experience. I do prefer to keep a positive frame of mind.
Secondly, I wondered if anyone has had a TKR using an
epidural/sedative rather than a GA. I need both knees doing but am not allowed a general anaesthetic at the moment, because of the lungs,so it could be an alternative route. Many thanks.

stickywicket · 21. Feb 2018, 05:02

Please don't be obliterated.

What a cracking name though!

Frankly, I've never heard of it and never come across the term on the forum. It sounds nasty and I hope it isn't. Well, anything to do with lungs and (not) breathing is nasty but they could have made it sound more pleasant.

Good luck with your investigations.

barbara12 · 21. Feb 2018, 05:35

Hello Buka
And a warm welcome to the forum form me and good for you fighting back..I am sorry you are having all these things thrown at you, I'm afraid I cant help on the chest query..but I had both my hips replaced with an epidural, they also give you a sedative , this knocked me out ..but coming round was a doddle compared to a GA..wishing you well with everything..

dreamdaisy · 21. Feb 2018, 06:50

Oh dear, I cannot help on any front, sorry. :oops: I hope those who have had replacement surgery under epidural spot your post and get in touch. DD

casandra · 25. Feb 2018, 09:50

Hi there. I had TRHR with epidural and sedative. It was brill and coming round was amazing was wide awake. I would certainly recommend it. Log on to bonesmart. It is a forum for knee and hip replacement and has all the answers for you. You will find people onn there that have had both done at once! Good luck with the op. Cas

wazz42 · 25. Feb 2018, 12:51

Hi,

Just wanted to add my experience, Barbara advised me to have the epidural as I have struggled in the past. It was a totally different experience, I had a sedative and slept most of the way through, when I woke it was fine, had a chat with the anaesthetist while they finished my knee op, my head was clear, fantastic.

The anaesthetist said this was his preferred method for ortho ops as it's easier to get functional after. I wouldn't choose anything else now. That was 6 weeks ago, Daisy new knee and I get along very well, I hope your recovery is as good

Love Wazz

xxx

Buka · 27. Feb 2018, 06:04

Hi all,

Been away so apologies for the delayed response to your messages.

Thanks to all for getting back to me. I must admit that when both Sticky and DD hadn't heard of my diagnosis my heart sank. They know so much between them that if they've never heard of it then there wont be much out there to report. I was told it was quite rare and not much research has been done. So, I think my mission will now be to: 1) carry on refusing to be obliterated and 2) make notes on how this plays out for anyone who may need info in the future.

Right now I feel great but a 30mg dose of prednisolone tends to have that effect on me. So I will enjoy my steroidal pain free holiday until mid march and see where we go from there.

The wonderfully positive posts about TKR under epidural/sedatives were so heartening. I'm so glad you all had a good outcome and wish you a continued positive recovery. I have put this surgery off for 6 years now but feel quality of life is now beginning to suffer and as I will undoubtedly get put on a waiting list I think I need to get on with it and you have all helped me with that decision.

So onward and upward and hope everyone out there is having a bearable day!

Thanks again folks.

Buka

stickywicket · 27. Feb 2018, 10:03

Buka wrote:

I must admit that when both Sticky and DD hadn't heard of my diagnosis my heart sank. They know so much between them that if they've never heard of it then there wont be much out there to report.

:shock:

I'm not quite sure whether that makes DD and I quite learned or true saddos

Probably more of the latter

Seriously, I've discovered over the last year or two, researching such stuff for a family member, that there are a whole host of autoimmune conditions which are largely unheard of. This doesn't necessarily mean they are very serious and most of them will not obliterate anyone

Most of the stuff I found on the net (Well, I had to live up to my new reputation, didn't I

) about your condition is on sites I neither trust nor distrust but here is something from the reliable ARUK. Just scroll down for the relevant bit. https://tinyurl.com/yc5dqvbl

We can all get add-ons, either from the disease or the meds, but mostly we don't and, when we do, they are controllable. I hope that'll be so in your case.

dreamdaisy · 27. Feb 2018, 13:38

The auto-immune arthritic life is a complicated one: Sticky and me know our stuff but we don't know everything - well, we pretend we don't when actually we do.

I hope you enjoyed your few days away and are not finding the cold weather too onerous. I remember the glory days of steroid-induced wellness, now I refuse to take them when offered as a short, sharp shock because my name is DD and I am a pred-head.

DD

Buka · 27. Feb 2018, 17:14

I had a wonderful couple of days on the North coast of Wales in that glorious sunshine. I had four layers on, with all parts covered and protected, and was described as 'Nanook of the North' on facebook but it was great thanks DD. I know the preds are totally wrong but the respiratory consultant told me it was all they could use to try and reverse small airway damage. They just want to see if it helps. They don't think mtx or humira have caused the problem( been on them 8 years now) at the moment which is a relief as my RA is currently well controlled so pred was all he had. I've just spent 4 years losing 30kg and now have put on 4 kg in as many weeks. So it will not be a long term thing if I can help it. I threw out all my large sizes. Having said all that I have to say I'm having such a fabulous time and feel so good - even my osteoarthritis seems to have disappeared. So I will enjoy the holiday while it lasts even if I will come back down to a huge reality check.

Thanks for the link Sticky - such a responsible article which actually makes a lot of sense and sounds pretty similar to other lung conditions. Beats the one I read that told me the end was nigh!

I will just take it as it comes, like we do, and see what transpires.

Buka

PS Learned most definitely - never saddos

A need for info to help stop my Obliteration!

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