Transplant screening

[Lazerbrain]

So I have medium lung function caused by pulmonary sarcoid years ago and worried I won't pass the lung function test for liver transplant. Anyone squeeze by and get on the list with lung issues? TVM

[AyrshireK]

Sorry no one has replied. Fingers crossed your assessment goes ok. The breathing test is quite thorough at assessment as they won't want to operate unless they are confident they can get you through the operation and recovery safely. The issue is you are intubated and on oxygen for a very lengthy spell. My hubby was intubated from 10pm on Sunday to around 10am on Tuesday as he struggled with self-breathing post op. Others are intubated for longer and this can lead to fluid build up in the lungs.

All you can do is go through assessment and see how you go and I do wish you all the very best.

Katie

[QuietButBold]

(My apology in advance; if you had already thought of this).

I wondered; if anyone via Sarcoidosis UK might perhaps know if there are any safe and sensible things they could suggest - which you could try to build into your routine to aid giving yourself the best chance of being in peak-for-you respiratory health as you prepare for the liver transplant lung function test.

Although I don't have pulmonary sarcoid knowledge, I do have a collection of long term issues (in addition to liver disease) and I find for myself it can be helpful, now and again, to:

a) check if "the thinking" and guidance in those other arenas has been updated recently, and

b) I will admit; that over the decades: I can become prone to settling into a "works, enough, for me ...most of the time" habit, rut or routine ...which is worth me double-checking every so often ...just in case I have either strayed a bit far from the optimal behaviour, or, perhaps hadn't realised my lived experience could now benefit from a bit of a professional refresher.

Sometimes I have found you can be fortunate to find one of your other clinical Teams might have a relevant fresh (or temporary measure) suggestion (if they are updated about your new challenge in the parallel health sphere). Something they might not have perhaps considered appropriate to mention before.

Other times, you might at least be reassured that, yes, you are indeed correct in your understanding, that you really are already doing your utmost, diligent, absolute best under the circumstances.

My best wishes for your lung function test.

[Yellowsydney]

Hi, and can't help you directly but if you use Facebook please feel free to join our friendly and knowledgeable Facebook page called liver transplant support uk, if you are in uk, thousands of people that have been in your situation, we will support you through assessment, transplant and beyond

Hilary xx

[CJenks]

Sarcoid can go in to spontaneous remission, so the results you got last time may not be the results you get this time. Are you less short of breath now, or more? Also medium lung function doesn't tell you anything and is not how it would be described in any lung function clinic (I'm a clinical respiratory physiologist).

I wouldn't dwell on your previous results.

[Lazerbrain in reply to CJenks]

Yes, I coined "medium" myself. Have c50% function. And in remission. Its never got any worse.

[CJenks in reply to Lazerbrain]

It's the anaesthetists that generally worry about lung function, it used to be that if something called your fev1 was below one litre, they wouldn't anaesthetise.

It's not about intubation as they'd do that with relatively tiny lung volumes in other situations.

They may want to look at something called your transfer factor too, but I don't know what their actual concerns are. I'll see if I can corner a gastroenterologist in work, or failing that, I'll ask at my next appointment on 11th march.

[Lazerbrain in reply to CJenks]

V kind of you

[Shadowwithinuk]

how many years ago? If it was awhile ago you should be ok, but any doubts you should ask your transplant coordinator about it

[Lazerbrain in reply to Shadowwithinuk]

pulmonary sarcoid 2013, after digging up bamboo, think i inhaled the pollen deeply. Been in remission since then after a massive sustained dose of steroids bopped it on the head. But it did some damage sadly.

[retwos]

They do alot of tests as you probably already know I'm sorry but I don't know about your condition so I can't really say much except all the best on your journey and I would have thought there will be better people more informed than me x

[Petrina_gmfc]

Sorry I don't but I can ask a friend you has a transplant if you want to

[Lazerbrain in reply to Petrina_gmfc]

TVM

[Petrina_gmfc in reply to Lazerbrain]

What do you mean what TVM

[Lazerbrain]

TVM = Thank you very much

[Shadowwithinuk]

I think you should be ok sounds like the doctor will do a more thorough test just to be sure but after 12 years I think you would be ok, the test is more about how you will be during the operation.