Worried about my man!

[Rachelmcc80]

Good evening, I’m new here and I just need a sounding board. My 51 year old partner has been having problems since nov 17, and although not diagnosed formally had been told that he has ILD and that has caused other serious complications (autoimmune haemolytic anaemia) and is now on oxygen at home in the evenings.

Due to the progression of his illness he is now having to give up work (lorry driver) and consider disability payments. He has undergone all the tests for a lung transplant and is an ideal candidate for the prOcedure (never smoked, non drinker, healthy lifestyle, not too overweight, has attended every appointment etc) and has passed all the usual tests (bone density, angiogram, lung function, bloods, CT, etc) and is rapidly deteriorating. We have contacted the consultant and asked for a closer appointment and he is due to attend oxygen assessment next week for ambulatory supply.

His oximeter is regularly below 80, and I am seriously worried about him. He is so strong and is currently still working full time despite his poor condition.

I am after advice on anyone who has experienced similar prOblems. Is it worth me paying to see a consultant privately (would this speed the process up?). I am worried about how we will manage financially... being a young family and running a family business on top, advice is very basic and sources of info is limited. .... I guess I just need a direction that I can push in so that I can support him in the best way possible.... thanks in advance x

[sassy59]

Welcome Rachelmcc80 to this very caring forum. It might be worth ringing the BLF helpline on 03000 030 555 Monday to Friday during office hours. They have great people who may be able to offer advice and help to you.

It seems as if your partner is trying to stay strong but really struggling. I hope he gets all the help he needs very soon. Xxxx

[Rachelmcc80 in reply to sassy59]

Thanks so much sassy59 xx. It’s so tough not knowing how to help, or what to do for the best. If I got him a private appointment could this speed the process up at all, or is it best to wait until May when his next appointment is due? (This has been brought forward as the next appointment arranged was October!..... I honestly don’t think he could wait that long).

It’s just frustrating . Thank you for your kindness

[sassy59 in reply to Rachelmcc80]

Private would probably speed things up yes but you shouldn’t have to do that.

Ring the BLF helpline tomorrow and see what they say.

Thinking of you. Xxxxx

[Rachelmcc80]

Much appreciated, thank you very much xxx

[Caspiana]

Hello Rachelmcc80 .

I'm sorry about your predicament. I would definitely try to speed things up. But I know it's expensive to go privately. Is there no way to do this without having to go down that route? Is he already listed for transplant or still waiting on the final word? In the U.K. very much like here in Japan there Is a shortage of organs. So the wait could be sometime. The sooner he gets listed the better. His oxygen levels are too low. That reading of 80, is that at rest of when active? I am guessing that is without oxygen? If he is still working and not using oxygen at work this could be a dangerous situation for him especially since he drives.

I know it's overwhelming at the moment. The good news is he is a good candidate and strong enough for transplant. Now it's important to keep strong and fit as for as possible as the procedure is a rigorous one.

Please do keep us updated. Thinking of you both.

Best wishes.

Cas xx 🌞🐞🌸

[Rachelmcc80 in reply to Caspiana]

Hi Cas, thanks you for your reply. He is not yet listed for a transplant, which is frustrating considering all the tests are done, I understand that the final decision is made by a board of staff not just a single person-so I’m not sure how to Persue this ?

The low stats are my major concern, particularly as these seem to have deteriorated rapidly over the past few weeks. I am 100% sure that he will be given ambulatory oxygen next week (his readings are at 80 or often lower even when resting) and of course he then uses his home based oxygen, but more critically I’m worried about him when he’s dropping so low when being physical at work.

I’ve just bought a treadmill in the hope that this will help us both! At least when he stops working there is the option to exercise at home, and thinking positively it will help him to recover after a transplant!

Thanks again Cass, I will keep you updated, I appreciate your advice.

All the best Rach xx