Confused

[Dion50]

I have pf for the last 6 and half Yr its really confusing me or maybe I'm in denial my dr says I'm in the end stages and put me on 2.5ml of morphine, I havnt had a infection for ages now touch wood,I'm on oxygen wise 6lt and 2lt at rest ,I can't really read my breathing test but I think my last one was 57% and I have another test next week ,I don't feel as though I'm dying so I'm thinking it will just all of a sudden hit me ,I'm well aware my like is deteriorated massively, tired easily,not so much of an appetite I was told I would be sent to Newcastle hospital for a lung transplant assessment but I got the letter I need to loose weight which I have only a stone but I also have bipolar and the Dr at Newcastle said I'd needs a assessment for my mental health which I get but like iv said its the Dr's tell you this that and the other then build your hopes up and they don't think it plays with your mind in the it the years iv been poorly ,I came out off a long term relationship,was undergoing test for cancer twice, diagnosed with pf,rumathoyd arthritis mctd,death of my father and a few other stuff so is this just me or does anyone feel like I do I always thought maybe I might meet someone else now my kids have grown but not to be least my dad will be waiting on the other side❤

[Caspiana]

Hello Dion,

Goodness you've been through an awful lot. 😒 Without knowing your actual spirometry results it's hard to know what stage of disease you are at. This, you should bring up with your doctor. And sort it out. It's encouraging that you don't get many infections because that will just weaken your lungs further. I think you also need to discuss why you are on morphine. Especially if you don't feel you need it.

I have had a lung transplant and as far as I know you cannot be on any strong pain killers let alone opioids if you intend to be listed. So do ask about it. As you are finding out, getting listed for a transplant is not a simple thing. Some people are told they must lose / gain a certain amount of weight, some must have heart valves inserted, some must have extensive dental work, or go to pulmonary rehabilitation and improve on fitness levels, I had to correct a deviated septum and it was not pleasant at all. But I would say if you want to go ahead with transplant and the evaluation , you MUST advocate for yourself. Get back on the phone and chase it up. If they think you aren't really interested in pursuing it they will concentrate on someone who is, because the organ pool is quite limited in the U.K. same as Japan. As of March this year there are two hundred and seventeen people waiting for a lung transplant in England and the average waiting time is eighteen months. A good number of those waiting will unfortunately, not make it to the operating table. So please do not leave your fate in their hands. Of course your mental state will come into play as well. But that will be up to the evaluation team to decide.

I encourage you not to think of "the other side " just yet. You dad will still be there to welcome you even if it is twenty years from now. I hope the very best for you Dion. Life is not over until we stop trying.

Best wishes to you.

Cas xx 🌿

[helen1946 in reply to Caspiana]

what a lovely calming reply

[Caspiana in reply to helen1946]

💜💜

[Dion50 in reply to Caspiana]

Thankyou for your lovely reply ❤

[Caspiana in reply to Dion50]

You are welcome. 😄

[Mavary in reply to Caspiana]

That was so beautifully said. It’s a scary thing to have done but you are proof that it can work and yes I believe your loved ones will be waiting on the other side for us. Xx

[Mavary]

Hi Dion. I’m so sorry that you have this awful disease. I lost my Husband from IPF nearly eight years ago and now I think I may have PF. It’s not been confirmed but I have got interstitial lungs which I believe is PF. I’m hoping I will outlive it before it gets really bad. I see you are already on oxygen. Have they given you anything that can help prolong the illness. Like Perfenidone or Nintenadab. It may help to talk to your Consultant and tell them what you want instead of them making the decisions. It can’t do any harm to tell them. They can either say yes or no. Tell them how they are messing with your mind. I hope that helps. X

[Caspiana in reply to Mavary]

*HUG* ❤️

[Mavary in reply to Caspiana]

I never knew you had a lung transplant. Well done you. Xx

[Caspiana in reply to Mavary]

Two years ago ☺️ thank you Mavary. xx

[Damon1864 Volunteer]

What a beautiful and encouraging reply from Cas. Please chase it up as Cas advised and keep us updated. Have a wonderful day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Walkwalkwalk]

Dion. The reply from Caspiana is so very good. I am much older than you and not in the proposed transplant group. However, my consultant recently made a decision that I am in end stage and offered Oramorph as a medication. I considered it, spoke with my GP and declined as I use strategies to work with my shortness of breath in order not to be distressed by it. So like Cas I do suggest that you discuss it again if you feel that you don’t need it. Remember that our clinicians classify us because of the numbers we present not the life we lead. Those numbers are probably important when transplant is proposed and again do listen to Caspiana about advocating for yourself. She has been there and knows what she is talking about. Can you share your concerns with a friend or family member for support in this next stage?

My very best wishes, Grace

[Patk1 in reply to Walkwalkwalk]

It's great that u have strategies to deal with shortness of breath.perhaps it may be helpful for others to share how u cope.i use controlled pursed lip breathing xx

[P-i-n-k]

Will be thinking of you.J ❤

[Thinkhealthy]

Just want to send big virtual hugs - keep looking after yourself and getting the best out of every day.Xx