Chronic Disease Nurse

[BrianTaylor]

Afternoon everyone. Hope you are all enjoying the sunshine.

Does anyone else have a Chronic Disease Nurse? I feel special 😛 Just had my first visit. She is lovely. She was very thorough and patient. She had a good knowledge of COPD, but rather strangely seemed to know very little about IPF.

[Wellyboot0_0]

I think most people have very little knowledge of IPF

Glad your nurse was lovely, the ones that my dad have had, have all been lovely too.

The nurses we had at The Papworth were so kind and understanding. She was very patient too I think her nane was Kate. She did know a lot about the medication and also about the condition.

Are they giving you the medication Brian?

[BrianTaylor in reply to Wellyboot0_0]

Hello! Hope you are doing well 😊

I’m not sure what they are going to do with me but I have an appointment with my consultant on the 14th May so am hoping to find out soon! 😘

[soulboy118 in reply to BrianTaylor]

Good luck on the 14th brian

[BrianTaylor in reply to soulboy118]

Thanks SB 😎

[sassy59]

No Pete has nobody like that Brian but the health centre are as helpful as they can be. He’s still wheezy and choking so trying to get more Ciprofloxacin.

You are very special so glad you’re getting good treatment. Take care xxxx 😘

[BrianTaylor in reply to sassy59]

Hi Carole, hope you are both as well as can be expected. The nurse is like a district nurse? She seemed to think I was in good shape, which is good! I think it’s like when you call a mechanic out ‘well every time I turn the engine over it makes a clicking sound’ and then it just doesn’t! You feel like a fraud 🤣 Although I have to confess, since being diagnosed with IPF I have felt surprisingly good! No sign of a wheeze or cough other than the odd occasion. I think it’s because I flooded my body with antibiotics and steroids! Very strange 🤔😂 xx

[sassy59 in reply to BrianTaylor]

Ah I see, good to have someone take an interest in you Brian.

Pete says he feels ok but still bringing up lots of mucus. Waiting for doctor to ring but did get to hospital today for chest x-ray. Let’s see what that shows.

I’m really pleased you’re feeling good and long may that last. Take care xxx 🥰😘

[BrianTaylor in reply to sassy59]

Fingers crossed! Why don’t you ask at the gp if a chronic Disease Nurse can visit Pete? Has Pete been on a course of PR? Maybe this might help him? Xx

[sassy59 in reply to BrianTaylor]

Will check tomorrow about the nurse as Pete has a 9.30 appointment to see the practice paramedic. No to PR as Pete was deemed unsuitable. He did go but no good. Typical! 🙄

You take care Brian xxxx😘

[BrianTaylor in reply to sassy59]

Hope it goes well tomorrow. Let me know how he gets on. Such a shame about the PR though! Mind you, I’m assuming it’s helpful from what others have said on here! I was due a course but it came through for the last six week school holiday and i didn’t want to drag them there twice a week right through the holidays. Since then I’ve headed nothing so will be asking my consultant to organise it.

Take care and talk again soon xx

[sassy59 in reply to BrianTaylor]

Thanks Brian, I’ll let you know how things go. Hope you get PR sorted as it is meant to be good.

Talk soon. Xxxx

[Hacienda in reply to sassy59]

Hi Carole & Pete, Sorry Brian to impose on your Post. Hope all's well with Pete Carole. Love n Hugs Dear Friend. xxxx

[sassy59 in reply to Hacienda]

Thank you dear Carolina. Fingers crossed Pete will improve very soon. It’s just dragging on a bit. He feels ok in himself though.

You take care. Xxxx

[BrianTaylor in reply to Hacienda]

Any time Tango lady 😉😊 x

[Johnsel in reply to sassy59]

Hope all goes well with Pete today Carole x

[Carnival567]

I have an excellent respiratory nurse, although we did have a rather sticky start together. I have found her very helpful and encouraging. From a few things she has said she knows something about IPF, but of course most of her work is with COPD and other lung diseases which are quite common in this former mining region. I have bronchiectasis and obliterative bronchiolitis and have never smoked. You are very unlucky to have IPF. I know there is a support group for IPF at the Bristol Lung Institute, is there anything like that at the hospital you attend? All the best xx

[BrianTaylor in reply to Carnival567]

Thank you for your reply Carnival567. Glad you are finding your Respiratory nurse helpful, long may that continue! Not sure about support groups local to me, but I have found the PF Trust Facebook group and have been posting there recently 😊😊

[Carnival567 in reply to BrianTaylor]

I hope the Facebook page helps you. I belong to an American site called Inspire: Living with Pulmonary Fibrosis, and one chap who seems quite ill has just travelled from Arizona to Southern Chile and back, by air, viewing all sorts of places on the way. Braver than me, I have to say, but it is a very encouraging site, although lung transplant seems more common than here, even for older people. I hope you keep as well as possible xxx

[13cats-lives]

Hi Brian,

It’s only me again to sat that my husband has had a Community Matron, 2x a week for at least 14 months. Yes, I agree, you are both very special to have this specialist care! And fortunate! They have so much empathy and time, we have come to think of one as extended family! We appreciate her So much!

They are like getting a second chance at life! I don’t know about you, but she is the only person that my husband feel’s understands his high and lows. No more COPD yearly drags..you will be monitored closely, regularly from now on. Make no mistake, they can be brutally honest about your illness, but then isn’t that what you need? She convinced my husband that C.P.R would Not be in his best interest, and he has come to terms with it and signed the dreaded D.N.R. form. No doctor could do that! Good luck, your in good hands. Take care! 👍👏

[sukee52]

My chronic disease nurse is lovely too. She did say that as a lifelong chronic bronchitic that I knew more about the disease than she did... nevertheless she is still good, and always supportive.

[BrianTaylor in reply to sukee52]

Thank you Sukee. Hopefully we will see more awareness of all lung conditions in the NHS soon.

[Izb1]

Hi Brian, well I am glad that this nurse made you feel special, thats how we should all feel. Now that you have found somebody who understands you and Im sure will know something about your condition, or perhaps she will learn along the way, its good to know she will be on your side to help you through. The fact that she was thorough will give you confindence, all good news x

[BrianTaylor in reply to Izb1]

Thank you IZB1. Hope you have a nice Easter 😊

[Izb1 in reply to BrianTaylor]

Hey, you too Brian.

[Whitechinchilla]

Hi there Brian. That’s wonderful to hear that you have your own dedicated nurse. Isn’t our NHS just brilliant.

I hope you find her visits helpful and educational too and she contributes to your ongoing health. Good wishes.

That’s said I have the highest praise possible for the Respiratory clinic that I am now assigned to and the staff are amazing, approachable and so informed and straight talking, which is great.

[BrianTaylor in reply to Whitechinchilla]

Thank you Whitechinchilla. Sadly our NHS gets a lot of negative attention, but this isn’t my experience of it at all. I’ve had nothing but compassion and care from them 😊

[Whitechinchilla in reply to BrianTaylor]

How wonderful. I trust that continues for you.

It has also been my experience that they are simply the best.

Good wishes

[simbanine]

Hi Brian

You sound just like me talking. I'm in Purbeck and mine is exactly the same - had my 5th visit yesterday and she has helped in so many ways. Hope your ongoing experiences mirror mine.

Kind regards, Mike

[BrianTaylor in reply to simbanine]

Thanks Mike. Here’s hoping! All the best 😎😊