Adult clinic

[Pokermon]

All went well at my first adult clinic this morning. Very nice lady Dr she explained everything very clearly saying as my illness is a very rare one they don't really know the best way to treat it but as iam well at moment she will just carry on and see how I go. Very reasurring. Lol

[corriena]

Im glad your dr is nice. Just remember they may not have another patient like you so you must lead the care. tell them what you need and what outcome you want. Hopefully you can work together to keep you well 🤞😷

[Hidden]

Glad all went well at your first adult clinic. I suspect as with all lung issues if the condition becomes unstable for more than a couple of months continuous GPs generally refer back to the specialist respiratory consultant. Sometimes we have to request this when our symptoms are persistently unstable. If you are ever in any doubt don't hesitate to contact the BLF helpline.

blf.org.uk/support-for-you/...

Here's to your continued stablility healthwise.

🌼👍

BK

[CDPO16]

That will be quite a relief for you, Pokermon. Glad that you are well at the moment.

[Hidden]

At least she is nice and approachable. Make sure that you contact her if you need to.xx

[Damon1864 Volunteer]

Pleased you are doing well, have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Karenanne61]

Pleased the doctor was nice, it makes all the difference.

[Katinka46]

So pleased for you. Phew...Lots of love

Kate xxx

[sassy59]

Well that sounded very positive Pokermon and I hope you stay well. Sending lots of good wishes to you. Take care xxx

[skischool]

Pokermon,for just about every rare disease/illness or Zebra affliction as our dear Kate refers to them there is normaly someone ,somewhere who has something very similar or even the same.Thankfully the all powerful wonder web thingy can often link these people up so perhaps a bit of careful detective work(sort of extra homework) and you may find that person or a support site that can assist you in the future when seeking treatment regimes that may be suitable for you.

In the meantime enjoy that relative well being and the new team that will be looking after you as i am sure they will do their best.

Ski's and Scruff's

🙃😻 x

[Pokermon in reply to skischool]

That's a good idea might try doing that have plenty of time as was told not to go back to college until after second jab.

[skischool in reply to Pokermon]

Good on you,avoid the cranks and weirdo's and be careful with who you talk to and you having nothing to lose,there is probably a support site out there somewhere in the world brim full of useful information.🙃

[cofdrop-UK]

You’ve made my day Pokermon. It was a big step for you and I am so pleased you had a happy consultation. I am glad your consultant was very nice. Please check in with her if you have any struggles and she should then get a plan in place. Think ‘what would my Mum do/ask now’ 😉. I know she is your rock. Good on ya Pokermaon.

With love

Cx

[madonbrew]

Hey that’s great Pokermon! Really glad she was a nice dr and one who explained stuff! I hope you were fine getting there too! Could your mum go in the end?

[Pokermon in reply to madonbrew]

Yea mum came in with me. Mum helped out a bit I find it hard to explain how it effects me but mum said I was very good and expect it will get easier for me.

[madonbrew in reply to Pokermon]

That’s good! That’s what mums are for!! They help us out when things feel tricky and encourage us in our ability to do stuff! 🤗

[Hidden]

It makes all the difference when you know and trust your doctor.

[Carnival567]

That’s really encouraging for you.

[johnderby]

Great new Pokermon. A nice Doctor makes all the difference. Don't be afraid to ask her to explain anything you don't understand and good luck in finding a support site as Ski suggested. Keep safe. John

[Ergendl]

It makes such a difference when you feel the doctor relates to you.

[judes]

I was thrilled to hear things went well for you and your mum was able to go with you.

Having a doctor who you can relate to is a wonderful thing I’ve met some who I could cheerfully slap!! I have a rare blood disorder that some docs know very little about they try and change things that have worked well for years.

Here’s to continuing good health

Love and hugs

Jude

Xx

[watergazer]

Hopefully you and your new doctor can work together well You sound like you're in a good place at the mo Take care x

[Dedalus]

Glad you liked your new doctor and your mind has been put at rest. Well done 🥰🥰

[MoyB]

I'm pleased it went ok for you and you like the new doctor. Now they have met you perhaps they will also be doing some research to find out ways of helping you and if you can find other people who share your condition (as Skis suggested) you might find you have a winning combination.

When I was a child, I felt unable to talk to my doctor as whenever he asked a question, my mum answered for me, often contradicting me and making me feel silly. As an adult, it's taken me a long time to have the confidence to work WITH them, instead of just accepting what they say. Consultants are no longer 'Gods' in my eyes. They are human beings with a lot of experience and knowledge but they can't know everything. If you hear of something you think would help you, don't be afraid to mention it to them. If something helps you, it might also help others. Think of that.

Thank you for letting us know how you got on. It is a big change for you. I hope it continues to be a positive one. xx Moy

[Alberta56]

That sounds good. So glad.