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Lung transplant clinic appointment

Karenanne61 profile image

Thankyou for all your good wishes. Well my first visit to Harefield was quite overwhelming. I only learnt as we were traveling down on Tuesday that I wld be having 'some' tests. Some! A lung function test, ecg, chest xray, blood pressure and sats, urine test and I couldn't count the number of vials of blood! There were more but the doctor wanted to see me so they've had to wait. Still, I've had a good mot.😂 After these and a chat with the doctor and transplant co ordinator we have decided, for now, to remain as I am, with frequent monitoring. Palliative care are being contacted to help me with the cough. Possibly oramorph but I did have an allergy to morphine following my last surgery. Weirdly my fev1 and sats were both better than they have ever been! Harefield, when compared to my local hospitals the Churchill and JR in Oxford, was quite bijou.

41 Replies
Damon1864 profile image
Damon1864Volunteer

Hope everything goes well for you, please keep us updated. Have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Thankyou . Have a good day.

Thank you for the update Karenanne. I have read from others undergoing this assessment that they leave no stone unturned. You are at least on their books now and I hope that they can find something to ease your cough.

Karenanne61 profile image
Karenanne61 in reply to CDPO16

Yes, it's like being in a holding pattern, I'm on their rader and being monitored. I'm obsessed by planes just now as we're flying to Ibiza on Tuesday, I'm so excited!

CDPO16 profile image
CDPO16 in reply to Karenanne61

I hope that you have a smooth transfer through the airport and a lovely holiday xx

Karenanne61 profile image
Karenanne61 in reply to CDPO16

Oh so do I. We are still waiting to hear if the assistance we have requested will be available.

CDPO16 profile image
CDPO16 in reply to Karenanne61

Good luck xx

Ask again at the airport if it's not forthcoming. My daughter did that last year for me because I hadn't been able to manage it on the Easijet web site. Made a big difference.

Thankyou, husband had phone call earlier today to discuss what assistance I need. We've arranged a wheel chair from check in to the plane. And they are aware that I can manage the steps to the plane 'in my own time'. I.e. lots of coughing and stopping. Off to see Giffords circus now so more excitement!

You're really living it up, setting a good example to all of us. At Stanstead last year the staff were so anxious to look after me well that they even forgot/ omitted to put my bulging rucksack in the hand luggage tester thing.( A bonus.) They also shunted us to the front of the queue to board the plane. The airport was much less of a hassle that way,so I hope you get the same treatment. xxx

I've learnt the very hard way to grab with both hands any chance at joy that comes my way. Be it a fabulous holiday in Ibiza with my amazing husband or watching a fox play in our garden. Your trip sounds hassle free, I hope mine will be the same.

You’ve certainly been thoroughly tested and looked after. Wishing you well for the future. Xxxx

Karenanne61 profile image
Karenanne61 in reply to sassy59

I have! So much blood!

When I was at RBH the phlebotomist couldn’t believe how many phials she was asked to fill. I think it was eight.

I didn't count!

Caspiana profile image
Caspiana in reply to Karenanne61

The first assesment it is about a dozen to fifteen. 🙂👋

Karenanne61 profile image
Karenanne61 in reply to Caspiana

I can believe that! The phlebotomist/nurse was amazing, I never felt a thing and no bruising!

That all sounds positive, wishing all the best for the future. Have a great holiday xxx

Thankyou.

Wow… Though to be honest I am not surprised. They really have to check everything for such major surgery. I am intrigued by your sats and FEV1. I believe that stress and the resultant adrenaline rush “normalises” my results. I am not very SOB when I see doctors whereas at home I am really struggling. I have tried to find out a bit more about the effects of stress but I think it is an area that is under-researched. All the best

Kate xxxx

That's very interesting about sats and fev. I could understand one being differn but not two. I visit two hospitals for lf tests, depending where my consultant is, and the results never vary.

pleased you’ve now seen good Consultant, enjoy holiday, best wishes,Jeanx

All the very best wishes 😊❤️

Thankyou

This all sounds positive Karenanne61 and glad to hear that your fev1 and sats are good it all helps to cheer us up. Have a fab holiday and enjoy yourself x

Karenanne61 profile image
Karenanne61 in reply to Izb1

Thankyou

Well you certainly did have an MOT so pleased they are going to monitor everything. Take care x

Karenanne61 profile image
Karenanne61 in reply to Otto11

Thankyou

Take care. Thanks for the update x

Thankyou

That all sounds so positive Karen. My best wishes for the follow up. Grace

Thankyou Grace.

Good luck Kareanne. All the best.🤞

Thankyou

I'm glad you are now on their radar and hope this means you get the optimum treatment from now on. Hope you have a really lovely holiday.

Thankyou.

This is very good news. This means you still have wiggle room. I am very pleased you don't have to be listed yet. I'm happy for you Karen. xx ♥️

Karenanne61 profile image
Karenanne61 in reply to Caspiana

Thankyou. I like that, 'wiggle room', I'm going to use that.🙂

my doctor doesnt seem to think im ready for a transplant yet I really hope everything goes really well I ll be thinking of you

Thankyou.

youre welcome

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