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First appointment at lung transplant centre.

Karenanne61 profile image

I have my first appointment on Wednesday at the Harefield. Can any of you wise people give me any idea what to expect? I have written down a few questions. We are going Tuesday and stopping in a b and b as the area is completely new to us. ( We live in Oxfordshire) Thank you.

43 Replies

Wishing you well Karenanne. Xxxx👍❤️

Karenanne61 profile image
Karenanne61 in reply to sassy59

Thankyou.

Damon1864 profile image
Damon1864Volunteer

Good luck hope all goes well. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Thankyou

Good luck for Wednesday hope everything goes well

Thankyou

Unfortunately cannot give you any suggestions. But I will be thinking about you

Karenanne61 profile image
Karenanne61 in reply to teddyd

Thankyou

Good Luck & hope it all goes well 🙂

Karenanne61 profile image
Karenanne61 in reply to Jane2005

Thankyou.

Hello Karenanne. It will likely be an explanation and discussion hopefully about the process and what you can expect and what what will happen next. I urge you to ask questions and bring a notebook to take notes. They may well mention statistics as well but don't let that worry you too much. Do ask about the medication you will need to be on for the rest of your life and the possible side effects as it is good to be prepared for this and it will be part of your life every single day. Ask about caregivers and what is expected of them. What physio therapy you may require beforehand if you are not physically fit. Possibly what therapy you require after transplant as some people need this too. What restrictions you will have as to food etc. How long the average wait time is and will you be due for a single or double transplant. Well there is actually tons to ask. Asking questions shows you have done your homework and they will take your candidacy seriously. Best wishes. 🙂

Karenanne61 profile image
Karenanne61 in reply to Caspiana

Thankyou Cas for your detailed answer, it's really helped. I would never have thought about restrictions after the op or physio etc. My list of questions is growing daily. ❤️

Caspiana profile image
Caspiana in reply to Karenanne61

Good. Show them you know your stuff and mean to go on. You will be a strong candidate. Best of luck. xx 🍀

Karenanne61 profile image
Karenanne61 in reply to Caspiana

Thankyou so much Cas, I really appreciate and value your input. I'm off to bed now so night night. (Though I think it's your morning!)

Hi karenanne Cas has experience of this and has given you good advice. I hope all goes well for you Take care x

Thankyou.

Hope all goes well for you xx

Karenanne61 profile image
Karenanne61 in reply to CDPO16

Thankyou.

Hope all goes well - we’ll all be rooting for you x

Thankyou.

Good luck for Wednesday, will be thinking of you. I am sure now that Caspiana has answered you will have added to your list and will be well armed x

Karenanne61 profile image
Karenanne61 in reply to Izb1

Thankyou. I hope there will be time to answer all our questions.

Sending best wishes good luck

Karenanne61 profile image
Karenanne61 in reply to Alice70

Thankyou.

All the best x

Karenanne61 profile image
Karenanne61 in reply to Patk1

Thankyou.

All best wishes. I can’t help but there are people here who have had the assessment and the operation.Love

Kate xxx.

Thankyou.

I had my first visit in 2017, however it was in the USA so I don't know if your experience will be comparable. As Caspiana indicated take a notepad and ask questions. Stateside the visit included testing ;a six minute walk, testing for FEV 1 levels etc. Don't be scared it's just the start of a possible journey and you can put it on hold (I did), or stop it at any time. I eventually had a Double Lung Transplant (Nov. 28th., 2020)and I am so glad I did. My life now is so much better ; a miracle. There are ,as Caspiana noted side effects from meds. and other restrictions post transplant, but for me it was more than worth it. But that is all down the road. Relax -- things will go well!

JCL,

Thankyou. The appointment letter didn't mention testing so now I'll be prepared just in case.

I can only wish you well & hope it goes well Much love & keep safe

Thankyou.

no probs

Loads of best wishes that all goes well. xxx💗💗🤞🤞🤞

Thankyou.

All the very best for tomoz karenanne61 x

Karenanne61 profile image
Karenanne61 in reply to Patk1

Thankyou.

Good luck for your appointment today.

Karenanne61 profile image
Karenanne61 in reply to Ergendl

Thankyou.

Ergendl profile image
Ergendl in reply to Karenanne61

How did it go?

Karenanne61 profile image
Karenanne61 in reply to Ergendl

Thankyou for asking. 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.

Ergendl profile image
Ergendl in reply to Karenanne61

Glad to hear they were taking a lot of care over you. Hoping you've had time to rest and recuperate after donating so many vials of blood.

Karenanne61 profile image
Karenanne61 in reply to Ergendl

Thankyou. I'm not sure how many cups of (decaff) tea it will take to replace that amount of blood.🙂

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