Harefield Lung Transplant

[mary1956]

Hi, I am on the lung transplant list at QE Hospital Birmingham, but surgery there is still suspended and will be until June at the earliest. I am therefore going to be seen at Harefield in the hope I can go on their list. I’ve been on Birmingham’s list since July, but with no transplants since January there has been no hope of getting the call. This has been disappointing. Similarly it took 7 months to be seen by Birmingham after my Consultant referred me; again because of Covid. Are there others on this site on Birmingham’s transplant list who are now being referred and seen elsewhere. I was thrilled to get a call from Harefield on the day they received the referral letter, and hope this is a positive sign.

[sassy59]

Hi Mary, I just want to wish you well and hope you do get on the transplant list at Harefield very soon. Waiting is difficult enough without covid causing more problems. Take care xxxx

[mary1956 in reply to sassy59]

Thanks Sassy, I do have renewed hope. I know it’s still a long shot, but at least there’s a chance

[Carnival567]

I hope you have some progress soon, such a nerve wracking time for you. All the best xx

[mary1956 in reply to Carnival567]

Thank you, it’s been really hard as the delays because of Covid are difficult. So many people affected directly and indirectly.

[Dons-2]

Hi Mary

I just wanted to say good luck with getting on Harefield’s list.

I had my lung transplant there 2 and a half years ago and the doctors and nurses there are amazing - so you’ll be in good hands.

Take care

Donna xx

[mary1956 in reply to Dons-2]

Thanks for the reply, so lovely to hear from somebody who has had a successful transplant

[Twinsmum10]

Hi Mary I am on the list for a double lung transplant at the QE and due to covid have also been suspended until June at the earliest I took a call and they offered me a referral to papworth but they said it would mean coming off their list and restarting the process and that could take up to 4months and there was no guarantee after all that Papworth would list me. did you have to go through the 3 day assesment again? I chose to wait with Birmingham because they said when they opened up I would automatically be referred back to Birmingham anyway..it's good your back on the list again it gives hope something we haven't had for a while good luck x

[Caspiana in reply to Twinsmum10]

Hello 👋😊 Was thinking of you the other day. Hoping you are doing okay. xx 💕

[Twinsmum10 in reply to Caspiana]

Aw thankyou ☺️ i haven't been on much getting over a chest infection and a cracked rib I'm doing ok now just waiting for news about my transplant . anyway how are you hope you are keeping well x

[Caspiana in reply to Twinsmum10]

Ouch! You've been through the works. 😥 I do not come often here at the moment. So much going on. But I occasionally drop in. Are you still able to be active on the list with the broken rib and infection? Take good care. xx 🌿

[Twinsmum10 in reply to Caspiana]

Yes thankfully the infection is now clear and a ct scan has shown the rib is healing so I can stay on the list although I am currently suspended off it as they are only doing emergency transplants at the hospital I am listed at.It has been good to hear from you again take care x

[mary1956 in reply to Twinsmum10]

Hi, Birmingham said that by the time I heard from London that Birmingham might be up and running, but I decided to try Harefield anyway. It did take Birmingham 3 weeks to do the referral but Harefield then rang me the day they received the letter. I saw them 10 days later. I was there for a day, but only needed loads of bloods, Chest X Ray, CT and angiogram, I met the team who were all great. That was 10 days ago, and I went on their list last night. They also said I might be able to stay on both lists; although I think that is unlikely.

I’m going to Birmingham on Tuesday so hope to get some news as to when they are restarting.

If I have to make a choice I’m tempted to stay with Harefield.

Good luck, I hope Birmingham restart soon.

[Twinsmum10 in reply to mary1956]

Hi I was also told that by the time I heard Birmingham would likely be up and running which is why I decided to stay now seeing this I'm beginning to regret my decision.Its very good that Harefield have responded so quick.Do you still have to be seen by Birmingham for tracker clinic? I'm not due back on clinic now till the end of June so hopefully they will be up and running by then