Double lung transplant patients advice

[Concernedunc]

Hi looking for any advice on a double lung transplant my neice needs in the near future from people that have had this operation please

[Caspiana]

Hello Concernedunc .

I am sorry to hear about your niece. Are you in the U.K? If so, the lung transplant centre your niece is registered at may have a support group for patients and families. How old is your niece?

I am pre transplant waiting for a single lung. I joined a group on Facebook especially for pre and post lung transplant patients. It is predominantly American, not based in the U.K. but the information is relevant. It's called "Lung Transplantation: Taking flight with new life support group. You'd have to request to join by sending them a message explaining why you want to join.

A word of caution: Some of the posts can be very distressing. There are many uplifting too, but many people who post there are undergoing difficulties. So, at times it can make for very disheartening reading. The important thing is to remember that everyone's story is different, and it does not mean any of those unfortunate circumstances will arise in your niece's case. If she is very young, it might be prudent for you or her parents to join instead of her. It really depends on how much information she can take without feeling overwhelmed. There are many caretakers there too.

I really hope you and your family can find support. Wishing you and your niece all the best.

Cas xx 🌿🍃

[Concernedunc in reply to Caspiana]

Hi Cas thanks for your reply, I hope all goes well for you in the times to come. My neice is 42 and lost both her parents. Luckily she has a wanderful loving supporting husband. I will look into your advice although it does sound a bit scary.

[Caspiana in reply to Concernedunc]

Hi again.

It is scary, no two ways about it. But funnily enough when you have little alternative, scary become a manageable. 😊

[Hacienda in reply to Caspiana]

So True my Transplant Buddy. Love ya . XXXXXX

[Caspiana in reply to Hacienda]

Good morning Carolina. xx 😘😘😘

[Hacienda]

Morning my Love, Like Cas I too am waiting for a Double Transplant( over 2 years ). Information is a very Important Tool for your Niece. I am with two Local Forums for Transplant. The QE Birmingham (where I will have my Trx) and The Freeman in Newcastle where my Friends have had theirs. Just type in "Transplant B.Ham" & "Transplant Freeman" or if you know the Hospital where your Niece is being Treated, type the same for that Hospital. Good Luck to you & Your Niece...Love n Hugs. xxx

[sibkev]

oioi sry to hear this anything you need to know plz ask me i cld write all day and not answer one thing you need to know i had mine 11 03 2016 at th Q E birmingham main thing id say is walk walk walk stay as fit as pos makes life smother when you start the recovery

[Hacienda in reply to sibkev]

Good Morning sibkev, I missed your post after your Lung Transplant. I /We would love to know more, I hope you don't mind me asking you. I too am waiting to go into QE, for Double Transplant. How long where you waiting on the List? I am on their Forum aswell as Freeman. I have two good friends who had theirs in QE and one in Freeman. I keep myself Fit.ish with 2 Execise classes weekly and the gym, wear a fitbit every day. It is just the waiting that gets to me, I have to talk to myself to stay strong and not let anxiety take over. My hubby is Great as is the family, But to be Truthful No one knows truthfully what we are going through. I look forward to hearing from you. Love n Hugs. Carolina XXXX

[sibkev in reply to Hacienda]

hi was on list from oct 2015 i had 3 offers before this one but they failed tests in the end i was down to about a month to go cld not even eat . transplant is a life changer but you have to work for it ie after the op is when it starts i got up to 5 mile a day walking but ive had a few probs this year that has set me back a little 2 infections and a bleed in my colon not to do with tplant the bleed it was polips you cant have this op and not go into qe from time to time i was out 2 days ago and all fine now just got to start my fitness again look just ask all and ill answer so many time ive wrote and felt like no one was there cus of no reply so ask away . there is so much to tell oh and QE IS THE BIZZ best in world your care is just up there . i can go on and on oh yeah i was so quick on list cus my blood group is a common as s--- this time it worked for me

[Hacienda in reply to sibkev]

Thank you for replying so quickly, I have just got back from having my flu jab. The QE is Great, I go every 3/4 months Tracking appointments. My blood group is ok, it is the Antibodies that are the Problem which means I need to have a 100% match, not had 1 call in over 2 years waiting. I do instigate Donation by Sharing everything with BLF and getting involved with Funding through my Breathe Easy Group. Hubby just had his head shaved, we have raised about £500. I have a friend who had her Transplant at QE just 2 months after we both had our Assessments together, I am so happy for her that she has also found a new lease of life. Will keep in touch, so My Transplant Buddy Caspiana can read all the comments. have a Lovely day, Love n Hugs. Carolina xxxxx

[JollyRancher11]

Neighbor/friend had a double Lung transplant last August and is doing well. Had a few infections along the way but nothing major. Had to make many trips to the Medical University for check-ups.

Reply

[ExTravis]

Hi Concernedunc, thank you for posting this. I joined for the same reason. I’m only at the very first tests so don’t know what’s ahead or even if I’ll be suitable. Grateful to Caspiana for such a full answer.