Lung Transplants

For issues related to specific conditions and disabilities.
My husband has been accepted on the lung transplant list at Freemann hospital, Newcastle. Has anyone else had experience of lung transplants and the waiting time?
Hello,
Not sure if you will see this reply as you posted almost a year ago.
My Mum is also waiting for a lung transplant. She is under Wythenshaw Hospital in Manchester, she has been waiting for 8 years.
That's a long time Caron. How is she copying, my husband was givin the 2 to 5 years prognosis 2 years ago. He is very thin, constantly breathless and tired but he is not on oxygen. He also has osteoporosis as a result of long term use of steriods. I am finding it very difficult to cope and do not feel I cannot give him the emotional support he needs. Actually I feel a bit angry and want to run away, but I can't cause I have 4 sons whom i love more than anything and they love their dad. How are you coping, are you your mum's carer.

Nuala
Morning Naula,

Freeemans hospital has a reputation of being the best in our area.I hope it lives up to it for you and your hubby.
My mam had her liver transplant there and the staff were great.

Good luck

x x x x
Yes, I have been back home for five years now looking after mum and working full time up until Janruary of this year. I gave up work to look after her full time. I know exactly how you feel, its so hard. I feel so guilty for finding so hard.
Mum is on oxygen 24 hours and also has osteoporosis. Up until about four months ago Mum has always been so positive but she has been really poorly with chest infections since Noember and has been into hospital three times. She is really fed up (understandably). Mum is also very thin and is unable to do anything.
Do you have any support? How old are your sons?
My father is at home with us but he had a heart bypass last year and is recovering from this still. I have an older sister who lives an hour away and helps out if I want to go away but she has three children of her own.
Thanks Caron and Rosemary for your support. I have 4 sons aged 17, 15, 13 and 6, I also work full time as I am the main earner now. My husband and I are both from big families (typically Irish!) My sisters are very supportive of me and his family of him. But we have always had a difficult marriage and now I don't know what to do. It was easier when he was working cause although we had difficulties we also got on with our lives raising the boys in a reasonably happy home (I have always been good at hiding things, biting my tounge and getting on with it). Now I know what it must be like when couples reach retirement. The constant presence is irritating, and it is as if he spends all his time watching me and critising cause he has very little else to focus on. Why can't he just enjoy the kids and leave me alone to get on with the practicalities of running a busy home. Sorry to be so negative but I have reached a stage where I need to make a decision and I am scared, the old saying the truth hurts! Am I really protecting the boys by staying in an unhappy mirrage? Am I being fair to Vincent? How can I be truthful when he is at such a low in his health? Do I have to risk so many people's feelings just because I'm not happy?
There is one thing that i am very clear about and that is i do not love him, but i am willing to support him through this if he will accept that i can only ever be his friend.

Nuala

Nuala
Thanks Caron and Rosemary for your support. I have 4 sons aged 17, 15, 13 and 6, I also work full time as I am the main earner now. My husband and I are both from big families (typically Irish!) My sisters are very supportive of me and his family of him. But we have always had a difficult marriage and now I don't know what to do. It was easier when he was working cause although we had difficulties we also got on with our lives raising the boys in a reasonably happy home (I have always been good at hiding things, biting my tounge and getting on with it). Now I know what it must be like when couples reach retirement. The constant presence is irritating, and it is as if he spends all his time watching me and critising cause he has very little else to focus on. Why can't he just enjoy the kids and leave me alone to get on with the practicalities of running a busy home. Sorry to be so negative but I have reached a stage where I need to make a decision and I am scared, the old saying the truth hurts! Am I really protecting the boys by staying in an unhappy mirrage? Am I being fair to Vincent? How can I be truthful when he is at such a low in his health? Do I have to risk so many people's feelings just because I'm not happy?
There is one thing that i am very clear about and that is i do not love him, but i am willing to support him through this if he will accept that i can only ever be his friend.

Nuala

Nuala
Hi Nuala,
Sorry to hear that things are so tough for you. Is there a member of your family that you trust enough to confide in?
With regards to the kids, as hard as it is they will grow up and leave. It might be worth trying to talk to your husband about how you feel, you need to be happy too.

Take care
Caron
Thanks Caron. My family all tell me the same, you need to tell him the truth, and I will. I have taken some time off over Easter so I plan to do stuff with the kids and sort stuff out once and for all. Although i do not love him I do not hate him either. I will let you know how I get on. Have a great Easter and thanks.

Nuala
Thanks Caron. My family all tell me the same, you need to tell him the truth, and I will. I have taken some time off over Easter so I plan to do stuff with the kids and sort stuff out once and for all. Although i do not love him I do not hate him either. I will let you know how I get on. Have a great Easter and thanks.

Nuala
Hope all goes o.k. Glad to hear you have taken some time off, sounds like you need it.
Please do let me know.
Have a good Easter
Hi Caron
Well the holidays are over and I'm back to work. Kinda glad cause sometimes it is easier to go to work than be at home with lots of family demands, but it was good. Did a lot of thinking and have decided that I have to stop being selfish and just get on with it. We all have to deal with what life throws at us. We all can feel sorry for ourselves and thats OK so long as we don't dwell on it and I think thats what I was doing. The kids need me and their Dad, and Vincent needs me to look after him and the kids. How is your mum, it must be hard being a full time career since you gave up work. I find going to work a bit of a release from the pressures of chronic illness, I don't know if I could face it all day. Do you have any other family support, when do you get a break? Can you leave your Mum alone for any lenght of time to go shopping and stuff? Vincent is pretty stable at the moment but he has a rattly cough which in the past has been a sign of infection, but he says he is OK, he doesn't talk about it much, I will say do you think you need an antibiotic and he'll say no, until it gets to bad then it's 2 or 3 weeks of antibiotics. 3 of my boys have had birthdays recently and my freezer has broken, thats the practicle stuff I have to deal with. Careers NI are going to visit us soon to do a benifit audit, but I don't think we are intitled to much cause of my working hours and salary. Apparently if i reduce my hours we may get some help but I don't want to. We'll wait and see.

Well I hope you are well and you and your Mum are as happy as one can be considering the situation. I am going to try and concentrate on the possitive things in my life and smile more!!

Nuala