anyone been told they need to go onto... - Lung Conditions C...
anyone been told they need to go onto transplant list in the near future ?
Theres a few on the forum so I imagine that some one will be along soon. I think that Dall will be the best person Try sending him a pm hes very friendly and very helpfull too Best of luck if this has happened to you too Best wishes Julie
Me! I have 6kgs to go before I can be assessed. But I was told 2 years ago that in all likelihood I would need a transplant. Had a few of the tests, echocardiogram and bone density etc. it's quite scary - I keep chopping and changing my mind as to whether I want one. That said being told was odd - I felt I was in the middle of a tornado, I felt quite calm about it whist my family were in turmoil. It's frightening and uplifting because you are getting a chance at a second bite at life. Something others don't get.
But it's not easy
Marie x
thanks Marie,i'm also all for it one minute and scared the next its a very troublesome time,it would be lovely to actually breath once again and to run or swim or even just go for a walk further than 50yds with out being scared of not making it back with out having a attack ,
This site is a god send to me it really helps to talk to people who really know what your going through,thanks Marie and good luck,Dave.
Have an appointment with the local Transplant Team on 10 July!!!! Martin
good luck and all best wishes keep us up to date,take care
id be interested to hear your views on this appointment martin,obviously not personal details but a overall view
I was accessed for a lung transplant 3 years ago and the tests are very detailed it took about 4 to 5 weeks to complete with a 4 day stay in hospital but I was found to have slightly blocked heart arteries so I couldn't have a transplant. Good luck if you decide to have one xxx
I’ve been told by my pulmonologist I need to get on the lung transplant list as well. However, I already know I have too many other things wrong to be accepted. So I opted not to blow the dough. It’s very expensive to go through the assessment. And I’m certain I would be told no. Also, it’s not an easy decision to make as there’s no guarantee on the outcome. It’s no walk in the park having a transplant. My thoughts only!
Hi Soulboy
I'm not wating for a transplant, I'm eight years over the age limit, but I thought I would wish you well. Go for it if you get the chance.
Best regards, Bobby
thanks bobby i'm considering it but its a very frightening prospect ,obviously i cant go on like this but i've read that there is only a 3-5 yr life expectancy after transplant its a very big decision my specialist said that im expected to have a longer life span than 3-5yrs as i am at the moment so it all boils down to quality verses longevity
This is the exact reasoning I keep having. At the moment I live a very full life. I work, I go to the football, I exercise, I go out, I travel. I think I am too fit to have a transplant which as you say will increase my life expectancy for 3-5 years if I am lucky, along with the trauma of actually being on the list, waiting for the call, and then the operation itself along with recuperation. If I lose the weight, am assessed and am suitable then I have a feeling I will just be 'watch and wait'. its hard to think about giving up what I have at the moment for the odds they offer you of getting through and then survival. I am not tryign to sound ungrateful - of course I am sure I will change my mind when I become ill enough but I sometimes think people assume that its like having your appendice out and you are fixed - when really you aren't.
Sorry - helps to write this down as few people understand my reticence when it comes down actually thinking about it.
Marie
x
hi wat age are u,
Hi
Not sure if this is addressed to me or soullboy. I am 42
Hi hidden hope your ok ,i was just going over my old posts and came across this thread
im 55 .
My friend had a lung transplant 12 years ago and is doing great. Goes for regular checks and on medication but breaths easy and never looked back
Thanks lindakenno ,looking at the official survival rates can be grusome reading ,hi by the way
Hi, yes i was assessed had all the tests but due to high antibody load was unable to be listed
hi few on hear will help u with that.how do u get on it.is it ur gp u do it through him.take care
It was my gp who sent me to consultant ,my wife passed away so i gave up on tbe transplant assesment but have restarted the process, i have a referral to wythenshaw hospital in manchester
i fell at the first hurdle due to osteoporosis this was at the pre asessment and looking back i am glad that the decision was taken away from me it is a very hard choice to make if you have a half decent quality of life anway
Hi
Bilateral transplant in Feb this year. Feeling great, not looking back. I go to the gym 3 times a week. i do a lot of walking, including a 7.5 mile walk around our local reservoir. I do most things around the house, and have no problem shopping. I am self employed and have been in touch with my one remaining client all the time, and even managed a billable half-hour in hospital! I regularly have "wonderment" moments when I realise I am doing something I never thought to do again. The first of these was enjoying the smell of perfume, another was standing to clean my teeth, between post op 5 and 10 days the physio brought along a step, and I could do it - flights and flights of stairs! I was in hospital a little over 2 weeks, but some are in for double that time or longer.
My understanding is that half the people get through five years and things get easier. At the time I was assessed I was given 2 - 4 years, by the time I had the transplant I do not think I had long. I was 60 at the time of the op. I have been very lucky so far with no rejection and no infection, and I do my part in staying that way by obeying all the rules, and observing restrictions. Visits back to the hospital are now at 3 weekly intervals, and there are changes to drugs with reductions to maintenance level. At the clinics are many who are over 5 years. The care is excellent.
You have nothing to lose by going through assessment, and surely it is best before any further deterioration. You will meet others like yourself , and possibly be introduced to post op patients. If you get through, you can then decide, and the wait will begin. Only a small proportion of patients get through assessment, and even then one can be off and on the list due to problems.
Whatever you do, please check up on those statistics with the help of the transplant team! They like questions!
Good luck and best wishes.
EJ
thanks for the reply Ej,you have made the whole process seem less daunting ,I'm glad that your enjoying life once again ,and I will ask my specialist when the process is or can begin,nothing ventured nothing gained.,As you know this illness slowly takes your life and its pleasures away until your not yourself anymore,you almost become the illness .As you said your even enjoying perfume once again ,once again thanks,take care and stay healthy.Dave.
hi josieneg had mine at the Harefield also xx
Hi, I was accepted to go on the transplant list last August, I have had one false alarm but still waiting. Up to 3 years ago I was quite active but the last 12 months I have deteriorated rapidly and although I feel healthy I cannot do anything without getting out of breath. Any doubts I had about going ahead with the transplant were resolved when I heard from eejay who I note has also answered your question. As in all serious operations there are risks but I do feel your time spans are rather negative and improving all the time. Good luck with your decision. Everything in life is a risk and as my consultant said to me the only guarantee in life is that we are going to die! Food for thought. Susie xx
