GETTING NERVOUS, HAREFIELD TESTS 3 WEEKS TIME!!

morning everyone, i'm getting very nervous about my 2 day tests on 11 april in harefield hospital. Its not the tests really its the results. I will find out within that week if I can go on the transplant list, or sit back and die. funny thing is right now I don't know which I want!! I want to live, but after a transplant its no plain sailing, they told me "its like changing one disease for another" maybe i'm better off just putting up with what I got, and let nature take its course, they think maybe a few years. Ihave though lost 1 stone, which is more than they wanted, I am off the tramadol, I am down to 5mg pred, god do I notice that!!! and I started pulmonary rehab 4 weeks ago. so I have done what they wanted to enable me to go on the list, we will have to see what the tests reveal and what the drs recommend. transplant, no transplant, we will see. hope you all have a good weekend, i'm going to sit in bed and listen to my audio books all weekend!!! I cant think of anything nicer. all the best MM. xxx

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  • Hi montymillie, you have a really tough decision to make, and I am sure you will decide what you think is best for you. I'm sure will have plenty of good support. Good luck with the tests, and keep listening, my books cheer me up no end. :-) janx

  • thanks grannyjan for replying, in a way thankfully its not in my hands, and I will defnetly carry on with my audio books!! just on kindle unlimited getting another one!!!

    all the best MM. xx

  • Hi Montymillie,

    Don't know a lot about lung transplants but hopefully you will be eligible to go on the list. You are young enough to benefit, I'm sure. You are very brave and have a good attitude. I have severe COPD and am on 1 litre oxygen, and I moan!

    Wishing you all the very best.

    Hang on in there.

    Malinka

  • hi malinka thanks for the message I do try to be positive it makes me feel better. and we all are allowed to have a moan its natural.

    all my best MM. xxx

  • Literally a life-changing decision. I wish you the strength and courage to make the best one for you.

    Take care and enjoy your books.

    Tee X

  • thanks very much 1008, I just ordered another one off kindle unlimited!! cant wait to listen to it, a medicial thriller, my fav. all my best MM. xx

  • Good luck Montymillie ! I'm crossing my fingers and toes in hopes of you getting the right result.

  • hi billiejean-2 thanks for responding to my post and wishing me the best results, many thanks MM. xx

  • Good luck with this, montymillie. It must be really difficult to know what you want to do - they don't hand out crystal balls when they share out these illnesses, do they?

    Remember that they're so good and so experienced at Harefield and I'm sure they'll give you lots of time and support so you can decide which is the right choice for you.

    Hope you're really enjoying your weekend and can put making decisions to the back of your mind for a bit.

    Take care.

    Sue x

  • hi sue , thanks for replying I do hope to get a lot more info when staying in at harefield about the after effects of transplants, some people are still so ill they cant work and theres so much `body` after care involved it sounds like an auwful lot of work/trouble, I just don't know! but on a nice note yes I am having a lovely weekend with my 2 dogs in bed, lisening to my books, love it!! all my best MM. xx

  • Montymillie, I don't have a clue about what you are going through, I don't know if you should hold back or jumps in but, if you go for the transplant can you imagine them all sat around the pearly gates chuntering amount themselves because your timekeeping turns out to match that of my local number nineteen bus (always late!).

    Think id go for the transplant just to keep that image in my mind ūüėä

    My friend, (seriously) whatever your decision I just know that every person I've read about on this site will be there with you!

    Good luck, best wishes and ... medical thrillers??? Oh well, each to there own!

  • thanks y-not, its really nice so many people have replied to my post. maybe it will come to me when I,ve done the tests!!

    oh the medicial thrillers, tend to be forensic/pathologist styled murder thrillers!! very interesting reading I find!! but as you said each to there own, i'm sure some will think "what how creepy" ha ha!!

    thanks again MM. xx

  • this must be a really stressful time Montymillie. I hope everything turns out how you choose. Love Margaret x

  • hi Margaret, thanks for the post. I hope the next few weeks fly by. my best regards MM. xx

  • Good luck with your tests and your decision. I'll be thinking about you and praying for you.

  • thanks tbeth, its appreciated, all my best MM. xx

  • Why do you leave yourself just two options? Either make it onto the transplant list or sit back and die, you say. There are other options but you have to work for them. If you make the transplant list you could be waiting for > years for a suitable set of lungs and the transplant team will expect more from you than lying in bed listening to audio books. They'll expect you to play your part and be as fit as you can be to qualify or you'll be taken off the list.

    Those who are not eligible for transplant are getting up and exercising. Even if we can only walk five or ten steps to start with we're doing it. We're taking responsibility for our own health and trying to improve it. We're not lying in bed listening to audio books while we wait to die. As many options as we have are also available to you.

  • hi laVerita, my post has annoyed you and is obvious how you have answered it. I use this forum to say things I cant say to my family as me having a fatal lung disease they get very upset and worry about me. some times I need to get things out other wise they will just go around in my head. I do my PR (pulmonary rehab) 5 days a week, 4 hours in hospital and 3 times a week at home, which takes me about 1 and half hours a day. I did say in my post I did PR maybe you don't know of it. at the weekend its lovely not to have to do it. I have to do PR 5 times a week my psyiotherapist has told me and that's what I do. me saying waiting to die, sounds very dramatic I should have worded it better it sounds very negative and i'm usually very positive. I am dieing but arnt we all. I cant really leave the house for enjoyment, as I am on 10LPM of oxygen at rest, and a bottle of oxygen lasts me half an hour. so I just do hospital appointments and PR appointments and the dentist. I need this forum to be able to say what I need, as I do not see people being house bound and do not want to stress my family out by letting know painfull truths. all the best MM.

  • I understand, I really do because I have a terminal lung disease too. I wasn't angry at your words, it was my frustration that you seemed to be giving up instead of fighting it. I share many of your frustrations. Yes I know about PR and you're doing a lot of it. Good for you and I hope everything works out well for you.

  • Well answered young lady. Just the fighting spirit you will need when you make the Tx list.

    Will (Australia)

  • Wishing you well in whatever you decide! I hope the appointment goes well and you enjoy PR, it's amazing how it can increase your strength and stamina ūüėĀ huff xxx

  • hi thanks for the message, the PR is really good, but really tireing, I do it 4 hours a week in hospital and 3 times a week at home. I have noticed it a lot harder to do and have to do less, since harefield have lowered me to just 5mg pred. but you gotta do what you gotta do. all the best MM. xxx

  • hello I've not been in community long was feeling really sorry for myself thinking why me etc.just read your post and realise i'm doing ok compared to others on here.

    you will make the right desion which is best for you.

    glad to see you are enjoying reading your thrillers nothing like a good book

    and your dogs are on the bed with you I love dogs too they are so loving

    take care helenx

  • hi Helen, thanks for responding, I am really glad you did, i'm sorry you feel so bad about things. its easy to let them get out balance if you don't talk about them. sharing things on this forum really helps me and you get great advice or help, some times the kind words people say make such a difference to how I feel. I am enjoying my book at the moment and the dogs, a ginger Chihuahua and a white toy poodle are crashed out on the bed as usual!! theres a photo of them on my profile page, i'm so lucky there little darlings and so careing believe it or not. wishing you all the best MM. xx

  • thanks milly you and the dogs take carex

  • Hi, I had my assessment approximately 3 years ago, it was a full m.o.t. And fortunately I got through it. I was told the same as you, keep your strength up etc etc. It was 2 years ago that I had my transplant by which time I was very week and using oxygen so it was touch and go whether I was strong enough for the transplant. I was lucky it went ahead and whilst recovery was a little slow I now have a wonderful life and so thankful to everybody who gave me this opportunity. Personally I think given the opportunity you should go for it, c.o.p.d. Does not get better! As my consultant told me from the beginning the only guarantee in life is that you are going to die!

    Good luck whichever you decide. Sue

  • G'day Sue

    Great positive post.

    We should hear more post Tx stories,even to erase the myth about lung transplantation.

    The Alfred hospital in Melbourne (where my wife Susan (IPF) is on the Tx list) did 81 lung Tx's in 2015 with 80 survival.

    This year over 25 all successful.

    There is hope especially thru Faith.

    Will (Australia)

  • I.l be thinking of you, let me know how you get on. My angiogram was very interesting, you get to watch it. They found I have only 3 arteries instead of 4, must have been like that all my life but it wasn.t a problem.

  • Ooohh!! that's unusual, I bet you were surprised!!¬† I will do a post on how it goes when i'm back on the 13th april.¬† thanks for your support seyre, love martine¬† xxx

  • hi seyre, thanks for your message of hope. just what I needed!! I am so pleased your life is wonderful and you feel so great now, nice one!! you never know it might be me writing this sort of message to someone one day. thanks again, all my best MM. xxx

  • G'day ¬†MM

    Thinking of you

    Good luck for next week

    Will (Australia)

  • morning will, how you¬† and the wife doing?¬† well I hope.¬† its a gorgeous day here, light blue sky and SUN!! it is a bit cool though!!¬† thanks for the good vibes, as the 11th approaches i'm getting a bit excited, I think.¬† no dred at the moment , so feeling wonderful and positive, just waiting for Microsoft to phone me at 10.30, I managed to mess up my photo file opener, I changed it, stupid stupid me now I can`t

     open my pictures to see 'em or send 'em.

    have a lovely weekend, MM  xxx

  • You have nothing to dread MM, If it is anything like Susan ¬†went thru it will be a "piece of cake".

    I do not know the procedure over there, but when the assessment was completed we went home and then were called back 3 weeks later(after the Tx team had met and discussed the results), received confirmation that the assessment went well and then informed that Susan had to have an angeogram before we could sign the acceptance document (panic stations) but the staff assured us that this was the "Norm"

    Keep your positive attitude and remember you are entering into a phase of your journey where many IPF sufferers dream of attaining.

    You are in our prayers

    Will & Susan

  • so tru will, harefield phoned me yesterday to see how I was, I said fine and I received the booklet and have started to read it it has a lot of info in it about transplants and lungs, so I will be a lot more knowable after the week end!!¬† thanks for your support will I really do appreciate it, love martine¬† xxx

  • Martine. You are an inspiration to me. Gerald x

  • hi Gerald, what a beautiful compliment, thank you so much, but I don't whats inspirational about me,¬† but am very glad I do some thing for you!!¬† have a great week end, martine¬† xxx

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