need a friend

hi...ive just found this site today and hoping someone will message me.....i have copd and bronchiectasis and will be going to harefield in September for an assessment for a possible lung transplant...

im 49 a single mum and im struggling to make sense of whats happening in my in south wales and would love to chat to someone who understands whats going on with me because it drives me crazy when people ask me if im ok and i say no and their reply to that is whats wrong !!!!!...

60 Replies

  • mandy hiya and nice of you to join us, your in the right place , listen other members will be along shortly so stay on, there are members what had a lung transplant and some members what are waiting for a transplant, keep looking in wishing you all the best xxx

  • oh i would love to chat to someone who has had a transplant as i was told about this in january and its only been that past 2 months that ive actually started to read about the transplants.....i think my head is still buried in the sand.......thank you x

  • Porsche is waiting for a transplant read the link xx hope it works now tho.

  • Porche was the first face i saw when i logged on here i will try and chat with her......thank you x

  • this I hope lol is the members posting on her transplant xx read the link and stay on line

  • this member as had a transplant mandy and im sure when she looks in will tell you herself , any qs you ask,x read the link,

  • Hello Mandy - I am relatively new to the group so am sending a welcome to you and urging you to stay on and regularly check in...I have learned so muchon her, also it's nice to know I am part of a large group of people who understand how I actually feel. It's difficult to explain to friends, so I don't even try any more. I have emphysema and keep getting infections, and this past 15 months has been lousy, but I am learning to cope better and trying to stay positive. Very good luck with your transplant. Take care :)

  • Yes i dont bother telling people how i feel anymore i just say fine........thanks for the message x

  • Hi mandy yer i to have bronchitiasas along with other ailments to name a few

    like twiceshy3 says there are lots of other members with same condition going threw and been there done that.

    You have defo landed at right site for help and surport

  • thanks for the reply........i think i should have done something like this a long time ago but if im honest there is still a part of me that dosnt accept whats happening which dosnt achieve anything

  • Think we was all like that at one point .. But comes a time when inabition is nothing to health concern's

    As far as familys my own included .. Like to pretend alls fine and if it helps thats ok BUT as suffer i do like to talk to other suffers

    Like thay say a problem shared is problem halfed

    What i will say is you do need to stay active

    I was quite mater a fact about excersice till it come to excreting myself

    Is quite a wake up call one myself is trying to adress.

    but you can take comfort in knowing your not alone and no mater what time of day night there is allways someone on here

  • oh what a lovely message thank you......i know i need to stay active but its so hard when you cant breathe after taking a couple of trying to do what i can on good days they are just few and far between at the moment and its one o the things that drives me crazy about this illness its never the same so its hard to plan

  • Hi mandy thanks yer tottaly know what u mean yer i had to sit down quite a few times at shops even getting up my stairs was a joke

    3 times i toppled down the stairs so on bad days i crawl :))

    Yer is defo unstable condition to say the least .. Trick is to cough gunk up

    I was talking to my doc how one flem ball or lung plaque can effect my lungs so much .. asked him how much good lung must i have Anyway he said nothing

    Well theres a surprise but yer excersise and not to get to out of breath.

    There was a point i could not lift my hands to shave and thats is scary .. But like that popular 70s tune i will survive and yep am still here

    So no mater how grim its looks you must look for positives and manage the lows when it comes to your condition

    Cheers wishing you well thanks for reply :)

  • yeah i learnt fast how raising your arms is hard work........why havent you got a stairlift ive just had one put in at no cost to me

  • Yer my x gp painted pic of me being fine to dwp so its been a fight

    He's trying to cover is ass .. as i tried doing him

    Nearly killed me he's inaction

    Yer told me i cant have lung reduction surgary as to dangerous or cam to see whats going on

    Yer its been a fight but cant let it get you down a just look foward to spring summer xmas etc

    Luckly a tend to forget stuff now and tbats a plus as dont get stressed

    Yep have to be positive cant let it drag us down is bad enough disease

  • i hold my gp surgery responsible for how bad i am so i know your frustration there but thats disgusting what they have done to you and i hope you are working to get that sorted out because your missing out on loads of things your entitled too...its outrageous x

  • Did try BUT have to wait for better medical everdance

    To be honest i give em run for the money when i can remember

    You just get sick of the fight but do always defend my corner

  • you shouldnt have to be fighting assuming you appealed the decision you should just get your consultant to write to them

  • Yer he told me he would tell them but dwp atos have never wrote to them .. yep av been up appel roads and back down .. Lot wiser but not better off

    Yep by all accounts dwp atos say its up to me to surlpy information and to make sure its recived

    Now a just get dwp or atos to phone for ambulance for me as allways feel ill when have had run ins with them

  • seems to me your being fobbed off......all i sent to atos was one letter from my consultant that was it..........if i were you i would get cab involved

  • Did all that then on day of hearing CAB could not Attend

    Even when asbestos solicators right to my docs asking them simple thing like do i have pulmary fibrosis my lung doc just egnors them .. Is shocking but there fource is stronger than mine .. Well for time being anyway

    Yer my x gp even said o your the one with cancer and i have'nt even sat down .. well i said not as far as i know i dont

    But you think about stuff like that well hope av not

  • change your doctor he is obviously really a brick layer

  • Yer i did after i tried getting redress .. if you walk away befour makes it lot harder .. yep i had police getting everdance from offices Doc never expected that .. Yep thats what she gets for pre judging patiants based on appearance

  • Hi Mandy,& welcome to the forum! I'm sure you will find others in the same boat as yourself.

    Sorry I'm not able to advise you about transplants,but just wanted to acknowledge your post.

    Stay strong darling,big hugs,Wendells xxx

  • staying strong is the bit im finding hardest...I try to dig deep some days to stay emotionally well but do often find i have no fight there...

  • Hello Mandy, great you've found this site, I'm sure you will make lots of good friends here! All the very best with your up and coming operation, keep us all updated with your news!! :) huff xxxx

  • ive had lots of messages...this is something i needed even more than i thought....thank you x

  • im not even sure if i will be offered the transplant....i have an assessment on the 12th of september at harefield so will know more then..not knowing whats going on is hard to deal with and i know there are some things even they wont be able to answer...if im honest i dont even know how i feel about having a transplant apart from scared

  • Hi Mandy, glad you found this forum, lm not able to give info but l am here to support. Harefield? Is that the hospital in bucks?

    Take care.x

  • yeah it is....ive just booked a room there for my appointment and it was 45 pound !!!! i didnt expect that

  • Hi Mandy

    I am also in South Wales with bronchiectasis and another lung infection. Haven't been told I need a lung transplant just that I will be on antibiotics for the rest of my life. It is scary. I am happy to chat on Facebook or email or even phone.

    Best wishes


  • oh i was hoping to find someone local....add me on facebook..amanda willis

  • Have done - not sure if it's the right Amanda?

  • i will log on and see but if its a healthy looking woman with red hair then thats me...thats how i use to look im a bit washed out now

  • Ok! Kay

  • Hi Kay...ive just been on facebook and have no new friend requests so think you may have wrong one.....Amanda in Barry and have red hair on my pic if you can find me i can search for you if you want to leave me your name x

  • Hi Kay are you around.......

    it dosnt matter about facebook i rarely go on it anyway

    how long have you been using this site ...i have been told off....yikes !!!

  • what do you mean please with "told off"?

  • yeah....someone said i was being patronising but it was just something and nothing just miss understanding what i wrote.....its all good

  • yeah just saw....glad all sorted.xx

  • Sorry, I have had a friend staying, just taken her to the station. I have only been reading a few posts for about a month. I can't find another person with your name on FB. Mine is Kay church. Would you prefer email?

  • oh that must have been nice for you both......i have to be honest ive withdrawn from my friends and i know its wrong but i just felt pressured all the time with them saying i should make the effort to do one thing or another when its nothing to do with the effort its the fact that i cant do what they suggest they just dont get it x

  • I am lucky, at the moment I can get around and do things but the future is very scary.

  • I sister is always telling me not to worry about the future just concentrate on the day but its easy for her to say long ago were you diagnosed

  • I was wrongly diagnosed with asthma for five years - then the doc thought it was TB and treated me for that for three months and finally bronchiectasis just over two years ago. It is in my head nearly all the time, very difficult to forget about it.

  • OH MY GOD !!!!!!!!!!! how the hell can that happen in this day and can he treat you for tb without a diagnosis are you sure your doc isnt a brick im assuming you have had a scan to have been diagnosed with bronchi !! im gob smacked at some of the gp stories i hear

  • TB and bronchi are very similar and once I had bronchoscopy it was sorted. Took a couple of months though.

    Have you got your overnight stay sorted now?

  • i went on harefield website and they have a gust house on the grounds so i rang them and booked and paid for the night there for me and my sister but i havnt had a letter of confirmation so i think i best give them a ring today to double check....they charge £45 for the room and i was shocked at that as i hadnt even thought about money but i think its expensive

  • Yes, you should phone. It's a bit pricey but maybe very nice.

  • Hi Mandy so sorry for your troubles, everyone will do their best for you here, I do have COPD newly diagnosed but not other disease you mentioned, do you have support from family and friends, escepically with the prospect of lung transplant, I know its so difficult trying to make sense out of life when you are going through the mill like this, take one step at a time, try to keep as healthy as you can, I really hope you have some kind of support though, and we will help here if we can all the best Angse

  • i dont have much support apart from my daughter who is 21 and lives with me...she is a good kid but i feel so bad that she has this worry on her shoulder.......yeah i have started to take complan to help me put wight on as i dont eat much and your right i do one step at a time day by day its the only way im getting through it and sometimes its even hour by hour

  • Hi Mandy6513, welcome to the site . Hope all goes well at Harefield, that's a big operation to undertake so you have all my best wishes.x

  • i have never had so much as a stitch so the thought of that operation scares me to death i dont even know if i can have one yet or even if i will say yes

  • You are young mandy and if the operation is a way back to health then I would be tempted to say yes even though it's big surgery. You would probably have a long wait so maybe they may have another option for you when you see them at Harefield. every best wish x

  • yeah i agree...i will be glad when ive been just to have some answers its awful being in this limbo i think most of us deal with issues much better when we know what we are dealing with.......thanks for your kind words

  • hi mandy.have the same.c.o.p.d. and bronch.yes know the feeling.i am look okay etc, if we had bandages we would get more sympathy.belive in yourself.

    strength and courage....nelliex

  • At a birthday party for my great niece a few weeks ago a man in his 60s walked up to me as i was sitting on oxygen and said to my face that i didnt look as bad as everyone was saying he expected me to look much worse..!!!!! if it wasnt for the fact he is round my family a lot i would have told him what i thought of his ignorant rude and stupid often shocked at the things people say to me

    Another thing that drives me crazy and i dont know if this happens to you is that everyone wants to tell me about their aches and pains !!!! my neighbour popped in last week and was moaning about her sore hands !!!! i wish to god i only had sore hands

  • Nothing made me madder than when folk said how well my hubby looked and then told us all their woes. My hubby was on 10litres oxygen a minute, and couldnt get down stairs.

    I believe l'm a short bus ride away from Harefield, so if you do need to have operation, private message me. I dont know how to and if you want daytime visits and support, l'm happy to come and see you. Take care of you and bless your daughter. Also my hubby used to say people mean well, but sometimes l wish l had some ear plugs.

  • people dont always mean well and should think before they say anything.........thank you so much for your kind thing i didnt think of in all this was money and was shocked to find harefield charge 45 pound per night to sleep at the guest house and you dont even get a breakfast so good job i dont eat first thing on a morning !!! ha are things for you now

  • Hi I am waiting for a lung transplant I have been on the list for a year now.I know how you feel I have the same conditions as you,but i am 61 now and i am under whyamshore hospital in manchester .If you need any one to tark to message me and may be we can help each worry about the assessment.

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