Hello everyone, hope your all ok and coping with self isolating. I haven't posted for a long time so I thought I should reconnect with my friends on here. Got turned down for transplant as Birmingham said I wouldn't survive the op. I'm at end stage, have 5 fractures of my spine which I went all the way to Swansea to see orthopaedic surgeon who said I need plates and screws but again got told that I'm to high risk of surviving the op and also I could end up being paralysed. Then I went to see my gp who found a rattle in the left lung so had a chest x Ray. Within 2 days had a hospital letter to go for a ct scan. They discovered atelectasis which is part of left lung deflated but they also discovered a thickening of my stomach lining and I had to have a blood test which showed slightly raised levels of stomach cancer. I have a care package to be arranged on Thursday when social services visit and give me a price of care so that's me at the moment. Had organ failure in November but I bounced back after 3 weeks in hospital. Thankyou if you read this and best wishes to you all
Julie x
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jules45
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Hi Jules! I admire your resilience and bravery in the face of this string of medical complexities afflicting you.
It must be very hard processing so much in such a short time, but then you seem to have handled it stoically with your head held up high. You are an inspiration to me and probably many others with nagging medical issues. Keep on fighting !
Jeqe 2000.
My Dearest Julie
I have just come across your message and would be lying to myself if I said I wasn't a little concerned with the numerous medical conditions your now trying to cope and come to terms with! My first question is, are you currently alone as you've written your message in the middle of the night?
I know there's not much I can say or offer as comfort other than you have my friendship through your times ahead, my pm line is always open.
No one knows anything at all about what's going to happen. I would probably not make big plans, but don't let it stop you from taking joy, esp. in small things. x
I've got to make a new will and decide who's having what., not wishing to sound morbid but its a practical job that needs doing. My back garden each summer has been full of flowers in pots but this year I'm not able to water them so no pots. I have my car which I'll use after isolation. Had a discussion with my liver nurse to say my legs aren't working and its because my liver has been taking protein from leg muscles so I've filled my fridge with high protein foods
Gosh, what a lot you have on your plate, I have HCC started with Tumours in the Liver then spread t the Lymph in my abdomen tummy and around the Liver of course diagnosis is terminal, I did try Sorefenib recently but no go I'm afraid. I am from Wales like yourself I live alone but now in a very pretty village in Sussex, Are you in the country Jules? It would be nice if at some time you would like to drop me a line, just to say Hello!! it really would break up the day a little as like so many others I am still in lockdown I have another 6wks or so to go. I wish you all the best, and stay as well as you can Kind regards,
oh Julie I am so sad to see your post, you have been so supportive to me through various issues and always gave me hope and helped me make sense of things. I am sending you the biggest hug possible. K
Hello Julie. What a terrible combination of problems to have. I'm end stage too and spent 6 weeks at Bronglais Hospital last autumn with jaundice and second bout of severe ascites. I feel lucky to "only" have that compared to some others. Your spirit seems strong and I hope that helps you. You're in my thoughts. All Best Wishes, Sally
Hello Sally, nice to meet you, did I read that you were in Somerset? what a beautiful place to be, I am in Sussex and I love here just a country girl at heart, sorry to hear about your probs, dear me, mine have been ongoing now for 5years Jan-Feb just gone. I am lucky that I do have a palliative nurse and a hospice close at hand so IF/when anything should occur help is at hand. Even though I have had enough time to digest the idea I still cannot accept it. Anyway I live alone and sometimes it is a bit difficult not to have anyone to share the worry of it all with, but hay I am sure I am not alone, many people are in the same situation, sorry if I have gone on a bit I am not usually this downbeat, maybe because it is raining and a bit miserable outside and of course the lockdown thing kinda makes me a bit jumpy. I hope we will speak soon take care.
Thank you for your kind reply Paderico. I am doing OK but concerned that I never get a reply from the hospital nurse when I ask a brief question. Also, I have so far failed to get shopping arrangements sorted- told I'm not on the list. Someone else in the household does the supermarket shop, but it still scares me.
I am so sorry to hear about your situation too, and hope you can go on-line to chat with people you know. Sussex must be lovely too- I've only ever been once, but have a friend in the South Downs on the Hants side. Lovely rolling greenery-I find that therapeutic in itself. All my best wishes to you too.
Hi there Sally, that is a bit unfair, I have a vulnerable person's slot with Tesco. and regarding my CSN I must admit they are never very good at answering call's but I think they are very thin on the ground and their work load is very heavy. My hospital was/is Kings College London, as you can imagine it is a very long way from where I live so it was never a pleasure attending procedures and appointments. I don't know if they are going to keep me on there, my palliative thinks I will be referred back to my local hospital Who Knows???? At present I am not on any medication, well apart from Morphine and I must admit not a lot of that, O I have plenty my dear Palliative Nurse sees to all that but so far so good, it must be nice for you to have company, someone to have dinner with and such like. Sally thank you so much for your reply I hope we will speak again soon, and I do hope your pain is minimal. All my very best wishes and I do hope you can get thing's sorted out.
Paderico. x.
Hi Jules,
Its lovely to hear from you again.
We are sorry to read what a tough time you have been through and hope that you will get support from the members here again.
Please remember that our nurse led helpline is also open Monday to Friday 10am to 3pm on 0800 652 7330, we would be happy to have a chat, you are not alone.
Hi Julie, seriously gutted for you. I feel like we've been on the journey with you and I am so sorry things are going this way. Stay strong. Rooting for you.
I concur with Katie, you were there for me when I joined this forum, what a more than difficult journey it's been for you! You're a warm caring woman, you helped me. I know you have love and support around you. Sending you lots of love and strength...,always.
So sorry to hear this juile! You have helped me in so many ways even have taken the time out to PM on a few occasions. Your such a strong inspiration to me. No words can describe what I felt on hearing this news you have received! Keep fighting. Hope you get the care you deserve. Here for you anytime day or night. Huge hugs 🤗 ❤️ Anna
So sorry to hear this Julie. You are very brave to accept what cannot be changed but that's what we do isn't it. Well I'm coming up towards 2 years post-op. Waiting for surgery for 3 enormous hernias I've developed. I look 9 month pregnant! At my age that would be a miracle. Well it's been quite a strange couple of years. I'm on my own now which is sad but I am coping. As you know I'm just down the road from you at Gwystre. When this shielding is over, send a message and we could meet for coffee as I'm driving again now. I think of you a lot xxx
Hi Jules
I'm so sorry you are going through so much. You helped me when I first joined, I will be there for you too. Pm me anytime of day or night. I love Wales, we have friends in rhiwbina. You are in my thoughts and prayers. Thinking of you. Love and hugs Lynne xxxx 😘
I was delighted t see your name come up on here, we haven’t spoken for ages.
I am however, so sorry to hear the tribulations you’ve been through. You obviously never got to go back to qehb for another assessment. That’s all I was hoping for. How’s your partner doing??
Please be strong, and keep away from this bleedin virus!! It’s really good to hear from you again.
Hi Jules, nice to hear from you. I'm sorry you are going through this right now. I want you to know that you are not alone on this and I will be praying for you too. You are a brave lady and keep going. Don't go through this alone. You have so many friends on here, including me. So get in touch whenever you feel like. A load shared is a load halved. Stay well. Mxx
So glad you've been able to let us know how you are doing. I was thinking of you only a few days ago, as you and I were being put fwd for assessment at the same time. I remember there were issues at that time which required you to have further tests, so I'd been thinking about you and how you got on.
I'm so sorry to hear about your new challenges, and admire your strength and courage. You have had such a difficult time, it's really not fair that one person should have to deal with so much.
I hope you have plenty of support, and that the social services sort out a decent care package, so you are well looked after. Do remember we are here for you too.
Sending my continuing best wishes, a warm virtual hugs x x
Oh jules am so sorry to hear about not being able to have your transplant I myself have cirrhosis and I to had liver failure at 27 due to alcohol I am 8 years sober and now 41 my liver specialist called me a ticking time bomb as my liver can fail at anytime yet I feel well in myself I have a wonderful wife whose stuck with me through my dark times she deserves a medal as she never drinks and never has I sometimes worry about me and dying and leaving her and my daughter alone i never rarely speak about my condition because she gets upset I also have impaired kidneys and they failed a few times but I put on my brave face and I sit alone and cry most days but stay optimistic about the future I've got coming .I just wanted you to know that your n inspiration not only to me but to people who are feeling down and scared I've just read your post with tears in my eyes because of how brave you are and still positive on life ahead .just reading your post has given me a goal of not to give up and to stop worrying and to have your amazing outlook on life and enjoy the now and what will be will be and know matter how long we may have left in life I and we will fight it till the end x am sending you all my love and prayers PS let's keep fighting yours kindly
Hi Garry, what a lovely message, my update isn't great but liver failed in November and organ failure. A+E put a bed next to me for my partner as they were just waiting for my heart to stop. I got moved to a ward and was hanging on every day. In the September in corfu I broke my back in 4 places but managed with time to drive but not walk far. In November after begging each day I eventually had 8 litres of fluid drained from stomach and I survived. Apparently I wasnt eating enough protein so my liver was feeding from the leg muscles. Went back into hospital last month as my blood sats were very low due to a condition called atelectasis of the left lung and while I was in, I got out of bed the usual way, stood up, screamed and cried. Got put back to bed and pleaded to see on call orthopaedic on the same morning Saturday, so spent whole weekend sobbing. Saw one on Monday morning, had urgent MRI and I've properly snapped my back. Have back brace and travelled by ambulance to morriston hospital, Swansea to be told I need plates pins and a cage immediately but I would die on the table. Hes arranging painjections as local to me as possible. I was told I was a ticking time bomb 10 years ago but our difference is I'm end stage cirrhosis. I eat as much protein as I can and some carbs before bed and plenty of squash. Cant stand the smell of booze. I've not been on here for ages. I'm 50 by the way so hope I keep going as long as possible as I've defied all odds except my back
Bloody hell you have been delt a very shitty hand I feel so sorry for you I know of the pain your going through as i became disabled just over 9 years ago I'd not had a drink in over a week so I awarded myself with a drink I was living across from my now wife she lived in a flat and I also had my little flat anyhow I went over to see her and she knew I was drunk Within 0.1seconds 😂and said your not coming in drunk she was so angry that I'd had a drink she said come back tomorrow when your sober well it was a lovely sunny evening and something in my head said I know I'll go and see my good friend on my bike I eventually got there and I had another drink and the rest of what happened I was told by the hospital my friend said I was just looking into space and had a single tear come down my face and collapsed and turned blue I went into cardiac arrest my friend resuscitated me until the paramedics came and they kept me stable then on arrival in hospital I had a massive seizure and went into respiratory arrest I woke up 2 days later in icu and was told my kidneys have failed but it wasn't that I was worried about it was the fact I couldn't feel my legs then my kidneys had started working but my legs were still dead the reason I was so poorly was that I had sepsis because of abscess inside me had burst I was in hospital for 3 months and told I will never walk again because of severe nerve damage in my spine which caused paralysis and the pain is unbearable sometimes am on 440mg of morphine a day as well as my oramorth diazepam amitriptyline 600mg of pregabs but I couldn't imagine how much pain you must be in it must be unbearable x I'll tell you 1 thing by reading your story you are brave and 1 tuff cookie and your still inspiring people' I know before you say anything that's more than 1 thing but someone is definitely looking over you and you deserve some bloody luck I admire your bravery I really do I hope we can stay in touch and keep inspiring the people on here X ps my wife sends her love and prayers and says your so brave x chat soon jules keep up the good fight x💙💙🤍
I don’t know you personally but I do wish you well and hope you can get somewhat better soon. You are living a nightmare and this Forum is the only place you will receive the empathy and compassion you really need. We ask for too much when we ask for such support from GPs. They no longer are able to live up to the ‘ ‘old days’ when a GP would call on you at home. All professionals are now far too busy to meet those expectations or needs, on a regular basis. Their job description has changed from that of a friendly, kindly, caring advocate for helping you through all medical difficulties from birth to death, to a person who is office or home-based now due to COVID. Their paperwork (which should have reduced by now), is superseded by data transfer/ getting to grips with computer software systems, which hardly ever work effectively, and sharing their workload, amongst individuals with special qualifications in one particular area like physio, OT, Midwifery and so on. They too have to learn this week’s new tech wizardry, which is time consuming and disconnects them from patient care who they now regard as consumers. All of this is largely driven by money - have we got enough in the kitty for a new member of staff, will our salaries, for being ‘business managers’ be sufficient etc, etc. It seems (and I’m sure you will correct me if I am wrong), that ‘patients’ often come way down their list of priorities. Can indeed GP’s ever be what we would like them to be. It seems to me that their two roles (as business men or women) and (being kind and caring), are mutually exclusive. The more time you spend with patients, takes time away from other things. Wobetide you, as a patient, if you have a history of mental health problems as this costs them too much. Their value judgements and prejudices then go into overdrive. Believe me, I have been the recipient of a lot of this negative stuff. If this is too cynical for you, I am deeply sorry and you have suffered far too much to go into this now. You need a huge outpouring of love and compassion, as you have to struggle so hard with the negative decisions of medical staff. In vindication of them, May I add that NOT ALL medical personnel are stuck in this mindset. There are some wonderful doctors, nurses and some really hardworking and caring individuals. These people go beyond the mark for the sufferers of various illnesses and should be applauded.
My concern, however, is for the road we are going down for the future. It does not bode well. You and I may have a lot more ‘dollops of suffering’ before the current thinking takes all medics and people (they used to call patients) down this long and gloomy road. I do fear for my own posterity and future generations who will not have Forums like this, in which to participate. There will probably come a terrible time when nobody ‘gives a damn’ anymore.
Like you I have been the recipient also. You end up getting on with it, taking the meds, googling results but I've recently struck lucky with my new female GP. Before she came it was run by the owner and locums. He was blase about my diagnosis of atelectasis of left lung and no treatment even though my sats were too low at 80 82 max. My new GP arranged oxygen in 2 rooms and portable if I get taken out. I have a car but back fracture has stopped me driving for a while. I do enjoy talking NHS politics and red tape so keep in touch
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