Hi everyone hope you all as well as can be, went for my six monthly ultrasound on liver yesterday and that was my result fluid around liver and pelvic area was given advice on sodium fluid intake and give spriolactone think I've spelt it wrong heptologist wants to see me in 3 months to see if everything OK on water pills, I have had extremely low blood count 7.1 gp was supposed to send me or get in touch with my hemothogist to arrange blood transfusion, as she has said if it drops that low again it has to be done, even though extremely weak can hardly walk 10 steps without stopping as breathing so bad he still haven't sent me, I'm going to try and get to her sectreary myself, my heptologist said a good option is iron injections, my iron keeps going up and down, when down I can't go out alone as inclined to pass out or that's the feeling I get, dizziness and weakness, sorry for going on, one more thing now this is really annoying me, my husband died 2 and a half years ago so live on my own, don't feel sorry for myself, but my daughters who are 44 and 40 hardly come near me, I tell them what's going on medically as I am told it, then they don't come near me for ages, untill this iron level is sorted out I really do need help getting to doctors appointments shopping etc, if I ask over phone they just go silent it makes me feel as though I'm asking to much for a lift, costs me lots of money in cabs which I can't afford, after all that worried about fluid around liver and pelvis any advice as couldn't really ask dr as could barely speak due to breathlessness. Annette !!!
Fluid around liver and pelvic area - British Liver Trust
I got trips to and from the hospital arranged by the NHS and for free. You should check you're not entitled to this. Sounds like you should be.
Hello Angse. There are a few people who are meant to be there for you - and they need a bit of a 'talking to' People do not know what you are going though - and do not seem to be giving you the TLC you need and deserve. It is especially hard at this time of the year, and being a widow makes it especially hard as I know from experience. You do really need this blood transfusion, it is especially hard for you when there is no one there to fight your corner for you. I am thinking of you - Good Luck x
Thanks games maker they seem not to understand I really don't know, I know I was a very strong person physically and emotionally until I got this disease 2 and half years ago, I still force myself to do things, but feel so unwell now a lot of it neglect by gps but it seems I'm fighting a hard fight alone, still we have to get on or go under which I'm not prepared to do. Annette
As Rodeo says there are often volunteer drivers available for trips to hospital and/or GP. Ask your GP practice if they run such a scheme and ask your hospital the same question. The Red Cross also run volunteer schemes, see if they run one in your area. The Red Cross also run schemes where volunteers will visit you in your home for company and support, as they are a charity its probably free.
I guess we parents assume that as we cared for our children when they were young that in turn they will care for us when we get older or sick. Unfortunately it doesn't follow! I look after the elderly in their homes and many of them have sons and daughters who rarely if ever visit or do anything for their parents. Either they have busy lives and families of their own who demand their time and attention, or they are not of the 'caring' personality that comes more easily to others.
I know its daunting but have you thought of moving into sheltered accommodation or similar where you would have company close to hand and perhaps a warden at the end of a call button? Some 'active retired' places have a social space such as a lounge or cafe where people can meet up.
Awww that must be awful angst. ..maybe your kids just feel helpless ..sometimes people pull away when they feel they can't really make a difference ... but at least they could try and support you..but Bolly is right even family get caught up in their own life and can be selfish..do you not have a friend that could maybe support you!
Talk to your GP they might be able to get you some support and at least tell them how much you are struggling to cope right now!
I'm so sorry Angst it must be awful to feel so ill and needing to rely on people's help, even if you didn't need practical help- which you do obviously you need emotional help from somewhere! You are going through a lot whilst still getting used to being widowed, I wish we could do something to help you, at least we send our love from a distance. Have they said why your Hb is so low, do you have a bleed? Hope you get something sorted it's so frustrating when your GP is clueless as that's your first point of contact!!
Hi dooley1 they are saying to do with bloods because of cirrohiis, no evidence of bleeding at present, will have to have the dreaded endoscopy to see if bleeding inside, after Xmas will be transfused so should feel better after that, its the fluid buildup that worry's me, feel so out of control will do all I can do to stop it getting worse, all advice I get here helps me greatly so thank you hope you are well. Annette
So sorry to hear all of this. You are not alone as far as your family are concerned. Myself and a lot of my friends are in the same boat. Familys are just not what they used to be. Mine shunned me in this way every time I told them the latest issue on my husband (not their father) got no help whatsoever.
Learnt to accept it now ,otherwise it eats away at you. You were probably like myself and many others, did the best you could for them and then get hurt like this. Try not to dwell on it, you are not alone here it isnt you it is current attitudes.
Please ask CAB for help in steering you in the right direction for help getting to appointments.
Hi ya- I've been on Spironolactone since March for fluid collecting around my heart & lungs, a condition which made for some gaspy breathing. The medication has done wonders although at times I still have to use my inhalor.
Spironolactone, to the best of my knowledge was originally developed for teenage acne!! Two fold plus there- alleviates fluid & my skin looks great lol.
I'm Stage 4 cirrhosis w/MELD currently at 12...
Hi angse, I feel awful for you reading your post. I am 44, so the same age as one of your daughters, I couldn't image leaving my mum to suffer like you are. I wonder if you could write to them, telling them how you feel. Often, if we are upset about something, conversation s don't go well as you can easily go off topic or end up arguing and then not getting things out. Only you know what your family situation is, so obviously I can't recommend what to write, but I think telling them how isolated you feel, how difficult it is. If you have always been very strong and independent they might not realise how difficult you situation has become. I know it might be hard to admit that, but it might make them see things are different now, and you need support.
Also, like another post mentioned, I would be concerned your iron is so low. Do you have any evidence of bleed, tar like stools etc. If you do have injection s the district nurse should come to your house, I don't think you should be expected to rush here and there with an HB so low. In fact I'm surprised they didn't give you an infusion straight away. You'll feel so much better after having it. I would be tempted to go via a and e and they would definately give you bloods if you went with shortness of breath and feeling awful.
Finally, it sounds like you now have ascites, I hope the medication and sodium restrictions will improve it and keep on top of it. Having read other peoples comments, it seems some have good results managing it and others don't. I'll keep my fingers crossed for you.
I really hope things improve for you, and wish you all the best. I would love to offer my help, but I'm sure we don't live close by. I'm in Somerset??
Take care, and keep on using this site for at least some online support!!
Thanks very much wass 71' for your reply and advice, I think for the moment we have resumed problem and are coming to terms with how we all feel, as for the acites I am shocked shouldn't be but I am it really scares me, so I will have to sort that out, I'm not going through life being scared, I thank you once again. Annette
I really feel for you I was my mum's carer and loved every minute of it just wish she was here today. It's hard when your own family dont show you more support, my mums sister shunned my mum not even going to her funeral, which really upset me there was no falling out on my mum's part, she just had a uncaring sister, but I soon told her what I thought of her but it fell on deaf ears no conciense at all. But stay strong you have a good bunch here who will be hear for you. Take care xx