I have cirrhosis from Nash. Was in hospital twice recently with severe pneumonia and treated for sepsis as well. Whilst there I started bleeding badly through mouth. Blood loss continued for one and a half hours. Took photo of sick bowl with lots of blood in it plus another bowl of bloody tissues. I wanted the Dr to see it as this has been going on since Oct 2017 and the docs usually ignore it. He looked at the ‘evidence’ and said nothing. Later that day one of his juniors told me they can only treat the problem I came in with ie respiratory!!!!! They said I must see my GP. Discharge letter noted ‘some bleeding’. As I have “Multi-morbidities” - like most of you, and GPS only deal with one problem at a time, I knew this was a nonstarter. I have not been to GP since 16th Jan when I came out of hospital. There is seemingly no Clinician who deals with multi-morbidity in the UK. The Gastro man I see for the Liver won’t give me information like blood results etc. I am on my own with all this. My family and friends tell me to leave my health research alone as I am becoming obsessed so I cannot talk to any of them. When really poorly in hospital, my sister very unkindly told me (adding expletives) to not go into rehab after hospital but get home and look after my husband. The hospital wanted this for me as I was exhausted from trying to look after him. I went home, back to more stress, more pain, more helping my husband, and more helping other people despite all this stuff going on for me and cannot talk to anyone !!!!!
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Splodge60
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Have you had a recent endoscopy Splodge? That's ridiculous that they never investigated that whilst you were in hospital. Does your gastro man know about the bleeding? I would be tempted to alert him to this and get your next appointment brought forward. Sorry to hear about your current situation at home and lack of support.
I’m having a Bronchoscopy next week on my lungs, as I have problems there too. Waiting to hear from Liver man as GP has written to him. Blood tests reveal low Vit D and red blood cells low.
Hope your low red cells can be sorted, that could make you feel a bit better.
The shortage of vit D is a fairly common thing in winter through the lack of sunlight on our skin, also when we are not well and spend a lot of time indoors we can suffer from a shortage of it.
Are you able to have a vitamin D supplement?
I am prescibed Calceos twice a day which is calcium + Vit D and I eat oily fish at least 3 times a week as not only is it good for you it's also high in vitamin D.
Vitamin D is something that I never thought to take through all the years that I was ill up to transplant, the days when most of the sunshine I saw was through the window.
I just wanted to let you know that it is 18 months since my last Endoscopy. I’m still bleeding only more so now, with several clots coming out plus red ‘stringy’ stuff as well. It is not painful in itself but it saddens me that this is still happening. I think I’ve mentioned on here several times that my Liver Consultant is very unhelpful. A Haematologist did lots of unusual blood tests and I get the results of those on 11th August. I’m not even having usual LFTs and usual blood tests before I see the Liver man (also in August). The only test he is doing this time is is US of Abdomen. I’ve never had an MRI of abdomen. He won’t give me test results and tells me not to worry. Then I hear (from the Palliative Team) that they had a meeting about me, and concluded I only have months to live. I saw this on Patient Access where it was recorded on 8th June. I saw it on 9th July. When I spoke to my Palliative contact, she asked me NOT to contact my GP, she would do it. Next thing I know, the Surgery took that post off my record. Fortunately I photographed it before then. What is going on? Why are they being like this with me? Also, when I applied for my usual medication on Patient Access, there were red signs all over my record To REFUSE my request. So once again I rang the surgery to ask(whoever deals with medication) why this was so, she got very angry with me and said that it was approved and was at the chemist. I politely repeated my request what was the reason for refusing, she kept repeating, over and over again that it was not like that and it was at the chemist. My husband heard this (as I was on speakerphone) and could not believe what he was hearing. Again, I ask, why am I being treated in this manner? I have complained about them, yes, but I’ve never been rude or horrible to them as they have been with me. My Health Unlocked account is full of similar stories, most of which I cannot remember now, as my memory is now very poor. I am so exhausted by my illnesses, as well as all this negative stuff coming from the medics generally. I had a major panic attack this week, where my bpm went up to 209. That’s never happened before. There is no point telling the doctors as they will just put it down to Anxiety, which it is, even though I’m at high risk (on many variables) from heart problems. A year ago I was diagnosed with Ventricular Tachycardia but there is just no point discussing any of this with any of them. Sorry to go on and on to you personally. I always get the feeling that your knowledge of all things liver related, is very good.
That all seems really shocking Splodge, it's not something i've come across but no way should you be palliative care only without it being discussed with you.
It seems you've no firm diagnosis and not the best of relationships with your GP practice and that's awful.
Have you been in touch with your GP practice manager to discuss your concerns? Have you got a full copy of your GP notes - you are allowed access to/copies of these though some practices charge for copies (I know mine did when I needed access for an insurance claim following an car crash when I needed proof that my injuries were recorded as resulting from the crash).
As for the bleeding, have you not reattended at A&E and had that checked out?
You seem to have a lot of stuff going on but I am no expert at the workings of different GP surgeries etc. Are the palliative care team able to tell you what they've been told?
I wouldn't be just letting it lie that for sure.
Best wishes, Katie
Hi
This must be so hard for you. Could you take anyone to your next appointment so that they can see what you have to go through. Also, show themm this forum, you might get some help from them at last. Love and hugs Lynne xxxx
I can’t take my husband as he doesn’t support me. I took a nurse friend with me last time. She thought the Consultant was wonderful. End of that conversation!!!!!
I'm sorry your husband doesn't support you. That's a shame your friend was like that especially being a nurse. Have you got anyone else who could go with you? Where do you live, if you don't mind me asking? Love and hugs Lynne xxxx
I didn’t mean to give you wrong impression of my husband. He really loves me but when he goes with me but just makes jokes and says nothing constructive. I live in CHORLEY in Lancs
It’s the middle of the night again and was wondering how are you today? Are you able to get outside of the house at all. Panic not.....battery is giving up. Talk later !!!!!
I am very sorry to hear about all your problems. My opinion is to go to rehab and find someone to take care of your husband or get some hours help for him.
Maybe you have a church- or neigbourhood- help?
Hey to take good care of yourself, and have also an endoscopy urgent to find out about the bleeding. This is number one now for you!!!
Chance of going to rehab is now gone. My husband does not think either of us need rehab. We do have church friends whom we pay to help with ironing and 2 hours a week cleaning the house. I think that is fair. However, my needs are in relation to understanding and getting to the bottom of my health issues. No-one can really help in that respect except the medics and they are just not helpful. Sometimes. All I feel I want is someone just to sit down and ‘listen’ to my story. I don’t want judging and I don’t find it helpful when friends and family ‘tell’ me what to do with my life not knowing the full story. Perhaps I am asking too much. But yet, I also choose now not to talk to anyone about my stuff for fear of the above. I keep it all inside till finally I burst and then I get more of the negative stuff. Just writing this brings tears to my eyes. I’m not mean or selfish. Even when I feel at my worst I’m on the phone helping other people or listening to their problems. It just isn’t reciprocated and that hurts sometimes. Sorry for being negative. It’s a bad day today xx
First thing for you is to have your endoscopy. Show them the photo you took from the blood and ask for a urgent endoscopy, maybe you need banding of varices.
For your soul feeling better, maybe you could write down what you want to tell your sister and your husband and give them this as a letter.
Could you travel alone somewhere for a weekend or go do some interesting things only for you?
Tell everybody clearly that you are in a bad healthcondition and need support, also for peace of mind.
I don’t see the Consultant till 2nd April. Yes my consultant does know the history of the bleeding but not this last serious episode. He has arranged endoscopy in the past but it never reveals anything. To be honest I think my husband has been complaining to my sister about me. I’ll never get to the bottom of that. There is no other reason she should ‘attack’ me and I know they were on the phone whist I was in hospital. It just exacerbated my feeling of isolation.
Good morning Splodge60,
I am sorry to hear you are having such a difficult time.
I think as a matter of priority you need to seek medical help to discuss your bleeding.
You can also call our nurse led helpline on 0800 652 7330 Mon-Fri 10 am -3pm if you would like to talk with someone.
I'm so so sorry you are having a rough time just now.
With your medical record, and test results, you have a right to see them. You should sign up to the "Patient Access" service, and say you want all medical history and test results included. You should definitely call your hepatologists secretary ASAP to discuss your bleeds.... you need another endoscopy now to check if there are any ripe varices that could bleed.
It's very sad that your family aren't supporting you, so you have to be strong and look after yourself, and of course, you also have us here to help you as much as we can.
I have access to my GP records but hospitals won’t share anything, by my experience. I am thinking about trying to ring the liver man’s Secretary about the Endoscopy. It is 8 months since my last one xx
Hiya Splodge, So what however long it's been, you were bleeding!! I can hardly believe a hospital would discharge a patient without dealing with all of their co-morbidities. I just have never heard of anything like that, that is shocking! Here in the States that would not be acceptable. I have a feeling it would not be tolerated there in the UK either if you made the right people aware of it.
I hope you are doing okay at the moment, and get this sorted out soon. My husband is the same way, he cares, but can only make small talk and asks no questions about anything important. He has very blue eyes and a charming manner, and I am actually very glad to go without him when I can, my female doctor pays more attention to me when I go alone. 😳
For whatever reason, it sounds as though your family has decided that they are in charge of your health, and you should just get on with it. Stand up for yourself my friend, calmly reassure them that you will take care of them, but must take care of yourself first before you can do that. You can always count on the forum for support. Resolve now to take care of your needs, you are deserving and can do this!
May l ask what the rehab is for, alcohol abstinence or physical therapy? l am sorry if you told me before, l have lost my mind.
Thank you. I’ve had 2 episodes of pneumonia (one in Dec 3 days and sent home with 3 days of Clarythromycin). Not recovering I went back to GP who sent me to hospital again. I stayed there on IVs for 2 weeks, being treated for severe pneumonia and sepsis. I was very ill and went unconscious one morning apparently. After 2-3 years of constant hell, I asked the doc if I could have respite care for a short while. He agreed and it was being organised but my husband related this to my sister. She rang me up, very angry, and said, and I quote - “stop feeling sorry for yourself, get yourself off your b...........a.......... go home and look after your husband.”!!!!!
I thus did not go into respite, I went home!
I do not drink alcohol or smoke, my weakness is sweet things. With diabetes, I know how bad this is. Now I have no desire to eat anything at all.
Oh, so respite care is an intermediate facility between hospital and home?!
I am so sorry for you that you could not recover fully there, but maybe with sepsis and all the other dangers of institutionalized medicine, you are better off at home after all. Sorry for the misunderstanding, here in US rehab means drying out, or physical therapy for something like a broken hip.
But why does your sister have any say?
Nothing like a sister like yours (I have five sisters) to make you want to pull up the covers and hide. If there is a next time, tell her to buzz off!
One thing that really got under my skin is when my husband and doctor seemed to be having a good laugh at my expense, and I finally said I was fed up( to him) as we left the office. She felt so bad, she called me at home, which did help. I don't think she was aware how it seemed to me, but I haven't been bringing him back with me, and she is much more forthright about things. Maybe he reminded her of her grand dad, l don't know. But I am like you, l have questions and lots of other things going on, and no need to chit chat lol or guess at anything.
I have a horrible sweet tooth too, and metabolic syndrome, and supposed to lose 100 pounds. May l ask how you managed to lose your appetite? If you are keeping a good diet, not starving, that may be a good thing for you. l have heard of the sweet cravings lessening, supposedly you can wean off sweets, but l haven't had any luck yet.
I do appreciate your comments. Thank you. I’ve no idea why my appetite has flown the nest. The only thing that keeps me eating at all is the diabetes. I had a hypo yesterday because I didn’t want to eat any food. Nausea is another problem added to the mix. Just out of curiosity, how are your medical needs (re metabolic syndrome), being met in the US? They seem indifferent here?
Well, they keep harping on me to lose weight, as if that were some magical cure. And l would do it too, except l have zero willpower and concentration, yet "hope springs eternal" and l keep at it!
Meetings with the dietician, and physical therapist, to help me move correctly through exercises just for my individual problems (hips, knees, one arm since I fell) and dietary needs.
I was even referred to have weight loss surgery before I knew l had cirrhosis, and if I had gone through with the surgery, l might not be here to tell about it. I don't know if it is safe to try the balloon in the stomach, placed by endoscopy, but that is the least invasive option. Probably not something to try with mild varices, but I intend to ask at this month's appointment. It is supposed to make one feel fuller faster, so they eat less.
I might mention here and now, changes in appetite are not always a good thing. Have you still got your sense of smell? That may be a side effect of the powerful drugs you've been on for the pneumonia, a dulled sense of smell.
Whatever, l know nothing. I just hope you are doing okay, living your best life!! 😘
What is your BMI? Mine varies around 28 which is overweight but not obese (where I was in the past). The only thing keeping my weight around that level I think is as cites - not confirmed. Had full blood screening this week. 10 blood markers were abnormal. GP has put me on Vit D3 and folic acid. I have to have repeat bloods done in 2 weeks but you never get told why. It’s just a guessing game.
I feel the need to say how grateful I am to you all on this forum. You are all trying to cope so well and I admire you. xxxxx
Hey I just saw your post, how have you been? I hope you are coping. Like many, I'm in a bit of a holding pattern. I suspect the blood work was to see if your markers had changed at all. I take Vit. D3 as well, not as much now as before. I will have to ask my liver doc about folic acid, I had low blood oxygen level last time l went in person to my gp (in March).
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gastroscopy - risk of bleeding?
Internal bleeding & high potassium?
300 lft?
Couple of questions cirrhosis staging and a driving question 
Sorry all, this is a long post by way of introduction and first diagnosis
