Admitted with massive bleed.

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Hello I'm looking for some straight talking individuals who can help me to understand what is happening with my mum, thanks.

My mum was admitted 6 days ago with black stools and throwing up dark brown substance.  Once on the ward they arranged an endoscopy and whilst doing this they glued the stomach and injected the veins that were bleeding (varices).

Then they did a CT scan and told us she has a fatty liver with scar tissue, Cirrhosis which is probably due to alcohol.

Mum was 60 a few days ago and already has COPD and had a heart attack in her 40's.

Today whilst I was visiting the nurses did her observations and I was totally shocked to see her BP at 61/26.  She did have fresh blood from bowel yesterday but they weren't overly concerned.

I know that the beta blockers were given to reduce the blood pressure to prevent further varices bleeds but I wasn't really expecting such a drastic drop.  Her usual body is 125/80.

I had asked the dr yesterday had she been graded and was told it was unclear due to bleed and that once she's seen in clinic in a few weeks they may be able to give more information.

So my question is am I being paranoid or is this end stage Cirrhosis as I'm not seeing much about people having the severe varices bleeds other than those that are very advanced in disease.

thank you in advance I lost my dad to esophegus cancer 10 years ago aged 51 so tend to be one of those people that needs to hear everything as it is.

 

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  • Posted

    Also about to start iron infusions and mentioned there were a few things in bloods they weren't happy with today Phosphate and she thinks glycerine?  She wasn't sure though also said she needs to start laxatives and I have been thinking she had the start of dimencia.

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    • Posted

      The laxatives are not like normal ones, they are osmotic. They stop gut flora and drawa water and most importantly, the ammonia from the system. The ammonia doesn't get removed by the weakened liver, so probably the lactulose they give her will perform this action. Ammonia build up will cause hepatic encephalopathy (confusion).

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  • Posted

    "straight talking individuals"

    I can do that and I have been in hospital previously, for nearly two months for ALD cirrhosis, so I'm reasonably well qulified from a personale experience point of view.

    The medical term for this type of black stools is melena, it is caused by the stomach ingesting blood from an internal bleed. I don't believed they glued the stomach, I think what they would have done is banding on the oesophageal varices once they detected the bleeding from the gastroscopy. This is caused by portal hypertension in the liver. This would have been done to stop the bleeding.

    She will definitely have alcoholic cirrhosis is she has varices. Ask them if she is Child-Pugh class A, B or C. BP at 61/26, this is called hypotension and wit varices is very serious and I (from my knowledge) would have been very upset and annoyed with the nurse if this had been my relation. I had varices and when I was in hospital, they used to do obs (observations) every 4 hours and I mean every 4 fours, I used to get woken up at 2:00am in the morning to have my BP taken. The reason for this is, varices can be deadly and the only two ways to know if there is internal bleeding going on, is either you're throwing up blood, or your BP drops very low and it is being ingested in the stomach.

    As for end stage, it is difficult to tell. Three years ago, I was admitted to hospital, with potential liver failure and a brain haemorrhage. I had varices (no bleeds), jaundice (a lovely shade of yellow) and an ascites drain of 10 litres. I am Child-Pugh A.

    So, three years later, I had one of my regular meetings with my gastro and he said, your liver might last you for the rest of your life (51) or you may need a transplant, we just don't know. But I am still here and if you saw me, I look the picture of health.

    Aologies for mistypes and spelling mistakes.

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    • Posted

      Thanks for the reply yeah I think everything you've written is what I have picked up just can't pin them down to how serious it is if that makes sense

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    • Posted

      I bought my patient records some time after I left hospital. I lot of what I know, was from reading them, not from what I was told whilst in hospital. And latterly doing research on what the records said.

      I would go in (assuming you're NOK) and say give me a Child-Pugh classification and score. Your best estimate and prognosis, I have a right to know. If you get nowhere, put a complaint in through PALS, just search Google 'hospital name PALS'.

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    • Posted

      Right, they should have done an abdominal ultrasound (exactly the same thing they do with pregnant women) and this can clearly see all the internal organs. Because when you suffer from ALD, it isn't just the liver that gets a kicking. Ask them if they have done one, if not, why not, if so, can you have the results explained to you.

      If they try and bluff it and say, not much we could see from it, then ask to see the radiologists report. The radiologist is a doctor not just a machine operator and they do it day in day out, so they are quite expert in extracting information from them. These people (consultants) are evasive and you need to keep pushing.

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    • Posted

      Thought I'd give you an update.

      a week after returning home my mum was admitted with sepsis it turned out to be ecoli in her blood that wasn't found in the urine or bowel which apparently isn't how this usually appears.  It has taken 3 weeks to get the infection under control and has only just come out of hospital again.

      They have written the discharge report as;

      main diagnosis

      1) inefective exacerbation of COPD

      2) E Coli bacteraemia - ? Obtained after recent OGD and injection of glue

      Other diagnosis

      IHD (MI 2009)

      Moderate COPD

      Oesophegeal and gastric varices

      Hyperchloesterolaemia

      swine flu

      asthma

      ultrasound abdo: Mildly hyperechoic liver in keeping with fatty liver. Splenomegaly 

      CT Thorax/abdo/Pelvis: There are background changes in keeping with centrilobular emphysema. Inflammatory changes are still present at the right lung base which could be infective in origin.  Within the abdomen, the appearance of the liver remain unchanged and would be compatible with Cirrhosis.

      few other bits and pieces on the discharge but these seem to be more the liver related one.

      so now I am even more confused.  I have been reading and it seems once a bleed happens it's quite high recurrence figures.  I'm also confused s to how is it decided if the liver is decompensated or compensated?

      i have been doing bits of searching but obviously it was seeing she could pull through this latest ordeal whic to be honest there has been a few days that it didnt look likely.

      Thanks for reading 

       

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    • Posted

      Okay, some of these things are secondary, i.e., one you get one problem, the other problem is usually caused by the first problem.

      COPD is a lund disease/problem, probably because she was a smoker and you are probably awate of what it is. The E Coli bacteraemia seems to be something that she picked up from hospital from the OGD glue.

      IHD is ischaemic heart disease, build of of plaque, Google for full details. Varices, I'll come back to. Hypercholesterolaemia is heridatary raised cholesterol, probably the cause of the IHD.

      Swime flu? I think somebody is having a laugh. Asthma, they labelled me with this one. I know what it is like because I had it when I was about 10 and had a Ventolin inhaler. But certainly don't have it now. They seem to label anyone with a shortness of breath as asthmatic, when the two are completely different.

      Splenomegaly, enlargement of the spleen, too many causes to be able to narrow it down, but as mentioned previously, alcohol affects most of the internal organs. Centrilobular emphysema, again lungs aren't my speciality, but it seems to go hand in hand with smoking.

      Cirrhosis - decom -comp - Okay the difference is, a compensated liver is one that is damaged by cirrhosis but there is enough working liver left to function and carry on doing what the liver is meant to do. Decompensated is that it is too damaged to support its normal function. One obvious thing that comes to mind, is the removal of ammonia fron the system, otherwise it rises to the brain and cause hepatic encephalopathy (confusion), the liver can no longer do this, so the patient takes lactulose to artificially remove it from the system.

      Also the varices, which are quite serious, can lead to internal bleeding. There are only two ways to detect bleeding, you start coughing up blood or your blood pressure drops dramatically. The use to take my BP every four hours when I was in hospital, I can tell you, being woken at at 2:00am every night, is not funny. They have used the OGD glue method on her, in this link you can see about varices and a tiny bit about the glue method.

      https://patient.info/doctor/oesophageal-varices

      She should be put on carvedilol to help with this. She probably has peripheral oedema (swelling of the feet & ankles) and a diuretic such as spironalactone would be give.

      In summary, she has three problems, cirrhosis/varices from alcohol, COPD/lung problems from smoking and IHD (which manifests itself as angina or similar) because of hereditary high cholestorol.

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    • Posted

      Yes she's on carvedilol, she's also taking senna tablets and dioctyl sodium.  Do you think that means it's decompensated?

      ive said since Christmas I thought she had dementia setting in she isn't really bad just says odd things sometimes.

      yes mum smoked and has had the copd for a few years she hasn't smoked for over 10 years and had a heart attack in 2009 hence the IHD

      she said she can taste the same taste when she was being sick with the coffee stained sick when the varices bled which worries me too.

      thank you for the help I'm so glad there is somebody who I can talk to as it's very hard to talk with anyone else.

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    • Posted

      Make sure she takes the carvedilol for the varices, as it is a special beta blocker that helps to stop the portal hypertension, that is the cause of the varices.

      I'm not sure why she is taking senna tablets and dioctyl sodium, they are two types of laxatives, but standard ones and you are not meant to be on the latter for long.

      Without seeing all her records and scans/tests it is difficult to say whether she is comp/decomp, certainly borderline. If she is decomp, she should certainly be taking lactulose, which is an osmotic laxative.

      'In liver disease lactulose works by reducing the absorption of ammonia from the gut. The liver normally breaks down ammonia, but in liver disease such as cirrhosis the blood may bypass the liver, allowing this poisonous substance to pass to the brain.'

      She should be taking this if she is confused, also thiamine tablets 100mg a day, I have these prescribed to me, along with many other medications such as carvedilol. Does she have a build up of fluid around the ankles/feet?

      The COPD and the IHC, you seem to understand and as I said, that side of things is not my speciality.

      Coffee stained sick, is actually blood, stale blood, that turns brown. From the NHS website:

      'Vomiting blood (haematemesis) could be a sign of a serious problem.

      You should go to your GP surgery or nearest accident and emergency (A&E) department.

      The amount and colour of blood can vary. For example:

      you may have vomited large amounts of bright red blood

      there may be streaks of blood in your vomit, mixed up with food

      there may be what look like coffee grounds in your vomit, which means the blood has been in your stomach for a few hours'

      That means that if she is currently having coffee stained sick, the varices are bleeding and that needs to be checked out.

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    • Posted

      She has a repeat endoscopy on the 15/05 which was booked after the bleed to check things and we were told that when she has her first appointment in the liver specialist clinic they will go into things further.

      she did have quite a lot of water on ankles, legs whilst in hospital but that seems much better now.

      My mums just called to say the gp wants her to take her BP each day and will see her next Thursday as they need to monitor it.

      shes had no sickness since the bleed in march so I'm hoping she's imagining the taste.

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    • Posted

      The endoscopy will check the varices and have a general look. An ultrasound tells them the state of the liver, along with specific blood tests and this would tell them if she was comp/decomp.

      Write all of your questions down that you want to ask at the liver clinic, as you will be out of your comfort zone, a little uncomposed and will forget most of what you wanted to ask, until you are in the car park, going home.

      The BP check will be for the varices. There are two ways to check if they are bleeding, one the patient is coughing up blood, so it is self evident. The other is a big drop in BP, means the blood is leaking into the stomach. As I think I said, in hospital they used to take mine every four hours, including 2:00am.

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  • Posted

    Hi Emma

    Let me first of all say how sorry to hear of your mums illness it's a horrible disease.

    I have cirrhosis and I am awaiting the final decision on if they will give me a transplant but it has been a very long time waiting to get to this stage. I will tell you what I have had done and what's happened since it may help with getting more direct answers. Upto now over 18 months I've had 6 gastroscopy procedures for varices and have had problem ones banded when needed these are little elastic bands that fall off when they heal,I have never had them injected maybe different hospitals do different procedures but worth asking. I'm sorry to say but her BP is dangerously low and that needs addressing without delay, if they aren't overly worried about this they should be,and you have a right too know why this isn't being dealt with as a matter of urgency.they took me off betta blockers I was on as I have ischemia and angina and gave me bisopralol. My BP is still a little low at 99/76 but is managed as they know slightly lower BP lessens the varisces problem. They have also taken me off asprin as that's another thing to increase the chance of bleeds but in doing that they said it was a decision made about which was the more important issue to focus on the end stage cirrhosis or the heart problem.the fresh blood is not as bad as dark/black blood or dark /black stools as dark means blood is old and shows there may have been longer internal bleeding that has been apparent before, she also needs to have medication to make sure she has her bowels open about 3/4 times a day, I'm am on lactulose 30mg 3 times a day but I've got to take more if I don't have as many bowel movements as they say. The also insist on me having approximately 5000 calories a day which has to be subsidised for me with compact fortisip 6 per day as my appetite isn't great at all so I find it hard to get the amount of calories I need as well as me being on insulin for diabetes as well, although you say her cirrhosis is alcohol enduced mine has alcohol as a cause but they never listened to the fact of my mum having liver failure as well and she didn't drink, it is only in the last month with assessments for transplant having been done at the UK liver transplant hospital that they now say its more likely to be non-alcoholic fatty liver disease.

    Finally for now may I say my advice to you would be to request a one to one meeting with your mums consultant and write all your questions down with your mums facts and also what nurses have said and present them to the consultant verbally and ask for specific answers,as long as your mum is happy to let them discuss her illness with you then request an urgent meeting it is your right.

    Please feel free to contact me any time and when I'm not at appointments myself I will be happy to try and help if I can.

    Good luck Emma don't let them fob you off

    Helen x

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