Sorry in advance for the long post. I'm new to this forum
Hi all, I was 999'd on 9th of May last year with a suspected heart attack. Found to be Pancreatitis with severe necrosis. Spent a month in hospital and was recovering nicely until week 5 when started with nausea. Spent anther week in hospital went home for 12 days then back in again. Pain meds changed and increased and after yet another ct scan found to have a pseudo cyst,that's when I noticed my legs swelling. Spoke to nursing staff who just advised to carry on wearing compression stockings and moving around. Discharged home but my legs continued swelling and it became painful to move. That's when I started to become breathless. Called my GP out and SAT's were low so he wanted to admit me but I refused as I was sick of being in hospital. Had to go in 3 days later as they hit 82% and I was really struggling to breathe. That's when things became even more scary than in May. My lungs had filled almost to the top with fluid and an hour after visiting had finished my sats dropped again to the point I was admitted to ICU. When I finally came round they told me I had bi lateral PEs and it had been touch and go. They drained 8 litres of fluid from my abdomen over a couple of days and when I moved back onto a regular ward a week later had a stent fitted as pseudo cyst had grown to the size of a grapefruit. Was originally supposed to be 2 but 1 wouldn't stay in place. Finally discharged again after another month. Within days of being home I started to fill with fluid,lost my appetite and started with a high temp Admitted yet again this time with sepsis caused by the stent/cyst, abdomen drained again and a regime of high dose IV antibiotics. Yet another month in hospital during which time my Dad was admitted to the same hospital and sadly died. Had to fight to be discharged to go to his funeral and after 2 days started to fill with fluid yet again. 1 month later spent 10 days in hospital having abdomen drained yet again. At clinic appt in Dec my consultant brought in a liver specialist to see me who advised upping diuretics to 100mg Spironolactone and 80mg Frusimide, and to increase again if no change. He also organised a Fibroscan which has now given a result of 8 or 8.8 ? don't really understand. My specialist now wants me to have an ultrasound as he thinks it may be a false reading due to the ascites. Just wanted to know if anyone else had experienced this and also if it is normal to have extremely painful joints. I have massive muscle loss due to the amount of time spent in bed and have lost 41/2 stone. Sorry again for the long post.
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Dawn5590
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Welcome to the forum, we hope you find it a supportive place to visit.
It seems like you have been through a lot both emotionally and physically.
Hopefully your liver condition can be further clarified by your specialist after more tests.
With regards to your weight and muscle loss, it may be a good idea to discuss this with your GP.
You may also want to also consider asking your GP for a referral to a hospital registered dietician who can assess you, and offer specialist dietary advice.
If you'd like to talk, then The British Liver Trust helpline is open 10-3pm Monday to Friday on 0800 652 7330
Are the Duitetics working? My boyfriend was in a very similiar position and five months on he is beginning to rebuild muscle and is getting back to himself.
Hi Pauline, yes they have for my abdomen so have recently had my Spironolactone cut to 50mg daily but my Frusimide has been upped to 120mg daily as my legs are still swollen. If the swelling doesn't improve I have Carte blanche to up again by 1 tablet including the Spironolactone. Finally got the go ahead to return to work after 10 long months so hopefully muscle rebuilding will continue. Glad to hear your boyfriend is improving 😊
Have you been told high protein and low sodium? If so try working on the protein. If not ask if that should help. Also ask about magnesium. That seems to help with achey muscles and joints.
Hi Pauline, I try to eat a high protein, low fat& low sodium diet. Somedays I struggle to eat even small amounts but try to ensure I have milk at least. I take Creon enzymes with each meal and snack and follow the guidelines the hospital dietitian gave me. I do have cravings every so often for salty food and I admit I give itn to them. Will ask my GP about the magnesium on my next appointment. Thanks
Hi,
With regards to dietary advice, There are some special considerations that people with liver disease may need to make in their diet to stay nutritionally well and to help to manage their condition. Some of these are specific to certain liver diseases, others relate to how advanced the liver disease is.
It would be therefore be advisable to obtain specialist dietary advice from your liver specialist in the first instance.
in addition, If you have concerns about any prescribed medication or are considering using complementary or alternative remedies &/or therapies always discuss this with your doctor in the first instance.
Hi Rebecca, I take my Creon and follow my healthy eating for poor/small appetite booklet as advised by the hospital dietitian. I will definitely seek medical advice before taking any other meds/supplements. Thanks
The dietician pointed out that milk is a good source of protein.
My boyfriend was advised it should be high protein and low salt and the ascites and edema have cleared up although he does for instance eat smoked salmon which is high protein and high salt.
It is definitely worth asking a doctor if he thinks it could be a lack of protein which is causing the problem with fluid in your legs.
With the lack of appetite... which the ascites makes worse.. maybe it's worth considering protein shakes? I do feel for you as it's horrid to have to eat when you already feel sick.
Just read your post on cyst. My God you've been through the mill. sorry to hear about your dad. My cyst is suppose to be 2.5 cm that was found in April but only have appointment on 14th this month. Quite await.I totally relate to the stiffness and soar as I lost over two stone not eating from ascities from cirrhosis. Every day is a challenge in walking right. To think a simple thing like kneeling is out of the question I would be in agony. Due to mussel and what ever else I lossed while not eating..
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