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.