I dont know where to start…My Nan, who has suffered with CKD for sometime has been in hospital now for 11 weeks. Well over a year ago she had a fistula fitted in her arm and it didn’t sit right? (forgive me as my knowledge on this subject is not great). My Nan kept going for checks at the renal clinic however a few months back they said she wasn’t a suitable candidate for dialysis and that her only other option was palliative care. To explain a little about my Nan, she is 85 with a long history of chronic heart failure, a heart murmur, chronic kidney disease and diabetes - all of these combined with her current hospital admission have also left her completely immobile. 11 weeks ago my Nanna collapsed during the night and was rushed to hospital where nobody really seemed to know what was going on with her until one particular day almost 4 weeks later we got a call to say she was being urgently transferred to a different hospital for dialysis? Her creatinine was 538 (I dont understand what that means??) and there was something wrong with her potassium/calcium/urea levels? She was immediately started on what they said was a 2 week dialysis trial - haemodialysis - following this they would review everything. I’m not sure how this came about when they had said a few months back that she wasn’t suitable for dialysis. Initially my Nan was really poorly on the dialysis and then a couple of weeks into the treatment she seemed to perk up a bit however - (BIG) however - the last 2-3 weeks we have seen a dramatic change in her - she is in permanent pain, she is breathless, she sleeps lots, she barely eats and what is perhaps the most distressing symptom is that she appears to have completely lost her marbles. She has always been fully compus mentus and now, practically overnight, she doesn’t always know who we are, she hallucinates and she just seems to have totally lost her marbles - she sees people who arent there - she talks to people who aren’t there, she says the most bizarre things all the time (she asks me what I’m doing on the ceiling etc etc) - she was very distressed yesterday as she was convinced my Mum had been admitted to hospital with severe flu and that my Mum had been dragged away by Dr’s screaming. My Mum had only left my Nan from visiting about an hour earlier - I’m just giving you a brief description but I could tell you stories all day about what she has been saying and doing. The reason for my post is just that none of us understand what is happening at all - we’ve had a meeting with my Nan’s consultant on Thursday who said that she wont get better, the dialysis is not working as expected, although it is maintaining her existence, they will continue with dialysis (which really distresses me knowing how much my Nan hates it and knowing what it is doing to her), her quality of life will not improve any and her symptoms on the whole wont improve any. This is devastating. It breaks my heart to see my Nan the way that she is and it seems she can not now expect any better from her life - its as though she is here with us - but she isnt here with us - if that makes sense? The nan we knew several weeks ago has just disappeared. The consultant didnt give any indication of how long this will continue and we spend our lives on pins - waiting, wondering - could this awful existence my Nan now has (she is so unhappy/depressed/unwell) continue for years due to the dialysis maintenance? Is there anything we can do for her that would help improve her symptoms? Her doctor also said that she has signs of infection in the lower lobe of her lungs which potentially could have devastating consequences - what on earth does this mean? I’m sorry to go on and on and on, and I know you dont have my Nan’s full case history but any advice you could give to put us in a clearer picture would be gratefully received. I never know from one day to the next whether I can expect to see her alive again, I’m a bag of nerves who cant concentrate through the day and who sleeps with the phone next to my head in case the hospital call during the night.
Oh…I forgot to mention that my Nanna is also in isolation as mrsa was found on her catheter site - I dont know if this is something to be concerned about or not but the hospital staff dont seem unduly concerned so I’m thinking not.