I understand both your concerns and frustrations. It is more the alteration on Quality of Life that impacts most of us.
Our story is a little different as we are not dealing with specific diseases as you both describe, which are far more serious IMHO, but an ongoing complication from major surgery which was ignored by nursing staff and surgeon until discharge initially 3 weeks post operatively in a private hospital. He was very sick at the time of discharge, but was adamant he be allowed to come home. Within 24 hrs he became so unwell i had to call the ambulance and had him readmitted to a public hospital where he was diagnosed as very seriously ill and required emergency surgery for a pelvic abscess and peritonitis following an undiagnosed paralytic ileus an electrolyte imbalance.
He had had 2 admissions to ICU, 1 post operatively and the second for severe dehydration, malnutrition and bactaeremia 8 days later, resulting in an acute kidney injury. He had a near death experience the day he was readmitted, and the suggestions by the intensivists were over ridden by the surgeon. He refused to agree to a CT scan, not once, but twice, which would have diagnosed what was painfully obvious.
His initial surgeon told our oldest daughter he had had a 'haematoma', wirh no mention of infection. He visited on a regular basis during his stay in the public hospital and sent me texts to say how much better he was! He had direct contact with the General Surgery Team however.
After a lengthy stay in hospital he was discharged at the end of last year. It was not until I noticed his most out of character reactions to things that had never bothered him previously and his severe anxiety when he I was not in his sight that I did my own research and found out about PICS and this group.
We are 5 months down the track with no guarantee things may improve. His abdomen remains distended and his bowels have never returned to normal, some days rendering him housebound. I now understand the term 'Anal Fixation'!!!!
Once discharged people generally felt he had recovered and even our 3 daughters who do live locally, who gave up so much of their time during his hospital stays, have withdrawn somewhat. He has been heavily involved with 2 NGO's (Non Government Organisations) State Boards for the past 12 years and has had to standown, as he is unable to fulfill his judiciary duties. It is as if he has had a leg amputated and I am expected to provide all support and any physical duties. It has been a nightmare. I resigned as a casual RN to support him for the suggested 6 – 7 week recovery period, not expecting it to be months with no real resolution in the short term. My real job now is caring for him.
On a positive note he has shown slow signs of progress and has been able to contribute to one of the NGO's from home, close to the toilet which has returned some value to his life and good for his mental health. Keeps him out of my hair a little, but he remains dependent in many aspects. He has last week regained his confidence to drive with me beside him for encouragement.
My heart goes out to you both and guess I need to vent too. Your stories are rather heart rendering and it can be no coincidence we have found our way here. Take care of yourselves which is not always easy I know. Hugs to you both from Australia. X