Life beyond ITU

[Longbottom]

Hi everyone, so I’m new to this group so this is my first post. My key message is no matter how bleak things look keep fighting, life changing events can open new horizons.

I am very lucky having received first class care and surrounded by caring family and friends.

After 10 years of health service encounters, various admissions for stroke, cardiac surgery, ulcerative colitis, I started to become more unwell than normal in March 2018, with increasing medication and total immunosuppression therapy by September I was in trouble and started a 4 month vacation all inclusive in an NHS hospital. Things soon deteriorated further and the inevitable RSI, started over 70 days in ITU, on life support. After 3 operations, multiple blood transfusions, bilateral fungal pneumonia, a lacerated spleen, tension pneumothorax, toxic mega colon, E. coli, VRE infection, liver and kidney failure I started to improve and came off the ventilator and dialysis on Christmas Day (best present ever). Then started the long journey of rehabilitation, having lost a third of my body weight, the use of my right arm, removal of all my large intestine and not able to even lift my head up, let alone sit.

Months of intensive physio, hydrotherapy, 6 months of toxic medication as an outpatient I started to get stronger, more mobile and greater stamina.

The good news is by September I will have increased my work hours to full time, now walking up to six miles, done my first two caving trips, gentle mountain biking and just heading off for a week ocean sailing. I’m still having physio, decreased kidney function, close monitoring for return of infection, a numb left foot, but determined that all this is just inconvenient and won’t stop me making the most of every moment as I still need two more lots of surgery. I’m still a little mentally fragile and get frustrated that I still can’t do everything I want to, but still very very lucky.

[Hidden]

Hello there, it is so hopeful to read your post. My partner will have been in icu 7 weeks tomorrow. When things were beginning to look positive, he had his tracheostomy and was using a speaking valve, had started rehab... yesterday we had the devastating news that his gut is not responding well to the surgery he had to remove part of his bowel and has blood clots. He's survived pneumonia, sepsis, ecmo, bone marrow infection, major abdominal surgery, kidney failure. He has fought so hard against all odds. But while there is life there is hope right? Doctors say I'm not managing expectations. It's my soul mate lying on that bed, not theirs. Of course I have hope. And reading others experiences gives me a little hope that the fight may not be over yet. God bless to all who are going through this and all their loved ones.

[Copse77 in reply to Hidden]

Please believe in yourself and your partner ;you know him best. I say this as we were given very bleak news yet one consultant told us remain hopeful. I recommend reading in shock. It’s by an intensive care doctor who herself ended up in intensive care and she now offers training to doctors on how to empathise better with patients. I hope your partner continues to progress.

[Longbottom in reply to Hidden]

Thanks, hope things are improving for your partner, your approach and positive drive are so important to everyone, don’t ever give up hope no matter how bleak things are looking

[Dabofoppo]

I dont say this lightly but you are an Inspiration I work with people who are fully healthy have never been in hospital who cant/wont do the things that you are doing. To come back so strongly from what you went through is an amazing achievement well done :).

[Longbottom in reply to Dabofoppo]

Thanks for your kind words

[Copse77]

Yes your recovery and positive mental attitude is an inspiration. I hope you have a wonderful sailing holiday.