Suggestions for living as an immunocompromised person... been hospitalized for bacterial meningitis, sepsis, and pleural effusion 9 days.

[JennerLayne]

Looking for tips to stay positive and safe in the midst of existing on immunosuppressants. Just started Aza two months ago and have found myself near death this week with sepsis and bacterial meningitis. How do you find the balance between accepting drugs to prevent further liver inflammation /damage and putting yourself at greater risk for other diseases? When I told my husband a week ago that I needed to visit the hospital and to call the ambulance, I sure never expected this illness to be so incapacitating and significant. I am about to be released with a midline IV and trained to give myself antibiotic infusions plus I’m going home on oxygen which I normally don’t have. Thankfully they are setting me up with some good home health care and support.

[Str8jacket]

No good tips from me on staying positive but hope you feel better soon.

[Worrysome1 in reply to Str8jacket]

How are you doing?

[JennerLayne in reply to Worrysome1]

Well, to be honest it was a scary week! I felt really vulnerable to death and worried deeply about the slow recovery. This long hospital stay in the high care unit really made me focus on how strong I will need to be physically, mentally and emotionally should I get to the point of transplant. I have cirrhosis from PBC/AIH and also have Sine Scleroderma (more damage toward organs than skin).

This AM, I had to go to a class to learn how to give myself antibiotic infusions at home until the 20th. And, I’m now on at home oxygen and don’t know the extent of the lung damage from the plural effusion/ pneumonia.

It’s a lot to take in on having liver disease and feeling as though I could be ‘attacked’ at any point from a lurking virus, bacteria or fungus. I don’t want to turn into someone afraid to carry on life, but don’t think I could handle this type of illness again!

[Worrysome1 in reply to JennerLayne]

You sound like a very brave person and so strong. I hope you have a brilliant week next week, well on the way to full recovery. Xxxxxx

[Hidden]

Really sorry to hear you are having such a difficult time at the moment. It is indeed hard to stay positive in these circumstances. Is there a plan to re review you with regard to liver transplant? As I am sure you know, searching on the internet for tips to stay positive produces thousands of results, some of which are distinctly unhelpful! There is nothing quite like getting the experience of someone who has been through/is going through the same experience as you. I do hope someone in this forum will be able to do this for you.

regards