Hello, my mom, who is 51, was admitted to the hospital on May 8 for severe edema and joint pains. After several blood tests and a kidney biopsy, she was diagnosed with Class 4 Lupus Nephritis. The lupus was causing her kidneys to fail (hence the edema). About a week after being at the hospital, my family had her transferred to another hospital a couple of hours from our town. This is because she developed a septic E. Coli infection at the first hospital. They told us she might not be able to fight the infection, and then recommended we put her in hospice. Absolutely appalled at the idea, we had her immediately transferred to her current hospital. She’s been there since May 19, and it’s been a rollercoaster of emotions. Doctors there were able to safely & quickly remove a lot of the fluid from her body through 24 dialysis. She’s now on overnight 10 hour dialysis almost every night. This helped stabilize her blood pressure and alleviate pressure she was experiencing around her heart and lungs. She was also experiencing a lot of extreme fatigue, which worries her doctors but CT scans, MRIs, and EEGs have come back clear of strokes and seizures. They did find that she’s got encephalitis, which they believe is due to her lupus. After these findings, they started aggressive treatments for her lupus with a cocktail of immunosuppressants, but it was discovered that she also has a somewhat rare complication called Thrombotic Microangiopathy (TMA) in her kidneys. Thankfully, there’s a medicine that specifically treats TMA; they started her on that as well. The medicine, however, makes it more likely that the patient could develop meningitis. Unbeknownst to us at the time, my mom actually has had HSV-2 lurking in her body. It developed into viral meningitis, and she fell unconscious for about a 3 days. These last few days, she’s been waking up when they call her name, but she’s still not responding to commands as she previously was. A little more than a week ago she was awake, more alert, and talking. But this meningitis has really knocked her off her feet. She’s being treated with antivirals, and doctors have withheld most of her heavy duty immunosuppressants to allow her immune system to kick back in. This means she will be able to fight the infection, but the progress she’s made with her kidneys will be reversed. Additionally, she’s currently on a breathing tube. She’s doing most of the breathing on her own, but there’s concern she may stop breathing randomly due to the encephalitis and meningitis. There’s talk of giving her a tracheotomy soon...The doctors have found even more cause for concern in the last couple of days They’re worried about her mental status, they believe she could be developing pneumonia as her latest CT scan of her lungs showed a small circle that hadn’t previously been there (prior to this her lungs have come back clear), and they’re also concerned she might have bleeding somewhere. Her blood counts have been chronically low this entire time. Lupus will do that on its own, and with all the various infections she’s had, it’s natural they drop more. However they dropped pretty significantly the other day. The last time this happened, they found abnormal blood flow in her liver and she had a minimally invasive surgery done to correct it. Her ICU doctor seems very negative about this whole situation. I understand that she’s got a lot of very serious complications, but it’s so discouraging the way her doctors talk about her. They haven’t explicitly told us to give up, but it almost seems that way. Our family is very small. Our family unit essentially consists of me (24 yrs old), my mom, and my grandma (73 yrs old). It’s been an emotionally and physically exhausting time. We aren’t giving up on my mom because we know she would never, ever give up on us....we are doing our best to remain hopeful and keep praying for her recovery.
Today we’re supposed to meet with her doctors to discuss the next steps; I am absolutely dreading this conversation. Does anyone have any experience with things like this? Maybe not even lupus specifically but just the way doctors talk to you...I know they want to prepare us for the worst, but sometimes it also feels like they want us to give up. She’s been in the ICU for 6 weeks, but I know from what I’ve read on here many people can end up in the ICU for several months. Just looking for a little positivity, good energy, and many prayers. Advice is welcomed, too!
Written by
ChrissyJames
To view profiles and participate in discussions please or .
Hey, I hope the conversation with the doctors go well today. I would suggest writing down any questions you might want to ask, as when you’re in there you might forget. I’m so sorry that your mum has to go through that, she certainly seems like a proper fighter, don’t give up hope.
From my experience talking to icu doctors specifically for the past 10 weeks regarding my boyfriend, they are blunt, emotionless and mostly present the worse case scenario. I’m not talking to their character per se but that’s how they come across. I have worked in hospitals as a psychologist and both my parents are doctors and I would just advice you to keep your faith and hope, take everything they say to you either negative or positive with a pinch of salt. For the first 6 weeks everyday they would call me and tell me that Tony won’t make it, we went from 30% chance of survival as low as 5%. They talked to me about withdrawing support since week 3 just because he was taking time to improve and he was static. I’ve never heard anything positive even when there was, until they were 200% certain that this man is actually improving. Fight for your mum, don’t let them give up, take care of yourself, and if you need anything please feel free to pm me anytime.
Wow. I’m so happy to hear that your boyfriend is on the up & up now! Thank you so much for this! We’ve never had any loved ones in the hospital with such serious illness before; we are still learning how to navigate these ICU doctors. I’ve also noticed they tend to only present the worst case scenarios. Any improvements she has made get glossed over because I guess they don’t consider them significant enough. But those little improvements are exactly what give us hope; we know she will get better with much needed time and care. You’re right. My mom is a fighter, and we’re not giving up on her and we will remain hopeful. After reading so many peoples stories here, I see that it’s crucial for us to advocate for our loved ones that cannot currently fight for themselves. Thank you, again.
If you have a voice record on your phone - maybe ask to record your meeting.
What you have to remember is these guys often think out loud, they see us ( patients) as a problem to solve, an intrigue. So they can seem really negative one time & extremely positive, the next.
Your Mom sounds as if she does have a series of terrible co existing issues, I know that well. You also intend to give your Mom every chance because that is the sort of character she is, don’t forget that if and when they try and fob you off. You may have to fight your Mom’s corner, whilst she can’t.
I hope your meeting leads to a more positive attitude all around. You’ll have a few people routing for you here. Best wishes
Yes, she’s certainly been through a lot over the period of the the last month...thankfully, some good news I was able to pull from our meeting is that she’s finished her antibiotics for her E. coli infection! And she’s scheduled to finish her other medications for her viral infection within the next week. The primary focus now is the meningitis while also managing the side effects of her lupus...
I’m so sorry you have gone through this. Whilst the reasons for being in ICU may be different we all here understand the rollercoaster, the hopelessness and fear you are feeling. I don’t know about your Mom’s specific so curious but I do know that talking in statistics is meaningless to an individual only as an overall community stat. That’s the reassurance I took when I was told my husband’s chances went from 50% to almost zero within a week and we were called in to say goodbye. He left ICU this week after 80 days during which time he has had (and still has) acute kidney failure, pneumonia 3 times, clots, ventilation for 61 days and scarring on the lungs, edge of sepsis and fingers requiring amputation. Even a month before discharge he was given less than 10%. We found that he was always given the roast case scenario and weld were constantly being told he has more chance of not making than making it and there were always so many things that could go wrong. We learnt to expect the worst but hope for the best. The hope is so important, Her body may just need time, make sure they give her that xx
I’m so, so happy to hear that your husband was finally able to come home! That’s so wonderful to hear! And yes...my family and I feel like she absolutely needs more time to heal. I find that her doctors are always very anxious to see specific improvements within a specific amount of time. From their perspectives, I suppose that makes sense. But like you said, when they start talking about statistics it really does seem a bit pointless. Every situation is so unique when dealing with long term ICU patients. Thank you for sharing your story and your kind words xx
You’re welcome. He isn’t home yet unfortunately but at some point will be. He was transferred to a special renal ward in a different hospital to determine if he needs long term dialysis and for finger and thumb amputations and then will probably go back to the respiratory ward for rehab and discharge. So a tough long journey head but just knowing he is out of danger is enough. Keeping everything crossed things settle soon for your Mom and sending hugs xx
Oh, my apologies; I misread. It’s still very good to know that he’s able to leave the ICU. I know that’s a big step in the right direction. This has been a grueling and tiresome process for you all...I am wishing him a great recovery and will keep him and your family in my prayers. Thank you, as well, for thinking of my mom!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
They’re worried about her mental status, they believe she could be developing pneumonia as her latest CT scan of her lungs showed a small circle that hadn’t previously been there (prior to this her lungs have come back clear), and they’re also concerned she might have bleeding somewhere. Her blood counts have been chronically low this entire time. Lupus will do that on its own, and with all the various infections she’s had, it’s natural they drop more. However they dropped pretty significantly the other day. The last time this happened, they found abnormal blood flow in her liver and she had a minimally invasive surgery done to correct it. Her ICU doctor seems very negative about this whole situation. I understand that she’s got a lot of very serious complications, but it’s so discouraging the way her doctors talk about her. They haven’t explicitly told us to give up, but it almost seems that way. Our family is very small. Our family unit essentially consists of me (24 yrs old), my mom, and my grandma (73 yrs old). It’s been an emotionally and physically exhausting time. We aren’t giving up on my mom because we know she would never, ever give up on us....we are doing our best to remain hopeful and keep praying for her recovery. 
MY mom is in ICU
Co-vid 19 - third week in ICU for Mum
Mom long term ICU trach ventilation, ICU delirium, what can I do to help her emotionally?
Anxiety and vent weaning? Also a novel of my moms icu experience 
