Hello, my husband is since two weeks in hospital with Cryptococcal Meningitis.
He left Intensive care a few days ago. is anyone out there who is going through the same stuff?
I realise that this will be a long way of recovery and it would be nice to share it with someone who is in the same position. He is Immunocompromised and seems to get the encyclopaedia of strange diseases. It is early days, but the whole thing is and was very scary.
Hello!Although my husband has had a different type of meningitis, he spent 2 weeks in critical care and now( 3 months on)
Is making slow but steady progress.
He is still in hospital, now waiting for a rehabilitation place in a specialist facility.
If you read through my posts and replies this will give you more information about his journey so far.
Things I have learned from communications from survivors and relatives on this site are as follows-
- Stay positive
- Be really, really patient as it's a very slow journey
- don't project too much into the future.
Good luck , wishing for a steady recovery xx
Thank you for your kind words and your summary of the things you have learned. They are valueable tips. Because I got a bit frustrated with the doctors telling me all the positve things and how his “numbers” have improved but all I saw in front of me was an old man (not the good looking handsome funny guy, he was a month ago), who uttered weird random words with hardly understandable slured speech. What he said was funny but not intentionally. We have good hospital care here in Austria and we are very blessed to have caught the decease early enough and I am happy and greatful that we are at a stage where other people only have been after 3 or more months…. But I am really tired because my hospital journey with my husband started 12 years ago, and now this….. THANK YOU for finding time to replying to my post.
Well not currently active, but I was slammed by it back in 2018. Took over 2.5 yrs of daily treatment to finally get rid of it, but of course the damage is done and pretty much permanent at this point. I will be glad to answer any questions/concerns if applicable as every case varies, but similar in many ways.
Have you been immune compromised as well? My husband has a nin Hodgekinson Lymphoma and it seems that his Medication has wiped out his immunesystem. He is the first person in the hospital with cryptococcal meningitis. And nobody seems to know anything other than…. It will take long….which infusion did you get? Matthew gets Ambisome, but they told me that there is a better treatment out there which they can’t get in Austria. Looking forward to hear from you.
Yes indeed, was told by Infectious Disease that my system was compromised by long term corticosteroid use for asthma/allergies. Good luck finding Healthcare that is knowledgeable as I lost all hearing permanently as well as quite a few other permanent issues as it dragged on for months being overlooked repeatedly.
Had two rounds of being hospitalized being given flucytosine (oral) and amphotericin B (IV like u mentioned). Took two hospitalizations about 5 months apart followed by at home treatment doing the same meds. Along with that I was on flucanazole daily for just over 2.5 yrs. Keep in mind that those antifungals are necessary, but can be damaging in the process.
Any other questions or concerns definitely mention as it is a very debilitating illness and long recovery. Will gladly answer what I can.
Seems hat you have quite a similar story as my husband. He started of with Asthma, all sorts if Autoimmune deceases, M-gus, Utekaria,… till they found a lesion in his spine (which they couldn’t take a biopsy of) and finally diagnosed him with Morbus Waldenström even though he has not really any symptoms of that decease but they found some indicatuon in his spinal fluid. He as well was on cortecal steroids for a long time which made him look like someone put a fatfilter on him. The lesion didn’t grow any bigger, but it didn’t get smaller either. When we stopped the Steroids, he went through a horrible withdrawl. The last 4 years he seemed to work himself through… the encyclopedia of strange deceases till we finally arrived at the highlight: Cryptococcal Meningitis. We have a very black humor but 2 weeks ago I lost my humor for a few days… it is back now….
Yeah reads like quite similar scenario... even here in the U.S. cryptococcal is barely understood. I was in a brain injury wing both times and they seemed impressed it was happening in front of them as if it was urban legend and I lived, walking on my own in a week. FWIW the hearing damage is permanent. Over time I pushed myself every day doing my own rehab at home relearning walking, talking, chewing, blinking, writing, thinking... balance and energy still affected, taste/smell recovered as did long term memory. Short term maybe 80%. Been a long 6.5 yrs, but vision wasn't affected and I function OK.
Seems like you have accepted what's going on and I will gladly say for you, him and family/friends to be patient and understanding as it won't be a cakewalk, but we live for a reason and take each day as it is.
Hi, my husband is now since a month in hospital, he is still on both antifungal drugs (IV and oral). They are very worried about infections as his immune system is really not working well. It seems that his pneumonia has "restarted" and he has caught a urinetractinfection as well... he is very very weak, has fevers and shivers. His head is clearer but his body is not doing so well. I know it will be a long way but it is hard if it is not a constant slow improvement it seems one step forward and two steps back.
Yep can relate... as I likely mentioned along the way mine was blamed on weakening immunity from corticosteroids (mainly prednisone) necessary for severe asthma. Since I was hammered from the crypto my immune system hasn't really gotten any worse, but hasn't improved either. This has been confirmed by involved antibody testing before/after vaccinations, etc. Allergy/immunology is actually recommending that I undergo antibody replacement to maximize what's left, which I haven't agreed to yet due to possible side effects. I stay as up to date as possible on available vaccinations, living on an antibiotic daily indefinitely and avoid possible infectious threats like large groups of people, that sort of thing. Almost feel like the dude living in the bubble back in the 70s, but it is what it is.
I'm 6.5 yrs post diagnosis and still have that feeling periodically of 1 step fwd and getting thumped back a few steps. Mainly from me pushing myself a bit too hard, trying to do things I easily did yrs ago whereas now the body (balance/strength/etc.) just can't keep up with my mindset. Honestly though after what I survived I get along OK as it will take a toll on most victims in various ways. Just take each day for what it is and be OK with his new normal way of living.
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