Cryptococcal Meningitis

[Angiepkd]

About a month ago, I was diagnosed with cryptococcal meningitis.  It took one visit to transplant clinic and 3 trips to the ER before I was finally diagnosed.  I spent almost a month in the hospital and nearly died.  The preferred treatment for this fungal meningitis is IV amphotericin B.  This is an awful medication that destroys your kidneys.  I am very lucky that I suffered very minimal damage to my kidney, and my neph thinks I should recover any lost function in time.  After a week at home I ended up back in the hospital for another week due to double vision.  I am now back home and on a very high dose of diflucan, an anti fungal med, and a much reduced dose of anti-rejection meds ( only Prograf 2/1).  Has anyone else had this type of meningitis?  I am still exhausted and struggling to do much of anything around the house.  It's like my leg muscles have given up!  Any input or experience with this awful illness would be greatly appreciated!  Thank you.

[MooseMom]

I have no experience with this and so have nothing worthwhile to share, but I am so sorry this has happened to you.  It sounds horrific, and I am very glad to hear that your kidney should be OK.  I am glad you recovered to the point that they'd release you from the hospital.

I seem to remember that Cariad had several bouts of meningitis.  I want to say that one was bacterial and one was viral, so I don't think she had fungal meningitis, but I could well be wrong.

I can't imagine what you've been through.  I'm assuming you will have follow up appointments.  Can you tell us more about what's going to happen next?

Do you have any idea at all how this fungus got into your system?

[jeannea]

Holy crap! That is awful. I'm not surprised you're still feeling like a wreck. I'm sure this will take time. The month in the hospital is why your legs are weak. Once you feel better they can prescribe physical therapy. I hope your kidney stays strong. That's quite a catch-22. Take good care of yourself. Lots of rest. Fluids and healthy foods. I'm so sorry this happened to you,

[cassandra]

Oh Angie I so hope you'll keep getting better. I'm sorry I can't help you with your question.

Lots of luck, and love, Cas

[Angiepkd]

Thanks, all!  I have follow up appointments with the infectious disease doc and a blood disorder doc next week.  The amphoteracin B also kills your platelets, and mine were down to 55 and they should be between 150 and 450.  This is why I have to follow up with the blood specialist, and also could be the reason I am so fatigued and exhausted.  The numbers are slowly coming up, so hopefully that problem will resolve itself.  The question of where I picked up this nasty fungus is a tough one to pin down.  Cryptococcal spores are found almost everywhere.  They are in the soil mainly, and are more prevalent where there are lots of bird droppings.  The infectious disease doc said I was probably exposed within 4-6 weeks of getting sick.  I have certainly not been doing any dirt work or gardening in the winter temps, but we do have a wood burning furnace that I tend to during the day.  A lot of the wood we burn has been down for a while and does have dirt on it, so that is our best guess as to where it came from.  I will probably never know for sure.  My prognosis is good, but the transplant team and infectious disease doc will have to decide when they feel it's safe to start increasing my anti-rejection meds again.  Both feel it is too soon at this point.  I may have to continue a low dose of the anti-fungal medication for the rest of my life to keep the infection in remission.  I am going to ask a lot of questions at my appointments next week!

[iolaire]

but we do have a wood burning furnace that I tend to during the day.  A lot of the wood we burn has been down for a while and does have dirt on it, so that is our best guess as to where it came from.  I will probably never know for sure. 

I hope you continue to recover.  I'd be interested in their recommendations re the wood.  Is that now a no-no for you, or do they suggest you wear gloves etc...

[MooseMom]

Angiepkd, after your first post, I found out more about your malady and discovered the information about the spoors and bird droppings.  I had no idea.  I mean, birds are everywhere, and so are their droppings!

Following on from Iolaire's question, along with gloves, do you think your docs might recommend you wear a mask in future when handling the wood?  I guess there are no obvious answers if no one knows how this fungus got into your system in the first place.

I feel really bad for you, but I must admit this is all really really interesting.  If you wouldn't mind sharing what your docs tell you at your next appointment(s), I'd love to hear it!

Wishing you a VERY speedy recovery.  Please update us often to let us know if you feel better with each passing day.

[jeannea]

I'm with MooseMom. Please let us know about your progress.

[SooMK]

I hope you're on the mend soon. I stopped sticking my finger in my plants to see if they need to be watered but I didn't think twice about throwing a log into the fireplace. Thanks for sharing this and feel better soon.

[Angiepkd]

Thanks for the support!  The infectious disease doctor said no more handling any firewood for me.  This really stinks because it means I have to run my furnace!  I will post after my appointments next week.

[MooseMom]

Thanks for the support!  The infectious disease doctor said no more handling any firewood for me.  This really stinks because it means I have to run my furnace!  I will post after my appointments next week.

When you have your next appointment, might you ask if you could still handle firewood if you wore a mask and gloves?  Or would it still be just too much of a risk?  Is there anyone else in your family who could handle firewood for you?  Husband, perhaps?

[jeannea]

I'm actually wondering more about the burning that the handling. I am ignorant as to how this is spread. Do you get it on your hands then touch your mouth? Or do you breathe in the spores as they are burnt? Someone must know.

This is another one that makes us all want to hide in a bubble and never come out. They'll find me in a few years mummified in my dusty home. (I hate dusting.)

[Angiepkd]

My husband takes care of the fire when he is home, but the furnace runs during the day.  I am a little nervous about handling the firewood even with a mask and gloves.  I don't ever want to get this again!  It was far worse than anything I have dealt with over the past 4 years.  The spores are airborne and have to be inhaled to contract the infection.  Since our wood stove is in the basement, I don't worry about breathing in any smoke, but if I was putting the wood in I would be more likely to have exposure.  The whole experience has me freaked out about every potential germ I could come into contact with.  It's not how I want to live.  I'm hoping it gets better as time passes.

[Deanne]

Oh no! How did I not see this before? It sounds awful. If it's from the wood and the wood stove is in your basement, can you stay away from the basement entirely, at least for a while? I worry that spores might linger , or might be in a whole batch of wood and start floating around the air again when they're disturbed.

[Angiepkd]

I am steering clear of the basement.  Going to ask more questions when I see the infectious disease doc on the 19th.  I will post more when I have more answers.

[McKay]

SO sorry about your complications.  We receive so much conflicting info on post-transplant precautions!  One book says this,  one doctor says that.  My husband's trp. team seems fairly lax to me, being a nurse.  The three trp. nephs rotate every two weeks,  and even they have differing advice.  We do have a wood stove in our living room,  start a fire first thing each morning.  I have insisted my husband wear a mask and use both fireplace gloves,  but am somewhat alarmed to read about this.  He can't wait to start cutting firewood again (we live on forested acreage), once he's off the weight-lifting restrictions.  All the nephs say it's OK,  just wear mask and gloves.  It will be interesting to hear how things go for you Thursday,  I hope you're doing better each day and are able to relax a bit about all of this. 

I need to figure out how to add a summary.  This is my first post outside of Introduce Yourself! 

Thanks,  McKay

[jeannea]

Welcome Mckay. We notice here a lot of different advice. It can be frustrating. Maybe you can show your husband this post and convince him to take precautions.

[PrimeTimer]

Crazy thought here....but I wonder if insects carry/feed on bird droppings and then move their "prize" to another place to store or to discard, places that we humans end up unknowingly coming in contact with. Years ago, I once watched a nature show about ants that marched miles from their colony to the tops of trees to get certain leaves. They would carry the leaves back to their colony, harvest something off the leaves that they liked and then discard the remains of the leaves out the "back door" to their colony, whereas other worker ants came to pick up the "trash" so to speak and carry it off for them. It was shocking all the work they put into it Anyways, just wondering if perhaps the source of the fungus isn't necessarily the obvious. Maybe it's something that can be prevented from recurring by using a different source of firewood. So sorry this has happened to you! Sure hope you are doing better and that all of us can learn something from this.   

[Angiepkd]

I didn't think about the insect possibility, Primetimer.  That is an interesting theory, and we definitely have plenty of bugs around here.  McKay, I wouldn't worry too much about the wood stove.  I was told it was fine to use my wood stove.  This was a fluke.  The week before I started having symptoms I had an awful stomach flu, and I think my weakened immune system couldn't keep up with the new cryptococcal invasion.  I went to the infectious disease doc yesterday and he was very positive about my improvement.  I still have cryptococcal antibodies in my blood, but none in my spinal fluid.  He said unless I get down to 0 antibodies, I will need to continue on the fluconazole anti-fungal meds, maybe for the rest of my life.  He also said my fatigue will continue for several months.  His rule of thumb is every day spent in intensive care equals a week of recovery time.  I spent 3 weeks in ICU, so I have a long way to go. 

[McKay]

Thanks, Angiepkd for taking time to respond to my thoughts, and to update us,  when you have so much going on.  It sounds like you are on the right track,  yay for the ID doctor's progress report!  You will get stronger day by day.  Prayers for healing,  and patience, right?!?    Your tummy bug certainly would have opened the door to the crypto bug.  Reading these posts has helped me/us so much,  which of course is the point here!  We saw my hubs'  team yesterday,  labs strong and steady at 6 wks.  Once again, though, they gave mixed messages regarding wood.  I mentioned crypto,  and the nurse coordinator said typically they'd be more on guard for respiratory fungal infections, which are difficult to treat.  Her thought was more about the cutting/splitting of firewood - and breathing in that dust/debris,  rather than handling wood for daily heating.  Still,  I will insist Bill wear mask and gloves,  and especially once he returns to being a lumberjack!   

Steady as she goes,  as far as recuperation is concerned.  You are 'tough enough',  so give yourself a break. literally and figuratively.  You have been through the mill.  Wishes for nothing but good news ahead! 

[Angiepkd]

So...the infectious disease doc did labs at my visit last week.  My cryptococcal numbers were going down, but my creatinine was 1.7.  They contacted my tx team who called me to say I had to check back into the hospital.  Spent 3 more days there, and prior to being released had an episode where my heart was beating really fast (200+ bpm).  They insisted on doing an EKG which looked awful.  Just as they brought in the crash cart, it went back in rhythm.  Next EKG was normal.  I have these little episodes once or twice a year, but no one ever caught it on the EKG.  That event earned me a night on the heart floor with a monitor.  All was fine and they let me go home with a follow-up appt with a heart specialist.  The following day I had an appt with the dermatologist for a rash on my legs and my first whole body check since transplant.  My skin check was good, but she wanted to biopsy the rash because of being immunosuppressed.  10 numbing shots and 3 stitches later, I left with a script for a cream to help the rash.  Now I get to wait a week for the biopsy results.  I am hoping this is my last hospital visit, as I have spent 26 of the las 60 days there.  It's all good, though.  Keep on keepin' on!  Thanks for all the responses.   

[MooseMom]

Ok, so, with a creatinine of 1.7, your tx team wanted you to go to the hospital.  What did they do once you got there to bring down your creatinine?  Did they suspect rejection or something? 

Man, you have really been through the wars and you deserve LOTS of time at home and away from anything that even remotely resembles a hospital.  I hope you have a nice weekend.  Try to do something nice for yourself.  You've earned lots of treats!

[okarol]

  Hope you continue to improve!

[Angiepkd]

Ok, so, with a creatinine of 1.7, your tx team wanted you to go to the hospital.  What did they do once you got there to bring down your creatinine?  Did they suspect rejection or something? 

Man, you have really been through the wars and you deserve LOTS of time at home and away from anything that even remotely resembles a hospital.  I hope you have a nice weekend.  Try to do something nice for yourself.  You've earned lots of treats!

The team wanted me to have IV fluids and see if the levels dropped.  The tx doc was pretty sure it wasn't rejection, but wanted a biopsy if my creatinine didn't come down.  Rejection is always a possibility with me since the cryptococcal meningitis, as they have greatly reduced my anti-rejection meds to allow my body to fight the infection.  The creatinine dropped to 1.2, and I had a UTI, they decided I was a little dehydrated and my body was trying to fight too many things at once. 
I have stayed in all weekend and feel much better.  Next week, 3 doc appts and labs will keep me busy for 4 out of 5 days.  Hopefully, everything is back to normal!  If not, I will be sent back.  Thank you and okarol for the well wishes!

[MooseMom]

The team wanted me to have IV fluids and see if the levels dropped.  The tx doc was pretty sure it wasn't rejection, but wanted a biopsy if my creatinine didn't come down.  Rejection is always a possibility with me since the cryptococcal meningitis, as they have greatly reduced my anti-rejection meds to allow my body to fight the infection.  The creatinine dropped to 1.2, and I had a UTI, they decided I was a little dehydrated and my body was trying to fight too many things at once. 

I think my creatinine went up just reading about all you've been through! 

I'm very glad to hear you've been feeling better, and I look forward to hearing more about the results from your upcoming appts and labs.  I hope you don't think me intrusive, but I really do want to know how you are doing and what your docs have to say.