More good news - and smoother sailing!

Ron met with his ENT today - to go over the results of the CAT scan of Ron's sinuses.  Everyone has been concerned the Mucormycosis had set up residence in his sinuses on the way to his lungs.

Dr. Dockery gave Ron the great news - no Mucormycosis in his nasal passages.

He followed up by saying he has treated Mucormycosis - and said - that if Ron had Mucormycosis - he'd be seing Ron in the hospital - not in his office.  Mucormycosis eats tissue and ravages the body.

So now we're wondering - what's going on in Ron's lungs?  Mucormycosis grew from a culture taken from Ron's lungs in June - Ron is being treated for the disease - and thank goodness not showing any symptoms of the disease; we'll find out - in approximately 5 months with another CAT scan of his chest.

Ron is feeling great - better than he has in months.........so we're sailing smoother seas and heading for open water!

TGIF

It's a good Friday.  Ron hasn't had any hallucinations today - hopefully he'll make it through the night without the 'little men' staring at him through the windows!

A CHANGE IN MEDS

Last night was rough (drug combo of  Voriconazole and Prograf), Ron's hallucinations included: someone parked a tractor trailer on our street which it was filled with men in white clothes, the men came up the driveway and stood around our cars - got in Ron's car.  They stood at the windows and stared at him all night, he saw the door knob jiggling and there were bunnies on the sofa. Someone scratched their initials on the refrigerator door.   He paced the floor all night.

Today he had a conversation with our daughter-in-law and her friend - in our livingroom; there was no one here. To convince him, I told him to look out the window to see if Brittany's car was there - it wasn't.  A snake was sitting on our china cabinet - with a large mouth and big eyes.

NOW THE GOOD NEWS

We just received a call from Beth (post transplant coordinator); she spent the majority of the day getting doctors/pharmacists together - and they have a new plan. YAY!

Ron is to stop taking Voriconazole; tomorrow he'll begin a new drug, Posaconazole, and it doesn't cause hallucinations!!!!!!!  Posaconazole is the second choice, and the last choice before IV anti-fungal drugs.

It may take several days for the hallucinations to go away.............but they are going away.

I don't know what we would do without our Beth!

Mucor - A Nasty Little Booger!

A new adventure!  MUCORMYSOSIS (a.k.a Mucor)

Mucormycosis (also called zygomycosis) is a rare infection caused by organisms that belong to a group of fungi called Mucoromycotina in the order Mucorales. At one time these fungi were called Zygomycota, but this scientific name has recently been changed. These fungi are typically found in the soil and in association with decaying organic matter, such as leaves, compost piles, or rotten wood.

This is a VERY rare disease - you and I, with healthy immune systems fight off this organism (fungus) with no problem; but someone like Ron who has a weakened immune system (due to the anti-rejection drugs he must take to keep his liver) can be infected with it.  Without treatment, this is a deadly organism.

This all goes back to the cardic visits of  May and June (2012); with fluid in his lungs and around his heart; his medications were changed and he was seen by a Pulmonologist, who did a lung biospy.

Ron's anti-rejection drug was changed from Rapammune (causes fluid build-up) back to Prograf (the original anti-rejection drug he took in the hospital right after surgery - this drug caused hallucinations)

In July we were told the lung biospy had grown Mucor.  The liver team has never treated anyone with this infection - so there are many doctors involved in Ron's treatment;  (liver, lung, heart, ENT, and an infectious disease doctor) watching his progress.

There are very few treatments for this infection - their drug of choice (and the best) is Voriconazole (a.k.a. V drug):   is a triazole antifungal medication that is generally used to treat serious, invasive fungal infections. These are generally seen in patients who are immunocompromised, and include invasive candidiasis, invasive aspergillosis, and certain emerging fungal infections.

Ron began taking the V drug, Thursday, August 9th. 

Friday, August 10th, Ron began having hallucinations: spots on people, objects moving - while sleeping very 'physical'  hallucinations: he became lost in the bedroom and couldn't find his way to the door, threw a bedside table over (trying to steer his car - because he was crashing), a cat on the floor at the foot of our bed (white plastic bag), a little girl sitting with the cat............he taps me awake just to say, "I'm sorry for waking you up."  He has 'telephone' conversations with people who aren't there. During the day, he sits quietly and rarely speaks.  The drug works on the central nervous system.

Today he went back to the liver clinic for blood levels.  This is their explanation:  The V drug increases (10 times) the affect of Prograf (anti-rejection drug) - the high levels of Prograf is what is causing the hallucinations, so they have reduced his Prograf and told him he must continue on the V drug.  The liver doctor again, explained how deadly this disease is.......this is not a choice for us (to go off the drug).  Ron will be on the V drug for 6-12 months.

Ron really isn't himself - today is our 20th wedding anniversary and he didn't remember.