aspergillosis

[nursey66]

Anybody know if a history of aspergillosis [fungel lung infection] is a contraindication to a second kidney transplant ? Hubby's 11 year transplant was near the end of working, when he got the aspergillosis infection. He was in the hospital the whole month of July.His anti -rejection meds were stopped to help his immune system fight the infection. It is 50-60% fatal infection, & if it gets to any other organs[heart is common] it is 100 % fatal. So he is now on dialysis, was planning a second transplant already before the aspergillosis infection, has 2 willing sibling donors, was to have the transplant in Jan,2014, after a hernea repair this summer. That surgery was put off due to the hospitalization, now he wants to reschedule and gets a letter from the Transplant clinic.They scheduled a meeting with him Dec.3rd to discuss if a second kidney transplant would be a good treatment option for him, or not. His Neph [local] told him he would have to take voriconizole [anti fungel] for ever if he got a transplant. From what I find out , 50 % of people who go back on immunosupression relapse with aspergillosis.  It also says if a person takes voriconazole long term, a resistance is built up, and then if they get the aspergillosis back, there is no drug to fight it and they are lost to the desease. It seems like a catch 22. I guess thats what they want to talk to him about ??   His Neph is local, the Transplant Drs are 100 miles away .Anybody out there have any experiences or knowledge about this ?? So hard to wait till Dec 3rd. Thanks

[amanda100wilson]

 I have a friend who got it into her spine post transplant.  It destroyed part of one of her vertebrae.  To deal with it they had to reduce her meds to the bare minimum, to the point that there was a risk that she would lose her kidney.  I  kniw that it was serious enough that  losing her transplant was considered an acceptanle option over the alternative of not dealing with this infection.

[nursey66]

Thanks, I know they were worried he had it in a heart valve ,too, when he was in the hospital, & Drs were very relieved the tests showed NO vegitation !!! Seems to be very rare, odd he would get it 11 years out on a transplant. Needless to say, he is very crabby, and depressed,at this time. Says he will NOT do dialysis for the rest of his life. I'm thinking he will throw in the towel after our meeting with the transplant team. He refuses to do NxStage, I offered to help with it, and as a retired nurse, am capable, but he is adament "no".  I am at a loss!!!!

[amanda100wilson]

It is easy to make final statements, when news is new as takes time to process information, and  as you know, I am sure, denial is part of the grieving process.  I am sure that he will come around.  As my nurse said the other day, 'it sucks, but  home dialysis is the best of the sucky options'.  Maybe it would help,if he could talk to someone doing it and also see someone doing a treatment.  I am more than happy to provide my phone number through Private message if you, or he, want to talk about it (I have been doing NxStage for the last two,years), or maybe PD would be an option?

[jeannea]

I agree with Amanda. He needs time to process this news. It's very difficult to hear. Does he have a neutral party to vent to? A therapist might be helpful for a time. I'm sure you are willing to listen but you're biased about his decision of course. He needs time to grieve.

[obsidianom]

This came from an article I was reading today. It may not help much. Sorry for your misfortune.

Management

Less controversy surrounds the treatment of invasive aspergillosis and disseminated aspergillosis. Mortality due to invasive aspergillosis without treatment is close to 100%,[1] partly because of the underlying autoimmune or immunosuppressed state of the infected patients. The optimal timing of treatment could not be determined in prospective studies, but the consensus is that starting empiric systemic antifungal treatment at first sign of infection yields the highest survival rate.[1] The gold standard of systemic antifungal treatment is voriconazole, although liposomal amphotericin B seems to be a suitable alternative.[7] Combination therapy with 2 antifungal agents with different mechanisms of action may be a promising strategy,[8] although randomized, controlled clinical trials of such therapy have not been done. In fact, the combination of a triazole with amphotericin B may be antagonistic.[9] In patients with pulmonary hemorrhage, surgical resection of lesions adjacent to large blood vessels may reduce the recurrence of aspergillosis in patients anticipated to undergo future episodes of severe immunosuppression.[10]

Because of the multisystem involvement and the difficulty in confirming fungal infections, a diagnosis of invasive aspergillosis should always be considered in patients who are immunocompromised, such as those with SLE, whether or not the patients are receiving immunosuppressive therapy. Early, empiric therapy with antifungal agents should be considered in patients with SLE who are critically ill.

[nursey66]

Thanks for all your replies. Amanda, we did visit a Nx Stage clinic, had extensive education on it, he doesn't want to deal with all the supplies and reminders around the house every day. PD is out of the question, he has had too many abdominal surgeries. The dialysis clinic is just a mile away, & he likes the nurses there. It's just such a let down, not to get the transplant. Of coarse, they haven't said that yet,we will find out Dec 3rd, but it's not looking good. Thanks, everybody.

[amanda100wilson]

The use of Pureflow cuts down on supplies considerably.  Of course I do not know about your home and its layout, but I am fortunate to have a spare room, so once done, I simply close the door and shut it all away.

[obsidianom]

In my 25 years of practice I have seen this type reaction to bad news many times. Its more common in males.  Women in my experience handle this type situation better. Men are used to fixing things and not accepting defeat so they act out more . Also women often handle medical issues better than men , again in my experience.
What he is going through is like the classic 5 stages of death and dying that Kubler -Ross described in her book. He is not dying in the classic sense, but his hope of a transplant is.  The stages are  1. denial. 2. ANGER 3. bargaining 4. depression 5. acceptance.,
He sounds to be in the anger stage now and heading for bargaining. Remember, in the end there is a good chance he will get to stage 5, ACCEPTANCE and do dialysis.  Let him go through these and hope he ends up in stage 5 .
NXstage doesnt take up much room nor do the supplies. However I dont think that is really the issue. I think he is in the anger stage and needs to howl at the moon for awhile to get through this .
(I have been there myself as a male . )

[cdwbrooklyn]

Doc, you are so right regarding the stages as I have experienced all 5 when I first started out on dialysis.  I was in a state of denial that I told the doctors I will start taking herbs.  It helped a little but did not do the full job.  So I started dialysis.  I was so angry at myself and blamed myself for not taking care of myself better.  I would yell at my daugther just because she was in my present (she understood).  After people who was concerned about me told me, “ why you so angry?”,  I stopped being angry and became very depressed.  I would go to work, focus on my work, go to in-center not talking to anyone, go home and sleep.  The days I didn’t go to in-center, I would go straight to my room and sleep.  I would get paid and not cash my check.  I didn’t realize I was depressed.  Six months after, I started barginning with myself, three years after, I’ve started accepting what is (dialysis) and 5 years after, I start dating and living my life again.  It’s funny because I didn’t realize I was going through these stages.  So you are definitely right about the stages.

[jeannea]

I was very angry when I woke up from my coma and found I was on dialysis. I was upset with my mom for consenting because she knew I didn't want dialysis. Turns out they caught me in one of the moments I was acting lucid (I was not and remember nothing) and got me to consent. I don't know if I ever got to acceptance. I could only get through it by telling myself I could still quit anytime.