What does this mean?

[anonymous]

My sister-in-law has CF, she's 38. For the past 4 months she has been in the hospital more than out, and now they can't even kill the viruses she's getting. She has a rare form of TB apparently, and even though she has been on home IV for the past month, they just admitted her yesterday again, and now she's in isolation because her white blood cell count is so low. The doctors are even saying they are stumped about what exactly is going on. I'm scared that she has entered a phase with this disease where she will never be the vibrant person she once was again. She can only stay awake for a max. of say 4 hours at a time, and even that wipes her out. She has horrible headaches and high fevers, it's so hard to watch.

My grim question is, how do you know what this means life expectancy wise? I think my whole family is waiting for her to make a turn around and it's just not happening, and I wonder if she's just not going to turn around. Sorry this is such a sad message, but I'm feeling so hopeless lately and wondered what other people have experienced.

 

[anonymous]

I'm not sure what the headaches & high fevers would indicate. Probably some kind(s) of infection. Headaches & high fevers are not a normal occurance w/ CF that I know of. The headaches can be indicitive of a sinus infection. Have they done a scan of her sinuses?
I'm so sorry that you're family is going thru this & wish I could be of more help. I would get second opinions if you can so someone w/ a different prespective could offer some insight?
I will be keeping your sister/family in my prayers.<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Have you all thought of transplant. It can add wonderful years to her life. And if its time for that then its not necessarily a bad thing. i had a WONDERFUL experience so far and i'm only four weeks out. Let me know if you would like to e-mail and learn more about this. I am at a center where the wait time is short. Let me know
Margaret
Double lung tx 11/11/04

 

[colourblind]

Unfortunatly my daughter has "non tubercolosis mycobacterium" NTM. This has caused her headaches , nausea high intermittent fevers and a drastic drop in lung function (over a year).

These seem to be increasingly common infections and very difficult to treat ,some reports saying only surgical excision of local lung lesions resulted in complete cure. Prolonged iv antibiotics aimed at treating known sensitivities are used.

Previously this infection was thought to be of little consequence but research I have read now seems to show it to be detremental in all cases, although most pwcf do not drastically deteriorate. (some do)

I have also read pwcf+NTM cannot have heart/lung transplants as the bug is too difficult to erradicate and makes for high risk post op infections, is this true?

The fevers/headache lethargy and low white cell count can also come from growing sensitivity to the iv's used, but hopefully her doctors will be on top of those things.

Best wishes to you all , I hope everything works out .