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  #1  
Old Sun Nov 20, 2011, 03:56 PM
Julianna Julianna is offline
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Worried about fever

Hi all! Havent been here for a while. Been quite well, generally. I've been knocked down again with a mystery illness and now getting fevers again. I was in hospital back in March for 2 weeks to try & fight something off. It's these dreaded viral infections! Dr's can't do much to treat you. I needed blood transfusions last time I had fevers, not sure why my body acts this way. I'm not usually transfusion dependant. Hope this fever will just pass. Hate it!
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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Old Sun Nov 20, 2011, 04:00 PM
Julianna Julianna is offline
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Is fever really a bad thing? I'm sure it's my body's good response to help fight. Should I be taking medication to reduce fever or leave it take it's course?

Or perhaps just go to the Dr! MDS & infection arent a good combination I guess. Need to be careful. Thanks for listening.

Take care today all. xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #3  
Old Sun Nov 20, 2011, 07:58 PM
Mary4Mike Mary4Mike is offline
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Have your doctors given you a threshold on how high you can let your temperature get before going to the hospital? They always told my husband to head to the ER if he hit 100.1. Often it would spike over that. I wouldn't fool around with this if you have an infection brewing. I am assuming your doctors are on top of your care in dealing with this. I believe that in a healthy person, a fever is your body's way of dealing naturally with infection and that suppressing it isn't always the best thing to do. This is not the case with you. I wouldn't fool around with this. Inform your doctors of this fever if you haven't already.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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Old Tue Nov 22, 2011, 09:51 PM
Julianna Julianna is offline
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Thank you Mary. I still dont feel very well and I went to the Dr. I'm waiting for blood results to get back. My fever tends to spike in the afternoon/night more often. However, I'm taking pain relief regularly so I think it's helping.

Just wish I would start to feel better. Better at home and comfortable than in hospital anyway. Some of these infections are really nasty. And the fatigue is horrible. Anyway, I'll stop complaining. And hope I begin to win this fight really soon!

However, its so hard to focus on positives when you know that your body doesnt have the "oomph" to fight these things well. It seems that it just takes longer. At least my temp goes down and doesnt stay high for long. Thank you for listening to my rant.

Next Dr appointment is on Friday. And they havent called me with any news, so must be ok for now.
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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Old Mon Nov 28, 2011, 11:33 AM
Julianna Julianna is offline
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It's been a week since fevers started. I was in hospital over the weekend. Home now with fever still present. I have the white cells & neutrophils to fight with. But my Hb has dropped to 90. Not sure why. Seeing Hemo Dr tomorrow. I found it really difficult at our small country hospital, worried that the drs didnt know enough about mds. They couldnt help much anyway. Why do i feel so unwell?!
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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Old Mon Nov 28, 2011, 11:37 AM
Julianna Julianna is offline
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Unhappy

Anyone else had mystery fevers like this? Does it have anything to do with my mds? Or just a nasty virus that keeps coming back?

Just really like to feel better. ):
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #7  
Old Wed Dec 7, 2011, 05:02 AM
Julianna Julianna is offline
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Ok, so it seems like not many people here have experienced this mystery virus with fevers thing. I ended up in the Melbourne Hospital (far from where I live) and they did lots of tests, scans and bonemarrow biopsy. Feeling better after 2 units of blood. Most tests didnt show anything.

I'm back home now and still waiting on some results. I've been home a day now and feeling a bit better each day. Fevers still slightly present. Very strange. So fever & infection send my Hb down... not sure why.

Have another appointment on Friday with my specialist. Hope they have some answers for me. If not, I guess it's just more watching and waiting as usual. Very bizaar though that the same illness has struck twice this year and ended in a similar way. At least last time I got better and felt great in a few weeks. Here's hoping!
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #8  
Old Wed Dec 7, 2011, 05:28 AM
Chirley Chirley is offline
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Hi Jules, sorry to hear you've been sick.

Believe me when I tell you, I know how frustrating it can be when tests aren't diagnostic. It's hard to just accept that complete trust that things WILL get better without a diagnosis, and hoping that the treatment is appropriate.

Did your BMB show any changes from the last one? Platelets holding up? When I had an infection in the Achilles tendon my Hb dropped 20 overnight and for the first time ever, my platelets dropped as well. The doctor told me that fever can cause the red cells to die quicker and the platelets were being attracted out of the blood stream and into the area around the infection. Hence the blood count drops.

I think you've been doing really well on the watch and wait plan. Hope it continues.

Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
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Xq 8.21 mutation
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  #9  
Old Wed Dec 7, 2011, 01:15 PM
gatorback gatorback is offline
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Although it is common knowledge that fever is a response and potentially dangerous, my family has endured the damage that a fever can deliver (irreversible brain damage).

Be sure to confer with your physician as to what is the 'danger zone' and have a response plan. This could be as simple as cooling yourself with a towel soaked in ice water and taking a cold shower.

Be proactive with your health care provider improves the level of health care you receive: if you show that you care about your health then they will be more involved.

Understanding the root cause of the fever is critical to your long term well-being and avoiding serious consequences. Here's to your good health and recovery.
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  #10  
Old Thu Dec 8, 2011, 01:31 AM
Julianna Julianna is offline
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Thanks for your replies. It may take a few weeks to get my BMB results back. Cytogenics anyway. But I should get some idea tomorrow if any concerns showed up yet.

Yeah, amazingly my platelets have gone up! How strange! I'm not complaining... but the Drs are continually asking if I have bleeding anywhere. Which I dont. So must just be a miracle. And I'm greatful.

Still having slight fevers. Not too high - 37.8 this afternoon, which is ok. Pain relief is helping. Just wish I felt my normal self and not so exhausted.

Thanks for the well wishes and being there to chat to. xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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