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mom2w
Newbie

Reged: 07/23/13
Posts: 13
Update: Son has low red blood count
      #273233 - 07/31/13 09:24 PM

Hi all,
My son's wife and I accompanied him to his second Dr. appointment yesterday. This was a scheduled 2 week check. During his checkup it showed he was running a fever of 101.2.

The Dr. called back last night reporting his red blood cells were low.

She instructed his wife to discontinue the Dapsone as Dapsone can cause low red blood count.

His wife was to take him to ER, (Thursday) for another blood check and possibly a transfusion.

However, this morning he was shaking and his fever spiked to 104.
She was advised to take him to the ER.

They admitted him and so far, he is on his 3rd pint of blood.

They are also, checking to see if there is also another infection causing the fever.

He did feel better after the first transfusion and ate something. He has not been able to eat the past few weeks due to the nausea and frankly he said his food taste terrible.

We should hopefully know more tomorrow.

They have discussed a spinal tap, but do not know for sure if they are actually going to do this. I think it depends on if they can detect anything in the blood they drew today.

Thank you again for your being on this forum, for reading and being there.

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anotherday
Moderator

Reged: 05/15/13
Posts: 283
Loc: Alberta, Canada
Re: Update: Son has low red blood count new
      #273234 - 08/01/13 12:10 AM

Oh mom,

It is going to work itself out, you and your family have all of us here praying and hoping things work out, your not alone, W is not alone ... stay strong, stay focused, stay with us!!!!

HUGS always!!!!

--------------------
anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1653
Loc: Jersey Shore
Re: Update: Son has low red blood count new
      #273247 - 08/01/13 07:43 PM

I know this isn't easy for you mom. Your son is sooo blest for having you by his side. Thopughts and prayers for strngth and recovery.....River

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mom2w
Newbie

Reged: 07/23/13
Posts: 13
Re: Update: Son has low red blood count new
      #273268 - 08/02/13 06:45 PM

Thanks River and anotherday,

W was discharged Friday. His red count is apparently steady after his transfusions. His physician does feel like he had a reaction to the Dapsone.

At discharge his Dr. prescribed four other medications...but his wife has not e-mailed me the exact name of the drugs so just not sure what each one is targeting.

He did test positive for CMV. I'm sure one of the new meds or maybe two of them are for the CMV.

He is having his eyes checked tomorrow to rule out CMV retinitis.

I talked to him by phone, today ....his voice is stronger and he said he and wife were going out for a short while, shopping.
His wife, said his walking appears less shaky and his shows a slightly faster stride.

He told me he is not near "there yet"!

I told him the one thing I want to hear him say when I ask him "how he is feeling", is "Mom, I'm feeling really good".

He told me "cannot wait to say those exact words".

I'll post his progress as I know more.

______________________________________________
Brief history for "W".
Presenting labs July 15, 2013 and diagnosis were:

T-cell count 4.

Viral load 500,000.

He started his medications July 16, 2013.

Starting Meds:

Dapzone, 25mg. 2 tabs AM *******discontinued 7-31-2013 for possible negative reaction.

Sustiva 600mg.
Truvada
2 tabs PM.


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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1653
Loc: Jersey Shore
Re: Update: Son has low red blood count new
      #273272 - 08/02/13 07:02 PM

I am glad that he is doing better. CMV is nothing to play with . Right now with his immune being soo low he really shouldn't be out and about that much. How is your relationship with his wife? I ask because it's important that everyone works together. Please tell her to stay home more than going out till his sysmtem is stronger.

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mom2w
Newbie

Reged: 07/23/13
Posts: 13
Re: Update: Son has low red blood count new
      #273275 - 08/02/13 11:40 PM

Hi River,

Thank you for the information re: staying in.
I'll surely mention this to them tomorrow.

My relationship is very good with my DIL.
She and I have teamed up as his main support and we know how much we will need each other to help him through this crisis. They have been married for over 23 years.

I live a good distance from town and it is not possible to see them every day. However, I will be able to take him to many of his scheduled appointments so his wife will not lose too much time from her work.

I am blessed with three great children..... we have always been close and supported each other, no matter the problems. Of course, there are the times we had to step back, as with all families but I cannot imagine us ever leaving each other.

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anotherday
Moderator

Reged: 05/15/13
Posts: 283
Loc: Alberta, Canada
Re: Update: Son has low red blood count new
      #273278 - 08/03/13 12:16 AM

Hey mom,

You are so blessed, a fantastic family ... with all this W will do amazing ... like River mentioned, unless he is on antibiotics too, avoid too much out and about time. It doesn't take much for a flu bug or something to start raising cain in his yet fragile condition.

Stay strong my dear and know we are out here praying and cheering you folks on. It is so good W is making progress by leaps and bounds!

--------------------
anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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