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mom2w
Newbie

Reged: 07/23/13
Posts: 13
New update on son:
      #273441 - 08/15/13 10:05 AM

It has been 4 weeks into discovery and starting meds.

W is really coming along. He started picking up appetite and energy last week, then more over the weekend.

This morning (Thursday 8-15-13) he called to tell me his numbers from 8-8-13 blood work. (Current numbers below)

He is going back to work next week. He said his energy level is creeping back and at times he feels like his "old self." His endurance is slow and he does nap several times a day between regular activities.
He gained 6 lbs in the last 2 weeks.

After his 2 days in the hospital (previous post) he came home with 4 antibiotics/antibacterial meds. The Dapsone was discontinued, due to bringing down his red blood cell count.

He did have an eye appointment and there might be CMV in one of his retinas. This was reported to his physician from his ophthalmologist. The two doctors are planning his treatment. Hopefully, Valcyte will halt the CMV retinitis.

_________________________________________
Brief history for "W".
Presenting labs at diagnoses and medications started immediately: July 16, 2013.

T-cell count 3.
Viral load 582,074.

Starting Meds:
Dapzone, 25mg. 2 tabs AM

Sustiva 600mg.
Truvada
2 tabs PM.
____________________________________________
Today: 8-15-13:
T-cell - 94
VL - 4,030

Current Medications:

Sustiva 600mg.
Truvada
2 tabs PM.

Mepron susp.atovaquone 2 teaspoons daily 750mg

Clarithromycin 500mg 2x daily,

Valcyte 450mg 2 x daily,

Ethambutol hcl 400mg. 2 tabs. daily (replaced Dapsone)

Thank you for this forum!

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anotherday
Moderator

Reged: 05/15/13
Posts: 474
Loc: Alberta, Canada
Re: New update on son: new
      #273448 - 08/15/13 12:30 PM

Fantastic news mom,

Just make sure he does not over exert himself, stay rested, stay on meds, stay healthy and most important stay happy with the progress ... he will do amazingly!

All the best to you my dear, your an awesome mom and I hope W appreciates that aspect of his life too!!!

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

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1788
Loc: Jersey Shore
Re: New update on son: new
      #273460 - 08/15/13 07:44 PM

He's doing good mom , Keep up the wonderful nuturing ,

--------------------
Look up to the Heavens for the answers to Lifes questions .

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mom2w
Newbie

Reged: 07/23/13
Posts: 13
Re: New update on son: new
      #273471 - 08/15/13 10:02 PM

Thank you anotherday & riverprincess!

Today while in town, I stopped at his place to give him some tomatoes from our local garden fruit stand.
When I was leaving, I promised him I would not bug him but once a day and if he wanted I would leave him alone over this weekend.
He said "NO". I want you to call me.
His comment gave me mixed feelings. I don't want to have to call him everyday. How I wish we could roll back time!

I wish with all my heart for him and everyone that is going through this.... for all to have true peace of mind and health like it was, before.
.

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anotherday
Moderator

Reged: 05/15/13
Posts: 474
Loc: Alberta, Canada
Re: New update on son: new
      #273473 - 08/16/13 12:18 AM

Oh mom, how to explain this ... when we get HIV, as with other life "changing" illnesses and such, we get a new appreciation for who and what is around us. His "NO" could be his way of wanting you more in his life then he had before. He wants you to call everyday even just to say "hi" ... with HIV, I know for myself, I see things differently, I appreciate and respect others completely different to before.My peace of mind came with diagnosis and my health is great even with HIV. It changes us and sometimes for the better!

If you don't want to call him, that's your choice, but I bet under that tough guy exterior, after what he has been through, he would just like to hear mom's voice everyday, even just to say "hi". Don't wish to roll back time, take the moment and run with it ... enjoy that he is here, he is getting better and just know it's a new outlook that he is having, might come slowly but he is seeing things alot differently, and not always in a bad way!

With a diagnosis of "whatever" gives people the chance to reassess their lives, see where they came from and what they can change to make things better now. He might look like the same old W, but his outlook on life could be changing for the better right before your eyes!

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

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mom2w
Newbie

Reged: 07/23/13
Posts: 13
Re: New update on son: new
      #273481 - 08/16/13 08:55 PM

Hi anotherday!

Sometimes writing posts on computer/forum speak can be confusing...especially for me.

I did not mean "I did not want to call him".

What I meant is.... I do not want to call him because he is sick. I want things back as they were when my calls to him were..." "Hey, what are you doing"? or "I'm calling just to say hi".
Since his diagnosis, I call him 5-6 times a day to check on him.....I've become obsessed.

That is what I mean. I want things back as they were. I'm afraid I'm aggravating him with all my phone calls and he is too nice to tell me to back off.

I wished I could have just brought him to my house the past couple weeks to care for him. I offered but he wanted to stay in town, at his home.
It was really better for him to stay there..... because I would have worried the devil out of him.

Actually, today we talked for over two hours about "other" things. He is shopping for a new computer and another a firearm.

I know, in time as he makes progress he and I will feel more "normal" and the HIV will not be looming so heavy on our minds.


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anotherday
Moderator

Reged: 05/15/13
Posts: 474
Loc: Alberta, Canada
Re: New update on son: new
      #273482 - 08/17/13 11:33 AM

That is so right mom, he's on the mend now ... especially shopping for computers and firearms ... hunting season is just around the corner ... nothing puts HIV on the back burner for us guys than hunting season!

It's understandable for you to be obsessed, your mom, and I am sure he understands ... but remember the tough guy exterior! So just make your calls the casual fun ones again, just make the 6th call about HIV and all the other 5 the "Hey how's it going?" ones!

You are a fantastic mom, don't let anyone tell you any different, standing by W through all this, side by side with his wife too ... let things fall back to where they were, for the most part, he's out of the woods and I am sure he will tell you when he's not feeling up to par, enjoy your son again ... he's yours and he's there ... and tell him when he gets that new computer he better sign into here so we can all say hi and tell him what an amazing mom he has ... not that he doesn't know that already!!!

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

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1788
Loc: Jersey Shore
Re: New update on son: new
      #273869 - 09/10/13 05:57 PM

That is wonderful news Mom . Just tell your son to remember " It was the turtle that won the race" . Slow and steady can take you further than you realize.

--------------------
Look up to the Heavens for the answers to Lifes questions .

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mom2w
Newbie

Reged: 07/23/13
Posts: 13
Re: New update on son: new
      #273981 - 09/20/13 12:24 AM

Hi AIDS2HIV,

Thank you kindly for your offer.

Yesterday W had his appointment 9-17-2013, with his physician. We will know his latest blood work by the end this week or early next week.
W is doing soooo good. He said he "continues to feel better and better". He is gaining weight.

His major complaint is still many foods taste terrible.

Hi is to continue his same 8-15-2013, antibiotic regiment, for the next six weeks. One of the cultures taken early on came back positive for MAC. He received medication to cover that virus she prescribed earlier. Another test drawn yesterday to see status of the MAC.
The only change will be switching the Sustiva and Truvada to one combined tablet instead two.

Current meds: 9-17-2013:

Sustiva 600mg.
Truvada
2 tabs PM.

Mepron susp.atovaquone 2 teaspoons daily 750mg

Clarithromycin 500mg 2x daily,

Valcyte 450mg 2 x daily,

Ethambutol hcl 400mg. 2 tabs. daily (replaced Dapsone)
____________________________________________
Brief history for "W".
Presenting labs at diagnoses and medications started immediately:
July 16, 2013.

T-cell count 3.
Viral load 582,074.

Starting Meds:
Dapzone, 25mg. 2 tabs AM

Sustiva 600mg.
Truvada
2 tabs PM.
______________________________________________8-15-13:
T-cell - 94
VL - 4,030

Current Medications:

Sustiva 600mg.
Truvada
2 tabs PM.

Mepron susp.atovaquone 2 teaspoons daily 750mg

Clarithromycin 500mg 2x daily,

Valcyte 450mg 2 x daily,

Ethambutol hcl 400mg. 2 tabs. daily (replaced Dapsone)


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