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Author Topic: Questions - Son recently diagnosed  (Read 6471 times)

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Offline squaw

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  • Posts: 39
Questions - Son recently diagnosed
« on: June 14, 2010, 04:49:31 PM »
My son just told me three days ago that he is HIV positive.  He thinks he was infected in 2007 when he suffered a bout of swollen lymph nodes.  He was tested then, but was negative.  He wasn't tested again unil January 2010 and this time it was positive.  He has been getting regular CD4 and VL counts done since January.  CD4 started out in mid 300's, but progressively started coming down to 280 with most recent test.  His VL is 54,000 and percentage is 24%.  He decided to start Atripla one week ago.  My question is, my son is very underweight.  Always has been, even before HIV.  Could this be the reason for the rapid progression?  Will is weight make him less able to fight the illness, or does he have the same chance at a long healthy life as everyone else who is on medication.  My heart goes out to each and every person on this website who is either suffering from HIV/AIDS or loving someone who is.  It is a horrible disease.

Offline Boze

  • Member
  • Posts: 477
Re: Questions - Son recently diagnosed
« Reply #1 on: June 14, 2010, 05:03:24 PM »
Sorry to hear about your son's predicament.

My understanding of the drugs involved is that they alone take care of stopping the virus from reproducing. Therefore I think he has the same chance as anybody else with his stats to overcome the disease - main issue is simply drug adherence - taking the pill every single day without interruption. If he makes sure to do that, his weight should not be a major issue.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Re: Questions - Son recently diagnosed
« Reply #2 on: June 14, 2010, 05:30:48 PM »
Hello!

If these are fairly recent lab #s (and not less than 3 sets of #s), a drop from 350 CD4 to 280 might give you pause (and certainly justifies starting meds) BUT, I don't know that this is anything like "rapid progression", especially since a 54K VL is not a big deal. With his ARVs, your Son should experience a rapid decline in VL and a significant growth in CD4s. These are not earth-shaking #s as a starting point.

People who do progress to AIDS (less than 200 CD4) also benefit significantly from current HIV treatments. Many are right here on this site, and doing much better, or even very well, years later. Your Son does not have an AIDS diagnosis.

You say we have a "horrible disease". What experience do you have with HIV+ individuals to say this? I know people with far worse illnesses than HIV. After 19 years POZ, I view my own HIV as a serious illness---far from a "horrible" illness. Empathy is cool. Pity? No thanks!

Your Son may still be adjusting to his diagnosis. WIth 3 days knowledge, the same can certainly be said for you. Take it one step at a time. He waited to tell you, and that might have been a wise course. I hope you have taken time to read the excellent "Lessons" portion of this site. Education may eradicate some of your fears.

You say your Son is "very underweight". How tall and how much does he weigh? I see no reason that a skinny person would have a worse time than an obese person dealing with HIV. He doesn't need excess fat (binge on calories and sugars), but might benefit from some muscle building---keep in mind ectomorphs ("skinnys") grow the least muscle from resistance training. Good nutrition (including sufficient protein) plus refraining from smoking or excess drinking, would serve him well. Does he enjoy food?

We would welcome your Son on this site. He can certainly read what is here, before deciding whether to join.

-Steven (aka   8)  megasept)
« Last Edit: June 14, 2010, 05:42:41 PM by megasept »

Offline squaw

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  • Posts: 39
Re: Questions - Son recently diagnosed
« Reply #3 on: June 14, 2010, 07:49:39 PM »
I wasn't trying to be judgmental when I said that HIV/AIDS is a horrible disease, and I certainly wasn't trying to "pity" anybody.  I was expressing concern, excuse me for being human.  I have zero experience with the disease other than my son being diagnosed with it.  If you are one of those who is doing well, then I assume you don't consider it a horrible disease, but if you were one of those that is wasting away and dying from it, I think you would feel quite differently.  My son is about 5'9" and weighs about 112 pounds.  I don't think he has ever weighed over 118.  He does eat well, just natually skinny.  So was I until I turned 40.  My son is only 28.

My son kept his diagnosis from me until he could come to terms with it and educate himself.  I have read tons of things about HIV/AIDS are a lot of it is conflicting information.  I assume this disease is like every other disease, it affects different people differently.

I must say I am shocked at the anger I got for expressing my concern.  I thought this was a place where people could go for support.  I guess I was wrong.

Offline Matty the Damned

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  • Ninja Please
Re: Questions - Son recently diagnosed
« Reply #4 on: June 14, 2010, 07:55:54 PM »
I wasn't trying to be judgmental when I said that HIV/AIDS is a horrible disease, and I certainly wasn't trying to "pity" anybody.  I was expressing concern, excuse me for being human.  I have zero experience with the disease other than my son being diagnosed with it.  If you are one of those who is doing well, then I assume you don't consider it a horrible disease, but if you were one of those that is wasting away and dying from it, I think you would feel quite differently.  My son is about 5'9" and weighs about 112 pounds.  I don't think he has ever weighed over 118.  He does eat well, just natually skinny.  So was I until I turned 40.  My son is only 28.

My son kept his diagnosis from me until he could come to terms with it and educate himself.  I have read tons of things about HIV/AIDS are a lot of it is conflicting information.  I assume this disease is like every other disease, it affects different people differently.

I must say I am shocked at the anger I got for expressing my concern.  I thought this was a place where people could go for support.  I guess I was wrong.


Hey Squaw,

I'm sorry to hear about your son.

I have HIV and I agree with you, it is a horrible disease. :)

MtD

Offline HippieLady

  • Member
  • Posts: 219
Re: Questions - Son recently diagnosed
« Reply #5 on: June 14, 2010, 10:19:24 PM »
Hi Squaw...

I was diagnosed this year as well and only recently told my mom.  It was probably the hardest thing I ever had to do, I can understand why your son waited.  So far, for me, HIV is a horrible disease.  But I'm still new at this and still learning how this will incorporate into my life.

I think it's wonderful that you support him and are concerned about his health.  Kudos to you! :)
~Katie~
Diagnosed HIV+ April 30, 2010

Current CD4-638  VL-UD  11/2013

Offline phildinftlaudy

  • Member
  • Posts: 2,965
  • sweet Ann what you think babe...
Re: Questions - Son recently diagnosed
« Reply #6 on: June 14, 2010, 10:20:00 PM »
Hello Squaw-
I think it is admirable that you found these forums and posted a question about your concerns regarding your son.

I agree this is a horrible disease -- thankfully there are treatments today that make it less horrible in regards to progression.

I want to apologize on behalf of the members of these forums who do care and who read and saw the concern in your post and your seeking of honest answers.

I can only hope that megasept will apologize for his/her remarks -which were completely inappropriate, insensitive and inexcusable.

I hope you feel comfortable enough to come back and to post your questions and give updates on your son and to let him know about the forums as a resource for support ---- as with anything on the internet, you have to be able to discard the useless information or insensitivity of some and recognize the concern and empathy of others.

September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline WillyWump

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  • Posts: 7,198
  • Fall is in the air!
Re: Questions - Son recently diagnosed
« Reply #7 on: June 14, 2010, 10:47:25 PM »
Hello Squaw,

It's great to see a parent being such a strong support mechanism for their son.

 Regarding the underweight question, I have always been skinny, before I was diagnosed I averaged 135pounds (@ 5'11"). In the year that I have been on meds I have gained 10-15 pounds. I dont have any scientific reason for why the weight gain happened, other than I seem to be hungry all the time. But my point I guess is that even those of us who are skinny do quite well on meds, and some like me start gaining weight. While I may not have been as "underweight" as your son, me being skinny did not affect my bodies ablility to fight the disease.

Your son's numbers are not that bad, yes his CD4's are a tad low, but his VL is really quite manageable. It's a good thing he caught this before this started getting worse than they already are. By starting treatment now he should be able to preserve his immune system and bounce back quite well. BTW, Atripla is an absolutely amazing drug, just take a look through the forum at all the great results people have attained very quickly with Atripla.

My numbers were somewhat similar to your sons at one point, take a look at my profile to see a history of my numbers and youll see how well we are able to bounce back with HAART.

We would love to see your son in here at some point, these forums are a great tool in our arsenal, there is much to learn here, and some great people to boot :)

WElcome, and Im sorry your son has to deal with this. Feel free to ask anything of us here.

and yes, I agree with you, this is a horrible disease.

All the best to you and your son,

-Will
« Last Edit: June 15, 2010, 09:21:57 AM by WillyWump »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline squaw

  • Member
  • Posts: 39
Re: Questions - Son recently diagnosed
« Reply #8 on: June 15, 2010, 10:37:09 AM »
Awww, thank all of you for the kind messages.  I told my son I was on this website, and I will encourage him to join.  He is in a very unforgiving, non-supportive place right now (northern Louisiana).  He is planning to transfer to Tampa, where I feel he will be more at home and more in the company of people like him (he is gay).

I have supported my son since he told me at age 17 that he was gay.  I have NEVER been ashamed of him, and this diagnosis doesn't change a thing.  If anything, it makes we want to be even closer to him to help him cope with whatever comes his way.  I had a brief second of anger when I found out about the diagnosis, because this disease is preventable.  But then I realized that nearly everyone, including myself, has had unsafe sex at one time or another in their lives.

Thanks again for talking to me, and I will keep you all posted on my son's status.  He goes back to the doctor on July 6, and that will be one month after starting ART.  We are hoping to see a rise in CD4 and a drop in VL. 

Offline mecch

  • Member
  • Posts: 11,925
  • red pill? or blue pill?
Re: Questions - Son recently diagnosed
« Reply #9 on: June 15, 2010, 12:17:58 PM »
Hi Squaw, welcome to the forums
Its very kind that you join to support him and contribute here as well.

As for your thin son - as far as I have seen and learned and experienced about HIV - body type doesn't have anything to do with progression of HIV - its mostly just genetic.  Add to that some lifestyle. Also body type doesn't seem to have anything to do with the success of HAART.  HAART reliably does its job these days.  You just gotta be faithful taking it!

Dont fix too much on the numbers, either. Your son was never in danger of immune deficient diseases and also now that he is on HAART, his immunity will slowly rebuild.  
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline ElZorro

  • Member
  • Posts: 535
Re: Questions - Son recently diagnosed
« Reply #10 on: June 15, 2010, 08:03:11 PM »
I'm sorry that your son has to go through this (I have a 23 year old son myself).

I wasn't trying to be judgmental when I said that HIV/AIDS is a horrible disease, and I certainly wasn't trying to "pity" anybody....I must say I am shocked at the anger I got for expressing my concern.  I thought this was a place where people could go for support.  I guess I was wrong.

No, you weren't wrong - this is a great place to come for support and I hope you encourage your son to come here as well.

I'm new to this disease as well and it is horrible, but not in a "I'm gonna die a painful, miserable death in 6 months" way. Today, it is very manageable, and, in all likelihood, your son will do fine physically with his meds (see my numbers as an example). The challenge for me up to this point has been both mental and emotional. There is very much a stigma associated with having HIV; a feeling that you are somehow tainted or damaged goods and it's very easy for one to feel down or sorry for themself. I would recommend continuing to educate yourself and to "be there" for your son. He will need your love, support, and encouragement; especially if he starts to feel blue or hopeless, alone, or isolated. If he is able, I would also recommend that he try to find a live support group. When I'm able, I attend one through the VA for those with chronic and terminal illnesses and (not to sound crass), it's very difficult for me to feel sorry for myself after meeting with people in far worse circumstances (e.g. terminal cancer and other very hopeless diseases).

There is a tremendous amount of encouraging research going on and advances are constantly being made. One of the highlights of my week is to come out to this site and to read the new postings in the "Research News" section and to catch up on what is going on and get the "pep talk" I need to remember that "this too shall pass". When I'm having a really bad day, I call my mother (a nurse) and she reminds me that she, too, is convinced that there will be a cure for HIV.

Best wishes to both of you

Z

(already in Tampa  ;D)
« Last Edit: June 15, 2010, 08:13:44 PM by ElZorro »

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Questions - Son recently diagnosed
« Reply #11 on: June 18, 2010, 12:13:22 PM »
Hi and welcome most people put weight on after starting meds as without them your body is fighting the hiv 24/ 7 so i think you will see him gain some wieght i gained 10 kilos thats 22 lb
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Realist

  • Member
  • Posts: 162
    • NotDownNotOut's Blog
Re: Questions - Son recently diagnosed
« Reply #12 on: June 24, 2010, 05:25:27 PM »
Welcome Squaw.

I was having a rant in one of the other threads earlier - complaining about this "horrible disease".

One thing is for sure, none of us wanted it but it affects us all - even now you.

Your post snapped me out of a self analysis going nowhere. I was touched (as hard faced as I normally am) by a mother seeking the best for her son and his protection. This is something I do not have in relation to my status, yet.

Your son is the same age as me (28), we have similar numbers and appear to have seroconverted around the same time. I have not told my family about my status yet, and I'm not sure I can. But I'm generally healthy, have recently started meds and have not turned into an ogre! :D We cope because that's what life teaches us to do.

So for just being here I thank you. I thank you for seeking out information and this site, I thank you for starting to educate yourself and most of all for loving your son plainly and simply as his mother. He can be strong with us but he is strongest with you by his side, united.
23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

Offline Mother Teresa

  • Member
  • Posts: 5
Re: Questions - Son recently diagnosed
« Reply #13 on: July 07, 2010, 11:01:00 AM »
Quote
Your son is the same age as me (28), we have similar numbers and appear to have seroconverted around the same time. I have not told my family about my status yet, and I'm not sure I can. But I'm generally healthy, have recently started meds and have not turned into an ogre!  We cope because that's what life teaches us to do.

I am so sorry you do not have the self-assurance to be able to tell your family about your status or that you will not have their support.  Just like Squaw my daughter just told me that she was tested positive and I can't imagine not being there to help her anyway I can. 

I too think it is a "horrible disease" but one that can be managed.  Considering I lost my grandson in January 2009 from complications to AML (acute myeloid leukemia) at age 4 years anything that affects the immune system or has high risk factors are horrible diseases.  Of course in the 1970's if you were diagnosed with leukemia it was an automatic death sentence, when HIV was discovered the same issues prevailed.  Now medical technology is better and new treatments are prevalent and more are discovered all the time. 

I was devastated when my daughter told me her news and then I started reading all I could get my hands on and with talking to her I realize she can be around long after I have departed this Earth.  My granddaughters and my grandson will still have their mom for a long time to come.

Teresa :)

Offline Ravhyn

  • Member
  • Posts: 260
  • Nerd Alert
Re: Questions - Son recently diagnosed
« Reply #14 on: July 07, 2010, 11:20:52 AM »
I am so happy too see wonderful mothers who are so very supportive, seriously..I'm tearing up (But I'm so overly emotional lately it's not even funny)

Squaw having such a supportive mother is really going to help him a lot in the long run.  I stick by guns that love and happiness help a long way in fighting this virus.  My mom knows I have the virus, in fact my whole family does and there very supportive it's done wonders for me, and I think it's honestly helped just as much as the meds (even though I myself am newly diagnosed but sero-converted in 2006)

you and your son will find a great support system here =)
April 2006 - Sero-Conversion
December 2009 - Diagnosed
Jan 2010- VL 3,800 CD4 152
Summer 2010 VL UD, CD4 over 200
September 2010 VL UD, CD4 324
March 2011 VL UD, CD4 477
May 2011 VL UD, 338

Offline Realist

  • Member
  • Posts: 162
    • NotDownNotOut's Blog
Re: Questions - Son recently diagnosed
« Reply #15 on: July 08, 2010, 08:11:36 AM »
I am so sorry you do not have the self-assurance to be able to tell your family about your status or that you will not have their support. 

I'm not sure that I've been understood. I didn't say that I wouldn't have their support, I said I'm not sure if I can tell them - yet. Disclosure for me is very personal. I am very close to my family and simply do not feel it necessary to change the dynamic at this stage. I'm sure the day will come when I do tell then and I will enveloped with support particularly from my mother, but for now (as a very indepedent person) I just don't want to - I see no need. I take more comfort from everything being as it was before I received the dreaded bombshell, it helps my that my entire life hasn't been thrown into turmoil and in particular the relationships that I have with those closest to me.

I was devastated when my daughter told me her news and then I started reading all I could get my hands on

This is precisely the dynamic I have chosen to avoid. It works very well for some and for me, its a choice  not to do that.

What I would say is that for those mothers, like yourself, who are members of this forum, I think that's fantastic but there's no need to be sad for me. I know its there for the day I need it.
23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

Offline squaw

  • Member
  • Posts: 39
Re: Questions - Son recently diagnosed
« Reply #16 on: July 09, 2010, 06:29:04 PM »
Realist,

I totally understand where you are coming from in not wanting to drop this bomb on your family.  My son knew for nearly 6 months before he told me, and I'm thankful that he waited.  He needed that time to come to terms with it himself, and time to learn all that he could about it before he had to educate me.  Because he is in LA and I am TN, he told me on the phone.  I immediately started balling.  I was completely ignorant about HIV in the year 2010.  The HIV I remembered was the 1980's HIV.  SO MUCH HAS CHANGED. 

Maybe you wonder if I wish he hadn't told me.  No, I don't.  As painful as it is for me, I want to be there to help my son.  We are very close and I wouldn't want this disease to be something that he had to hide from me.  He is gay and told me about that at age 17 (although I have to admit I suspected since he was about 10).  Point is, I love and accept my son - NO MATTER WHAT.  Has the knowledge about my son's HIV status changed our relationship - DEFINITELY - and FOR THE BETTER.  We are in contact more now than before and when he has medication issues or questions he says "mom, go on your website and ask this or that."    I am so very thankful for this website and for the wonderful people who so patiently answer the questions of a worried mother.

I wish you the best healthwise and familywise.  It sounds like you have a supportive family and I am sure when  you feel the time is right you will tell them and I hope they will give you the support you need.

Take care,

Squaw


Offline Realist

  • Member
  • Posts: 162
    • NotDownNotOut's Blog
Re: Questions - Son recently diagnosed
« Reply #17 on: July 10, 2010, 01:11:14 PM »
Thanks Squaw, its good to know people sort of understand! I also understand your feelings in wanting to know whats happening, no matter how hard or difficult and I do understand that for a parent when I choose to break the news that it will be a touch more saddening that I didn't share it earlier - but I'm willing to do that simply to have the calm and "normality" in my relationships and to simply not need to worry or upset anyone.

And BTW, now you have a profile pic - are you sure your son is 28!!!!! Lets hope he's inherited his mothers genes and under eye bags will be the last thing he has to worry about!
23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

Offline Billy B

  • Member
  • Posts: 374
Re: Questions - Son recently diagnosed
« Reply #18 on: July 10, 2010, 03:07:26 PM »
Hello Ms. Squaw - When the time came for me to tell my mother that I had   something very important to discuss with her she burst into tears. She knew that I was gay before I did and I told her that I had been + for well over 15 years now and had decided to start meds. She was a little upset that I had kept this from her all those years but she was crying tears of joy because I did not have Malignant Melanoma. It killed both my brother & sister and she feared that I had it also. While HIV can be a horrible disease my mom was relieved that this was the problem since I stand a good chance of living many more years.
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline squaw

  • Member
  • Posts: 39
Re: Questions - Son recently diagnosed
« Reply #19 on: July 10, 2010, 04:54:22 PM »
Awww Realist, you are too kind.  Thank you.  My son is a hottie if I do say so myself.  People used to tell him alot that he looked like Ricky Martin.  We are leaving next week for a family vacation at the lake and I will get to see my son for a whole week!  I'm soooo excited.

Billy, make sure you stay out of the sun!  I guess you already know this, but being HIV+ makes you more susceptible to cancer, and with your family history of it, you need to be extra careful.  Sorry for mothering y'all, that's just my way.  LOL

Take care,
Squaw

Offline ga1964

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  • Posts: 188
Re: Questions - Son recently diagnosed
« Reply #20 on: August 14, 2010, 06:28:47 PM »
Hi spuaw,

God bless you for taking a proactive approach to your son's diagnosis.  He is blessed to have a wonderful caring mother.  I told my parents when I was diagnosed and they took the news as well as can be expected and have been very supportive for me since.  I don't know how open your line of communication with your son is, but for me, I don't talk much about my HIV to my parents unless they ask.  Its just the way I am.   I have always been more reserved when discussing subjects like my HIV with anyone for that matter. 

I do appreciate when they ask, but also feel uncomfortable at the same time.  I know they care and want to stay abreast about my condition, it's just not easy for me to start the conversation.  I feel like "Debbie Downer" when discussing my HIV. 

The main reason why I responded to your post is to let you know how good Atripla is.  When I was diagnosed my CD-4 was 191 and my VL was around 50,000.  Since being on Atripla my CD-4 count is near 600 and my VL is undetectable.  My ID. told me he wished all of his patients responded as well as I did.  The one thing I would keep a close check on is depression.  Atripla can cause depression, as it did with me, and I am taking anti-depressants to counter balance the effects.  The first anti-depressant they put me on did not work and I was recently changed to a new one which is working much better.  I still have days of depression, but not as long of bouts with it like I used to. 

I hope your son improves numbers improve and he gets better.  Having a loving, caring mother will help him more than you will ever know.

God bless and take care.   

Offline Scotty87

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  • Posts: 18
Re: Questions - Son recently diagnosed
« Reply #21 on: August 23, 2010, 06:42:05 PM »
I haven't found weight to be a big factor in my health as pertaining to my aids status.  I have always been thin...  I'm 23, i'm at least 6'4" and I only weight about 129 pounds.  I have been at that same weight since I was diagnosed in January.  My cd4 count was 99, 6.2% and vl 180. Statrted on meds and now my cd4 count is 505, 37.3% and vl is undetecatble.  Weight definitely didn't affect my numbers getting into a much better place than where they had been six months ago.  Obviously everyone would like me to put on weight - myself included, but even before becoming positive I was thin and didn't put on weight.  My doctor monitors it and as long as it's not decreasing any more she is okay with it.  She tested my thyroid just to be sure this last time, but it tested fine.  I take daily vitamins and make sure that I get the right nutrition, my numbers come back just fine for me.  My mother is very supportive of me and it makes me really happy to see that there are other mom's out there supporting their sons no matter what.  Feel free to message me if you ever have any questions that i may be able to help with!

Offline debsd222

  • Member
  • Posts: 69
Re: Questions - Son recently diagnosed
« Reply #22 on: August 24, 2010, 11:46:23 PM »
Wow Scotty thats an amazing improvement in your numbers so quickly! Congrats!
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: Questions - Son recently diagnosed
« Reply #23 on: August 25, 2010, 12:46:16 AM »
I remember when I tested positive in April of 1993. I went into "shock crisis" mode, where I basically shut down emotionally and took care of stuff, because I knew I was going to melt down and wanted things to be prepared. I got a doctor, registered with the local ASO, and told my friends and family.

I remember sitting with my folks in the lobby of a Howard Johnson's, drinking awful (but complimentary) coffee and telling them the news while we sat, awkwardly, in those rounded fabric-y chairs that make being comfortable impossible.

It was, in retrospect, a little lacking on the tact side. But I was all about mobilizing the forces, and all that. Plus, I was also 27 and a little self-centered. Ok, a lot.

I remember my parent's faces crumple when they heard the news. and how awful I felt for having brought that weight into their lives as well as my own. They were immediately and  enthusiastically supportive, however.

But one night, about a year before my father passed away (2001) I recall sitting at the kitchen table, having come home for the holidays. I remember, out of absolutely nowhere, my father (a stoic man of the "Mad Men" generation) beginning to cry. Well, we were playing cards, and this seemed to be an odd way to lose "Go Fish." So mom and I, we just sat there, silent, stunned, waiting for him to talk.

He finally said that he felt guilty, so very guilty for having initially rejected me for being gay. I had come out to my folks at the age of 14, and the next eighteen or so months had not been exactly our family's finest hours. But over a decade had passed, and we had gone on, and I had thought that issue long resolved.

But, as Dad clarified, he saw it as his fault that I had seroconverted. He said that if he had accepted me, been there for me when I needed him the most, I might not have taken the risks with my life later on, looking for that validation, that acceptance. Clearly, Dad watched a lot of daytime television after he retired.

But you know something? He did have a point. Maybe.

Thing is, and I tried to tell him, I was over a decade PAST that time in my life, a totally different person. I was grown up now, and capable of making my own choices, good and bad. It was important for me to OWN this choice, this lapse in judgment. I didn't want to share it, regardless of the stuff you read in books. I NEEDED it to be mine. Because otherwise, how would I be able to fight it in the darkest hours, when we are all alone?

Maybe Dad was so sad because he could not take the burden from me. Maybe he was feeling his mortality, and despaired over leaving us, his "innocents," to fend for ourselves in a clearly messed-up world. We all have issues.

I just wanted to say thanks for validating my own choice, so long ago. Having parents who loved and accepted me was a foundation for good choices I made later on. I just hope you never feel what my father clearly felt, and that if you do, that you do not let it fester.

We are all, for the most part, doing the very best we can on any given day. we have issues, many crippling. We have events that overwhelm us. We have deep-seated anger and guilt and sadness that, sometimes, rise up like the tide and threaten to drown us.

We survive, I think, because we love. And because we are loved by others. Ferociously, relentlessly, and unconditionally. Your love for your son is as powerful as HAART therapy. I thank whatever God or Goddess or Universal Force you believe in, that you exist.

« Last Edit: August 25, 2010, 12:48:12 AM by jkinatl2 »
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline squaw

  • Member
  • Posts: 39
Re: Questions - Son recently diagnosed
« Reply #24 on: August 25, 2010, 09:09:15 PM »
JK,

Thank you for sharing your story.  I'm sorry your father had to live with feeling like he wasn't supportive of you.  I am so thankful that he was allowed to "make peace" with those feelings before he passed.  It gave him the opportunity to release the burden he had been carrying around, and gave you the opportunity to let him know that you didn't harbor any hard feelings about the past.

I also admire how you take ownership of your HIV status, but I hope you don't beat yourself up about it.  All of us make bad decisions.  Some of those bad decisions have short term effects, and some have lifelong effects.  Unfortunately HIV is one of the lifelong ones.  You didn't say how you are doing medically, but it appears that you are doing okay. 

Take care and I wish you the best of health and happiness.

Squaw



Offline LoboDog

  • Member
  • Posts: 78
Re: Questions - Son recently diagnosed
« Reply #25 on: October 03, 2010, 09:32:45 AM »
Hi Squaw,

In regards to the pity comments from above, there is a personal stigma attached with HIV. This isn't cancer or diabetes, most of us who got it acquired it by doing something that we knew wasn't a good idea to do. This leads to a bit of self blame. It's difficult to know that someone pitties you if you blame yourself.

By nature, any disease is horrible. That why we call them diseases... For those being treated, HIV has become manageable and livable. It has become a disease of worry more so than a disease of limitation / illness. I worry about my numbers, I worry about getting sick. I worry about passing it on. I worry about healthcare and losing it.

In regards to your son, if he is skinny, he is skinny. He probably won't be able to put on weight if he tried. First rule in life, if you can't change it, then don't worry about it. Help him with the things that will make a difference: diet, excercise, leading a balanced and productive life. These are things that effect the immune system the most and are the aspects of life that we have control over.

The best that you can do for him is to listen and be understanding. As I mentioned above, there is a personal stigma to this disease that we all have to deal with. He may go through a period where he seems out of sorts as he deals with this.

Another thing that you can do... And I know this is the hardest for a momma to do... Is to not worry. Your worrying may add stress to his life, and stress is not good for the immune system. Continue with what you are doing now. Get educated, learn about the disease, listen to him, be supportive.

Hugs.

 


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