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Author Topic: Death  (Read 72637 times)

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Offline Theyer

  • Member
  • Posts: 2,695
  • Current ambition. Walk the Dog .
Re: Death
« Reply #50 on: September 29, 2013, 05:43:59 AM »
Hi Mark,

I have been thinking about those who live with this and work in it as well,like you , the MODS and others.

And all I can say is I hope you get what you need to sustain yourself, in fact more than sustain also flourish ,with love and respect,
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline stratosphere

  • Member
  • Posts: 62
Re: Death
« Reply #51 on: December 06, 2013, 04:17:25 PM »
Hey all,  I haven't posted here in a very long time.  Just taking a break today between shoveling snow and saw this thread.  I've been poz now for probably 10 years (diagnosed 9 years ago) and I have to say the MEDS do work!!  I hope anyone and everyone would adhere to what their Dr.,  friends,  & loved ones would tell them regarding taking care of one's self. 

Cheers everyone
1/05   CD4 305  VL  ?        34%
2/05   CD4 310  VL  ?        35%
7/05   CD4 277  VL  <50    43%
11/05 CD4 516  VL  <50    46%
2/06   CD4 640  VL  <50    46%
6/06   CD4 578  VL  <50    46%
10/06 CD4 491  VL  <50    50%
3/07   CD4 674  VL  <50    50%
7/07   CD4 516  VL  <50    43%
11/07 CD4 635  VL  <50    44%
3/08   CD4 584  VL  <50    48%
7/08   CD4 510  VL  <50    49%
11/08 CD4 580  VL  <50    49%
2/09   CD4 661  VL  <50    50%

Offline countrymanPete

  • Member
  • Posts: 13
  • Just your average Joe
Re: Death
« Reply #52 on: February 03, 2014, 09:00:56 AM »
Hi All,
          I don't see it as a sad story, I must clarify that I don't intend that to sound hurtful, but I must also say that I understand why some choose to not take meds.   I've done it myself.   I also understand where mental illness can distract you.   We all make our choices in life on how we live , and include on how we live with HIV.  Some have the strength to fight it, and others do not. Like Cancer or any other terminal illness, people have the right to decide for themselves how they live with it, fight it, or not.  I don't know all about your friend Mark and I do empathize with your grief. sadness for the loss of a friend is always difficult.  We all consider ourselves free, and able to make decisions on what we do, taking the meds etc.   I've been trying to cope with major depression for a long time, and did for a few weeks stop taking meds.  I was fortunate to get counseling, and anti depressants. 

           I still take all my meds, but at 50 and living in Rural NSW Australia, I have my own future plan.   I am not bitter, but in the 11 years I have been HIV+/HepB+   I have had numerous other issues that mean time in Hosp, and large amounts and numerous medications.  Some of us seem to go on for ever, with few issues and  then others like myself get many other issues. I spent more of 2013 in Hosp than out of it.  In fact I cannot remember a year that has been Hosp free.  In one year I was in Hosp for 11 months( 2006).  I cannot hold down a full time job, but the state handout says I have to seek work. I cannot get a disability payment, despite having 13 specialists in different fields the state says I'm not sick enough.  I am also type 1 Diabetic, the usual Cirrhosis of the liver, severe neuropathy, in my feet and hands, to name but a few.  Some days it's a struggle to want to get up and face reality.  I've also been on antidepressants for a few years.   For me there will come a time when the quality of my life ceases, but I won't take the slow option.   This is not meant as anything more than a statement, hopefully not to pity or be sad about.  I will make my own choice.  I am a do not resuscitate,  no tube feed, etc. When it gets to the point I can't wipe my own bum, or it decides to fall out all the time like it did in 2007-2013 I'm out of here.
          Mental illness and depression can be blamed, but realistically if people for what ever reason decide that they don't want to take their meds, then realistically we have to respect their wishes.  We can only advise, but cannot force anyone to take anything. If someone is that determined there is nothing you can do but try to support them as best you can.  I think that is the hardest part.  Supporting someone who refuses to do what the majority considers normal( I hate that word, but can't find a better word, I should have stayed in school longer than i did)  We live in a free world, and not every decision that people make is the one we want them to.
          I don't want any of this to sound nasty, I am not in the least bit mean to anyone.  I am sorry if anyone is offended.   
Everything should work like a well oiled ship

The titanic was a well oiled ship.

Offline chris99

  • Member
  • Posts: 8
Re: Death
« Reply #53 on: March 24, 2014, 10:04:57 PM »
Sounds like me? I will have been positive 30 years in Jan. I have had a heart attack, and it seems like I can't go 6 months without being in the hospital with pancreatitus. 6-8 months ago. I have taking all the drugs I have to take. I have played with the virus, I didn't think I would ever have a problem with it, Never took my meds right. Now it may be winning. I live near Tampa, Fl. and the Dr I have don't seem to care if I live or die! I am looking for another one, But I have lost most of my muscles and fat. My butt is gone. I am weak, and boney. My cd4 was 100 two months ago, Now I am scared I am on the way down. I am taking my meds as close as possible to the times I am suppose to. I hope it works and stops it. I have decided this is not a virus to play with, it will win.  Any body have ideas how to try and put my muscle back?  Oh forgot to say, I stay sick at my stomach all the time. And have pretty much quit eating because usually it starts my pancrease to hurting. And getting pain meds in florida is sad.

Offline chris99

  • Member
  • Posts: 8
Re: Death
« Reply #54 on: March 24, 2014, 10:07:19 PM »
What are PWA dying from the most? Sad question, but I need/ would like to know? Plz

Offline KCSHope76

  • Member
  • Posts: 5
Re: Death
« Reply #55 on: May 28, 2014, 02:44:12 AM »

I am truly sorry for the loss you experienced. I was recently diagnosed in March this year. I am in the "one pill a day for the rest of my life hurdle". I fear that I will fail adherence.

But your post definitely changed my perspective. Us recently diagnosed have access to some of the best meds compared to 30 years ago.

Your post touched me and I am more relieved to know that I in fact have a great chance at living a long life. It's just so hard to accept the life changing news. I will always look back to your post to remind me of my chance to live whenever I start having doubts.


Offline mrtoad

  • Member
  • Posts: 49
Re: Death
« Reply #56 on: August 13, 2014, 08:27:15 AM »
he got tired of living in a world that treats him like a leper.some people live in areas worse than others.some people put up with is 20,25,30 years.you don't get that if your not 'there". it doesn't mean your a stronger person per say,they may very well have went thru alot more than you.I see other poz people treat someone very poorly all the time also.this ones on disability-target.this one doesn't have a car anymore-target.or even the 'my viral load is lower than yours" If it was only the illness we had to fight,it would be hard,but it far from the only thing unfortunately.
prezista with a kick from norvir,
Truvada, Intellence. celexa,xanax.Revolving statin

Offline Lis

  • Member
  • Posts: 603
Re: Death
« Reply #57 on: September 23, 2014, 01:57:36 AM »
Mark, I am sorry. But I must say that I have been going through the same feelings as your friend.. 26 years feels like enough.. My CD4 is 185 and I dont care.. I talked with my dad in Aztec and it sounded like a good place to let God take charge I do miss the place I was born (Farmington).. I live in an abusive home, I hate all of it and it is not condusive to for my mentat or physical health.. I wish you all the best , but Im starting to feel like Mark A..

PM me some time
poz 1986....

Offline Ds3191

  • Member
  • Posts: 8
Re: Death
« Reply #58 on: October 14, 2014, 06:14:36 PM »
Just before reading this I was about to post a form regarding my mess as I am newly diagnosed and having been on meds for the last 2 months and was about to complain about weight gain caused by it but this puts things in perspective . My only question now is will medication ultimately help to avoid this happening to me or anyone else . I know it may sound ignorant but as I am new to this all I am not sure what will happen to me after this diagnosis 

Offline drewm

  • Member
  • Posts: 1,246
Re: Death
« Reply #59 on: October 14, 2014, 08:04:21 PM »
Just before reading this I was about to post a form regarding my mess as I am newly diagnosed and having been on meds for the last 2 months and was about to complain about weight gain caused by it but this puts things in perspective . My only question now is will medication ultimately help to avoid this happening to me or anyone else . I know it may sound ignorant but as I am new to this all I am not sure what will happen to me after this diagnosis

Take your meds. Period. Take your meds.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Exruton

  • Member
  • Posts: 9
Re: Death
« Reply #60 on: November 15, 2014, 11:05:29 PM »
I'm sorry to hear that, hope he's in a better place now

Offline alberche

  • Member
  • Posts: 221
  • a distancia del mundo incierto, saludo mi suerte
Re: Death
« Reply #61 on: December 02, 2014, 07:38:44 PM »
Hi Mark, sorry about you had to pass through this again.

Such a sad story made me recall those days, some 20 years ago, when I was volunteering in an NGO, and saw many of my friends die in a similar manner, due to lack of meds, later diagnose or med failure. I wasn't HIV poz back then...

One of those friends was doing more or less well on meds (those mid-end 90's meds), but he got a sentence to go to prison for 3 years due to robbery and other minor crimes he committed when he was younger. At that time, treatment for HIV was not fully available inside prisons here, so he had to stay one year without ARVs. At a certain point, he was given bi-therapy, which evidently didn't work.

When he was out of prison he was really ill, and had developed resistance to meds. He died some months later. For his parents it was a relief. I visited them every now and then during a certain time after my friend was dead, and they never talked about him again, as if he never existed.

I felt the whole thing was truly unfair, and my friend was unfortunate, for one year after he died HAART was made available inside prisons too. If the court would have been a bit delayed dealing with his case, maybe he will be alive or at least could have lived some more years. That was the way things were back then.

Nowadays, I think maybe some of us, at a certain point, could consider suicide as a possibility if things get really bad, or if one feel so sad, so sick at heart and soul, that nothing seems to be worth to keep going on. And leaving ARVs definitely, in such circumstances, could be seen as some kind of alternative to a suicide, which is more drastic, scary, and painful. Leaving meds gets you to a gradual death which is, in the end, an idea we all have in a corner of our minds and figure out as the final part of our lives, nevermind what lifespan expectations may we have. Hence, less scary, and, in some way, already assumed since it will happen anyway. If someday I am in the circumstance of considering such a decision, I think I will explain it to myself in this way.

And all this makes me conscious about how difficult life could become at any moment. It's terrible to face death or to see others dying. Now, living in a time of treatment success, PREP and all the stuff, we usually tend to forget that many people is still dying of AIDS, today, right now. Young people simply think and feel they are too young to die, and as many of their friends, partners and colleagues are also young, for them death is only a remote possibility or an accident.

Big hugs!!!  8)

love is blindness...  a wonderful song!

Offline midnightchatter

  • Member
  • Posts: 32
Re: Death
« Reply #62 on: June 04, 2015, 06:10:23 AM »
Wow Mark,

Your post has really struck a chord with me today. I have been poz for over 12 years now and have been taking meds for just over 10 of them.

Today i was told i have severe osteoarthritis in my spine and I know over time it will only get worse BUT i have a positive outlook in life ( excuse the pun ).

No matter what gets thrown at me, whether its daily pain or the total loss of libido i have endured for years i still am grateful to be here.

Its only when you read of long term patients who saw and lived through what must have been a horrific nightmare of seeing numerous friends and family die around them. It makes me so thankful that i still can enjoy life and look past a little pain and self heartache to truly appreciate that i will live a pretty normal life.

As you say many new guys moan and complain about taking a one tablet regime. when they should be looking at the flipside of that which really would mean going back to the days of no treatment. Your friend was obviously very troubled and i hope they have found peace and rest.

Take care of yourself

MC xx

Offline michaelzalnasky

  • Member
  • Posts: 31
  • speaking Out & Raising Awareness
Re: Death
« Reply #63 on: July 02, 2015, 03:31:50 PM »
Check with your physican
A few months back my doctor had me approved for Growth Hormones called serostim
They are to help me increase weight and body mass
I'll just say this they are working
I've gone from 123 pounds to now 146
But more importantly is the muscle and strength I'm gaining
I highly recommend
However they are very costly lucky my insurance covered it
I tested positive 10 months ago my most recent labs
I was 146 pounds
C-4 64
VL- 39
Now I know my c-4 is still very low but six weeks ago it was 32 so it is increasing and I'm feeling much healthier
I must say I'm dedicated to my Meds
And take the faithfully
But my biggest asset has been my attitude & outlook !!!
Amen Brother Stay Strong
Zee 🙏🏻

Offline gcr.mty.mx

  • Member
  • Posts: 73
Re: Death
« Reply #64 on: May 23, 2016, 12:34:03 AM »
Two weeks after knowing I was positive I had a conversation with someone who is now a good friend, is also positive and had lost his partner to AIDS a couple years back. This conversation has been the one that stuck to me the most by far.

He said that he has seen what AIDS will do to you and that he as I should be is so grateful that there are these magical pills that will keep you away from that with so insignificant side effects compared to AIDS.

Be grateful he said, each time you take your meds you have to be grateful ...and I am, everyday.

I have tried to remain in a positive and hopeful mindset towards significant and insignificant, small and big things. It has made it possible for me to be at peace. It's a challenge but totally doable!

Stay strong everyone! And let's pray for those who are not as lucky.
01/16 diagnosed
03/16 cd4 750 VL 150,000
03/16 truvada+ritonavir(norvir)+reyataz
06/16 cd4 -- VL UD!
09/16 truvada+ritonavir(norvir)+duranavir(prezista)
03/17 cd4 -- VL UD

Offline ack55

  • Member
  • Posts: 9
Re: Death
« Reply #65 on: June 30, 2017, 02:29:38 AM »
This is very powerful to read and I thank you for sharing something that is painful and personal. It really does open up your eyes to the reality that taking one pill a day and having to constantly work through the emotional issues isn't so bad when you put it in to perspective. We are very blessed to be given the opportunity to live. Millions have died and millions will continue to die and it is an absolute tragedy. I wasn't feeling too awesome today but reading this story was a reminder of how precious life is and how much we should appreciate being given the opportunity to take medications and live a healthy life. I am very sorry for your loss and I am sure that your kindness and compassion was greatly appreciated by your friend.

Offline LiveWithIt

  • Member
  • Posts: 510
Re: Death
« Reply #66 on: September 26, 2017, 11:31:09 AM »
Very sad situation, may be rest in peace.  Sorry for your loss.
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline den2542

  • Member
  • Posts: 47
  • Life is what you make it, so make it good
Re: Death
« Reply #67 on: November 19, 2017, 03:59:20 PM »
To all. You know we all are not much different than each other. I just started reading the forums seveal days ago. I was feeling sad, depressed, heavily burdoned, scared, unloved, alone, thinking why me. Why here I am sitting on my sofa in my home typing to you all that I've never met and whom I can empathize with. I've read posts of sadness, heartbreak, anguish, love, posts of fear, no matter what they were important to each of you and to those affected. Even the moderators have so much love. Until now I never reached out for support because I thought no one could *feel* the way I do, I thought I was unique in my thinking, i thought no one cared, I thought I had to face my fears alone, but I realized that no matter the circumstances, the distance, of how we got here, we are here and I have never in my life seen such love come from such awesome people. Bless you all. Your posts made me feel much better. Diagnosed in 93, CD 4 46 in 2002, Combivir / Sustiva in 2002, Atripla 2011, now starting Genvoya next week. UD CD 4 470. No OIs other than thrush. So I thank you do much for your posts and support.


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