Of Meds and Mortality

[aztecan]

I had to meet with someone today who was just given the news he needs to start meds. His is an unusual case for several medical reasons I can't go into at the moment.

I have acted as comforter on several occasions when someone has been given bad news or news they didn't expect.  Today, the reaction from this young man was pretty much what I expected.

But, after leaving him I had to drive to another city 200 miles away. It was an uneventful drive and I made it here by 9 p.m., but it afforded me some nice thinking time.

It occurred to me how fundamentally different my attitude and reaction was when I was given the news I should start meds and that of this young man I met with today.

No, I didn't jump for joy. But, the choices seemed clear to me: Start when I did or wait until I was at death's door and then try to regain the health I had lost.

You all know the story by this time, so I won't belabor it.

But this young man today became fixated on his own mortality rather than on putting up a fight to stave off that eventuality.

Perhaps he never really gave the subject of his own mortality any thought in the past. Maybe, this was a wake-up call. Or, maybe, there is a fundamental difference in how we view the meds and our life with HIV.

I see this repeatedly here on the forums, people terrified at starting meds, willing to face emaciated immune systems tarther that then possible spectre of med side effects.

The "what ifs" seem to outweigh the realities of the horrors of opportunistic infections.

The first thing this young man asked me was whether he should make out his will right away. Then he was concerned about advanced directives. Granted, these are important concerns, but this guy didn't give them a second thought until he got that call this afternoon.

Suddenly, life and death are all too real for this young man.

I just never saw the meds that way. They were not the harbinger of death, the beginning of the end, a precursor of ill tidings.

For me, they were a way to fight back, to stave off the inevitable. I know one day I will die, but with the meds, I was not going to go gently into that good night.

I have lived longer than I thought I would - or could. I have had my ups and downs. But I'm not through yet.

Maybe that is the difference between me and this young man. He sees himself as washed up, finished. I see myself as trying my best to enjoy each chapter of life as it unfolds, replacing the chapter that came before it.

That may make me foolish or crazy. Maybe that's not all bad.

HUGS,

Mark

[DanielMark]

I just never saw the meds that way. They were not the harbinger of death, the beginning of the end, a precursor of ill tidings.

For me, they were a way to fight back, to stave off the inevitable.

Well said Mark, and I see taking meds the same way. I believe the naked awareness that our lives are finite comes to people at different times. This seems to have been the time for your friend.

Daniel

[aztecan]

Hey Daniel,

Yes, even though this young man has been positive for five or six years, he always seemed to ignore it most of the time.

But, he will adjust, I think. I just was musing on the basic differences in the way we perceived our lives and the meds.

HUGS,

Mark

[komnaes]

So this guy was able to not talking meds for a few years until now but knew all along that he's positive? Then only now that he starts to think about making a will, etc?

It's been 3 months almost since my diagnosis and I made ALL my will, advance medical directives and POAs all within the first 2 weeks of it. I don't link starting meds with those "morbid" things; I just felt at the time that I should put everything in order. Death did, still does, seem much closer at the time, but in my case anyway it was more about not wanting to burden anyone if I might drop dead suddenly with an OI or, er, suicide (yes, it did cross my mind).

As a sort of newbie I am glad that there are more advanced meds and options but there's still constant fear that they won't work on you, the worse side effects will show up in my case and I have this freak-of-nature of a virus that nothing can be done about it. But I suppose, just like I thought it was the beginning of an end when I received my positive result, I am learning to adjust to new situations. So, in the future, when meds are inevitable, I will (hopefully) accept my reactions to them stage by stage.

Your friend may just be going through that stage now Mark...

Just my 2 cents, hugs, Shaun

[Dachshund]

I remember my first visit to an Infectious Disease doctor post infection. Basic chit chat about my options (AZT) and a discussion about treatment options that he assured me were on the horizon. As I was leaving he put his hand on my shoulder and said, "emotionally this is going to fuck with your head." Though the advances in treatment is nothing short of amazing, I still think what my doc said to me back in the early nineties holds true today.

[redhotmuslbear]

Maybe that is the difference between me and this young man. He sees himself as washed up, finished. I see myself as trying my best to enjoy each chapter of life as it unfolds, replacing the chapter that came before it.

Mark,
While it can be easy to contrast our own reactions to situations with the reactions of others in similar straits, I believe that the difference here, based on a number of similar encounters, is largely attributeable to social-sexual attitudes towards HIVers, not necessarily the individual.  When you started the journey with meds, Queermen lived in collective fear of this virus stalking us, and we did our best to protect ourselves while not fearing to love or share physical intimacy -- our brothers with HIv were laregly not cast out, but supported and embraced.  Yet, even though treatments have improved and knowledge about protection has increased, Queer hearts have been hardened against those of us with the virus--"DDF, UB2"--and newcomers to the infected life feel instantly cut off from their Queer brothers, with being cornered into taking meds making the separation ever more clear.

Namaste,
David

[aztecan]

Hey David,

You bring up an interesting point I hadn't considered. That is definite food for thought.

Hmmm.

Mark

[AlanBama]

Like you, Mark, I am often puzzled by the reaction of newly infected people to the idea of taking meds.   As we've discussed before, in "our day" we would have gargled with Drano if anyone had told us that might help.

I see the drugs as lifesavers, things that gave me back (and continue to give) life.

Also, as we've discussed before, I think to anyone who has ever faced the reality of a life-threatening O.I., the drugs don't seem nearly as evil.

Sure, it's a big adjustment to make in your life, having to take pills every day without fail.   I still think it is a small price to pay for the benefit we receive.
But I've been "on the brink" several times in the 90's, and I realize people that are newly infected may not realize the severity of PCP, MAC, KS, etc...

Believe me, they are things you truly want to learn about by reading, not by experiencing them !

Hugs,

Alan

[strykern]

I have to admit that I was one of those that had issues with the thought of starting meds.
I made it 12 years poz without the need for them and when that time came, I felt like I had lost the battle.

This group has helped me start to change my thinking but I still stress about my future including serious medication every day.  But, I am learning I can adjust to anything and with the remarkable people in this forum as examples, the future is looking brighter.  Shoot,  I am actually feeling better since I started my meds 40 days ago.

One other admission... this sites title threw me a bit at first.   I SO wish it was HIVmeds.com instead of AIDSMeds.com.  I have HIV and take HIV medication.  AID's still scares the hell out of me.  But... I am glad I found it and the name of the site is not that big of a deal anymore.

My two cents!   Happy Holidaze everyone and thanks for everything!

[a2z]

Going through the beginning of this thought process, I totally get it.

I'm hoping, but not expecting, my numbers to come back well over 350 -- so I can avoid the damned meds and all the side effects that go with them.

Taking the meds is an admission that you have this bug, and it may kill you.  Otherwise, why would you take medications with possibly toxic effects?  It makes it all very real.  Up until then it's a bunch of symptoms that aren't death, and a damned test result which could be a 1 in a million mistake.

It also means dealing with the unknown, as death is an almost certainty without the meds.  Lots of resources out there to deal with death.  But POTENTIALLY nasty side effects?  Ones where you can lose your job, or lifestyle... or your secret?  Scary shit that has to be faced.  Death just happens whether you are ready or not.

[AlanBama]

good for you strykern!

So a2z, you're saying that Death by AIDS would be preferable to experiencing side effects of meds?   I don't follow your train of thought here......

as death is an almost certainty without the meds.  Lots of resources out there to deal with death.  But POTENTIALLY nasty side effects?  Ones where you can lose your job, or lifestyle... or your secret?  Scary shit that has to be faced. 

What resources are there to deal with death?  Churches and funeral homes?  Grief counselors for the survivors?  I'm trying to understand what you are getting at...but not having much luck.

Alan

[J.R.E.]

I'm hoping, but not expecting, my numbers to come back well over 350 -- so I can avoid the damned meds and all the side effects that go with them.

Not everyone deals with horrific side effects after starting on meds. I was fortunate and did very well after starting meds. I also know others that are doing pretty well.

I can also tell you that if I hadn't started the meds on October of 2003, I would not be typing this message right now.


Ray

[a2z]

good for you strykern!

So a2z, you're saying that Death by AIDS would be preferable to experiencing side effects of meds?   I don't follow your train of thought here......

What resources are there to deal with death?  Churches and funeral homes?  Grief counselors for the survivors?  I'm trying to understand what you are getting at...but not having much luck.

Alan

No I'm saying something that is a definite is sometimes easier to accept that the unknown.  That's what REALLY scares some people.

[BT65]

Marc and Alan, I'm with you.  I remember the early days of massive doses of AZT and the effects of that (I had to have a transfusion one time because the AZT made me anemic), the OIs (wasting syndrome, PCP) and it's a lot easier to deal with taking meds every day than to return to the "prehistoric" days of AIDS.  We're very fortunate to have the meds, side effects and all.  Yes, Alan, I'm sure we all would have swallowed Drano if it would have been touted as a cure.  Thank God we don't have to do that and they know so much more now.

I'm not really sure what people's great anxieties are over starting meds.  I'm not saying they don't have real issues; just saying that it's almost like a cake walk compared to what it used to be.  I, for one, am so thankful for the meds they have today.  Many, many of us would definitely not be here.  I'm grateful we are.

[a2z]

Not everyone deals with horrific side effects after starting on meds. I was fortunate and did very well after starting meds. I also know others that are doing pretty well.

I can also tell you that if I hadn't started the meds on October of 2003, I would not be typing this message right now.


Ray

And that's great.  I'm one of those I'd find the unknown scary, but I'd take the medication.   (I just need to get the damn numbers.)

[jabez]

My options were to start taking meds, or to croak at age 42.  I opted for the meds with no hesitation at all.   These pills saved my life.  I ran to the pharmacy so quickly to get my script filled, I would've probably qualified for the Olympics if there was a category for Racing To The Drugstore For Atripla.

[hudstar]

I had to meet with someone today who was just given the news he needs to start meds. His is an unusual case for several medical reasons I can't go into at the moment.

I have acted as comforter on several occasions when someone has been given bad news or news they didn't expect.  Today, the reaction from this young man was pretty much what I expected.

But, after leaving him I had to drive to another city 200 miles away. It was an uneventful drive and I made it here by 9 p.m., but it afforded me some nice thinking time.

It occurred to me how fundamentally different my attitude and reaction was when I was given the news I should start meds and that of this young man I met with today.

No, I didn't jump for joy. But, the choices seemed clear to me: Start when I did or wait until I was at death's door and then try to regain the health I had lost.

You all know the story by this time, so I won't belabor it.

But this young man today became fixated on his own mortality rather than on putting up a fight to stave off that eventuality.

Perhaps he never really gave the subject of his own mortality any thought in the past. Maybe, this was a wake-up call. Or, maybe, there is a fundamental difference in how we view the meds and our life with HIV.

I see this repeatedly here on the forums, people terrified at starting meds, willing to face emaciated immune systems tarther that then possible spectre of med side effects.

The "what ifs" seem to outweigh the realities of the horrors of opportunistic infections.

The first thing this young man asked me was whether he should make out his will right away. Then he was concerned about advanced directives. Granted, these are important concerns, but this guy didn't give them a second thought until he got that call this afternoon.

Suddenly, life and death are all too real for this young man.

I just never saw the meds that way. They were not the harbinger of death, the beginning of the end, a precursor of ill tidings.

For me, they were a way to fight back, to stave off the inevitable. I know one day I will die, but with the meds, I was not going to go gently into that good night.

I have lived longer than I thought I would - or could. I have had my ups and downs. But I'm not through yet.

Maybe that is the difference between me and this young man. He sees himself as washed up, finished. I see myself as trying my best to enjoy each chapter of life as it unfolds, replacing the chapter that came before it.

That may make me foolish or crazy. Maybe that's not all bad.

HUGS,

Mark

Mark, simple answer, we are a different generation to them (by age and by our HIV experience) - they were never told they were going to die so issues of mortality did not hit them square in the eyes. I also hear stories from new infectees, I had to sit through a painful HIV support group and listen to anti med talk and about the fear of getting lypo, losing muscle tone and all the other side effects that would demote them on the club curcuit or reduce their potential to compete physically. I just saw this as the new "me" generation saturated with vain beliefs before lifes realities. Funny thing - what I gained out of my one and only support group was to make a mental note to myself not to become a grumpy old man. Times they are a changin!

[hudstar]

As we've discussed before, in "our day" we would have gargled with Drano if anyone had told us that might help.

LOL, I think they did give me Drano back in times of testing new drugs! They were vaguely "orange" flavoured and the size of horse pills! I had to mix two pills in water and drink it down........... I remember gagging every time I swallowed this shit and could never get the taste out of my mouth.

[bear60]

Mark
It must be terribly difficult doing what you do and still keeping a positive outlook.  You cant control how people are going to react to being told they are HIV positive and must start meds, but you can continue to offer comfort and encouragement.  I hope you have a most peaceful Christmas.

[heartforyou]

when that time came, I felt like I had lost the battle

I think that is a very sharp observation Strykern.
I really think that starting meds is like preparing for death.

Back in 1987 I refused meds until 1995, for exactly the same reasons. Like admitting the beginning of the end.
But also, starting meds meant that I was going to be confronted with the fact that I had HIV, where as before that time I could pretend it wasn't there.

I realise now that the possible side effects may not be the true reason not to start meds. But rather the fact that the reality of your infection is now crystal clear.

hermie

[ademas]

As we've discussed before, in "our day" we would have gargled with Drano if anyone had told us that might help.

I did gargle with Drano!  Oh, wait...that was liquid Norvir.  Damn, I get those two confused.

Count me with the camp that views the meds as lifesavers, although we didn't know it at the time I started on the crixivan trial.  I was just glad to have something to try.

As far as side effects, I'm not sure what I think.  I hear some people say they don't have any, and I wish them the best, and don't want to burst their bubbles, but for me they happened over such a long period of time (particularly the changes in my body).  I lived for 12 years with HIV without meds & without incident, and I'm in my 14th year on meds, and they have definitely worked, but they have definitely changed my appearance and affected my quality of life.  I'm certainly glad I'm not dead, but there has been an emotional and physical price to pay, and--honestly--I don't know anyone who has been on long-term HAART (for example, over 10 years) who hasn't seen some of the same effects.

I hope the new drugs prove better over time.

[aztecan]

I lived for 12 years with HIV without meds & without incident, and I'm in my 14th year on meds, and they have definitely worked, but they have definitely changed my appearance and affected my quality of life.  I'm certainly glad I'm not dead, but there has been an emotional and physical price to pay, and--honestly--I don't know anyone who has been on long-term HAART (for example, over 10 years) who hasn't seen some of the same effects.

I hope the new drugs prove better over time.

To be sure, we all have had some side effects, especially over the long-haul. But we had little choice. People may be able to look at me and say, "Yeah, he's got HIV," that's just the way it is.

I could again switch meds to try to reverse or reduce these effects, but each drug seems to carry its own issues.

As for the new drugs, well, they are just that - new. The people starting them are not really any better off than we were in 1996 when Crixivan and Saquinavir were miracle drugs and saved countless folks' lives.

Mark, simple answer, we are a different generation to them (by age and by our HIV experience) - they were never told they were going to die so issues of mortality did not hit them square in the eyes. I also hear stories from new infectees, I had to sit through a painful HIV support group and listen to anti med talk and about the fear of getting lypo, losing muscle tone and all the other side effects that would demote them on the club curcuit or reduce their potential to compete physically. I just saw this as the new "me" generation saturated with vain beliefs before lifes realities. Funny thing - what I gained out of my one and only support group was to make a mental note to myself not to become a grumpy old man. Times they are a changin!

I hope I am with you on this. I do my best not to sound like a grumpy old man, because I'm not.
There are times when some of the changes catch me by surpirse or even leave me behind. That's fine because that's life.

HUGS,

Mark

[Miss Philicia]

By "new" drugs I'd think more like Prezista and Isentress, which assuredly have pretty much no side effects, though nobody is "starting" on these drugs if that's what is meant.  Atripla and Kaletra are no longer "new" drugs.

[Jeffreyj]

My attitude on taking meds was directly influenced on my early aids experience. Like Hudstar said, in the early days everyone was dropping dead. And so many of us old timers were told in no uncertain terms we were going to die.

So I agree with you Mark whole heartedly. I look at a new med now no differently then back then. I am just so fucking grateful that there is a drug to take thatwill help me live longer. Period. Simple.

Taking all of these drugs is the reason I am here today. It's ironic I suppose, your friend looks at taking drugs as "The beginning of the end." Myself, and several of us old timers think taking drugs is our life line to living.

What a difference a generation makes.

After his anger and panic settle down, I'm sure he will soon feel the same way. We all take different routes on the HIV Highway. But eventually we all have the common goal: Living another day. And being grateful for that day.

Mark, you are the best medicine for that young man. he just doesn't know it yet.

Here's to today...

[BT65]

My attitude about taking meds now is much different than it was back in the early 90's.  Probably because of the massive AZT dosing and the blood transfusion I had to have.  I was always terrified when the doc talked about a new drug (like when Crixivan came out) that it might have some horrible side effect that might mean death or something of the like.  And how well I remember people saying the ol' nickname for "us" people-"crix belly." 

Nowadays, the side effects aren't so hideous.  Yeah, I have lipodystrophy and a little -atrophy, but at least I don't have to worry about rushing to the hospital because my hemoglobin is so low I'm almost dead.  Currently, I'm still waiting on my doc getting the results of a phenotype to see what I'm going to go on next.  Hopefully he'll get the results soon.  As a matter of fact, I think I'll call him.