Author Topic: Deciding to STOP ARV drugs... (Read 7676 times)

j4r3dj4r3d · « **on:** January 17, 2014, 05:34:33 pm »

Okay, so I've been + now for about two years. I went through HIV infection as a total ordeal -- I was right at 200 CD4 cells when I was diagnosed, and before I began drug treatment, made it all the way down to 160 CD4 cells with a VL of >1,000,000.

Today I am relatively healthy, but now I am having to deal with organ damage as a result of taking ARV drugs. My liver function has decreased, as well as kidney function in both kidneys.

This has brought me to a new crossroad in my life -- continue to take the ARV drugs and live as long as possible.....or do I just stop taking the ARV drugs and wait for <6 months to live and move into a state that has a "Death with Dignity" law on the books.

I've had a LOT of mental things going on -- severe depression, moments of mania where I literally cannot calm myself down......anger episodes....you name it.

NOT sure what to do. Seeking some input -- no option is off the table, but there is a large (and I do mean a VERY large) part of me that just wants it all to be over. Do I really want to be a slave to pills the rest of my life? Absolutely not. Will people miss me if I opt to stop treatment and let nature run its course? Probably....but I feel like with adequate time to prepare themselves mentally.....it shouldn't be so bad, right?

Jeff G · « **Reply #1 on:** January 17, 2014, 05:43:58 pm »

Welcome to the forums . Your post begs a lot of questions . Is the liver and kidney med related or does it have co factors like diabetes or alcohol or drug abuse .

There are other combos you can try so its not an all or nothing thing . It also clear that you are dealing with depression and I urge you to talk to your doctor about it if you have not already . Please do not make life altering changes in your meds while you are viewing your choices through a lens of depression and anger . I made decisions when I was in your situation and it cost me dearly .

You have come to a safe place for support and there is probably not anything you are dealing with that some of us are not or have not dealt with, so you are sure to find compassion and understanding here . If you wont give up we wont give up on you .

j4r3dj4r3d · « **Reply #2 on:** January 17, 2014, 05:53:38 pm »

Jeff G -- thank you for the understanding.

Honestly....I don't feel like I am depressed. It's a very strange feeling -- when you make a decision about....pretty much ending your life (because let's face it, that's the option I am exploring here) you would think it would scare someone into a panic attack (I have a history of anxiety, and it has only increased in the last two years) but I am relatively.....okay with the decision to stop ARVs.

This has caused me to question what's wrong with me time and time again. But....I don't feel like anything IS wrong.

I'm confused I suppose.....but I'm also having to deal with this pretty much 100% alone. No one helps me make my appointments, no one talks to my doctors for me -- my family does not know anything, nor do 99% of the people who are close to me. I've told very few people.

What do you do when you've kind of gotten to the point of giving up on yourself?

Jeff G · « **Reply #3 on:** January 17, 2014, 06:07:13 pm »

You have reached out to us for support and that is BIG .

I did and said exactly as you are doing and your statements sounds like an old quote from me . I am not going to go into trying to tell you what its like to die from aids or be presumptuous and tell you what you are feeling but I can tell you what I think . I think you can be depressed and not know it and I think ... no, I know that was the case for me .

I got treatment and a I see things in a different way now and I am not special, Im just like you and if I can do it you can to .

We have many members who will be coming into your thread to welcome you and offer support and am asking that you keep an open mind and heart and know even if some of us offer tough advice and tough love that it is still love . A little work and time will make a difference in your life ... I'm certain of that .

You have made a big first step here and another step is to print out this thread and let your doctor read it . If he or she is worth their salt they will try and help you when they know the facts on how you are feeling .

j4r3dj4r3d · « **Reply #4 on:** January 17, 2014, 07:14:23 pm »

I'm in a clinical trial for COBICISTAT approval. I was part of the original study, and have gotten carried over into the overflow study.

I don't drink (to answer your question from earlier) and no other drugs except for occasionally (doc prescribed) painkillers, and marijuana (I smoke multiple blunts daily). I'm not sure exactly what has caused the uptick in liver enzymes, but they did tell me that my kidney's were FULL of kidney stones, which is a side-effect of ARVs for people with an increased risk for them. I've had them since I was very young.

I'm......not sure. About anything, obviously.

emeraldize · « **Reply #5 on:** January 17, 2014, 07:27:55 pm »

I just want to welcome you.

j4r3dj4r3d · « **Reply #6 on:** January 17, 2014, 07:31:24 pm »

*Curtsey*

Thank you.

Jeff G · « **Reply #7 on:** January 17, 2014, 07:50:12 pm »

I have had a history of fatty liver with elevated enzymes for over 20 years but it hasn't progressed .

A kidney full of stones sounds dreadful and since you had them a long while I really don't know what t say about it .

I have been poz for a very long time and I have needed to seek support and help many a time along the way . I am seeing a therapist now and it has helped me to refocus on some things I needed to address . I think its rather natural that when we deal with some of the same issues long term that we loose a perspective that you can get from making sense to two people and not just hearing that internal dialog in our heads, if that makes sense .

Its odd how I didn't appreciate how much I can benefit from therapy because I am really getting things done that I thought was things that could never change .

j4r3dj4r3d · « **Reply #8 on:** January 17, 2014, 07:54:57 pm »

I wish I had time for a therapist, and the money. Sadly, I work part time for crap pay, and I'm in College full time.

I feel overwhelmed, and that has caused me to question WHY I'm even bothering to do it.

I grew up kind of poor, graduated HS and moved to California, found out what it meant to live a life with money, and then came back to Texas after a relationship dissolved. Now with all of this additional headache I'm dealing with, with LESS money and a lot more stress.....I just don't know how I even talk myself into getting out of bed to face it all daily. Sometimes I don't.

bocker3 · « **Reply #9 on:** January 17, 2014, 08:36:53 pm »

Quote from: j4r3dj4r3d on January 17, 2014, 07:54:57 pm

I wish I had time for a therapist, and the money. Sadly, I work part time for crap pay, and I'm in College full time.

I feel overwhelmed, and that has caused me to question WHY I'm even bothering to do it.

I grew up kind of poor, graduated HS and moved to California, found out what it meant to live a life with money, and then came back to Texas after a relationship dissolved. Now with all of this additional headache I'm dealing with, with LESS money and a lot more stress.....I just don't know how I even talk myself into getting out of bed to face it all daily. Sometimes I don't.

Welcome to the forums. I am so glad that you have reached out for support here.

The part of your quoted post that I underlined sounds to me like classic depression signs. You say you don't think you are depressed, but that line seems to indicate otherwise. It is the person who is depressed that is often the last to realize it.......
You also say you are a full time college student -- I have been out of college for a long time, but I do recall that there were many support services at school. I have to believe that there is a way for you to be able to talk to a mental health professional at your school for no charge. Please check out your student services.

Your post here is a cry for help -- and a huge signal that you do, in fact, want to find a way out of where you find yourself right now. Please keep trying and stay in touch on here.....

We CARE!

Hugs,
Mike

j4r3dj4r3d · « **Reply #10 on:** January 17, 2014, 08:43:20 pm »

Mike -- thank you for the reply.

Umm, sadly, I live in Texas and student services at the college I go to are virtually non-existent. We don't even have medical services on campus -- only the campus police.

hcj90 · « **Reply #11 on:** January 17, 2014, 09:12:27 pm »

Hi j4r,

Welcome to the forum. This is a great place for support and understanding. The members helped me so much after my diagnosis in 2012...and continue to do so.

I have dealt with depression off and on for probably 30 years. After learning I had Aids, my main goal was to take my meds every day. I knew that was most important. After being on meds for over a year, I have begun to wonder what it would be like not to take them anymore. However, I know the consequences of stopping them. I have an appointment soon with my psychiatrist, and plan to change my antidepressant. I know myself well enough to realize when I'm beginning a downward spiral.

Please do find some help for the depression. It will get better. Your life matters!

Look forward to your posts.

HCJ

mecch · « **Reply #12 on:** January 17, 2014, 09:34:21 pm »

Quote from: j4r3dj4r3d on January 17, 2014, 05:34:33 pm

Today I am relatively healthy, but now I am having to deal with organ damage as a result of taking ARV drugs. My liver function has decreased, as well as kidney function in both kidneys.

Exactly what diagnosis have you had about your kidneys and liver? I have never heard of someone 2 years on today's HIV medicine with destroyed liver and kidneys... That's why I ask what diagnosis you have actually received about that. Perhap its the depression and fatalism colouring your perception of your organ health?

I dunno. I am just putting it out there. But since you are feeling suicidal, is it possible you are grabbing at "health" justifications that really don't hold water.... Depression alone is enough to make one throw in the towel.

As a tiny little side note, lots of people read these forums trying to chill out about HIV and HIV treatment. If you don't have kidney and liver damage because of HIV medicine, your post, claiming otherwise, is only fuelling the fires of fear, around here...

Part of the deal of living with HIV is that we have to get the health care lined up.. If you need treatment for kidney stones, why aren't you pursuing that? What kind of health plan do you have??? Can you get a university sponsored one? Affordable Care Act one.
Have you discussed this need for comprehensive health care with any sort of HIV/AIDS or even the local health or mental health agencies'??

j4r3dj4r3d · « **Reply #13 on:** January 17, 2014, 11:08:09 pm »

mecch --

Thanks for the reply. I'm not sure what factors have contributed, or even if it was just a fluke thing to happen. The only thing that worried my doctor was that there had been a steady increase in liver enzymes between appointments (up to 3 month intervals) and a decrease in certain things they look for in the urine samples I leave at my appointments, which I guess is common anyway?

I'm not the type to seek attention. These are the things I'm being told, and checking into it, sometimes it really CAN be an issue. Could it be my own personal fears adding to the worries? I'm sure that's probably the case. BUT, I'm a small guy. Average height (5'11") and I weigh 115. I've continued to feel kind of.....blah with taking the meds also. They still make me feel sick most of the time, even after all this time.

When I was younger, I drank.....what I would say was a fairly common amount for my age range. No more and no less than the common person at a club or house party (in my case, pasture party) so I'm sure I probably did some damage to my liver then....and like I said I have had kidney stones my entire life almost. Probably when I was 7 or 8 was when I had my first one make its way down, and that was only one of many. So I'm sure I have scar tissue in my kidneys from that ALSO contributing....but I'm speculating at this point. I'm not a medical doctor, but I HAVE been told what I've been told, and the Internet is a fantastic place for information, but you can also read things that make what you've been told feel much worse than what it might actually be.

Point being, I don't know to what extent we're talking, all I was alerted to was it was of fair importance to address soon. And I have been passing kidney stones with a bit more frequency than I have had in the last few years.....so that troubles me a bit as well, because WHY are they forming so quickly?

A lot to think about all by yourself. I feel dizzy just thinking about it all.

j4r3dj4r3d · « **Reply #14 on:** January 17, 2014, 11:10:42 pm »

HCJ --

Thanks for the reply. I appreciate the information, and appreciate the warm welcome.

eric48 · « **Reply #15 on:** January 18, 2014, 04:34:23 am »

Hi,

Welcome to the forum.

I understand the depressed state and sympathize. You'll find lots of nice and helpfull people here

That being said accumulation of 'bad markers' is not just you and many many people get them sorted out one by one.

Kidney stone ... Not even discounting your concerns... You don't even 'feel' them. When you do, you can be sure you are going to have them removed ASAP no matter what. Removing them now, should be a simple procedure.

Liver enzymes: welcome to the real world where EVERYONE has transient Liver enzyme increase. (me, included) : So what ? So what ??

If you had an increase in pubic hair, then, of course that would be a serious concern, but liver enzymes... This is merely showing your doc that something should be addressed by your DOCTOR

End of meds/suicidal thoughts: Do you have any idea how many elderly , SUFFERING from multiple conditions and isolation would love to have a pill than can end their SUFFERING. And you are lucky enough to have that wild card in your hand: so save it for later.

Please come down to reality : committing a 'planned' suicidal course while having youth, health, likeable tiny bottom (I love them) and a future ahead is OUT of the the question. Seek help, even here, but do get those ideas out of your mind

Keep that likeable body of yours in good shape: we can have a better use for it ;-)

Cheer up

Eric

BT65 · « **Reply #16 on:** January 18, 2014, 05:14:19 am »

J4, I would encourage you to find your nearest ASO (Aids service organization) and talk with a case manager about the issues you're going through w/ the depression. They should be able to put you in touch with a counselor who can help you, without you having to go broke paying for it.

Hang in there, and keep posting.

mecch · « **Reply #17 on:** January 18, 2014, 05:20:42 am »

Well please forgive the question: are you a man or woman. I was assuming you are a man. At that height and weight, you are pretty seriously underweight. Have you always been very thin, is that your "set point"?

I am wondering if there are a number of mental health issues that could be in play. You say you are manic and angry among other signs we have picked up as depression.

One basic observation, and you are aware of it, is that you are overwhelmed.
I suppose this includes in a number of areas:
the letdown from the last relation
change of financial situation
how to build a new life, new financial security, etc
being hiv+ and on treatment (and are you young and HIV+? I don't remember seeing your age)
depressed (?) - manic, dark thoughts - certainly not optimistic about your future...

So the basic advice - and because its simple to give doesn't mean its simple to apply - is that you have to compartmentalise the challenges that are overwhelming you. If you need some treatment for your kidney stones - get that... If you need a different combo, see how that might happen... Etc... Even just taking out a notebook and putting all the challenges on a different sheet of paper. And when you can successfully move forward on one of them, you'll see, that forward movement is possible. Anyway, this is one of the techniques my therapist gives me when I feel overwhelmed by too many challenges... Positive movement on one of them can really shade over to a lot of things and one feels more in control of ones life.

If there are no health services on campus you are going to have to take the chance to go to local agencies and figure out what kinds of mental health care you can access, and how to do it... Is that possible?? The idea to stop meds is a sort of suicide ideation and really needs to be hashed out a bit...

Are you in physical pain of any sorts? Do you have a decent material living conditions right now - enough food - secure liveable housing? How are your stats about HIV - cd4 and viral load... ?

Theyer · « **Reply #18 on:** January 18, 2014, 11:03:40 am »

J

Welcome to the forums ,I am glad you found it. Mecch , BT and others have offered thought out good advice , Jeff has shared his own personal history that mirrors what you going through , my bit , I am recovering from yet another Hospital stay , slowly.

We all share a recognition off how depressed you are , as we have also been depressed , I recognize the Manic bit and the increase in anger, but we are also seeing and reading your strengths and what you have got to build on which will get you to quite a differant place , because we have all had to take a similar path.

So I urge you to seek out help everywhere and fight your way to a place you deserve to be , which is defiantly not the space you are in at the moment. And that does not include coffin space.

Keep on posting , make a start with the local ASO , read our lives all the best to you

Michael

j4r3dj4r3d · « **Reply #19 on:** January 18, 2014, 02:19:45 pm »

Everyone, thank you for the replies.

Answers to questions that I can recall from short term memory:

I am a man, I'm 25 years old, yes I have always been this size, from youth to adulthood.....just got a fast metabolism, and a touch of anemia.

I feel totally stupid now. :\ I mean, I feel like a little kid throwing a fit.....but in my head, it isn't like that. But putting everything down here MAKES me feel like I'm a little 10 year old brat that isn't getting his way.

Sigh.....eventually I suppose I'll feel calm, sane and normal again!! I feel like I am on the worst rollercoaster ever, and I want OFF the ride.

Jeff G · « **Reply #20 on:** January 18, 2014, 03:19:36 pm »

Its a certainty you have amazing things ahead of you in life and not many here among us has not pitched a epic temper tantrum along our way ... I did just this week .

The way this usually works is one day you will be the one offering support to a person who comes here hurting and then you can pay it forward . Until then feel free to vent away and take what you need .

Joe K · « **Reply #21 on:** January 18, 2014, 04:33:07 pm »

Quote from: j4r3dj4r3d on January 18, 2014, 02:19:45 pm

I feel totally stupid now. :\ I mean, I feel like a little kid throwing a fit.....but in my head, it isn't like that. But putting everything down here MAKES me feel like I'm a little 10 year old brat that isn't getting his way.

Sigh.....eventually I suppose I'll feel calm, sane and normal again!! I feel like I am on the worst rollercoaster ever, and I want OFF the ride.

Hey J4,

I am glad you found us, because I believe we can help you to see, that what you are experiencing is very normal, but I believe your perceptions to be way off. I have lived with depression for decades and the hardest part about depression is how it alters your perception of reality. Mental illness usually involves some type of chemical imbalance within the brain and it not only affects your perceptions, but your ability to reason and see things clearly. Depression is a mental illness and not a character flaw, nor does having it make you not "normal", rather having it, makes you ill and as with any illness you need to treat the illness.

I want you to stop viewing yourself as "stupid" or a spoiled brat, because they have nothing to do with how you may be feeling. I will guess that your real issue right now, is you are unsure of what you truly feel and with that uncertainty, you begin to question what is wrong with you, when the answer is quite evident. You are in the midst of a crisis and nobody can tell you what you should do, however I will tell you what will work for you and that is treatment for your depression.

Your depression is working against you, as it can cause rotary thinking, where you keep going in circles with issues, without every addressing the root cause of the issues. Yes, you may have real medical issues, however, right now you probably cannot see the facts through your emotions and that is because the depression is altering your ability to think and process information correctly. This has nothing to do with intelligence or character, it has to do with your brain suffering from some imbalance and that is where antidepressants can help you. There are so many options for treatment and treatment does not mean forever. But you need to treat the chemical imbalance first, so that your thinking will become clearer and so that any therapy you undertake will have the best chance of success.

I am so sorry you are experiencing this right now. I have experienced the depths of mental illness and I do understand how sometimes, it just seems easier to give in and let nature take its course. Yet, somehow, deep inside, you realize you need some support and here you are. As frustrated as you feel right now, I will encourage you to stop the "pity party" and get the help you so need and deserve.

I ask that you trust what we are telling you, there is nothing wrong with you, that the appropriate medical care cannot alleviate, but healing must be accompanied by desire. We both know you can do this and deep inside, you know you need to do this, because you realize that how you feel right now, is not the real you.

There is never any shame in seeking the support of others, during times of crisis. The only shame, comes from not trying, because you matter and deserve to be content in life.

Welcome to the forums.

Joe

WillyWump · « **Reply #22 on:** January 18, 2014, 07:24:32 pm »

Hi J! Wanted to say hello and welcome to the forums. You have alot of good advice up there^ and I cant really add to it other than to echo that I think you are a bit depressed.

Look forward to seeing you around here

Hugs,
Will

zettainaoru · « **Reply #23 on:** January 22, 2014, 04:55:22 am »

im sure there will be a cure in the next 10 years.
thats whats keep me holding on.

Since2005 · « **Reply #24 on:** January 23, 2014, 01:35:35 am »

I think you are just dealing with your HIV therefore blaming on Meds. I can sympathize with the ‘dealing with HIV’ issue. I also think you are worried and thinking meds causing your liver and kidney problems. If it makes any feel better, lots of people have kidney and liver issues with or without HIV, but you did mention that you had kidney problems prior to going on meds or pre HIV, right? Sometimes HIV can cause liver issues even when you are not on meds. For example, I am not on meds but doctor found out that there are some high numbers in my liver related testing and was thinking HIV was contributing to that. Luckily, I retested it and number came back normal. Did your doctor do some retesting on the liver issues?

Here is one other thing, if HIV is causing the liver issue then how it would help you if you come off meds? Looking at your number, meds is saving your life and you need to stay on it. There is no "if" or "buts" about it!

Welcome to forums! Lots of people here you would see that are living with HIV over 30 years and hey you can be one of them one day!

Does your school has counseling center? Mine did and I took advantage of that. It helped me greatly and let me see things that I could not see before. Once I remember telling my counselor that if someone finds out I am gay, then I would have to kill myself because that was the only option ‘I was thinking’ about. Please talk with someone if you can’t go to school counseling center. There are many organization can arrange therapy sessions for you if you are uninsured.

When I tested positive, first thing I did was started seeing a therapist. Trust me, it took years after to come to terms with HIV disease but I know for sure, if it wasn't for my therapist, I would not be where I am today.

All in all, wish you the best luck, please stay on meds and start seeing a therapist very soon. You have made the first step by finding us, congrats! Hope to see you more.

Since

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Author Topic: Deciding to STOP ARV drugs... (Read 7676 times)