Subscribe to this blog's feedSo I am staring at my pile of pills. Two Kaletra, an AZT, two Invirase, Bactrim. Add to the mix a Claritin and a couple of Tylenol for the inevitable headaches. I will wash it down with a teaspoon of Mepron, and make sure I eat a decent meal with it, though the meds have made my taste buds interpret anything as metallic. I’m bitching, I know. Worst part? I isolated myself from anyone who might want to come over and hang out, mainly because Kaletra gives a person gas beyond my capacity to articulate. It's the worst of stuff that's why forensic examiners dab Noxema or Menthol ointment under their nose before unzipping the body bag. It's like being an overinflated bag of humiliation. But I digress.
Thing is, I have a viral load well over 500,000. I have roughly 40 T C ells left to play with. My round of PCP has left me weak, tired, skinny, and far closer to the other side of the dirt than I would prefer. I would love to have more time to research the meds, to wait for the next development, to fundamentally change my life, my personality, address the myriad of issues which have historically impacted my adherence to and management of the highly effective, yet highly toxic meds available for HIV treatment. Many of the meds I have tried in the past have been reformulated, reconfigured, made easier to tolerate and at lower doses. Many more meds, including some great integrase inhibitors, are set to be released as early as April or thereabouts.
Time, though, it a luxury I don’t seem to have. When I asked my doctor what the difference was between starting a med regimen NOW and waiting till, say, April for the new stuff, he just looked at me and shook his head. I have lost about a hundred T Cells since I started getting sick in August. Don’t have a hundred more to go. Zero, apparently, is not a good number at which to start HAART therapy. And he said point-blank that I would not be in good shape if I waited. So he put me on this, older regimen (with an added extra PI boost of Invirase) to tide me over, start reconstructing a semblance of an immune system, and beat back that viral load while we all wait. Wait for the better drugs to become available.
But while I wait, I stare at the pile of pills. Twenty one pills a day, not counting the liquid PCP treatment/preventative or the clonazepam that helps me to sleep at night. And ten of these pills carry some side effects. Honestly, the old formulation of Kaletra (the huge orange gel capsules) gave me FAR worse side effects than these have done so far. Still, with as beaten up and depleted an immune system as I seem to have, my favorite rooms in the apartment have been the bed and the bathroom. Old Kaletra = scarcely controllable explosive diarrhea seventeen times a day. New Kaletra = shaves that down to ten times a day, give or take my amount of caloric intake or the stupid notion that I could walk to the laundry room and back.
So for the time being, I am on these drugs, side effects and efficacy with which I am very familiar. And each time I put the pile in front of me, I cringe. They are nasty, nasty things. But something in me wants to thrive just a touch more than it wants to be merely comfortable.
My adherence sucks. My history with the meds sucks. But whatever I have done, I have turned what could have, maybe SHOULD have been a plummet to the earth into a semi-controlled glide. It’s taken me a LONG time to get really sick, and my failed attempts, a month here, three months there, to adhere to therapy have bought me time. Time for the next big thing to come out, time for the research to move just ahead of my virus and it’s destination. Time for me a embark on crazy stuff that everyone does, from self-medication to serial dating to growing older, gaining gray in my hair and some perspective in my heart.
But time’s up.
So I gag down the pills, at the cusp of feeling JUST a little better (my body’s signal that its time for more toxicity). I settle in for an evening of television, ferret cuddling, extended moments to the bathroom, and horrible gas. I pour some more Coke Zero out of the can. I wait for the foam to settle before taking the glass to my lips. Giving it time.
Giving time to the both of us.
Alright, Mister Man! You ain't gonna scare me off with your side effects! I am usually left kinda speechless by these blogs, so hardly ever know what to say here. Just look for mail from me in the usual spots. I'm gonna be heading your way again within the week. Be lookin'.
Jonathan,
I know you are tired. I have been there with the PCP. Took Mepron (eat with a high fat meal = toilet time). That was loads of fun. It was a five month war with several battles.
Let me pass along what I hope will brighten your outlook. My T's at discharge were 102 and my VL was 800K. I was not on meds. I went from 181 pounds to 138 and could barely walk. My hair fell out and has since grown back. You have desribed the rest of how I felt in your own words.
The hope I pass is I was giving up, but that was 2001/2002. Today, I have no VL, my T's last check were 786 and 44%. This will be you. I know you can do this. You gotta stick with your meds that is the key. Don't miss a dose.
Look, I live in Atl and I have seen you a couple of times at Outwrite last year. I know you have friends, but if you need someone to run to the store or pick up your meds, please let me or some of your friends know.
Don't isolate and shut yourself out. People are here and you do not need to do this by yourself. Again, the hand is extended by a stranger you have never met, but one who wants to see you bounce back and I know you can do it.
Better days are ahead of the dark one. If you need some errands or just want to e-mail and vent, please do.
Take your meds and cuttle with your furry cuties!
Roger
Sweetieweasel and I send you big kisses, and all our love. We keep you in our hearts always.
JK,
I am so glad that you are stronger and that you are getting back on meds. I have sat and worried that you might not do this. I know that I could ramble on about April but I won't. Just know how cheered I was that you appear to be prepared for battle once more and that I fiercely cheer you on from the sides and all decisions you make.
Rich
I don't know whether your inadherence in the past has been due to the side effects or perhaps a case of "you're-not-the-boss-of-me-PILLS," but it took me until losing 30 lbs with colitis in 2002 to finally start never missing a dose, and to my absolute shock, I actually achieved undetectability in a year (after 10 years of never even getting close.) As you adhere, your immune system should improve and the side effects lessen. But if I can get adherent while I was still a full-blown drug addict, anyone can.
Hope you write more often. And how was that visit home?
Jonathan,
You know one thing that you should really look at when taking med’s is the dosage. I have a fantastic doctor at the VA I go to and he looks at you as a human and knows enough to change the dosage by you body and other physical traits. I’ve been undetectable for 7 ½ years of 8 being positive.
Keep going
John
Hugs. Sigues brillando, despite everything.
Hang in there! We are all in this fight together. Life changes dramatically. Relationships for many of us have changed, are guarded in a way they should not be. The gas, is a pain, isn't it!! My doc has recommended simethicone, off the shelf. I take it when the gas problem gets too much to stand. It works! I do double the dosage though. That constant bloating feel from this problem is hard to deal with when you are in public places so the simethicone helps! WOW, when reading your blog post, I find myself taking some of the same meds and experiencing some of the same feelings of just getting damm tired of dealing with it, BUT we must. Life even without HIV is short, with HIV it is harder, but I guess we need to be thankful we are here for our family and our friends. You tend to learn very quickly in our situation that life is not just about self.When we read your blog, it makes that lesson even more clear. Again, hang in there!
Ain't it so! Every day is a new struggle. Pills, pills and more pills. If being on time was the only criteria for success today, I would be dead. I procrastinate every day/ It is a struggle for some reason to make myself do it. But I have a normal t-cell count and I am undetectable. That is after PCP, vl2,000,000+, open heart surgery, etc, etc. I am still here. I like seeing the grass from above, don't know why I am here, but I try everyday to help someone else.
I just want to say hang in there. I am not positive but I have a boyfreind whom I love with all my heart who is. He has had full blown AIDS since 1993. He was doing well til the last year or so. Since I met him IN July of 2005 his viral load has gone from 400,000 to over 4mil!and he had NO T-cells from the time he was diagnosed, yes he had all this WHEN I met him! He told me within 20 minutes of meeting me and I fell in love with him anyway! Some may call me stupid for even staying in it a short while but I say your heart goes where it needs to go and I love this man with all my heart and soul so I have stuck by him for almost 2 years now and intend to stay with him til the end, mine or his whichever comes first!
But he has learned somehow, beyond my capability to understand, to deal with this on a daily basis and like you, is determined not to let this put him under if at all possible! He has been through many many treatment regiments since that time and some have helped a little, some not at all.
He loves life and has new Grandchildren to love as well as me. I call him Superman because he has been through so much and survived so much against all odds. He was told orginally in '93 that he would survive ,maybe 6 months to 2 yrs and now he calls himself a teenager because he counts his years now by how many he has survived this thing!
He goes through depression in small doses and manages somehow through love of life and the people who love him, to buck up and become even more determined to survive.
Just keep placing one foot in front of the other and keep your head up! Never give up! I wish you all the best!
Linda
Hi Jonathan,
You sound a lot like me. I have been on and off numerous regimens over the last 20 years. I was on AZT in the very beginning when that was all there was. I will never forget the horrible metallic taste. That was the only med I have been on that caused that taste.
Currently at 49, I do not have any idea why I am still here. I am pretty sure that I was infected when I was 14 in 1972. When the word started to spread around 1983, I had no doubt that I was infected. While all my friends were testing positive, how many times did I hear them say "why me"? My attitude has always been "why not me". I had certainly done all the things that brought it on. We did not know better back then, however, I wonder whether I would have changed anything if I had known the risks.
Life certainly is never dull with dealing with the illness, the meds, the Bureaucracy, and the side effects. My T Cells are currently under 100 and my viral load is off the charts. I too will have to go back on meds eventually but I am planning to wait until a better combination is available. I have gone up and down from 50 to 500 T Cells over the years and many times go back to undetectable.
Although my doctor never agreed with going off the meds, I did what I knew was right for me. Med Holidays always seemed to make sense to me. I started taking med holidays early on, well before others had thought about taking them. I made the decision without my doctor's approval and to this day, I am not resistant to any of the HIV meds. I attribute that to strictly adhering to a regimen when I am on one and stopping cold turkey when I choose to discontinue due to the side effects. This strategy seems to keep the virus from mutating and building resistance to the meds.
My friends tell me I am crazy but it has worked for me and I tend to feel much better when I am off the meds even though my numbers look horrible. I have known people that lived for years with Zero T Cells. I also think there is much more to being healthy than the numbers.
Regarding the diarrhea side effect, I had tried many things to no avail until I was prescribed Lomotil. At the regular prescribed dosage of 1 every four hours I had no success. I found for me that I need to take 4 to 6 pills at a time and it works like a charm. My doctor told me that it was fine to take the high dosage.
I hope things look up for you in the near future. Good Luck.
Steve
Jonathan...
I would really like to meet you. Just to talk. (God, this seems so stalker-esque!) We exchanged some emails in the past, but I doubt you remember me. Anyway, you're blog is the one I come to for inspiration and reality. Hang in there. I do hope we meet some day. I almost went to AMG 06 just to meet you, but chickened out at the last minute. Oh, well.
Still, take care.
William
Dear Jonathan:
I know how stressful it can be to live with this disease. There are lots of times when you just wish you could spend one day being HIV negative. I have always thought of the medication as a constant reminder of no matter how well I feel - I still carry this dreaded disease. Yet, I down those pills everyday without fail because I also value my life. I wish I had felt that way before I became positive. However, since there is no going back, I am grateful that there is life saving medication that continues to keep me well. I hope that you will continue to consistently take the medication. For now, it is the only way to ensure your current and future health. Be well, my friend! And remember, you are not alone.
Sincerely,
Vickie
Hi Jonathan,
I read your blogs and enjoy them immensely. Even when you are obviously feeling very lousy, you never cease to make me laugh...
I know what you are going through bse I have been there (and I'm in Africa). I know this sounds very insensitive but sometimes I read the options available to you there and I envy you. Pse every time you dither abt taking your meds, think about the people (like in Africa) to whom they are not accessible or for whom they are too expensive to afford.
I'm currently taking Kaletra (the old one. Didn't know there was a new one) and Truvada - and are still suffering through all the side effects. Some days it's really bad. The upside is my Cell count is now 900 from 20! And my viral load is undetectable. Please hang in there - and lisen to your doctor, at leaast for now:)...and count your blessings. Ul pull through. We are praying for you. And whenever you can, pse keep writing.
Jonathan. I understand what you are going through..since I am an HIV treater...Inf disease doc. You are able to make it. You are young, hope springs eternal as they say. Ask your doc to start you on once daily enfuvertide/Fuzeon, + ritonavir boosted Prezista and restart once a day Truvada.
This HAART is likely to work, regardless of genotype data, is currently available, unlikely to cause gas and nausea, and VERY likely to make your T-Cell count rise..and when available in the next several months you can add the Merck integrase inhibitor.
This is an expert treater's advice.
Stan
Great!
great to be alive
inspite of all the troubles
troubles...with its pain and guilt...
has its good side...you know...
it slows us down and teaches us great lessons
lessons of dependance.....
dependance on medicines even if you dont want to
dependance on friends and family relations
but most importantly
dependance on God....
God..who through his son JESUS CHRIST...knows all the answers to this huge puzzle
hang on....
but hang on someone who can help
and that is JESUS
I tried this last minute dependance some years back..
when all hope was lost and death was embracing me......
i cried to HIM......
and made a promise....
a cry of dependance on HIM for salvation and instant deliverance....
with a promise that...if HE did that....if He changed my story and saved me.....
i was going to live the rest of my life for HIM
indeed i have lived more than a decade after that deadly prayer and promise....i now have a good life...and tell my story to freinds...
trust me....
your story can...and will change
if you give hope a chance
and depend on the dependable savior
TRY HIM....
Frank
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I feel your...well, let's just say that I feel for you. I have been on your road and managed to make it to the next fork everytime. Everyone, including my partner is long dead yet, I was the one who was supposed to go first. PCP twice bracketing a nice case of PML, along with "0" t-cells. The last time with PCP they kicked me out of the hospital. (Evidence seems to be that I was a mean patient.) After 2 days at home, my partner called my mother as I was being intolerable at home. She arrived and he left the country. He was just a little thin skinned by misdirected abuse. Anger, she knew, was my healing process. That and 2-3 meals a day at the Picadilly. (Try the Red Velvet Cake.) Mom died in December and then that bastard, my partner, died the following March on my already deceased dad's birthday. I still don't recall giving anyone permission to die....let alone them. And then I got better. That damn Crixivan study sort of turned the tide for me. Not really the Crix itself but the week that my part of the study opened up and I got to add my choice of drugs to the mix all hell broke loose. I venture a guess that it was not 6 months later and I was back at work. I HAD A WEAPON THAT WORKED AND I WAS NOT AFFRAID TO USE IT!!!! What a vile regiment it was though. And I never really got over that nasty, foamy, chalky, sweet taste. Ugh! But I had tasted success and it was sweet. I'd try anything new at that point. My goal was simplicity due to my working conditions. That was over a decade ago...give or take. I'm still a vile human being to be around when I'm sick. I'm on what will probably be my only drug holiday. My doctor keeps putting my off because my test results are still better than they have a right to be but, I feel rather un-armed. He wants to try a new combination which means I'll probably be off work for a couple of weeks to make sure I don't have any psycotropic (sp) reactions. They always see to be my down fall. "Take a pill and go a little nutz." I honestly might trade you the rancid gas for my crying jags or urges to kill. It's a tough road my friend. But it is so much better than the alternative. Arm yourself, grit your teeth and bring your gas to the front of the line. I'll be the one still swinging the sword. Swinging the sword is part of the cure. Like the journey is the most important part of the destination.
Jonathan - Roger (2nd comment from the top) says it ALL. We are here for you more than you know!!!! Stay as strong and determined as you are but let those of who will help you do so. Its not a matter of being weak by letting us do so...its a matter of expending your strengths and energies where it matters: living a good life, communicating your vast knowledge and experiences with others, and more. Lots of love to you, dear!
Jonathan, would you please contact me through my email address. I wihs to ask you a question not necessarly best for blog communication.
I look forward to hearing from you at your earliest convenience.
So I am 25 and I met this guy things were going great the sex was awsome protected at first of course we both got tested and I came back negative. He got tested and his came backa few days after mine his doctor called and said all is clear your in awsome health. But the forgot to tell him that the HIV test still had not come back. So we figured were commited and we care about each other we gave the condoms a break only to find out 2 weeks later that he was positive. And believe me 2 weeks when your 25 is alot of sex my friend trust me. So now im holding out the best hope and at the same time im not afraid, I got another test on friday the 9th and it was still neg but that does not mean a thing seeing as how it can take awhile to rear its ugly ass head we have stopped haveing sex until we can figure things out. I really care about him but he has changed a bit from this and I fear that things will not go much further than they have. But I refuse to let this beat me and I refuse to give in and be afraid I will Kick its ass should it rear its head, Your not the only one out there dealing with this but dont forget for one minute man your important and you matter to someone. Hang in there and be strong I know deep down inside of you there is alot of fight left.
Hi there,
my name is Lisa and I am a journalism student writing an article about HIV medications and the difficulties of taking them (side effects etc) I was wondering if I could speak with you, or someone you know over the phone about it because I think that most people are unaware about the medications available and the side effects/benefits of them. Please let me know if this would be possible by emailing me. Thanks very much for any help you can offer,
Lisa
I am 20 my name is josh. I have tought i have had hiv for the past 2 years but was 2 afraid to get tested. In my mind somehow i convinced myself i was poz. I came out when i was 18 and was un educated on hiv and gay men. I had sex with a couple of guys without a condom. Ever since then i thought i was poz. Thought aout it every day. I run a resturaunt and have 25 employees and am considered to be very successfull for my age. I got sick 3 times in the past 2 months. I figured it was hiv. Yesterday i decided to get tested. I am NEG. For years I was sure i was poz but didnt want to confirm it. NEG thank god wut a weight lifted off my shoulders. It was mono. that is why i have been sick. I will never have sex without a condom again. This whole thing has motovated me even more now. Plan on doing so much with my life and plan on fighting for poz people and investing in companies that are developeing hiv meds.