POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: dad1216 on April 06, 2008, 10:46:47 am
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I have spent almost the last 2 years preparing to die…it’s what I was told would happen if I gave up the meds and the doctors…and at the time I really didn’t have much of a choice.
The meds were failing…the side effects had become intolerable….I lost my health care…Medicaid was of no use with such a high spend down…I couldn’t qualify for any assistance from anyone, as I made just a little to much on SSDI.
I accepted the hand that was dealt to me…and was determined to make the best of what was going to be left.
I could have given up my “Dad” role…sent my kids on their way…and become selfish…but I just couldn’t do that…that’s just not who I am…being a Dad means more to me than anything else…although dying would leave them without me…I would have at least known I did my best, given them all that I could…as a Dad should.
So as time slipped away…and I put this disease on the back burner to those around me, but not to myself…I had this one little glimmer of hope that I would make it to the time that Medicare would kick in, and I would have some tolerable health care…and that time has come…May 1st
I have made my appointment with my ID doctor for May 6th …and I am counting down the days…I just don’t know what to expect…my last CD4 2 years ago was 3 with 1%...what the hell could it be now…have I really screwed myself as far as meds are concerned being off them so long…will meds just do what they did 2 years ago and this body won’t be able to handle the side effects….my last regimen was Sustiva and Truvada…and of course making that decision to take meds again…I haven’t even taken an aspirin in the last 2 years…will this be like a newbie as far as the doctor goes?
I know I must pay the piper now for not having medical care for so long…and I am a little scared….but not nearly as much as each day has been over the last 2 years.
Bob
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Hi Dad
The last two years have seen a lot of new drugs introduced for folks who were resistant to prior combos. And some of them seem to having different or better tolerated side effects for a lot of people. I'm hoping you and your doctor can find a new combination that doesn't make you as ill with side effects as the last one.
Best wishes
A
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Hey Bob,
I remember when you posted about this situation. Was it two years already? Wow, I'm sure it seemed longer to you.
I am very glad Medicare is kicking in for you. Now, there are a couple of things you may want to look into.
First, what's past is past. You can't change anything and, when you think about it, your numbers really couldn't be any worse than they were with 3 T cells.
Even though the earlier meds were failing you, there are new meds available that may just be the ticket.
OK, enough of the pep talk. Now, down to business.
Are you enrolled with an ASO? If so, I would make an appointment with your case manager ASAP. The reason I say this is Medicare A and B are fine, but they come with premiums. I know each state is different, but your Medicaid may be useful to pay these premiums. Here it is called QMB and SLIM B, which are programs to help those on limited incomes pay their Medicare premiums. It is a type of Medicaid that does nothing else, just pays the premiums.
Now, about Medicare Part D. The variations on how this is handled is so different from state to state that I can't even advise you. I know here, there are plans to help, including insurance plans that actually cover the infamous donut hole.
That is why it would be good for you to have a case manager familiar with the programs and benefits in your area. No, you may not be eligible for everything, but you very well may be eligible for assistance in some of these very important areas.
At any rate, congratulations on getting Medicare. Let us know what you find out and what your doc recommends.
HUGS,
Mark
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Dear Bob,
I remember the correspondence we had a couple of years ago when you were preparing to stop the meds and live (or die) with the consequences of that action. It sure is good to see that you are still very much here. I know from the emails we've exchanged that it hasn't been easy but I do hope that with the Medicare kicking in soon that improvements will be possible again.
My one word of advice about going back on the meds is make sure your doctor is aware of the risks of IRIS- the immune reconstitution inflammatory syndrome (or something like that).
When I went back on the meds in October after an 18 month break I re-developed shingles within a couple of weeks. If I remember correctly if your starting from a low t-cell count; and with a PI based regime there is a bigger risk of IRIS events happening.
That being said the meds have improved again since you were last on them - my doc restarted me on Prezista, Ritonavir and Truvada - I dropped the Truvada after a week due to the side effects and I've just been on Prezista with the Ritonavir booster for the last 6 months with no side effects at all. Despite that I'm planning to stop the meds again when I see my doc on 18th April (you know my thoughts on meds!).
As for your numbers - they will be what they will be - I'd echo what Mark said in that they can't really be any worse than when you last had them done or you probably wouldn't still be here.
Keep checking in and let us know how it goes in May.
Best wishes,
Emma
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I've been as low as 3 tcells also. I've bounced back to over 400 and took a two year break from meds and doctors.
Just this year I started going back to the doctor my counts where down to 22 and 750,000 viral load after spending 2 years without meds.
Back on meds my tcells have gone up to 122 at last count and undetectable.
It can be done...
I have no intention of taking another break from doctors and meds and I'm sure as hell not planning on dieing any time soon.
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Dad, although I wasn't a member of this site when you posted a couple years ago about the original situation, I'm glad I'm here now to welcome you back.
I second what Mark said about getting in touch with your local ASO asap! You really need help sorting out all this new 'stuff.' Medicare Part D has so many plans, you'll definitely need help with that. And maybe a case manager (at the ASO) can help get you on programs you might be eligible for. It's so much better having someone who knows these things helping out, rather than trying to figure it all out yourself.
I took a treatment break last year, and in three months, my T's went from 600-300 and my viral load went from undet. to 214,000. It's not something I would ever do again. There are more choices now. Good luck and please stay in touch.
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So glad you are going to be able to get some health care coverage. There are several of us who have survived with single digit T-cells for years; so don't lose hope. Things can turn around!
Best of luck, and keep us posted.
hugs,
Alan
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Definitely keep us posted.
hugs,
Sharkie
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I dropped the Truvada after a week due to the side effects and I've just been on Prezista with the Ritonavir booster for the last 6 months with no side effects at all. Despite that I'm planning to stop the meds again when I see my doc on 18th April (you know my thoughts on meds!).
You gave your body all of one week to adjust to the Truvada? Wow.
Bob,
I am also happy to see this new opportunity present itself to you, and I wish you all the best with it. Please keep us posted.
Tim
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Hey Dad,
My TCells were 5 to 20 for about 5 yrs (98 to 03). They are now 260. I totally understand the side effects issue. It's been very difficult for me as well in the past. My doc insists there are more and more possibilities and I believe him. You never know if something won't give you bad side effects (while Sustiva was impossible for me, Atripla works irregardless of resistance tests saying it shouldn't). So, don't give up...
and don't give up on SSDI and Medicaid either. Be sure Medicaid has deducted all your medical expenses from your income. There are also housing deductions and many others. It also doesn't matter how many times you apply....hell if you get it, you have to fill those forms out every three months anyhow...so keep trying. Also, Part D Medicare has kicked in now, so if you are on SSDI...you may check that out...although I find that these folks are probably the furthest from being helpful in answering any questions. I think the Medicare Part D premiums were about $23 a month. Although, they don't cover everything...you might have to dish out about $4000 per year.
I've thought about 'paying the piper' many times...but one never knows when things can turn around....believe me, in my life things have turned from REALLY BAD to just fine about a dozen times now. So try to keep your chin up and do what you can to take care of yourself.
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Dad,
I ave been up and down. I have had insurance and no insurance and have found that the Aids Outreach Center has always been there for me. I too was cleaning house. I was giving away possessions, and made a will, and stopped taking meds. For 8 years. And now, 4 weeks ago, I did a re intake and am finding even nicer people who are helpful and can answer questions and if they don't know the answer, they can get it. I was worried about taking meds, but through much listening of advice and reading on these forums, I have discovered that there a lot of new drugs that have been developed to keep up with these changes in the virus so, I will start taking Truvada/Viramune in @two weeks. I'm nervous about it, but I'm ready for my body to get some help.
Take a deep breath, take your meds, and good luck,
ronnie
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Thanks all for the understanding and well wishes. :-*
I am hooked up with an ASO...and have been for a few years...I just met with my new caseworker last week...and she is working on a few things.
My main issue is Indiana's Medicaid...if I could get rid of them I would qualify for a couple of better programs...one option is that I voluntary drop them, then reapply and hope to get turned down...my social worker thinks this might work, she so agrees that Medicaid is of no use to me since I am at the top of most scales....which is why they won't pay for Medicare Part B...and I have a spend down monthly of $556.
If I get rid of them...I would qualify for Part B payment...(by $1)....and I would qualify for secondary insurance that the state picks up....as long as I don't qualify for Medicaid..
I have my Part D taken care of....I qualified for the extra help, and have $0 premiums, and yearly deductible. Prescriptions will be $1.05 & $3.10....from what I read there is no mention of the donut hole...
So I do have the wheels in motion...some frustrations...but hey, what the hell...
Things are changing...
Bob
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Bob, I live in Indiana as well and I know how terribly frustrating their Medicaid is here, believe me. Do you know they actually have 7 different kinds (of Medicaid)? How they keep anything straight is beyond me.
Good luck is all I can say. :-*
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So I do have the wheels in motion...some frustrations...but hey, what the hell...
Things are changing...
Bob
Hello Bob,
Just thinking about you, and wishing you the very best.
Take care of yourself----Ray
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Well today was my big day...May 1, 2008....my Medicare kicked in ;D
I have been trying everything with Indiana Medicaid to see how I could qualify for what they call QMB, which would pay my Part B...but they kept telling me that I make $160 over per month to qualify, so my Part B would come out of my SSDI check beginning in May. I also received notice from SSA that they would be taking the $96.40.
So...I open up my bank account this morning and there was a deposit of $96.40...WTF
I go to SSA website, and check my benefits...and right there it states that my Part B is paid by the state...WTF
I also noticed that on the Medicare website this morning that my Part B yearly deductible of $135.00 is already met...WTF
Am I going to call and ask what is going on...HELL NO
So far today is a good day..... :)
My first Doctor appointment in 2 years is just 5 days away now....my next "BIG" day....
Bob
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Sounds like things are changing for the good. Keep those wheels in motion.
ronnie
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you just gotta laugh. they whole system is a mess. but CONGRATS on your new health insurance. now, go make up for the last 2 years and get every fucking test you can possibly get done. use every possible benefit you are allowed. just kidding. but seriously---congrats.
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Congratulations, Bob. I live in Indiana also, and can never figure out anything about my benefits either.
Onward and upward for ya!
Luv,
Betty
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Well all in all I was happy with my visit with my ID doc today….I think we hit all subjects that needed addressed…12 vials of blood …an appointment Friday for ultrasounds of the legs and a Adenosine Nuclear test…and of course those prescriptions…Viread, Ziagen, & Kaletra…since it’s been so long, and this is like starting all over, I'll give it another shot...but my past history is if there is a side effect, I will get it…
Now it's just the waiting game to get all those labs back, and see what all they reveal.
Bob
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What is the Adenosine Nuclear test for?
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What is the Adenosine Nuclear test for?
It is a stress echo test on the heart...since I am unable to do a treadmill test, as walking a short distance causes my legs to throb...they do the test by raising your heartbeat, as if you were walking on a treadmill...they inject you with a nuclear medicine and take all those cool photos of the heart
I have been having difficulty breathing...if I really do anything with exertion I have horrible chest pains that go all the down the arms to the palms of my hands...almost like an extreme panic attack...they hurt like hell
Bob
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Oh, I had never heard of that. Sounds pretty serious, though. Good luck.
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Hey Dad
I didn't know all this was going on. I mean I remember you posting 2 years ago and how things weren't going so hot and I was sorta, kinda waiting for the worst of the worst. Well, this thread is about the best of the best. Boy I bet you and the boys are happy.
June 15 is FAther's DAy. Hope you and the boys have a good one~~~
robert
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kinda waiting for the worst of the worst.
I have to say that really hit home....I have been prepared for the worst for the last 2 years...I never dreamed I would make it to this point, just goes to show you how this disease treats everyone different...that dark cloud that was hanging over my head since the doc gave me 6-9 months 2 years ago is now passing by...I see a future...and I so want to bitch slap the old doc... ;)
So I got the meds...I have yet to start them...I thought I was all prepared...yet those memories of all my past failed regimens keep haunting me...and what they did to this body...
I really want to wait until some of the labs come back...because you just never know...
I know the doc wanted to get me back on some sort of regimen...but I was a little surprised he did it before seeing any test results...
The "house pool" is up to $65 for the one closest to my CD4 count....my youngest (god bless him)...went high because "I don't want you to have AIDS anymore"... :'(
I love my kids so much....
Bob
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The "house pool" is up to $65 for the one closest to my CD4 count....my youngest (god bless him)...went high because "I don't want you to have AIDS anymore"... Cry
See, Dad, you really made my day. You hit all the emotions...humor, mischievous, witty, blue. All such seemingly small, inconsequential feelings that make us all grateful with meds that work that should be affordable and accessable.
It's a shame it has to be so hard to want so little.
robert
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I just came across this post so sorry for posting late. I understand all your frustrations with Indiana Medicaid since I live there too. My spend-down is $942 a month. Medicare will kick in June of 2009 so trying to hold out till then.
I'm glad you are back on meds and hope they will be easy for you to tolerate.
AA
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A quick little update…
I won the “house pool”…my CD4 came in at a whopping 44…and I had guessed 45…but being the nice guy, I took the money and the boys and I went to Chili’s for dinner…
Still don't have the results of the VL…and really waiting on the genotype test to come in.
The results of the “heart stress tests” came back with not very good results as they found blockages, and damage to the heart. What I consider panic attacks were in fact heart attacks. My blood pressure is way over the top…It’s been an average of 195/90 and as high as 216/105…so yesterday I started the beta blockers and cholesterol meds…and will see the doc Monday for the “action plan”…I’m sure a hospital stay is in the very near future…
Bob
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Wow, Bob. It seems you have tons of "shit" on your plate. Good luck with seeing the doctor and trying to get these things resolved. Please let us know how you're doing.
Luv,
Betty
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Bob -- I'm glad you're getting the genotype done. Let us know how it goes.
We've got a great lesson on resistance tests here:
http://www.aidsmeds.com/articles/Resistance_7509.shtml
Good luck with the restarting of your meds!
Peter Staley
Founder
AIDSmeds.com
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Hey Bob,
I am glad you have gotten started with the docs, but sorry you have been seeing so much of them. :(
So, have you started your meds yet? With your CD4 at that level, did your doc add some prophylaxes to the mix, like Bactrim, Zithromax or Dapsone?
Hang in there.
HUGS,
Mark
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I'm sorry to read about you going through all this on top of everything else. It's great that you are finally able to get on Medicare as Indiana Medicaid sucks! I travel to Indianapolis and go to IUPUI for my non - hiv stuff and I have been able to get some financial aid through Clarian Health at IU Hospital. Big Kudos to you on being such an nice Dad and treating them to chili's with the money from the house pool!
All the best,
AA
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I can't believe that I have done this...
While taking my last dosage of meds last night, I realized that I have been taking only half of the Kaletra. Instead of taking 2/200mg twice a day I have only been taking 1. Is this an issue, or should I be okay with just starting to take the proper dosage now? It has only been 2 weeks since I started back on a regimen.
With all the issues over my heart and all the meds for it, I just messed up, and I have been so good about taking my meds on time.
I will see my cardiologist this week to see if the heart catheterization can be done. Right now they are putting it off because my immune system is so bad and they don't want to risk infection, however he is concerned that it's just going to get to the point that they will just have to take the risk. The Vascular Surgeon is also waiting for the same thing before he starts his thing with my legs.
Bob
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Hi Bob, I'm no expert on meds, but I would just start taking the proper dosage of the Kaletra today (I'm on the same thing, btw). I don't know if not doing it for a week would hurt or not; maybe someone with more knowledge in this area will chime in.
Good luck with your heart problems. I hope things can be worked out for your best. Keep us updated!
Luv,
Betty
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Bob -- I'd be lying if I told you there's zero risk that the lower dose might be problematic, but I'd bet good money everything will be fine.
The risk here is that your body had suboptimal dosing of Kaletra, leading to viral resistance to this protease inhibitor. However, resistance only occurs if the entire regimen is too weak to suppress viral replication.
The fact is that you were on one of the strongest 3-drug regimens, and that Kaletra is one of the strongest antivirals of all. This regimen probably has a rather large fudge factor for mistakes like this.
So here's the deal. Let's not worry about something unless there's an actual problem. Stay on the meds, and keep testing your CD4s and VL on a regular schedule.
FYI -- I once made a similar mistake, forgetting to put my Norvir booster in my weekly pill box, and doing unboosted Reyataz all week. I was fine.
Peter
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FYI -- I once made a similar mistake, forgetting to put my Norvir booster in my weekly pill box, and doing unboosted Reyataz all week. I was fine.
Peter
I did the same thing with Lexiva for a week. I wasn't used to having Norvir and forgot it was in the fridge. I have been fine, so far, and its been about seven or eight months.
Keep taking those pills and keep us posted.
HUGS,
Mark
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Bob,
Just want you to know that I am thinking about you, and wishing you the best. Stay tough !
Take care---------Ray
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Well tomorrow is the big day for my heart catheterization...when I saw the doc I found out that I have had more than 3 heart attacks...I knew my chest was hurting more than it should...
I will probably end up with a few stints in the heart...the doc isn't ruling out the possibility of open heart, and for me to be prepared for it, he just wont know until he gets up in there.
All a little scary...
I haven't had time to worry about it since we got hit by the flood here in Indiana...our town is a disaster..we were land locked for a couple days without power & water...all our grocery, pharmacies, fast food were hit hard..most people have no flood insurance, as it's not available...it was unbelievable to see the river that's a mile away flowing up the cornfield behind my house...
Oh well.....another day..
Bob
Here is a aerial shot of our area
[attachment deleted by admin]
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Hey Bob,
Wow, the flood looks nasty. I think I will stick with drought.
I am sending copious amounts of positive healing energy your way for the heart procedure, et al.
You will be in my thoughts.
HUGS,
Mark
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Hey Bob,
Hope all goes well tomorrow, I'll keep you in my prayers. You may have read that another LTS Damon (somdamon - "Cardiac Blues") is about to undergo a heart cath, and is quite nervous about it......so perhaps you will be able to tell him more after tomorrow.
hugs,
Alan
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Hi Bob,
I will definitely be keeping you in my thoughts tomorrow.
I live in Indiana as well, though in the Northcentral part. I've seen what the flood has been doing. Sad.
Good luck and please let us know how things turn out.
Luv,
Betty
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A quick update, as things are not going well for me right now.
I have to have a quadruple bypass done, however my immune system is in to bad of shape to take the risk of open heart surgery because of the risk of infections. So lots of meds until my counts go up enough, that they feel it won't be such a danger, if they don't go up then they will have no choice but to take the chance.
I am having stints put in my legs next week as the arteries going to the legs are 95% blocked.
They also found blockage in my neck, and will be having stints put in after the legs get fixed.
A lot to handle, but isn't that what it's all about sometimes…
Bob
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Bob, I am so, so sorry to hear this. I hope your immune system rebounds quickly. I'm thinking about you.
Luv,
Betty
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Well,
that's just you, all over.
At least everything has been found and has a plan of action, and is getting done.
good luck
will be waiting to hear how it all comes out
ronnie
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I went in for an ultrasound of my neck on Wednesday...at the end of the procedure the tech said "I hate to tell you this, but our protocol requires that when we see certain things we cant let you leave without contacting the doctor"...oh great!
Turns out the carotid artery is almost completely closed...
So now they push back putting in the stent in my leg...and will be having surgery Thursday for them to remove the inner lining of the carotid artery to remove the buildup....
damn...damn
Bob
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Wow. Sorry to hear about this. Just want you to know I'm thinking about you, Bob.
Luv,
Betty
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damn damn damn is right.
Goddamnit Dad.
I'm so sorry. Well, stiff upper lip and all that but whatever else I say will sound just as trite.
My best to you and the boys.
robert
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Sending good thoughts your way for better health. Pulling for ya. YaKa
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Well, that isn't what I was expecting either.
Sending you all the best to get through this,
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Dear Bob,
Sorry to have only just caught up with your news as I've been away from here for a while. My first thoughts on reading about the heart attacks were 'oh bollocks' and now the bloody carotid artery as well, you sure have a lot to deal with at the moment.
I can only hope that each procedure they put you through works out for the best and your immune system continues to improve with the meds so that you can get the heart surgery done with as little risk as possible.
I hope you and the boys are coping with all these new health issues as well as can be expected.
Thinking of you all and I hope next Thursday goes smoothly,
Best wishes,
Emma
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Thanks for the replies
I am not doing well at all…
I had the whole carotid artery surgery done, a 7” incision down my neck…nice battle scar…had 2 stints put in the leg…another heart cath…all in the same week…
I see the heart doc today (Monday July 14), as they don’t think they should put off the bypass much longer…no matter what the risk with the HIV…
The HIV meds won’t stay down…I’ve had to stop them…
Another round of wasting…I have lost 25lbs in the last month…180 to 155
I have been having severe stomach cramps that last for hours upon hours, day after day.
I have very little energy, walking from one room to another exhausts me.
My blood pressure is on the rollercoaster again…running 190/95…then dropping to 70/40…
I’m a mess….
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So sorry to hear you are not doing well....
Keeping you in my prayers. I hope things get a LOT better real soon.
hugs,
Alan
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Dad -- you're right, none of this sounds good at all. Forget the HIV meds, and tackle to biggest stuff first. I'd get the bypass as quickly as you can.
Also, have you asked the docs about all the GI problems (nausea, cramps, etc.)? You might not have HIV-related wasting, but some sort of undiagnosed GI issue.
Please keep fighting.
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Hey Bob,
Damn, you've really been through the ringer lately.
There isn't much I can say except I will be sending lots of healing energy your way and will keep you in my thoughts. I hope things begin to smooth out for you.
I agree with Peter, tackle the big stuff first, worry about the meds later.
HUGS,
Mark
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Hey dad, just wanna say I wish you all the best and have a quick recovery,
Hugs, Shaun
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Bob, I'm thinking about you and sending lots of good wishes your way. You'll be in my prayers, truly. Keep on keeping on, please.
Luv,
Betty