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Pages: 1
LuvDaPug
Newbie

Reged: 07/08/01
Posts: 2
Side effects & a 2 week hospital stay
      #18995 - 07/08/01 09:21 AM

Hello Folks :)
I hope someone out there reads this post, and knows someone or something that can HELP us.
I will do my best while explaining what has happened to a basic so your not sitting here reading this all day.
My husband has HIV and was on a medication called Fortavase, which made him always vomit, and this happened 2 to 4 times a DAY, almost EVERYDAY, for almost a year and a half. The doctor wouldnt take him off of the medication, he felt that my husbands blood work was doing to well, and didnt want to take him off of it, but at the same time my husband was weak and was losing alot of weight. The doctor wouldnt listen to us, and I found a new doctor for my husband, and we got my husbands medical information from the doctor he was seeing and went to see this new doctor whom is a hiv specialist/infectious disease doctor.
We explained our concerns to this doctor, and made sure the doctor was aware of ALL medications my husband was on, this included a medication called methadone. If someone reading this doesnt know what methadone is, it's a medication for addiction. My husband is a recovering addict, and started his addiction at the age of 12 years old with heroin and pills and many other things. N-E ways, the doctor was aware of my husbands medications he was on, and was told about how he was constantly vomitting and we assumed it had to be the fortvase, because if he didnt take it for a few days he'd stop puking, then once resumed again, he'd start puking again, so, the doctor took him off the fortavase, and started him on a medication called Sustiva ( i hope i spelt that right), the medication replaced the fortavase, and the doctor told us the nice thing about the sustiva is that he wouldnt have to take as many of them as he had to the fortavase, and that fortavase, the doctor said, was known to cause stomach problems. We were happy and willing to get my husband off that medicine, so, the doctor started my husband on this sustiva, and that was that.
We got the sustiva filled, and he started taking it the day after we went and saw the doctor, and about 3 days later, he stopped vomitting, and we were happy, Thank God no more vomitting. Days went by, and so did about 2 weeks, and I noticed my husband started acting alittle diffrent, and being married to my husband for almost 18 years I know this man very well. Symptoms started with more than usual forgetfulness, like putting the milk in the cupboard, and forgetting NORMAL things. We all get alittle forgettful from time to time, so i'm sure as you read this your probably nodding thinking of the times you locked your keys in your car or lost them or forgot them somewheres, or lost your wallet or purse or misplaced it. Well, my husbands symptoms were of this, BUT, instead of it being ocassionally, it got more frequent..... and then.. as the days went by, this forgetfullness started getting more recurrent, like common phone numbers, not being remembered, or, things he normally does everyday, forgetting to do them. I kept asking my husband are you alright, and he said yeah I feel fine. He himself could not pick up on what he was doing, but everyone around him could. Now it being going into week three on this medication and not picking up that it was this medication he was on, he started bumping into things, falling down the stairs, his replys to peoples questions or conversations totally off the wall, or very immature, and when you confronted him about what he had said he hadnt a clue as to what you were talking about.Then one evening lying in bed, he rolls over to me and sez " babe, something's wrong"... and I said " what do you mean something is wrong, try explaining it to me" and he said " i cant place it, i just dont feel right, but i dont feel sick", and I said is something on your mind? and he said well no not more than the normal stuff, and i said well maybe it's just stress again, you need to relax and your not sleeping right. { i had noticed his sleeping patterns were getting to be more, sleeping ALOT, BUT wasnt waking up groggy or tired looking}.
The symptoms over the days that i've explained above started getting more intense over the next few days, and one morning i woke up, it was early, in the morning, the sun not even up yet, and the bed was empty, and I went looking for my husband and he wasnt in the house, but outside in the dark, watering the lawn. I KNEW I WAS IN BIG TROUBLE, but trying to confront him regarding what he was doing was like talking to a brick wall, he totally did NOT agree with what i was saying and thought I WAS the one off the wall. That day went by alittle , and btw, I had just gotten a new job, a great job, and this was all happening right as i started this new job, and i had went to work the morning he was watering the lawn in the dark and my kids called me at work and said that there father was acting real weird, and had the house totally ripped apart, and he wasnt listening to them at all, and then when the kids tried to confront him, he had gotten in the car and took off. Now, i had just gotten this job, and asking to leave already was not good, i was majorly STUCK.. and i had 4 hours to go to get off work. Finially I got home, and my husband was not home, and he stayed gone for almost 2 days, and when he got home, he was totally incoherant and a neighbor of mine, had to help me coherst my husband into his van to get him to a hospital. We got my husband to the hospital and while driving all he did was ramble on and on, in mixed up sentences, and then cry, and then get angry and then he kept saying he felt angry and he wanted to hurt someone. I was scared.
We got my husband to the hospital, and they sent him immediatly to the nut ward. After being there, and speaking to the shrink the shrink asked me all the medications my husband was on, I told them, he was on a new medication called sustiva, and dapasone, and combivir, and marinol, and methadone, and a pill he sucks on for thrush. The doctor took down all this information, and asked me the milligrams to each and every thing. I explained fully all the symptoms and how they started out of the blue and while i wasnt a doctor, it kind of sounded to me like it was the medication he was on, but the doctor disagree'd, he said he felt that my husband had what is called Hiv dementia. I was horrified, and asked him how this can start like from the clear blue and be like this and he said to me it sometimes does.
While in the hospital my husband started hearing what he called "voices", and the shrink said my husband was physcotic with dementia and had him not only on the mediations he was currently on, but also put him on large doses of ativan and haldol, and my husband was a complete ZOMBIE!!!!! He couldnt sit up in a chair, he had to be lifted up, he was drewling all over himself, saying more bizarre stuff, and all the while I am scared telling the doctor i didnt feel it was dementia but he kept reassuring me it was.
My husband stayed in the hospital one week, and he was released, with all this additional new medication, and when my husband came home, i even had to feed him, because he was so freaked out he couldnt hold his own spoon/fork. After being home 2 days, he somehow got outside and disappeared, and we couldnt find him, well after calling the police, they found him, found a metal mail opener on him , and threw him on the side of the road in the gravel face down, and arrested him, and took him to the hospital to where he was transported again back to the nut ward he was at the first time.
The same doctor being there saw my husband again, and which might i remind you my husbands mental status was mostly gone and no one would listen to me, i kept saying THIS CANT be , this CANT be dementia something isnt right, and they kept saying NO, its hiv dementia and your husband needs to be put in a nursing home where he can be watched, and he needs a controlled enviroment and they were worried about the voices my husband kept saying he heard. Now my husband is in the hospital for the second time and he's getting worser and worser and one day I go to visit him and his feet when i looked down were blown up like blow fishes and all the way up to his knees but his feet were the worst, and i asked to see his feet and i pulled the socks off and his feet were RAW AND COVERED with BLISTERS across the entire bottom of his feet, I was horrified, and now angry and I noticed my husband kept holding his face but i didnt relize till later he had blisters up his nasal passage too.
I went to get the nurse and they told me he had blisters and was swelling and i was angry and said "no [censored]", something is majorly wrong, and they wanted to take him for a EKG of his heart, and I said its not his heart, its not dementia, something is wrong... they assured me it was going to be ok..
Well the ekg evidently came back ok, and they gave my husband creme for his feet and a few days later discharged him again and again i work, i raise two kids and care for my husband, do the bills, the work everything i was beyond describable words. I gothim home, he couldnt walk on his feet AT ALL, plus with the mental status he had he was a zombie. I got him home and later in the night i heard him moaning in his sleep, and I went to him and i pulled the covers down from his face and i saw alittle blood coming out of his nose, and then i pulled the sheets down to see his feet and they were oozing with puss... I called the ambulance right away and they came, and had to pick him up onto a strecher, and this time was brought to another hospital at my demand.
As these days prior to this, when my husband had went into the hospital for the second time, i went on the internet and did some research on hiv dementia and on this medication he was on and to my horror, i found out that this medication can and has caused alot of mental problems, which we were never told could happen, and secondly, my husband is on methadone and it clearly stated a huge drug interaction with sustiva is that you shouldnt take it if you on methadone because it cuts the injested methadone intake up to 48% meaning my husband was in WITHDRAWL on top of having mental distress, and it also stated that there were blisters and joint swelling and pain as side effects. I was so PISSED.. so when the ambulance took him to this other hospital which btw i had told this doctor at the nut ward what i had found out on the internet , he ignored me, and told me i was wrong and kept pushen him full of these drugs.
When we got to the hospital, i followed the ambulance in, and i demanded someone READ in front of me what i had found, and after they examined my husband, they knew something was wrong, and i said now please read this, and they waited for one of my husband infectious disease doctors assoicates to be called down first, and once the doctor was there, he read it and said "bingo", he's have a bad side effect to the medication and i blew up and i said I have been telling everyone this and no one listened, and the doctor said he was never notified and i said no, my husband was in the nut ward for two weeks, and they knew his doctors number and told me they contacted his doctor.. and the doctor said nothing.
So, after him being brought back to the hospital the third time, they took him off the sustiva, but the healing process has taken a LONG time, and it took alot of watching over him, and i was scared to death as well as my children.
I am so angry no one listened to me, and they knew what medications my husband was on from the get go, and they never told me what the side effects were, till after I told them i did some reserch and found out what they were.
When i brought my husband in to see the doctor after being in the hospital it struck me kind of funny that they started bringing in cameras to take pictures of his feet, now why do that? are they afraid they messed up?
Well I think they did, the doctor/s and the hospital nut farm did, and I want to know, being from Michigan, WHOM I can call to have someone look into this, legally? this is wrong, and my husband could of died.
I pray someone out there reads this and helps us. Again we live in Chesterfield Michigan, and I'm looking for someone that specializes in HIV/aids.
If you've made it to the end of this post, thank you for taking the time out of your day to read this, and care enuff about us.
I hope to hear suggestions and comments regarding this.
Sincerely,
Anita
Michigan



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Jackie_Blue
Legend

Reged: 10/26/00
Posts: 2028
Re: Side effects & a 2 week hospital stay new
      #19000 - 07/08/01 04:17 PM

Get in touch with an Aids Service Organization. They can be found just about everywhere. Even here in the boon docks we have one not far from our home. They can refer you to doctors, lawyers, counselors and in some cases help people financially (depending on their funding). Feel free to private message me if you want.

PS. Never take the hospital's word they have contacted anyone. In this day and age you have to be a loved one's advocate and do it yourself. Good for you for finally making them listen!



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Anonymous
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19005 - 07/08/01 06:55 PM

These doctors make me mad ... they are evil.

Trust in God - only h can help. And when you ask, he will. Shun drugs and live in Nature ... nature is the mind of God. Drugs are no answer.

-JDL



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4PLWA
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19010 - 07/08/01 08:46 PM

I read your story to the end, and it made me very sad.
I have to tell you, I read up every time my partner is put on any med because this field is for ever changing and the doctors themselves don't know everything. I think that everyone should do their own research and I am so glad that you did and that you were able to show them that you knew what you were talking about. I hope that your family heals well from this experience.



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Anonymous
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19028 - 07/09/01 12:36 PM

WOW. I would immediately contact an attorney. Doctors pay very high insurance because they make mistakes---this is one. You must be your partner's advocate and monitor EVERY conditon and drug he is given, as should he. It is quite evident that you have done that! I too am in your situation, not with the drugs, but a +/- relationship and know emotionally what you feel. Unfortunately I am not in Michigan, but Chicago so I can't help you out much. Contact any attorney and he/she should be able to point you in the correct direction. Good luck to you!



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Anonymous
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19063 - 07/10/01 07:57 AM

Hello Folks.
I wanted to thank EACH and EVERY ONE of YOU'S that took the time to respond to my post.
I am pretty confused as to what I should do, well I know what to do, but it's finding someone that will LISTEN to me, and what happened to us.
Does anyone know of any attorney's or advocacy groups in MICHIGAN that could assist me?
Please let me know and again, THANK YOU VERY VERY VERY MUCH!! please keep in touch with me, as I will do you.
Sincerely,
Anita
Michigan



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LarryD
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19097 - 07/10/01 04:37 PM

What a horrible experience. Good thing you were able to learn about the meds he was taking. This shows why we need to learn all about our meds and side effects. I had one friend die about two years ago from seizures because she was on Sustiva and Methadone. It took a post mortem to get someone to agree that it was the meds and not a relapse that killed her.
Today more than ever "Knowledge is power, ignorance is death".
Peace to you all,
Larry



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LuvDaPug
Newbie

Reged: 07/08/01
Posts: 2
Re: Side effects & a 2 week hospital stay new
      #19126 - 07/11/01 05:24 AM

Hello Larry.
I' d love the opportunity to email you and corraspond with you in regard to the horrific outcome of your friend and what she went thru. This is of utmost importance to me.
My email address is anita black2@home.com
As I expressed in my original post, know one would listen to me at the hospital's, they kept insisting he had HIV dementia, and even put him thru intensive testing, and I still disagree'd, even in the end when they suggested a group home for him so someone could constantly watch over him.
I'm trying to find people that have experience with Sustiva and/or Methadone. Anything you may know, or anyone else for that matter that knows anything in regard to these medications, i'd most enjoy talking with you.
In end to this, my husband is at home, but he's slower if you can understand that. His responses are slower, why? I am assuming from the medications he was on and what it did to him. His feet took a long time to heal and was the most gross thang I've ever saw, and if he attempted to blow his nose it constantly bleed from the blister's also up in his nasal passage.
Folks, I wish I could express to you what it was like, my husband wasnt my husband. Sure the shell of him was here but he was gone. It was the most hell endured, scarey, perdicament I've ever been thru. {quivers}
Sincerely,
Anita Black



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Anonymous
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19266 - 07/14/01 10:29 AM

Hi, I am writing this to you first, because I wanted to let you know that you are not in this alone, and second because of something I read in a local weekly newspaper. I know how harrowing your experience must have been for you. It it hard to know at times what you should do with so many drugs available with so many different side effects. Certainly asking for help and finding a caring and knowledgable professional is a good start. It sounds like you are on the way to finding that help.

The main reason I wanted to write, was not about the specifics of your husband's side effects to his HIV drugs, but to offer up some info to you which may, or may not be of help in your husband's reliance on methadone to fight his addiction.

This morning, I was reading "Creative Loafing" magazine in Atlanta (July 11 - July 17, 2001 - Volume 30, Number 9) and found myself engrossed in the cover story (written by Mara Shalhoup) on a drug called Ibogaine (which is not FDA approved by the way) and it's use as an addiction breaker. I was very intrigued by what I read. It comes from the African Iboga plant and has reportedly been used by numerous addicts to break free from their cravings and really change their lives. It sounds like it has quite a following in the underground but drug companies don't want to touch it because there is no profit in it.

I am not an advocate for OR against the use of this drug. It was simply something that sounds like an answer to a prayer for some addicts. It mentions that there is much onfo on the internet and I am sure that if you are interested you could go to atlanta.creativeloafing.com and read the whole thing.

I only thought I could offer to you what I read. Whether it can be of any help to you and your family I don't know.

My best to all of you. Health, peace, love.




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DrugsKillnotHIV
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19294 - 07/15/01 01:46 AM

Since you did not leave your email where you could be contacted, and The Body chooses to censor and remove my posts, I can only hope that you will contact me at drugs_kill_not_hiv@yahoo.com before they remove this post, too.

Ed Sherbeyn
http://wakeup.to/TheMyth



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Anonymous
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19342 - 07/16/01 10:35 AM

Hi,

I am writing to let you know of two organizations which may be able to help you out.

The first is the Lambda Legal Defense Fund. You may find them on the web at www.lambdalegal.org or you can call their midwest office in Chicago at 312-663-4413. They not only work in gay/lesbian issues but with are tremendous help to those living with HIV/Aids.

The next is AIDS Partnership Michigan. They are a general resource with hep and direction in all hiv/aids issues. They are on the net at www.aidspartnership.org and you can call toll free at 1-800-872-aids.

I hope this info helps. I am in Georgia but if I can be of any help to you I will.

Take care and know you're not alone.



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Anonymous
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19549 - 07/20/01 05:54 PM

Anita, Your story is very heartening. Your love, time and caring are to be commended. I, too, was on Sustiva a few years ago and had a breakdown. It seems my doctor had me on to many medications and the side effects became evident only after I went through one of the worst periods of my life. I am still finding out how bad his 'doctoring' was. My health is worse and more bad diagnosis are coming. I would be dead had I not changed doctors, and my friends agree. I sued my previous doctor, so you should find a good malpractice lawyer and see if you have a case. He will let you know. It is worth a try. Good luck!



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Anonymous
Unregistered

Re: Side effects & a 2 week hospital stay new
      #19551 - 07/20/01 06:14 PM

Contact a malpractice lawyer ... you can find one that will work on the basis of 'you do not pay unless you win'. Good luck and God bless you and your family, you will be in my prayers!



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