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Author Topic: IS she really going to DIE?  (Read 4713 times)

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Offline mrsjozy

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IS she really going to DIE?
« on: July 29, 2006, 11:00:56 AM »
Eleven years ago I found out that my mom was HIV positive. She was 31 then and I was 11. At that time HIV had no meaning to me. Years later on my own I did the research and finally found out exactly what it was. Even still at 15 all I really understood was that my mom was sick and going to DIE My family didn't talk about it at all. My mom stayed away for a long time afraid that she would be treated differently. Still it wasn't until one year ago did the virus actually take a physical change in the appearence of my mom. Before the HIV my mom struggled with an addiction and up until four months ago she still was using. She would always say that she wanted to stop but that she would get sick and die if she did. I thought she was using that as an excuse but sure nuff, my mom was tired of the street life and wanted to live a "normal" life for once but soon as she would be a month or so clean she would get really sick and have to go to the hospital for days for her breathing or for her kidneys and the list goes on. It was as if her entire body would just shut down on her if she didn't do drugs. Now, my mom has been clean for four months. The first month she began to rapidly waste and the second month she was bed ridden and finally the thrid and fourth month she was in the hospital for 67 days and numerous Dr.'s told me that it was just a matter of days. Her everything was failing. My sister and I both offered a kidney but they refused basically saying that she was NOT worthy because she had abused drugs. I'm so tired of people telling me that there's nothing that can be done. I'm not in deniel, I can accept death and I'm not scared of it but I know that death is not the only answer at this point. There are millions of people living with HIV and at one point in time was told that they only had a few years-months-weeks-or even days but they are still alive. I just need to be pointed in the right direction to someone who can help me save my mom. She is really young and strong. No one in the hospital can believe that she walked out of the hospital. I know this is not the end. If I were rich would it be the end? Perhasp if my skin was not dark it would not be the end?  >:(

Offline aztecan

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  • 32 years positive, 60 years a pain in the butt
Re: IS she really going to DIE?
« Reply #1 on: July 29, 2006, 11:22:49 AM »
Hey MrsJosey,

I am no doctor, but I can say I have seen people make amazing turnarounds and come back almost literally from the grave.

There are several things that may be going on here. If her HIV were untreated all these years, it is quite possible she has zip immune system left. Also, her drug use may have masked other things going on with her body that may now have progressed.

Who is treating her? It is an internal medicine doc who specializes in HIV? If not, get her to one. I don't know here you live, but there should be an AIDS Service Orgainzation in your area that may be able to steer you in the right direction regarding this.

Second, you mention you mom used drugs for many years. If she used needles, she should be checked at once for Hep C. This is very important because the combination of HIV meds and Hep C on the liver can be lethal depending on the status of the Hep C.

Most of all though, let her know you are there for her and will be there for her. That is something that can cause a person to want to continue to fight.

I, for one, rarely give up on anyone, regardless of their current medical state. I have seen too many people turn around and make a comeback.

I have also seen the opposite.

I wish I could be more help. I'm sure there are others here who will offer advice, probably better than mine.

Hang in there and keep us posted on how things are going.



"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline kcmetroman

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Re: IS she really going to DIE?
« Reply #2 on: July 29, 2006, 11:28:29 AM »
Dear Jozy,

Speaking as one that did come back from the grave....It can be done, but she needs authoritative medical care.  Mark is right on in his post...

Good luck, and I will be praying for the two of you....

Offline Andy Velez

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Re: IS she really going to DIE?
« Reply #3 on: July 29, 2006, 11:41:27 AM »
Jozy, what comes across loud and clear in what you have written is your own strength and the depth of your caring for your Mom. It's powerful to get that message from you.

Whose care is she under now? Is it someone you feel you can work with to get her the care she needs? Is there a social worker or other professional you can turn to for help with her medical care?

Thinking of you and praying for all of you.

Andy Velez

Offline Christine

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Re: IS she really going to DIE?
« Reply #4 on: July 29, 2006, 12:42:03 PM »
Hi Jozy,
Is there an Aids Service Organization in your area? Can you get in touch with a social worker? Is she being seen by an hiv specialist? Is she getting support for her addiction? NA or AA. Has she been placed on meds? Does she understand how to take them properly?

It is not unheard of that someone who is very close to the end can turn around and become well again, but proper medical care is needed, and for your Mom, help so she can stay clean. And congratulations to her for taking that step.

Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline mrsjozy

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Re: IS she really going to DIE?
« Reply #5 on: July 30, 2006, 11:22:09 PM »
First I want to thank EVERYONE for the kind word of encouragement, it brought tears to my eyes and and drive to my soul to know that I'm not alone.

My mom will be seeing a HIV Dr. this Tuesday and she has seen this Dr. before but she at one time was told not to take her meds because her CD4 count was 600. Now her CD4 count is 250. Yes there  is a AIDS Service Org in this area it's called the AID FORCE TASK which refer ed her to the Johnathan Lax center where she will be treated.

No she is not receiving treatment for her addiction. I'm almost 110% sure that she's not going to be using anymore, OK, maybe not that sure but I know that it would really hurt me deeply if she did now.

When she was discharged from the hospital last week her kidney Dr. prescribed her Keletra. Isn't that a med for her HIV? It's in liquid form and comes in two separate bottles.

Every since my mom came home from the hospital she's been really different. I think that this has taken more of an effect on her mentally then ever. She's afraid to be alone at all times. She's always so quiet, thinking I guess. I know that my mom is physically strong enough to over come this but I don't think she's mentally strong enough. Is there someone who can help her with this? I mean, I know there's social workers who are specially trained to deal with situations like this but really...what do they know? They see hundreds of people a day most of their answers are scripted. I know, I went to school to be a psychologist at one point. I think that in order to give advice on certain situations you should know a little more than what you read in a book, but that's just me.

Also, she has began to waste. Does anyone know of a good nutritionist diet? I know that the Dr. will prescribe her one but I always like to know what people in the same situation are doing. 

Aztecan, yes my mother has Hep C. and I'm looking into treatments for that. I have a cousin who also has hep C and was treated with some sort of chemotherapy and it was reversed.

You know, I don't want to turn this into politics or anything but does anyone believe that there's not cure. I mean, we can put a man on the damn moon how many times? Have the best technology in the world that eliminates the complete use of simple things like picking up the phone and dialing the number. We can make babies with out having intercourse. We can even pick the sex of our child..but all of this comes at a very pricey cost. How many people lives will have to be sacrificed before the the government realizes that money is not everything. But just as I type this I'm thinking that... Yes, money is everything to the government and it does make the world go round. If it weren't then we wouldn't be at war while the president denies that we are but can't explain why hundred of people are being killed. WOW human life doesn't even stand a chance in this world if theres no money being made.

Offline Denver Toad

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Re: IS she really going to DIE?
« Reply #6 on: July 30, 2006, 11:33:39 PM »
I truly hope that your Mom will be okay. Plenty of hurdles ahead. When I went on HAART my VL was +600K, and CD4 was 50. Little over a year later I'm undectable, and was at 186 for CD4. With a good Dr., adherance to her meds, and getting clean Mom has as good a shot as any. It's amazing what we can do to our bodies and recover from. I hope that someone will guide her to a 12 step program to assist her in recovery. People can and do recover from their addictions. All my best wishes, thoughts, and a prayer for the both of you tonight. Stout heart young lady, come back as often as you need for a shoulder to lean on.
Life is short, Break the rules, Forgive quickly,
Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Offline otherplaces

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Re: IS she really going to DIE?
« Reply #7 on: July 31, 2006, 02:36:40 AM »


I found your posts about your mom very touching.  Your love for her is very strong.  I think everyone here has a deep understanding that the world isn't fair.  But if you look around at some of the people in the forums you'll see warriors who fought the fight against the odds and are still standing.  Understanding this I see no reason not to have hope. 

With your mother's t-cell count at 250 there is no reason she shouldn't be able to receive treatment for her HIV and bounce back.  I can't speak to her other medical conditions.  I believe that if she has a good doctor, and stays clean there is nothing but hope.

You are in my thoughts.

much love,

Offline DanielMark

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Re: IS she really going to DIE?
« Reply #8 on: July 31, 2006, 05:34:54 AM »
Hi Jozy,

Your mom's state of mind is not surprising to me, a former alcohol and drug abuser.

As far as help with her mental state, surely she could be referred to help with that through the hospital. They have the resources, and my guess would be that they will offer them. If not, it never hurts to request. If not from there, then an AIDS service org.

Praying that you and your mom will get through this troubling time, and I commend you for your dedication in a difficult situation.




Offline Christine

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Re: IS she really going to DIE?
« Reply #9 on: July 31, 2006, 11:27:01 AM »
Hi Jozy,
Can you go with your Mom to her next doctor's appointment? Would she be comfortable with you going with her? If not, then you can write down a list of questions and concerns that she can discuss with her doctor.

I can tell you my experiences, in regards to seeing a nutritionist, I am able to see one through my doctor. Ask at the next appointment, or ask the ASO. Can your Mom cook for herself? If not, she might qualify for a meals-on-wheels, or other help. Ask the ASO. Eating small nutritious meals throughout the day will help.

I would suggest talking to your Mom about going for help in both dealing with her addiction, and the hiv. Finding a psychiatrist or psychologist is sometimes hit or miss. Just like everything there are good ones, and bad ones. Again talk to her doctor and the ASO, I am pretty sure they will be able to recommend someone who can help.

I see a therapist who works with chronically ill people. She is not ill herself, but has worked for years in oncology, and understands the needs of someone who has a chronic illness.

Also, it is important for you to take care of yourself. Are there other family members or friends who can help care for your Mom? Have you ever thought about going to something like Al-anon? A support group for people who have family or friends who are addicts.

It is going to be hard for both of you in the beginning. And feeling overwhelmed is pretty normal. Try to take one day at a time, and ask for help when you need it. Use your local ASO, find support groups, ask for help from the doctor. Take advantage of everything there is. Don't try and do everything yourself.

And post here when you need help. We will be there for you.
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline mrsjozy

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Re: IS she really going to DIE?
« Reply #10 on: July 31, 2006, 03:12:58 PM »
I never knew such caring people existed...thanks

My mom has a Dr. apt on the 2ND and I will be there. Yes, I have been dealing with this all by myself. It wasn't until just recently did my aunts and sister get involved but that was because I was so overwhelmed that I could not even get out of the bed to care for my 18mon. son. My husband was so upset that my family had left me to care for this all alone but I had always been taking care of everyone else. My husband changed out home number and made me take the time for myself that I needed. If felt so guilty and my family didn't help either. They don't understand that I get tired too. I have to work and be a husband and mom and aunt, friend, daughter, and everything else too. They don't realize that I'm not GOD and I don't have the answer to everything even though I pretend to but what am I supposed to do? Cry, and boo hoo like everyone else? There's enough people in my family doing that for me and I don't want to upset my mom.
She can tell when things ain't right with me and I can't just lie and say that everthings alright when it's not. When everyone else is saying that things are fine, I'm the one to say: look mom things are not looking good. I need you to get your act together and stay strong. I tell her that it's not the end. I'll know when it's the end and I've promised her that I will be the first to let her know.

Can someone tell me what the VL is? And how important it is? When I asked the Dr.what hers was he said it wasn't important and that her CD4 count was 250. He's only the kidney Dr. though.

I'm going to re post this question because I haven't gotten an answer, can someone help me?

When she was discharged from the hospital last week her kidney Dr. prescribed her Keletra. Isn't that a med for her HIV? It's in liquid form and comes in two separate bottles


Offline Christine

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Re: IS she really going to DIE?
« Reply #11 on: July 31, 2006, 04:08:49 PM »
If the drug is Kaletra, here is info on it: http://www.aidsmeds.com/drugs/Kaletra.htm

I am not familiar with the liquid form. Usually it is combined with other meds to form a cocktail or HAART therapy. My opinion, I would defiantly talk to the ID doctor about this. It is pretty important that your Mom has a hiv specialist to manage her meds. The appropriate medications can be fairly complicated to manage, and you need someone who understands them completely to get the best care.

Another thing that I do is designate my ID doctor (hiv Dr) as my primary care doctor. Basically that means that anything that any other doctor does, any meds that are dispensed, goes through my ID doctor. It helps to keep my treatment more organized.

The VL is the viral load. That is the amount of hiv virus in the body. The goal is to have the lowest vl possible. The VL amount is pretty important. It is used as an indicator to how the meds are working. Here is info on the vl:

The lessons section on Aidsmeds is really excellent. It is easy to understand, and very helpful.

I agree with your husband. You do need to care for yourself. Have you asked directly your other family members for help? Such as- Mom needs help on Friday with cleaning and making lunch. Can you be there between 10-2pm?

I think it is okay to be honest with your Mom. You acknowledged that she is not in a great place right now, but with some work, and dedication on her part, that can absolutely change. And you can not do everything yourself. You will burn yourself out. Start asking for help from your family, ASO, friends, your church.

I am a lot like you. I try to do everything, and fix everyone's problems too. But I have learned to start asking for help. It was weird at first, but when I asked, people responded. Your Mom is very lucky to have you.

Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline sdcabincrew74

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Re: IS she really going to DIE?
« Reply #12 on: August 01, 2006, 01:57:00 AM »
Hmmm, good question.  I had 1.5 feet in the grave.  I had PCP, MAC a CD4 of 22 and a Vl that was "off the charts".  1.5 years later I am here and doing well.  I have a job and live and love like any normal person.  It takes the will to live and the will to get better to do that.  Plus these lovely pills I take are amazing.  Some people do not bounce back as quickly but I imagine that she too can live.
The difference between an overnight and a layover is luck!


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