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Talluah822
Unregistered

Is husband full blown?
      #57761 - 02/08/03 01:41 PM

Hello New to this post... Husband was diagnoised HIV in 95'.
ONly sought treatment a short time which included inhibitors (azt)cocktail. He stopped taking meds in 96'. Now has gone back to Dr. and cd4is @37 viral is extremly high. white count 2.7. Wasting seems to be in affect. Can he make a comeback? Ever go back to work? He loves his job and company is very supportive. Are there any support groups in MI.? I was involved with Harc in Ypsilanti before.
I am near Ann Arbor. and feeling preety emotional out here:(
We have family and he's not disclosing to anyone. What do we tell our kids? And when? They are starting to ask if Daddy is going to be alright(?).5 kids. 2 teens 3 under 12. If we collect disabilily through state will they expect us to sell house? If funds are in bank do they seize them?
Is there a good chat room anyone knows of? Thanks for listening and sharing:) Talluah.



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killfoile
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Reged: 12/23/02
Posts: 57
Loc: Fort Lauderdale FL
Re: Is husband full blown? new
      #57763 - 02/08/03 02:43 PM

Dear Talluah822,

What an intensive post. My heart goes out to you and your family and I hope my information can get you started on seeking the support you so desperately need. I tested positive in Detroit and I am very familiar with some of the resources available.

I'll give you general answers and places to contact for further information. Then as you continue this journey, you can either post back here or email me directly if your need further assistance.

I have been pos for 17 years, with my lowest point being in 1994, CD4s were 34, viral load >1,000,000. I've gone through many drugs, but have been on a stable combination now for 2.5 years. Current health, stable, with CD4s of 685 and viral load <150. So I encourage your husband to aggressively treat his infection and he may be able to make a comeback. You mention his company is very supportive, have you checked with Human Resources to see what resources may be available for your husband? Also, you have wonderful hospitals in Ann Arbor, is he seeing anyone there? Also there is Henry Ford Hospital in Detroit, particularly Dr. Norman Markowitz in the Infectious Disease Clinic. I went to that clinic for 13 years and they are the reason that I am here today.

As to support, I have three suggestions. First, try U of M clinical studies department for any support groups in your area. Or try FRIENDS Alliance in Detroit, they keep track of all the support groups for the state of Michigan. Lastly, try Midwest Aids Prevention Project in Ferndale, MI, as they have numerous resources also available.

As to telling your family, only you can make that decision. But let me share my experience and maybe that will help you decide. When I first became positive, my daughter was 3 years old and I was divorced. I was close to Kate, but as my health declined, our visits became less frequent. Her mother and I had agreed not to tell Kate of my situation until necessary. By the time she was 8 years old, that time had come. So we talked with a therapist about the best way to approach it and told her. Believe it or not, she was totally relieved that I was sick. Because from her point of view, since our visits were getting to be less and less, she thought I didn't want to see her. It was a relief to her to hear that it was my health that prevented her from seeing me. Also, children are very smart and very resilient, I doubt that your children are not aware that there is something very wrong with their father. So seek some guidance and possibly tell the teens, you would be amazed how supportive and helpful children can be when called upon.

As to your last questions, about disability, funds in the bank, etc.. Your husband should get a case manager to help him navigate the various programs available to him and your family. Talk to one of those Agencys I listed and they will refer you to someone. But essentially, if he goes on disability, they will not take your money nor expect you to sell your house or your car. So get a case worker and they will be able to guide you and answer most of your questions.

As to your last question regarding chat rooms, I do not know of one, but I bet others in this forum do know of one, so I will leave that answer for someone else.

Feel free to post here whenever you need support, we will all be here waiting for you.

Best of luck to all of you and I will keep you in my thoughts.

Good Health, Joe

If you remember me, through simple acts of kindness, I will live forever.

--------------------
Good Health, Joe

Life is what happens, when you are busy making other plans.

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Anonymous
Unregistered

Re: Is husband full blown? new
      #57766 - 02/08/03 06:18 PM

Realize you are NOT alone. The best thing to do is bring your husband to see a case manager so that you can get the best care and figure out the finances. They know the ins and outs of the social service system and can get you hooked into a lot of services: Just call and ask for an intake interview with a case manager
HARC
3075 Clark Road, Suite 203 
Ypsilanti (800) 578 2300 
(734) 572 9355 

For a really experienced HIV Specialist who can help your husband get the best treatment contact:
UNIVERSITY OF MICHIGAN HIV/AIDS TREATMENT PROGRAM tel 734/763-9227
Department of Internal Medicine

You and your husband can attend a support group: Jackson Support Group First and Third Wednesday
5:30-7:00 pm St. John's United Church of Christ in Jackson
A support group for HIV+ Jackson residents and their family. Call Pat Love, Director of Client Services at HARC for a referral to any support group

You can also call the Michigan AIDS Hotline
(800) 872-2437 they can direct you to services. Just call everyone and ask all your questions till you find the help you need. With the right medications your husband can do really good! Ask about T-20. See an HIV specialist that has at LEAST 10 years treating patients with HIV! ASK. Also this doctor should have more than 50 HIV positive patients. Ask at the AIDS organization for a referral.

Good luck!
Rose



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KiKi
Unregistered

Re: Is husband full blown? new
      #57898 - 02/09/03 09:57 PM

i feel for you. You have plenty have difficult things to do. You should see if you can get together with a therapist to tell your kids...maybe you and your husband can go first. Your husband can live a long life but he has to be proactive and really stick to a treatment. Why did he quite before??? Is he committed to take treatment now?




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Anonymous
Unregistered

Re: Is husband full blown? new
      #57995 - 02/11/03 12:20 AM

HI Talluah: Don't be caught up in definition. Even if your husband is full blown it can be reversed. Just get a good doctor. My heart is with you!



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Anonymous
Unregistered

Re: Is husband full blown? new
      #59488 - 02/26/03 02:05 PM

First: Do not give up hope! When my husband started treatment his CD4 was 3 and his viral load was 300,000. He began treatment in July 2000, now his CD4 is 345 (and steadily rising) and his vl is undetectable. We are involved with the Clinical Trials Unit at Ohio State University and his Doc, Dr. Susan Koletar (a 20 year veteran in the fight), was telling us about a patient of hers who was at a 0 CD4 for 2 years and they finally got the right meds combo and he's doing great. THERE IS ALWAYS HOPE!!!
I recommend telling your kids and family, talk to a counselor about the best way to go about it. Never pass up a chance to expand your support system. All the people who held our hands and helped us cry when things were bad now get to help celebrate when things are good. The worst thing you can do is isolate yourselves. Your husband is no different than someone fighting cancer, diabeties, depression, heart disease and a thousand other health issues that potentially threaten one's life. I know it sounds hokey, but stay positive. A positive attitude and a good ID doctor are your best defense.
Good Luck



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