Thursday, August 4, 2011

Ten suggestions, tips, and encouragement for someone newly diagnosed with HIV/AIDS

In light of the news lately that 3 out of 4 people diagnosed with HIV are not in care, or flipping that statistic this means ONLY 1 in 4 people diagnosed with HIV are receiving care.  Starting to treat your HIV is not only important to stop the replication of the virus in your system before being diagnosed with AIDS, it's also important so that you are less likely to spread the virus to others.  Given these reports I feel it is neccessary to re-visit this blog entry.

So, you just found out you are HIV positive. What do you do now?  It can be a very scary time, and you will undoubtedly have MANY questions.  The diagnosis may have caught you completely off guard, or maybe you have subcommand to the possibility, and already have been emotionally preparing for this day.  In either case, don’t beat yourself up.  Try to stay calm and rational. Don’t put the horse in front of the carriage! Don’t hide away ashamed of your status, and go untreated.  

It’s important to take a proactive approach from day one of your diagnosis.  If you’ve been traveling down a self-destructive path, now is a good time to reflect and begin working towards a neutral and upward path in life.  Your life is not over with HIV.  With today’s medicine you can live to be a ripe old age. Life happens, and sometimes bad things happen to good people.  
There are certain steps you need to take to begin addressing your HIV/AIDS diagnosis. I’ve listed my recommendations as well as some tips below.   I did all of this on my own, but now realize how important it is to work with a case manager.  Case managers are invaluable assets to those of us living with HIV/AIDS.  They can offer you guidance, especially in the early days of your diagnosis. 
1)      Find an ASO (AIDS Services Organization)
From here you will be set up with a case manager who will assess your needs and address any concerns or questions you may have about your new diagnosis.  To assist in this process I suggest to Google your closest ASO (AIDS service organization). The case workers at these federal and state funded organizations WILL be invaluable to you in your early days of your diagnosis, and will support you for as long as you need them too.  When you enter these organizations you are treated with dignity and respect, and will be pointed in the direction of invaluable resources. 
2)      Find a doctor
Your case manager at the ASO can recommend an infectious disease doctor or a doctor whose credentials state they are an HIV specialist.  You may even know a friend or two with HIV; ask them who their doctor is. Keep your primary care doctor for simple colds and other issues not handled by your “HIV doctor”

3)      Treat underlying conditions 
Have you been struggling with a substance abuse issue? Maybe you have been struggling with an addiction to crystal meth, cocaine, heroin, crack, or alcohol? Your case manager can provide substance abuse referrals, either to an outpatient facility or an inpatient one.  Maybe you have other mental health concerns that need to be addressed?  This could be a good time to address these too.

4)      Seek support  
You will need the support now more than ever from close friends and family. You may even want to seek the help of a talk therapist (psychologist).  Again, your case manager can recommend experienced psychologists in your area. If you are uncomfortable going to your friends and family for support.  Also look to the right of this blog for supportive resources. Your case manager can also link you up with support groups in your area. It’s important to stay connected with other individuals who understand, whove been there and can offer you advice. Join for incredible online social support, and search for groups on facebook to join, such as the International Place for people with HIV/AIDS, and the people who love us. Also join my facebook page and twitter account you can find at the bottom of this page that will also point you in the direction of more resources.

5)      Check work benefits
If you’re working and work in the United States your company is required to have an FMLA (Family Medical Leave Act) policy. This is a federal act that gives you time off to take care of yourself or a loved one.  Some companies will pay you while on FMLA, some don’t.  Check out your companies leave policy, find out how much sick, and vacation time you've accrued.  Having these benefits can be a great safety net and give you time to deal with your diagnosis, especially when first diagnosed, and to get to subsequent medical appointments.
6)    Starting Meds 
Consider beginning medicine to treat your HIV; check out the latest medicine guide to familiarize yourself with the medications to treat HIV.  Starting meds is a personal choice; and should be a team decision between yourself and your doctor.  As part of your intial labs your doctor will run a lab profile to see if your immune to any of the current medications. The most common side effects people report in the beggining are fatigue, and insomnia, and sometime vivid dreams, depending on the medicine you and your doctor choose Thankfully medications to treat HIV have evolved, and are not as harsh on the body as they used to be.  

7)    Paying for HIV Medication 
If you have NO insurance, or inadequate insurance your case manager can help sign you up for programs that can help with the high cost of your HIV medications. One such program is ADAP (AIDS Drug Assistance Program) or PAPs (Patient Assistance Programs).  Depending on your eligibility you may be able to have your HIV meds paid for fully. In other instances where you do not qualify for ADAP or PAPs , but have private insurance their are ways to help with whatever co-pays you may incur or yearly insurance spend downs you need to meet. Click here for resources to help with insurance spend downs,  such as co-pay assistance programs administered through the drug companies. It's no secret that HIV medication is very expensive, and if diagnosed in January-March, and do not qualify for ADAP you will be faced with the full amount of your spend down.  This happened to me when I was first diagnosed!

8)     Ask questions and Follow up
Write down your questions before your visit. List the most important ones first to make sure they get asked and answered. Follow up with all of your lab work. Ask for copies and keep them in an organized folder. This way you can compare numbers from last visits. Don't assume if something is wrong, your doctor will tell you. While your doctor will stay on top of your health, again it's important to be an active participant and advocate for your own health.  Tip:  Ask if your doctor has an e mail that you can send questions to when they arise. Another tip: Nowadays your medical office may be set up electronically, whereby you create a user name and password and will be able to log into your medical records and see all your test results.

9)    Tell your doctor everything
It’s important to tell your doctor everything.  Even if it makes you feel embarrassed or uncomfortable.  The single most important way you can stay healthy is to be an active participant in your own health. Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care, and have better results!

10)   Get involved and stay connected
By now, you have come a long way, and all of the above info you can pass along. For those reading this, and who have been in care for a while, you probably think this post is overwhelming.  When I re-read it I think how time consuming the process was, but that it eventually became just that, a process. A coordinate processs that you will become accustomed to.

Once you’ve come to terms with your diagnosis you may want to share your story, so that others who have been through what you have gone through can relate and find some comfort.  You can do this by beginning a blog, writing a guest blog entry on someone else’s website,  speaking at schools and other speaking engagements, advocating, or just simply connecting with others online and offline.  Just telling someone who has been newly diagnosed, that you are not alone, can go a long way!
Remember your life is not over with HIV.  After some time you will find that everything mentioned above will fall into place, and will become routine. While HIV is NOT a death sentence like it once used to be, it is a LIFE sentence.   HIV is now considered a manageable disease that you’ll hear relatable to diabetes.  Every 3-6 months you’ll need to see your doctor and have lab work done.  You’ll need to take your medications morning and/or night and try not to miss a dose. Many have found a “new life” after being diagnosed with HIV.  You are not a lone, and WILL be ok!
Remember, your still Human, LOVEABLE, and WORTH IT.  Never give up HOPE.
Your friend LIVING with HIV, (cured hepatitis c nov 15th, 2010)
Please feel free to reach out to me and I will help as much as I can!! 

Be well my friend,  
Kevin Maloney
My Story

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