Saturday, December 25, 2010

Christmas Day 1982; I was 5 years old......



Christmas Day 1982 was a happy day in my life.  I was 5 years old, and my favorite present on this day was my pound puppy, glo worm, and my new bike.  This was also the year I started kindergarten, and I still remember my kindergarten teacher Ms.Cambell and learning my ABC’s via the “Animal People”.
This was also the year I learned to swim, and my Dad taught me how to ride a bike without training wheels. I would play my Atari and Coleco Vision all day, I loved those games frogger and donky kong!  I had one of the hottest hot wheels around, and a huge collection of Garbage Pail Kids and match box cars.
I would play and watch TV all day. I couldn’t get enough of Tom and Jerry, Sesame St, and Mr Rogers.  When it was not my turn to watch TV I would watch MASH with my Father and General Hospital with my Mom. 
I looked forward to sleep overs at my cousins on the weekends, peanut butter and jelly sandwiches, MJ on MTV, Saturday morning bowling with my Mom and Dad, and nearly daily shopping trips to the mall with my Mother.
As a child growing up in the 80’s I was definitely the epitome of a Toy’s R Us Kid.  I was oblivious to what was happening in the big World around me. Aren’t we all at that age?  My Parent’s did a good job at shielding me from all the sorrow and negativity that was going on in the World. All the while, my parents, hoping my future would only know joy and happiness. 
As I was turning 5 and continued growing up in the 80’s; AIDS began to rear its ugly head and spread with vengeance.  By the beginning of July 1982 a total of 452 cases, from 23 states, had been reported to the CDC, and then the disease began spreading Worldwide. Much of the 80’s was spent figuring out this disease and how best to treat it and In the 90’s came the dreaded AZT treatments.

By January 1st 1995, a cumulative total of a million cases of AIDS had been reported to the World Health Organization Global Programme on AIDS. Eighteen million adults and 1.5 million children were estimated to have been infected with HIV since the beginning of the epidemic. Later in the month the CDC announced that in the US, AIDS had become the leading cause of death amongst all Americans aged 25 to 44.

28 years later the disease is still rearing its ugly head with approximately 56,000 Americans becoming infected with HIV each year. That equivilates to one person in the United States becoming newly infected with HIV every 9 1/2 minutes. Through 2007, more than 576,000 people with AIDS in the US have died since the epidemic began

Globally, since the first cases of AIDS were reported in 1981, infection of HIV has grown to pandemic proportions, resulting in an estimated 65 million infections and 25 million deaths. During 2005 alone, an estimated 2.8 million persons died from AIDS, 4.1 million were newly infected with HIV, and 38.6 million were living with HIV.
With the advent of new drugs scientists have been able to suppress new infections to a point where the disease becomes undetectable.  And Scientists have been able to identify reservoirs in our bodies where latent HIV hides and where current medicine cannot get at.  
Researchers throughout the World but particularly right here in the United States are working tirelessly to finally eradicate this illness.  Never have we been as close to a cure as we are now.  In an e mail communication with Dr David Margolis; within the next few years studies will be rolling out in Chapel hill, NC that will be the next step towards the cure.
Until we get to that cure; those of us infected or inflicted by HIV/AIDS across the World must keep fighting, not just for our livelihood, but for upcoming generations to come.  Keep advocating, keep educating yourself and the public, volunteer, have safe sex, keep on top of your health, and donate if you can to AMfar.org.
In closing, I have two wishes this Christmas day. My first wish is that my Mother gets the lung transplant she so desperately needs. Mom you have hung in there for so long, I love you so much and I am glad that you have made it to another Christmas with hopes for many more to come.
My other wish is that we will get closer to finding a cure for HIV/AIDS and that these acronyms will soon be written into history.
Today; to those survivors who have lived with the illness longer than I, and particularly to those who have lived with the virus 20 + years; I will stand in line behind you when the cure arrives; and now, I stand with you.

Sometimess I wish, just for a day, that I was 5 again.
Merry Christmas and may you only know happiness, prosperity and good health in the coming year.


LETS KEEP THE HOPE ALIVE THAT ONE DAY WE WILL LIVE IN A WORLD FREE OF HIV/AIDS

Monday, December 20, 2010

A new treatment for Hepatitis C; Telaprevir

Not entirely a new treatment regiment, but rather new drug in the arsenal in the fight against Hepatitis C. You will still need to take your ribavirin, pegylated interferon, AND Telaprevir.

In general adding this new drug makes one's cure rate of HEP C genotype 1/1a much better, and can cut treatment time in half. If you would like to read more info about this new drug I have gathered some online resources for you.

an excerpt from the NY Times Article  “If you can promise them six months with a reasonable chance of a cure, that’s a meaningful advance,” said Dr. Scott L. Friedman, chief of the division of liver diseases at the Mount Sinai School of Medicine in New York.

Sunday, December 19, 2010

Say Hi to me

I am your Brother.  I am your Daughter. I am your Friend. I am your Neighbor. I am your Colleague. I am your Classmate. I am your lover.  I am your Cousin.  I am your Son
I am your Teacher.  I am a news anchor. I am a Firefighter. I am Police Officer. I am an Actor.  I am a politician. I am your Priest. I am a Doctor. I saved your life.  I serve in the Military. I change the oil in your car.  I handle your groceries when you check out in my line. I am the homeless guy you pass on the street.

We stood in line together.  Our children go to school together.  I was in the car beside you today.  That was me sitting next to you.  I go to school with you.  My hand brushed against yours on the subway.  We drink from the same water fountain, swim in the same pool, and congregate in the same areas.  

Why don't you say hi to me?
I am gay and you may not be, I have HIV and you may not, I have Hepatitis C and you may not have that either. I am shy and you may not be.  You may not have or be a lot of the things I am or have, but I am still your Neighbor, still your Brother, Colleague, Classmate, and your Son.  And as long as I am here; I am somebody. 


Say Hi to me J
-          Kevin M

Dad, I’m Gay, HIV and Hepatitis C Positive.

Oh, and Dad, by the way, I have an addition to Crystal Meth and I am in rehab for it (May 2010).  That is exactly how I came out to my Dad over the telephone.  
It was not until my Father’s girlfriend told me of that night when she was there when my Dad received my phone call that I thought “how dumb it was of me” to disclose all that over the phone.
When my Dad hung up the phone, he broke down.  And, for the first time in his life; he cried, thinking that I was going to die.
My family picked up on the “gay thing” early on, but HIV, Hepatitis C and Crystal Methamphetamine.  Kevin?  I was a good kid that grew up as a shy and quiet child, and who traveled the World from a young age.  I was a kid who made his Parents very proud.
If your parents are of my parent’s age’s (baby boomers), then they grew up with a very different image surrounding HIV,  they may be more understanding of the substance abuse issue, but the acronym GRID and AIDS still sticks with this generation today.  
Until last year, even after all of these years of being gay, and being familiar with HIV – I never heard this term.  GRID (Gay Related Immune Disorder) was the first term used back in 1982 to define what we now call today HIV/AIDS.  If you think about it, those of us with parents as baby boomers; they were our age when AIDS reared its ugly head.
What a long way we have come since then, but the images, the science, the stigma associated with AIDS back then still sticks with many baby boomers today.
It was a different experience when I told my Brother and his wife (10 years older than I am).  They were much more accepting, and understanding.
In hindsight I wish I had that day to do over again with my Father. I would speak to him in person, so that he can see me and see that I do not look sick,  and that I am not dying. I would educate him as to my Illnesses, give him reading material, and assure him that I will go on living a healthy and fulfilling life. And that HIV is not the GRID/AIDS he remembered it being.
My generation has become so digitalized and depersonalized as we text our breakups, propose via instant messenger, and divulge such personal and sensitive health information over the phone, rather than in person.  The traditional days of yesteryear sitting around a dinner table and conversing have long been gone.  I am waiting for APPLE to design the I DINNER TABLE.   
Point in this blog entry is; lesson learned.  And when I tell my Mom; this time I will do it the proper way.  I will be telling her after the Holidays and will keep you all posted on how that goes.

Intresting Study from Australia; Post Hep C Recovery

I have been to Australia 3 times - I consider it my second home!
 
This is an interesting study out of Australia regarding Post Hepatitis C recovery
 
 
I am in this category "Feeling renewed from clearing hepatitis C infection". However, I would probably suggest not everyone read this study. It has more negativity than positivity, but nonetheless an interesting study.

Saturday, December 18, 2010

My First Christmas Tree; a Metaphor of Life?

Never in my life have I had my own tree, as I have been a roommate for so long; and away from my family and those instilled familial holiday traditions.  When I come in my front door and see MY tree, or while sitting on my couch looking at it, or peering at it from my desk; my feelings of unsteadiness in my life right now – slip away; and for a moment I have no worries.  I think about nothing else in that moment, but that tree.   
When I first picked up my tree – it was hiding amongst the other trees.  When I pulled it out to look at it the branches weren’t quite right, one side was a bit less full than the other, and it had some gaps.   It had potential though, so I took it home.  Over that afternoon the tree began to thaw, the branches began to fall into place and the gaps starting filling in. I watered it for the first time, and again this morning.  
That tree hiding amongst the others was in obvious distress, it was picked over, and nobody was paying attention to it.  This morning the branches are perky, it’s standing erect, and I can see the life pouring out of that tree.  Could something as simple as a tree, be a metaphor for your life right now?
Are you someone out there who is hiding away from the World? Are you a bit lonely, scared, and unsure of your future?  Don’t be, because you have so much hidden potential.  It’s not too late to go out and get your own tree.  Or maybe this year, you just didn’t feel like lighting your Menorah.  I say take out that Menorah and light it, go get that tree, and put on your favorite holiday music. DO NOT squander another day living under a cloud of doom.
I realize though, that for many of us a tree is beyond our budget this year – it was beyond mine.  But I wasn’t going to let this Christmas slip away without one, as I had been too unhappy for so long.

Friday, December 17, 2010

Wednesday, December 1, 2010

It's World AIDS day and nearly 9 months since my diagnosis....

My Story  - the shorter version. The longer video version can be found at the end....

On March 3rd, 2010 I learned that I was HIV + and the next month with follow up labs that I had also contracted Hepatitis C. 
On the day I walked out of my physician’s office in NYC learning of my HIV diagnosis; I was frightened. I didn’t know where to turn; I had nobody on a peer to peer level to talk to about my new diagnosis, and I was upset with myself and at the World around me.  It was a tumultuous time in my life, because at the same time of learning of my diagnosis I was also dealing with a substance abuse issue.
I was at a stalemate in my life, and the dual diagnosis crippled me more emotionally than physically. So, on March 3rd, 2010 I began to set in motion the steps I needed to take to get my life back on track. I immediately took a leave of absence from my job of  7 years with American Express to address my substance abuse issue, to address my HIV and Hepatitis status, and to really examine myself, my life, my job, and those around me. 
I self-admitted for 32 days (inpatient) to the Pride Institute in Minnesota. In this caring environment I was able to come to grips with my co-infection, learn about my substance abuse issue and further set in motion the needed steps to get my life in order.
On March 3rd, 2010 and throughout my stay at the Pride Institute I began what would be nearly a year long journey “designing the rest of my life as best as I can” and decided that “I was not going to squander my life living under a cloud of impending doom” (quotes from the inspirational piece called “The Awakening” – by Sonny Carroll). This inspirational piece that I first read at the Pride Institute profoundly spoke to me, and inspired me to set in motion the rest of my life.
Since moving to NYC I kept questioning if it was the right move and whether my career would take me in the direction I wanted to go.  In the end, I decided NYC was not the right move, and my career was not taking me in the direction I wanted to go in, nor what I was doing the right fit for me.  In September 2010, After 7 years working for American Express, I resigned my position.
My higher power had a greater mission in store for me.  That mission was to move closer to my Family, and especially my ill Mother awaiting a lung transplant, to go to Graduate school for my Master’s Degree in Public Health, and to help those newly diagnosed with HIV or Hepatitis C, and dealing with a substance abuse issue; who are frightened, not knowing where to turn, advocate on their behalf, and create a greater awareness and understanding of HIV and Hepatitis C. 
My experience above and the strength I found within me to overcome my addiction, and deal with my dual diagnosis inspired me to create my own foundation....

The details on this Non Profit Foundation will be out soon.........

The longer video version of my story can be found on you tube:
http://www.youtube.com/watch?v=2jJpyqs_NGw

Friday, November 26, 2010

Dr Fauci's HIV prevention strategy is just outright ridiculous

Researchers found that the daily antiretroviral pill Truvada helped protect healthy gay men from contracting HIV. Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, talks about this groundbreaking development in the fight against AIDS.
AIDS researchers and activists celebrated this week after news that a daily pill can do a lot to prevent HIV-AIDS. A study published in the New England Journal of Medicine reported that healthy gay men who took an antiretroviral pill called Truvada were up to 73 percent less likely to become infected than those who took a placebo.

First: Who can afford this drug? I take Truvada/Isenstress, but I have HIV and have insursance. At retail the drug costs about 2000.00 per month.  Dr Fauci was on CNN recently saying it costs only about 1,000.00 retail.  Even still, at either cost, will insurance approve this as a preventative medicine? If not - who can afford 14,000-28,000 a year - not the most at risk MSM.

This is an out right slap in the face to the grass roots organizations, local, state, and other federally funded efforts out there who work hard, and tirelessly everyday to prevent this disease.

This is not an effective preventative measure in the fight against HIV. I believe it will lead to more promiscuity amongst the MSM population, knowing they have this added protection.  And if given out through local clinics for free or through other health care providers - who's paying for it? We are, the tax payers.  Let's stick to traditional methods, such as education, awareness, condoms, and abstinence. 

Let's make our focus and use our $$$$ towards work on finding a vaccine and a cure! Follow the work of Dr David Margolis.

Thursday, November 25, 2010

A synopsis of my Hepatitis C treatment

Currently, unlike HIV, Hepatitis C can be cured.  However it is important to note that not everyone learning of a Hep C diagnosis will be cured. If caught early (within the first 6 months) enough and depending on your Hep C genotype; cure rates will vary.

Ok, so I learned of my co infection in March 2010 and was devastated. However, I began ART (Anti Retroviral Therapy) right away for my HIV and went from a VL of 1,000,000 to undetectable within 5 weeks.  Once my HIV was under control I began on Pegasus Interferon, and Ribavirn for the Hepatitis C.  My Hep C VL load began at 7,000,000 and went to undetectable at week 6.

The Pegasus is a shot I was giving myself weekly for the past 6 months, along with taking 1200 mg (6 pills) of Ribavirin. I remember the doctor doing the first shot, and after that I was on my own.

The shots of Pegasus are easy to do and do not hurt a bit - you learn the trick of where in the stomach and how to stick yourself.  The pills are the worse.  In the beggining I was taking them as prescribed by the manufacture. 3 pills in the morning and 3 pills at night.

However, I was having a hard time sleeping. I noticed after taking my night pills and then lying down my heart would race. I consulted my doctor and he advised to take all pills at once in the morning.  That helped with my racing heart, but I still had trouble sleeping.

For the first 3 months - these were my only symptoms, along with anxiety. Once I began approaching the 3 month mark I was having more sleeplessness, a surpressed appetite, and INCREASED anxiety.  So much so where I had to be on up to 3 mg of klonipan a day to control the Anxiety.

The clonipen helped tremendously and there would be no way I could have finished treatment without it.  In the beginning my doctor wrote me a script for 500 mg of naproxen (aleve) to take as needed. I NEVER took a pill. If anything, I took one aleve, sometimes two - on the rare occasion I would get a headache, but was it related to the HEP C treatment? Hard to say.

The one thing I did experience in the last couple months of treatment was an overall since of achenes, and at times when this was bad; I would take the aleve, to alleviate the symptom.

In the end I lost about 25 (needed) pounds. I didn't lose any hair, well no more than I had already lost and no scarring from the shots in my stomach. I also could have never completed my treatment if it was not for the CONSTANT e mail communication between my doctor and I. Anytime I had a question, a symptom, a prescription problem - I would e mail him and he would reply back right away. He stayed on top of my health as did I.

If you live in the NYC area and have been recently diagnosed with Hepatitis C then I would recommend Dr Daniel S Fierer with Mount Sinai Hospital. Should you have further questions, regarding Hepatitis C, feel free to e mail me or post a comment.

Wednesday, November 24, 2010

When is the last time you had a Hepatitis C test?

)If you are HIV Negative, do you know your HEP C status?

Hep C is not only prevelent amongst IV drug users. It is actually more common in non IV Drug users. And especially amongst MSM (Men who have sex with Men). HEP C amongst MSM has become a Worldwide epidemic.

If you are going for your free standard HIV Test, are they also testing you for HEP C?
It's possible to have HEP C and not HIV and vice versa. Ask your doctor or the clinic you go to for a HEP C test.

Also, pay attention to your liver function tests which are usually done with yearly physicals or anytime you have a CMP (complete metabolic panel).  If your ALT and AST number are elevated - it COULD be an indicator of Hep C.

You can get vaccinated against Hep A & B , but no vaccination exists for Hepatitis C. Hepatitis C can lead to serious liver damage, especially if you are co-infected with HIV.

You can listen to my Doctor Dr Daniel Fierer with Mount Sinai Hospital in New York as he spoke at the 2009 International Hepatitis C conference.

Dr Daniel Fierer Speaking at an International Hepatitis C conference in 2009 (Part 1)


Dr Daniel Fierer Speaking at an international Hepatitis C conference in 2009 (Part 2)

Dr Daniel Fierer Speaking at an International Hepatitis C conference in 2009 (Part 3)

Friday, November 19, 2010

A letter to Kohl's Headquarters regarding my Mom

Corporate Headquarters
Kohl's Department Stores
N56

W17000 Ridgewood Drive
Menomonee Falls, WI 53051
November 19th, 2010

Dear Kohl’s,

I am writing to you with the encouragement of Tom Archer, President of the Second Wind Lung Transplant Association, Inc.

My Mom:
For as long as she has been able, she has always been one to be on the go from sun up to sun down, running errands, working, and shopping until she dropped.  I remember when my mom could shop all day and still have breath in her at the end of the day.  Now, with her illness, it’s hard to make it even out her front door without becoming breathless. 

Throughout her illness, shopping and getting her hair done weekly and going out to dinner once in a while have become her enjoyments in life.  When she takes her last breath, it will be either in Kohl’s (store number  or at Zen’s Hair Salon.  Well, that’s if she could have it her way. 

Up until recently she has been able to use the walking carts to get around, but her disease has progressed to a point where she now needs a wheel chair to shop. She is currently undergoing pre-lung transplant testing and my family hopes that she is placed on the transplant list and gets the lung she needs to shop until she can drop again.

On a recent shopping outing we ran into a problem with the wheelchairs Kohl’s has on hand.  The back of the chairs are missing simple “O rings” to be able to hold oxygen tanks.

As you see from the pictures that I am sending you, it was an uncomfortable shopping experience for my Mom and her trip to your store diminished her keenness to ever shop again.   As a caregiver I want to make my mother’s shopping experience as comfortable as possible for her.

I have a simple request. Would Kohl’s be willing to fit its wheelchairs with simple O ring to be able to hold oxygen tanks, and maybe even a long metal arm extending upward from the wheel chair to hang clothes on as we shop?  I do appreciate that you have chairs on hand for those that need them.  I hope Kohl’s can make these simple modifications to the chairs on hand.

I am writing this letter on behalf of all of those with COPD and other lung diseases that require the use of oxygen, and for their care givers.

Below are some statistics on COPD from the American Lung Association:

·         COPD, or chronic obstructive pulmonary disease, is a progressive disease that makes it hard to breathe. "Progressive" means the disease gets worse over time.
·         Cigarette smoking is the leading cause of COPD. Most people who have COPD smoke or used to smoke. Long-term exposure to other lung irritants, such as air pollution, chemical fumes, or dust, also may contribute to COPD.
·         COPD is a major cause of disability, and it's the fourth leading cause of death in the United States.
·         61,000 women and 57,260 men died of the disease in 2004; about 12 million adults in the U.S. have COPD.
·         COPD develops slowly. Symptoms often worsen over time and can limit one’s ability to do routine activities. Severe COPD may prevent one (such as my Mom) from doing even basic activities like walking, cooking, or taking care of oneself, and shopping!!
·         Most of the time, COPD is diagnosed in middle-aged or older people.

"COPD is a huge problem in women," says MeiLan Han, MD, MS, an assistant professor of medicine at the University of Michigan Health System, Ann Arbor, and director of its Women's Respiratory Health Clinic.

She is the lead author of a clinical commentary on the topic of gender and COPD published in the American Journal of Respiratory and Critical Care Medicine.

COPD in women has been on the rise in recent years. More women than men in the U.S. now die from it each year, she says.
I appreciate you taking the time to read my letter, and meet my Mother, and I look forward to your response.  Thank You!

Sincerely,

Kevin Maloney





Kohl's Responds to my letter

The power of positive affirmations

The Power of Affirmations
By Remez Sasson

Affirmations are positive statements that describe a desired situation, and which are repeated many times, in order to impress the subconscious mind and trigger it into positive action. In order to ensure the effectiveness of the affirmations, they have to be repeated with attention, conviction, interest and desire.

Imagine that you are swimming with your friends in a swimming pool. They swim fifteen rounds, something you have never done before, and desiring to win the respect of your friends, you want to show them that you can make it too. You start swimming, and at the same time keep repeating in your mind, "I can do it, I can do it...". You keep thinking and believing that you are going to complete the fifteen rounds. What are you actually doing? You are repeating positive affirmations.

More than often, people repeat in their minds negative words and statements concerning the situations and events in their lives, and consequently bring upon themselves undesirable situations. Words and statements work both ways, to build or destroy. It is the way we use them that determines whether they are going to bring good or harmful results.
Often, people repeat negative statements in their minds, without even being aware of what they are doing. Do you keep thinking and telling yourself that you cannot do something, that you are too lazy, lack inner strength or that you are going to fail? Your subconscious mind accepts as true what you keep saying, and eventually attracts corresponding events and situations into your life, irrespective whether they are good or bad for you, so why not choose only positive statements?

Affirmations program the mind in the same way commands and scripts program a computer. They work in the same manner as creative visualization. The repeated words help you focus your mind on your aim, and automatically build corresponding mental images in the conscious mind, which affect the subconscious mind. The conscious mind, the mind you think with, starts this process, and then the subconscious mind takes charge. By using this process consciously and intently, you can affect your subconscious mind and thereby transform your habits, behavior, mental attitude and reactions, and even reshape your external life.

Sometimes results appear quickly, but often more time is required. Depending on your goal, sometimes you might attain immediate results, and sometimes it might take days, weeks, months or more. Getting results depends on several factors, such as the time, focus, faith and feelings you invest in repeating your affirmations, on the strength of your desire, and on how big or small is your goal.

It is important to understand that repeating positive affirmations for a few minutes, and then thinking negatively the rest of the day, neutralizes the effects of the positive words. You have to refuse thinking negative thoughts, if you wish to attain positive results.

How to Repeat AffirmationsIt is advisable to repeat affirmations that are not too long, as they are easier to remember. Repeat them anytime your mind is not engaged in something in particular, such as while traveling in a bus or a train, waiting in line, walking etc, but do not affirm while driving or crossing a street. You may also repeat them in special sessions of 5-10 minutes each, several times a day.

Relax any physical, emotional or mental tension while affirming. The stronger the concentration, the more faith you have in what you are doing, the more feelings you put into the act, the stronger and faster will be the results.

Choose only positive words, describing what you really want. If you desire to lose weight, do not tell yourself "I am not fat" or "I am losing weight." These are negative statements, bringing into the mind mental images of what you do not want. Say instead, "I am getting slim" or "I have reached my right weight". Such words evoke positive images in the mind.

Always affirm in the present tense, not the future tense. Saying, "I will be rich", means that you intend to be rich one day, in the indefinite future, but not now. It is more effective to say, and also feel, "I am rich now", and the subconscious mind will work overtime to make this happen now, in the present.

The power of affirmations can help you to transform your life. By stating what you want to be true in your life, you mentally and emotionally see and feel it as true, irrespective of your current circumstances, and thereby attract it into your life.

Positive Affirmations- I am healthy and happy
- Wealth is pouring into my life
-I am sailing on the river of wealth
-I am getting wealthier each day
- My body is healthy and functioning in a very good way
- I have a lot of energy
- I study and comprehend fast
- My mind is calm
- I am calm and relaxed in every situation
- My thoughts are under my control
- I radiate love and happiness
- I am surrounded by love
- I have the perfect job for me
- I am living in the house of my dreams
-I have good and loving relations with my wife/husband
- I have a wonderful and satisfying job
- I have the means to travel abroad, whenever I want to
- I am successful in whatever I do
- Everything is getting better every day.

Wednesday, November 17, 2010

The Awakening by Sonny Carrol {inspirational}

This inspirational piece by Sonny Carrol has changed my life. I hope you find some inspiration in it too!



Thursday, October 21, 2010

My Mothers lung transplant evaluation

My Mother has Severe COPD FEV 1. Columbia University called to say they want to expedite her lung transplant evaluation. It begins now. Over the course of the next month she will be having a plethora of tests done locally and many tests we will need to drive to NYC for. These tests will determine if she is a candidate for a lung transplant and it will be discussed when she should be placed on the organ donation list - should she be a viable candidate. Thus far, we have not run into any problems with the tests that have already been done.

We are awaiting a packet in the mail detailing the needed tests and where to have them done.She understands the commitment as well as I.  Pre and post transplant. It's a long road ahead, but I look forward to the day when my mother is able to breath on her own again without 5 liters of continuous flow oxygen.

Did you know they can remove both damaged lung, and transplant one good lung and the survival rate is just the same?  I never knew you could live with just one lung! 

If you are having trouble stopping smoking:

For Teens: Check out the organization Reality Check
Reality Check is a youth-led movement with the goal of exposing the truth about tobacco and the manipulative marketing practices that the tobacco industry uses to target teens. http://realitycheckteens.com

and for anyone visit the American lung association to find services and get help to stop smoking....
http://www.lungusa.org

Tuesday, October 19, 2010

My Story now on You Tube and on my blog

Setting up an account with you tube and broadcasting my story was inspired by Joel Burns who gave an emotional plea about gay bullying that I heard on CNN over the weekend.

See it here...

http://www.youtube.com/watch?v=2jJpyqs_NGw

Saturday, October 16, 2010

8 months into my HIV treatment, 5 months into my Hep C treatment, and what else has been and is happening in my life.

Well, I haven’t been writing much on my blog lately, but I intend to soon. With only one month left of Hep C treatment I am managing and doing very well with both illnesses.  Since finding out in March 2010 I was HIV positive – I started meds right away and have been undetectable since week 4, with NO adverse effects from the Truvada/Isentress combo.  It seems to be doing the trick.  I recently started taking the 2 pills of Isentress at the same time instead of the 2x daily regimen.  The advice to take both at the same time came from my doctor and is becoming windingly prescribed as such. However do not take my advice, ask your doctor about his feelings on this. 
What has been the worst is the Hep C treatment.  In 5 months I have lost nearly 25 pounds and my energy level has been very low. The negative effects of HEP C treatment (for me) have been the psychological ones.  Mainly increased anxiety, decreased concentration, racing thoughts, making rash decisions, with a bunch of sleeplessness and decreased appetite mixed in.  The first 3 months of treatment went fairly well, but after that things seemed to get worse (with regards to the side effects).
I had already been on an SSRI going into treatment (citalopram), but then switched over to Zoloft and was up to 150 mg a day. It helped to alleviate a lot of the symptoms, but the higher dose mixed with 3 mg of klonipen had made my mind mush.  I finally got into see a REALLY good psychiatrist in Fort Lauderdale, FL and today I am feeling MUCH better. I am titrating down from Zoloft at the same time cross titrating to Lexapro (the purer version of the generic citalopram).  Currently I am taking 5mg of Lexapro and 50 mg of Zoloft. Next week I will transition off of Zoloft and will just be on 10 mg of Lexapro.
I am also working with my Psychiatrist to address my sleeplessness and reducing my klonipen usage. The plan we’ve come up with is as follows. I am down to 1.5 mg of klonipen a day now.  I take 1 mg 45 minutes before bedtime, 3mg of lunesta at bedtime and .5 mg of klonipen half way through the day. Eventually, I will come off the klonipen all together, and add a tiny dose of buspar.
I am also taking ALL of my meds in the morning now. Even with the 1200 mg of Ribosphere – instead of taking 3 in the morning and 3 at night (at the advise of my dr), and as noted above I started taking the 2 pills of Isentress in the morning as well.  I have noticed less anxiety (racing heart) at night and better sleep.
One of the rash decisions I have made while on this medicine was the thought t I would move back to Fort Lauderdale, FL and go to school there.  It was not meant to be. I have been accepted into SUNY Albany and will begin classes towards my MPH degree in January 2011. I also plan to work with the AIDS Council of Northeastern NY.  I plan to work with their peer associative program and do community outreach.
What else? I saw my apartment I will be living in.  It will be perfect for me. Right down the street from my Brother and Mom and nearby my Dad as well.  I will also soon be the proud owner of a 2010 Hyundai Accent (2 dr hatch back).  Thanks to my Brother as he is going to co sign the loan for me.
I’ve been looking at couches, beds, and other furniture. I am really looking forward to the end of my HEP C treatment, volunteering for the AIDS Council, school and finally getting on with and making something of my life.
Today – I am filled with hope, optimism, and armed with a ton of knowledge regarding my illness.  My  “new life” post HEP C and managing my HIV is beginning to take shape. Stay tuned for further updates, advocacy work, and a new approach to Health Education and Awareness I have thought of.

Get Involved. Advocate on behalf of erradicating HIV. Early Detection may be key.

From the http://www.amfar.org/ site:

Founded in 1985, amfAR is dedicated to ending the global AIDS epidemic through innovative research. With the freedom and flexibility to respond quickly to emerging areas of scientific promise, amfAR plays a catalytic role in accelerating the pace of HIV/AIDS research and achieving real breakthroughs. amfAR-funded research has increased our understanding of HIV and has helped lay the groundwork for major advances in the study and treatment of HIV/AIDS. Since 1985, amfAR has invested more than $307 million in its mission and has awarded grants to more than 2,000 research teams worldwide.

These days the talk of erradication is becoming louder than the talk of vaccination. Though, I feel both are equally VERY important. For those of us living with HIV we can take away some hope from this website that one day soon we will see a cure for HIV. Dr Margolis and a team of other associated with amfAR have been working tireslessly on this.

In an e mail exchange with Dr David Margolis he suggests early detection/treatment, such as in my case, could be key. See e mail below:

Thanks for your email.
More studies are likely to roll out in Chapel Hill and several other places in the next few years looking to deplete persistent HIV.
These will not cure anyone, but will be a required step towards that.
As you were treated early, we know that you are likely to have a smaller “reservoir” of virus to clear, so I would take care of yourself, watch out for studies to help the field move forward, and perhaps well down the road you will be a candidate for something that will really clear all the virus.

Studies are required to be listed on
clinicaltrials.gov when they are opened.

dm

--
Dr. David Margolis
Professor of Medicine, Microbiology & Immunology, Epidemiology
Director, Program in Translational Clinical Research, IGHID
2060 Genetic Medicine Bldg., CB#7042
120 Mason Farm Rd.
University of North Carolina at Chapel Hill
Chapel Hill, NC 27599-7042

Monday, August 23, 2010

Confidential vs. Anonymous HIV testing; what is the difference, and what does your State allow?



HIV testing may be confidential or anonymous. With confidential testing, a person’s name is recorded with their test result. With anonymous testing, no name is used, and you are identified as a number.  All states offer confidential testing but not all offer anonymous testing. As of April 2008, 11 states offered only confidential testing.   Take a look below to see what your state offers and log onto hivtest.org to find a free testing location nearest you, or GetSTDtested.com 

Alabama C
Alaska C, A
Arizona C, A
Arkansas C, A
California C, A
Colorado C, A
Connecticut C, A
Delaware C, A
District of Columbia C, A
Florida C, A
Georgia C, A
Hawaii C, A
Idaho C
Illinois C, A
Indiana C, A
Iowa C
Kansas C, A
Kentucky C, A
Louisiana C, A
Maine C, A
Maryland C, A
Massachusetts C, A
Michigan C, A
Minnesota C, A
Mississippi C
Missouri C, A
Montana C, A
Nebraska C, A
Nevada C
New Hampshire C, A
New Jersey C, A
New Mexico C, A
New York C, A
North Carolina C
North Dakota C
Ohio C, A
Oklahoma C, A
Oregon C, A
Pennsylvania C, A
Rhode Island C, A
South Carolina C
South Dakota C
Tennessee C
Texas C, A
Utah C, A
Vermont C, A
Virginia C, A
Washington C, A
West Virginia C, A
Wisconsin C, A
Wyoming C, A
American Samoa C, A
Guam C, A
Northern Mariana Islands C, A
Puerto Rico C, A
U.S. Virgin Islands C

A company that partner’s with Quest Diagnostic’s to provide 'at cost' STD Testing

Rather not go through your private insurance to undergo these kinds of private tests?  You do have another option.

 GetSTDtested.com partner’s with quest diagnostic labs all across the country to provide at cost STD testing.  In reviewing their site you choose which package of STD tests you want done.  You simply type in your zip code to find a quest diagnostics lab nearest you.  They have several STD Testing packages to choose from.  Test results are usually back in 1-3 business days.

STD Package 1 test for: Chlamydia, Gonorrhea, Hepatitis B, Hepatitis C, Herpes I, Herpes II, HIV, and Syphilis.  Cost: 245.00
STD Package 2 tests for:  HIV, Gonorrhea, Chlamydia, and Herpes II
Cost: 195.00

My recommended STD test’s for active gay/bisexual men

STD Package 3 tests for: HIV, Syphilis, Hepatitis B, and Hepatitis C
The cost is 195.00, and you just need to choose from the sites individual test options (see below). 
click on image to enlarge

This company has been in business for 15 years, and has been featured on NBC and in the Wall Street Journal.  And through their partnership with the American Social Health Association (ASHA), they have certified expert STD counselors on-call 24 hours a day to help you interpret results and discuss any concerns you may have. No appointment is necessary to speak with a counselor. Also included in your package is a free consult with a doctor, but if the DR prescribes any medicine there are additional charges. 

And they are accredited by the Better Business Bureau with an A- rating (see below).



This is just another option for testing I wanted to make you aware of. Still, my recommendation would be to go to hivtest.org and find a FREE testing location near you.

Sunday, August 22, 2010

6 months into my HIV and Hepatitis C diagnosis and now Unemployed…..


Wow!  What a whirlwind of events that have taken place over the past 6 months.  It all began back on March 3rd, 2010, when I found out I was HIV positive and the following month learned I had also contracted Hepatitis C (non IV user).  As you may have read in my report or previous blog entries for 7 years I led a life of secrecy. I was enveloped in the underground world of drugs and sex that is an unfortunate sub-culture within the LGBTQ community, and what I believe is contributing to a rise in HIV infections with regard to male to male sex.
On March 3rd, I knew I needed to get my life in check.  At the age of 32 – it was finally time to take control of my life and try and figure out what I wanted for myself.   I enrolled in an outpatient rehab program to address my addiction to crystal meth, but outpatient was not enough.   After a month and a half doing outpatient, and having relapsed a few times – I felt I needed more structure.  I received many recommendations from the CMA rooms of New York City about the Pride Institute in Minneapolis, MN.  I called on my own, and within a couple weeks I was there.  I spent 32 days inpatient in Eden Prairie, MN.
During my stay at the Pride Institute the lease where I was living with a roommate ran out, leaving me homeless.  Luckily I had been granted a leave of absence from my employer, American Express, so that my health insurance and pay continued.
For the first time in my life – I was homeless. Though, I was at the Pride Institute being fed, and had a place to sleep.  But, Homeless, at the age of 32 – there was not much pride in this.  Not only was I homeless, I had just learned I was both HIV and Hepatitis C positive, all while learning about an addiction to Crystal Meth – that is what my life had boiled down to.  My head was in a tailspin.  
What would you do? What steps would you take?  Like I said – it was time to get my life in check.  I left Pride with not a place to go to – to call my own.  I was discharged to my Father’s house in Upstate, NY.  It was a place for me to grasp everything that had been happening and continues too, it was a safe place for me.   I began my Hepatitis C treatment when I got here, and have been on it for 3 months now, and I have 3 months of treatment to go, and it will be CURED!
During my time at Pride I went through every emotion possible.  Though, in the end with the help of my peers, counselors, and other staff I emerged stronger, with more knowledge of my addiction, and with more understanding of my illnesses, and with focus and direction I wanted my life to go in.
On August 9th, 2010 my Doctor release me back to work, but my job was in NYC and I didn’t have a home their anymore.  After asking numerous times for employment opportunities within the company in Upstate, NY – in the end American Express did not have a job for me.   They may have had a virtual position, but my Dad was not about to let me work from his home.  This is a temporary move.


 My employer was nice enough to give me a 30 day unpaid leave of absence to find another job within the company, but American Express has no office locations for me in the Upstate, NY area.  Oh – and they just weren’t offering me a position. I was directed onto their website to find and apply for positions.
Was I supposed to wait these 30 days of unpaid leave KNOWING that American Express did not have an opportunity for me where I relocated to?  Or resign?  Both ways would have been processed the same – a voluntary quit.  And, come on American Express knows full well they do not have office locations in the area, and they were even privy to my medical condition.  I feel that a better solution could have been worked out, as they knew WELL in advance my current living and health situation.
So, now the unemployment process begins.  Will I get it, or not. I had to fill out a 4 page questionnaire, and send in tons of supporting documentation. Will American Express challenge my unemployment, and will my case go to a hearing?
For 6 months now my life has been a nervous wreck, with Amex’s 3rd party claims company breathing down my neck every 2 weeks for medical updates, worried about my living situation, worrying about starting the Hep C medicine, worried how the HIV meds and Hep C meds together would interact with me.   Adjusting to my living situation at my Dad’s and worried about my Mom’s health and her upcoming lung transplant evaluation and tests.
I am still not certain where my life is headed.  Hopefully I will have a grasp on everything soon.  Stay tuned and if you have a job for me, send me an e mail!

Letter to All Massachusetts Officials, Re: Online Buddies, Inc.


Dear Governor Deval Patrick,
CC: Massachusetts Department of Health, US State Senator Scott Brown, US State Senator John Kerry, Boston Mayor Thomas Menino, US District Attorney’s Office of Massachusetts

RE: Online Buddies, Inc.

I had faxed/mailed the Governor’s office and both US State Senators a 36 page report detailing a MSM (men who have sex with men) social networking culture and what I feel is a Public Health Crisis that is contributing to a rise in new HIV infections amongst the male to male category.
I am now writing specifically about Online Buddies, Inc., which is incorporated in your State.  They operate a pornographic social networking website called manhunt.net.   This is the BIGGEST and most influential site when it comes to gay/bisexual male” hook-up sites”.  They are the largest producing revenue company amongst MSM social networking sites.  An underground culture of drugs and unsafe sex practices run rampant throughout the site.
What has me the most upset is that there marketing is misleading, and that they have recently begun an aggressive viral campaign teaming up with Facebook, Twitter, and MySpace.  They have also begun offering incentive to members for “liking” them on Facebook.  Through such viral marketing they are targeting the most vulnerable and at risk young adults.  The Better Business Bureau has Online Buddies, Inc. listed as a “dating site”.
I would ask you all to stand with me in denouncing this site and doing ALL you can to prevent another young vulnerable adult from logging into an online social networking culture of drugs and unsafe sex.
Your attention to this matter, and reply would be greatly appreciated.

Letter to all Arizona officials Re: Wet Media, Inc.


Dear Governor Jan Brewer,
CC: Arizona Department of Health Services, US State Senator John McCain, US State Senator John Kyl, Phoenix Mayor Phil Gordon, US Department of Justice Arizona.

RE: Wet Media, Inc
I had faxed/mailed the Governor’s office and both US State Senators a 36 page report detailing a MSM (men who have sex with men) social networking culture and what I feel is a Public Health Crisis that is contributing to a rise in new HIV infections amongst the male to male category.
I am now writing with new information and with regard to a company incorporated in your State.  The company name is Wet Media, Inc.  They operate the pornographic social networking websites barebackrt.com and bbrts.com.  On this site, drugs and unsafe sex practices run rampant.
I would ask you all to stand with me in denouncing this site’s practices and doing ALL you can to prevent a young vulnerable adult from logging into an online social networking culture of drugs and unsafe sex.
Your attention to this matter, and reply would be greatly appreciated.

RiseUpToHIV Daily News Digest