Monday, March 7, 2011

One year living with HIV and Hepatitis C

Halloween 2010

One year ago on March 3rd I learned that I had become infected with HIV and one month later with follow up labs learned that I had also contracted Hepatitis C through sexual contact. Fortunately, I caught both illnesses in the acute phase, and decided to go on medicine right away.  I remember the day’s leading up to this day waiting for my result, and then came the call from the doctor’s secretary.  “Kevin, the doctor needs to see you.  When can you come in?”
I told them I could be there within 30 minutes. I hopped on the subway from 53/2nd where I was living in NYC to 17/3rd where my PCP office was.  In my gut I knew what the outcome would be. I walked into the Doctor’s office, and was met with a smile by the Receptionist.  I sat down and within minutes I was called into a room I had never been in before.  Another clue and with a pit in my gut now the reality was setting in.  The Doctor walked in, and with a very expressionless face put a paper in front of me and told me, “it” came back positive.
I didn’t cry, and I had no questions. I knew what HIV was, I knew it could be treated, and I knew I wasn’t going to immediately die, but I didn’t know how long I could live either. The doctor explained it was not a death sentence, asked me how I was feeling psychologically; I said ok (even though I wasn’t) and then left his office.
I was on vacation from my job that week, and suddenly found myself in crisis mode. My mission then was to seek help and I began to put an immediate action plan into place. First, I called Callen-Lorde which was the local LGBT clinic and they were able to get me in that NEXT morning at 930 am. They drew about 20 tubes of blood on that first visit and I made a follow up appointment one week later.
Next, I called the Realization Center in NYC, an outpatient facility in NYC to get help for a substance abuse issue; that issue was an occasional weekend habit I had with methamphetamine.
Then, I called my job.  I told them I would not be in the following week and filed a FMLA (Family Medical Leave Act) claim. This gave me the breathing room I needed to come to terms with my new diagnosis and to get a handle on a addiction issue that I was dealing with for nearly 7 years.
I enrolled into an intense outpatient program at the realization center and a support group. I met someone in the support group who introduced me to CMA (Crystal Meth Anonymous). I attended nearly daily meetings, and got a sponsor right away. I was meeting and interacting with people who shared the same issues I was dealing with, and I found a lot of comfort in that.  
When I was 28
A month later I went back to my doctor for follow up lab work, went back a week later. This time he told me that I had also contracted Hepatitis C.  The pit was gone in my stomach from learning of my HIV diagnosis, but now I felt like someone kicked me in my stomach. This time I broke down and cried. HOW COULD I GET HEPATITIS C?  I knew nearly NOTHING about it.  The only thing I knew was that Pamela Anderson and Naomi Judd had it, and that it was mainly a disease associated with IV drug users. I was not an IV drug user.
So how did I get hepatitis C? I got it through either sharing a straw to snort methamphetamine or through unsafe sexual contact. During the month I was at the realization center I felt all along that it was not the program for me. I needed more structure, and needed to be surrounded by more LGBT peers.
While the staff and programing was ok at the Realization Center – I needed different level of care for what I was now dealing with.  HIV, Hepatitis C, and a Substance abuse issue. I was on the verge of a total breakdown.
Someone told me about the Pride Institute just outside of Minneapolis, MN. They are an LGBT treatment facility.  I spent 32 days in the facility, surrounded by peers, and an amazing staff of caring individuals. They allowed me to come to grips with my dual diagnosis, and learn about my addiction; now cryal clear for nearly a year now.
After leaving pride I was essentially homeless. My apartment lease in NYC had expired. Facing no place to go – I called my Dad. I told my dad in one call that “I am in rehab for crystal meth, that I have HIV AND Hepatitis C and that I need a place to stay when I get out”.  He told me I could come live with him and his Girlfriend.  Later I learned my Dad broke down when he got off the phone with me and cried thinking I was going to die. My father does not cry. In hindsight I wish I had broken the news a bit better.
I left the Pride Institute and went straight to my Father’s house in Upstate, NY.  I had caught both my HIV and Hepatitis C in the acute phase, which made my odds of curing hepatitis C much better. I first began treatment for my HIV and went undetectable on the Truvada/Isentress combo within 5 weeks, and I have been since. Once my CD4 count was around 500 I began treatment for my Hepatitis C.
Because I had caught it acutely my doctor at Mount Sinai Hospital felt comfortable enough for me to stop at the 24 week mark instead of the standard 48 week protocol. I went from a 5 million viral load of Hep C to undetectable around week 5, and have been undetectable sense. Due to my sustained viral response my Doctor is VERY optimistic of a cure, the official cure will be known 24 weeks post Hepatitis treatment; which will be in three more months.
The treatment was not a walk in the park, but it was also NOT as bad as read about online. I had a lot of fatigue and anxiety. During interferon treatment I could barely leave my house because my anxiety was so bad, and I was just so fatigued.
If I was not lying in bed I was sitting at my computer advocating, sharing my experience, telling my story, bringing further awareness to HIV and Hepatitis C and educating others through my blog. My blog (writing) and advocacy and reaching out to others is what has gotten me through the year.

June 2010
 So, one year later I am in a bit better place health wise, my body from the stress of the year and interferon treatment is not very conditioned. I still feel very fatigued and somewhat weakened, but I am going to push through and I think the following will begin to make me feel better. This week I will begin back in the gym starting off with light cardio, and I have also decided to undergo bi weekly massage therapy that is offered free of charge via my local ASO (AIDS Service Organization).  My immune system 4 months post hepatitis C treatment is getting better every day.
I will still be blogging and doing activism work, but my attention now will be more focused on doing great things in the community. I will begin a volunteer project with a local ASO where I will be going out into the community to educate, tell my story, and provide preventative services, and connect others to existing services. I have also become a DAB the AIDS bear Ambassador of Hope, and plan to volunteer at the pediatric AIDS unit at the local hospital.
My attention will be further focused on my Mother – who has just completed all pre lung transplant testing.  She has “passed” all the tests – no abnormalities found other than her lungs.  Hopefully soon she will be placed on the UNOS transplant list. My Mother has had sever COPD for nearly 6 years now.  I will also be looking for work within the realm of HIV education/awareness, and community outreach.
My final thought. If you are newly diagnosed; it is not the end of the World. However, seek medical help as soon as possible. Educate yourself. Join a support network. Find a talk therapist. Don’t try to do this all on your own. Be patient with yourself, and processes. Reach out to a friend in need. You are NOT alone. You can go on managing your illnesses and live a very long and fulfilling life.
If you would like to e mail me to ask me ANYTHING I will answer you back. If I don’t know the answer I will get it for you. Be well and take care of yourself.
Kevin Maloney

My Mom

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