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

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