Back From the Brink
By Thomas DeLorenzo
November 10, 2009
I was not always this outspoken with my status. In fact, in the beginning, I was incredibly fearful. I knew I had AIDS well before the doctors made it official. I was living in denial not stupidity. I knew that when you lose as much weight as I did and you are eating McDonald's pretty much every day, something isn't working right. I knew that the sheets were not supposed to be wet every morning from my never-ending night sweats. I knew all that -- but I still did nothing about it.
I like to say that I didn't make a move until I felt comfortable with my insurance. Being self-employed, I get the privilege of buying my own policy, making me vulnerable for cancellation at the insurance company's whim.
I tell people I didn't use my policy for the first year in fear of being cancelled for a pre-existing condition, but what really happened was I was just too scared to confront the truth. I had seen it all before and still was in complete disbelief that my body could actually betray me like this. I mean, didn't we have some unspoken bond, that if we worked together, we would be better off?
Apparently my body didn't get that memo.
Instead, I lied to everyone around me as to how I lost the weight, become gaunt looking, and just slowly removed myself from the social scene. As a publicist, you are expected to go out all of the time. I could barely make it through the day, much less spend the nights at endless events, and typically I would head straight to bed after work for what was only going to be a few minutes, turning quickly into the entire night. I would miss meals just because I was too tired to get up to do anything about them.
I finally opted to go and visit my long time therapist, Laura Morris. I just blurted out simply, "I am sick." Being the Jewish mother she was, she instantly clung to other reasons than that elephant I had now sitting in the room with me. Instead of giving me advice, she simply shared her news -- her breast cancer recently returned for the third time and she was in the middle of chemo treatments. I had my first survivor buddy.
Initially, I would just sit in my apartment crying, and not doing anything about what was going on. And I just kept getting sicker. At one point my father said, "Are you okay?" and I lied and said I was fine, knowing full well what was going on in my body.
Christmas that year would be a challenge, for I could barely make it through the day. I had made this bargain with myself that I would get through the holiday and I would immediately find a doctor in Los Angeles and begin treatments. I was home, and it was December 26th, 2000, and I was having AIDS symptoms as if it were 1988 all over again. I was underweight by 25 pounds, experiencing spiking fevers and rarely made it off the couch, much less out of bed. I remember praying to God, to have him give me an appetite in Christmas Eve, so my family would not notice that I was hardly eating now.
I somehow found the nerve to attend my 20th high school reunion, in spite of the fact I looked horrible. I kidded myself with the fact that I was able to fit into smaller pants than I did in high school. Never mind that at that point I weighed what I weighed in high school -- something a man who was 38 should not exactly be able to say. I look at pictures of myself from that evening and just wonder what I was thinking. But yet I knew what I was thinking --- I thought I was going to die soon and this would be my last chance to see these people ever again.
I finally made it back to Los Angeles and began the promised hunt for a doctor. With it being between the holidays and having only a few brain cells now fully functioning, I had a difficult time finding a doctor. I finally caved and called a friend and asked for help. I told her I was sick. She said I probably had the flu. I said, "No." She paused.
Prior to that I honestly didn't think I deserved to be saved, that I had caused this to happen and I had all of this and more coming to me. I thought that people would run from me and that I would become this social pariah, alone and unloved. It was only when my back was against the wall that I reached out for help.
The first doctor's visit at Cedars-Sinai, on January 3, 2001, was, well, rather odd. I was completely scared to go alone, or be left alone at any part, and insisted that a friend come with me. This friend is a child television star. She was incredibly supportive, but everyone recognized her. It kind of made for an awkward tone for something so serious. In fact, when my blood was being drawn (for the very first time so I was horrible at it), she was busy signing autographs. It was completely absurd. My advice -- don't bring a public figure to such dramatic moments in your life.
The doctor immediately told me what I had feared so much hearing, that I was most probably HIV positive based on my wasting, no appetite and very noticeable thrush.
But the doctor completely missed two major points -- that I had PCP [pneumocystis pneumonia] and that "thing" on my face was KS [Kaposi's sarcoma]. He insisted that he was a KS expert and it was not KS. I would find out he was completely wrong a few weeks later, after the PCP he insisted was not there either was finally out of my system.
A week later, on January 10th I was supposed to return to the hospital for my lab report, but I felt absolutely too weak to move. I called my doctor who gave me my laboratory results on the phone: I had AIDS: my CD4 was 60 and my viral load was 300,000. My doctor instructed me to come to the emergency room immediately. A friend picked me up and I was diagnosed with PCP in the emergency room. They admitted me and I was hooked up to intravenous Bactrim. It turned out to be a dramatic rescue. After I had stabilized, my doctor told me that I had been very close to dying. If I had stayed home, I would have lasted only two to three days more.
After a two-week stay at Cedars-Sinai, I finally found the courage inside me to fight this disease and move on with my life. Actually I can pinpoint the very moment -- it was after I told my mom. The second you tell your mother you have AIDS; everything is all downhill from there. I started immediately to make calls to everyone in my life that had to hear it out of my mouth first. That had to be the moment I took control of my virus.
Many doctors' visits followed. I ended up with a situation they had never seen before -- it now has a name Immune Reconstitution Inflammatory Syndrome, (IRIS) -- because no one had been to the brink and had come back like this before. At least not in 2001. They didn't see PCP and KS anymore. I became a textbook case and was poked and prodded by every intern Cedars could find in Los Angeles County.
There was a moment in March that reminded me of why I fought. It was when I met my second nephew for the first time. He was born as I was flying home to see my family. I just held him in my arms and thought, "My God, I almost didn't make it to meet you. I came so very close to not greeting you into this world." He was just coming into this world, and I came so very close to leaving it just a few weeks before.
Now, I have amazing health, can't keep my mouth shut about my struggles with HIV, am constantly looking for ways to help others with HIV that do not have the advantages I have --- it's a complete turn-around. I am about to do something few people attempt to do at my age, much less people with AIDS -- I plan to attend law school in Fall of 2010. The idea is to study health policy law and take my activism further and get a chance to make more of a difference for many, many more people.
AIDS has taught me much. I would have never guessed that something so very horrible would have turned into an amazing experience, but it really has. It has defined the man I am today, and I like the person I am becoming. I have traveled many roads that people with immune systems don't get a chance to -- good and bad. And I am no longer that scared, insecure boy from Schenectady, New York.
Activists are definitely made, and are not born.
To contact Thomas, click here.
Comment by: Adonis
Wed., Oct. 20, 2010 at 8:31 pm UTC
Amazing! I know this entry is almost a year old but man, how amazing is this?
We all fear something like this. Especially when you know youve put yourself at risk. I am no exception. After a scare in 2005 I worried myself sick, literally. The more I read about the disease the more I was convinced I had it. Because of the stigma and lack of knowledge, MANY people become paranoid and obsessed with being infected and most have successfully convinced thier sub-conciounse that they are pos. And yes, like Tom just stated, vice versa.
Denial and not doing anything about it are by far worse than a pos result. Cause you can say "Im pos but healthy" rather than "im pos and dying". Choosing to live no matter the stigma or life change is always the route to take.
And for those who google and pray for someone or something to confirm they are not hiv pos, relieve yourself of any self inflicted illness' caused by stress and worry..go and get tested. As Tom and so many others prove, its well worth it and can save your life.
Im not hiv pos, but Im dating a guy who is. Not always the easiest thing to do at times, but at the end of the day when all is said and done, it is MORE than worth it. Educate yourselves abd understand your risks. There IS life after HIV.
Be well and may peace be with you! God Bless
Comment by: wholeHealthyHappy
Thu., May. 27, 2010 at 7:15 am UTC
Your blog was very inspiring. I went thru a year of the fear, denial, loss of weight, thrush and excuses and excuses and excuses. Then along came pnuemonia, admittance into the hospital and a PCP and AIDS diagnosis. Only my CD4 was 8 and my VL into the millions. I had a complete mental breakdown. I called my closest family and my boyfriend who was and still is negative and knew i was dead. All i talked about was what needed to be taken care of when i was gone. Dispite the fact that the doctors, my family and my boyfriend kept saying i would be ok. I didn't sleep for almost two week and of course that added to the insanity. What snapped me back to reality was when my boyfriend stopped me from pacing the floor, set me down, slapped me in the face (not hard but enough to get my attention) and said "you are driving everyone away from you. Snap out of it and fight to live". At that moment I saw how tired and worried they were. They had to take me to the doctor,feed me,speak for me and give me the meds at the appropriate time, basically saving my life. Mean while all i could think of was ME dying. I decided at that moment to fight not only for me but for the people that love me. That was months ago and I am still here, healthier than i have been in years and on a great ARV, Vitamin and Healthfood regimen. I am now dealing with Immune Restoration Syndrom because my CD4 is rising and my VL is decreasing rapidly, which is good news to me. My life is pretty normal besides the reminder of my status when my reminder goes off to take my meds. I am still working on my degree and planning to be here til I am a very old woman. I am so thankful for the people in my life that love me unconditionally and I make sure they know how much i love them. I see the beauty of life now. The bills are paid and I won't waste a minute on trivial things and I'll get to Amsterdam one day. I see every flower petal and notice all the shapes the clouds make on any given day.
Comment by: Senator Ihenyen
Mon., Feb. 22, 2010 at 12:25 pm UTC
Quite an inspiring and touching story! Although I'm negative, I've a deep interest in the HIV/AIDS epidemic, and feel greatly concerned for PLWHA and PDWHA. As a young writer, I've been putting together a collection of poems, Ripples Across Lives, since 2005. To be completed on or before World AIDS Day 2011, I strongly feel that to fight HIV/AIDS we must keep talking about it, and poetry does have a great way of making this communication more meaningful, penetrating, expressive and involving. Visit http://senatorihenyen.wordpress.com/ripples-across-lives-poetry-against-hivaids/
Sat., Feb. 6, 2010 at 10:52 am UTC
Thanks Thomas for a very encouraging stories. I had almost a similar experience like yours. I was in denial for several years until i was diagnosed in 2006 with CD4 count 25 and VL 750K. I was in the hospital when my yougest nephew was born..i even told my family that i am leaving and that nephew of mine is kinda replacement of me..But now i am much much healthier and actively participated in encouraging other People living with HIV..
Comment by: Mugu
Wed., Jan. 20, 2010 at 11:19 am UTC
I pray for everyone +pos to live a long life and happy.
Comment by: Tobias
(Great Falls, MN)
Thu., Dec. 24, 2009 at 12:21 am UTC
Thomas I keep reading your story and it keeps giving me just a little more hope every time I do. I found out from the hard from a blood drive I had coordinated through my school in NOV 2005. that winter I had a CD4 count of 784 with insurance and while I was finishing my undergrad degree. I put HIV in the back of my min, I had a year left and no insurance and no one to confide in except for my mom who periodically reminded me to get a test but ignored her mainly because she didn't seem so interested in more than just a test even now she's not so well informed about the subject. I got a masters winter 2008 and never went to the doctor until I my skin started failing. I had the worst eczema and the topical steroid cream wasn't working. So here I was wasting away earlier this 2009. I finally went to a clinic after moving back home and found out my cd4 was 6. I thankfully got a job with great insurance. Upon my first to visit to my GP I came in exasperated with PCP, started atripla and got IRIS/MAC, my immune system since start in June has rebounded to 164 c/ml but has risen since last month to 10.9% and I have been undetectable for 2 months I still have the mac/lymphadentis but my emotional state is way low, I feel fine except for my neck, I haven't been hospitalized and my doctors tell me my prognosis is good/hopeful. I hope one day my immunity will be above 14% will cd4 counts well above 200. Until then I will keep reading and praying and ask God to forgive me. All it took was one night to get this disease and a lifetime to live it, I just hope time softens that and heals me mind body and soul.
Comment by: Henry
Fri., Dec. 18, 2009 at 11:38 am UTC
Wow, Thomas, thank you so much for sharing your story. It's inspiring. As someone diagnosed not too long ago and doing OK, I am very worried about insurance. I have it now but scared to lose my job and lose the insurance etc. I was wondering, as someone self-employed, have you been able to keep and afford insurance? Don't rates skyrocket for someone with a chronic condition? Any advice or info would be greatly appreciated!
Comment by: tina
Wed., Dec. 9, 2009 at 7:29 am UTC
hmmmm what a sad story. i was lucky i had the test early and was confirmed i was hiv postive. i thought thats the end of my life. i even nearly killed myself cos i told myself what a disgrace there my big sister told me -- tina u can be cured and i realized this on the 16 of nov 2009 and luckly my CD4 IS 360 and advice not to take inn any medication. Thank u all for ur view. We all have to love each other!
Comment by: Daryl
(Sydney tho in Boston atm)
Wed., Dec. 2, 2009 at 6:10 pm UTC
Someone said how it makes us live a full life, isn't it the wonderful truth.
Comment by: Fini
Sat., Nov. 28, 2009 at 5:31 pm UTC
I would like to thank you for your amazing story. I am so glad that you gain the benefits of the medication and that you got your life back. We have lots to be grateful for -- just think about the hundred of thousands who had the same experience before HAART and just got even more sick and suffered horrible and had no hopes what so ever -- just waiting for the slow and painful death. We can only imagine the suffering.
Your story also makes me want to tell about a simular story. My best friend didn't actually know she was HIV positive. She was in no risk zone and never thought about HIV or AIDS when she was sick. After being sent to hospital with a painful kidney stone, huge lymphs, and weight loss they also asked for a HIV test as a part of checking out all options.When it came back positive my friend could not believe what she heard and what was even worse was the CD4-count : Zero and VL over 1 million.Later it turned out that she had been positive for over 10 years without knowing.
Treatments with Bactrim to fight of the worst infections followed by HAART made me watch Lasarus get up from the death.I could not believe my eyes.It was a miracle. Today, 7 years after, she is better than ever --CD4 650 and zero VL. No side effects. Working full time and planning a baby in close future. Thank you all scientists who made this possible.
Comment by: fe gonzales
(dubai united arab emerates)
Thu., Nov. 26, 2009 at 11:45 am UTC
i am very amazed at all the people who have aids that are trying to live a normal one. People knowing it, simply change their treatment to you because even though i dont have the sickness, being different is like having aids and i admire you for your courage. keep it up and God Bless...
Comment by: Susan
Tue., Nov. 24, 2009 at 6:42 pm UTC
I am so glad to know you are doing so well. I have a brother who has AIDS we also found out when he got really sick no one had a clue, not even him. Thanks God he had a second chance in life too, and now is doing really good. We are a very close family he knows he always will have us.
Comment by: Mickey
Mon., Nov. 23, 2009 at 4:23 am UTC
Thanks all for the inspiring narratives of what you all have gone thro with this virus. More so to Tom for the good fighting spirit. I tested poz in April 06 n my CD4 was 666. I thank God av nvr bn seriously ill safe for a few bouts of flu here n there. I started meds in July this year when my CD4 count dropped to 456 n thot it wise to go on meds given the latest argument in favour of early treatment. By Sept my CD4 was 624 after being on meds for only 2 mnths. My appeal to all is to go for the test to ascertain your status. With early treatment, life wont be that bad. Many thanks to thebody for this is my only support group since I avent gone public yet except with my spouse who-thanks to God turned out -ve. For those of us living in Africa, u'll agree with me there is still a lot of stigma attached to this disease. Many thanks to all of u for sharing your experiences.
Comment by: Carol
Fri., Nov. 20, 2009 at 11:59 am UTC
Babe: A beautiful piece. Do you remember the ride to Cedars and how it was pouring raining. I'm so glad you are still here and still fighting. After all, you are just too fabulous not to have made it! xoxoxoxo CW
Comment by: Kristopher
Mon., Nov. 16, 2009 at 12:15 pm UTC
I can only say this: HIV medication works! I have absolutely NO side effects and I feel better than Iâ€™ve ever felt in my life. My VL is undetectable and my CD4 has gone from 300 at diagnosis in 2005 to the 800â€™s now. If anyone is juggling the idea of dying vs. starting medication when the time is right then FORGET it. You can take the medication and LIVE a normal life. In this day and age not taking the medication is simply foolish. Please choose to live!
Comment by: Leonardo
Sat., Nov. 14, 2009 at 10:20 pm UTC
I am happy for you! you are an example for everyone living with Aids.
God Bless you always and keep you save and well.
Comment by: Jasper
Thu., Nov. 12, 2009 at 8:54 pm UTC
I had a similar experience. I was devastated to learn the truth, but I decided that this situation was intended to be a wake-up call and not a death sentence. I was given a second chance at life and I must use it for good will. So I'm entirely dedicated to that purpose. I learned clearly what is sincere compassion in people and I seek to further that in myself. Bless you for your awareness.
Comment by: Rick
Thu., Nov. 12, 2009 at 1:23 pm UTC
I am sooo very happy you're doing better! I also went a long time without wanting to imagine the worst, that I was HIV Pos. Eight years ago I sat in the hospital and found out with my partner by my side. He was then told a few weeks later he too was pos. We are living a good life together and I have since been told I am now considered a AIDS patient because my CD4 count went below 100. I am healthy and am looking forward to a LONG LIFE with a man I dearly Love. Best of LIFE to You and I hope you too will have someone special to spend your days with. Hugs
Comment by: Anna
(Tanzania, East africa)
Thu., Nov. 12, 2009 at 6:42 am UTC
Thanks for your inspiration. I am "pos" but not in denial. In this part of the world not many want to disclose their status. My partner has since died, almost 2 years now. He was in denial big time, & I played a risky game of no proper protection - now I pay the price!! Not on meds yet, CD4 has not gone helow 500 - tnx God, but I don't feel 100% most times. Hope that my health will hold up. We also don't have the right clinics/HIV professionals who can give the right advice, etc. But there are some hospitals that will check your CD4 & if it's below 200 will put you onto meds asap!! I had enrolled to "The Body" when my partner was still alive, & it has supplied me with many guidelines. And as for you, please keep up the good work, Blessings to you, & all of my fellow "pos pals." I many times feel like giving up, life can be so very hard, but then again, I think I should fight for it, so let's be there for each other. THANK YOU
Comment by: Tom
Wed., Nov. 11, 2009 at 11:51 pm UTC
Yeah, me too -- all these different stories are heartening as I have lived them. This summer of 2009, I had CD4s of 2, PCP, wasting, and a 2 week hospitalization. I was told I would die while in the hospital- I prayed to die, then surprisingly lived. Then, the doctors said I was going to die immediately or within 2 years. I was off of work for a month and half. Now, after 4 months with treatment, life will never be the same. Suffered a demotion at work, but thankfully kept a job with health insurance. Nothing looks very good, and severe depression reigns. AIDS is still a real killer, and I am glad Thomas D is telling his story.
Comment by: Kellog
Wed., Nov. 11, 2009 at 11:12 pm UTC
Thank you for taking the time to give your story. I was just diagnosed six weeks ago after feeling tired for awhile. My GP found me to have a low white blood cell count and sent me to a blood specialist. I was shocked to find out my positive status, then even more shocked to find my CD4 count was 60 and my viral load was 1.5 million. Today, after 3 weeks on medication my t-cells have risen to 195 and VL is down to 1500. Although I hadn't had any behavior classified as "risky" according to doctors, I am proof that it isn't always the high risk stuff that transmits the virus. Knock on wood, I've been fortunate not to have found out the hard way by being in an ER with PCP or some other illness.
Your story is an inspiration, and this whole experience makes me want to tell everyone whether straight, gay, male, or female to get this test along with your annual physical. It's hard enough to find out your positive, but 10 times harder when you find out it's advanced. But above all, it's treatable and the treatments in today's world work. I'm looking forward to my CD4 number to keep growing and living a normal life whereas 6 weeks ago I couldn't stop thinking about possibly not being here by Christmas.
Comment by: Matt
(Exeter Uk )
Wed., Nov. 11, 2009 at 5:09 pm UTC
Hi buddy, I have read your story. I was diagnosed in 2002 and a have been through similar things, but not so extreme. I just wanted to say that I am pleased that you have been able to turn a corner and to be able to survive when the odds were against you. Bless you, Tom, you are an inspiration. Thanks for your story, pos for 7 years and fit and healthy still looking forward !
Comment by: Marshall
Wed., Nov. 11, 2009 at 1:50 pm UTC
I am 47, straight and found out in April that I had AIDS, PCP, MAC and I too almost died. My wife and I learned together which was crushing for both her and I. I am no saint and the 90's had taken their toll. I was in denial, until I got sick and no one knew why. Finally, the doctors discovered it was PCP and AIDS. I had a TC count of 3 and viral load over half a million. I am doing much better, but the meds, lots of meds for both HIV and MAC, are making me sick. Thank God for pot. It makes the nausea much better. But everyone, I mean EVERYONE, no matter your sexual orientation, should be tested. God bless all of you and take care of yourselves.
Comment by: Jason
Wed., Nov. 11, 2009 at 1:41 pm UTC
I am so glad I decided to go to the doctor and get medication. In fact, when I found out I had HIV I gained 25 pounds (not a good thing). I've never experienced any of the physical ailments you described -- thank goodness. HIV denialism is retarded.
Comment by: Berta
Wed., Nov. 11, 2009 at 12:42 pm UTC
It seems, dear Thomas, that life still has much to offer you, as you so graciously offer it all back...quite an inspiration you are....loving all you do and will do.
Comment by: Dan
Wed., Nov. 11, 2009 at 11:12 am UTC
I hope I get to the place you have someday. I have HIV. I have no one to talk to. I don't communicate well or respond well to other people. I don't know how to talk. I don't talk to my doctor because I don't know what to talk about & he always looks at me like I've been so bad. He shuffles through my file and says "ok, no worries, you'll be fine, see ya in 3 months". My CD4 count is around 300 though steady. Still, I'm pretty sure there's more to talk about than just "fine". I tried joining a supporter's group but got a terrible panic attack, everyone stared at me and felt so embarrassed I never went back. I quit my job because I keep getting drunk at work and arguing with my boss and felt I couldn't do my job well enough any more for me to justify them keeping me there.
I have no appetite, lots of night sweats, no energy and terrible headaches and nausea but it's not Aids or meds coz I'm not on any yet, and I know they are just the hangovers I wake up with everyday. I drink myself to sleep every night to keep the reality of HIV and the loneliness at bay. I feel I will never work, never go anywhere, never do anything again. My life is over. Probably I'm in deep self-pity and denial right now, but I have nothing to live for any more. What's the point? I'm just gonna die in a few years any way. This infection sucks.
Comment by: LisaMurray
Wed., Nov. 11, 2009 at 9:11 am UTC
Thomas! You have just completely inspired me. And I was always impressed by you but now I am even more so. You are incredible. I am so glad you went to the ER when you did or I would have never met you either. Thank you for everything you are doing and best of luck in Law School. You're going to be AWESOME!!
Comment by: LisaMurray
Wed., Nov. 11, 2009 at 9:04 am UTC
Thomas! You have just completely inspired me. And I was always impressed by you but now I am even more so. You are incredible. I am so glad you went to the ER when you did or I would have never met you either. Thank you for everything you are doing and best of luck in Law School. You're going to be AWESOME!!
Comment by: dr george pradhaan, mbbs,
Wed., Nov. 11, 2009 at 8:34 am UTC
i will relay this fighting spirit to my PDWHA..the last stage for PLWHA. but my people are soooo poor and miserable, so rejected, that they will half laff.
Comment by: dr george pradhan, mbbs/ ind
(VisakhaPatnam City, Ind.)
Wed., Nov. 11, 2009 at 8:00 am UTC
activist delorenzo, thomas, it is great to read about your indomitable spirit, in spite of hasty doctors, and slack situations.I am right now into a pilot hospice at home project with a tiny budget, so others can come and see money is not the criterion, but the willing helpful smiling face for the end stage People Dying With HIV AIDS. I am a general practice doctor since 1951/Vietnam!/ Zambia/ and willing to learn from such like you Thomas. Bless you. A snail mail from you with my name and city will get to me.
Comment by: Rick
Wed., Nov. 11, 2009 at 7:45 am UTC
Wow.. My experience is very similar with denial. My partner of 6 years was in the hospital during his final battle with AIDS in October of 2000 when my fevers and sweats began. My weight loss attributed to being his caregiver and what goes along with it. The fevers.. I even blamed them on stress and lack of rest. I know.. But it was what I did. By the time I lost him in November, my fevers were constant and I felt horrible.. then came the breathing issues that I ignored.
It went on until the end of January. Then and only after actually not recognizing myself in the mirror, did I go to my Doctor, being told that I would be dead in a few days if I did not go immediately to the hospital. There being diagnosed with PCP and a CD4 of 56 with a 300,000 VL as well. I had a nurse tell me with great enthusiasm that I'd live for another 3 or 4 years since many advances had been made. 3 or 4 years didn't seem like a good deal to me. I have fought many battles of my own now due to HIV, a few years past my expiration date now and I plan to keep winning.
Denial... I survived it, but it wasn't easy.
Comment by: Crystal
Wed., Nov. 11, 2009 at 7:04 am UTC
As always my dear, you are an inspiration. We've been friends for well over two decades and you never cease to amaze me. Don't ever stop.
Comment by: Ernesto F
(San Francisco, CA)
Wed., Nov. 11, 2009 at 6:55 am UTC
I am poz and I was tested on July 2009. My CD4 was 60 and v.l. was 574,000. I have better numbers at my first month with meds. I am fighting to find the way to say of all people that could be possible, importance to be tested. Prevention and tested on time are very important. Thank you so much.
Comment by: Thomas Bartell
(Toronto, Ontario, Canada)
Wed., Nov. 11, 2009 at 5:45 am UTC
As a fellow Phoenix, I applaud your strength to return among the living and to live to tell the story that so many people will benefit from. You have, in doing this alone, helped so very, very many people already so you are well on your way to achieving your goal!
I came back from 1.7 T cells, 4 years ago, and know hover around 700. It was a long way back up but well worth the effort. Life is for the living. It can end at any time for anyone. We must keep fighting for ourselves and for all the people we can help. Keep at it Thomas. You have a bright future ahead of you no matter how crappy we can feel from time to time. Stay the course my friend. Continue to inspire your realm. You have inspired me. A kindred spirit. Live long and prosper!
Comment by: jeremy
Wed., Nov. 11, 2009 at 4:28 am UTC
The day that you are told your staus is the day that changes your life forever, for better or for worse........
Anyone or group of people that fancy a holiday in Spain with an other positive " poz " person. Please get in touch. I organise activity, hiking holidays on the sunny Costa Tropical near Granada and donÂ´t have ANY contact with other positive " poz " people here in Spain. It would be good to hear or see you all.
Tom's story is an example of what we all have to go through and we are the lucky ones that have made it through the dark tunnel and come out into the light....... Well done Tom and all power to you now and in your future career.
Cheers. Jeremy. Spain.
Comment by: hk
Wed., Nov. 11, 2009 at 4:01 am UTC
Good on you!! I too had PCP and the IRIS thing and the CD4's down to 54. That was in 2004. I too knew but was in denial, I think I know what you went through!!
Comment by: CB in NYC
(New York, NY)
Tue., Nov. 10, 2009 at 11:44 pm UTC
As someone who knows you, to not have known while all all this was going on, I can only imagine how you felt so alone. Certainly explains the large gaps in communication through the years. You are hope personified for so many others and I applaud your openness and honesty, and how truly brave you are. If something like this can make someone a better person for going through it, then you my friend are the best!
Comment by: Terry
Tue., Nov. 10, 2009 at 11:18 pm UTC
I'm hoping that this story is the impetus for additional discussion and deeper understanding of the many reasons why someone would remain in denial about their HIV+ status. When I left the field of HIV care in 2004, there were two very salient trends on my case load: (1) the age when diagnosed with HIV getting higher, and (2) the number of those diagnosed with HIV and AIDS at the same time getting higher (translate: years of an HIV+ status without having been tested). I think that the underlying, and often unspoken, reasons for these trends are what need to be confronted honestly and openly in order to decrease the number of new infections. Having worked in the field, I was confronted daily with HIV testing and treatment, so I wasn't able to be in denial (fortunately) and got tested q 6 mos. before I seroconverted - but I know the many reasons why I chose to put myself at risk along the way. I'm hoping that your article will get more people to speak openly about these reasons (I know others use the same rationalizations I used). Thanks for sharing.
P.S. Fire your therapist. In the moment you needed her most, her own fear of your truth prevented her from helping you verbalize that truth and, instead, she made your time in the session all about her. This is probably why you saw her as your "Jewish Mother" and your "survivor buddy." Either role is really an attempt to fix you rather than empower you to find within you the strength that all of us readers now know you already had.
Comment by: Ack
(Berkshire Cty, MA)
Tue., Nov. 10, 2009 at 11:12 pm UTC
If you decide to go into law, remember to be a problem solver, and not a problem yourself. It takes diligence, tactfulness and a dose of kindness to calm the rough seas of politics. Do it well, and you will make a path for generations to come. Do it poorly and cause havoc and ill-will and you will have nothing to show for it except ruined lives and nothing else to show for it.
from a healthy HIV Poz, undetectable for 12 years...
Comment by: Michael
Tue., Nov. 10, 2009 at 11:05 pm UTC
Awesome testimony Thomas. Thank you for sharing, and giving hope to others living with this disease. God bless you.
Comment by: Raymond hilerio
Tue., Nov. 10, 2009 at 10:50 pm UTC
I too was very sick in 1997. I was diagnosed in 1988. When you were diagnosed positive in the 80's it was a death sentence. All I wanted was to die and did not go to any doctors until 1997. When my Dr. said you are dying. At the time a new medicine was coming into use, the Protease Inhibitor (P.I.) my doctor put me on it and lo and behold I'm stil here. I'm doing quite well and Looking forward to go to Spain in the fall. I owe this to my. Dr. J. Hoffman
Comment by: Sue Ricciardi-Michalski
Tue., Nov. 10, 2009 at 9:37 pm UTC
I am so sorry to hear you have to go through such an awful disease. You are very brave.
Comment by: Ted
Tue., Nov. 10, 2009 at 9:01 pm UTC
I was diagnosed last December at age 32. I got a mild flu that turned to strep-pneumonia. I let it go too long. I had severe pains in my side and shoulder blade. I passed it off as a pulled muscle. I started feeling better actually that day, and then got really severe pains and couldn't catch my breath. My lips and skin were turning blue and I had to be rushed to the hospital. Many people get strep-pneumonia, but evidently young people don't end up getting so sick with it. This is why docs wanted to test me for HIV.
The diagnosis wasn't a total surprise. I had thought I had it since 2001. I remember getting a mono-like illness with sore and swollen lymph nodes that lasted several years. I was too afraid to get tested. I didn't want that news. My CD-4 in the hospital was 171 and they told me I had AIDS. They said to ignore that number, because it was artificially low due to being sick. Sure enough, my CD-4 rebounded to over 1,000 after getting better.
I started seeing an HIV doc right after. They first told me they were sure I had a false/positive, because my number were so good. So when they confirmed it again, it was like being told all over again. Since my CD-4 has remained high and viral load low, I'm not on meds. This has been a big debate--keep waiting or start meds. I have be dealing with depression and severe panic attacks. These insprirational stories have helped me a lot. And, the beta-blocker for high blood pressure has helped, too.
I quit smoking last year and get all my vaccines. However, even with my "good" numbers, I still fear getting sick. I guess it is just a process to learn to live again. I have to learn to control the virus instead of it controlling me. My family wants to go to Florida for Christmas, and I have a lot of anxiety just thinking about it. I'm still afraid to be so far from home. I fear I will get sick.
So, reading stories about people who were in worse shape and returned to good health does help me realize I'll be ok.
Comment by: Jerry Robbins
(ST. Petersburg, FL)
Tue., Nov. 10, 2009 at 8:26 pm UTC
I too fell ill too late and almost died from being to scared to get checked for AIDS. I had almost everything in 1997 -- pcp, thrush pancreatis, cryptococcol meningitus, wasting. I was dying. I had to be rushed to the hospital. I fell into a coma-like state for two months to wake to pain and only 95 pounds of human body that was a miracle that i was still alive. I at that time was in the hospital for three months not remembering the first two months. I wish i didn't remember the third month, it was like I was in another place other than my own body. The pain from the cryptococcol meningitus and the pancreatis let me know I was indeed alive though. It was horrible. They had to pick me up and put me in a sling of sorts to weigh me. Believe me you don't want to know what I weighed after being fed from tpn bags. And now 12 years later here i am writing this to you all. Scaring some and sharing with others. It wasn't fun then and it isn't fun now being what I want to be. My previous self who used to look marvelous. Where do I go from here I ask myself? I leave it at that for now. For all the newbes good luck and for the vets like me and Thom all the love in my heart is still there for someone to share and handle the rest of what is to come. Thank you all for still being here to write this, Sincerely, Jerry Robbins
Comment by: John Ira
Tue., Nov. 10, 2009 at 7:37 pm UTC
I think your story and style are amazing. I have to reflect on one point though. This whole IRIS thing is not a new phenomenon. I was diagnosed in 1988. By the time my partner died in 1995 I was in pretty rough shape myself. You get to a point that you have your t-cells named and speak of them as they die off. I had come down with everything your could name sans KS. I was such a bad patient that my mother was called in to manage my recovery from PCP the first and second time. She was the only one I was not historically foul too. Truth is, I feared her style of retribution. Then came the Crixivan. My immune system exploded. By the time my t-cells hit 200 I was beginning to investigate going back to work. May 01, 1996 I returned to work and I have never looked back. My t-cells grew from, I believe, 5 to sit comfortably in the 700's. I had cancer in 2008 which wrecked my immune system once again and they are now in the high 300's and recovering once again. It is hard to believe that I returned to the land of the living over 13 years ago but it's true. Welcome back to all of us.
Comment by: Jimmy
Tue., Nov. 10, 2009 at 7:28 pm UTC
dude, I love you! ...and Charles is proud, babyboy.
Comment by: Barbara Gagliardi
Tue., Nov. 10, 2009 at 7:21 pm UTC
You are an amazing and wonderful person. I am so glad you made it through all that testing and prodding. I am so very glad that you and I are friends. You are a very strong person and I commend you for persevering what you have gone through and I certainly hope to see you at our 30th reunion if they have one in 2010. Much love to you my friend. You are an amazing person.
Comment by: maryellen cooley
Tue., Nov. 10, 2009 at 7:20 pm UTC
i love this story, especially the part about why he delayed in getting diagnosed. in public health we think, hey--the sooner the better, you can get on meds...but the truth is much more complicated. I will be sharing this story with clients we work with here in our HIV/AIDS Program. I am totally feeling the love for this courageous human being who is reaching higher and higher, with such eloquence and grace.
Comment by: Mimi
(Long Island, New York)
Tue., Nov. 10, 2009 at 7:14 pm UTC
I am so moved by this story....I am so pleased to hear that you are doing so well..people need not be scared of HIV/AIDS...it is a treatable disease once caught in time...get tested if you are sexually active...don't worry about what other people may say...this is your life and nobody can live it for you but you...I applaude you for your honesty and being so frank about your story...you inspire people and hopefully they will too take care of their health.....Love is in the light...Be Blessed...Mimi
Comment by: Kelly
(SF Bay Area)
Tue., Nov. 10, 2009 at 7:07 pm UTC
Courage is walking through fear. Thank you for such a great example. May you live well.
Comment by: Jesús
Tue., Nov. 10, 2009 at 6:44 pm UTC
This is so encouraging, thanks for sharing!
PS Another ad-professional
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Who Knew So Few T Cells Could Accomplish So Much?
Until just a few years ago, Thomas DeLorenzo never would have believed he could become an HIV/AIDS activist. Before he was "officially" diagnosed with HIV in 2001 -- with 60 T cells and a viral load of 300,000 -- DeLorenzo had been living in denial. And until 2006, he was too busy dealing with the many side effects of his own HIV meds to think about helping anyone else. Then he and his doctors finally figured out the perfect med combo -- and, finally, DeLorenzo felt that he actually had a future.
DeLorenzo lives in Los Angeles with his partner and is currently attending law school at Southwestern University School of Law. His career goals include making sure all Americans have access to adequate and affordable health care. Prior to law school, DeLorenzo worked as a publicist in the entertainment industry, representing many award-winning celebrities.
In 2006, The New York Times named him an Unsung Hero in the Fight Against HIV/AIDS for his Christmas Goody Bag Project for the residents of the San Antonio AIDS Foundation Hospice. In 2008, DeLorenzo was the San Antonio AIDS Foundation's Angel of the Year. DeLorenzo's alma mater, Hofstra University, named him Alumnus of the Month in August 2009 for his work on behalf of people living with HIV/AIDS. DeLorenzo was recently appointed to the City of West Hollywood's Disabilities Advisory Board.
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