25 Years HIV and Talking
posted: 22/06/2009
He's had HIV for 25 years, Aids for 14, survived cancer and Michael's still living life to the full. The Carlisle News and Star gives the first-person story.
For 25 years Michael Hebington has been living with a disease for which there is no cure. When he was first diagnosed very little was known about HIV and much of the treatment was guesswork. Doctors now joke he will live forever and after reading his story, you begin to understand why. This is Michael's story in his own words . . .
In my own words
In June 1984 I was infected with the HIV virus. However, my journey through infection to full-blown Aids actually began one year later in my hometown of Langholm [Langholm is just outside Cumbria, over the Scottish border], where I was raised before moving to New York in the winter of 1974.
It has claimed the lives of millions of people worldwide and many of his close friends.
When he was first diagnosed very little was known about HIV/Aids and much of the treatment was guesswork.
Feeling as if he had been handed a death sentence was bad enough but with it came prejudice, ignorance and homophobia.
His health has hit the lowest possible level more than once and in all honesty, it is a miracle he has survived this long.
Now 57, Michael looks the picture of health thanks to revolutionary new drugs.
He has always been honest about his illness and although he has been the victim of some cruel acts, says people have generally been tolerant.
Those that have persecuted him have generally done so because of irrational fear and lack of understanding.
Michael isn’t hopeful of finding a cure but at least feels back in control of his life.
Doctors now joke that he will live forever and after reading his story, you begin to understand why.
New York times
After a few years on Long Island, about 60 miles east of New York City, I was now living and working in Manhattan at the Waldorf Astoria but came home for the Common Riding in the summer of 1985.
The previous summer I had mysteriously fallen ill with flu-like symptoms, lost about two stones in weight even though I was eating normally and had swollen lymph glands at the back of my neck.
My doctor in New York put it down to a viral infection, reassuring me it would settle down and after two weeks it did, though the swollen glands remained.
In October that year my family came out to the States to visit me and we all flew to California for a two-week tour.
One afternoon, sitting at a bar in San Diego with my mother, I was reading a newspaper article about a mysterious “plague” affecting a group of men in San Francisco and New York. I had this chilling sensation as I pointed the symptoms out to my mother.
I said that’s what you’d think I’d had earlier in the summer when I was so ill, never imagining that’s exactly what I did have – though it had no specific name as of yet.
Fast forward to May 1985 and the world was introduced to a new virus called HIV and also a blood test that could determine who had been infected.
In the July, when I came home for the Common Riding, my mother suggested I go to see the local doctor about my glands, which were still swollen.
test results
I duly obliged and he took some blood to send off for tests. Six days later I walked into a crowded health centre and was told by Dr Kennedy he would see me last.
In the 30 minutes I had to wait I convinced myself I had every disease you could think of, unaware of the true horror that lay ahead.
Looking rather stunned, Dr Kennedy told me that he did not know what to say other than other than my blood had come back and I had been infected by the Aids virus.
As he was very ignorant about it all, he said he’d referred me to a virologist in Glasgow, who would offer me the best advice available at the time.
He then handed me a leaflet on HIV/Aids and in a clouded haze I walked back across the street into Pelosi’s ice cream shop, which my family owned.
There my mum – also the local bookie – was sitting at her desk taking bets. She turned to me and asked if everything was okay. I just nodded to her to follow me upstairs.
Once upstairs I was shaking with fear. I handed her the leaflet and she collapsed to the ground. My dad walked in and she screamed: “My God Paddy, he has Aids.” His face turned pale as he did a U-turn and went downstairs to tell my brother, who was visiting from Guildford with his family. He advised me to keep it to ourselves until we heard what the virologist had to say.
The visit to Glasgow with my mother was a very dark day with lots of ambiguous information. We were told that only 10 per cent of infected people develop full blown Aids and if I took care of myself there was no reason I would. Sadly this information was so far from the truth as the virus was not only new to myself but also the medical world.
Once we were home my mother suggested I remain in Langholm and for a split second I considered it. But I was young, healthy and living in the middle of the most exciting city in the world so for me it was a no-brainer.
back in the USA
I was soon back in New York trying to come to terms with my illness, and it was not easy. I told all my friends who were a tower of strength but had to keep it from work, unsure of the hysteria it may cause.
I tried to get emotional support but back then there was nothing for people with Aids. Every day for about a year I was a total basket case. Not a day passed where I didn’t convince myself I had developed full blown Aids. Every scratch, rash or cough worried me. But gradually I came to terms with it all and about a year later my life was back to some normality.
However working at the Waldorf was becoming an impossible strain on me. By this time Rock Hudson had died and Aids was in the spotlight like never before. People at work were getting sick, never to be seen again and these were young men so it was fairly obvious what was going on.
I needed a fresh start before I had a breakdown so I took a brave decision and opened up to my boss. He was understanding and offered me a transfer to the World Trade Centre’s banquet facilities. I settled in well but if I thought Aids would be less visible there I was wrong. Within a month five of my workmates found out they’d been infected and none survived. Friends outside work were also getting sick and dying, but somehow I remained healthy.
I remember going with my friend Roz to visit another friend Frank in hospital. His family had disowned him due to his illness and the doctor told us he would probably die that night. I made her promise that if I ever got to that stage, she would make sure I was flown back to the UK. Sadly Frank did die through the night, but fortunately Roz never had to carry out my wish.
back to face HIV hysteria
During a hellish heatwave in August 1995 I woke up shivering with swollen hands and feet. I was in such a state that within three days I was on a flight to London with everything I could round up.
My family were waiting for me at Heathrow and took me straight to the Chelsea Westminster Hospital for tests.
We went to stay with my aunt and uncle in Surrey, but they couldn’t handle it. The next morning we were driven to Euston Station to catch the next train to Carlisle.
The porters got me a wheelchair but couldn’t get away fast enough so we were dumped in the middle of the station with all our belongings.
This was my first introduction to Aids hysteria and it stemmed from my own family.
Two days after arriving back in Langholm, Dr Kennedy arrived. The hospital had been in touch and my immune system had been destroyed.
A healthy person has a CD4 count of between 600 and 1200, mine had dropped to just one – I had full blown Aids. I really thought it was best to reveal all as it would be impossible to cover up in the long run.
Two days later my condition had deteriorated and I was admitted to hospital in Edinburgh.
Dr Welsby became my HIV consultant and after two weeks, managed to get me stable. Before going home I spoke to a friend who said it was the fastest news ever to have spread.
So I had now been “outed” in Langholm in more ways than one and had no idea how I was going to be tolerated.
1996 was the worst
Somehow I remained quite well until early 1996 with no animosity at home. But this year would turn out to be as bad as it could get
I have little memory of what happened that year other than being on a mental ward, totally out of it for weeks on suicide watch. That July I was admitted to an Aids hospice, where doctors said there was nothing more they could do for me.
It is there I remained, in a grim state, until September when my mother said she was taking me home. I had to be fed 60 pills a day – 38 for the HIV, 12 for my eye and the rest made up of sleeping pills and antidepressants.
I had developed CMV Retinitas in my left eye and needed daily nurse visits to give me medication via a drip. In the early days many Aids patients had gone blind before they died. My doctor told me that if I had remained in New York for another six months I would have probably lost my sight.
I managed to remain reasonably well until early 1999 but I had severe thrush, chronic itching, truly debilitating migraines and could barely eat.
I ended up back in hospital after fluid retention made my feet swell like an elephant’s and my usually 34-inch waist expanded to 48 inches. The cause of all my problems was the toxicity of all the pills I was taking.
treatment turnaround
Dr Welsby stopped all medication while nurses would come in nightly and drain all the fluid from my body. After two weeks my body was clear of all toxicity and I was told we were going to try a new regime of retroviral drugs, taking just three pills in the morning and three at night.
In April 1999 I left hospital weighing just 8 stone 10 pounds.
I had to travel to Edinburgh every week to make sure my body was coping with the new drugs – but the transformation was nothing short of a miracle.
Come August, my weight had shot back up to 12 stone 8 pounds and I had begun swimming, cycling, playing tennis and even going out dancing.
I had not felt like this since before I became sick and the feeling was euphoric. My outlook changed from one of certain death to a life nobody could have foreseen just months earlier.
I had been transformed by just six pills a day. I began to travel again and returning to New York was one of the most exhilarating experiences of my life.
But I was to be dealt another blow in late 2000 when my mother suffered a stroke. It became apparent that her short term memory had been severely affected and I became her full time carer. Looking on the bright side, her condition has remained stable ever since and at 83 she is still doing well.
Unfortunately my newfound zest for life came crashing back down to earth in 2002 when I was diagnosed with cancer, caused by the HIV.
This was a dramatic setback as I had been living life to the full, with HIV not being an issue other than my now three-monthly check-ups.
The cancer was nasty and ugly but was successfully treated with radiotherapy and chemotherapy. Prior to this my CD4 count had recovered to 627 but nose-dived back down to 87. However my main concern was that the cancer was destroyed and in November 2007 I was signed off by my oncologist.
Living life to the full
These days I try to live life to the full again, though it is sometimes not easy.
I have learnt that society judges people by their appearance. I don’t look like I am living with Aids but there have been times when I could have been the face of it.
Most people still don’t really have a clue about the disease. I have a disabled badge which at times has been a godsend to me but sadly it is a fact of life that unless you are in a wheelchair or on crutches it is difficult to be accepted as disabled.
I have suffered from peripheral neuropathy – nerve damage to the limbs – since 1998. My symptoms are difficult to explain but very uncomfortable when acting up.
My left eye was damaged by CMV but since 1999 has been stable. I’ve not had a migraine for years. Some days I feel horrendous – I call it having an Aids day – but mostly count my blessings. I often wonder how many people suffered so much and died from this disease, yet would probably be here today if they’d had the benefit of the retroviral medicines now available.
I'd like to dedicate this article to my friends Alvaro Vargas, who died of Aids in 1993, and Maureen Borthwick, who died in 2008 from a brain tumour.
Source - Carlisle News and Star
Permalink
Manchester Social Care Consultation
posted: 07/10/2008
Manchester city council is asking for your views on its plans to change the way social services manages care services for adults. The deadline for replies is 7 November.
There is a questionnaire to complete, some guidance notes and a social care guide You can download all of these from the links below.
They say:
Adult Social Care Service Consultation
We are currently making a number of improvements to the way we offer support to adults in Manchester.
Recent changes include:
- Introducing a reablement service focusing on helping people to regain their independence after an illness, accident or crisis. This service is provided free of charge.
- Offering individual budgets to all eligible customers increasing the choice and freedom in the way their care is provided.
- Introducing a new home care service to improve quality and customer focus.
We want to find out more about what people think about the services we offer and some of the changes we are considering. By filling in the consultation questionnaire, you can give us valuable feedback about our services and the way we charge for them.
You can also have the chance to win a £50 Marks and Spencer's Voucher in a free prize draw.
All responses will remain confidential and only summaries of the results will be published.
Please answer all questions in Sections 1 & 2. There are guidance notes to help you.
Filling in Section 3 is optional, but will help us to get a better understanding of the opinions of different groups of people. If you would like to be entered into the free prize draw for a chance of winning a £50 voucher, please also enter your name and contact details.
This questionnaire is available in other formats and languages on request. Please contact 0161 234 3880.
Please email your completed questionnaire by 7th November to: Promotionpublicity@manchester.gov.uk
Consultation questionnaire
Guidance Notes
Adult Social Care Guide (large file)
The direct link to the city council's adult social care consultation page is here.
Permalink