At home - the next chapter

12 June 2009

Dear Friends,

So many things have happened since my last post. The last time I celebrated the news that I was at last going home after months in hospital and then on the day I was supposed to go home, I received a call from my doctor saying that he wanted me to have the benefit of another 2 weeks of rehabilitation. Although I was a bit disappointed it turned out to be foresight on his part.

You see, I was so excited about not having the chronic pain and infection I lived with for the past 8 years, after the operations, that I was sure I’ve reached the end of my healing journey. However, during the extra time at the rehab centre, the pain spasms in my left leg returned.

At first we thought it might be triggered by the increased physical exercises I was doing and nerves and muscles waking up and me experiencing the discomfort that accompanies increasing capacity. It soon became clear that the pain was wound related as spasms were often triggered or eased when the wound sister cleaned the wounds.

So, the source of the pain is still a bit of a mystery, but we have now resolved to manage it with pain medication and give it time until the wounds have healed.

After my six weeks of intensive intravenous antibiotic treatment for the drug resistant strains of bacteria they discovered in the bone in the wounds, I was also excited about being free from infection after so many years. But unfortunately, being catheterised also means increased potential of bladder infection and so during the first week of my additional rehab time, I found myself back on oral antibiotics.

At the start of my last week of rehab, I woke up with a swollen leg. The sister called my GP and before I knew it I was on my way back to Vergelegen Medi-Clinic to get a sonar scan for a suspected deep vein thrombosis (DVT). So, just more than 4 months after first being admitted to the Medi Clinic, I found myself back in Ward G. The sonar showed no DVT, but my surgeon decided to keep me in hospital for a few days and give me some additional intravenous antibiotics to deal with whatever was causing the swelling in my left leg.

I arrived back at home on the 1st of June and have since just taken my time easing into the experience of being back in my own space again and trying to make sense of it all. During the first week I had some flashbacks to experiences in hospital, traumatic as well as funny and inspiring. The question that haunted me was: “What was the purpose of this experience, what was I supposed to learn from it and what should follow now?”

A stroke of insight
During my time at Medsac, the rehab facility, I met an amazing couple, a woman called Mavis, who is a stroke survivor and her husband Stan. Mavis had a severe stroke and there were times when doctors did not think she would make it, but Stan never gave up hope. I was so inspired by the love and commitment he showed by coming to exercise with her every morning at the rehab centre. Mavis is not yet able to talk or walk, but the first time I looked into her eyes I saw how she connected with me.

Stan introduced me to the book: “A stroke of insight” written by another stroke survivor called Jill Bolte Taylor. She was a neuro-anatomist or brain scientist who worked at the Harvard Brain Bank at the time when she had a stroke at age 37. In the book she shares about her amazing experience of consciously experiencing the stroke, losing most of her left brain capabilities and what helped her recover it again during an 8 year period.

Stan brought the book to me during my last week in hospital and I’ve been reading it since I’ve been home. It made me realise that I had to act on 2 impulses: one is to write a book about my experiences during my own healing journey and the other is to use the next 2-4 months of recovery time to start a campaign to bring Phage Therapy to South Africa.

Phage Therapy: the what and why
As shared in a previously, I was told by doctors in 2003 that they did not have a solution for the drug resistant form of bacterial bone infection I had and that I just had to manage it. However, both my GP and homeopath made it very clear that the level of infection I had could eventually cause organ failure. So, I worked with them to try and deal with the infection using homeopathic remedies and at times antibiotics.

In 2007 I saw a video about an alternative form of treatment called Phage Therapy which had a success rate of about 97% for dealing with drug resistant strains of infection like mine. I was planning to start a fundraising campaign to go for the treatment in Georgia near Russia, when I became critically ill and was admitted to hospital at the beginning of 2009.

Since being home, I’ve again developed some bladder and intestinal infection and am back on antibiotics. I was ready to move on, but I realise now there is a bigger picture here. As long as I am still recovering, I will be at risk of picking up new infections. I have a sense that the antibiotics are just repressing the infection and not really eradicating it fully. The fact is more and more people are developing drug resistant forms of infections (hospitals are full of them), so we need an alternative.

So, rather than seeing this as a set-back I’ve now chosen to see it as an opportunity. For my own healing and survival as well as those of many others (just think of all the people with HIV&AIDS that develop secondary infections), it is crucial to find alternative treatments. So, to tell you more about the wonder of Phage Therapy, I’ve created a blog (http://pagetherapytosouthafrica.blogspot.com/ ).

With the blog, I am initiating a campaign to explore bringing Phage Therapy to South Africa. By supporting me to raise the additional approximately R150 000 to cover the outstanding medical and my living costs for the next 4 months, you will also enable me to lobby the Health Minister to support this initiative.
I hope you will join me in this exciting adventure by visiting http://pagetherapytosouthafrica.blogspot.com/ .

Thank you so much for your wonderful support thus far.