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Ms. Steven-Johan
I had my first DVT when I was in my mid thirties. One morning I woke up in agonising pain in my left calf. Being a very atheletic type, I decided
that I must have pulled a muscle and ignored it, hobbling around, using a walking stick. A few days later, again I woke up in agony, this time it
was my right calf. Deciding it was too much of a coincidence to have the exact pain in both calves I marched off to the doctor to get a check up.
I was immediately put into a wheel chair and admitted into the hospital.
At this point in my life I could not understand the fuss and protested. I was a successful businesswoman running the country's leading business magazine
and my schedules were so full that I actually worked every day into the early hours. My physician said I would need complete bed rest while I ws being
anti- coagulated. As soon as I was warded, pressure bandages were put on both my legs from ankle to thigh. I just thought everyone was over reacting. I
called my office and got them to move portable furniture from the office to my hospital room and continues to run my magazine from there. Eventually, I
was treated and discharged. No one thought it was anything more than a DVT.
Time went by, I was weaned off wafarin sodium and remained clot free for a while. Then it happened again. This time it was different. Each time they tried
to wean me off wafarin sodium, I would clot on the fourth day. It was odd enough for the doctor to order further tests. I was told the stress caused by
my job could be a factor, I sold my magazine.
Finally, in 1996 I was diagnosed with very acute PCD(Protein C Deficiency). My family was called and counselled, saying that I had a very acute deficiency
and it was miraculous that I was still alive with such perilously low levels of Protein C. When my dad was tested, he tested positive of PSD( Protein S
Deficiency) so I had to be tested again. Now I had PSD and PCD. I have two mutated genes and am classified as heterozygous. I was told I would need to
be on a permanent dose of wafarin sodium.
My husband took a pro-active view of the whole situation. He went out and bought me an internet ready computer, telling me to start researching altenative
ways to manage my condition.
I was fairly computer literate. In 1987 when I was getting ready to launch my magazine, desk top personal computers were making their debut. I had decided
I would employ this new technology to run my magazine, so the internet was just one step forward for me. I scoured the internet for information, but came
up with very little.
In the mean while my life was becoming hell. Wafarin sodium was not working. My INR could not be regulated as it fluctuated wildly, causing internal bleeding
at one point. I was told I needed to test regularly, so ever four days I needed to get the wafarin sodium adjusted. The hospital assigned their most skilled
staff to take my blood as I was running out of places for them to take blood from. Then I developed an adverse re-action to wafarin sodium. I developed
two patches of skin necrosis. I had to stop the medication and start LMWH(Low Molecular Weight Heparin) injections. They taught me how to self inject myself.
At this point I had lost all quality of life. I was stabbing myself with LMWH injections everywhere I could. My poor abdomen could only take so much so
my fore arms and thighs were also used. I used to joke with my husband that if I ever wanted to sue him I could take pictures of my body and no one would
doubt that I had been used as a punching bag. I was blue black and so badly bruised that even wearing clothes was a troture.
By now the internet was a hub of activity. One internet friend who was battling to give quality of life to her young daughter, born with diabeties, sent
me a research paper on a controlled study group. According to the study, if a magnesium supplement was utilised, it enhanced the function of the pancreas.
I was very excited. I did more research and discovered that if the pancreas could produce the required enzymes then the livier could manufacture the required
proteins.
Thus began my journey into holistic medicine. I started by taking a magnesium supplement to jump start my pancreas. I took milk thistle for my liver and
chinese southern ginseng to "thin" the blood. I also learnt that foods rich in Vitamin K could affect me. I changed my diet and eleminated all
foods rich in Vitamin K. I also learnt that we could take a variable dose of Vitamin E, anything from 400 i.u. to 3,500 i.u. and that it acted in a similar
manner to wafarin sodium.Wafarin sodium acts by blocking the Vitamin K factor of the blood, thus preventing the blood from clotting. Vitamin E negates
the Vitamin K factor. I was also told goat's milk tablets would thin the blood naturally, so I took that as well.
Through all this time, I continued with my LMWH injections, getting my blood tested for PSD and PCD every few months. Finally, after about three years,
my Protein C and Protein S levels came within normal range. I had managed to cure myself! I still get an occasional clot and treat it with LMWH injections,
usually if I am under extreme stress. Other than that, I remain fine. I continue to take a variable dose of Vitamin E. I continue to control my diet. I
have not given up my lifestyle which includes exercising, either running or brisk walking every morning. I am now fifty two years old, 5'7" tall
and weigh 72kg. I do weight training three times a week and remain in good physical condition.