Sunday, 9 March 2008

Health Update - Barry and Me - Still Medical HQ!

Barry is a LOT better . They seem to have found the 'right' antibiotic to deal with his current lung infection.

I think at this stage the trick is to deal with any opportunistic infections with the right drugs for the job so that you do not succumb to them - and in the meantime wait for the AIDs medication to take effect and build up your immune system so you can fight them for yourself again?

And he is able to breath much better and is off the oxygen, although we have to keep it around in case he needs it in the future.

But he still has several hospital appointments next week - the clinic and 2 CT scans, one for his lungs as they do not think they have yet got at the root of his breathing problems despite that he is feeling better and one for his stomach where I think he has to drink a barium meal - I have had theses in the past for my stomach problems due to food intolerance - and hate them! Poor Barry!

I have several hospital appointments too:

Ophthalmologist as my eyes are not good - they are truly causing me some problems and people with HIV can get many eye problems including a nasty bacteria called cytomegalovirus (CMV) so they have to check for this and other problems.

About 75% of AIDS (Acquired Immunodeficiency Syndrome) patients develop eye problems of some sort. The retina (the light-sensitive membrane at the back of the eye) is most commonly affected. Tiny retinal hemorrhages and cotton-wool spots are early signs of infection and are often detected during an eye exam. A cotton-wool spot, which looks white and fluffy, is caused by a circulatory disturbance in a tiny area of the retina. This disturbance may also cause small blood spots or hemorrhages. Since other diseases can produce the same findings, cotton-wool spots and tiny retinal hemorrhages are not diagnostic of AIDS

Infection of the retina with the cytomegalovirus (CMV) is more serious.
CMV is known as an opportunistic infection because it rarely causes disease except in people whose immune system is damaged. CMV kills retinal cells by moving from one cell to another. The entire retina may become involved within a period of two to three months. If the infection does not respond to treatment and is present in both eyes, it can lead to blindness. Other infections of the retina, including infections with the Herpes virus, the parasite Toxoplasma, and the fungus Candida, can also occur in AIDS patients.

Of course I am not classed as having AIDs - only HIV but my T-cells are pretty low and these problems can start before this i.e when your immune system is low and mine is low - and it is worrying me because my eyes are defiantly not right, I have been concerned about this and my skin for about 3 years but never got any answers - now at least I know!

I do not think I have any CMV - just the irritating problems caused by HIV of dry eyes, and I do know already that I have the beginnings of cataracts - the optician told me this last year. Not that unusual in a woman my age but can be escalated by HIV and probably has been.

Barry has had his eyes checked already and his are fine - but them we knew they were as unlike me he has no eye problems

I have a MIR scan booked and an appointment for a liver specialist and a ultra sound for kidneys, liver and ovaries etc. I also have to go to my doctor next week for hepatitis immunizations as HIV people are very prone to this - Bary had them through his job to work abroad so he does not need this.

I also have to see a skin specialist on Tuesday because I have psoriasis and very dry skin - again something that many HIV people suffer and I have had this badly for about 3 years. I know that this seems a lot of tests but it is apparently usual for HIV people to have loads of tests when first diagnosed to get a good picture of how much the HIV has damaged your body and to act as a 'base' line so if you get problems later they will know how it has progressed.

In a way it is comforting to know everything will be checked as I have suffered from my eyes and skin for about 3 years before I knew I had HIV and despite going to the doctor and the optician many times for both I was not offered any help reasons for it or treatment.

At least now I will get all the help they can offer. So I guess it is better to know you have HIV so at least theses things get treated?

It is good news on Barry's Job front - as he has told his company and they have been surprisingly very good as they have given him full pay until June and then something called 'leave pay' until late August so we now have plenty of time to sort out our finances and claim his pension.

Perhaps I take back what I said about his company Maersk? As both I am Barry thought they would sack him, or at least not continue his sick pay because he has a clause in his contract that he will conduct himself in a 'sober' 'proper' and responsible way while on company time and away at sea or even on shore, in a country that his company sent him too to work. The HIV clinic also warned us not to tell his work until we had to as they said he may be sacked!!

And somehow we were both worried that going to a drunken party in Brazil, having sex while drunk with a local woman and getting HIV - would not be considered 'proper conduct!'

This is a HUGE weight off our mind to be ill and have money worries is worse than being ill and not!!!
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