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AIDS with KS and FSGS with NS
Mar 16, 2000

Dear Dr Feinberg,

Question 1 :

I have flat and raised red spots/lesions on my arms, legs, body, forehead, cheek, chin and buttock over a period of 9 months. There are lesions on my chest/lungs too. There are more than 50 lesions now and these lesions are growing and more lesions appear everyday for the past one week.

I also have brown raised lesions on both my armpits. There are 2 lesions on the upper hard portion of the mouth and 2 white lesions on the soft portion of both sides of the mouth. There is a raised lesion on my left eyelid too. There are many small red spots on the lower part of my tongue.

I am breathless and nauseates and there are mild swelling on my arms and legs. I have mild fever too. There are pains in the abdomen.

Dr Feinberg, do you think these lesions are disseminated Kaposi sarcoma ? Can you tell me in detail what will happen when these Kaposi sarcoma become larger and larger and more KS appear ? If the current available treatment fails, how long can I live ?

Question 2 :

I am considering whether should I let the disease progresses and kill me within a couple of months or should I seek medical treatment with my limited financial resources and live for another 2 or 3 years ?

In addition, I am a kidney patient (focal and segmental glomerulosclerosis with nephrotic syndrome) too. Currently, I have very sever protein loss of 21.9 grammes. I am taking Captopril 50 mg thrice a day. I have stopped taking Cyclosporin for 9 months as Cyclosporin will suppress the immune system.

Since I have AIDS with KS and FSGS with NS, it will be very difficult to manage the illnesses and the medications for AIDS tend to have many adverse effects on the kidney and cause kidney failure. So, on my own analysis, I will die either from AIDS or kidney failure as dialysis is not suited for AIDS patients.

DR Feinberg, should I seek medical treatment or should I let the disease progresses and let it kill me within a couple of months ? I come from a country whose government will not provide any financial help to AIDS patients and if I were to seek medical treatment with my limited financial resources converted into US dollars of US$20,000, how long can it last ? If I were to let the disease progresses and let it kill me within a couple of months, can you tell in detail how this will happen so that I can be prepared for it and plan to live and die peacefully and calmly.

Dr Feinberg, can you recommend books that tell how dying people face death calmly ie books that tell the psychology of the dying people especially AIDS patients toward death and how they learn to live and die calmly.

Thank you very much

AIDS with KS and FSGS with NS

Response from Dr. Feinberg

Unfortunately, much of what you describe does indeed sound like KS. Untreated (no medicine specific for the KS or no combination therapy to slow down your HIV disease), the KS lesions will increase in size and number. You may get more edema (swelling) of your legs from the KS blocking the flow of lymph from your feet to your lymph glands. I don't know if a chest X-ray has confirmed that you have lung lesions which might be KS or an OI. Your breathlessness concerns me that you do indeed have something -- whether it's KS or infection -- in your lungs. If you have pulmonary KS, your lifespan without treatment may be limited to months, rather than years.

The white lesions in your mouth sound like thrush, which is usually easy to treat.

Most HIV medicines do not harm the kidney. Only you can decide how to spend your resources and what ultimate decisions to make, but $20,000US could buy you about 2 years of potent combination HIV therapy at current US costs, and you may get longer-term benefit than 2 years. Just letting your KS progress may make you increasingly uncomfortable, with pain, swelling and increasing shortness of breath. Those are hard symptoms to live and die with peacefully, as you desire.

John G. Bartlett's book (available in paperback) called Living with AIDS (or something quite similar) is a good starting point, and you should be able to get additional directions to other emotional and practical resources from it.

I am sorry that it has taken me so long to answer your questions. I have tried on numerous occasions, but because the answer is long, my Internet service provider has cut me off mid-message on several occasions. I hope this one gets to you intact, and that it is of some help to you. Your situation is unenviable, and I wish you both luck and peace in your quest.


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