Back Again

[Guest guest]

Hi everyone,

Just to let everyone know that I've been in hospital since 8/02 and just got out 2 days ago. Just like in March, I lost a lot of weight in a short time (148 to 130 in 2 weeks), spleen enlarged, liver enlarged, RBC down, WBC up, no appetite, looking quite horrible. My oncologist, once again, thought I may have the beginnings of lymphoma in the gut area, my primary doc (infectious disease doc) had no answers really either, since this was the same senario I went through in the spring, and no one could find anything.

I'm thrilled to say that I have, again, no lymphoma at all, so with the 2 weeks of hospital stay in March, and this stay, I can say 100% I have no lymphoma.

My primary decided to have biopsies done of liver and lymph nodes in area near liver, and I had my gall bladder removed while the surgeon was there (because of previous gall stones in May, it was best to just remove it) My surgeon decided to biopsy the gall bladder as well, and low and behold, after all the hospital stays, blood transfusions, biopsies, and 8 months of missed work, my docs think they know what has caused my problems. They found a microscopic parasite in my gall bladder and in biopsied liver tissue. My primary doc said that pathology can't tell exactly which parasite it is, so he's treating me for the "top three" that HIV+ people get (cryptosporidia to name one). I'm doing IV antibiotics at home with a RN through insurance, have increased Bactrim to twice daily for 30 days, and am on an antiparasitic med.

My worry point is that I recently got back to undetectable (<50) and had a boost in t cells to 303, but had to stop meds for 7 days in hospital because of surgery, vomiting, and the hospital had me on ice chips for 1 week because of gall bladder surgery. I hope that the 7 day drug holiday won't hurt me.

I guess lesson learned is to carefully, carefully wash veggies, drink only distilled or filtered water, and I even plan on avoiding swimming pools from now on, unless I can actually smell the chlorine. Yes, this has taught me to be absolutely meticulous with water and fruits and veggies.

I'm slowly regaining strenght and am staying with sis and brother-in-law for a week because my leg muscles atrophied in hospital and legs are a bit weak. Besides, I need the support of family and friends now.

And, yes, I will get better, regain my lost weight, and get back to work before September ends. I have a renewed spirit of optomism that I'll be OK, and "this too shall pass".

I can't check emails often here since I'm borrowing a puter, but give me a shout out!!

Take care everyone,

Orlando

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