Fiance in the hospital with PCP - TheBody.com's Bulletin Boards

First - congratulations! You're sticking by someone who is infected. This in itself is a hurdle many people can't seem to get over.

Second - support. EVERYONE who deals with this disease needs support at one time or another. The patients; the patients' family and friends; the caregivers. Everyone. Dealing with any disease can be traumatic. But, dealing with HIV can be more so because there is no one symptom to look for. No one rash, fever, cough, sneeze, or headache that is a sure sign of impending doom. Anything could be a result of HIV infection. Anything could be just something we get because we're human.

You need support. Be it one-on-one or in a group. Check with her HIV doctor's office to find out if there's a support group locally. I suggest this to most people, because at the group meetings the topics can vary widely. Most people who aren't HIV+ don't have an idea of how many questions can be brought up about our health and daily living. When you go you'll find that most other people there are HIV+. Get to know some of them. Ask them questions. If this isn't possible check where she goes for treatment to see if they have a case manager who can speak with both of you. To possibly answer questions you have.

I am a firm believer in staying away from "self prescribed" treatments. They may appear to make things better in the short term, but you still have to wake up the next morning and face reality.

As for the pentamidine - there may have been more than one reason to have used this. Am I reading correctly that she had an allergic reaction to it? If so, the hospital staff should make every effort to update her records to show this immediately. And, speaking of records if you're going to be this important in her life she should sign a waiver, so the medical staff can discuss her care and treamtment with you. An HIV patient's rights are strongly protected. In the right circumstances next to noone can be told anything without written consent.

With HIV different meds are sometimes used for standard treamtent than what other people may get. Interactions with the HIV meds she's taking. New allergies she may have developed (I became allergic to both sulfa and penicillan after starting HIV treatment). Or, general knowledge of how other HIV+ people have fared using the meds.

Yes, some of the meds are going to be toxic. But, they should be given at a level that allows her to take them without too many side effects. I had to wonder when I was in the hospital and the nurse came in with an IV. She had to wear gown and gloves to hook it up. Did I want to be getting this? As it turned out it was toxic. Moreso to the infection I had. It may have made me slightly ill, but it got rid of what it was supposed to get rid of.

The thing with HIV is trying to work all the meds we have to take and trying to decide when a side effect is bad enough to warrant changing or stopping the treatment. What's worse? A side effect for a couple months or delaying treatment? Unfortuantely, there is no good answer.

Or, perhaps the people at the hospital simply screwed up. I try to not look at this as a first option. But, it does happen.

Almost every county hospital I've ever seen is a teaching hospital. This is how doctors get experience. Medical students work there under the guidance of trained doctors. Unfortuantely, not all of the "trained" doctors are good themselves. Most HIV+ people learn to be proactive in taking care of themself. Not so easy to do when lieing in a hospital bed. This is why it's good to have a network of friends to help. Look out for her as you have been. Ask questions when you don't know or understand something.

Post Extras: Remind Me!