Getting In and Out of the Hospital Alive
Two issues ago, I wrote an article about my hospitalization for kidney sludge caused by Crixivan. There was one key sentence in that article:
"Fortunately, my doctor was working in the ER, so I went right in."
This is so significant because, getting into the hospital can be an incredibly frustrating, and if you are waiting in an emergency room, painful experience.
I hope you never, never have to be hospitalized. But, should that day should ever come, my advise is, appropriate the Boy Scouts' Motto: "Be Prepared."
If you have to go to the Emergency Room, it means that whatever is going on with you is so painful or urgent that you can't wait until the next day. You want attention immediately. I know of three ways to make that happen;
Unless you are visibly bleeding, chances are great that the person at the admitting desk will not see you as having emergency.
Chances are that person has almost no knowledge of AIDS, and will not understand the seriousness of your condition. That's the reason you should call an ambulance. The big red flashing lights on an ambulance and loud sirens scream out "we have a problem here!" You are taken in the back door, and are brought directly into the emergency room, not left to the uneducated discretion of the admitting clerk.
Even if you are able to drive, if you are alone, call an ambulance. If you are not alone, whoever takes you must stress the urgency of your problem. It will be all you can do to sit in a chair. You will be useless. "The squeaky wheel gets the grease" and in this case, the care and attention. One effective way to get out of the ER waiting room and into the area where you will be seen by a doctor is to have your advocate tell them that you have AIDS, and thus a weakened immune system. It is dangerous for you to be sitting in a waiting room with a bunch of people with all kinds of illnesses.
Keep pressing this point, it does work. They will take you back, and you will see a doctor sooner.
Unfortunately, unless the doctor is an HIV specialist, he or she will probably not know very much about HIV.
Two years ago, I went to the emergency room on Labor Day with diarrhea. The doctor ran some stool tests, but did not test for cryptosporidium, a common and quite serious cause of diarrhea for us. It wasn't until three days later, and I was much worse, that my HIV doctor ran the test for "crypto", which, of course, was the cause of the diarrhea. (Fortunately, my system cleared itself of the cryptosporidium in about a week, before it could kill me, which I was aware was a very strong possibility.)
Uninformed doctors can be a real problem. Have the person you are with impress on the doctor that you are HIV positive, and that the emergency room doctor needs to consult with an HIV specialist before they send you home with useless medication, or medications which might have adverse reactions with your HIV meds.
As in the Emergency Room, while you are in the hospital you'll need somebody to advocate for you: a lover, partner, friend, whoever.
Try to get a private room. You'll be woken up, poked, checked, taken out for tests often enough, you shouldn't have to be bothered by another patient's problems. Have your hospital advocate keep on the hospital about you having a private room. You don't know how long you'll be there, and you'll rest better and have visitors much more comfortably.
The people you will deal with most are the nurses. As in every profession, there are good, bad and average nurses. They are there to do a job. But they don't always check your chart, and they don't always know what is your particular problem. Scary, but true.
For instance, for the first three days of my hospitalization, the doctors just knew that my kidney was failing. They had me on an IV and wanted me to keep flushing with fluids. I couldn't eat anything because it would just come back up. So my doctor wrote in my chart that I could have ice chips. When I requested that I get some water, the nurse told me I couldn't have any....only ice chips. I tried to explain to her that ice chips are merely frozen water, which really confused her. Finally, after consulting with her supervisor, she refilled my pitcher of water. The next day I asked my doctor to please write in my chart that I could have water. I was much to sick to have to fight for it again.
Also, something I didn't learn until after I had been writhing in pain for three days. You have to ask for pain medication. Everybody kept asking me if I was in pain, to which I responded yes, yes, yes. I figured they never gave me anything for it because I couldn't have any medication because my kidneys were messed up. Wrong! I found out from the anesthesiologist who consulted with me before my surgery, that I could not just say I was in pain, I had to specifically ask for the pain medication. Which I promptly did. The nurse then brought me Tylenol, which doesn't work for me for anything. So I told her, "No, I need something stronger." She called my doctor and soon I was blissfully out of pain following a shot of Demerol. It was the first time I had slept in three days. Later, one of my doctors told me I had been so "stoic." Believe me, I never intended to be.
You, or your hospital advocate, must be vigilant in knowing what medications they are giving you and why. When I was first admitted to the hospital, my blood pressure was sky high. (Gee, I wonder why. Could the fact that my kidney wasn't working have something to do with it?) So they started to give me blood pressure medication. I told them I have never had a problem with my blood pressure. But western medicine likes to treat the symptom, not the problem. After the procedure to un-block my kidney, I felt better immediately. Yet, they kept giving me blood pressure medication. I asked my doctor if my blood pressure was still high. It wasn't. He stopped that medication.
After my doctor changed some other medications, a nurse came around that night with the old pills. I told her, no, I'm not taking those anymore. She checked my chart and came back with the correct medications. Of course, after my kidney was un-blocked, I was once again able to stay on top of my treatment. You really have to, if you want to survive your stay.
I left the hospital with a staph infection caused by the IV. So after I went home, I still had to take antibiotics to clear up the staph infection. It turned out I was allergic to the antibiotics and got sick from them. So when I say "survive a hospital stay," I mean it. You must not only survive whatever brought you there, you must survive the hospital itself.
This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.