Wednesday, September 23, 2009

Four Walls and A Door

I am writing this from a hospital room. For once in my life, I'm not here for issues with Cystic Fibrosis. I'm here because of a virus. I went to clinic on Monday because I had flu-like symptoms. I kept running fevers, my nose was stuffed up, my muscles ached, my throat hurt. I felt like crap all over. I wasn't expecting to be sent here. I figured I'd go in to the doctor's and get some Tami-Flu and come back home. But the doctors didn't want to take the risk so they sent me over to the hospital.

Sort of sucked because I didn't bring anything with me. So I was bored for a couple of days. My mother brought my notebook to me today so now I'm back to my old habits.

I understand why I was sent to the hospital. The flu is no laughing matter and when you have CF it's cause for extra worry. Flu for CFers is dangerous. It can turn to pneumonia pretty quickly or it can weaken the body so much that the bugs that colonize our lungs will get out of control. The weakened state of our bodies can make it impossible to fight and the end result is not good.

So I'm here in the hospital, hooked up to an IV getting plenty of meds. I'm also under strict isolation. That means that when anyone wants to come in here they have to put on a special gown, mask, and gloves. I'm not allowed to leave this room. This is just a precaution since they don't know what virus I caught. They sent plenty of samples to the lab, now it's just the waiting game to find out. It's also because of the H1N1 virus. If I have that, well we don't want that being spread around. Definitely would not be a good thing.

Now I'm not writing this for people to feel bad for me. So far this bug is getting it's butt kicked. I stopped running fevers. I'm getting use of my nose back. My asthma is acting up, but that can be easily taken care of. And my CF is still behaving.

I am writing this, to give you a brief look at the hospital experience.

It all started when my sister got sick. We started taking precautions so I wouldn't get sick. We were spraying lysol all over the place. I wouldn't touch any dish she touched. My poor dog kept getting baths because he wouldn't stay away from her. My brother-in-law was the next one hit with the bug. By Saturday morning I was full blown sick. I didn't want to go to Urgent Care and deal with a doctor who had no idea about how to deal with a CF patient. And besides my sister and brother-in-law had gone and they received two different diagnosis. One was told it was a simple cold and the other was told that it was bronchitis. No way was I going to deal with people who didn't think that high fevers were cause for concern.

So I waited till Monday and went to the CF clinic and saw my own doctor. Of course that landed me in the hospital. One thing about being sent to the hospital from the clinic is that you're a priority. The bad thing is that if there isn't a room, you still have to wait. I went in to clinic at 1:30pm and a room wasn't ready until after 6pm. And the floor that the room is on deals with bone issues. So basically they don't have experience with CF patients.

The nurse who was assigned to me was a nightmare. He thought that he knew what was best and actually tried to argue with me. First he said that he needed to draw some blood because I was running a fever. I tried explaining that they took blood at the clinic, but he said it was protocol. He then refused to take it from my port saying that it would be "port blood" not sure how that would be any different since it's all my blood, regardless of location. He also tried to tell me that he has to take the blood from two different sites. So that started the argument of how my veins are not supposed to be accessed because of all the damage they gone through. He kept insisting so I told him he had one stick. Well, I have to say that that was a mistake. He put the tornicet on before setting up, so my hand started tingling. Then he tried to put the needle in without swabbing my arm first. And when I called him on it, he tried to argue with me saying that he did swab my arm. Then he finally sticks me. He missed the vein and actually tried to dig in my arm for it. After that I wouldn't let him try again. The nurse left the room.

When he was gone, I called the CF nurse's voicemail and left a message about what was going on. The male nurse came in with some other nurse just as I was finishing my message. I guess the nurse he brought in is good with dealing with problem patients, but they both left the room when they heard what I was saying on the phone.

About ten minutes later a doctor came in to talk to me. And the nurse stood in the doorway. I guess he was hoping to intimidate or hoping to listen to the doctor tell me I was wrong. Well that didn't happen. I told the doctor what was going on and the doctor agreed with me. He told the nurse that taking blood from my port was fine and not to try sticking me. To top it off, he gave me his number in case I had any more "questions". The nurse left and didn't come back for a couple of hours afterwards.

I haven't had that nurse since and I'm not complaining. I don't know what was said about me, but the rest of the nursing staff has been super nice to me. They answer my calls right away and bring me what I need quickly. My mother who is also a nurse says that when a patient constantly complains a note is made on the chart and that patient gets better treatment. That's because their afraid of a law suit and the vocal patients are the ones who are most likely to file one.

So if you ever find yourself in the hospital, be a vocal patient. Don't let hospital staff intimidate you into letting them do something that you aren't comfortable with. Now if only there was a way to get the hospital to serve better tasting food.

I do know that a lot of the issues when I come into the hospital is that nurses aren't used to dealing with CF patients. We don't have our own ward so we get scattered throughout the hospital. Basically anywhere that there's a room available. It sucks because I feel like everytime I go into the hospital I'm going to have to instruct the nurses on how my care is supposed to go. I do with that we had our own ward. Nurses would know how to deal with CF patients and wouldn't be so pushy. It's just easier when you deal with people who know about your condition and how to care for it. And it's much less stressful on the patient.

I know that UC Davis will never open a CF ward unless someone paid them to do it. And that won't be happening anytime soon. People are more likely to donate to Cancer or AIDS improvements than to CF. CF is still relatively unknown to people. Cancer is known by everyone because everybody knows someone who is affected by it. AIDS gets attention from celebrities and it received a lot of negative attention during the 80's. All that attention has helped push research in those fields to where it is now.

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