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.

Monday, September 7, 2009

The Monster Within

I was born July 13, 1981. I came a month later than scheduled. Weighed 7 lbs 11 oz. I was a petite baby for my family. Like most parents, my mother was concerned about whether or not I had the correct number of fingers and toes. I had deep black eyes that would change to a chocolate brown in the following months. And I would eventually have a head full of brown curls. My mother described me as a cherub baby. I was named Solana, the Spanish word for sunshine.

Little did my family know, I was battling a monster. A monster that was inside me. A monster that I would be battling for the rest of my life.

My mother was a new parent. Since she had no comparison, it took her a while to realize that something was wrong with me. Though, I must say, she is one of the main reasons I am still alive today.

According to my mother, I was constantly starving. She could not supply me with enough milk to keep me satisfied. She probably felt pretty helpless, being awake all night listening to my cries of hunger. When I was about two or three months old, my mother went against conventional standards of the time. She started giving me formula and rice cereal at a very young age. She would make the formula, add the rice cereal to thicken it up. Then she would have to make a larger hole in the nipple so I could suck it out. According to my mother, I really liked the concoction she made me. At the time, this was considered taboo to start a child on formula and cereal at so young an age. My mother didn't know it then, but she had just taken the first of many steps necessary for my survival.

See, the main underlying problem in Cystic Fibrosis patients is that our bodies don't hang on to salt like they should. So a Cystic Fibrosis patient needs to consume a high level of salt to replace what is constantly lost. Breast milk supplies little to no salt to infants, whereas, formula does supply salt. So by switching me to formula, my mother had unknowingly ensured that I would receive some of the salt I was losing.

Because I kept getting sick, my mother became what most doctors consider an overly paranoid parent. The type of parent that brings her children in every time there's a sniffle or a sneeze. My mother knew something was wrong with me, but she just could not figure out what. She constantly took me to the doctor. It wasn't for a sniffle or a sneeze. She would take me in because my cold would turn into pneumonia or my food seemed to pass right through me. But the doctor kept sending me back home. He would tell my mother that children get sick, that my GI system wasn't fully developed yet, or that she wasn't feeding me the proper foods. I would guess that it was a hard time for my mother, knowing that something was wrong with her child, yet feeling helpless as to where to go for help.

Finally, when I was just over three years old, my body could no longer keep up the fight on its own. I had gotten sick again. I was extremely dehydrated, hallucinating, had broken out in a rash, had cradle cap (a sign of malnutrition). My mother too me to the doctor once again and once again he chose to send me home, but this time he threatened to turn my mother in for child negligence. Outside the doctor's office my body went into failure. I was rushed to the nearest emergency room which was Ridout Memorial Hospital (which is now part of the Fremont-Ridout Health Group).

The doctor who sent me home was at the hospital. He told my mother, "You just killed your daughter." Now that is the last thing a parent needs to hear during a crisis like that. My mother was already devastated, fearful, and feeling helpless at that time. Guilt was not needed to be added to the list. When it was found out what had made me so sick, that doctor was properly disciplined.

I was in such bad shape at the time that the hospital staff could not find a vein that would take an IV. They had to do what is called a "cut down" in my ankle. A "cut down" is when they cut into the skin to find a vein that is hiding. I still have a scar on my right ankle from it. I was in renal failure by then and was a very critical case.

When I had stabilized enough for transportation, I was airlifted to the UC Davis Medical Center in Sacramento, California. I have no memory of that helicopter ride, but I know that the crew (doctor, nurse, and respiratory therapist) worked very hard to keep me alive during that flight.
I was in a coma for about a week. Once I had been stabilized and awakened, doctors decided to find out what had made me so sick. They had several theories ranging from vitamin B deficiency to being allergic to sunlight. My family history was looked into for clues as to what was wrong with me. Lab tests were ordered to test each theory. I became a human pin cushion. The tests continued to come back negative, and the doctors were forced to consider other possibilities.

Finally, an intern suspected Cystic Fibrosis. She actually came in to ICU after hours to sit down and speak with my mother. She was the first medical professional to genuinely listen to my mother's concerns about my health. Since Cystic Fibrosis is genetic and there was no known family history of the disease, it wasn't originally tested for. But to be thorough, Cystic Fibrosis was added to the list of conditions to test for.

Testing for Cystic Fibrosis didn't require me to become a human pin cushion again. All that was needed was a sweat test (also known as a sodium chloride test). This type of test entailed my arms being wrapped and electrodes and sensors being placed on my skin. My arm was made to sweat and the sodium chloride levels were measured. I had a higher than norm level of sodium chloride in my sweat, meaning I had tested positive for Cystic Fibrosis.

In CF patients, cells are unable to properly bring chloride in. This extra chloride is expelled from the body by combining it with sodium and releasing it through sweat. This causes the sweat to to be extra salty.

My sweat is so salty that I actually have a thin layer of powdery salt on my skin whenever it's hot out. I'm literally a walking salt lick for the animals on the family ranch.

Chloride is actually needed for proper cellular function. When chloride is prevented from going into the cell, organs begin to have problems. Thick, sticky mucous develops in the lungs, making it a breeding ground for bacteria which leads to multiple lung infections. This mucous also blocks enzymes from getting to the intestines, causing malabsorption (lack of absorption of nutrients), which was why I was starving. And in most male with CF, the vas defrens don't develop, making them infertile.

So the monster inside me finally had a name. Doctors gave my mother a regime for keeping me healthy. They also told my mother that I wouldn't live past the age of seven. They didn't recognize a fighting spirit when they saw one.