This is my 6th admission into the hospital in the last 4 years and my 6th admission ever in my life. So I like to consider myself blessed. Most CFers are in and out of the hospital at least twice a year from time of diagnosis.
I'll never forget my first admission, I was scared to death. I was 21 years old and my husband (boyfriend at the time) was at his annual national guard training in Mississippi I was gettng our things packed up to move to Angier. We had moved home to RR for the summer because I had just graduated from UNC-W and was going to start my Masters in Clinical Research then Pharmacy School at Campbell. All of a sudden I developed this sharp pain right under my sternum that radiated across my left lung. With each breath I took the pain would get worse and worse. It honestly felt like someone was stabbing a hundred ice pics into my chest. On a scale of 1-10, I would have rated it a 20... And if you know me at all, you know I'm a pretty tough cookie and I tend not to complain about aches and pains so I decided not to tell anyone. I kept telling myself I had pulled a muscle from cutting grass with the push mower the day before. I came up with every excuse in the book just because I didn't want to tell anyone and have them worry about me.
Well 2 days passed and the pain had only gotten worse. I would wake up in the middle of the night crying because it would hurt so bad. I was even taking cough suppressants to keep myself from coughing. Couging and yawning would shoot my pain score to a 50. If you know anything about CF, you know that cough suppressants are the worse thing for us. We have to cough to get the "gunk" out, if we don't it will settle in our lungs and attract bacteria. This bacteria then begins to multiply and the symptoms of lung infection start.
Anyways, I finally gave in and got in my car with tears streaming down my face and drove to my parents house. I am sure I scared the living day lights out of them by showing up at 3am but i didn't know what else to do. Mom got up and started to get dressed because she was determined to take me to the ER. I begged and pleaded for us to wait until in the morning and see if the pain would get better. And like I always did, I made excuses telling her I pulled a muscle and just needed time to heal. But that I wanted to stay with them because I don't know about any of you, but when I get sick or hurt, I want my mommy! haha Anyways that morning when we woke up the pain was still there so my mom called the CF clinic. Of course when something goes wrong, your physician that knows everything about your history isn't there. So mom had them to page the doctor on call.
When the physician called us back my mom went on to tell her my symptoms. When mom got off the phone she told me that we were going to the clinic and to pack a bag just in case they admitted me into the hospital. As soon as I heard the word "hospital" I wanted to run away screaming. Why in the world would I need to go into the hospital for a pulled muscle, that is stupid. What kind of doctor does this woman think she is. Anyways after realizing that there was no need in fighting my parents on this, I got my stuff together and we headed to Durham.
When I got there they took an X-ray because they thought I may have pneumothorax (collapsed lung). Thank goodness that wasn't the case. They then sent me to do PFTs. I was thinking, you have to be kidding me, I've already told you it hurts like hell when I breath and cough and now you want me to breath as hard as I can into a machine? But anyways, I didn't protest, I just went ahead to do as they said. Well needless to say that didn't go too well. When I went to blow out for them to test my FEV1, I fell onto the floor grabbing my chest and in tears. I thought I was in pain before, but now the pain was unbelievable. So they took me back to my examination room and we waited for the doctor. I think a thousand different nurses came in to check on me, asking me if I needed anything. But of course they couldn't give me anything for pain besides ibuprofen and acetaminophen because most pain medications contain codeine, and codeine is a cough suppressant.
Finally the physician came in and told me that she had looked at my xrays and there appeared to be alot of mucus plugs. Which means there were areas in my lungs that oxygen wasn't reaching because they were blocked by mucus. And that this could contribute to the pain I was experiencing. She then proceeded to tell me that she wanted to admit me into the hospital for IV antibiotics and around the clock monitoring. Scared to death not only of going into the hospital but also because my boyfriend was in Mississippi and I wanted him there with me. I was admitted that night and started on Piperacillin/Tazobactam (Zosyn) and Tobramycin because MSSA (Methicillin Susceptible Staph Aureus) and Psudomonas Aeruginosa were found in my sputum culture. After about 5 days in the hospital they released me on home IV antibiotics for an additional 9 days. Zosyn was scheduled every 6 hours and tobramycin every 12 so I had to set my alarms to make sure I never missed a dose. But I wasn't complaining bc anything was better than being in the hospital and getting woken up at 4 in the morning to get random blood drawn or stats taken or to weigh me. I mean is it really necessary to wake me up from dead sleep to weigh me, why can't you just wait until the morning? Well I spent those 9 days taking extra care of myself by exercising and eating high calorie high protein diet. And eventually that horrible pain went away once the oxygen reached those areas in my lungs.
I know you are thinking, why in the world are you eating high cal/protein? Well in CF, thick mucus blocks the passage of digestive enzymes from pancreas to the duodenum. These enzymes are responsible for breaking down and utilizing fats and proteins therefore, we can become malnourished. Therefore we have to take enzymes everytime we eat something that contains fats or proteins. We also tend to lose alot of weight when we get a lung infection because all of our nutrients are pretty much going to feed the nasty bacteria. They like for us to be "overweight" or in CF terms "healthy-weight." Up until this past year and a half I have been at my "healthy-weight" which was 140 pounds. But after getting extremely sick in 2008 I lost 38 pounds in 3 months. I am currently up to 110 pounds and trying my best to gain at least 10 more pounds so that the doctor doesn't give me a feeding tube. Cuz I mean, who wants a pharmacist with a feeding tube hanging out of them? Grossss!
Well anyways, I will go into detail later about how sick I have gotten in the past and how a couple of times I went to sleep praying that I wouldn't wake up in the morning. Yea, CF can play a toll on your mind. I know all you hear about is the respiratory, digestive, and reproductive involvement, but they never think to tell people that depression is often a factor. But like I said, I'll go into that on another day.
I am in the hospital today for my scheduled "tune-up" so that I will be healthy when school starts back next week and when my husband returns from Iraq in February. I was admitted at 6pm tonight and in the past 5 hours I have had a CXR (chest xray), 10 tubes of blood drawn, a nasal saline wash, albuterol treatment, 1 successful IV started after 3 sticks that consisted of digging into my veins (ughhh, man that hurts), a heart monitor placed on me with 5 leads that are irritating my skin, and they have the pulse-ox meter taped to my finger to monitor me tonight to see if I have sleep apnea. I have the usual bugs (staph and pseudomonas) which are both sensitive to most antibiotics, except for 2 of the 3 aminoglycosides -gent and amikacin. Thank goodness I am currently not having problems with resistance, lets hope it stays this way.
But anyways, they are still waiting on some blood cultures and to see if my aspergillus shows up again. Currently I don't have MRSA or any acid fast bacilli (Tuberculosis)THANK GOODNESS!! I owe my current success to the fact that I am a germ-a-phobe :) You can ask anyone that knows me, I am obsessed with hand sanitizer! I put it on everytime I touch something that I know someone else has touched and ALWAYS before I eat! People at school think I'm crazy, but they just don't understand that a simple 2 week cold to them can turn into a total nightmare for me that lasts for months!
Well I am going to try to get some sleep and I'll try to update you tomorrow after the round of doctors come through.
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