It all started on Tuesday, January 18th in the afternoon. I had been out doing errands for about 5 hours and when I returned home I started to feel that familiar ache and fatigue and my neck began to feel sore; as if one of my lymph nodes was beginning to swell. By the next morning, the right side of my neck was huge and all I wanted to do was lay on the couch. That week my fevers spiked to 105.5, I began to cough with every slight irritation to the throat, and my ability to swallow diminished. I was not eating or drinking and became extremely dehydrated.
At the same time I started experimenting with cough suppressants because I was desperate to eat and drink. (Every time I tried to swallow fluid I would cough it up). By Friday I found Delsym, which was a very effective cough remedy, but had one minor side effect: hallucinations. I decided that would be better than coughing up everything I tried to eat or drink so I took it anyway. And hallucinate I did. I now understand what it is like to have someone talk to you who doesn't exist, and what it's like to want to talk back to that person. Most of the hallucinations happened at night, so now I couldn't sleep and I still couldn't eat because now the size of my neck was preventing me from swallowing properly.
By Monday I was too tired to walk, dehydrated, hungry, sleep deprived and delirious. Despite my stubborn ways I knew I needed to go to the ER. So that is where we (my loving parents and I) ended up on Monday afternoon (Jan 24th) around 1pm. To be honest, I was quite scared. I actually texted a friend of mine and asked her to pray for me. I was so scared. We found out that my blood pressure was about 50 over 30 (dangerously low) and I had a fever of about 105. I was sent to a university hospital nearby because they would have the specialists that were more familiar with my medical history. I don't remember much of the next 3 days except that the nurses in the ICU are so intense. They had 6 nurses on me at one point when I first arrived. I think they had me changed, bathed and attached to the fluids in about 35 seconds. The hallucinations kept my mind occupied for a few days. I was convinced that it was snowing in my hospital room.
So I was in the ICU for a few days while they got my blood pressure up with fluids, pumped me with antibiotics, and tested me for every infection under the sun. I had a CT scan which showed a swelling in my neck and little lumps in my lungs. I also had a very low white blood cell count. They did a lung biopsy, more blood tests, and a bone marrow biopsy.
As for the hallucinations, the doctor explained that because of my state of dehydration, giving me the cough syrup was like giving a child a triple dose. I had hallucinations for about 5 days after taking the medicine and as a result, I don't remember much of my stay in the ICU except that my brother was there for a bit, I saw movies playing on the walls, Indian villages on the wooden door of my room, insects and moths all over the place and I could hear beautiful music playing. It was a little frightening, but it kept me entertained anyway.
I was moved out of the ICU once my blood pressure went up and some of my tests came back negative, which was Wednesday night. That's when I start remembering things better. My first meal was steamed zucchini. At that point my white blood cell count had gone up to 50,000 which is ridiculously high. (It had been really really low upon admission). There were a lot of guesses as to what the diagnosis was...the doctors probably should not have shared them with me before they were sure. It would have spared me a lot of unnecessary fear and frustration for a few days. I cried a lot and just wanted to go home. I was pretty miserable there for a few days while they were just guessing and waiting for test results. On top of that I don't have very good veins and I had a total of 7 IV sites and about 12 blood draws, so my arms were pretty bruised.
Finally one doctor suggested doing another CT scan to see if the swelling in my neck had collected fluid that needed to be drained. It turned out that his guess was right and on Saturday my neck abscess was drained in an easy surgical procedure. My sister flew home for the day and stayed with me, feeding me and keeping me entertained :) The fluid from my neck was cultured and a non-resistant strain of Staph infection grew. My white blood cell count began to go down and the results from many of the tests including the bone marrow biopsy were all coming back negative. Good news finally! The only thing left to do was to let my neck heal, watch my blood counts and follow up on the lung lumps.
They finally put a PICC line in me which is basically an IV line that reaches about a foot into your vein, all the way to the large vein near your heart. You can leave this kind of line in for a few months at a time. I refused at first (who wouldn't?!!) but then realized that it was the only way they would let me go home and do the antibiotics there. So, I have a long tube going into my vein and straight to my heart right now. Blehghg. But, it was worth it because they sent me home finally on Friday, Feb. 4th.
This was going to be the end of my post, but it turns out that the abscess filled up with fluid again. By Monday the neck did not look so good, so I went in to have it checked and they decided to re-admit me to the hospital so that they could get me ahead of the line for a repeat CT scan. The scan showed fluid build up in the neck again. I had a repeat surgery the next day (February 8th) and right now I am recovering in my hospital room as I type this. I feel 100% better than I did after the last surgery, so I'm fairly certain that this will be the end of my time in the hospital for awhile.
The doctors are testing me for a disease that may have caused this to happen, but I can't remember the name of right now...it's long and mostly Latin. The results for that test will come back in about a week. They don't think that is definitely what caused this infection, but they want to rule it out. My theory is this: about a year ago my family doctor cultured a staph bug from my throat, but we never treated it with antibiotics because I didn't have any real symptoms and I am stubborn about antibiotics. So, there is a slight chance that the staph infection has just been sitting around in my body for awhile and due to my stress levels in January it finally became too strong for my immune system and grew into a large infection in my neck. I'm fine with never really knowing what caused this, all I want to do is go home and take care of myself even better than before. It is so frustrating to be in this hospital and eat the food that they think is building immunity when really it is making me weaker every day. And it is frustrating to be woken every 4 hours to have my blood pressure taken because I know that all my body needs right now is rest and sleep.
The doctor took the drain out of my neck this morning and told me that I can go home today or tomorrow, depending on what the surgeon says! Soon I will be at home, taking care of myself and getting back to everything I love. I can't wait to be back in my own bed :) And Spring is around the corner...which means fresh strawberries and spinach salads from the garden!
I want to thank my mother for spending most of her waking (and sleeping) hours with me over the past month, my father for being there with us and bringing me food, my brother and sister, my friends and my family who visited me, sent flowers, food and love while I was in the hospital. Thank you!