Tuesday, February 10, 2009

The Hospital Fiasco

I'm in a weird mood today. The past few months have been really difficult yet really good in a lot of ways. My recent hospitalization just about did me in. I'm really quite traumatized by the whole experience. It's different when you are a nurse and suddenly forced to be a patient. You see things so differently and wonder what kind of nursing you take back to your patients. I've discovered one thing. I'm no longer the nurse I used to be. I don't want to be a nurse anymore. There, I said it. So here is the story of what happened with my health. I have fun homeschooling stuff to post later but for now, I need to write.

In August, I was diagnosed with Lyme Disease and Erlichiosis. The Erlichiosis is another lyme type disease all carried by ticks. I was put on a 6 week course of Doxyclycline yet while my symptoms improved initially, by the end of December I could barely walk due to muscle pain and the joint pain was so severe that it would leave me in tears. My brain was foggy-I was making mistakes at work, I was very irritable and would fall asleep at the drop of a hat yet was awake all night.

My primary MD wanted me to be seen at the Lyme clinic. Unfortunately, there was a four month wait to get in and the Doctor who ran the clinic was leaving. Continuity of care was iffy at best. While at work one night I ran into an Infectious Disease Doctor and picked his brain for a few minutes. Basically, he told me that there was no such thing as chronic lyme syndrome and I must have an underlying problem (as he alluded to a psychiatric disorder). I abruptly refused his offer to see me in his office, reamed him out a bit and scared him off.

I ended up calling another ID doc that I worked with at the hospital. She was great and started me on another course of doxycycline until I could get in to see her in her office. I called her New Years Eve and she saw me the day after New years. Once in her office she set me up with home IV therapy. Little did I know that my repeat bloodwork tested positive for Babesiosis also. Three tick borne illnesses. The plan was to do a 2-3 week course of the antibiotics and then reevaluate and repeat my bloodwork. One week into the therapy I had a full blown Herxheimer reaction where the lyme disease is dying off in massive quantities. It was horrible to feel this. My headache was incredible and even vicodin didn't help. My body was constantly twitching and spasming. I looked like I had Parkinson's disease. One contant tremor. The joint pain worsened, I never slept and could never ever get warm enough. One week into the meds I had a full blown allergic reaction to the Ceftriaxone that landed me in the Trauma room with a closing airway and being pumped full of steriods, epinephrine, Morphine and medicine for the sudden vomitting.

The ER wanted to send me home. I refused. The allergic reaction on top of the herxheimer reaction made all of my symptoms 10 times worse than they were. I had photophobia and double vision from the headache. Morphine, dilauded and vicodin didn't help the headache and I could barely move from the joint pain and my airway was still swollen. I was really scared.

Once in my room (it was supposed to be just overnight) I again asked for pain medicine. The team I was admitted to only wrote for Tylenol. I was in tears from pain and when the nurse came back in she said the doctor only said I could have 1 vicodin every six hours. I started yelling at this poor nurse to get a doctor in my room. No one came. My ID doc showed up a few minutes later and reordered all of my pain meds. By this time I was so upset I needed an icepack for my head and neck.

The next day the vomitting worsened and the plan was to start desensitizing me to the antibiotic so we could retry it for the lymes. But my headache was relentless and the doc decided to wait.

One of the medical Doctors came in to examine me the next day and asked when I was in CT. What? "You have Lyme disease-when were you in CT?" Yeah-cause RI is so far from CT and we don't have ticks here right? Good God. She didn't say much else to me except told me to eat (even though I was vomitting everything up) and left the room.

I called for more pain meds and guess what? Yup-she discontinued everything again. I was a screaming banchee, I called in the Clinical Manager, I called my husband and then paged my ID doc to my cell phone. Meds were reordered again.

Five days had gone by and Neurology finally came in to evalutate me. They recommended a lumbar puncture to check my Spinal fluid. But I would have to wait until the following week because they don't do Lp's and it would need to be done under flouroscopy. No such thing. I called the docs I work with and got it done that afternoon. Although the pain was excruciating and it took them 4 sticks to succeed. Two days later-the spinal headache hit.

Friday afternoon I went down for an ultrasound and found to have gallstones (from the antibiotics). When I got back to my room they restarted the antibiotics at a baby dose after loading me with steroids and benedryl. Within minutes I started to itch-I mean itch like fire ants were on me. I was bright red, my bloodpressure was thru the roof, I couldn't see straight and then my airway started to close again. The code cart was parked outside my room. I've never been on this end before. Epinephrine, massive doses of steroids for 3 days, benedryl around the clock, heart monitor, chest xray, cardiac enzymes. Medication for the vomitting and pain. I was so stoned and had no idea about time. My IV fluids were cranked up to 150 cc for 3 days. I was bloated with fluids.

The nurses were skeptical about my pain. They kept offering fioricet for pain and would lengthen out the time in responding to my call light. I waited 2 hours one time. A few were excellent and would alternate the vicodin with morphine with benedryl. I don't think I was a difficult patient. I asked for pain meds, linens so I could shower. I even disconnected my own IV to shower. I asked for an occasional ice bag and fresh water. Otherwise, they didn't need to do anything for me.

The next morning (my head ache was so severe that I slept out a response to being in such pain) I woke up to the right side of my face drooping, slurred speech and the entire right side of my body not having any feeling. I was vomitting the entire time and couldn't hold down anything. I called for the nurse who promptly told me that there was no morphine and I'd have to take the vicodin by mouth. They also told me that my face was not drooping. They paged the doc who did not return phone calls. I spent 4 hours laying in bed with no pain meds and no doctor even looking at me. I was crying the whole time. Truly, I think I passed out from pain.

When the medicine docs came in later, I was screaming at them. They were all very quiet, didn't say much and left the room. At least the morphine and vicodin were now ordered. I threw them all out of my room and told them when they could provide adequate care to come back.

In the meantime, my surgery was on hold because of the allergic reaction. I was finally scheduled for Tuesday to have my gallbladder out. But the surgeons never failed to remind me that I shouldn't be having this much abdominal pain because my gallbladder looked ok -it was just stones. Mind you I was vomitting around the clock.

Surgery didn't happen on Tuesday-I got bumped and had to wait until Wednesday. Thankfully, the vomitting stopped immediately and the general anesthesia took away my headache. Having my gallbladder out was the easiest part of my hospital stay.

It's taking me a long time to get my strength back. I had a lot of muscle wasting and my mind is still foggy but thankfully I have no more lyme symptoms. The exhaustion is still very profound at night but I am sleeping for the first time in over 6 months.

Being a patient taught me a lot. It taught me how we now do things to patients instead of for them. We don't listen to our patients. We don't listen to their pain and we assume as nurses that we have the answers. Many of the nurses and doctors who cared for me had no knowledge of Lyme disease, the headaches and pains, the Herxheimer reaction or how frustrating it was for me to find someone to treat me. Consequently, I'm still waiting to be seen at the Lyme clinic. Most of those who cared for me didn't bother to educate themselves on the disorder. One nurse did and asked a lot questions and printed out information for the other nurses. Just one.

One of my nurses said to me, "I have no idea what your diagnosis is-I can't even pronounce it." That makes me feel very safe. I'm home now and have to have weekly bloodwork done. I also aquired a c-diff infection that needed yet another antibiotic. My liver function tests and platelet count are still off the charts and they have no idea why. It is quite possible that I have suffered some permanent liver damage and need to follow up with a GI doctor.

I have a lot of thinking to do. What do you do with your life when you''ve been at something for 15 years and now can't bear to face it? How do you find that something that is calling you. There is a message and a lesson in all of this somewhere. I'll find it.

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Robin said...

Fellow homeschooler with chronic lyme as well. Contact me if you would like. I've been dealing with this for over a year and have used antibiotics as well as alternatives. Robin

homeschool mamma said...

Thanks so much. I've enjoyed all of your posts over at Life Without School-And have read your Lyme entry. It was like reading about me.
I am Symptom free at the moment and using some homepathic therapies to help maintain me. My heart goes out to anyone with Lyme.

3 and 1 said...

One of my friends e-mailed me a link to your site because she knows we are battling with lyme disease with my 3 year old daughter who was recently diagnosed. Your hospital fiasco made me laugh to keep from crying because I can feel your pain. We have had some situations as well with our battle with lyme disease and we can really relate with you. It seems we have much in common just from my brief time reading some of your blogs -- from the lyme disease to homeschooling to homesteading and the list goes on. Would love to learn more of your lyme disease experience and how you are doing now. Misty

homeschool mamma said...

Thanks-I couldn't find this message after I approved it and Allison just called and told me she gave you the link. I'm glad you enjoy the blog.