Many people have been following my somewhat ‘cryptic’ messages on facebook, trying to piece together what has happened to me. We still don’t have all of the answers and never will, but I’ve tried to piece together what happened so that everyone will have a better understanding, and Rob and I won’t have to repeat ourselves so much.
Wednesday March 14th I took the kids to the zoo and everything seemed like a normal day. The weather was a lot warmer than normal, but it was an enjoyable day and Rob had taken the day off, so we came home to have lunch with him. After lunch I felt exhausted, but didn’t think anything about it. I got all of the kids down for naps and spent the rest of the afternoon in the kitchen doing some meal prep for the rest of the week. The rest of the day seemed to go fine until we got to Bible class that evening. My head and my neck started hurting and I just didn’t feel quite right. In the middle of class I took Cullan down to the nursery and something just told my body that I knew I wouldn’t be able to carry him back up the stairs to class. So we tried to load up and leave as quickly after class as we could. I got home and took some Ibuprofen and went to bed.
Thursday March 15th, my neck and my head were hurting me all day. Rob was back at work and somehow I managed to make it through the day with all 3 kids. I tried Ibuprofen again Thursday and had no relief. Rob got home after 8 pm Thursday evening and I tried switching to Tylenol and going to bed. Still no relief and no sleep.
Friday March 16th, sometime during the middle of the night Thursday/early Friday morning my fingers started itching while I was trying to sleep. When I got up Friday morning I saw that I had some red bumps starting to form on my hands and wasn’t sure what had triggered them, but they were starting to itch. When I got in the shower I realized that the bottom of my feet were extremely itchy as well. I couldn’t stop rubbing them against the floor of the shower. I put lotion on my hands and feet to keep me from scratching and irritating them further. Rob took the day off to watch the kids while I tried to rest and get some sleep. I wasn’t actually able to get much rest on Friday because I couldn’t get my head and neck pain under control.
Saturday March 17th, first thing Saturday morning we decided to go to the urgent care center to get some pain medication and something for my hands and feet. By now the hands and feet are of little/no concern to me because they are not bothering me. The constant head/neck pain and 3 days of little/no sleep were my main concern, as well as having a fever of 101.3F. The staff at the urgent care center decided that I had an infection and gave me an antibiotic, a pain killer, and an ointment for my hands. I don’t remember much about the rest of Saturday, only that I don’t remember feeling much relief from the pain killer.
Sunday March 18th by now I haven’t slept in days and I have no pain tolerance left whatsoever. Rob couldn’t get me to eat anything and called our primary physician again to see what we should do. When they called back they wanted to know what my temperature was. It was now 103.9F, so they told Rob to take me to the hospital. I don’t remember a whole lot about the hospital that day. We went to Baptist Northeast since it’s the closest hospital, and I was back in a room by myself most of the day. They did a spinal tap to check for spinal meningitis, which came back negative. They did a blood pregnancy test, which came back positive. I think this is the point when the hospital staff was ready to get rid of me and transfer me to Baptist East. They called my ob/gyn at Baptist East and started getting things ready for a transport. In the meantime, Rob had taken the kids home to give them some dinner and pack some things for me because we knew that I was going to be observed overnight. Rob was surprised to find out that an ambulance transport was being arranged to transfer me to Baptist East. I remember begging the hospital staff to give me something to eat before I was transferred. I remember them finally bringing me a tray of food, but I have no idea what they brought me. I just scarfed it down and waited for my ride. So I got my first ambulance ride down to Baptist East, which was pretty uneventful.
Sunday March 20th/Monday March 19th - I was immediately taken to the ICU at Baptist East and was greeted by 5-6 nurses and a doctor. They started getting me settled into my room and ordering tests. The doctor told me that I was getting ready to endure a rough 24 hour period of no sleeping, eating, or drinking. They were going to be running a lot of tests on me and that it would probably be several weeks before I would be released from the hospital. Luckily, one of my nurses took pity on me and started feeding me ice chips because my throat felt so raw that I couldn’t even answer the doctors questions. I don’t really remember a whole lot about the next 12 hours or so. I know that Rob arrived around 9:45PM and started answering their questions, and I know that they took a couple of biopsies of the irritated skin on my left hand, as well as put a central line in my neck so that they could easily draw blood for all of their labs/tests and so that they could quickly administer any medicines. The ICU doctor explained to Rob that they weren’t sure what was causing my condition, so they were treating for all of the several causes that seemed to be a potential match; Rocky Mountain Spotted Fever, Bacterial Meningitis, general bacterial infection in my blood, and Lupus (or a similar vascular tissue issue of some sort similar to Lupus).
I’m not sure who all was brought in as a consult during this time. I know that along with the ICU docotor my ob/gyn was involved, my nephrologist, a hematologist, a dermatologist, and a rheumatologist. They started asking me a lot of questions about my Raynaud’s syndrome and about the rheumatologist that I had seen back in 2006. I didn’t bring any of this up, but Rob had mentioned my Raynaud condition to them, so that gave them some additional info to go on. Back in 2006 I was referred to a rheumatologist and was told that I have Raynaud’s syndrome, which is a condition where my blood vessels constrict and restrict blood flow to the extremities (mainly fingers and toes). I’ve been dealing with some Raynaud’s flare ups over the past few years, but nothing too extreme. During 2006 I was also told that I had a high ANA (anti-nuclear antibody) count, which is indicative of lupus. The Raynaud’s and the high ANA count are both lupus indicators, but the other lupus indicators were negative in 2006, so there was never a real diagnosis. With everything that was happening now, the first thought was that my lupus tendencies has been lying dormant for about 6 years and were now triggered by something. The first thought was that the “trigger” was the pregnancy.
My mom flew into town first thing Monday morning as well as my brother David. Rob’s dad and our brother in law Neil had come over to watch the kids Sunday night/Monday morning.
Tuesday March 20th - After days of testing, the lupus theory wasn’t completely confirmed. The second ICU doctor saw right away that my conditions did not match Rocky Mountain Spotted Fever, so they stopped treating me for that. They also said that they had found no indications of any bacterial infections, so spinal meningitis was also ruled out as a possibility. As such, they took me off of the remaining antibiotics they had been administering. I had the same two indicators that I had previously in 2006 – Raynaud’s and a really high ANA count, but most of the other lupus indicators came back negative, so the doctors were kind of stumped.
The ICU doctor explained to Rob that only for patients with vascular tissue ailments, they administer 10 times the normal dose of steroids for 3 days, to get the body back on track and to keep it from attacking itself, then they taper down to a regular dosage thereafter. The steroids were obviously helping to get my body back to normal, my neck and head pain was still kind of severe, but my hands and feet were starting to slowly improve. I was given morphine for the first 2 days and had really bad hallucinations. I asked to be taken off of the morphine and was put on another type of pain killer instead. The hallucinations went away, but I still had a hard time turning my mind off so that I could sleep.
Tuesday morning my blood pressure suddenly dropped drastically to approximately 48/35. A cardiologist team was rushed in, I was put on 2 different types of blood pressure medications, and I was closely monitored by them over the next few days as they tried to stabilize my heart rate and blood pressure. They did an echocardiogram that Tuesday morning, which indicated some heart muscle irritation, but things looked better when they repeated the echo test on Friday.
On Wednesday my ob/gyn performed an ultrasound to determine the extent of my pregnancy, which was considered to be at 5 ½ weeks at the most. Nothing conclusive was discovered and another ultrasound was to be scheduled in the next week to week and a half.
By Friday morning, both blood pressure medication IV drips had been tapered down and eventually eliminated, and by Friday evening, I had made enough progress to be transferred out of the ICU and into a vascular disease recovery room, usually reserved for post surgery patients. Over the next few days all of the various doctor groups continued to monitor my progress and slowly started making changes so that I could switch over to pill meds instead of IV meds with an ultimate goal of coming home.
I was released from the hospital Monday evening around 8:20PM. I am currently taking steroids to keep the lupus symptoms in check, am still on a heart medication to help continue strengthening my heart muscle, and a blood thinner to help prevent what the rheumatologist has called “micro clotting” in my blood. The blood thinner has been a big issue because of the pregnancy and what types I am allowed to take. So Rob was shown how to give me a shot and we were discharged with the understanding that he was to give me blood thinner shots twice a day.
Tuesday March 27th, I started my period, so the pregnancy wasn’t going to continue. Obviously we are saddened that this pregnancy is ending (6 ½ weeks), but we can also see how it is God’s plan for us right now. It makes my treatment options more black and white, because there is no longer a baby involved in the decision making process. So in that sense, there is some relief, to know that all of our decisions can be made with my best interest in mind and not having to juggle between me and the baby. On the other hand, we presently think that it is way too risky for me to try and ever get pregnant again, so we are adjusting to that realization as well, which is a hard concept for me to grasp at times.
We want to thank all of you for your prayers, cards, calls, visits and food. You have no idea how much you have helped us to get through this difficult time. I still have a long road to recovery ahead of me, with lots of upcoming doctors appointments as we still try to resolve things and regulate my levels. I will definitely be having a kidney biopsy in the near future, and maybe some other tests as well. It helps knowing that all of you are out there praying for us and keeping us in your thoughts. We love you all!
