After the latest ordeal of the past week, the weekend was pretty low key although I was still fighting bad headaches, dizziness, and general malaise. On Monday afternoon, a nurse from the hospital’s emergency department called to say that after four days, the spinal fluid culture came back positive for a bacteria called Streptococcus viridans. They wanted me to come back to the ER immediately. Upon arrival, an IV dose of the antibiotic Ceftriaxone was given along with 1000ml of saline. The doctor came in and said that they were admitting me to the hospital for meningitis which is a general term for an infection of the cerebral spinal fluid and tissues around the brain and spinal cord. This can be a very serious disease and this was the reason for admission. An infectious disease doctor came by to discuss my case. He indicated that this strep bacteria is commonly found on the skin, mouth, and nose and is rarely found in meningitis. He suspected that the original lumbar puncture of the myelogram from the previous week introduced the bacteria into the spinal fluid. While the number of bacteria found in the culture was low, the fact that I’m immunocompromised from taking Rituxan for RA caused the doctors to take an aggressive approach. The infectious disease doctor prescribed a course of IV treatment with the antibiotic Ceftriaxone. This began while in the hospital and requires two doses every 12 hours for 10 days. Fortunately, the IV infusion only takes 10-15 minutes. It was decided that I could be discharged after one sleepless night in the hospital (hospitals are not places to get a good night’s rest). But I would need to continue the IV antibiotics for the next nine days. Instead of returning to the infusion center twice a day, a peripherally inserted central catheter or PICC line was put in (see picture). This was a rather intense installation process as the catheter is put into a larger vein in your arm and the tube goes all the way to an area close to the heart. It involved a specialist nurse using ultrasound guidance and a sterile field in order to get the tube in the right place. The PICC line allows the patient to self-administer the medicine at home. A local speciality infusion pharmacy handled the prescription and a nurse came to my house with the medicine and supplies and spent over an hour teaching me how to safely administer the antibiotic. After self-injecting RA meds over the years, this process is fairly easy.
So an entire week of my life was devoted to a variety of medical processes and procedures. It all began with an attempt to image potential joint damage in my neck and lower spine and ended up with a serious infection. And it’s not quite over as I have an electromyography(EMG)/nerve conduction test with my neurologist tomorrow afternoon to check on the potential source of my muscle and nerve pain – the original reason for the myelogram. And then an appointment with the infectious disease doctor on June 4th to check progress and hopefully remove the PICC line. Such is life in the RA fast lane!
Posted in Uncategorized | Tagged Autoimmune disease, emergency room, hospital, immunocompromised, infection, infusion, PICC line, RA, treatment | 9 Comments »
The past few days have been a whirlwind of medical activity. Even after cervical surgery last year, I’ve experienced continuing pain in neck, shoulders, and arms along with number and tingling in the fingers. We knew that there were bone spurs pushing on nerve roots as they couldn’t remove those during the first surgery which was from the front (anterior). And a physical therapist working on my hips and legs suggested that some of the symptoms might be related to spinal nerve issues. So off to the neurosurgeon I went and he wanted to see the entire spine.
On Wednesday, I spent the entire day at the hospital from 6:30 a.m. to 4:30 p.m. This was a scheduled myelogram (injection of contrast), CT scan, and follow-up appointment with the neurosurgeon. The contrast injection is done by a radiologist under the guidance of x-ray machines called fluoroscopes. After three numbing lidocaine injections that were each deeper into the spine, he inserted a needle and slowly injected the iodine contrast into the cerebral spinal fluid (CSF) that bathes the spinal cord and brain. The table is rotated up and down to get the contrast to move around the entire spine. This process was relatively painless. I was then wheeled into a CT machine for a series of images. I then spent a few hours in a recovery area for observation before heading to the appointment with the surgeon. The images revealed the bone spurs in the neck and an additional herniated disc in the lumbar region. The surgeon recommended that surgery was not warranted for either situation. This is good news but fails to help with the bothersome symptoms. I have an electromyography/nerve conduction test with my neurologist later this week to try to find more answers.
Upon returning home that evening, a headache began to build. This was expected and I remained lying down as much as possible and drank plenty of fluids. The next day the headache pain became unbearable and excruciating upon standing or sitting upright. It was accompanied with ultra sensitivity to any stimuli along with dizziness. The pain was much worse than any migraine I’ve ever experienced. I finally called the radiology on-call number and the doctor immediately sent me to the emergency room where I was hooked up to an IV and given fluids along with Dilaudid narcotic pain medicine. The ER doctor suspected that I had a spinal fluid leak from the previous day’s puncture. But he had to rule out an infection – meningitis. In order to do that, he drew lots of blood and conducted another spinal puncture in order to draw CSF for testing. After about an hour the doctor came back and said that they found a small amount of white blood cells in the fluid where there should be none. He also said that if there was an infection, the white count would likely be in the thousands. He was in a quandary on what to do as a culture of the fluid would take 24-48 hours. So he gave me two heavy duty antibiotics which took over three hours to infuse. By then a microscope examination of the fluid showed no visible bacteria. After consulting an infectious disease, neurologist, internist, and anesthesiologist, the ER doctor decided that I likely did not have an infection, discharged me, and wanted me to come back the next day for a spinal blood patch.
After a fitful night of sleep, I returned to the hospital to the surgery center. I was in serious pain and could not sit in the waiting room. I threatened to lay down on the floor! I was taken to a procedure room and an anesthesiologist put in an IV and conducted a third spinal puncture. This time the needle went into the epidural space just outside the spinal cord. He then took out about 20 ml of my blood from the IV and then slowly injected it into the spine. When the blood clotted, it would form a patch over the hole that was leaking the CSF. I could feel the pressure build as the blood went in and pain began to form around the spinal cord and corresponding nerves into the hips and legs. This was actually the most intense pain of the three days and they injected a few doses of fentanyl narcotic. I had to lay flat on my back for two hours.
After about 36-48 hours, the pressure and pain in my head are slowly subsiding. It’s been a tough few days and I’m glad it’s behind me. Now to figure out what all is contributing to the continued pain, numbness, and muscle weakness and how to proceed.
Posted in Uncategorized | Tagged cerebral spinal fluid, cervical, CT scan, emergency room, lumbar, lumbar puncture, myelogram, pain, spinal cord, spine | 11 Comments »
May is National Arthritis Awareness Month. Please join the fight against arthritis by engaging some some advocacy activities. Below are some suggestions
- Change your social media avatar. Several are available at this rheumatoidarthritis.net site and one is posted below.
- Post a daily arthritis fact on your social media accounts. Several good examples are available at the sites below.
- Spread awareness to friends, family, and co-workers by sharing your experiences.
- Donate to a non-profit organization such as the Arthritis National Research Foundation (ANRF) or the American Autoimmune Related Diseases Association (AARDA).
Posted in Uncategorized | Leave a Comment »
For the 4th year in a row, my blog Living with Rheumatoid Arthritis was named by Healthline as one of the Best RA blogs for 2015. This is quite an honor to be listed amongst the other wonderful bloggers who tirelessly serve as patient advocates for this terrible autoimmune disease. Please take a moment to check out all of the blogs.
Posted in Uncategorized | Tagged blog, blogging, Healthline, patient advocacy, RA, rheumatoid arthritis | 6 Comments »
I am very honored to be named as a Cure Arthritis Ambassador for the Arthritis National Research Foundation (ANRF). The ANRF is a non-profit organization whose mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. They have been active for 40 years and have the highest possible rating by Charity Navigator.
As an Ambassador, I pledge to the following:
- – A commitment to arthritis research
- – A platform to share your efforts
- – The ability to demonstrate your involvement (Blog, Video, Speaking, etc.)
- – A personal connection to arthritis
- – To share in ANRF’s mission
- – Communication to ANRF about your activities in the fight to Cure Arthritis
Please consider donating and getting involved with this wonderful organization! Plus, they have really cool t-shirts and wristbands.
Posted in Uncategorized | Tagged ANRF, Arthritis National Research Foundation, non-profit organizations, patient advocacy | 10 Comments »
My Living With Rheumatoid Arthritis blog was featured by the Arthritis National Research Foundation (ANRF). The article also includes my story of fighting the disease. Click for the story.
Posted in Uncategorized | Tagged ANRF, Arthritis National Research Foundation, blog, RA, rheumatoid arthritis | Leave a Comment »