It is difficult to recall how this all began but it was somewhere around the birth of our second daughter Dylan in late April. After Julie’s cesarian her recovery never really ended. She had a few colds she could not shake and never seemed to regain her ability to exercise as we have always done.
Julie seemed overly fatigued, her lungs burned when running, and seemed generally not herself. Mostly we chalked it up to recovery. This was until August when she had a Bladder Infection. It seemed minor until almost through her prescription of cipiro she was informed she was on the wrong antibiotics and needed to be on ceftin. This took us into mid August and the infection seemed to have transformed into a kidney infection; based on our knowledge from internet searches. This “kidney infection” was horrible with lower back pain and high fevers etc. It got bad enough that we felt it necessary to head into the emergency room (weekend disease of course). After check in and rapid admittance (3.5hrs) Julie was tested and diagnosed not to have a kidney infection but rather something called pancytopenia (low blood counts/ white, red, and platelet).
This obviously caused a stir and on the following Monday took us to our Hemotologist/Oncologist Dr. Frakes. Julie was poked and proded having blood drawn almost daily trying to find and answer. It even sent her back to the same emergency room for a spinal tap to check for Meningitas. As you guessed she was negative. Julie was negative for everything. Finding no answers we were referred to an Infectious Disease specialist, Dr. Kuriyama. With a hefty consultation bill, a few more tests, and some general questioning it looked as if Julie did not fit the criteria for an infectious disease.
For a month or so that was it, “low blood counts is your life now Julie, bummer you are so tired all the time, try iron!”…etc, etc. She even recieved a bone marrow biopsy to check for cancer or if she was producing blood normally. Yup all good, no cancer, making the blood.
Then Julie got pnuemonia, the bad kind, full blown, fluid in both lungs, pnuemonia. Luckily she was A-symptomatic so she was not bed riden, but both our girls did get walking pnuemonia in their left lungs at the same time so it was rough. However this looked like an answer, CT scans showed that it has been in her lungs a while and would seem to be the problem she’s had with fatigue. She took augmentin, azithromycin, and levaquin. Guess what they didn’t work, shocking I know. This stumped the doctors into a bronchoscopy (sticking a tube down your throat with a camera to grab a sample). The results came out inflammed and foreign but unidentified by pathologists.
It’s February, Julie has had her “illness” since August, she gets blood drawn weekly, her counts are steadily low, looks like she has pnuemonia, and her bronch results are well, less than desirable.
New devolopment: Julie can feel when her counts go low and asks for a check to confirm this as it has happened of and on for months. The check with Dr. Frakes confims lower counts and upon consultation learns that Julies tongue is numb. WOW RED FLAG! Instant brain MRI from there. Bad news, legions on her cerebellum, boom she’s admitted into Scripps. Whirlwind hospital vistit for 8 days with another spinal tap, over 75 vials of blood drawn, a spinal MRI (legions there), chest cat scans (legions in lungs), ekg’s, the works. Dr. Frakes is in every day as well as Dr. Kuriyama, the addition of Dr. Oh and Chippendale (nuerology), Dr. Eisman (lungs), and Dr. Kaplan (rhuematology) all ordering tests daily.
Results: Not sure, looks like ADEM in the brain, possible mycoplasmas in lungs. Diagnosis? Kind of. Way to treat the problems?….nope. Best answer is azithromyacin (weird, didn’t work before), and 5,000mg of steroids, 1,000mg a day. Then we go home. Is she better? Not initially, the roids made her very out of it for a week. Second week she was super woman, although her face was still numb. Third week….uh oh.
Counts down again and whole face is numb now. Brain MRI shows legions are worse. Dr. Oh thinks its ok but may be more of a lung issue. Julie requests chest CT and boom legions in lungs and all over the spleen. Guess what we are back in the hospital.
We checked into the hospital on Friday 3/25 and agreed to a lung biopsy on Wednesday 3/30 to hopefully yield some good tissue and solve Julie’s illness. See the journal entries for updates from there.