Still Miles to Go

There is nothing like looking, if you want to find something.
–The Hobbit, JRR Tolkien

I had to look back at my last post (which was just six short days ago) because so much has transpired over such a short time. Although there were some frightening periods, we have much to be grateful for. The most important is your support. It means so much to me to read notes of love and encouragement. I could not make it through those difficult times without it. Thank you, thank you, thank you!

I’ll try to go through looking and the finding of the last six days as methodically as possible, but there’s much I don’t remember, so I apologize for the holes.

Just minutes after I posted on the latest saga with the positive news that my fever broke, I spiked another fever at 102.3. Despite 2 different antibiotics. Despite round-the-clock Tylenol. Although the fever was miserable, it seemed the treatments finally took hold on Tuesday morning and I went fever-free for just over 24 hours prior to discharge. During that time, we saw the Infectious Disease (ID) doctor who told us the bacteria grew out as MSSA, or Methicillin-Sensitive Staphylococcus Aureus, which is far more favorable than the nasty MRSA, aka Methicillin-Resistant Staphylococcus Aureus. We thought we were in the clear. Although he clearly still wanted my port removed, I was able to doe-eye the hospitalist into allowing us to try to save it so that I could swim and enjoy the last three weeks of summer. We got our discharge papers on Wednesday afternoon and my home health nurse met us at home for a three-and-a-half-hour review.

I slept for 22 hours on Thursday, waking at 11pm to Keith violently shaking me telling me I’d been unresponsive and had been running a fever most of the day. Despite the IV antibiotics and Tylenol suppositories. He wanted to take me in to MGH immediately, but I was able to talk him in to one last good night’s sleep in my own bed. I’m not sure if it was the smartest decision – actually I’m pretty sure it wasn’t – but I was grateful for the sleep. I was still running a fever of 103.2 in the morning so we headed off to Mass General (not the local hospital) in the early afternoon.

In the Emergency Room, I just got sicker. This greatly concern the physicians. A dozen vials of blood were drawn in addition to cultures. I was sent for an x-ray which confirmed I was also harboring a good bit of pneumonia in my lungs. It was the fastest I’ve ever gotten a room. Unfortunately, that didn’t mean I got to sleep in it. Throughout the night, I had a CT scan of my brain, an ultrasound of my abdomen, a lumbar puncture, and at 5am, they pulled my beloved port-a-cath (my central line) and placed a PICC line (a temporary central line in my arm). They ran four different antibiotics throughout the night and the following day. Finally, in the late afternoon on Saturday, it seemed my fever had broken. I also went in for an MRI of the spine, neck, and brain. 19 more vials of blood were drawn. Today I had a consult from ophthalmology from Mass Eye and Ear across the street. And I’m still scheduled for an MRCP (Magnetic resonance cholangiopancreatography) to look more closely at my gallbladder, pancreas, and liver. It is exhausting keeping up with it all. From what I’ve gathered from Keith, I was so incredibly sick that they were/are nervous about missing something so they’re looking everywhere.  They are also hypervigilant because so much was missed during the five-day stay at Lowell General.

Unfortunately, the looking has be more fruitful than we had hoped. The findings so far:

• As previously noted, MSSA, or Methicillin-Sensitive Staphylococcus Aureus, was found rampant in my blood stream.  This is being treated by two different powerful IV antibiotics.  Staph Aureus is commonly found on the skin and there are many different ways it could have been introduced into my blood stream.  The current working theory is that the tube-change-gone-bad introduced the bacteria.
• Significant pneumonia was found in my right lung.  The current theory is that I aspirated (breathed in) when I was vomiting last week.  The bacteria from the vomit found an inviting home in my lung.  The antibiotics I am on for the blood infection are also treating the pneumonia.
• My pancreatic enzymes are five times higher than my baseline.  My base line is already three times higher than the upper limit for the “normal” pancreatic enzymes.  Yes, ladies and gents, my pancreatic enzymes are fifteen times what they should be.  My pancreatitis seems to flare whenever there’s any mild (or in this case more severe) trauma to my body.  The pancreatitis began before I was on TPN and we’ve tried to associate it with every medication I’ve been on, but it seems to be unrelated to anything external.  The conclusion made by my gastroenterologist: mitochondrial disease.
• For the first time, my gallbladder has shown significant “sludge” and stones.  Although the doctors don’t believe these to be causing the pancreatitis (since I’ve gotten flares long before I had any gallbladder involvement), they know it’s not helping.  They will be doing further studies on it to determine whether removal will help with either my pancreatitis, my abdominal pain, or both.
• My liver is showing signs of acute mild hepatitis, i.e. “inflammation of the liver.”  This is likely due to the blood infection.  Although my liver function tests are usually mildly elevated, this is the highest they’ve been and are cause for some mild concern.  Although my liver was impaired prior to the TPN, we know that the TPN is not helping.  Unfortunately, there aren’t many options as of now.  We are looking into getting a separate j-tube (currently, I have a single opening that has tubes reaching both my stomach and small intestine) further down in the intestine to see if I can tolerate enteral feeds better that way.  If that fails, however, we’re back in the same boat and I went through unnecessary surgery.
• We discovered this morning that my blood is also growing out yeast.  We are still waiting on complete cultures, but my ID doctors postulate that it is caused by my CIPO (Chronic Intestinal Pseudo-Obstruction).  CIPO has essentially shut down my gut.  As bacteria and yeast are found normally in the gut (they help break down your food) and mine have no where to do, they translocate (cross) through the bowel and enter my bloodstream.  A normal immune system and a normal body would simply fight them off.  I do not have a normal immune system, and because I rely on a central line, I do not have a normal body.  Like bacteria, the yeast latch on to the central line and are (literally) fed by the TPN that feeds me to keep me alive. I am now on an antifungal in addition to the two antibiotics and my PICC line that was placed just 26 hours prior was pulled.
• As I mentioned in my previous post, my white blood cells (known for fighting infection) do not respond to infection of any sort.  Through this entire saga, they have ranged from low-normal to normal.  This is characteristic of my body’s reaction to all documented infections I’ve had.  We don’t know why I have this response, but I do have an immunologist who is pushing for Immunoglobulin replacement therapy which will hopefully help my body mount a response to these scary infections.
• Finally, my primary care doctor always likes to have one item to put in the “win” column, no matter how small.  This one isn’t small: there was no sign of infection or inflammation in my brain, neck, or spine.  This was a huge concern of the doctors as I am experiencing an abnormal headache that we can’t seem to treat.  We can, however, rest easy knowing that we dodged this particular bullet.

It appears that I will be inpatient for the next 2-3 days as we wait for 48 hours of clear cultures so we can place a new temporary PICC line that will later (after 2-3 weeks of IV antibiotics and antifungals) be replaced by a new port.  In the meantime, I get to catch up on all the sleep missed while they were running all those tests.