Still Miles to Go

This is far overdue. I have done such a poor job updating here (or anywhere for that matter) in the last few months. So much has happened and so much has changed – and is changing, daily – that it’s difficult for me to make sense of it all. It’s difficult to identify the meaningful moments and not get lost in the drudge of daily life. I’ve sat down so many times in the last couple of months to write an update, but the words are difficult to write and the ideas are so difficult to grasp.

As many of you know – and probably an equal number do not – one of my college degrees is in mathematics. The last few months have been scary and painful and disheartening in so many ways – and yet uplifting, encouraging, and reassuring in many other ways – that one of the only ways to make sense of this time is through numbers. Numbers don’t lie or change. Numbers have no biases or inert fear. Numbers just are.

So I figured that if the best way I could make sense of this time was through numbers and that the easiest way to share was through these numbers. So without further ado, the last few months. In numbers:

• Since August 13, 2011, I have spent a total of 65 days inpatient. That is over 3/4 of the last three months.
• There have been a total of 5 admissions. The longest admission was 36 days.
• I’ve spent time on 5 different floors. Six consecutive days were spent in the MICU (Medical Intensive Care Unit).
• I have encountered sepsis caused by 8 different bacteria and yeasts. Three times I went into severe septic shock. Twice they thought I wouldn’t make it.
• The highest fever I reached was 108.6 degrees. It resulted in a 6-minute seizure. Other than my typical brainwave slowing (evidence of my ongoing encephalopathy), I don’t have lasting brain damage other than mild episodes of confusion. I am very lucky.
• During the last three months, I’ve had acute failure of three different organs: my liver, my pancreas, and my heart. The lasting damage, thus far, has been relatively mild.
• I have been placed on 9 different antibiotics at a single time. They handed Keith a page with antibiotics listed and had him cross off all that I am either allergic to or with which I have adverse reactions. They placed me on all that remained.
• I have only been off antibiotics for 25 hours during the last three months. I then spiked a fever of 104 and was immediately placed back on antibiotics.
• The longest amount of time I’ve been home since mid-August is 13 days. The shortest amount of time is 4 days.
• Today, I returned to MGH – just four days after I was last discharged on November 2nd. Keith had to call 911 as my fever spiked to 104 (from 101.8) in about 40 minutes. I became unresponsive while vomiting bile and tremoring intensely. My heart rate was 180 beats/minute during this time. This is 2-3 times what it should be. I was taken to our local hospital to be stabilized and then transferred to MGH 90 minutes later. I am now stable and my fever is under control, while being monitored closely. My pancreas and liver are showing signs of acute failure. All of my liver function tests are quite elevated and my pancreatic enzymes are over 20 times higher than the upper limit of normal.
• The recurrent sepsis (bloodstream infection) is caused by two things: (1) an accumulation of “bad” bacteria in my colon which “translocates” (spreads from my colon to bloodstream); and, (2) a severe immune deficiency affecting my T-cells (white blood cells that recognize and remember antigens in the bloodstream).
• During one of the admissions, I had surgery to removed my gallbladder, which was inflamed and causing pain. During the surgery, I also had a tube placed directly into my small intestine. I now have two tubes on my abdomen: a gastrostomy tube (in my stomach, used for venting) and a jejunostomy tube (a tube in my small intestine, used for minimal medications and “trophic” feeds of 5 ml/hr, 4-8 hrs/day, 3-4 days/week).
• My “battle scar” from the surgery (an open cholecystectomy and j-tube placement) is 12 cm long and consists of 22 staples. It spans from my belly button to my lower rib cage.
• Due to my poor peripheral access, need for intravenous nutrition and medications, and rate at which I need to infuse fluids and medications, I can’t be without a central line longer than 2-3 days.Since August, I have had 10 different central lines (semi-permanent IV lines): 1 port-a-cath, 3 IJ lines, and 6 PICC lines.  The longest amount of time I was able to keep one was 15 days.  The shortest amount of time was less than 2 hours.  Port-a-caths can be permanent, PICC lines can usually last 6-12 months, and IJ lines can typically remain for up to 2-4 weeks.
• In the last three months, I have required 5 blood transfusions due to my extremely low blood counts.  Thank you, blood donors.
• While I was inpatient, our hometown (North Chelmsford) received 6-8 inches of snow and 80-90% of the town lost power. Our apartment lost power for over 48 hours. Luckily, we were unaffected as we were still inpatient. When I was discharged and home for 4 days, we still had 1-2 inches of snow. It made me smile.
• My mama traveled 3000 miles to come visit me while I was in the hospital. Twice. Definitely a “Best Mama Award”-winner.
• Other than the nights that my mom stayed with me, Keith spent every night by my side. 58 nights.
• The strength gained from the thoughts, prayers, and love sent and felt by our family, friends, family friends, acquaintances, and even complete strangers has been immeasurable. We remain strong because you fortify our strength. Thank you.