Four years ago, on March 6th (yeah, I know I’m a little late – I have excuses) I started receiving formula through a feeding tube. This was a huge step for me, and my doctors. Don’t get me wrong, I never “wanted” a feeding tube or formula instead of eating but I knew I needed it. More than a few colleagues thought I needed it. But, we were a bunch of pediatricians – which get way more excited about preserving nutrition than the adult doctors. & I’m an adult (so I’ve been told several times, not consistently). I had lost ~30lbs in the last 2.5 months, had a few hospitalizations & lots of ER visits for hydration and electrolyte correction along with high heart rates & low blood pressures. Basically, I was starving & drying out. My efforts over the prior two months were observed in the hospital for several days – I’d try to drink fluids (& eat some light food) but nothing was staying down. At the time, we didn’t know what we know now (see intro page) so lots of folks thought (assumed) it would get better, quickly, but I just kept getting sicker. So, the tube – from the nose to the middle of my small intestines – was placed that day March 6, 2015, followed by a pump giving formula & water flushes. For those of you wondering, yes – I had a bit of refeeding syndrome.
To those of you there at this time in my life (CHCO residents, chiefs, faculty; Denver City Church buddies): THANK YOU!!!!
(not detailed, feel free to ask questions)
Mid January: ate a bagel with cream cheese that was from earlier that morning, got sick & never recovered (oh yeah, I was still on crutches from a hip repair that Nov)
February: barely survived a NICU call month (ask a doc, not fun) at Denver Health, several ER visits & a few hospital stays after finishing 30 hour shifts, basically it was hell but Kristen Wigby & I kept each other alive
March: duh!, started tube feeds that ran mostly overnight
April: a new feeding tube was placed in my abdomen, stomach to small intestines (a GJ), and no longer in the nose
June: somehow graduated residency on time?! (Do I owe someone money?)
September: developed gut infection, hospitalized for 2 weeks, put pediatric board study on hold; discovered I had Celiac disease & had to give up Cheez Its (still annoyed)
October: took the boards on a different day in a private freezing room right in view of the testing center entrance because I now had tube feeding that I didn’t anticipate in January when registering for the test.
Winter: started to improve, cut dairy out of my diet, switched formula to one made of real food (I know, what a concept) called Liquid Hope, thanks to a friend at church.
Spring: off all tube feeds!, met a new doctor who recognized the possible EDS and the antiphospholipid antibodies; we made a plan for “if” this kinda thing happened again (IVIG)
Summer: moved to NV, figured this gut stuff was behind me but kept my tube site in my abdomen “just in case,” planned a life of hiking, snowboarding and kayaking in the Lake Tahoe region
January 3: ate pho for dinner, went to small group, woke up that night with horrible pain & nausea
January 4: tried to work, had to go home, friend came over & quickly took me to the hospital. After several days of attempts (& hopes) of eating by mouth, we restarted tube feeds & I went home after ~ 2 wks.
January – April: assumed this was just the old issues reappearing. We tried the IVIG mentioned previously but it didn’t help.
June: travelled to Mayo Clinic with my parents, received official genetic diagnosis of hEDS, tried some treatment ideas set up by the GI experts there
September: due to continued weight loss, not able to restart tube feeding during a hospital stay, started TPN (IV nutrition)
October: developed sepsis (bacteria in my blood stream made me really sick)
December: worked my last shift as a pediatrician on the 31st
February – June: worked part time for the start of NV as a medical consultant for Social Security but could not manage to stay out of the hospital, though I was able to restart a small amount of tube feeding again
July: sold my house, hugged friends good bye & moved to NC, relatively healthy at this time
August: first hospitalization in NC
September: evacuated for a hurricane, hospitalized at UNC, got plugged in with higher level of speciality care there
November: another bout of sepsis
Nov – March: ~40 days in the hospital, but managed to get this blog going 🙂