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March 2004
27 Move to Pittsburgh to await transplant
August 2004
25-26 Transplant of small intestine; excellent recovery initially
30 Out of ICU to regular transplant floor (7 North)
September 2004
5-15 Rejection, successfully treated with steroids and 10 doses of OKT3
16 First day able to eat!
23 Viewed old intestine; went home! (Battle and Carol Brown's house)
28 Endoscopy showed rejection; returned to 7 North for steroid treatment
October 2004
4 Rejection worse; EBV discovered; Thymoglobulin not effective so back to OKT3
23 On a pass from hospital, visited Pittsburgh Conservatory where contracted Legionnaire’s Disease (identified Nov. 5)
26 Rejection worse; adenovirus identified in intestine; back on full-calorie TPN
November 2004
2 Blood sugar 511; went out to vote then straight back to bed; started coughing during the night with increasing shortness of breath
4 Endoscopy and bronchoscopy in OR; intubated; ICU on ventilator; immunosuppression stopped
5 Almost died from bilateral pneumonia (Legionnaire's Disease); on oscillator
10 Surgery to remove transplanted intestine
December 2004
4 Extubated!
6 Sat in wheelchair! Making progress toward leaving ICU
12 Re-intubated with another pneumonia in right lung
14 Condition worsening; in both lungs; pneumonia identified as CMV
30-31 High fevers (up to 41.3o); beginning to wake up; progress on weaning from ventilator
January 2005
3 Vacuum dressing applied to sacral pressure sore; weaning from Fentanyl
4 Yeast infection identified; purple foot from arterial spasm
8 Extubated!
11 Sat in wheelchair ½ hour
16 Out of ICU, to 7 North (after 74 days in ICU, most of it unconscious)
31 Moved to rehab hospital (The Children's Institute)
February 2005
8 Returned to Children's Hospital of Pittsburgh with pancreatitis
21 Line infection
March 2005
9 Line infection conquered!
29 Home from the hospital!!! (Browns' house) after 7 months inpatient!
April 2005
29 ICU with sepsis
May 2005
4 Out of ICU
9 Home from hospital. On transplant list for small bowel, stomach, pancreas
10-15 Visit to ND for classmates’ graduation
18 Home to Brazil!!
June 2005
18 Back to Pittsburgh from Brazil
22 Hospitalized with line infection
July 2005
11 Home from hospital; yellow from jaundice
August 2005
11 Decision made to include liver in transplant (progressive, irreversible damage from TPN)
17-22 Hospitalized with line infection
September 2005
22 Hospitalized with line infection
October 2005
4 Home from hospital
November 2005
11-25 Hospitalized with line infection (part of time in ICU)
12 Moved right foot for first time in over a year!!
December 2005
14-17 Hospitalized for insertion of new central line
19-21 Hospitalized for pain management
January 2006
7 Hospitalized with line infection; docs think liver damage so severe she may have 3 months to live without transplant
10-11 Transplant!!! (small bowel, duodenum, stomach, pancreas, liver)
February 2006
All month in ICU
March 2006
2 Out of ICU to 7 North!!
April 2006
27 Transferred from hospital to Children’s Institute (rehab hospital)
May 2006
All month in rehab hospital
June 2006
16 HOME!!! (after 5+ months inpatient!)
29 To Iowa for family reunion
July 2006
6 Home (Pittsburgh) from Iowa
15-27 Hospitalized with line infection
20 Central line removed!!
August 2006
16 Moved from Pittsburgh to South Bend, IN to start fall semester at Notre Dame
September 2006
30 Bowel obstruction; life-flighted to Pittsburgh but resolved without surgery
October 2006
3 Back to ND
December 2006
19 Hospitalized in Pittsburgh with another bowel obstruction
January 2007
5 MRI performed which showed Avascular Necrosis (not seen by orthopedist until Feb. 5)
26 Fainting episodes diagnosed as Dumping Syndrome
February 2007
5 Informed of Avascular Necrosis (AVN) diagnosis
March 2007
Began conservative treatment of AVN through Dr. Stulberg, orthopedist in Cleveland. Moved to handicap apartment; no weightbearing permitted (wheelchair dependent).
May 2007
Completed junior year at Notre Dame
June-August 2007
Immersion Arabic study in LaCrosse, WI
August 2007
Began senior year at Notre Dame; right hip worse but continuing conservative treatment
December 2007
Christmas in Brazil with entire family; visited Salvador and Natal (lifelong dream)
January 2008
Transferred from Children’s Hospital to adult transplant team at Montefiore Hospital, led by Dr. Kareem Abu-Elmagd. Hip worse; replacement planned for May after college graduation
February 2008
MRI shows right hip starting to collapse. Rest of term marked by intense pain, difficulty sleeping, periodic hospitalizations for bowel obstruction and/or dehydration. Very difficult semester.
May 2008
Karis is allowed to participate in ND commencement ceremonies but still needs to complete her honors thesis. Emergency move back to Pittsburgh night of graduation because of celiac artery blood clot. Rest of summer complicated by intense pain, abdominal problems, and infections.
July 2008
Replacement of right hip
September 2008
14-hour abdominal surgery due to repeated bowel obstructions caused by adhesions. Closed tummy muscles and reversed ostomy. Recuperation complicated by adrenal insufficiency, pneumonia, pleural effusion, bowel obstructions and dehydration.
October 25 — November 2, 2008
Traveled to Oklahoma to say goodbye to granddad Elliott fighting metastatic cancer.
November 2008
2 Emergency flight back to Pittsburgh with fever, intense pain, bloody stool. Infection in lower bowel; severe ulceration in 8 in. of remaining native colon, which spread into transplanted ileum
12 Rejection; started OKT3 and Solu-Medrol — (Granddad Elliott dies in OK.)
13 Endoscopy shows ulceration throughout intestine, top to bottom
18 EBV count >1 million; anti-rejection treatment stopped to treat this infection — (Granddad Kornfield dies in FL.)
19 Began Rituximab to try to treat rejection and EBV infection at same time
21 No more active rejection! Ulcerated intestine still needs to heal.
27 Pneumatosis; Thanksgiving dinner: popsicle
December 2008
2 Released from hospital!
6 Back to hospital with bloody stool
11 Colon healed; ileum still ulcerated & bloody
13 Fever & bowel obstruction; suspect fungal infection
21 Pneumonia
24 Distressed liver
25 Allowed to come home for Christmas afternoon
26 Back in hospital with high fever and jaundice
January 2009
2 Sat up in bed and smiled!!
4 Weight down 18 lbs.; considering surgery to restore ileostomy
6 Dehydrated, without IV access adequate to rehydrate
7 Placement of central line through back (trans-lumbar)
11 Three-year anniversary since multi-visceral transplant!
15 Trans-lumbar catheter accidentally cut
16 Placement of new trans-lumbar took 3 hours; mental confusion
18 Seizures; to ICU, on respirator (due to high Prograf level)
19 MRI shows generalized swelling of brain & bleeding in 2 small areas; stopped anti-coagulation therapy
20 Extubated
22 Back to 12 North
25 Large dose Solu-Medrol for possible rejection
30 Deep vein thrombosis in both legs and clot at end of catheter; resumed anticoagulation therapy
February 2009
2 MRI of brain shows much improvement
5 8 ½ hr surgery to create new ostomy; discovery of new ulceration in intestine, which explains weeks of pain, diarrhea, & fevers
7 Biopsies show lining of jejeunum completely stripped; no crypt cells left
13 Out of ICU!!
March 2009
3 Released from hospital (In last 6 months—since surgery Sept. 3—hospitalized all but 37 days)
9 Outpatient removal of J-tube and trans-lumbar catheter; THAT NIGHT returned to hospital with dehydration; transferred to ICU in septic shock
10 Insertion of trans-hepatic central line (through liver)
11 Biopsies show rejection
17 OKT3 initiated for severe rejection
19 From results of biopsies, little hope of saving intestine; very sick; family called to Pittsburgh; process begun to list for re-transplant of bowel
30 Out of ICU to 12 North
April 2009
14 Popsicle traveled all the way through intestine—first transit since rejection began!
21 Biopsies some better
May 2009
4 Biopsies look “terrible”
12 Home from hospital! (first time since March 3-9; before that, Christmas Day)
26 Scope and biopsies NORMAL!! Docs call this miraculous!
June 2009
1-2 Hospitalized with bowel obstruction
4 Ortho appt due to pain in hips; test for infection in bones negative
8-19 Hospitalized with bowel obstruction & clot in line (ICU until 13th)
21 Lost consciousness with blood sugar of 21
28 Surgical wounds from September finally closed!!
29 Steroid treatment begun for suspected rejection
July 2009
12-14 Hospitalized with bowel obstruction, infection, dehydration
20 Biopsies better
28 Fell and cut knee; 10 stitches
31 Hospitalized overnight with tachycardia
August 2009
3 Reached weight goal (105 lbs.); stopped TPN!
10 Knee infected
11-13 Hospitalized with dehydration and cellulitis from infected knee
28 Trans-hepatic catheter removed due to repeated episodes of tachycardia
September 2009
3-10 Trip to Notre Dame
11 Admitted to ICU in septic shock; on respirator for pneumonia
13 Began 4-day treatment with Xigris to try to save her life (Adult Respiratory Distress Syndrome)
15 looks like she will survive pneumonia and ARDS!
20 Extubated!!
October 2009
1 Out of ICU to 12 North
7 Successful placement of PICC in right arm (formerly considered impossible!)
12-15 ICU with bleed from biopsies
17 Home from hospital, without TPN!
Trivia: From Sept. 3, 2008—Sept. 3, 2009, Karis spent 221 days in the hospital (144 days home).
Worst period: Dec. 12, 2008—May 12, 2009 only home 9 days
Best period: June 19—Sept. 11, 2009 only hospitalized 5 days
The pneumonia/ARDS (9/11-10/17) has been her only MAJOR problem this semester! She has not been treated for rejection since June/July (and that one was outpatient). This is very encouraging!!
November 2009
Home all month!!!
December 2009
Karis set a record: 7 weeks straight at home!
6 Hospitalized with bowel obstruction and sepsis (ICU)
15 Home from the hospital
Christmas at home with whole family
30 flew to Maine to be bridesmaid in college roommate’s wedding
January 2010
2 ER at Central Maine Medical Center with bowel obstruction; admitted to hospital there because blizzard prevented transport back to Pittsburgh; missed the wedding; to ICU with sepsis (gram negative infecton of central line).
5 Flown by air ambulance from Lewiston, Maine to Pittsburgh (ICU).
10-11 FOUR-YEAR ANNIVERSARY OF MULTI-VISCERAL TRANSPLANT!
13 Home from the hospital
19 Fell and split open left knee, similar to fall in July, 2009
20 Put back on TPN because of weight loss and weakness
23 Obstruction that resolved on its own without hospitalization
31 Able to walk down aisle in Vera and Ryan’s wedding (with Hannah’s help)
February 2010
11 Fell and opened new laceration on knee, six more stitches. Hospitalized with obstruction
12 To ICU with sepsis (gram negative line infection, aspiration pneumonia)
16 Out of ICU to 11 North
20 Home from the hospital
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