27 Move to Pittsburgh to await transplantAugust 2004
25-26 Transplant of small intestine; excellent recovery initially
30 Out of ICU to regular transplant floor (7 North)
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
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
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
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
3 Vacuum dressing applied to sacral pressure sore; weaning from Fentanyl
4 Yeast infection identified; purple foot from arterial spasm
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)
8 Returned to Children’s Hospital of Pittsburgh with pancreatitis
21 Line infection
9 Line infection conquered!
29 Home from the hospital!!! (Browns’ house) after 7 months inpatient!
29 ICU with sepsis
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!!
18 Back to Pittsburgh from Brazil
22 Hospitalized with line infection
11 Home from hospital; yellow from jaundice
11 Decision made to include liver in transplant (progressive, irreversible damage from TPN)
17-22 Hospitalized with line infection
22 Hospitalized with line infection
4 Home from hospital
11-25 Hospitalized with line infection (part of time in ICU)
12 Moved right foot for first time in over a year!!
14-17 Hospitalized for insertion of new central line
19-21 Hospitalized for pain management
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)
All month in ICU
2 Out of ICU to 7 North!!
27 Transferred from hospital to Children’s Institute (rehab hospital)
All month in rehab hospital
16 HOME!!! (after 5+ months inpatient!)
29 To Iowa for family reunion
6 Home (Pittsburgh) from Iowa
15-27 Hospitalized with line infection
20 Central line removed!!
16 Moved from Pittsburgh to South Bend, IN to start fall semester at Notre Dame
30 Bowel obstruction; life-flighted to Pittsburgh but resolved without surgery
3 Back to ND
19 Hospitalized in Pittsburgh with another bowel obstruction
5 MRI performed which showed Avascular Necrosis (not seen by orthopedist until Feb. 5)
26 Fainting episodes diagnosed as Dumping Syndrome
5 Informed of Avascular Necrosis (AVN) diagnosis
Began conservative treatment of AVN through Dr. Stulberg, orthopedist in Cleveland. Moved to handicap apartment; no weightbearing permitted (wheelchair dependent).
Completed junior year at Notre Dame
Immersion Arabic study in LaCrosse, WI
Began senior year at Notre Dame; right hip worse but continuing conservative treatment
Christmas in Brazil with entire family; visited Salvador and Natal (lifelong dream)
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
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.
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.
Replacement of right hip
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.
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
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
24 Distressed liver
25 Allowed to come home for Christmas afternoon
26 Back in hospital with high fever and jaundice
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
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
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!!
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
14 Popsicle traveled all the way through intestine—first transit since rejection began!
21 Biopsies some better
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!
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
12-14 Hospitalized with bowel obstruction, infection, dehydration
20 Biopsies better
28 Fell and cut knee; 10 stitches
31 Hospitalized overnight with tachycardia
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
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!
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, 2009only hospitalized 5 daysThe 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!!
Home all month!!!
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
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)
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
11-17 Hospitalized for intestinal obstruction
24 ER for stitches in knees after fall
14 ER for obstruction; to 11 North
17 Obstruction finally opening up
21 New central line due to infection
22 Home from the hospital
13-18 To South Bend for Valerie’s graduation from Notre Dame!
19-21 Hospitalized with obstruction
9 ER for stitches due to fall; hospitalized overnight
11 ER then hospitalized overnight after 30 stitches due to another fall
13 Readmitted due to intestinal obstruction
15 Home from hospital
3-7 Ambulance to ER with severe hypoglycemia and joint pain
8 Readmitted with bowel obstruction
12 Home from hospital
30 Hospitalized with infection in leg wound
3 Home from hospital
12 ER then hospitalized with injuries from fall playing frisbee
14 Home from hospital
17 Bad reaction to Benadryl at 7 West (no more Vancomycin!)
16 Prolia injection
17-25 Daily blood tests and electrolyte infusions at 7 West
26 Admitted to 11 North 4:00 am with electrolyte imbalance and severe diarrhea
4 Home from hospital
7-8 Hospital overnight with low blood pressure, electrolyte imbalance, mental confusion
25 Hospitalized overnight with infection in knee
29 Readmitted with line infection, confusion, not waking up; changed central line.
Diagnosed with PRES (Posterior Reversible Encephalopathy Syndrome)
3 Home from hospital
7-14 Hospitalized with severe intestinal obstruction
4-13 Hospitalized with double pneumonia and sinus infection
1-2 Hospitalized for rehydration; otherwise, HOME for 12 weeks!
8-9 Hospitalized with confusion and severe diarrhea
18 Restarted daily TPN due to weight loss of 10 lbs over 6 months
13-15 Hospitalized for confusion and ongoing diarrhea
28 ER for stitches in head after fall at home
29 Transplant friends Angie and Pauline died on same day
5 (Karis’s 28th birthday) Fell on the way home from Angie’s funeral; four open wounds, one not stitchable
12-14 Hospitalized after fall that opened shin from knee to ankle; required multiple blood products and skin graft
24-29 Hospitalized after fall that opened right knee; intestinal biopsies showed rejection
6 Skin graft on left leg
8-10 Hospitalized with ongoing bleeding after biopsies; rejection confirmed but not treated due to leg wounds
17 Switched from oral to IV steroids due to adrenal insufficiency
23 Prolia injection to strengthen bones required almost daily electrolyte infusions; leg wounds infected
30-8/1 Hospitalized with confusion, infected knee
Home all month but frequently confused; neuropsych testing performed
1 Biopsies look better but still mild rejection (apoptosis down from 11 to 6)
Neuropsych testing shows cognitive problems are reversible with hard work; begin cognitive rehab.
6-8 Hospitalized with bowel obstruction
9-11 Hospitalized with bleeding from biopsy site
16 Apoptosis down to 4
Mental status too fragile for Debbie to travel to Brazil as scheduled; did later travel 26-11/8
8-26 Hospitalized with line infections, adrenal insufficiency, confusion
11 Hospitalized with severe abdominal pain and diarrhea; fractured rib
15 Mild rejection in ileum, duodenum and jejunum treated with megadose of steroids; confusion
20 Rejection upgraded from mild to moderate
27 Bleeding from stoma; another line infection
31 Still bleeding from stoma
19-23 In ICU with septic shock, liver and kidney stress, intestinal bleeding, confusion
23 Moved to 11 N due to ICU psychosis; immediately calmed down
26 Bleeding stopped; another line infection; Dr. Costa: “I don’t think Karis is dying”
27 Full staff meeting to talk about end of life issues; chronic rejection
31 First time outdoors since 12/10/11
Series of infections
27 First time standing up since sepsis 1/19
5-30 Moved from 11 N to Rehab unit
30 HOME!!!! After 16 weeks in hospital (since 12/11/11) and all but two weeks since 11/8/11
3-6 Readmitted with electrolyte imbalance and stressed kidneys
24-26 Readmitted with pneumonia
Home all month!
Home all month!
23 Prolia injection, followed by 7 W every day for blood tests and infusions
2 Pneumonia, treated at home
11 TPN reduced from 16 to 12 hours/day
Home all month!
7-10 Hospitalized for line infection (after 19 weeks at home!)
2-9 Hospitalized with dehydration and fluid in and around lungs
8-11 Fall on steps, to ER then TICU with huge hematoma on leg; required 6 units of blood/plasma/cryo; therefore UNABLE TO TRAVEL TO BRAZIL FOR SISTER VALERIE’S WEDDING
11-December 7 Out of TICU to 12 North; complications from hematoma
17 Montefiore Hospital set up live streaming of Valerie and Cesar’s wedding, with a lovely “wedding reception” in the hospital auditorium!
7 Home from the hospital after a whole month inpatient!
12 Karis’ grandmother, Helen Ruth Elliott, went to Heaven
19-21 Traveled (on oxygen) to Oklahoma and Kansas for grandmother’s memorial service and interment
Other than one ER and frequent visits to 7W, home all month!
Home all month!!
11-18 Hospitalized with fever, dehydration, kidney issues
6-May 5 Hospitalized with hematoma from a fall, and pneumonia. Developed severe fluid overload and kidney failure. Stopped TPN.
5 Karis’ 30th birthday gift: HOME!!! After a month in the hospital!
9 Prolia injection: To 7W every morning for calcium infusions
17-23 Hospitalized with line infection and high blood pressure
Back to 7W every morning for calcium infusions
7W daily visits continue
13 Renal evaluation for kidney transplant–outcome: NO
24-25 ER/admission due to fall
Calcium beginning to stabilize
Occasional days NOT having to go to 7W for calcium!
11-15 Elliott family reunion, Laurel Highlands
1 Calcium NORMAL–first time since May 9!
5-9 Hospitalized with bowel obstruction and rotavirus
12 Admitted overnight for multiple infusions
31-Sept. 2 Travel to Indiana for cousin Michelle’s wedding
3-6 Hospitalized with high kidney numbers and other labs out of whack
9-20 Hospitalized again with unstable labs; cellulitis; restarted TPN
4-6 Traveled to Laurelville for annual church retreat
6 ER after fall at Laurelville
11-12 Admitted overnight after severe fall on treadmill; home for (rescheduled) Garden Party! Planted fruit cocktail tree.
12-21 Hospitalized with severe nausea, vomiting, diarrhea, and fever. Line infection and pneumonia.
20 Karis’ grandmother Gloria Madeleine Kornfield (“Abuelita”) went to Heaven
21-23 Kornfield family reunion in Pittsburgh
23-25 Hospitalized with dehydration
27-30 Hospitalized with dehydration and critical low phos (missed cousin Sarah’s wedding in State College)
13-Feb. 5 ER then TICU with line infection (missed planned vacation in Florida)
14 Transferred to floor
15 Evening started coughing/sore throat; considered a cold. Over next days diagnosis changed to pneumonia
20 Early morning transferred to TICU with difficulty breathing; placed on BiPap; considered “classic pneumonia,” on multiple antibiotics
21 BiPap inadequate; intubated and put on ventilator
24 Antibiotics not helping; consult to Infectious Diseases; flu swab and bronchoscopy performed
25 Diagnosis of H1N1 Influenza (swine flu); Tamiflu started to try to stop virus, but severe damage to lungs can’t be reversed
27 Kidneys stressed
29 Karis paralyzed and turned on her stomach; doesn’t help
31 Kidneys completely shut down
1 Family conference with doctors: not much more to be done
4 Special family time with Karis saying goodbye
5 Karis entered Heaven at 6:05 a.m.