Transplant Timeline

March 2004
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)

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
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
Almost died from bilateral pneumonia (Legionnaire’s Disease); on oscillator
10 Surgery to remove transplanted intestine

December 2004
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
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
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, 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!!


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

March 2010
11-17 Hospitalized for intestinal obstruction
24 ER for stitches in knees after fall

April 2010
14 ER for obstruction; to 11 North
17 Obstruction finally opening up
21 New central line due to infection
22 Home from the hospital

May 2010
13-18 To South Bend for Valerie’s graduation from Notre Dame!
19-21 Hospitalized with obstruction

June 2010
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

July 2010
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

August 2010
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!)

September 2010
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

October 2010
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)

November 2010
3 Home from hospital
7-14 Hospitalized with severe intestinal obstruction

December 2010
4-13 Hospitalized with double pneumonia and sinus infection

January 2011
1-2 Hospitalized for rehydration; otherwise, HOME for 12 weeks!

March 2011
8-9 Hospitalized with confusion and severe diarrhea
18 Restarted daily TPN due to weight loss of 10 lbs over 6 months

April 2011
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

May 2011
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

June 2011
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

July 2011
30-8/1 Hospitalized with confusion, infected knee

August 2011
Home all month but frequently confused; neuropsych testing performed

September 2011
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

October 2011
Mental status too fragile for Debbie to travel to Brazil as scheduled; did later travel 26-11/8

November 2011
8-26 Hospitalized with line infections, adrenal insufficiency, confusion

December 2011
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

January 2012
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

February 2012
Series of infections
27 First time standing up since sepsis 1/19

March 2012
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

April 2012
3-6 Readmitted with electrolyte imbalance and stressed kidneys
24-26 Readmitted with pneumonia

May 2012
Home all month!

June 2012
Home all month!
23 Prolia injection, followed by 7 W every day for blood tests and infusions

July 2012
2 Pneumonia, treated at home
11 TPN reduced from 16 to 12 hours/day

August 2012
Home all month!

September 2012
7-10 Hospitalized for line infection (after 19 weeks at home!)

October 2012

2-9 Hospitalized with dehydration and fluid in and around lungs

November 2012

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!

December 2012

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

January 2013

Other than one ER and frequent visits to 7W, home all month!

February 2013

Home all month!!

March 2013

11-18 Hospitalized with fever, dehydration, kidney issues

April 2013

6-May 5 Hospitalized with hematoma from a fall, and pneumonia.  Developed severe fluid overload and kidney failure.  Stopped TPN.

May 2013

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

June 2013

7W daily visits continue

13 Renal evaluation for kidney transplant–outcome: NO

24-25 ER/admission due to fall

Calcium beginning to stabilize

July 2013

Occasional days NOT having to go to 7W for calcium!

11-15 Elliott family reunion, Laurel Highlands

August 2013

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

September 2013

3-6 Hospitalized with high kidney numbers and other labs out of whack

9-20 Hospitalized again with unstable labs; cellulitis; restarted TPN

October 2013

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.

November 2013

12-21 Hospitalized with severe nausea, vomiting, diarrhea, and fever. Line infection and pneumonia.

December 2013

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)

January 2014

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

February 2014

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.

 

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