ID: 1 Child's Name: Bryan Child's Age: 11 Parent(s) Name(s): Shelly and Scott Type of Transplant: Kidney, living related (donor mom) Date of Transplant: June 17, 1997 Medical Center: Now seen at Children's Hospital, Seattle Washington; Transplant done at UCLA Medical Center, Los Angeles California; dialysis was monitored by Children's Hospital, Seattle, Washington; Born at University Hospital, Salt Lake City, Utah Diagnosis: Kidney failure, hydronephrosis, bilateral renal dysplagia, level 5 vesicoureteral reflux and hypertrophic bladder due to posterior urethral valves (obstructive uropathy), Autism Medications: Prograf 3mg 2x day, Rapamune 5mg 1x day, Prednisone 6mg 1x day, Ditropan 5mg 2x day, Fe-Tenic (iron) 150mg 2x day, Pepcid 20mg 1x day, Meletonin 5mg 1x day, children's vitamin with iron 1x day Other Information: Bryan spent 4 years on peritoneal dilaysis, 3 weeks on hemo-dialysis. He's had the following surgeries: Vesicostomy, Pyelostomy and Ureterostomy, Nephrectomy, valves ablated, ureter tapered and reimplanted x2, PD cath placed x3, Bilateral hydroceles repaired, g-tube placed, Quintin cath placed, Kidney transplant. He's also had many procedures such as VCUGs, urodynamics, kidney biopsy, etc. He's had one lengthy episode of rejection in 2002, but it has been treated. Residence: Billings, Montana, USA Child's Birthdate: April 11, 1992
ID: 2 Child's Name: Wooseok and Seunghyu Child's Age: 8 and 5 Parent(s) Name(s): Yewoon (mom) and Jaihyuk (dad) Type of Transplant: Kidney Date of Transplant: February 24, 2000; April 11, 2001 Medical Center: Yonsei Medical School, Severence Hospital Diagnosis: Unknown but recessive hereditary kidney diseases Medications: Wooseok: 75mg Neoral twice a day. 5mg alternative daily prednisone. Myranta. Seunghyun: 75mg Neoral twice a day. 5mg alternative daily prednisone. Mycostatin to prevent infection. Myranta. Other Information: Both children spent time on hemodialysis before transplant. Residence: Seoul, South Korea Child's Birthdate: January 29, 1995; August 22, 1998
ID: 3 Child's Name: Justine Child's Age: 14 Parent(s) Name(s): John and Loni Type of Transplant: Kidney, living donor Date of Transplant: June 23, 1999 Medical Center: Lucille Packard Children's Hospital at Stanford Diagnosis: Juvenile nephronopthisis dx May 1, 1999 Medications: Prograf, Prednisone, Calcium, Macrodantin Other Information: From California, younger brother - 11 with special learning needs, older sister - 17, neurotypical Residence: - Child's Birthdate: March 7, 1986
ID: 4 Child's Name: Jonathan Child's Age: 17 Parent(s) Name(s): Andy and Erin Type of Transplant: Kidney Date of Transplant: June 18, 1999 Medical Center: Children's Hospital in New Orleans Diagnosis: Bilateral renal dysplagia w/secondary bilateral reflux nephropathy Medications: Prograf, Prednisone, rapamune and procardia Other Information: - Residence: - Child's Birthdate: December 14, 1984
ID: 5 Child's Name: Jessica Child's Age: 19 months Parent(s) Name(s): Christy and Steven Type of Transplant: Liver Date of Transplant: January 19, 1999 Medical Center: - Diagnosis: Biliary Atresia Medications: Neoral, Prednisone, Batrim, PolyViSol Other Information: Older sister - 8 year old Rhonda Residence: - Child's Birthdate: February 27, 1998
ID: 6 Child's Name: Sanne Child's Age: 6 Parent(s) Name(s): Anette Type of Transplant: Heart Date of Transplant: February 4, 1998 Medical Center: - Diagnosis: Dilated Cardiomyopathy Medications: Imurel, Prograf, Prednisone Other Information: - Residence: - Child's Birthdate: June 6, 1994
ID: 7 Child's Name: Brandon Child's Age: 15 Parent(s) Name(s): Sharon and Calvin Type of Transplant: Kidney Date of Transplant: November 3, 1999 Medical Center: Indiana University Medical Center Diagnosis: Bilateral Renal Dysplasia Medications: Cellcept, Prograf, Prednisone, Septra, Aspirin, Adalat, Atenolol Other Information: - Residence: - Child's Birthdate: June 4, 1985
ID: 8 Child's Name: Alia Briean Child's Age: 9 Parent(s) Name(s): Mychelle, Stephen (divorced) Type of Transplant: Kidney Date of Transplant: October 20, 1998 Medical Center: Alberta Children's Hospital Diagnosis: Autosomal recessive polycystic kidney disease and hepatic fibrosis Medications: Cyclosporine, Azathioprine, Prednisone Other Information: Prior to TX, Alia had portal caval shunt placed in as well as two central venous catheters (broviac). Last one removed Jan 5, 2000. Current issues include hyperlipidemia, brittle bones, and warts. Residence: Calgary, Alberta Child's Birthdate: July 3, 1991
ID: 10 Child's Name: Brian Child's Age: 6 Parent(s) Name(s): Steve and Kay Type of Transplant: Living related kidney (from dad) Date of Transplant: May 23, 1997 Medical Center: Children's Hospital of Seattle Washington Diagnosis: Renal Failure due to Posterior Urethral Valves Medications: Cyclosporine, Prednisilone, Sirolimus, multi-vitamin Other Information: Customized homeschool education. Has two older sisters. No rejection episodes. Creatnine creeping (.8-1.1) as of summer 2000 for no apparent reason. Residence: Marysville, WA, USA Child's Birthdate: August 8, 1994
ID: 11 Child's Name: Kevin Child's Age: 3 Parent(s) Name(s): Lea and Brian Type of Transplant: Living related kidney (dad) Date of Transplant: August 28, 1998 Medical Center: Boston Children's Hospital Diagnosis: Renal failure due to posterior urethral valves at birth Medications: Cyclosporine, Prednisone, Mycophenalate, Multi-vitamin Other Information: - Residence: - Child's Birthdate: May 7, 1997
ID: 12 Child's Name: Lisa Joy Child's Age: 11 Parent(s) Name(s): Wendy and Peter Type of Transplant: Kidney Date of Transplant: April 26, 1995 Medical Center: Royal Children's, Melbourne, Australia Diagnosis: born with one kidney at 10% function - no reason given Medications: Cyclosporin,Mycophenolate, amoxil (for UTI) Other Information: Lisa had ricketts until age 2 and "clicky hip which was fixed by "von rosen" body splint worn until 3months of age. She was transplanted at age 3 1/2 and so far only 2 rejection episodes. She loves to be active and has a twin sister, Sarah and a Puppy dog "patch". Residence: Devonport tasmania australia Child's Birthdate: october 9th, 1991
ID: 13 Child's Name: Emily Child's Age: 3 Parent(s) Name(s): Katie and Mario Type of Transplant: Waiting for kidney Date of Transplant: - Medical Center: Miami Childrens Hospital (tx will be at University of Miami/Jackson Memorial Hospital) Diagnosis: Congenital Nephrotic Syndrome, specifically diffused Mensangial Sclerosis Medications: Calcium carbonate, Bactrim, Nystatin, Bibitra, Iron, Synthroid, Rocaltrol, Aspirin, Epogen, Growth Hormone, Polyvisol Other Information: twin brother, not affected Residence: Miami, Florida, USA Child's Birthdate: November 7, 1996
ID: 14 Child's Name: Kendra Lynne Child's Age: 8 Parent(s) Name(s): Darren and Kay Type of Transplant: Heart Date of Transplant: March 30, 1992 Medical Center: TCH The Children's Hospital of Denver Diagnosis: HLHS (Hypoplastic Left Heart Syndrome) Medications: Neoral (also takes a number of nutritional suppliments) Other Information: Kendra waited for two months from birth for her transplant. Spent another 8 months at TCH (The Children's Hospital in Denver, Colorado) due to serious respiratory complications - pleural effusions - several more surgeries, biopsies, chest tubes, ventilator most of the time, g-tube (for two years). Because of high doses of diuretics she has some slight hearing problems - mostly sensitivity to certain tones and loud noise. She is in special education at school with some developmental delays. We also do some alternative medicine in addition to her allopathic cardiac protocol. Residence: Colorado Springs, Colorado Child's Birthdate: February 1, 1992
ID: 15 Child's Name: Quantell Child's Age: 10 Parent(s) Name(s): Pam Type of Transplant: Waiting for liver Date of Transplant: - Medical Center: - Diagnosis: Primary sclerosing cholangitis (the disease Walter Payton had) Medications: Prednisone, Imuran, Actigall, methadone, noritryptyline, rotating antibiotics, four vitamin supplements Other Information: Quantell has multiple preexisting conginitive and physical disabilities (FAS, BPD, reactive airway, attachment disorder, PDD with retardation, g-tube, AFOs, short-gut, etc.) He was dx with PSC in 1996 after being really sick for the preceeding two years (it's a rare disease so chasing the diagnosis took lost of time and lost of wrong turns) Residence: - Child's Birthdate: April 29, 1990
ID: 16 Child's Name: Jon David Child's Age: 5 Parent(s) Name(s): David and Barbara Type of Transplant: Heart Date of Transplant: February 11, 1999 Medical Center: Tx at Primary Children's Hospital in Salt Lake City, Utah. Now at Children's National Hospital in DC Diagnosis: Dialated Cardiomyopathy Medications: Neoral, Imuran, Diltiazem, Magnesium (also takes CoQ10, a nutritional supplement) Other Information: Jon was born with no known heart condition. When he was 3 3/4 years old, he became very ill. The Doctors thought it was just a virus until they did a chest xray and discovered an enlarged heart. We then went to the Children's hospital for an echocardiogram and discovered that Jon's heart was functioning at about 6%. For two months the Doctors tried to improve his condition with medications. On January 21, 1999 he was listed for a heart transplant. He was doing well considering how sick his heart was until February 6 when he was rushed down to ICU because they could not find a pulse. They were able to stablize him with medications and in the morning of February 10 he was actually sitting up and eating a popscicle. Later that day he crashed when they sedated him to replace his bad arterial line. He then was put on a ventilator and a balloon pump. All his organs were beginining to shut down. At 11:00 pm they told us they had a heart. The heart was large for Jon and the function was not very good, they thought it was because the donor's body was shutting down but they could not be sure that was the reason. Then they said they did not expect Jon to live through the night. Jon is doing great now. His last heart catherization showed no rejection. Residence: - Child's Birthdate: February 2, 1995
ID: 17 Child's Name: Jack Child's Age: 7 Parent(s) Name(s): Jill and Rich Type of Transplant: Liver Date of Transplant: April 29, 1994; April 17, 1995; July 5, 1995 Medical Center: University of Chicago Diagnosis: Biliary Atresia Medications: Prograf Other Information: Other dx inclued asthma, avascular necrosis (hip), severe hearing loss (requires hearing aids), migraines, multiple allergies to meds and blood, lactose intolerant, short stature Residence: - Child's Birthdate: July 9, 1993
ID: 19 Child's Name: Nicholas Child's Age: 7 Parent(s) Name(s): Tony and Margaret Type of Transplant: Kidney (from dad) Date of Transplant: June 18, 2001 Medical Center: Childrens Memorial Hospital in Chicago Diagnosis: Juvenile Nephronophthisis Medications: rapamune, prograf, prednisone, cozar, norvasc,zantac, and singulair Other Information: He was diagnosed in May of 1999 and his creatinine jumped significantly from April until August. His brother and sister are negitive for the disease. Residence: - Child's Birthdate: June 21, 1993
ID: 20 Child's Name: Cami Child's Age: 20 Parent(s) Name(s): Toni Type of Transplant: Liver Date of Transplant: 1995 Medical Center: - Diagnosis: biliary atresia Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 21 Child's Name: Katelyn Rose Child's Age: 7 Parent(s) Name(s): Mary and David Type of Transplant: Matched Unrelated Bone Marrow Transplant Date of Transplant: May 7, 1999 Medical Center: - Diagnosis: Aplastic Anemia and Secondary EBV Lymphoma Medications: Folic Acid, Epogen and Procardia Other Information: Katy was diagnosed with Severe Aplastic Anemia at age 4. SAA is an autoimmune bone marrow failure syndrome. She was kept alive with over 100 transfusions of packed red blood cells and platelets until her BMT in May 1999. Her new marrow came from a donor on the National Marrow Donor Program's registry. We have recently been allowed to contact him, and he is a wonderful and caring 40 year old man from Virginia. Katy has some remaining health issues, including post-transplant nephritis caused by radiation and high serum ferritin (iron stores) that are caused by the multiple transfusions. She also has a secondary autoimmune disorder called Evan's Syndrome, which causes her to make antibodies against her platelets and red cells at times. She has had one occurrence, and the disease was put in to remission with high dose prednisone. We are working to resolve these issues, and Katy appears to be doing well! Residence: - Child's Birthdate: June 26, 1993
ID: 22 Child's Name: Jenna Lynne Child's Age: 14 Parent(s) Name(s): Lynne and Richard Type of Transplant: Kidney Date of Transplant: June 28, 2000 Medical Center: University of Wisconsin, Madison Diagnosis: MPGN (membranoproliferative glomerulonephritis) type II Medications: - Other Information: Diagnosed January 1992, renal failure June 1993, On peritoneal dialysis until transplant. Siblings: Rion - 16, Jessica (identical twin), Luke - 11 Residence: Iowa City, Iowa, USA Child's Birthdate: December 20, 1985
ID: 23 Child's Name: Joey Child's Age: 5 Parent(s) Name(s): Kelli Type of Transplant: Living related kidney (from mom) Date of Transplant: February 21, 1997 Medical Center: Children's Seattle, Washington Diagnosis: Congenital Nephrotic Syndrome; Post Transplant Lymphoproliferative Disease; brain damage and ADHD due to seizures; cortical vision impairment; cognitive impairment; adhd; grade 4 reflux of kidney Medications: Prednisone, Acyclovir, Bactrim, Rocaltrol, Zyrtec. and Children's Vitamin with iron Other Information: Joen has been on peritoneal dialysis and hemodialysis. He has had more surgery than I could imagine a child having (over 40). He has the most wonderful attitude and spirit! Residence: - Child's Birthdate: November 19, 1994
ID: 25 Child's Name: Katie Child's Age: 2 Parent(s) Name(s): Dani and Jim Type of Transplant: Kidney Date of Transplant: July 20, 2000 Medical Center: Presyterian/St. Luke's Medical Center Diagnosis: Bilateral polycystic renal dysplasia (congenital), hypothyroidism, pulmonary hypoplasia, failure to grow secondary to renal failure, hypertension, non-specific GI problems probably related to renal failure Medications: prednisone(30 mg/day), cyclosporine(60 mg three times/day), nystatin (3 cc 4 times/day), acyclovir (140 mg three times/day), lactobacillus (1 capsule three times/day), septra (5 cc/day), norvasc (1.25 mg twice/day), folic acid (200 mcg/day), multivits with iron (1 cc/day), aspirin (81 mg/day), sodium bicarbonate (10 meq/day), magnesium sulfate (100 mg/day), zantac (30 mg twice/day), calcium carbonate (2cc/day), synthroid (37.5 mcg/day), tylenol (240 mg q 4-6 hours prn) **whew** Other Information: peritoneal dialysis April 22, 1998 until July 19, 2000 Siblings: Linda, 15; Jessica, 12; David, 10 Residence: Denver Colorado, USA Child's Birthdate: April 14, 1998
ID: 26 Child's Name: Benjamin Child's Age: 11 Parent(s) Name(s): Thomas and Lisa Type of Transplant: living related kidney (mom) Date of Transplant: July 6, 1992 Medical Center: UNMC currently under NHS, Omaha Nebraska Diagnosis: Hydronephrosis, thick walled bladder, posturetheralvalves, bilateral urterosomy. Put intake in (91) Medications: Neoral, 100mg twice and day, 2mg predinose every other day, 650mg ferrous sulfate twice a day, docusate sodium ( stool softener), immurane 50mg at night, muli-vitamin, growth hormone, aspirin Other Information: Ben is very heathly, small in stature, has 3 other sisters and most of all he is a little boy Residence: - Child's Birthdate: -
ID: 30 Child's Name: Gavyn Child's Age: 2 Parent(s) Name(s): Jerry and Giselle Type of Transplant: Kidney Date of Transplant: April 15, 2001 Medical Center: UCLA, Los Angeles, California also is seen at Childrens Orange County Diagnosis: Posterior Urethal Valves resulting in End Stage Renal Failure Medications: Neoral cellcept pepcid norvasc prednisone iron Other Information: We found out about Gavyns illness the day before he was born. He was delivered the following day after no amniotic fluid was found. I had an Emergency C-Section, when he was born he did well, even stayed with me for 24 hours then the roller coaster began. He was diagnosed with Kidney Failure and the Doctors were not very promising with his outcome. He had a Vesicostomy at 2 days old to help his Kidneys kick in, they finally did once his Creatnine jumped to 5.0. Slowly it came down over the first year and he did great. It has since been climbing again and we are now getting very close to a Kidney Transplant and praying for a good donor match. Gavyn is a special little miracle as all the kids are on this site! Residence: Laguna Niguel, California, USA Child's Birthdate: 5-29-98
ID: 31 Child's Name: Brandon Child's Age: 8 Parent(s) Name(s): Chris and Brande Type of Transplant: small bowel and bone marrow Date of Transplant: June 23, 1996 Medical Center: Childrens Hospital of Pittsburgh Diagnosis: Total Colonic Aganglionosis (Short bowel syndrome due to Hirschsprung's Disease) Medications: Prograf,Predisone,Rapamune,Mag OX,Sodium Bicarb,Lopermide, Bactrim,Vitiams, Pepcid, Lactobacillus ,(Prn meds Immitrex Shots,Motrin) Other Information: Shortly after I was born, I became very sick and was placed in the Neonatal ICU. I had my first operation when I was 24 hours old. After spending two months in the Neonatal ICU, I was finally diagnosed with Total Colonic Aganglionosis (Short Bowel Syndrome due to Hirschsprung's Disease). This means that I am missing cells in my intestine and cannot absorb my food properly. I had to be fed intravenously and by a tube through my stomach. These intravenous feeds contains medicines that can damage your liver. I have a younger brother, Jonathan - 7. Residence: Lavergne TN Child's Birthdate: January 9, 1992
ID: 32 Child's Name: Spencer Child's Age: 6 months Parent(s) Name(s): Ellen & Chris Type of Transplant: Heart Date of Transplant: August 30, 2000 Medical Center: All Children's Hospital, St. Petersburg, Florida Diagnosis: hypoplastic left heart s/p Norwood Stage1 Medications: - Other Information: - Residence: - Child's Birthdate: June 3, 2000
ID: 33 Child's Name: Damien Child's Age: 6 Parent(s) Name(s): Paige and Jason Type of Transplant: Kidney Date of Transplant: 1/5/95 Medical Center: University of Minnesota Diagnosis: Bi lateral Displasic Kidneys, Microcephally Medications: Neoral 50mg tid, Azathioprine 50mg at night, Prednisone 4 mg daily, Bactrim 2.5 cc daily, Concerta 36 mg daily (ADHD) Other Information: Damien was written off at birth by doctors. Creatine was 7.8 when I took him home. They told the hospice nurse it would be a couple of days. Three weeks later I brought him back and asked what to do next. Damien had a transplant 7 months later from his grandmother. All the other health problems they diagnosised at birth seem to have disappeared. Damien off course has some growth problems and some learning delays due to microcephally but in all other aspects is a normal little boy. Residence: Clearwater, MN Child's Birthdate: 5/13/94
ID: 34 Child's Name: Lindsay Child's Age: 11 Parent(s) Name(s): Lauren & Lanny Type of Transplant: 2 Heart transplants Date of Transplant: 1992 and 2002 Medical Center: Texas Childrens in Houston,Texas Diagnosis: Her primary diagnosis was asd,vsd,pulmonary and mitral atresia,hypoplasitc left ventrical ,transposistion of the great vessels the second transplant was due to coronary artery disease Medications: Neoral,cellcept,zinc,nifedipine,coreg,magnesium,prednisone, folic acid,prilosec,prevacol,carafate,spironolactone,zofran,potassium,valgancyclovyr,multi vitamin,lasix,zaroxolyn Other Information: Lindsay waited for a year before she got her second transplant we were in the hospital for 5 months during this time.She developed MANY complications(DIC,pancreatitis,blood clots, total kidney failure requiring 24hr continuous CVVHD dialysis and many more). We were told on several occasions they didnt know if she would make it.However she is doing much better and we look forward to each day. She is obsessed with dogs.Loves Sailor Moon and Power Puff Girls. Residence: Houston,Texas USA Child's Birthdate: 10/2/90
ID: 35 Child's Name: Marc Child's Age: 12 Parent(s) Name(s): Aaron&Rebecca Type of Transplant: Kidney Date of Transplant: 12/12/00 Medical Center: Kosair Children's Hospital Lousville KY Diagnosis: ESRD do to Puv's Medications: Predisone,cellcept,cyclosporine,cytovene,myslex,norvasc, labetalol,bactrim,iron,zantac&multi-vitamin Other Information: Marc was born with Puv's they where not found till he was almost 7 years old I don,t think they would have found them at that time but he had been playing football with his uncle Mark and he got knocked down and when he hit the ground it coused the Puv's to rip and so he was bleeding when he would pee. They tolled us had this not have happend he might have died befor they ever found out. He has done real well though all this and only had to be on dialysis for 4 mounths before he got his tx. Residence: Jeffersonville Indiana USA Child's Birthdate: 12/14/88
ID: 36 Child's Name: Matthew Child's Age: 3 Parent(s) Name(s): Darla & Mike Type of Transplant: Kidney (living donor dad) Date of Transplant: July 31, 2001 Medical Center: Rainbows Babies & Children Diagnosis: Kidney Failure Medications: neoral, cellcept, prednisolone, vasotec, lasix, metolazone, bactrim, zantac, epogen & iron Other Information: Matthew was diagnosed with nephrotic syndrome at 15 months old and it progressed to focal segmental glomerulosclerosis in less than 7 months and then into end stage renal disease which he has been on dialysis since January of 2000. Residence: Ohio Child's Birthdate: 10-31-97
ID: 37 Child's Name: Seth Child's Age: 8 Parent(s) Name(s): Richard & Karen Type of Transplant: Heart Date of Transplant: July 10, 1998 Medical Center: Mott Children's Hospital, University of Michigan Medical Center, Ann Arbor, Michigan Diagnosis: Dilated Cardiomyopathy r/t myocarditis Medications: Cyclosporine,prednisone,imuran,pravachol Other Information: Seth was so very ill prior to his transplant, ECMO dependent with very little cardiac function left. He has done SO well since being transplanted, no rejection whatsoever. He is our bundle of energy; the happiest little boy we know! Thank heaven for organ donors!!! Residence: Michigan Child's Birthdate: April 14, 1992
ID: 38 Child's Name: Kelsey Child's Age: 7 1/2 Parent(s) Name(s): Stephen & Brenda Type of Transplant: Heart Date of Transplant: September 1993 Medical Center: Children's National Medical Center in Washington, DC Diagnosis: Congential Heart Disease Medications: Neoral capsules, (3) @ 25 mg each. twice a day. Temporarily, is on Norvasc (high blood pressure) 1 a day. Other Information: Kelsey was diagnosed with Congential heart disease, when I (Brenda) was 25 weeks pregnant. She went on the ht tx list the day she was born. She received her new heart at 6 weeks old. From a beautiful baby named Megan. Megan passed from a terrible childhood disease called SIDS (Sudden Infant Death Syndrome)at only 9 weeks old. Kelsey met her donor family when she was 4 years old. Kelsey has participated in many kinds of transplant awareness functions. She represented the state of WV for the First FAmily Pledge. And participated in the US tx olympics, held in 2000 in Disney. We had Kelsey and Megans picture done, and if you would like to see it, please go to the website http://www.portraitladies.com and click on Megan/Kelsey. She recently experienced a terrible side effect from her Prograf, which was causing her to have Short Term memory loss. Kelsey is currently preparing for her First Communion, and very excited for it. If anyone would love to email us, please do...Also, we have AOL instant messenger chat, and our buddy name is bmatsinwv, feel free to add us to your list, we would love to chat with other families with transplants. Or if there is anyone that would like any experiences that we had to go through to prepare and during her tx, we are there for support for that too. Please don't hesitate...:) We're looking foward to getting to know everyone on this new terrific website!!!! Residence: Inwood, WV USA Child's Birthdate: July 26, 1993
ID: 39 Child's Name: Amy Child's Age: 16 Parent(s) Name(s): Sue Davis & Doug Davis Type of Transplant: Liver Date of Transplant: 4/25/97 10/24/97 Medical Center: University of Michigans Mott Childrens Hospital Diagnosis: will need a 3rd TX in time Medications: Soudium Bi carb , Cyclo , Bactrim, asprin , actigall , One@ day Other Information: she got LPD in her first liver now 2nd liver the bile ducts went closed never reoped so she has 2 PTC drain tubes that help this liver to work till she gets sick enough to be listed for a 3rd liver Tx With the tubes in place she has to have them changed every month in 4 years she has been thru 109 surgerys / tube change / surgical procesures She is so brave and deals with it very well She has made honor roll in High School . She inspires everyone she touches . She is my hero ! Residence: Ypsilanti, Michigan USA Child's Birthdate: 7/11/84
ID: 40 Child's Name: Tasha Child's Age: 9 Parent(s) Name(s): Sean and Tammy Sollars Type of Transplant: Heart Date of Transplant: March 21,2001 Medical Center: North Carolina Baptist Medical Center Diagnosis: Dialated Cardiomyopathy, Heart Failure Medications: Neoral, Immuran, Prednisone, Gancyclovir, Cardizem, Vasotec, Bactrim, Nystatin Other Information: Tasha was the healthiest of my five children.She never had to go to the doctor for anything except once for seasonal allergies. She had complained of abdominal tenderness and had gotten sick at a sleep over. I took her to the local hospital thinking maybe it was appendicitis at the worst. The surgeon wanted a chest x-ray and found that she had a huge heart and was in heart failure. That was July 22, 2000. In less than one year her condition deteriorated and she was listed March 16,2000 after multiple hospitalizations and insertion of a Broviak catheter and receiving continous Milrinone IV therapy at home.She was blessed with receiving her new heart without a blood transfusion and has been doing wonderful.She has had two heart catheterizations and no sign of rejection. She is now running and playing and riding her bike. She is really looking forward to going to school since she has been out since December. Thank God for the talented people to helped save my daughters life and the unselfish generosity of the parents of the donor child. Residence: Elkin, Surry County , North Carolina Child's Birthdate: July 21, 1991
ID: 41 Child's Name: Adelle Child's Age: 16 Parent(s) Name(s): Delwyn & Bryce Type of Transplant: Kidney Date of Transplant: 28 June 2000 Medical Center: Starship Childrens Hospital, Auckland Diagnosis: FSGS Medications: Prednisone Micophenylate Cyclosporin Other Information: Immediate recurrence of FSGS in transplant. Proteinuria presently kept under control by weekly plasma-pheresis. Residence: New Zealand Child's Birthdate: 3 June 1985
ID: 42 Child's Name: Lindsey Child's Age: 2 Parent(s) Name(s): Grandmother-Kim Collins Type of Transplant: Kidney Date of Transplant: ? Medical Center: UK Medical Center-Lexington KY Diagnosis: multicystic kidney Medications: growth hormone,blood pressure, calcium, zantac, others Other Information: Lindsey is very small, she has only grown 11 inches since birth. She will have a transplant sometime this summer. Residence: Berea, KY Child's Birthdate: 6/22/99
ID: 43 Child's Name: Abby Child's Age: 5 Parent(s) Name(s): Julie and David Type of Transplant: Kidney (living related -mom) Date of Transplant: September 30, 1997 Medical Center: UCLA Diagnosis: bilateral multicystic dysplasia Medications: neoral(40mg TID), cellcept/MMF(100mg BID), prednisone (1.5mg alterante days);pepsid (10mg BID); niferex/iron (150mg daily); zyrtec (2.5mg daily), multivitamin with fluoride. Other Information: Born at 35 week gestation and immediately transported to UCLA. Original diagnosis ARPKD changed after cystic kidneys were removed and examined by many pathologists. Now has a 17-month-old brother, Adam, who is healthy. She is incredibly bright and funny! Definitely hates labs! Residence: Fresno, CA USA Child's Birthdate: 02-21-96
ID: 44 Child's Name: Sean Child's Age: 2 Parent(s) Name(s): Mark and Laurie Type of Transplant: kidney, living related (dad) Date of Transplant: soon Medical Center: University of Iowa OR Fairfield University of Minnesota Diagnosis: Multicystic kidneys and blocked ureters since birth, born with no amniotic fluid. Also has some failure-to-thrive and growth issues. Medications: Only four!! Epogen and Nutropin (growth hormone) injections and Feostat (an iron supplement) and Poly-Vi-Sol. Other Information: An older brother, Jacob, 4 1/2 Sean started PD at 10 days old, stopped at five months old, his ureter was fixed on the left left (gave up on the right side) at 7 months old (just had a hole in his back until then), now his creatinine is stable around 2.3. He had stomach reflux for 18 months, NG tube for first 12 months, now has a g-tube. He still doesn't eat any solids; he likes to spit them out. We had to wait until he was 10 kilos, and now we're looking forward to transplanting! Residence: Cedar Rapids, IA, USA Child's Birthdate: May 21, 1999
ID: 45 Child's Name: Dalton Child's Age: 10 Parent(s) Name(s): Shannon Type of Transplant: Kidney Date of Transplant: April 9,1996 Medical Center: Florida Hospital Diagnosis: blockage between kidneys and bladder Medications: Prograf 2mg. twice a day Prednisone 5mg. every other day Azathriopine once a day Sodium BiCarbonate twice a day Sulfatrim once a day Other Information: Dalton was diagnosed while I was pregnant. There was no amniotic fluid. No wonder it hurt so bad when he would move.They gave me a c-section at 31 weeks of pregnancy. He was 3lbs. and 15 inches long. He was beautiful. His first surgery was to bring the bladder to the surface so he could urinate. He came home from the hospital 2 and a half months later but had to be put back in a month later. This time he was their for 3 months and they finally put him on dialysis. He came home on peritonal dialysis. It was not an easy road. I can't count how many surgeries and hospital stays we had but he was a strong little boy. He was fortunate and was only on the transplant list 19 days. I wasn't unable to give him a kidney. Now he has been doing fine. He is in the 4th grade and gets into trouble like all little boys. Residence: ST.Cloud, FL. Child's Birthdate: April 11,1991
ID: 46 Child's Name: Isaiah Child's Age: 14 Parent(s) Name(s): Yolanda Wicks Type of Transplant: Kidney Date of Transplant: unknown Medical Center: Rainbow's Babies and Childrens of Cleveland Diagnosis: End Stage Renal Disease Medications: Bicitra, Fer-in-sol, Calcium Carbonate, Rocaltrol, Ditropan, Miralax, Trazodone, Procrit Injections, Humatrope Injections, Nephrocaps Other Information: My son will be having a transplant in the near future. For the moment, I have decided to wait on the actual operation because I feel my son is not pshychologically, emotionally or mentally ready for the responsibility that he would have to take on. At the present time, he is doing quite well. He just put on four pounds in one month and grew a few centimeters. The growth hormone is really helping him in every aspect. He also has urine/bowel incontinence which can be trying at times. I also have a 22 month old son and am a single parent. Let's just say, it can get overwhelming at times. I have a nurse who stays with us during the week at night to monitor the Home Choice Dialysis machine. Unfortunately, I do not have anyone helping with much of anything. I do everything on my own and it gets frustrating. I really don't have anyone to talk to. People seem to shy away from all the "baggage" I carry. Residence: Lorain, Ohio USA Child's Birthdate: July 31, 1987
ID: 49 Child's Name: Anthony "Munchie" Child's Age: 6mo Parent(s) Name(s): Katie and Gabe Type of Transplant: Liver Transplant Date of Transplant: Listed 10/9/01, Status 2B (still waiting as of 11/19/01) Medical Center: Shands Childrens Hospital, Gainesville, FL Diagnosis: Biliary Atresia Medications: Actigall, Aldactone, Bactrim, ADEK, Vitamin K, and Lasix Other Information: Munchie was diagnosed with Biliary Atresia at 4 wks old. They had done many tests but could not come up with a reason for his high bilirubin levels. He was not presenting with the classic signs of BA. They eventually did a HIDA Scan and Liver Biopsy which were both inconclusive so that left exploratory surgery. The surgeon found that he had no biliary system in his liver and that cirrhosis had already started to set in. They did the kasai right then and there, and that was on 6/21/01. Unfortunately the kasai failed and he slowly started developing many of the classic symptoms. We went to Shands in Gainesville for his Tx evaluation and we were officially listed status 2B on 10/9/01; His tummy is now very large, they have not tapped him yet, however I see it coming as the lasix and aldactone just aren't keeping the fluids down and he is starting to have a hard time breathing. Since his tummy is so big he doesnt eat as much so they put an NG tube in. It goes up his nose and to his stomach. We pump in about 1oz of formula an hour overnight so that he eats as much as possible. They want him to try to gain more weight before the surgery if possible. We are now just waiting for our gift of life!! We hope it comes soon while our little Munchie is still relatively healthy and strong. Residence: Clearwater, FL Child's Birthdate: 5/22/2001
ID: 50 Child's Name: Travis Child's Age: 15 Parent(s) Name(s): J.J.& Vallarie Type of Transplant: Liver Date of Transplant: 9/11/01 Medical Center: MUSC Diagnosis: BA Medications: Prograf,Magace,Clonidine(BP),Protonix(reflux) Other Information: - Residence: South Carolina Child's Birthdate: 4/11/1986
ID: 51 Child's Name: Bry-anna Child's Age: 9 Parent(s) Name(s): David and Diane Brice Type of Transplant: kidney Date of Transplant: n/a Medical Center: Boston Childrens Diagnosis: end stage reneal disease Medications: Labetalol, dht, minoxadil, nephedipine, epo, sodium bicar, multi vit., renal gel, iron, Other Information: very hypertensive, ill alot, frequent fluid gain, in need, has been on peri. dialysis for almost 2 years now. Residence: Limington, Maine, United States Child's Birthdate: 3/5/1992
ID: 52 Child's Name: Jalon Child's Age: 1 Parent(s) Name(s): James & Kori Type of Transplant: none yet Date of Transplant: - Medical Center: Childrens Hospital Diagnosis: Prune Belly Syndrome Medications: Bicitra,Procit,Amoxicillan, Katexolate, Iron, Peri-Colace Other Information: Jalon was dignosed when I was three months pregnant, they instructed us the he wouldnt survive past 20 weeks and that we should terminate the pregnancy. Needless to say he made it here! He has the prune belly syndrome, with severe reflux, we are in the process of determining the type of surgery is needed. His creatine has been steady at 1.0-1.1, his BUN has been elevating, and is now at 62. No plans for a transplant. Residence: Bowie, MD Child's Birthdate: 1/30/01
ID: 53 Child's Name: Martin Child's Age: 16 months Parent(s) Name(s): Joni Type of Transplant: Kidney Date of Transplant: ASAP Medical Center: Doernbecher Children's Hospital in Portland, Oregon Diagnosis: PUV's Medications: Bicitra, Iberet, Fluoride, Ferinsol, Procrit Other Information: Martin was born with end-stage renal disease needing dialysis right from birth. He ended up getting peritonitis while in the hospital causing his catheter to have to come out. While his catheter was out his labs actually improved allowing him to go with any treatment until 9 months of age, when he needed a PD catheter placed again along with unblocking his valves, closing his vesicostimy, and bringing down one of his testicles. After that major surgery he ended up getting a hernia which caused another surgery and time where we couldn't use the catheter, causing that catheter to kind of dry up. So that catheter had to come out and have another one put in. We used that catheter successly until this past December when he got a horrible peritonitis one that was just an unfortunate thing, something that I couldn't have prevented. His peritonitis was labeled as pseudomonous. Again his catheter had to come out. And he has been off of dialysis ever since for almost two months. His labs have not been good but ok, so right now they are trying to rush the transplant workup so that he can just go to a transplant instead of having another catheter and chance getting another infection. Residence: Hillsboro, Oregon, United States Child's Birthdate: 9-25-2000
ID: 76 Child's Name: Felix Child's Age: 2 1/2 Parent(s) Name(s): Jan and KT Type of Transplant: kidney Date of Transplant: 08/31/01 Medical Center: UC Davis Med. Center, Sacramento, CA Diagnosis: PUV's, Bilateral Renal Dysplasia Medications: Prograf, Cellcept, Bactrim, Prednisone,Norvasc,Provochol Other Information: Felix was on Dialysis for about 8 months prior to transplant. He still has a vesicostomy and will need bladder surgery in a few more years. Since surgery he has started to eat well and is quickly catching up developmentally. He is not yet on the height/weight charts and he continues to have some developmental delays. He has mild cerebral palsy in addition to the kidney issues. Overall he is doing great and we are thrilled!! Residence: Grass Valley, CA USA Child's Birthdate: 01/08/2000
ID: 77 Child's Name: Kyle Child's Age: 3 Parent(s) Name(s): Shawn and Mike Type of Transplant: liver Date of Transplant: December 19, 2000 Medical Center: Children's Healthcare of Atlanta Diagnosis: Biliary Atresia Medications: Neoral and Norvasc Other Information: Kyle was born on September 13, 1999, and was diagnosed with biliary atresia at 8 weeks. He had the Kasai surgery on November 29, 1999. He had significant portal hypertension even before his Kasai surgery, which enlarged his spleen and caused internal bleeding. After the Kasai he had many complications, including pneumonia with a collapsed left lung. He was hospitalized for his first Thanksgiving, Christmas, and New Years. Although he stabilized and began to grow, the damage had been done and his liver disease progressed to cirrhosis. He was listed for transplant in January 2000 and we immediately started living donor testing. I was refused as a living donor even before he was officially listed. I have polycystic kidney disease and couldn't donate. One by one, other family members were also ruled out. We had a pager and waited for the call, but months went by with no call. In November 2000, Kyle's Aunt Lyn was tested to see if she would be a match. Lyn is my brother's wife and is not a blood relative, but when my brother was ruled out as a donor, she volunteered to be tested. She was a match and finally on December 19, 2000, Kyle got his new liver -- a gift of love from his aunt. During the 5 months before transplant, Kyle had almost constant infections and IV poles were a regular sight in our home. He had MANY antibiotics and other meds. He had internal bleeding for 9 months before transplant. Five days after transplant, Kyle was walking around the ICU with no IVs and no internal bleeding. Today, Kyle is 3 years old. He loves to play outside and ride in the car. He's very active and healthy. He likes anything with wheels and will play (and sing) for hours. He's already had 3 new stitches in his head for falling outside. He likes turning the lights on and off, and flushing things down the toilet. To newcomers he is a normal little boy who doesn't look like he's ever been sick. All his liver numbers are in the normal range. We felt very alone for much of the time that Kyle was sick as we didn't have a computer and we didn't know anyone else who had biliary atresia -- or any other liver disease. We now have a happy, healthy little boy and a tremendous network of new friends because of his illness. I am glad to have the chance to tell his story! Residence: Alabama Child's Birthdate: September 13, 1999
ID: 78 Child's Name: Marisa Child's Age: 25 Parent(s) Name(s): Myself Type of Transplant: LIVER Date of Transplant: 5/1/88 Medical Center: Fairview University Medical Center Diagnosis: Biliary Atresia Medications: Prograf, magnesium, bactrim, and penicillin Other Information: I was born with BA in 76 and had my kasai in early 77. It worked until I was 11. I had a splenectomy due to a very enlarged spleen a week later i wasin liver failure in the PICU. I was trasnferred from teh children's hospital to Fairview to be listed and wait for my new liver. I waited in the hospital and was kept alive by IV's. I couldn't eat or drink because of severe bleeding. After 3 months I got my new liver! Any questions feel free to email. I am very invovled in teh liver and transplant community.:) Residence: Minnesota Child's Birthdate: 12/21/76
ID: 79 Child's Name: Joseph Child's Age: 3 Parent(s) Name(s): Laura Guy Type of Transplant: kidney Date of Transplant: October 16,2001 Medical Center: Mott Childrens Hospital Diagnosis: End Stage Renal Disease Medications: Tacrolimus 0.5 mg /ml 2 x day Cellcept 200 mg /ml 2 x a day Isradipine 1 mg/ml 2 x day Propranolol 8 mg /ml 2 x day Zantac 15 mg/ml 2 x a day Sulfatrim 200-40-5 bedtime Niferex 100 mg/5ml 2 x a day Neocate plus 1 with addatives -soduim bicarb Prednisone 5 mg/ml 2 x a day Other Information: Diagnosis, e.s.r.d Bilateral inguinal hernias,Renal hypertension ,Gastroesophageal reflux,history of urinoma following transplant primary epstein-barr viral infection also C.M.V Bladder dysfunction with history of acute post renal failure Post Urethral Valves,Bilateral native nephrectomies with repair of kidney reflux,bladder augmentation,small pieace of small intestion used to make bladder bigger.also appendix attached to bladder,through belly button,called mitrofanoff,used to cath,joe joe does not urinate on his own.also has a history of pseudomonas, also a 6 french infuse a port,into left external jugular, Residence: Toledo ,Ohio Child's Birthdate: 12-25-1999
ID: 80 Child's Name: Alicia Child's Age: 10 Parent(s) Name(s): Patti & Jim Type of Transplant: Kidney Date of Transplant: 11/800 Medical Center: Children's Hopsital of Philadelphia Diagnosis: Crossed fused malrotated etopic kidneys Medications: Prednisone 9mg 4x weekly, Prograf 3.5mg Bid, Cellcept 250mg Bid,Zantac 75mg daily,Lipitor 10 mg daily,Zyretec 10 mg daily, Pulmicort 2 puff Bid, Albuterol 2 puff daily. Other Information: - Residence: Philadelphia, Pa USA Child's Birthdate: 10/18/92
ID: 81 Child's Name: Christina Child's Age: 9 Parent(s) Name(s): Lori McReynolds Type of Transplant: Lung Date of Transplant: 1/23/01 Medical Center: St Louis Childrens Hospital Diagnosis: pulmonary hypertension Medications: Cyclo, Imuran, Predisone, Prilosec, Zestril, Diamox (sp?), iron, calcium, mag ox, vit D, IVIG, and more Other Information: - Residence: Neosho, MO USA Child's Birthdate: 4/13/93
ID: 82 Child's Name: Joel Child's Age: 3 Parent(s) Name(s): Trent and Denise Type of Transplant: Kidney ( Living related donor) Date of Transplant: November 21, 2001 Medical Center: IWK Health Centre Halifax Nova Scotia Canada Diagnosis: Congenital Nephrotic Syndrome Medications: Neoral 75mg TID; Immuran 25mg OD; Prednisone 12.5mg Q 2nd day; Vitamin D .25mcg OD; Magnesium 35mg TID; Synthroid 25mcg OD ; Monopril 5 mg OD; Acyclovir 50 mg TID; Iron 30 mg BID; Joules Soln 10 mls BID Other Information: Joel was treated until the day of his transplant with Albumin infusions . He always had kidney function and never had to rely on Dialysis .His Dr treated him with Captoril and Indocid (the side effects of both of these is that they both lower your kidney function) so they used thiese to slow his kidneys down to where they still functioned but they were somewhat able to slow down the massive loss of protien . Up until transplant Joel also had an AT III deficency and therefore his blood clotted too quickly so he rec'd lovenox (heparin) injections twice a day and because of his low hemaglobin he rec'd EPO injections twice a week. Joel is doing incredibly well since his transplant he did have a mild rejection at 6 weeks post transplant but they were able to treat him with steroids and able to reverse the rejection. I have a son who will show you his "line" where his "new kidney" is and it isn't until then that ppl know he was at one time a very sick little boy . We hope his new kidney ( given to him by mom) will last a very long time but dad is a potetial donor as he matched as well . If anyone would like to chat I am very open and hey feel free to contact us trentanddenise@eastlink.ca I hope that all is well with everyone and their children Residence: Pictou, Nova Scotia Canada Child's Birthdate: September 14, 1999
ID: 83 Child's Name: Matthew Child's Age: 11 Parent(s) Name(s): Gary and Vonya Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: VATER Medications: Ditropan XL 10mg,Methanimine,Prevacid. Other Information: Matt was born with VATER's,a High Imperfrated anus so he has a colostomy, Micro Urethra so he has a vesicostomy in his belly button. He also has a mucas fistula. Matt has had around 30 surgeries. But at this point is surgery and UTI free for a little over 2 years..YAHOO Residence: Nebraska, USA Child's Birthdate: 08/17/1992
ID: 84 Child's Name: KJ Child's Age: 6 as of no Parent(s) Name(s): JS and Me Type of Transplant: Kidney transplant may required in the future Date of Transplant: - Medical Center: LIJ, and St.Charles Hospital ,NY Diagnosis: Bilateral hydronephrosis/hydroureter Medications: Ditropan XL 15 Mg, Vasotec(Enalapril 2,5 mg ) ,was on bicitra, epogen earlier on. Vitamin E 400 Units , Tums 550 Mg,iron Other Information: KJ was born in 1997 9lbs and 14 OZ. At age 5 was diagnozed with PUV after he had twice internal hematuria (blood and pain while urinating). Grade IV hydronephrosis on left kidney grade II/III on right side. Hydroureteres as well. Bladder wall is thick and diverticula on left side.Has developed hypertension as well. Had cystoscopy in 2002 and are following up with RUS and blood work. Residence: LI , NY Child's Birthdate: 1997,March
ID: 85 Child's Name: KJ Child's Age: 6 as 03 Parent(s) Name(s): JS and Me Type of Transplant: Kidney transplant may required in the future Date of Transplant: - Medical Center: LIJ, and St.Charles Hospital ,NY Diagnosis: Bilateral hydronephrosis/hydroureter Medications: Ditropan XL 15 Mg, Vasotec(Enalapril 2,5 mg ) ,was on bicitra, epogen earlier on. Vitamin E 400 Units , Tums 550 Mg,iron Other Information: KJ was born in 1997 9lbs and 14 OZ. At age 5 was diagnozed with PUV after he had twice internal hematuria (blood and pain while urinating). Grade IV hydronephrosis on left kidney grade II/III on right side. Hydroureteres as well. Bladder wall is thick and diverticula on left side.Has developed hypertension as well. Had cystoscopy in 2002 and are following up with RUS and blood work. Residence: LI , NY Child's Birthdate: 1997,March
ID: 86 Child's Name: Kaitlyn Child's Age: 10 1/2 mon Parent(s) Name(s): Kelly and Karl Type of Transplant: Kidney in near future Date of Transplant: possible Dec 2003 Medical Center: Stanford Diagnosis: bilateral dysplastic kidneys Medications: Sodium bicarbinate, iron, reglan, DHT Other Information: Dx at 2 1/2 weeks, peritoneal diaysis catheter put in at 7 months but as not had to use it yet, has central line and NG tube. Born 5 1/2 weeks early, but no other problems that we know of. Residence: Fair Oaks, CA, USA Child's Birthdate: October 1, 2002
ID: 87 Child's Name: Kaitelyn/ (Kaite) Child's Age: 9 Parent(s) Name(s): Bobby and Christa Type of Transplant: heart Date of Transplant: - Medical Center: Columbia/Presbytarian Babies Hospital NYC,NY Diagnosis: cardiomyopathy Medications: - Other Information: heart transplant at nine months of age Residence: Mattydale,NY Usa Child's Birthdate: 8/25/94
ID: 88 Child's Name: Daniel Child's Age: 12 Parent(s) Name(s): Margaret Type of Transplant: Kidney Date of Transplant: 10/31/2000 Medical Center: St Barnabus Diagnosis: reflux Medications: Prograf, Prednisone, Bactrim, Lobetatol, and Procardia Other Information: Living Donor transplant (Uncle). Side effect - High Blood Pressure Residence: East Orange, NJ,USA Child's Birthdate: 03/29/91
ID: 89 Child's Name: Bailey Child's Age: 4 Parent(s) Name(s): Mary Ann R. McCullough Type of Transplant: Heart Date of Transplant: 4/18/00 Medical Center: Denver Childrens Hospital Diagnosis: Hypo-Plastic Left Heart Syndrome Medications: currently: Neoral Other Information: Bailey is extremely outgoing and happy. Residence: Denver, Colorado Child's Birthdate: 1/24/00
ID: 90 Child's Name: Bryce Child's Age: 7 Parent(s) Name(s): Nic Bordelon Type of Transplant: Kidney Date of Transplant: August 18, 1998 Medical Center: Tulane Medical Center Diagnosis: Diffuse Misangel Sclerosis Medications: Neoral, Prelone, Immuran, Norvasc Other Information: We would love to hear from you! Residence: Greenwell Springs, LA Child's Birthdate: January 21. 1997
ID: 91 Child's Name: Johnathan Child's Age: 17mo. Parent(s) Name(s): Vern & Jennifer Type of Transplant: will need a heart Date of Transplant: not yet Medical Center: Childrens Hospital of Denver Diagnosis: Dilated Cardiomypathy Medications: Lasix(furosemide),Lanoxin (digoxin), Captopril, & Coenzyme Q Other Information: We find out about johnathan heart diease when johnathan was 5mo. he stayed in the hospital for about 1mo. Was given medications, and they did a cariac catheterization to see the pressure in his heart and it was at a 20%. Months later he was put on a study medication witch is a beta-blocker. he was doing really good for a couple of months. Now one year later, the doctors are going to do a nother catheterization. If johnathan heart pressure is at a 25% or 28% Johnathan will need a heart transplant. Residence: Westminster, CO. Child's Birthdate: August 20 2002
ID: 92 Child's Name: Erin Child's Age: 2 Parent(s) Name(s): Irene & Matt Type of Transplant: Liver Date of Transplant: 4/14/02 Medical Center: Children's Hospital of Philadelphia Diagnosis: Primary Hyperoxaluria Type 1 Medications: Prograf, Zantac, Norvasc, Labatelol Other Information: Erin was born in kidney failure. PH1 is a kidney disease but the liver is the culprit(missing an enzyme). It is also autosomal recessive, so I am lucky my older 2 don't have it. We were facing a kidney/liver transplant but through the grace of God her kidney function came back. One year after transplant Erin suffered nephrotoxicity from the prograf. Today her kidney function is almost normal but the kidneys are damaged. So we are praying that we can keep them in good shape to avoid a kidney transplant. Residence: Toms River, NJ Child's Birthdate: June 6, 2001
ID: 93 Child's Name: Alex Child's Age: 2 1/2 Parent(s) Name(s): Rhonda & Lars Type of Transplant: Kidney Date of Transplant: - Medical Center: Dorenbeckers Childrens Hospital Diagnosis: Bilateral Multicystic Dysplasyia Medications: Sodium Bicarb, Vitamin D Other Information: Alex had a ruff time when he was born, first at sacred heart hospital born at 34 weeks, stayed there for a week. Was clinical dead for 20 minutes when they brung him back, he had to much fluid in his lungs and it crushed his heart because he was layed on his side. After that he was sent to dorenbeckers hospital were he was diagnosed then the roller coaster has still been going on. He will have surgery on the March 1st for a g tube.Because he is to some to make it through the surgery. Residence: Junction City, Ore Child's Birthdate: 9-10-01
ID: 94 Child's Name: Amanda Child's Age: 9 years Parent(s) Name(s): Tracey Type of Transplant: Living Donor- Father Date of Transplant: 2-9-04 Medical Center: Lucile Packard Children's Hospital Diagnosis: FSGS Medications: Prograf, Cytoxin, Atenolol, Clonodine, Amlodipine, Slow-Fe, Neurontin, Nitrofurantoin, Pepcid, Asperin, Prednisone, Epogen, Other Information: Diagnosed @ 7yrs with Minimal Change Disease. 6 Months later had both kidneys removed (full blown FSGS.) Non-responsive to any medications or treatments. Hemo dialysis then peritoneal dialysis, then hemo again. Attempted Steroid-Free transplant, FSGS returned day after kidney transplant. Now treated with Plasma phresis 2x a week, Prosorba Column A 1x week, with three month course of Cytoxin. Protein Creatin Ratio high and inconsistent. Amanda wears a Hepa Filter mask due to the extreme immunosuppression. Will decrease frquency of Phresis when course of Cytoxin finished. Odds are high of losing the new kidney at that point. Residence: Carson City, NV USA Child's Birthdate: 8-9-94
ID: 95 Child's Name: Daniel Child's Age: 8 Parent(s) Name(s): Phil & Marieta Type of Transplant: Kidney (living non related donor step dad) Date of Transplant: 17/07/2001 Medical Center: Mater Childrens Hospital, Brisbane, Queensland, Australia Diagnosis: Congenital Nephrotic Syndrome Medications: Cyclosporin 1.1ml& 1.2ml, Cell Cept 250mg x2, Prednisone 5mg daily, Vitamin Other Information: If you would like to email me at marieta@sutty.id.au Feel free. I would love to hear from other people. Daniel is 3 yrs post kidney transplant. Too much information to type in this little box. Residence: Thornlands, Brisbane, Queensland, Australia Child's Birthdate: 18/10/1995
ID: 96 Child's Name: Matthew Child's Age: 3 1/2 at O Parent(s) Name(s): Jen Perkins and Mick Bell Type of Transplant: Kidney Date of Transplant: 20/8/03 Medical Center: Royal Children's Hospital, Melbourne Australia Diagnosis: bilateral dysplastic kidneys secondary to post urethral obstruction Medications: Cellcept, Tritace (Ramipril), Tacrolimus, Bactrim. Other Information: Matthew was born 8 weeks premature at Launceston General Hospital with 7% renal function. The urethral obstruction that was the cause of all this had partially cleared sometime between 16 and 20 weeks gestation, however the damage was already done. His ultrasounds always looked like one kidney had avoided any damage so we were hopeful of a happy ending. Matthew was fed by Nasal Gastric tube from birth until 5 months post transplant. Our only attempt to feed him normally resulted in a dramatic weight loss. His tenkoff catheter was put in at 5 months of age and due to a slight decrease in his creatinine levels we held off beginning dialysis until 5 months later. Matthew had a few hicups along the way, some were big and life threatening and scarier than the transplant. We constantly had problems with phosphates and potassium and Matthew had rickets and reflux and he had intolerance issues with his formula (Kindergen)but we made it and he is now happy, healthy and full of energy. Our job now is to try to kep him like that! Residence: Launceston, Tasmania, Australia Child's Birthdate: 30/03/01
ID: 97 Child's Name: Julie Child's Age: 9 months Parent(s) Name(s): Ali and Kristie Type of Transplant: Liver, stomach, small and large intestine, pancreas and sleen Date of Transplant: waiting Medical Center: University of Miami Diagnosis: Hirschsprung's Disease Medications: Procrit, Tpn (16 hours a day) Actigal Other Information: Julie was born with Hirshsprungs Disease and has had three major operations on her intestines. She is totally dependent of Tpn/Il for her nutrition. She was in the hospital for the first 6 months of her life. She has been at home for the past 3 months. We are waiting for her transplant in Florida. After transplant, when Julie is better, we will return to Tennessee. She is doing very good at home. She is very happy and smiling all the day..She has two brothers back in Tennessee waiting for her. Residence: Deerfield Beach, Florida(From Nashville, Tennessee, here in Florida until transplant) Child's Birthdate: 01/13/04
ID: 98 Child's Name: Courtney Child's Age: 12 Parent(s) Name(s): Marcia Scott Type of Transplant: kidney Date of Transplant: June 4 2002 Medical Center: Penn State Hershey Medical Center Diagnosis: FSGS Medications: currently--prednisone, bactrim, niferex-forte, multi-vitamin Other Information: Courtney was diagnosed at age 2 with nephrotic syndrome, could not be controlled, biopsy confirmed FSGS at age 4. Kidney failure at age 9. FSGS re-occurred in transplanted kidney but she had plasmaphresis and the the FSGS is in remission. She was on pograf but was stopped because she developed PTLD. Has been on prednisone only since January 2004. She is doing great. Residence: York, PA United States Child's Birthdate: November 1, 1991
ID: 99 Child's Name: Destiny Child's Age: 5 Parent(s) Name(s): Jody and Christy Goss Type of Transplant: Kidney Date of Transplant: 12-10-2004 Medical Center: UTMB Children's Hospital Galveston Texas Diagnosis: ESRD secondary to Chronic Interstitial Nephritis Medications: Prograf, Imuran, Zenopax, Valcyte, Prednisone, Nystitan, Magnesium Oxide, Norvasc, Pepcid, Bactrim Other Information: We found out that Destiny had kidney failure on July 14, 2004 because the doctors were doing blood work to see if she was dehydrated. She was asymptomatic physically and we are very thankful that she didn't have to go on dialysis. We don't know what caused the kidney failure or when it started. We know that within 5 months our healthy little 5 yr old went from being healthy to having a transplant. Her story is on www.DestinysHope.com Residence: Vidor, Texas, USA Child's Birthdate: 9-15-1999
ID: 100 Child's Name: Dominic Child's Age: 9 Parent(s) Name(s): Michael & Angel Type of Transplant: Kidney Date of Transplant: 2/12/2001 Medical Center: Cleveland Clinic Foundation Diagnosis: Staph Infection, PUV, ESRD Medications: Cellecept 1cc 2x/day, Prograf 10cc 2x/day, Bicetra 20cc 3x/day Other Information: Peritoneal Dialysis for 4 1/2 years, Hemodialysis for 6 mos. Residence: Akron, Ohio, U.S.A. Child's Birthdate: 12/17/95
ID: 101 Child's Name: Dilruba Child's Age: 8 Parent(s) Name(s): Faik - Zeynep Type of Transplant: Kidney Date of Transplant: 3/3/2004 Medical Center: University Hospital, Cleveland Diagnosis: Diffuse Mesangial sclerosis Medications: Cellcept, Zantac, Sodium Bicard, dapsone, Niferex, Prednisone, Prograf. Other Information: Dilruba was born with kidney failure due to a genetic mutation. She had peritoal dialysis, then she got candida infection and she was put on hemo. In march 2004 she had transplant from her mom. Since then everything looks fine. Residence: Cleveland, OH, USA Child's Birthdate: 2/27/1997
ID: 102 Child's Name: Raiden Child's Age: 4 1/2 Parent(s) Name(s): Paul and Andrea Type of Transplant: Heart Date of Transplant: 8/11/2000 Medical Center: U of Michigan-Mott's Women and Children's Hospital Diagnosis: HLHS Medications: Imuran and Sandimmune Cyclosporin Other Information: Raiden is now 4 1/2 years out from his transplant and has had 3 biopsies all came back a "0". One hospitalization for Rotovirus and one for a blood clot in his heart after his biopsy and had his tonsils out. Residence: Watertown, SD USA Child's Birthdate: 8/1/2000
ID: 103 Child's Name: Eryn Child's Age: 4 Parent(s) Name(s): Tara and Thomas Type of Transplant: Kidney Date of Transplant: not yet scheduled Medical Center: Arnold Palmer Hospital for Women and Children, Orlando, FL Diagnosis: ESRD, Focal Segmental Glomularsclerosis, Nephrotic Syndrome dx on 10/01 Medications: BiCitra, NuIron, Calcitrol, Renalgel, Dialyvite, Lipitor, Epogen Alfa, Tums 1000mg, Blood Pressure medication, other Other Information: Been on Peritoneal Dialysis since 6/2003. Went into congestive heart failure and respiratory failure on same date. Symptoms of Nephrotic Syndrome began 5 days after MMR vaccination at the age of 15 months. Looking for kidney donor, father has high blood pressure and mother not a match. Family members either not a match or not eligible due to health problems. Residence: Melbourne, FL, United States Child's Birthdate: 07/31/2000
ID: 104 Child's Name: zahira Child's Age: - Parent(s) Name(s): tammy and sean sollars Type of Transplant: heart Date of Transplant: 3/21/2000 Medical Center: baptist Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: 7/21/91
ID: 105 Child's Name: Justice Child's Age: 3.5 Parent(s) Name(s): Alex and Sheryl Type of Transplant: Living Donor Liver Date of Transplant: 6/3/02 Medical Center: Lucile Packard Children's Hospital at Stanford Diagnosis: Biliary Atresia Medications: NONE!!!! Other Information: After a late diagnosis of biliary atresia, Justice had his Kasai at 9.5 weeks which ultimately failed. He received his gift of life from my hero, my friend Charity on June 3rd, 2002. Just four short months later Justice battled PTLD and proved to be a miracle boy once again. He is now thriving, with his new liver, on NO IMMUNOSUPPRESION. Hooray. Residence: Beaverton ORE Child's Birthdate: 12/1/01
ID: 107 Child's Name: Julie Child's Age: 17 months Parent(s) Name(s): Kristie and Ali Type of Transplant: Liver, Small and Large bowel, Pancreas, and Sleen Date of Transplant: October 30, 2004 Medical Center: Jackson Medical Center, Miami. Florida Diagnosis: Hirschsprung Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 108 Child's Name: MISTY Child's Age: 10 Parent(s) Name(s): MARY G Type of Transplant: - Date of Transplant: - Medical Center: CHILDRENS HOSPITAL MILWAUKEE WIS Diagnosis: GRADE 3AN 4 Medications: N/A RIGHT NOW Other Information: MY CHILD HAS KIDNEY REFLUX IN BOTH AN BEEN TO CHILDRENS HOSPITAL OFF AN ON FOR 4YRS SHE IS 10 YRS OLD AN HAD SURGERY WHEN SHE WAS 9 YRS AN SHE HAS TO GO BACK TO CHILDENS HOSP. AGAIN CAUSE OF BLOOD IN URINE Residence: OSHKOSH WINABAGOO WIS Child's Birthdate: 9-21-93
ID: 109 Child's Name: Marshall Child's Age: 9 Parent(s) Name(s): Susan and Phil Type of Transplant: Kidney Date of Transplant: Unknown Medical Center: UNC-CH Diagnosis: ESRD Medications: Nutropin GH, Arasnep, Ferrous Sulfate, Calcitrol Other Information: We are looking for other families in the Raleigh area to get together with and share ideas, experiences, and concerns. Residence: Raleigh, NC, USA Child's Birthdate: 5/23/96
ID: 110 Child's Name: Jake Child's Age: 11 Parent(s) Name(s): Jeff and Jenny Type of Transplant: Kidney Date of Transplant: 7/1/05 Medical Center: Fairview University Medical Center - Minnesota Diagnosis: Juvenile Nephronothesis Medications: Neoral 175mg 2X/day, Cellcept 500mg 2X/day, Norvasc, Ferrous Sulfate, Bactrim, Epogen injections, (Neupogen injections at times) Other Information: I am very interested to hear from other parents in dealing with transplants and any post transplant issues. Our son has been in and out of the hospital with mystery fevers since transplant. We are very blessed to have such a wonderful medical facility so close to us. Residence: WI Child's Birthdate: 7/13/94
ID: 111 Child's Name: Sarah Child's Age: 3 Parent(s) Name(s): Marc & Kim DiCapua Type of Transplant: Kidney Date of Transplant: 10-7-2004 Medical Center: Cincinnati Children's Hospital Diagnosis: Diffuse Mesangial Sclerosis Medications: Prograf, Prednisone, Immuran Other Information: - Residence: Avon Lake, OH USA Child's Birthdate: 04/16/2003
ID: 112 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 113 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 114 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 115 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 116 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 117 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 118 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 119 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 120 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 121 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 122 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 123 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 124 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 125 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 126 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 127 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 128 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 129 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 130 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 131 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 132 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -
ID: 133 Child's Name: - Child's Age: - Parent(s) Name(s): - Type of Transplant: - Date of Transplant: - Medical Center: - Diagnosis: - Medications: - Other Information: - Residence: - Child's Birthdate: -