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Posted 10/30/2010 7:04 AM (GMT 0)
My mom was diagnosed with ESLD almost 3 months ago. She is 67 and will be 68 at the end of Nov. She was an alcoholic for years. The docs told me that she had cirrhosis of the liver years ago and that she needed to stop drinking...so she did... in March of 07.
Near the end of Aug. this year I took her to the hospital for continuous vomiting. They did a couple of CT scans, tried to do a colonoscopy (spelled it wrong) upper and lower GI's. When the doctor was done with the upper GI he told me that my mom has esaphageal and portal varices along with portal hypertension. Well I must have had a dumbfound look on my face because he asked me if I was scared by what he just told me. I asked him to explain the medical terms of what he said in English, and what was the cause? He looked at me and said she's in liver failure and we don't do transplants at this hospital. Over the past 2 months things have gotten worse. She can hardly walk even with her walker, she doesn't know when she's urinated(when she goes) and she isn't having many bowel movements. We keep a diaper on her at all times. She doesn't want to eat much and some days doesn't want to get out of bed and cries just from us trying to sit her up in bed. Last week she started jerking her feet, the hands are jerking so badly now that she has to be fed. Is it time for hospice?
She talks to her father and husband (both deceased) and believes a towel or napkin are a baby girl she talks to and carries with her. Sometimes she just mumbles and we can't make out what she's saying or wont talk at all. She's constantly twiddling her fingers. Hallucinations started daily about 2 weeks ago along with talking off the wall. She has started becoming angry for no reason. We asked for her ammonia level to be checked and 3 weeks ago it was 35 doc said it was good. The pain is getting worse, called the doctor on Thursday last week because she has been going down hill and getting worse by the day. We called him again Mon-Friday because he didn't return our call and his nurse informed my sister one week and a day later... that he no longer wants mom as his patient because we call too much and he has other patients he has to see. This is so hard. I wish there was some sort of time line to go by. My brother thinks this will be her last Christmas with us. I have always been positive about her health and faced her issues head on. This time is so different. I feel like I have lost my mom and best friend. I know this isn't how she wants to be. Thanks for listening...felt good to talk about it, maybe I will get some sleep tonight.
Posted 10/30/2010 12:13 PM (GMT 0)

 

Calendar Girl,

 

Welcome ot the forum.  I’m so sorry you’re having to deal with this.  I must say that I was dumbfounded reading your post.  Your Mother was diagnosed with cirrhosis in 2007 and ESLD in August of this year.  The GI doctor is telling you that the hospital she was at does not perform liver transplants.  Has she been referred to a hepatologist at a transplant center for evaluation in the last 3 years?   All of the symptoms you are describing about your Mother are manageable to a degree and she should be seeing a qualified hepatologist not a GI doctor.  Besides, it sounds like the GI doctor wants to wash his hands of her case.

 

This weblink will take you to OPTN (Organ Procurement Transplant Network) that provides a current list of hospital/centers that perform liver transplants.  Review the list and determine if there is one in your area.  If she’s not been evaluated and her doctor hasn’t referred her, I would load her into the car and rush her to one of these center’s emergency rooms. 

 

http://optn.transplant.hrsa.gov/members/directory.asp

 

Good luck and God bless.

 

Penny

Posted 10/30/2010 1:08 PM (GMT 0)
Welcome to the forum Calendar Girl. I just can't believe the attitude of the doctor. Why hasn't he referred your mother to someone that can help her? Especially since he does not want to. I have learned that alot of doctor's and even some hospitals are not experienced enough in the area of liver disease.

I agree with Penny. Hepatolgoist specialize in liver disease and would be better equipped to help your mother.

There are alot of people here that understand just what you are going through.

Thoughts and prayers are with you.
Posted 10/30/2010 5:57 PM (GMT 0)

Calendar Girl, welcome to the forum.  (BTW, you spelled colonoscopy correctly...we have a Medical Word list at the top of the page to help you out if you need it, too.)

Like the others, I am appalled at the lack of treatment she has received.  She should be on Lactulose, given her symptoms.  I am 100% with Penny--get her to a hospital where they do transplants.  Go to the ER, otherwise she might have a long wait for an appointment.  They will probably do a direct admit through the ER.

I can tell you that some doctors want nothing to do with liver patients whose disease is caused by alcoholism...never mind that she has been sober for 3 yrs.  Her GI doc sounds like one of those.

Has she been to AA at all or did she just stop drinking on her own?  The problem is that most (all?}transplant centers require documented evidence of AA meetings or alcohol counseling.  But even if they won't consider her for transplant, they should give her some good medical care...which everyone deserves, regardless of how they got sick.

Doctors are not Gods.  If you want to help your mom, or give her a chance to have a better end-of-life experience, you have to be very proactive.  She is not in a condition to do so herself.  When I learned I had liver cancer in '06, the hospital where I was being seen threw up their hands and said there was nothing they could do for me.  I was well enough to be my own advocate.  I was not going to accept that death sentence without a fight.  I contacted Mayo and they literally saved my life.  If I had not advocated for myself, I would not be here today.

Your mom's best chance is probably a liver transplant.  But even if she doesn't qualify, she needs to be seeing a hepatologist, not a GI doc.

Be sure to check out the Caregiver's thread on here, too.

Hugs,

Connie

P.S.  Penny, I couldn't find a list of hospitals at that site.


Posted 10/30/2010 6:58 PM (GMT 0)
Thanks for the heads-up Connie. I don't know why the link didn't work but here is the list . . .

location Center Phone Region Name
Birmingham, AL (800) 822-8816 3 ALUA - University of Alabama Hospital
Little Rock, AR (501) 202-1500 3 ARBH - Baptist Medical Center
Little Rock, AR (501) 364-1100 3 ARCH - Arkansas Children's Hospital
Little Rock, AR (501) 686-7000 3 ARUA - UAMS Medical Center
Phoenix, AZ (888) 908-5437 5 AZCH - Phoenix Children's Hospital
Phoenix, AZ (602) 839-7000 5 AZGS - Banner Good Samaritan Medical Center
Phoenix, AZ (480) 515-6296 5 AZMC - Mayo Clinic Hospital
Phoenix, AZ (602) 406-3000 5 AZSJ - St Josephs Hospital and Medical Center
Tucson, AZ (520) 694-6000 5 AZUA - University Medical Center, Univ of Arizona
San Diego, CA (858) 576-1700 5 CACH - Rady Children's Hospital and Health Center
Los Angeles, CA (323) 660-2450 5 CACL - Childrens Hospital Los Angeles
Los Angeles, CA (310) 423-5000 5 CACS - Cedars-Sinai Medical Center
La Jolla, CA (858) 455-9100 5 CAGH - Scripps Green Hospital
Duarte, CA (626) 255-4673 5 CAHP - City of Hope National Medical Center
Orange, CA (714) 456-6011 5 CAIM - University of California Irvine Medical Center
Torrance, CA (310) 222-2345 5 CALA - Harbor UCLA Medical Center
Loma Linda, CA (909) 558-3636 5 CALL - Loma Linda University Medical Center
Palo Alto, CA (650) 497-8000 5 CAPC - Lucile Salter Packard Childrens Hospital at Stanford
San Francisco, CA (415) 600-1000 5 CAPM - California Pacific Medical Center
Riverside, CA (951) 788-3000 5 CARC - Riverside Community Hospital
San Diego, CA (619) 543-6222 5 CASD - University of California San Diego Medical Center
San Francisco, CA (415) 353-1551 5 CASF - University of California San Francisco Medical Center
Sacramento, CA (800) 556-8133 5 CASG - Sutter Memorial Hospital
San Diego, CA (858) 939-3400 5 CASH - Sharp Memorial Hospital
Orange, CA (714) 633-9111 5 CASJ - Saint Joseph Hospital
Sacramento, CA (916) 734-2111 5 CASM - University of California Davis Medical Center
Stanford, CA (650) 723-4000 5 CASU - Stanford University Medical Center
Los Angeles, CA (213) 484-7111 5 CASV - St. Vincent Medical Center
Los Angeles, CA (800) 825-2631 5 CAUC - University of California at Los Angeles Medical Center
Los Angeles, CA (888) 700-5700 5 CAUH - University of Southern California University Hospital
Santa Ana, CA (714) 835-3555 5 CAWM - Western Medical Center
Aurora, CO (720) 777-1234 8 COCH - The Children's Hospital
Denver, CO (888) 872-8891 8 COPM - Centura Porter Adventist Hospital
Denver, CO (800) 758-1005 8 COSL - Presbyterian/St Lukes Medical Center
Aurora, CO (720) 848-0856 8 COUC - University of Colorado Hospital/Health Science Center
Hartford, CT (860) 545-5000 1 CTHH - Hartford Hospital
New Haven, CT (203) 785-2565 1 CTYN - Yale New Haven Hospital
Washington, DC (202) 476-5000 2 DCCH - Children's National Medical Center
Washington, DC (202) 444-3700 2 DCGU - Georgetown University Medical Center
Washington, DC (202) 877-7000 2 DCWH - Washington Hospital Center
Washington, DC (202) 782-1000 2 DCWR - Walter Reed Army Medical Center
Wilmington, DE (302) 651-4000 2 DEAI - Alfred I duPont Hospital for Children
Newark , DE (866) 682-6792 2 DECC - Christiana Care Health Services
St. Petersburg, FL (813) 898-7451 3 FLAC - All Children's Hospital
Ft. Lauderdale , FL (954) 355-4400 3 FLBC - Broward General Medical Center
Orlando, FL (407) 896-6611 3 FLFH - Florida Hospital Medical Center
Ft Myers, FL (239) 343-1000 3 FLFR - Gulf Coast Medical Center
Daytona Beach , FL (386) 947-4650 3 FLHM - Halifax Medical Center
Miami, FL (305) 585-8574 3 FLJM - Jackson Memorial Hospital University of Miami School of Medicine
Jacksonville, FL (904) 244-9800 3 FLJT - Shands Jacksonville
Jacksonville, FL (877) 404-6296 3 FLSL - Mayo Clinic Florida
Tampa, FL (800) 505-7769 3 FLTG - Tampa General Hospital
Gainesville, FL (800) 749-7424 3 FLUF - Shands Hospital at The University of Florida
Atlanta, GA (404) 785-1807 3 GAEH - Children's Healthcare of Atlanta at Egleston
Atlanta, GA (404) 712-2000 3 GAEM - Emory University Hospital
Augusta, GA (706) 721-0211 3 GAMC - Medical College of Georgia
Atlanta, GA (404) 605-5000 3 GAPH - Piedmont Hospital
Atlanta, GA (404) 851-7001 3 GASJ - Saint Joseph's Hospital of Atlanta
Honolulu, HI (808) 547-6011 6 HISF - Hawaii Medical Center- East
Des Moines, IA (888) 343-4164 8 IAIM - Iowa Methodist Medical Center
Iowa City, IA (319) 338-0581 8 IAIV - Iowa City VA Medical Center
Iowa City, IA (800) 777-8442 8 IAIV - University of Iowa Hospitals and Clinics and Iowa City VA Medical Center
Des Moines, IA (515) 247-3121 8 IAMH - Mercy Medical Center-Des Moines
Oak Lawn, IL (877) 684-4327 7 ILCH - Advocate Christ Medical Center
Chicago, IL (773) 880-4000 7 ILCM - Children's Memorial Hospital
Maywood, IL (708) 216-9000 7 ILLU - Loyola University Medical Center
Springfield, IL (800) 798-3011 7 ILMM - Memorial Medical Center
Chicago, IL (312) 926-2000 7 ILNM - Northwestern Memorial Hospital
Chicago, IL (312) 942-5000 7 ILPL - Rush University Medical Center
Peoria, IL (800) 635-1440 7 ILSF - OSF Saint Francis Medical Center
Chicago, IL (773) 702-3000 7 ILUC - University of Chicago Medical Center
Chicago, IL (312) 996-7000 7 ILUI - University of Illinois Medical Center
Indianapolis, IN (800) 510-2725 10 INIM - Clarian Health- Methodist/IU/Riley
Ft Wayne, IN (800) 444-2001 10 INLH - Lutheran Hospital of Fort Wayne
Indianapolis, IN (317) 338-2345 10 INSV - St Vincent Hospital and Health Care Center
Wichita, KS (316) 268-0070 8 KSFW - Via Christi Regional Medical Center, St Francis Campus
Kansas City, KS (913) 588-5000 8 KSUK - University of Kansas Hospital
Louisville, KY (502) 587-4011 11 KYJH - Jewish Hospital
Louisville, KY (502) 629-6000 11 KYKC - Kosair Children's Hospital
Lexington, KY (866) 285-4337 11 KYUK - University of Kentucky Medical Center
New Orleans, LA (504) 899-9511 3 LACH - Children's Hospital
New Orleans, LA (504) 842-3925 3 LAOF - Ochsner Foundation Hospital
New Orleans, LA (504) 988-5263 3 LATU - Tulane Medical Center
Shreveport, LA (318) 212-4000 3 LAWK - Willis-Knighton Medical Center
Boston, MA (800) 535-3555 1 MABI - Beth Israel Deaconess Medical Center
Springfield, MA (413) 794-2321 1 MABS - Baystate Medical Center
Boston, MA (617) 638-8000 1 MABU - Boston Medical Center
Boston, MA (617) 355-6000 1 MACH - Children's Hospital
Burlington, MA (781) 744-2500 1 MALC - Lahey Clinic Medical Center
Boston, MA (617) 726-2000 1 MAMG - Massachusetts General Hospital
Boston, MA (617) 636-8228 1 MANM - Tufts Medical Center
Boston, MA (617) 732-5500 1 MAPB - Brigham and Women's Hospital
Worcester, MA (508) 334-1000 1 MAUM - University of Massachusetts Memorial Medical Center
Baltimore, MD (410) 955-5000 2 MDJH - Johns Hopkins Hospital
Baltimore, MD (410) 328-6363 2 MDUM - University of Maryland Medical System
Portland, ME (207) 662-0111 1 MEMC - Maine Medical Center
Royal Oak, MI (248) 898-5000 10 MIBH - William Beaumont Hospital
Detroit, MI (313) 745-5481 10 MICH - Children's Hospital of Michigan
Grand Rapids, MI (866) 989-7999 10 MIDV - Helen DeVos Children's Hospital
Detroit, MI (313) 916-2600 10 MIHF - Henry Ford Hospital
Detroit, MI (313) 745-8040 10 MIHH - Harper University Hospital Detroit Medical Center
Detroit, MI (313) 343-3047 10 MISJ - St John Hospital and Medical Center
Grand Rapids, MI (616) 685-5000 10 MISM - St. Mary's Health Care - Main Hospital
Ann Arbor, MI (734) 936-4000 10 MIUM - University of Michigan Medical Center
Minneapolis, MN (612) 863-4000 7 MNAN - Abbott Northwestern Hospital
Minneapolis, MN (612) 873-2810 7 MNHC - Hennepin County Medical Center
Rochester, MN (507) 266-7890 7 MNMC - Rochester Methodist Hospital (Mayo Clinic)
Rochester, MN (507) 284-2511 7 MNSM - Saint Marys Hospital (Mayo Clinic)
Minneapolis, MN (612) 273-3000 7 MNUM - University of Minnesota Medical Center, Fairview
St. Louis, MO (314) 747-3000 8 MOBH - Barnes-Jewish Hospital
St. Louis, MO (314) 577-5600 8 MOCG - Cardinal Glennon Children's Hospital
St Louis, MO (877) 578-4449 8 MOCH - St. Louis Children's Hospital at Washington University Medical Center
Kansas City, MO (800) 512-2168 8 MOCM - Children's Mercy Hospital
Kansas City, MO (816) 932-2000 8 MOLH - St Luke's Hospital of Kansas City
Kansas City, MO (816) 822-8257 8 MORH - Research Medical Center
St Louis, MO (314) 577-8000 8 MOSL - Saint Louis University Hospital
Columbia, MO (573) 882-4141 8 MOUM - University of Missouri Hospital and Clinics
Jackson, MS (601) 984-1000 3 MSUM - University of Mississippi Medical Center
Winston Salem, NC (336) 716-2011 11 NCBG - North Carolina Baptist Hospital
Charlotte, NC (704) 355-2000 11 NCCM - Carolinas Medical Center
Durham, NC (919) 684-8111 11 NCDU - Duke University Hospital
Greenville, NC (252) 847-4100 11 NCEC - Pitt County Memorial Hospital, East Carolina University School of Medicine
Chapel Hill, NC (888) 263-5293 11 NCMH - University of North Carolina Hospitals
Bismarck, ND (800) 932-8758 7 NDMC - Medcenter One Health Systems
Fargo, ND (701) 234-6000 7 NDSL - MeritCare Hospital
Omaha, NE (800) 401-4444 8 NEUN - The Nebraska Medical Center
Lebanon, NH (603) 653-3931 1 NHDH - Mary Hitchcock Memorial Hospital
Newark, NJ (973) 926-7000 2 NJBI - Newark Beth Israel Medical Center
Hackensack, NJ (201) 996-2000 2 NJHK - Hackensack University Medical Center
Camden, NJ (856) 757-3500 2 NJLL - Our Lady of Lourdes Medical Center
New Brunswick, NJ (888) 447-9584 2 NJRW - Robert Wood Johnson University Hospital
Livingston, NJ (888) 409-4707 2 NJSB - Saint Barnabas Medical Center
Newark, NJ (973) 972-6000 2 NJUH - University Hospital
Albuquerque, NM (505) 272-2111 5 NMAQ - University Hospital, University of New Mexico Health Sciences Center
Albuquerque, NM (505) 841-1234 5 NMPH - Presbyterian Hospital
Las Vegas, NV (702) 383-2000 5 NVUM - University Medical Center of Southern Nevada
Albany, NY (518) 262-3125 9 NYAM - Albany Medical Center Hospital
Buffalo, NY (716) 859-5600 9 NYBU - Buffalo General Hospital/ Children's Hospital
New York, NY (212) 305-2323 9 NYCP - NY Presbyterian Hospital/Columbia Univ. Medical Center
Brooklyn, NY (718) 270-1000 9 NYDS - State University of New York, Downstate Medical Center
Buffalo, NY (716) 898-3000 9 NYEC - Erie County Medical Center
Rochester, NY (585) 275-2121 9 NYFL - Strong Memorial Hospital, University of Rochester Medical Center
Bronx, NY (718) 920-4321 9 NYMA - Montefiore Medical Center
New York, NY (212) 241-6500 9 NYMS - Mount Sinai Medical Center
Manhasset, NY (516) 472-5800 9 NYNS - North Shore University Hospital
New York, NY (212) 746-5000 9 NYNY - New York-Presbyterian Hospital/ Weill Cornell Medical Center
Stony Brook, NY (631) 689-8333 9 NYSB - University Hospital of State University of New York at Stony Brook
New York, NY (212) 523-4000 9 NYSL - St. Luke's Roosevelt Hospital Center
New York, NY (212) 263-7300 9 NYUC - New York University Medical Center
Syracuse, NY (315) 464-5540 9 NYUM - State University of New York Upstate Medical University
Valhalla, NY (914) 493-7000 9 NYWC - Westchester Medical Center
Cleveland, OH (216) 444-2200 10 OHCC - The Cleveland Clinic Foundation
Columbus, OH (614) 722-2000 10 OHCH - Nationwide Children's Hospital
Cincinnati, OH (800) 344-2462 10 OHCM - Children's Hospital Medical Center
Toledo, OH (419) 383-4000 10 OHCO - University of Toledo Medical Center
Dayton, OH (937) 208-8000 10 OHMV - Miami Valley Hospital
Columbus, OH (614) 293-8000 10 OHOU - Ohio State University Medical Center
Cincinnati, OH (513) 585-2000 10 OHTC - The Christ Hospital
Cincinnati, OH (513) 584-1000 10 OHUC - University of Cincinnati / University Hospital
Cleveland, OH (800) 844-2273 10 OHUH - University Hospitals of Cleveland
Oklahoma City, OK (405) 949-3011 4 OKBC - Integris Baptist Medical Center
Oklahoma City, OK (405) 271-5437 4 OKCM - Children's Hospital of Oklahoma
Oklahoma City, OK (405) 271-5656 4 OKMD - OU Medical Center
Oklahoma City, OK (405) 272-7000 4 OKSA - St. Anthony Hospital
Tulsa, OK (918) 494-2200 4 OKSF - Saint Francis Hospital
Tulsa, OK (918) 744-2345 4 OKSJ - St John Medical Center
Portland, OR (503) 229-7711 6 ORGS - Legacy Good Samaritan Hospital and Medical Center
Portland, OR (503) 215-1111 6 ORPM - Providence Portland Medical Center
Portland, OR (800) 452-1369 6 ORUO - Oregon Health and Science University/ Portland VA Medical Center
Portland, OR (503) 220-8262 6 ORUO - Portland Veterans Administration Medical Center
Philadelphia, PA (215) 456-7890 2 PAAE - Albert Einstein Medical Center
Pittsburgh, PA (412) 359-3131 2 PAAG - Allegheny General Hospital
Pittsburgh, PA (412) 692-5325 2 PACH - Children's Hospital of Pittsburgh of UPMC
Philadelphia, PA (800) 879-2467 2 PACP - Children's Hospital of Philadelphia
Danville, PA (877) 821-8613 2 PAGM - Geisinger Medical Center
Hershey, PA (717) 531-8521 2 PAHE - Penn State Milton S Hershey Medical Center
Harrisburg, PA (877) 778-6110 2 PAHH - Pinnacle Health System at Harrisburg Hospital
Philadelphia, PA (215) 762-7000 2 PAHM - Hahnemann University Hospital
Wynnewood, PA (610) 645-2000 2 PALH - The Lankenau Hospital
Allentown, PA (610) 402-8000 2 PALV - Lehigh Valley Hospital
Pittsburgh, PA (877) 640-6746 2 PAPT - University of Pittsburgh Medical Center
Philadelphia, PA (215) 427-5000 2 PASC - St. Christopher's Hospital for Children
Philadelphia, PA (215) 955-6000 2 PATJ - Thomas Jefferson University Hospital
Philadelphia, PA (215) 707-2000 2 PATU - Temple University Hospital
Philadelphia, PA (215) 662-4000 2 PAUP - Hospital of the University of Pennsylvania
Pittsburgh, PA (412) 688-6155 2 PAVA - VA Pittsburgh Healthcare System
Wilkes-Barre, PA (800) 645-1228 2 PAWV - Geisinger Wyoming Valley Medical Ctr
San Juan, PR (787) 754-8500 3 PRCC - Cardiovascular Center of Puerto Rico and the Caribbean
Hato Rey, PR (787) 758-2000 3 PRSJ - Auxilio Mutuo Hospital
Providence, RI (401) 444-4000 1 RIRH - Rhode Island Hospital
Charleston, SC (843) 792-2300 11 SCMU - Medical University of South Carolina
Sioux Falls, SD (605) 322-7350 7 SDMK - Avera McKennan Hospital
Sioux Falls, SD** (605) 328-9290 7 SDSV - Sanford Health/USD Medical Center
Memphis, TN (901) 226-2000 11 TNBM - Baptist Memorial Hospital
Chattanooga, TN (423) 778-7000 11 TNEM - Erlanger Medical Center
Johnson City, TN (423) 431-6111 11 TNJC - Johnson City Medical Center Hospital
Memphis, TN (901) 572-3000 11 TNLB - Le Bonheur Children's Medical Center
Memphis, TN (901) 516-7000 11 TNMH - Methodist University Hospital
Nashville, TN (615) 342-1000 11 TNPV - Centennial Medical Center
Nashville, TN (615) 222-2111 11 TNST - Saint Thomas Hospital
Knoxville, TN (865) 305-9000 11 TNUK - University of Tennessee Medical Center at Knoxville
Nashville, TN (615) 327-4751 11 TNVU - Nashville Veterans Administration Hospital
Nashville, TN (615) 873-6373 11 TNVU - Vanderbilt University Medical Center and Nashville VA Medical Center
Fort Worth, TX (800) 774-2487 4 TXAS - Baylor All Saints Medical Center
San Antonio, TX (210) 567-5777 4 TXBC - University Hospital, University of Texas Health Science Center
Fort Worth, TX (682) 885-4000 4 TXCF - Cook Children's Medical Center
San Antonio, TX (210) 575-7000 4 TXCH - Methodist Children's Hospital of South Texas
Dallas, TX (214) 456-7000 4 TXCM - Children's Medical Center of Dallas
Austin, TX (877) 377-3866 4 TXCT - Seton Medical Center
Corpus Christi, TX (800) 324-5683 4 TXDC - Driscoll Children's Hospital
Austin, TX (512) 901-1000 4 TXDM - North Austin Medical Center
Fort Worth, TX (817) 882-2000 4 TXFW - Texas Health Harris Methodist Fort Worth Hospital
Dallas, TX (972) 566-7199 4 TXHD - Medical City Dallas Hospital
Houston, TX (713) 704-4000 4 TXHH - Memorial Hermann Hospital, University of Texas at Houston
Houston, TX (713) 785-8537 4 TXHI - St Luke's Episcopal Hospital
San Antonio, TX (210) 575-8110 4 TXHS - Methodist Specialty and Transplant Hospital
Galveston, TX (409) 772-0533 4 TXJS - University of Texas Medical Branch at Galveston
Lubbock, TX (866) 364-0710 4 TXLG - University Medical Center
El Paso, TX (915) 521-1828 4 TXLP - Las Palmas Medical Center
McAllen, TX (956) 632-4000 4 TXMA - McAllen Medical Center
Dallas, TX (214) 947-1800 4 TXMC - Methodist Dallas Medical Center
Houston, TX (713) 394-6000 4 TXMH - The Methodist Hospital
Dallas, TX (214) 590-8000 4 TXPM - Parkland Memorial Hospital
San Antonio, TX (800) 481-4800 4 TXRM - Christus Santa Rosa Medical Center
Dallas, TX (214) 645-5555 4 TXSP - University Hospital - St. Paul
Temple, TX (254) 724-2111 4 TXSW - Scott and White Memorial Hospital
Houston, TX (832) 824-1000 4 TXTC - Texas Children's Hospital
Dallas, TX (214) 820-0111 4 TXTX - Baylor University Medical Center
Tyler, TX (903) 597-0351 4 TXTY - East Texas Medical Center
Houston , TX (713) 794-7982 4 TXVA - Michael E. DeBakey VA Medical Center
Murray, UT (866) 439-0480 5 UTLD - Intermountain Medical Center
Salt Lake City, UT (801) 581-2121 5 UTMC - University of Utah Medical Center
Salt Lake City, UT (800) 909-7262 5 UTPC - Primary Children's Medical Center
Norfolk, VA (757) 668-7000 11 VACH - Children's Hospital of the King's Daughters
Falls Church, VA (703) 776-4001 2 VAFH - Inova Fairfax Hospital
Richmond, VA (804) 289-4500 11 VAHD - Henrico Doctors' Hospital
Richmond, VA (804) 828-9000 11 VAMC - Medical College of Virginia Hospitals
Richmond, VA (804) 675-5000 11 VAMV - Hunter Holmes McGuire Veterans Administration Medical Center
Norfolk, VA (757) 388-3934 11 VANG - Sentara Norfolk General Hospital
Charlottesville, VA (434) 924-0211 11 VAUV - University of Virginia Health Sciences Center
Burlington, VT (802) 656-2345 9 VTMC - Fletcher Allen Health Care
Seattle, WA (866) 987-2000 6 WACH - Seattle Children's Hospital
Spokane, WA (800) 667-0502 6 WASH - Sacred Heart Medical Center
Seattle, WA (206) 386-6000 6 WASM - Swedish Medical Center
Seattle, WA (206) 598-3300 6 WAUW - University of Washington Medical Center
Seattle, WA (800) 354-9527 6 WAVM - Virginia Mason Medical Center
Milwaukee, WI (877) 266-8989 7 WICH - Children's Hospital of Wisconsin
Milwaukee, WI (414) 259-3000 7 WISE - Froedtert Memorial Lutheran Hospital
Milwaukee, WI (800) 363-2393 7 WISL - Aurora St. Luke's Medical Center
Madison, WI (608) 263-6400 7 WIUW - University of Wisconsin Hospital and Clinics
Charleston, WV (304) 388-7823 2 WVCA - Charleston Area Medical Center


* All transplant centers are designated by the Organ Procurement and Transplantation Network.
**Indicates that a center or transplant programs that have become inactive. Reasons for an inactive status may include: departures or change in the participation level of the recognized primary physician or surgeon; institution financial concerns; functional inactivity; and, to conduct internal review of outcomes data. For additional information, contact the center or program directly.
Posted 10/31/2010 7:08 AM (GMT 0)
Thank you so much for your posts! I found the Healingwell forum by accident while I was looking up her diagnosis. I want to thank all of you for sharing your personal experiences. I started reading the posts the day after I was told about her condition. If you hadn't shared your stories I would still be in the dark. I'm not very good with the whole computer thing so I hope this post will reach all of you that replied to mine, if not I apologize and will try to figure out how. When I posted last night I tried to keep it short so I kept deleting parts. I guess I should have left in that my mom was told of the cirrhosis in 98 (maybe a little sooner) and continued to drink. She lost her husband in 99 and the drinking got worse. She's a Brittle diabetic so you can imagine how high her blood sugar was. I was the one now making her Dr. appointments and taking her to them. I am so mad...not one time over the years did any Dr. or ER Dr.(and I was at the ER a lot) ever tell me that she should see a hematologist or blood Dr. of any kind... they all brought up the cirrhosis... but were more concerned with the diabetes being uncontrollable and worried that her kidneys would fail in a couple of years. She finally stopped drinking in March of 07 when her blood sugar went over 1200 and she began seizing in her apartment (she lived alone in a senior's complex). My mom and I were extremely close and talked or seen each other everyday. When I called her that day she didn't answer, I waited a couple of hours and still no answer...called her friend down the hall and she said she went to my moms in the morning and she wasn't feeling well, she just wanted to sleep. I called my ex sister-in-law (we're still very close) asked her check on mom and call me when she got there...her first call was to 911 and I was the second call. When I got to the hospital they needed to put her on a ventilator and wanted to know her wishes. She was in a coma for 9 days. My sister asked me what I was going to do... we knew she wouldn't want to live off machines. I said that the machines would be turned off on Monday so family could say goodbyes. On Sunday one of the docs doing rounds told her to open her eyes and by the grace of God she did. That's when she stopped drinking. The Dr. that did the upper GI wasn't her regular Dr. The doctor she had never even suggested a GI doctor or a hematologist and knew all along about the cirrhosis. The resident Dr. at the hospital ordered the testing because they couldn't get the vomiting to stop. If I hadn't read your posts I would have never known to ask for the lactulose or ammonia levels. I am making an appointment with a hematologist first thing Monday morning. My mom isn't a candidate for a liver transplant...she's a Brittle Diabetic and smokes, when she's awake. We've tried to get her to quite but she said she gave up drinking and isn't giving up her cigarettes. Lately she thinks she's smoking and the cigarette isn't even lit. Today has been another bad day, she finally got up about 3pm and doesn't really want to eat or drink. She's not getting half the meds she should because she's either not awake or the timing is off...today up about 3pm and just taking morning dose around 4pm. We can't even sneak the lactulose because she's not really drinking. New Dr. coming Monday. We are going to ask for another ammonia level and a MELD score. Thanks again for listening/reading. I promise to make them shorter now. You're all in my thoughts and prayers
Posted 10/31/2010 1:04 PM (GMT 0)

 

Calendar Girl,

 

A Hematologist is a blood doctor, a Hepatologist is a liver doctor.  You cannot simply make an appointment with a hepatologist.  This is arranged via referral to a liver transplant center.

 

Regardless of whether or not your Mother is a candidate for a liver transplant, the hepatologist specializes in treating the symptoms of cirrhosis and ESLD.  There are a number of medications that can help her. 

 

My husband went to Shand’s hospital in Gainesville for five years before being turned down for transplant.  They refused to accept the risk associated with his cardio-vascular disease and would not list him for a transplant.  I was aware that Florida Hospital in Orlando began doing liver transplants, so the next time he had a medical emergency (Ascites collapsed his right lung) I rushed him to Florida Hospital.  I asked for a consultation with the liver transplant unit and got one.  They nursed him along for three months and listed him for transplant.  He received a liver transplant January 21, 2009.

 

If you’ve not received a referral to a liver transplant center, take here to a center via their emergency room.  The ER docs will likely call in the transplant team to assist with the ESLD symptoms she is experiencing.  If not, request that they do so.

 

Good luck and God bless you.

 

Penny

Posted 10/31/2010 2:15 PM (GMT 0)
Calendar Girl,
Thank God for Google and internet search engines. That is how I also found this group. They have been a lifesaver to me. I too would never have known about lactulose or many other things if I hadn't found all the knowledgable people here. Hospital employees & emergency medical technicians with little knowledge of liver disease & encephalopathy often mistake the symptoms for other things. My husband was hosptialized awhile back for high ammonia levels. From the knowledge I gained here I was able to tell the doctors what I thought was going on, of course they had to run tests to confirm. The med techs with the ambulance looked at me like I was speaking a foriegn language when I told him what I thought They even had me afraid that he was going into a diabetic coma.

I am so glad you found us.
Posted 10/31/2010 7:38 PM (GMT 0)

 

Calendar Girl,

 

I would suggest you research Islet transplantation.  I realize your Mother’s liver is damaged, but it seems they are transplanting Islets into a patient's arm when the liver is in poor condition.

http://www.methodisthealth.com/mtc.cfm?id=35469

 

This could help resolve the brittle diabetes.  Perhaps then she could be considered for liver transplantation.  However, if you Mother is not willing to quit smoking, she is not demonstrating a wiliness to fight.  This is factored into any transplant scenario.

 

Regardless, a qualified hepatologist can help alleviate some of the symptoms she is experiencing and perhaps make her more comfortable. 

 

You have your hands full.  It's always harder when you have to deal with a stubborn patient.  I hope you find some comfort here.  You are in my thoughts and prayers.

 

Penny

Posted 10/31/2010 9:00 PM (GMT 0)

Penny, that's very interesting about the Islet transplant.  However, I wonder if they would do it for someone with liver disease?

Calendar Girl, I hope you come back and read the posts to you.  It's correct that it's a hepatologist your mom needs a referral to, not a hematologist.  I still think the best way to achieve this is to take her to the ER of a hospital with a transplant center.

Hugs,

Connie

Posted 10/31/2010 10:40 PM (GMT 0)
All: Boy, you never know what you can learn just reading the posts on this site. If hubby has another emergency, and it isn't life threatening, I'm taking him right to UMiami ER. That way we'd get to the experts on the case more quickly. Our process took weeks and took the advocacy of both our cardiologist and hematologist to get moving. They wanted hubby to wait until Mid December for an appointment and when we went down to UMiami on October 24th his MELD score was 24! They sat up and paid attention QUICKLY.

Calendar Girl, this site has saved my from the bottom of dispair. I still have low moments and everyone encourages me. But today I feel strong and ready...

Mama Lama
Posted 10/31/2010 11:04 PM (GMT 0)
  Connie,   I found the information on the Methodist Transplant Center of Huston’s webpage.   I provided the link.   It is an amazing read and should give hope to countless diabetics out there.   Dr Osama Gabar, Director of the Islet Laboratory said, “Islet transplants offer a promising cure for diabetes.   We are thrilled to bring a laboratory for this innovative treatment to Houston .”   According to the articles, Islets are usually transplanted into a patient’s liver.   But they successfully transplanted Islets into a woman’s forearm because she had indications of slight liver damage prior to surgery.   I don’t know what limitations they operate under, but it should of great interest to those suffering with diabetes.   Penny
Posted 11/1/2010 3:35 AM (GMT 0)

Absolutely.  And if they don't have to implant the Islets in the liver, so much the better for patients with both liver disease and diabetes.

Hugs,

Connie

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