Meet Some Of
Our PBCers Who Received
The Gift Of
Life
CAROL WALDNER
In
1976, in a routine physical, I was told my Alk Phos was elevated. A series of doctors scratched their respective
heads and ordered numerous tests with no definitive diagnosis. A liver biopsy brought a diagnosis of
"granulomitis hepatitis."
The itching started in the eighties. Many more tests and another biopsy
still offered no diagnosis other than the above. In 1990 I jaundiced and sought help at
Other
than the wild itching, I was lucky to have few other problems until the fall of
92 when I noticed my eyes turning yellow along with my skin. At that
check up I heard the word "transplant" for the first time and things
went downhill fast. I was evaluated
in Feb. 93, listed in March and txed 37 days later at age 72 on Easter
Sunday. My gift of life came from
an eleven year old girl.
I
had a bout of rejection before discharge and was treated with steroids. Went home on the fifth day after surgery
feeling great. At four months had
another rejection episode and this too was treated successfully with steroids. Other than a bad case of Shingles, I am
astoundingly well. I take Prograf,
Fosomax, Nexium and Insulin for Med induced Diabetes. I feel I am in good hands
with my tx team at Mayo and my local docs.
So
here I am at 74 alive and well and grateful for my good fortune!
__________________________________________________________
CONNIE J. WIRTHLIN
58
yrs
DIAGNOSIS: PSC
Oct. 1988:
No symptoms; increased liver
enzymes picked up in CBC for life insurance application
Diagnosis made thru liver biopsy.
August
1997 – October 2003:
Experienced
many side effects and condition gradually worsened. After Hepatic Coma with
Encephalopathy
in July 2003, MELD was finally a 7 and was put on Transplant List at University
of Colorado Hospital in
One
of my friends, Kris Leonard, came to me with "I am your blood type and I
am going to be tested to be your donor". By the end of February 2004 she was
pronounced "qualified Donor".
Scheduled the tx like any other surgery & everything went like
clockwork; no problems except Kris and the pain med's didn't get along and it
took a few days to find one that didn't make her sick. She was out of the hospital in 6 days and
I was out in 8. We stayed in 2
apartments in
I
now have a large right lobe for a liver and she has a large left lobe. She is minus one small bile duct (I have
it!!) and she was back to work in 6 wks.
I was back to work as soon as I got home. (Office in home) The folks at UCH do the most (I
think) live donor liver tx's and have a wonderful success rate. The whole program is great; from the
Hepatology doc's, to the surgeons, to the residents, to the nurses and
aids.
MAJOR
COMMENT:
It
is just too bad that live donor transplants aren't publicized more than they
are. I know not all people are in a
physical condition to receive one but I truly believe more lives would be saved
if this type of transplant were more widely known.
__________________________________________________
DENISE
My
initial dx by liver bx in 2001 was hepatic
failure due to AIH and overlapping PBC.
I had been working in acute care as an RN since 1978, but the fatigue
and symptoms and stress from my husband passing away forced me to
discontinue work. I have two children, 17 and 19. My local hepatologist advised me to see
the transplant team at Shands in
Denise
Until
early 2002, I had no idea that the liver was the only vital organ that could
regenerate itself. My initial
thoughts of organ donation brought back images of the old Woody Allen movie Sleeper and the scenes of the cloning
process of the nose. It was 37 years
ago when I first met Denise and her family ˆ she was 11 and I was 20. I bought my first car ˆ a red 1962
VW convertible - from her father, and I painted their family house as a job
that summer before going back to college.
I kept in touch with the parents over the years and visited them
periodically at their home in
Victor
DIANA
tx:
March 18, 1990
Sept.
10, 2005
I
was born in
In
1980 at the age of 28 I noticed my first symptoms of liver disease.
In
1983 I had our second daughter, Haley.
In
1985 we moved to
In
1989 I was finally diagnosed with PBC and a few months later was
put on the transplant list.
There
were 11 of us on the list at the time and I was the only person with type A blood so I was first in line for my blood type.
In
1990, at the age of 38 I had my transplant after being on the transplant list
for only a week. It was a very difficult recovery and I spent 5 months
hospitalized. Besides having CMV and possible meningitis, I also managed to
wind up with a paralyzed leg. I had a year of physical therapy before I could
walk without a brace and have been left with permanent nerve damage pain in my
lower leg and foot but I can walk and run now.
After
spending the first year recovering from my transplant it's been pretty smooth
sailing. I was weaned off of cyclosporine after 4 years and now only take 9mg.
prednisone and 75 mg. imuran daily. I also take Fosamax
for osteoporosis, vitamins and something for nerve damage pain. I can't say
that I have as much energy as I'd like to have but I have enough. I don't work.
I love to travel and my favorite things to do
are snorkel and play tennis.
My
girls are now 27 and 22. They no longer live at home but I get to see them a
lot and I'm happiest when we're all together. I'm so proud of the young ladies
they've become and am so grateful that I've been
granted all of these extra years of life.
I’m expecting my first grandchild in a few months (mid-Dec. 2005).
Life
is great!
_______________________________________________
DIANNE HOWELL
I
was diagnosed in 1992 though my liver test numbers had been abnormal since
1985. I was finally sent to the liver specialist who figured it out with tests.
I had Primary Sclerosing Cholangitis. In 1990 my specialist tentatively
diagnosed me with Autoimune Chronic Active Hepatatis or Lupus. I was diagnosed
with Lupus in 1991 by my Rheumatologist.
Once an ERCP showed Sclerosing Cholangitis in 1992 the other diagnosis
was not discussed though we knew I didn't just have PSC that something else was
going on in my liver. Another doctor on the Transplant team added the ACA
Hepatitis to my diagnosis and both diseases showed up on my hospital chart.
I
was transplanted in August 2003 in
Thought
I would add that I have been married for 41 years. I have two children 40 and
38 and three grandchildren 16, 15 and 11. I will be 60 on the 18th of this
month. I have 4 cats and a kitten.
DONNA BIAS
My name is Donna and I am 56 years old and had my transplant
at age 45. I live along the
I was diagnosed with PBC in 1991. I first went to an urgent care facility
for the severe itching and was told I had scabies – ha! After a couple of weeks of treatment, I
called them to say I was still itching.
I was told to do the treatments again. After a couple more weeks of no relief,
I went back to their office and they told me to see a dermatologist. My family physician had been out of town
during this time, but finally was able to see him. After I told him of the itching, he took
one look and told me I was jaundiced and suspected a gallbladder blockage and
admitted me to the hospital that day.
By the next day, he had lab results and called in a
gastroenterologist. This doctor did
a brief exam and told me I had cancer or cirrhosis of the liver. After a number of tests and a liver
biopsy, PBC was confirmed. While in
the hospital, and on the day of my 25th wedding anniversary, I was
told I had 2 years to live. What a
shock when you didn’t even know you were sick – just itching.
Along with the severe itching night and day, my spleen was
as large as a football, which was due to the restricted blood flow in the liver
forcing the blood into the spleen.
This made it painful to eat very much at one time due to the pressure on
my stomach. Also, the spleen was
“eating” up my platelets, which caused severe hemorrhaging every
month during my periods. I had a
lot of nose bleeds too. At one
point, my platelet count was so low they were afraid my brain would
hemorrhage. The fatigue was so bad
that I would fall asleep sitting at traffic lights.
The gastro doctor gave me a choice of several transplant
centers. I chose the
After dealing with the normal PBC disorders, in September
1996, I began experiencing pain near the center of my abdomen – not the
right pain which was my liver, and not the left side which was my spleen. I was admitted to the transplant
hospital and found the pain was due to gallstones. Since my liver numbers were going up, I
was asked to stay in the hospital to wait for a liver. Also, it was the Labor Day weekend and
usually an indication of more accidents allowing organs to be available. I waited one week and they did triple
the number of liver transplants that week, but there was no match for me or
there were others who needed it more.
On the 7th day I was told I was a backup for a liver. Later that day I was told the liver was
mine because the person it was intended for was too unstable for surgery. My surgeon told me the liver had arrived
late and testing had not been completed, so I was sent to the operating room
for the preliminary procedures, anesthesia, incisions under arm and groin,
etc., everything except for the major incision to remove the liver. I later woke up in ICU without the liver
because it was too old to transplant by the time the tests were completed.
I was then told another liver was on its way, but did not
get it either because the person I was a backup for earlier was now stable
enough for the surgery. On the
third day, I was told another liver was on the way. The liver arrived but was severely
lacerated from the retrieval process.
Since it was a young, healthy liver, my surgeon repaired the lacerations
and proceeded with the transplant.
There were some lacerated areas that were not detected until all ducts
were connected. The surgeon then
did more repair work on the liver and I was packed with an absorbent material
due to the excess liver bleeding, and given 20 units of platelets. Two weeks later I had another surgery to
remove a large hematoma near the liver that was causing pain. This “chopped” liver has
worked very well since that time, except for a year after my transplant, my
liver numbers started going up. The
liver biopsy was inconclusive as to whether it was rejection or reoccurring PBC
so I was treated for both. During
the past 11 years, medications have been fine tuned and gradually the liver
numbers have returned to normal.
I went back to work 3 months following my transplant and
probably haven’t missed more than 11 days of work in 11 years. Praise the Lord!
Donna
–
___________________________________________________________
GLENDA
My
name is Glenda Rosenbloom. My husband Alan and I live in
I
went on UCLA list in May of 99. My sister tried twice to be my donor but was
refused both times. After having been on the list for 19 months and having UCLA
say it would be another 12-18 months, I decided to look elsewhere. I picked
Mayo in
I
had a rejection episode in Jan of 02 when they switched me to cyclosporine and
my body didn't like it. They flooded me with steroids, put me back on Prograf,
and I had no more problems.
Didn't
have another bump until they took me off Pred. They tapered me from 5mg,
cutting it 1 mg per month. I was Ok until I hit 3mg and I began to suffer from
total exhaustion. I was off Jan of 03 and got some more energy. But I'm still
not recovered. I was told it could take 6 to 8 months. I also have recently
been having trouble with my joints. They are swollen and sometimes painful. I
was told this was because Pred is an anti-inflamatory and this is body's
reaction to not having it.
I
did some research and found if adrenal glands do not function well, you do not
have natural cortisone and your body suffers fatigure. Also found that bone marrow
will not produce enough white blood cells, if it has a zinc deficiency. So I
asked them to test for zinc in April, and sure enough, I was low. So they said
just to take an OTC dose once a day.
I got instant energy but then that tapered off. My GI told me,
he’s had other patients go off steroids and they have the same problem.
It's a matter of time. And I've got that. Plus I'm determined to stay off it.
I'm
now 26 months post tx. I've gone on trips, do yoga twice a week, do organ donor
events, garden and walk the little dog. Alan and I like to go to movies and
plays. Just saw Confidence and Identity which were both good movies.
_________________________________________________________________
JOANNE CATHCART
My
transplant was 12/05/03 Two
days after Joan Dale's. . When
I was admitted to Lahey I was considered alert and oriented and in no acute
distress, (meaning I knew where I was and why I was there.) Otherwise I
was basically in an encephalitic stupor.).
My lungs and heart were fine, my belly wasn't swollen from ascites (I
had very little ascites) but in my extremities I had extremely
edema.
My
last labs were as follows.Alpha- fetaprotein was 7 and normal, white count of
6, hematocrit 27.4, platelets 110,
Creatinine 1.7, ( winthin 30
days it went from 0.6 to the 1.7)Bun was 10, Albumin was 2.3, AST 355, ALT 175,
alkaline phosphatese 98, and total bilirubin was 6.9.. This should give you all a guide
as to where you are in the scheme of PBC. I had been
diagnosed with my PBC in 1982.. My edema worsened to the stage that I was
actually leaking fluid with bile from my pores. My last ultrasound in 2003
prior to transplant showed I continued to have a small mass in the left lateral
segment of my liver ( it stayed the same throughout the past 6 months and I was
given ultrasounds monthly to watch it.). Also showed ascites (
not bad) and a patent portal vein (varices). My overall physical health
history was ... portal hypertension, esophageal varices, Dystonia (another very
unpleasant neural muscular disease), upper GI bleed from varices in 1995,
autoimmine disease Sjogren's syndrome, I at that time had depression for which
I was on medication,(Lexapro) anxiety attacks ( wonder why ha ha), increased
lipids and last of all
asthma.
My
meds were Aldactone 100 MG twice a day and Lasix both for the edema,
Atarax (itching), propranolol for blood pressure (hypertension), Actigall,
Advair and Albuteral for the asthma, lactulose for edema and supplements of
Q10, basic complete vitamin and a B Complex, Vitamin K, and Primrose Oil
for my skin. I did/do
not smoke nor drink
alcohol.
Finally
a suitable don or was found for
So
I was then also under infectious disease doctors. I j ust kept adding more and more
doctors to my day. For this I was
put on voriconazale and Valcyte. By
Jan 1st my mental status was improving greatly although I still had problems. I
was alert and knew where I was then but still "drifted off" to parts
unknown. On day 27 post op I went
off to acute rehab for two weeks.
This was probably the hardest part for me emotionally as my husband
couldn't stay in my room there as this time I had a roommate. Prior to that my husband never left my
side.he slept in a chair until they found a chair then opened to a bed for him.
He did most of the personal care for me.
Bathed me, washed my hair, brushed my teeth .everything as I was unable
to do anything at that time from the mental problems side effect of the
Prograff. I remember he would put
me in the wheelchair and push me around the hospital when visitors left and took
me to the cafeteria for cocoa. Bundled me up with blankets and took me
outdoors. That was wonderful! In rehab I had to learn to use a walker
as my left foot was still the size of a football and was extremely
painful. The nerve endings were
sensitive. I had and still have
slight neuropathy., on both feet and hands. I also learned how to do all sorts of
basic things.even to write, and to speak better. (When I got home I
read the dictionary for hours every day)
Finally
I got to go home.what a happy day that was for me! YEAH! I had no idea what my home looked
like, all I remembered was I lived on a mountain top and had lots of land, and
three cats waiting at home. Before
I finish here I want to tell you all that Christmas day was the first day I was
aware of the world.and that is when my husband gave me a box stuffed with your
wonderful cards. I can't ever tell
you just how much that meant to me and how much it helped me to get better. All
of you will remain in my heart forever. I continued to heal both physically and
mentally. I married one wonderful husband. Now I am doing very well
and am very happy. Many of you must
think I went thru a terrible time.well yes. BUT I have to say I WOULD DO IT
AGAIN IN A HEARTBEAT!!!!!!! I
wouldn't even hesitate. The
experience although tough was mind expanding. I learned so much about life , myself and my friends.
I
am strong. I am a PBCer.
Special
thanks to Linie, Bobbie D, JoLynne, Marlene R, Janice D., Anne V., Nancy
(NDC10), and I am sure I am missiing some of you, but you all know who you are.
___________________________________________________________________
JOE AMSTERDAM
My
name is Joe Amsterdam.
I'm
56 and a mid-life career change student rabbi.
I
received my tx on January 6, 2005.
My story goes pretty much like this:
My
experience with PBC was a bit different from some. We were living in
southern
At
the time, I was serving a congregation in
In
the late fall of 2000, I passed out in mid-conversation with a congregant at an
oneg Shabbat, no less! (This is a post Friday night Sabbath service social
gathering, for those who might not know).
I was hospitalized with hepatomegaly (agonizing), but nothing else. It was in 2001 that the cirrhosis became
noticeably worse and I had a series of 10 bleeds from esophageal varices, about
once a month, each of which thankfully occurred at home. Each bleed required 5 days
hospitalization (needed for the octriotide to be effective), and approximately.
2 units of blood per hospital visit.
The
outpatient endoscopies and variceal banding went on for the better part of the
year, until my gastroenterologist advised me that the only thing that was going
to save my life in the absence of tx was the insertion
of a TIPS (transjugular intrahepatic portosystemic shunt). The TIPS would take
the pressure off the portal vein and eliminate the possibility of variceal
bleeds, but it would also hasten the onset of hepatic encephalopathy, a
devastating prospect to someone whose career required intellect, vocabulary,
and language skills (Hebrew and English).
After a couple of revisions to corrected clogging of the stent,
the TIPS worked well for over a year, but all the lactulose in the world
was not averting the encroaching dementia. In 2003, I left my position and
became officially disabled. Ascites came at the very end. Fatigue and weakness were there all
along, but got worse.
I'm
not sure when I actually was placed on the list at Mt. Sinai Medical Center
(MSMC) in NYC, but I remember a MELD score of probably 6 or 8, and feeling
worse than the score would reflect.
My score was only 16 three weeks before tx,
but must have gotten significantly higher by tx time because I was
apparently the highest ranking matching recipient. Based on post op
evaluations, I would have been dead before I ever reached the MELD threshold of
25. This, by the way, is an
extremely important issue for PBCers, since our presenting symptoms are
frequently at odds with MELD scoring.
All
I can tell you about my cadaveric donor is that this human being, of
blessed memory, was 77 yrs old, but in perfect health. He died of a sudden stroke, but his
liver had been "well maintained." Talk about serendipity - his liver was
turned down (because of age) by another donor center before it was offered to
So
that's my experience. I can look
forward to celebrating my re-birthday on January 6, 2006, but the best
part was celebrating my 56th birthday on May 19, 2005. In December, I had no reason to expect
that I would live this long.
I
have special feelings about everyone involved in the liver tx program at MSMC -- they are all wonderful, caring,
compassionate physicians, nurses, and ancillary staff. All wonderful human beings. And especially for my donor and his
family. They have blessed me with
renewed life.
I'm
glad I've decided to connect with the PBCers. My wife, Esther had signed up a
couple of years ago, but it's new for me.
It seems as though there is so much work to do, from dealing
with support and quality of life issues for PBCers, to getting people to
understand the urgency of designating themselves as post-mortem donors. Two months ago, at a colleague's
seminar on end-of-life issues, he stated his position that one should indicate
in his or her Advance Medical Directives the desire to be considered as an
organ donor. He gave me about 5
minutes to speak, although I was not on the agenda. Afterwards, a woman approached us and
told me that my story had convinced her to sign her drivers
license, and would my wife and I witness her signature. We were thrilled - it
was a small but important achievement.
I
have since listed myself as a volunteer with the NY Organ Donor Network and am
also looking forward to working with the American Liver Foundation in the near
futur
To
all of us, continued good health and blessing,
Joseph, Rachel, Rebecca &
Esther
JUDY BURCH
Judy
Burch transplanted Dec 30, 2000, University of Alabama Hospital,,
I
was diagnosed with Primary Biliary Cirrhosis in 1986. I knew no one who had
ever heard of this slow progressive disease. My first symptom was fatigue, which
became all consuming by 2000. Thru the years I began to give up many of the
things I loved to do. A lot of
other autoimmune diseases popped up: Sjogren's Syndrome,
rheumatoid arthritis, severe thinning of my corneas, itching that was
relentless, skin problems, and then pneumonia. Slowly, as the liver shuts down,
the poisons in you body take over everything including your mind. I could no
longer reason, do math, remember phone numbers, names, events, etc. I covered
it up pretty well I thought but later I learned that I had not done as good a
job as I thought. Days, weeks, months became a blur. I would get up and sit for
hours in a daze. It was like I
lived in a fog. I began to lose
muscle tone and all my strength.
Families should be made aware of the mental changes, lack of decision
makin g skills and the malaise that comes with advanced liver disease.
In
January of 2000, my gastroenterologist did another liver biopsy and saw that
the disease was causing more damage to my bile ducts. I was suppose to be moved
up on the list in March but thrrough a paperwork error, I was not. I got a call
on July 9th but had to tell my surgeon to pass because I had pneumonia. It was not
until the Sunday after Thanksgiving that we were called again. We waited at the
hospital for 14 hours and they had to tell us the liver was no good. Two weeks
later, a two-hour wait, and the liver had hepatitis C, so it naturally went to
someone else. Christmas came and went, and on December 29th I was put on call
and taken off 3 times in one day. That night the phone rang and said for us to
come in. We went and they took me to surgery at 4:45 AM. I woke up six hours
later in ICU, on a ventilator, but was off it in six hours. I was in my room
the next day, and eating solid food the day after that. I came home 6 days
after surgery. I have not had any major problems, and can doing anything I
want. I learned that recovering from a transplant is nothing to compare with
living with pbc.
I
went to the Transplant Games in
Three
months after my transplant I wrote my donor's family for the first time. In 2003 I received the call that a
letter was in the mail from her daughter.
Mary wrote the most wonderful letter about her Mom/ Allison and
I were the same age, 2 children and 2 grandchildren, both married 35
years. She taught kindergarden and
was loved by her students. I met
Allison's younger daughter Molly and her beautiful daughter, Lela on
Thanksgiving. These girls have been
so wonderful. I cherish the
pictures they sent me. Their family
is never more than a thought away and in my prayers daily.
None
of us would be here without the generosity of people who under the most
difficult circumstances think of other.
No one should die because they didn't
get a chance at this marvelous gift.
KIM C.
DX
1991. Active on waiting list at
Rush Presb. In Chgo. Had a call
August 1998 a liver available. Went
in at 2a.m. and by 4 a.m. they decided to take a pass on the organ, tainted
with Heb B core.
Waited
6 more years, barley hanging on, July 8 2004, now registered at Northwestern in
Jan
2005 developed CMV. Had much damage
to esophagus, many dilations and currently, AMA was positive, 80+ and back on
Actigall, starting the cycle again. Weekly injections of Procrit and
Neupogen. What a wild ride it has
been! Would I do this again, a
definite no.
Total
time off work, 7 weeks.
_____________________________________________________
Lucy Whitt
9/9/05
I was diagnosed in September of 1999. I needed to have my
gallbladder removed and the Surgeon found something strange with my liver. He
took a piece for biopsy. PBC in stage 4, I was told. Liver transplant or I would die. I was
very scared confused and no one in the family took it as serious as it was I did my
research on the disease. I was 60 years old at the time and had 60 good years
of life. My children are grown. I’m alone - I didn’t want to do
this. I didn’t really want to die but I’m just hanging out here. I
really didn’t know what to do with being who I am I needed to wait to see
what God wanted me to do
so I totally gave it to Him. I was doing well after getting on Actigall and other med’s - I did a liver detox with my chiropractor - so for four years I was doing
good then all of a sudden I got
very sick. I called my friend on a Sunday morning in Dec. of 2002 - that I wasn’t going to church. I was too sick. Well
she stopped over, called my sister. I went to ER. The family took over after that - they took shifts. Always
someone here with me. They took me to appointments for test I needed - I
was very weak, in and out of consciousness - in and out of the hospital.
This started in Dec. 2002. On April 10, 2003 I had my TX. It was 6 months
before I came home. My son was here with me when they called and said they had
a liver for me to come ASAP. I only remember my son asking me on the way to the
hospital what I was thinking. I said I’m trying not to think. It’s all in God’s hands now.
It was a long, tough, wild, crazy trip. The family tell
me they were called 5 times that I wasn’t going to make it. When I came
home, I felt as thought I had been on another planet. It took me about 5 months
to get strength back and started feeling great. I had a set back last January
(2005). Back on my feet again, doing great. Had my
grandson’s visit with me for a week this summer. We had a great
time. I have side effects from the med’s, get tired easily, but I have a
life now where I appreciate all the
things people and myself included take for granted. I’m happy for each
day I have to spend with my family. I don’t put it off until tomorrow. I
have more understanding of what is really important in life. I see all the
things that God has done for me and more than ever that He will always be there
for me in the future. It took me 64 years to get to this peace that I have with
God. I’m glad that it is over with, wouldn’t want to do it again.
I’m glad it happen and that I still have some
time to be with my family. It was worth it. It‚s hard
to believe sometimes that I went through this, like it was a nightmare.
I’m proud of myself for being able to have gotten through it (only with
the help of God). I now feel that there is nothing I couldn’t get
through? Well maybe? It’s 2 years and 5 months and all is wonderful. One
day at a time. I don‚t live like I’m dying (Tim McGraw) and (Toby Keith) I’m not as good as I use to be,
but still good -------
_____________________________________________________
MABEL
Mabel
Fisher/Iowa/age 59/Diag 92/TX 04
I
was living in
I
had progressed to a MELD score (which they didn't even have when I went on the
list) of 16 by February of 2004 at which time I had switched transplant centers
due to insurance changes. At
that point things seemed to progress at a rapid pace which was unlike the
previous 12 years of my disease and in May I had many complications which
landed me in the ER and then ICU at Cedars Sinai
in
Thank
you for letting me tell my story. If I could sum it up I would say, each of us is so different even though we have so much in
common. And predictions are guesses .. very educated guesses, but just guesses and we shouldn't
allow ourselves to let them discourage us or cause us to give up. Enjoy EVERY day and be kind to those
around you. You never know how a
person feels (they may be a person like me who says I feel GREAT even when I
don't) and you don't know what they might be going through silently so always
give your fellow man the benefit of the doubt. It will come back to you in many ways.
It
is wonderful that so many people will never face transplantation with the URSO
drugs and the earlier diagnoses and with the "soon to be discovered"
cure from Dr. Gershwin and his team, but if you do, remember, it is DOABLE and
life is GOOD post transplant.
Hugs
& Smiles,
Mabel
Fisher/Iowa/age 59/Diag 92/TX 04
MARY WILLIAMSON
I
was diagnosed with PBC in 1992.
I went to the doctor because of the non-stop itching, mainly on my
arms. He sent me to a specialist,
who did a biopsy and put me on Actigall.
Everything went pretty well until early 2000 and then it started getting
worse. In July, 2000, my doctor
told me I needed a transplant, which was too bad because
My
husband did some checking and found out about the Mayo Clinic in
I
went in to see my local doctor in Albuquerque who was working with Mayo on my
labs and treatment the middle of October.
He was alarmed by the results and immediately called Mayo while he was
having them faxed over to them. As
expected, my kidneys were shutting down and I needed to be in the
hospital. We drove to
I
was checked in and I don't really remember a whole lot after that. I was put on dialysis, taking more
enulose (sp?) than I ever want to again, along with whatever else they
were doing.
I
received my liver on November 5th. at around 3 or 4:00
in the afternoon. The doctors were
thrilled at how fast it began working and were very happy with the
results. The first thing I remember
when I woke up was that I didn't itch anymore.
I
had a heart attack 2 days later, because everything started backing up. They were ready for it and got all the
fluid drained from my lungs and everything settled down after that. I had an episode of rejection about
a week after the transplant. My
blood type was A+ and my donor was O.
The problem was that not only was my body rejecting the liver, the liver
was rejecting my body. The
doctors at Mayo contacted their partners in
Other
than that, everything went as smooth as you could expect. It was a long miserable experience,
including what they called a "prednisone psychosis" (sp?) episode
caused by the large doses of the steroids. That was fun. I was sure that the nurses were trying
to kill me so they could take the rest of my organs and sell them. (The movie "Coma" kept running
through my totally confused brain.) Of course, I was way out
there - and recovered back to the land of the "normal".
I
was back in
I
am very happy now. I have 2
grown children, both in college, a wonderful husband who was a great
care-giver, and work full time. I
throw down my pills each day and thank everyone who was involved in saving my
life.
____________________________________________________________
MELISSA
My
name is Melissa Andreoli, and I had a liver transplant on December 12, 2003. I
was 53 years old. In 1994, I had a pancreatitis attack and was rushed to
the emergency room. Several months later I had another attack and
after many tests, I needed my gallbladder removed. A
few months later, I continued to have pain, and my doctor sent me to The
Indiana University Medical Center in
The
ERCP was unable to remove the blockage in the liver. So the radiologist then
had to try and remove the blockages by inserting 2 wires from the outside into
the liver at the blocked bile duct.The first attempt in May was unsuccessful so
2 draining tubes were inserted. After a couple of weeks another attempt was
made and this time only one blockage was able to be removed. By this time
I had dropped approx. 50 lbs and after several more weeks, a last attempt was
made on the reamaining blockage. The last attempt was a success but I still had
the drain tubes in case another blockage occurred. Stents were placed in the
blockage area but one of them was of a harder material and was so painful just
to move my body. This area in which the tubes were placed needed cleaned,
bandaged and syringed with saline solution twice a day. After I started to
get some strength back I sought a second opinion at the
My
only option in
It’s
been 1 year, 9 months and I am feeling GOOD!
