Waiting for a liver transplant-with chronic liver diease.

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VickyLou:)
New Member


Date Joined Feb 2005
Total Posts : 7
   Posted 2/20/2005 5:50 AM (GMT -7)   
We have been coping for six months supporting my dad who is on the liver transplant list. It is a very difficult because it has changed him completelely. Any ideas? x

ldonna
New Member


Date Joined Apr 2005
Total Posts : 1
   Posted 4/16/2005 8:53 PM (GMT -7)   
 
 
      Vicky
     
       I have noticed that it has been a while since a post.  I hope your father is doing okay.
       my reason for contacting you is I do know how you feel.  I have been going through much the same for the last three months.  Someone very close to me has been in the hospital since Jan 31 and still haveing serious liver problems and may not quailfy for a transplant anymore.  We have been dealing with the liver problems for five years now.  To be honest there isn't anything anyone can say to make things any better and the only comfort I have found is in prayer.
        I don't know anything about your situation but look up St Lukes Hospital in Jacksonville FL. on your computer.   They are one of the top Liver transplant hospitals in the country.  We spent two months there and seen miracle after miracle.  Many of the people we met (like my loved one) all the other hospitals gave up on them but at St Lukes it was unbelieveable.
        I wish I could be of some comfrot I hope this info helps.  Good luck and God Bless you and  your family
 
 
                                             Ldonna

VickyLou:)
New Member


Date Joined Feb 2005
Total Posts : 7
   Posted 5/17/2005 5:15 AM (GMT -7)   
Hi all.... just to tell you that my dad luckly had his transplant a week ago thursday... he was doing really well until he was not getting enough oxygen to his brain which was making him very confused... he is now back in intensive care. Although his new liver is working really well...so hopefully he is on the mend. All those out there waiting just remember your time will come it just takes time.
I would like to say a very special to the donor of the organ we cant thank u enough and the donors family..
Right im off to go see my dad ill update u on any news.
take care all xxxx

Christina_R
New Member


Date Joined May 2005
Total Posts : 15
   Posted 6/2/2005 3:44 PM (GMT -7)   
Thanks for posting and keeping us informed on your dad...I'm very glad to hear his liver is working fine.  It give us hope too.  I wish he has a speedy recovery.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/20/2005 3:00 PM (GMT -7)   

My fiance was transplanted the same month as you, isn't that amazing?

We live in Arizona and he had surgery at [hospital name removed]; fantastic hospital.  The surgery went really well and the first few months of after-care were great, but as time goes by things get looser and looser. They used to call us within hours of having blood tests done, now - he had labs drawn on Monday, today's Wednesday, we haven't heard a word.

(I've often wondered if, once a patient passes the 1 year mark, they're considered a success and the clinics turn their focus and energy on the more recent transplantees.) Our transplant center has a lot of patients.  I think, in many ways, after-care becomes a prioritization / staffing issue.  If they had more staff they could continue to give everyone immediate attention.

We did start asking his primary care physician to do some of the follow-up and coordinate with the transplant clinic.  For a while, that got everybody jumping. I think we stepped on some sensitive toes.

I wish you luck!



DJ

Post Edited (DesertJules) : 7/22/2005 5:45:58 PM (GMT-6)


AmandaD
New Member


Date Joined Jul 2005
Total Posts : 2
   Posted 7/22/2005 1:40 PM (GMT -7)   
GOLU--

I was also transplanted the same month as you. June 26, 2004 to be exact.

I am 23 years old and had my transplant at Vanderbilt University in Nashville, TN. I have received excellent care here, and they usually call me back the same day with my blood work results.

I also have a blog where I talk about my experience: www.williamsad.blogspot.com

Feel free to stop by and visit any time!

jjessie
Regular Member


Date Joined Aug 2005
Total Posts : 148
   Posted 8/17/2005 4:37 PM (GMT -7)   
GOLU:

Hi, I'm crashing from the Ulcerative Colitis forum. Check out http://www.usnews.com/usnews/health/best-hospitals/tophosp.htm

Top hospitals in the nation by specialty - check it out. Not sure where liver specialists rank if they are part of Gastro? or not. Good article anyway.

As for the orig post author on what to do on waiting while on transplant list...that must be very hard. I will pray for your family. Just try to love one another and don't give up!

God bless!
Jessie

Diagnosed Sept 1992
last remission lasted: 2 yrs, 3 months (2nd longest yet)
last flare: June 2005, under control August 1st and weaning off of
Prednisone (30 mg - 5 p/wk taper)
Pentasa (4g)
Flintstones vitamins
Nothing eases stress like: yard work and walking my Golden Retriever whose only experience with stress is watching the squirrels on the birdfeeder that he can't get to.


loremikshe
New Member


Date Joined Apr 2007
Total Posts : 1
   Posted 4/5/2007 8:04 AM (GMT -7)   
Hello All,
My husband is going on 2 years of awaiting a liver transplant. We are registered with UCLA in CA. We are hoping soon for a donor to become available. His meld score is 18 and climbing quickly now. They told us since his meld is 18 and he is a blood type B that he will hopefully be transplanted by June 07 not only because of his blood type but because they are transplanting in the high teens and low 20's doe anyone know this to be a fact or have any prior experience? I would appreciate anyone's input, any family watching a loved one suffering absolutely knows what we are going through. I do have a question for any prior patient going through all the symptoms, my husband gets this Pins & Needles spasam from his head to his toes, he says it is from the inside out and then he seems to be in a panic, is or has anyone out there suffered these symptoms and if so was there anything we can ask the doctor for or any supplement? I would really appreciate it, as he looses an entire night sleep over this and I can tell it weighs on his nerves. Thank you all for any input I can receive. We are very faithful and see miracles everyday, however the wait is unbearable to watch my love of 25 years suffering this way until a liver becomes available. Please add us to any prayer lists available.
 
Laurie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/5/2007 4:11 PM (GMT -7)   
LDonna, I live in Jacksonville and am going to St. Luke's on April 30th for excision of the right lobe of my liver (liver cancer.) The surgery will be done by a Mayo/St. Luke's physician. I get liver and orthopedic care at Mayo, and St. Luke's is the hospital they are using until their own hospital is completed next year. That will be wonderful to have everything on one campus. Mayo is absolutely tops, and has a short wait time for transplants.

Connie

Lsbfrnds2
New Member


Date Joined Apr 2007
Total Posts : 2
   Posted 4/5/2007 5:10 PM (GMT -7)   
Hi Everyone,
My name is Margie. Less then a year ago I was notified by the GI doctor that I might need a Liver Transplant. This was a total shock to me. At this time their finishing the testing and procedures for the Liver transplant list. My MELD score is only 16 but I'm starting to have more pain and ascites. I will be going though the Vetran Hospital in Cleveland, OH. I've asked questions on when, where and why but have not been told much. Its like they don't have the time and besides I have to wait 2 or 3 months to see the doctors. I don't have much support because my family lives in NJ. I have a few friends but they don't want to deal with my illness and symptoms. Can some help me understand. It boils down to "I'm scared.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/5/2007 9:10 PM (GMT -7)   
Margie, welcome to the forum. Are you restricted to the VA Hospital due to insurance and/or lack of funds? If not, I suggest you check out the Cleveland Clinic. They are one of the top 3 hospitals in the nation and have been doing transplants since 1984.

Keep posting!

Connie

Lsbfrnds2
New Member


Date Joined Apr 2007
Total Posts : 2
   Posted 7/12/2007 9:08 PM (GMT -7)   
Just a quick post to Margie's Hep struggle.  She pasted away on the 7/7/7 without getting a transplant.  I'm her partner and thought she would want you all to know.  She was sent to the VA hospital in Pitts. to be tested for a new liver.  Never got through the testing.  I'm a bit lost right now.  She was loved, very much. 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/13/2007 12:08 AM (GMT -7)   
Margie's partner, I am sooo sorry that she didn't get her transplant. What a shame! I am sure you are missing her very much. Thank you for letting us know. She is no longer suffering, so I hope that thought will be a comfort to you.

Hugs,
Connie
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