My name is Ellen and my daughter, Jayne, now 18, was diagnosed with Hepatocellular Adenoma in February of 2007; she was just 16 years old.
To make a very, very long story somewhat shorter, she had a major resection of her liver and suffered many, many setbacks and over 30 hospitalizations. Doctors were trying to save her liver, but in May of 2008, she developed varices and portal hypertension and was listed on June 1, 2008.
She missed the second half of her junior year and all of her senior year of high school. She did manage to graduate, however. Most all of her friends went away to college, but she was not strong enough to go herself. Sadly, she spends a lot of time at home, some days, alone.
The biggest problem is that she had chronic pain in the area of her liver and spleen. Narcotic pain medication helps with the pain, but our concern over dependence and addiction keep her from taking it when she is in pain. When the pain becomes overwhelming, she does take the pain medication.
Does anyone out there have a similar situation. Thus far, we have not been put in touch with anyone other than the parent of a baby with liver disease....she did not understand the challenges of having a teenager with liver disease.
I welcome any and all comments and suggestions.
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Need Supprot For My 18 Year Old Daughter
- By EllenZ
- Posted May 15, 2009 at 5:37 pm · 6 replies
- In Liver transplants
- Shared with the public
Explore topics in this discussion:
Hypertension Pain Chronic pain Portal hypertension Hepatocellular adenoma
6 replies
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- By EllenZ
- Posted June 1, 2009 at 11:01 am
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Thank you for your reply. My daughter was just discharged from her 35th hospitalization. The third day of her stay, she had a major GI bleed and vomited over a liter of blood. She was scoped and doctors banded 10 varices. During the procedure, she lost another liter of blood and required six transfusions in total. We are hoping that this moves her place on the transplant list.
- By keepnfaith
- Posted May 28, 2009 at 11:00 pm
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Hi Ellen,
I just wanted to drop a little note to say to you and your daughter to keep faith and hope! I am 47, when I was 39 I found out I had liver disease with hepatcellular carcinoma. I had chemoembolization and radiofrequency ablation. Praise God it kept the tumor from growing or spreading. Unfortunately I still had end stage liver disease, in may of 2001 I was put on the transplant list. January 11th 2002 I went for an appointment and was told I had to stay in the hospital over the weekend to try to get a liver, my doctors said my lab work has gotten really bad. the weekend turned into 4 1/2 weeks. I was to the point I could not get out of bed, my blood pressure was almost non existent, i was on a Dopamine drip to keep my blood pressure up. My kidneys were shuting down, I had developed ascites and gained 37 pounds of water weight. I had to have the nurse bath me I was so weak the last week. I was told that afternoon I had a liver waiting for me. I recieved my new liver and felt better almost immediately. I was told by one of my surgeons that he was supprised my liver was still functioning and said at best I would have lived maybe another 2 weeks. My point in writing this is so you and your daughter will continue to pray and keep hope even if it looks as though there is none! tell your daughter to fight through it, keep as active as she can without putting herself at risk, I know varices are dangerous. But please keep hope, faith, stay active and pray, pray to the Lord every day!
God bless,
keepnfaith
- By EllenZ
- Posted May 19, 2009 at 3:54 pm
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Hi Maggie,
Thank you for your note. Do you or someone you love have liver disease? I'm looking for ways to cope with all of this and for coping for my daughter. We've been at this for almost 2-1/2 years and it seems never ending. Any information would be appreciated!
Ellen
- By mems
- Posted May 19, 2009 at 10:16 am
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Hi Ellen,
I don't think there is anything worse than watching our children suffer. You and your daughter will be in my prayers. I hope you keep coming back to this site for support and encouragement and knowledge. I know it has meant a lot to me and I hope it will for you.
God bless you both.
Maggie
- By PEGGYB
- Posted May 18, 2009 at 1:33 pm
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Ellen my heart and prayers go out to you and your daughter.there is nothing worse than that helpless feeling. I never heard of this but will begin an extensive search. God bless Peggy
- By dgbeam
- Posted May 17, 2009 at 11:29 pm
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Ellen, I am so sorry that your daughter is having so much to deal with at such a young age. I can't imagine having to handle the pressure you are dealing with.
I'll try sending you a PM if it doesn't work let me know
Gail
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