where do i take daughter to get her into a transplant center?

[DesparateMom939]

we live in ne pennsylvania.  he "score", ha ha, is not quite high enough for a transplant, but her liver studies are going down hill and right now i don't even have a specialist.  her specialist was a phisician's assistant who dropped her because she cried at her last visit; so she was told to a psychiatrist for an evaluation, but she is fine now!  her pac had her on 2 antidepressants that were making her very nausious and just worsening her depression.  she has hepatic encephalopathy, hep c,  and is going through change of life.  she is gravely ill.  i would think my mood wouldn't be to pleasant at times also.
she is lactose intolerant and has severe gas pain from lactulose.  it's continuous and she doesn't want to live with this much pain....this along with recurrent fever, fluid, aches, a spinal problem, and severe pain in the groin area.
we need a doctor.  i am at a loss as to the best specialist to take her to.
is there anyone who can tell me where to start?
and she is on medicare with access plus.  will anyone even do a liver transplant with this type of insurance and no money?
please.

[mpace6983]

Are you familiar with the "living doner program"? You or someone who is a "match" for her can donate part of their liver. Both the donor and the recipent's liver will grow to a normal size in a few months. I dont know about the insurance covering the transplant. GOOD LUCK

[GSDgirl]

Don't know how far you are from Pittsburgh but the Hillman Center is supposed to be the best.  Good Luck!!

Denise

[orphanedhawk]

I don't know about Pennsylvania but here in California there are many hospitals with good liver clinics that accept patients on what's called Charity Care.
Charity care doesn't cover transplants but she can get one with whatever insurance she has.
I suggest you do a search on line for 'liver transplant centers Pennsylvania'.
Call places and get some concrete information.

There is help available.

Don't take your daughter off lactulose. It is controlling her encephalopathy which is caused by her liver disease. It causes an ammonia overload in the body.
I had this and landed up in the ER completely delirious.

I don't think lactulose has anything to do with lactose. It isn't made from milk. Lactulose is indigestible. It works as a laxative and for some strange reason it makes the ammonia fix onto the feces and out they go. It often causes diarrrhea.

Her emotional outbursts are understandable and you should be glad you are rid of that ignorant so called health care worker.

You need to be strong. Try your best to help your daughter stay as relaxed as possible. Give her warm baths, play calming music, whatever it takes.
And if she is up to it, take walk. Exercise is good for all of the body and mind.

I had a transplant in April and my calm husband was my rock. It's hard for the caregivers. So please take care of yourself as well.

Let us know how things work out.

Good luck, OH

[lalapple]

i'm so sorry to hear this.  cannot believe the so called "specialist" dropped her bc she cried.  i say switch, find a hepatologist (liver doctor) specifically in your location, look for one with a large clinic, experienced surgeons for transplantation:

www.hcvadvocate.org

http://www.healthpages.com/doctors/listByCity/Pennsylvania/Philadelphia/Hepatologist/

http://www.hahnemannhospital.com/en-US/ourServices/medicalServices/TransplantCenteratHahnemannUniversityHospital/Pages/liverteam.aspx