Transplant suitability

[Michael__0__0]

  My son, now nearly seventeen, became seriously ill about two
  and a half years ago.  He was admitted to a paediatric hospital
   and after about six weeks and inumerable tests received a
  diagnosis.  We have been told that he must have contracted a
   'mild' form of hepatitus (hepatitis) which his immune system successfully
  fought off.
  The problem is that his immune system then did not shut down
  and began to destroy his liver.  He has been treated continuously
  with two drugs since then and had regular biopsies and blood tests.
  After more than two years and all the associated side effects of
  depression, suppressed puberty and growth inhibition, the
  specialist has said that his condition has continued to
  deteriorate and he must have a liver transplant.  The problem
  is that the immune system is still not under control and he
  must wait until it is.  His medication was increased
  substantially about three months ago and his blood tests
  show a lessened level of immune sytem activity.  
  Is it possible that the drugs can be withdrawn without the
  immune system becoming over-active again?  I am concerned that
  each time an attempt has been made to reduce dosages, there
  has been only a temporary improvement then a reversion that
  has resulted in further incremental damage to the point that
  he is left with about 15% function.
  My son is losing heart and the enjoyment of his teenage years and
  the medication is causing bouts of severe depression.
  Is it possible that a transplant could be successful without
  the immune system being totally under control?
  Any advice or information would be greatly appreciated.  
  Thank you

[HFHSM.D.-D.M.]

Dear Michael:
I am extremely touched by your son’s situation and the toll it has taken on him and on you and your family.  I can appreciate the frustration you feel and I suspect the frustration is fueled by your uncertainty as to what will happen next.  
I’ll try to address some of your concerns though you will have to understand that I am somewhat limited by the fact that I don’t really know you son’s diagnosis or that much hard information about him.  It sounds like he is an immune-mediated hepatitis and he may have something we call autoimmune hepatitis.
In autoimmune hepatitis (I emphasize that I do not know your son has this), we suspect the body’s own immune system sees the liver as foreign and attacks it.  We then use medications that suppress the immune system to suppress the attack and damage to the immune system.  Many, if not most, individuals with autoimmune hepatitis are able to taper their immunosuppressive medication to a level where the side effects from the medication are not substantial.  Some patients, however, are not.  It sounds like your son has had difficulty tapering his medication without having a relapse or worsening of his condition.  Some patients are not able to ever get their autoimmune hepatitis under control even with high levels of immunosuppressive medication, and often these patients need liver transplants sooner rather than later.  
You ask, “ Is it possible that a transplant could be successful without the immune system being totally under control?”  The answer is that it is possible.  Autoimmune hepatitis is considered a good indication for liver transplant.  While the autoimmune hepatitis can come back in the transplanted liver, patients with transplant often do well.  One reason for this is that we use special immunosuppressive medications after transplant and these medications are often especially effective in keeping the immune system down and they can often keep the transplanted liver working well.  
I hope this information is helpful to you. Again feel free to let us know of additional questions or information.  You can always contact us directly at Henry Ford at [phone].  If you are in the Detroit area, we would always welcome to come see us.  We have a very active group of liver specialists and see many patients with autoimmune hepatitis.  We also have a very active liver transplant program.  
This response is being provided for general informational purposes only and should not be considered medical advice or consultation.  Always check with your personal physician when you have a question pertaining to your health.