LOST FOR ANSWERS !! Ammonia Levels 280

[countrygirlcansurvive]

My Son is incarcerated and I have to fight with the medical administrations to get him the treatments that he deserves.He has ESLD and HE.What I want to know is what can they do about his ammonia level other than Lactulose and Xifaxin.Thanks in Advance..Hello everyone its been awhile since I have been back here,I am doing fine still at SVR and still having check-ups every 6 mos.

Country

[pugdaddy]

Countrygirl, you're getting very good (and accurate) advice from Nan here.  You indicate that your son recently started taking Xifaxin.  It's quite expensive, so it's good to know that he has access to it while incarcerated.  It seems to be more effective than lactulose against the H.E. caused by high ammonia levels....so hopefully it will result in a noticeable improvement of his condition!  Please keep us advised -

[nan535]

"Was just curious what is the best scores for TP,he is not on a list yet,bc he is incarcerated."

When a listed patient receives a transplant depends on where he/she is listed.
Major cities like NYC and SF have long waiting lists and fewer donors so most patients need a  MELD score in the mid 30's to get a transplant.  There are LT programs however that can transplant their patients with a MELD score in the mid 20's.  

Where will your son live once he is released from prison? That information will help to check the lT programs that will be available to him (unless he is able to relocate).

Nan

[countrygirlcansurvive]

My son is feeling better he says..I would like to know about the MELD scores for TP.His is at 20 MELD score as of 3wks ago,he is having blood work to find out what his levels are now.The doctor reduced his Lactulose since he was put on the  Xifaxin now.He is also on lasix and pamelor. Was just curious what is the best scores for TP,he is not on a list yet,bc he is incarcerated.
thanks in advance

[nan535]

To have 10-12 bm's a day sounds like an awful lot and can cause dehydration which can cause HE also. As you are going through this yourself, I'm sure you know this.  What I don't understand is how he can have an ammonia level of 280 with so many bm's a day. The purpose of the bms is to eliminate the extra ammonia/toxins. Doesn't make sense.  

Your doctor is right about how he feels is more important than a number.
If he is able to speak to you coherently and understand what is being said to him and respond appropriately, then his HE is under control.

Does he have other symptoms of decompensation like ascites and esophageal varices. If so, those can be life threatening if not treated properly.
Varices need banding and ascites needs to be periodically drained or he may develop a serious infection.

Seems to me you may need to contact an outside agency for help - maybe even the state Governor's office.

Best to him and you.  Congratulations on your SVR.

Nan

[countrygirlcansurvive]

thanks for your reply..He is in Indiana and I am in Florida,so I don't get to visit him at all.He says he is having 10-12 bm's a day and I have told them at the facility that he needs TP.All they do is up his doses.He has not been seen by TP team or Hepatologist.I have wrote to the Super in charge or warden.I reported the whole medical staff for neglecting him proper doctors.I also have Cirrhosis and take the Lactulose but I am getting the proper tx.He is scheduled to be released in Dec.I don't get to see my doctor till Sept. but I will be asking him Q's.Just worried about the 280 level.I know 60 is the high in the normal range.My doctor the last time I seen him in March said that you can't worry about those numbers,that its how he feels is whats important.He says he feels ok.The facility dr said he is worried about swelling of the brain with that high levels.I ask them when he 1st went in if a prisoner can get a TP and they said yes.I am constantly trying to get on the phone with them and do their job and take care of myself..I just worry about my son like a mother would..

God Bless All
Country

[nan535]

I should add that the correct dosage for Xifaxin is 550 mg 2X a day (assumng his body is able to tolerate it without increasing the water retention.)

[nan535]

So sorry to hear about your son's medical condition. It must be such a helpless feeling to know he is so sick and be unable to be close to him.

Lactulose and Xifaxin are the correct course of treatment for HE. He should be having 2-3 bowel movements a day in order to remove the toxins from his body and brain. When my husband had ESLD he was only able to take the lactulose (30 ml 3X a day). The Xifaxin increased the edema in his legs and ankles, so he had to stop it.

Your son is a very sick man and needs a liver transplant. Has he been evaluated for transplant?  I am completely ignorant of the medical  rights of incarcerated individuals so I would advise you to consult an attorney to see what rights he has to receive proper medical treatment before its too late.

Sorry to be so blunt.  I wish you and your son the best going forward.

Nan