For my Brother

[Ruthie334]

Hello,
My Brother, who is 38years, was recently diognost with Serosis of the Liver and now with IHSS or Commonly known as HOCM.
My question is there something they can still do for him? AT this time they have not decided if they will put him on a transplant list because he is very sick. He now has Jaundice and alot of swelling and they are draining fluided from his lungs.The DR's are not being optimistic.

Just want to hear the truth...

Thank you


This discussion is related to IHSS.

[kenkeith]

My very old cousin had a liver transplant.  Prior to the transplannt he was very active.  He and his wife (sitting behind) on motorcycle left Arizona and took off for Alaska.  Half way she took a plan back to Arizona, he continued :).  He also liked to ski the slopes of Colorado...all this at the age of 81 and never drank either and recently died.  I don't mean to imply there is an association with the success or not with an implant, but I point out there are individual characteristics, and we all have different weaknesses and strengths.

The Meld Score of 19 puts your brother on a short list for a transplant. But there has to be a donor that matches up well with your brother.

I had dilated cardiomyopathy (enlarged left ventricle and pumping impairment) 6 years ago and a heart attack.  Medication has given some of my health back, but I have a mitral valve disorder.  My heart is at the normal size and pumps normally as well.

I haven't had one sick day not even a cold in 6 years, but I am beginning to feel some fatigue and I have slowed down in activity.

[Ruthie334]

Thank you for the very thourough message.   Although I don't understand any of it.  :)  As faar as I know he's got a score of 19?  He was never a drinker therefore we're not sure of the cause.  He's in the hospital again and had a boost of white platelets.  And they drained 1.5 L of fluid from his lungs, and has to go back next week to remove some more.  What does a score of 19 actually mean for him?  The transplant centre has called several times to make an appointment with my brother so we're hoping that it's good news and they will put him on a list.  His liver specialist is extreemly negative and mentions that 30% of listees die just waiting for a transplant or die during surgery.  You can imagine how disturbing this news was.

Next week I have my echo cardiogram for the IHSS and I am so nervous because everybody on my father's side has it including my brother.  I also have twin daughters who are almost two and wonder at what point do they need to get checked?

Do you have IHSS?  And if so... what are they doing for you?  How do you feel?

Thank you very much for your time.

[kenkeith]

There are partial liver transplant and there is a MELD score to evaluate the patients...it is not subjective.  

The Model for End-Stage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.

Lab values used in the MELD calculation:

•Bilirubin, which measures how effectively the liver excretes bile;
•INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors;
•Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.

Within the MELD continuous disease severity scale, there are four levels. As the MELD score increases, and the patient moves up to a new level, a new waiting time clock starts. Waiting time is carried backwards but not forward. If a patient moves to a lower MELD score, the waiting time accumulated at the higher score remains. When a patient moves to a higher MELD score, the waiting time at the lower level is not carried to the new level. The clock at the new level starts at 0. (Example: Patient has a MELD score of 15 and has been at level 11-18 for 100 days. With new laboratory tests, the patient’s MELD score is 22. The patient moves to a new MELD level of 19-24. The patient’s waiting time at this new level starts at 0 days). Waiting time is only used as a tie-breaker when patients have the same MELD score.

[kay2486]

how did he get serosis? he may too ill to recieve a transplant im sorry to say, you have to pester the doctors to get answers becausehe needs a transplant to live, if it caused by alcohol related? they may not help because of that, if not then get on their case to make sure he gets help

[kenkeith]

For some insight, cirrhosis gets worse over time and can become potentially life threatening. Cirrhosis-related liver damage cannot be reversed, but further damage can be prevented. So in term of survival, one can live with the disease but to live the longest with it one must follow the proper methods to reduce further complications and scarring.

I have read and the link I have given provides some understanding of HOCM.  It is not hopeless and your brother is young which is a positive.  Sorry to hear of brother's condition and thanks for sharing.

http://www.medhelp.org/posts/Heart-Disease/IHSS/show/252080