Aa
HE worries
My wife has been going through a pretty rough HE episode last few days,super sleepy,confused,no hunger. I can still get her to take her meds properly and drink fluids. nothing i cant handle as far as taking care of her right now just concerned how long this will last, she just started rifaximin yesterday and shes on lactolose 3x a day. She also has acitities just was drained last week seems to come back quickly. seems like everything thats supposed to help her makes something else worse. any tips on how to get her appetite back or will it come back once HE calms down? Hopefully after her first visit to gi doc on tues the liver specialist will follow quickly, thanks everyone.
This is an important step for both of you. You need the support also.
Learn as much as you can. It can be a very difficult time and great patience is needed. Remember that you can always come back here for support as well.
Best wishes
Nan
Learn as much as you can. It can be a very difficult time and great patience is needed. Remember that you can always come back here for support as well.
Best wishes
Nan
COMMUNITY LEADER
Great news!
One step, but a very BIG step towards helping your wife to overcome her current situation and in time recover her health.
I very am glad you will be getting the assistance you need and deserve. The road to liver transplant is a very bumpy one, lots of ups and downs, but if we take on each challenge and do our best, we can accomplish what at first may have seemed the impossible.
Remember asking for help is something we all must do to get through this.
Well done!
Hector
One step, but a very BIG step towards helping your wife to overcome her current situation and in time recover her health.
I very am glad you will be getting the assistance you need and deserve. The road to liver transplant is a very bumpy one, lots of ups and downs, but if we take on each challenge and do our best, we can accomplish what at first may have seemed the impossible.
Remember asking for help is something we all must do to get through this.
Well done!
Hector
I have been in contact with the case manager for my wife today, she is in charge of liver transplants for our health group. She also the nurse that deals with all the patients in need of transplants. She also gave me the 24/7 number, She is very expirienced and was a huge help. thanks for the advice guys.
COMMUNITY LEADER
I agree with Nan that the situation calls for the transplant center overseeing her care. NOW. When patients have ESLD their condition can change literally overnight.
There should be a 24x7 number you can call to get medical advice including whether she needs to go to the hospital to get care she can't receive at home. I don't know how I would have survived long enough to get my transplant without having someone I could call at anything day or night when I didn't know what to do. I still have a 24 x 7 number I can call and talk to a transplant nurse or doctor now that I an post-transplant. I have already used that number at least 4 times in the last 9 months when I had medical issues happen that I have never experienced before and didn't know what to do. I have gone to the emergency department twice this year.
Loss of appetite is very common in ESLD patients. There is no way for a caregiver to get an adult to eat when they have ESLD or any other condition. This is something that liver transplant center staff are very familiar with and know how to manage. There are procedures and treatments for managing malnutrition in people with ESLD that only a liver transplant center can help you with. Your GI can't and obviously isn't. Neither can any other doctor who does work in liver transplantation. This disease needs very specialized medical care. Which is why your GI needs to refer you to a transplant center immediately so your wife can be under the care of doctors that known how to manage her illness and prevent further deterioration of her condition.
Malnutrition leads to deterioration of the ESLD patient which produces more complications and severity of complication and poorer outcomes. Her doctor needs do his job and admit your wife's situation is beyond his experience and expertise and take action before the situation gets even worse.
"super sleepy, confused" shows that her HE is NOT being managed properly. Taking Lactulose 3 times a day is not the answer to HE. It is not how much Lactulose a person takes it is how often they are clearing the bowel which is creating the toxins causing the HE. She must have 2-4 bowel movements a day and no diarrhea in order for her HE to get better.
Write down all of your questions before going to the GI and make sure you tell him you need to be connected with liver transplant ASAP as issues have arisen that you are inexperienced in handling. Make sure the doctor responds to your request to be put in contact with the transplant center.
One of the many services provided by the transplant center is to follow the care of patients whether they are listed or potentially list at a later time. Some of us had no caregiver when we were on the waiting list. It is very dangerous to not have medical advice as many of the complications of ESLD can be life-threatening if not managed properly.
Nan and I are only civilians we can't direct you regarding how your wife's care. We don't know her exact health status and we can only speak from our experience with these issues over the years. Nan with her husband and me with my own 5 years waiting for a transplant. Only a member of a liver transplant team with her medical records can address all of the medical issues you wife is suffering.
Be diplomatic about it, but don't take no for answer. Your wife's health and possibly her life may depend on it.
We have a saying in the transplant community..."No one does this alone." Not us patients, not our caregivers, none of us can do this without a lot of help from many people. When it comes to medical issues we need to rely on the transplant team to care for us. At one point or another our very lives are in their hands. Before transplant, during the transplant surgery and for the rest of our lives after transplant. Without them myself and many of my friends won't be alive today. Their job is to keep us alive, being as healthy as possible, for as long as possible.
Best of luck!
Hector
There should be a 24x7 number you can call to get medical advice including whether she needs to go to the hospital to get care she can't receive at home. I don't know how I would have survived long enough to get my transplant without having someone I could call at anything day or night when I didn't know what to do. I still have a 24 x 7 number I can call and talk to a transplant nurse or doctor now that I an post-transplant. I have already used that number at least 4 times in the last 9 months when I had medical issues happen that I have never experienced before and didn't know what to do. I have gone to the emergency department twice this year.
Loss of appetite is very common in ESLD patients. There is no way for a caregiver to get an adult to eat when they have ESLD or any other condition. This is something that liver transplant center staff are very familiar with and know how to manage. There are procedures and treatments for managing malnutrition in people with ESLD that only a liver transplant center can help you with. Your GI can't and obviously isn't. Neither can any other doctor who does work in liver transplantation. This disease needs very specialized medical care. Which is why your GI needs to refer you to a transplant center immediately so your wife can be under the care of doctors that known how to manage her illness and prevent further deterioration of her condition.
Malnutrition leads to deterioration of the ESLD patient which produces more complications and severity of complication and poorer outcomes. Her doctor needs do his job and admit your wife's situation is beyond his experience and expertise and take action before the situation gets even worse.
"super sleepy, confused" shows that her HE is NOT being managed properly. Taking Lactulose 3 times a day is not the answer to HE. It is not how much Lactulose a person takes it is how often they are clearing the bowel which is creating the toxins causing the HE. She must have 2-4 bowel movements a day and no diarrhea in order for her HE to get better.
Write down all of your questions before going to the GI and make sure you tell him you need to be connected with liver transplant ASAP as issues have arisen that you are inexperienced in handling. Make sure the doctor responds to your request to be put in contact with the transplant center.
One of the many services provided by the transplant center is to follow the care of patients whether they are listed or potentially list at a later time. Some of us had no caregiver when we were on the waiting list. It is very dangerous to not have medical advice as many of the complications of ESLD can be life-threatening if not managed properly.
Nan and I are only civilians we can't direct you regarding how your wife's care. We don't know her exact health status and we can only speak from our experience with these issues over the years. Nan with her husband and me with my own 5 years waiting for a transplant. Only a member of a liver transplant team with her medical records can address all of the medical issues you wife is suffering.
Be diplomatic about it, but don't take no for answer. Your wife's health and possibly her life may depend on it.
We have a saying in the transplant community..."No one does this alone." Not us patients, not our caregivers, none of us can do this without a lot of help from many people. When it comes to medical issues we need to rely on the transplant team to care for us. At one point or another our very lives are in their hands. Before transplant, during the transplant surgery and for the rest of our lives after transplant. Without them myself and many of my friends won't be alive today. Their job is to keep us alive, being as healthy as possible, for as long as possible.
Best of luck!
Hector
Who prescribed the Rifaximin? I assume it was her primary care doctor. As she has ESLD watch out for any reaction to the medication. When my husband started it (pretransplant when he had ESLD) his ankles and feet became very swollen and he had to stop it. That may not happen to your wife but it's important to know that someone with ESLD is very sensitive to medications as the liver is not able to metabolize the medicines properly and toxins which normally leave the body don't. The dosage of Rifaximin she is taking may need to be adjusted.
It is really important for her to see a hepatologist preferably at a transplant center as they are the best in the field in treating ESLD. Call the GI doctor and see if there is anything he/she can do to speed up the process of referral. Your wife is a very sick woman and needs appropriate care for her ESLD asap.
Nan
It is really important for her to see a hepatologist preferably at a transplant center as they are the best in the field in treating ESLD. Call the GI doctor and see if there is anything he/she can do to speed up the process of referral. Your wife is a very sick woman and needs appropriate care for her ESLD asap.
Nan
I can so relate to your post. It is so hard to deal with a spouse who is in the middle of an HE episode. The Rifaximin will help but it will take a few days. Is she taking 550 mg twice a day? That is the recommended dosage for treating HE. Is she having 2 to 3 bm's a day? Too much lactulose can cause diarrhea which can cause dehydration which can worsen the HE. The HE will also affect the appetite. It is really important to get it under control. I would definitely consult with her doctor if things are not improving. She may need to be admitted to the hospital for a few days. They will give her IV fluids and check for infection which can also cause HE.
So sorry you are both going through this.
Nan
So sorry you are both going through this.
Nan
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