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My Brother has ESLD and is currently critical...

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Posted 11/16/2008 6:10 PM (GMT 0)
My brother was sent to the emergency room by his primary physician on September 25th, 2008 because he could not get a blood pressure reading on him when he went to his scheduled primary appointment. He spent a week in the hospital with swelling, jaundice, and other symptoms of liver disease. He was diagnosed with Alcoholic induced End Stage Liver Disease and was released five days later. He has not taken a drink since he left the hospital.

Family members have been taking turns caring for him at home. He also needs a total hip replacement (the reason for the visit to his primary in the first place), so he can't get around very well. He has severe muscle atrophy, very little appetite, and severe swelling in the belly and legs. He refuses to be tapped because he has a fear of needles. He has fallen five times in the last month. The last time he fell, I called EMS, but he refused to go to the hospital.

He was due to see a psychiatrist last week as a requirement to get on the transplant list. He was so weak that day that he could not walk. The psychiatrist asked us to bring him to his appointment to meet the transplant qualification requirement and he would admit him via the emergency room. He was admitted to the emergency room right after his appointment.

He was put in the ICU unit because he was not breathing well. He had been coughing a bit more than usual for two days before his appointment, and he had only been eating about 300 calories a day for two weeks prior. They put a mask on him to help force air into his lungs in hopes that they could avoid tubing him and placing him on a breathing machine. He made it about 12 hours on the mask, but was in a great deal of distress with his breathing and pain from his catheter.

The first night he was there, he went into further distress with his breathing, so they put a tube down his mouth and throat and put him on a breathing machine. He has been on that tube for five days now. They say he has Sepsis, but they have not determined the initial source of his infection. They suspect Pneumonia. He is sedated, but will open his eyes when someone prays for him or the doctor comes in and talks to him. He is breathing along with the machine, but breathing way too fast (31). His bottom number on his blood pressure is around 50, sometimes lower or higher. They started feeding him yesterday. So far, all of his other organs seem to be holding up.

The doctor's are not really saying what his prognosis is for making it through this spell. I would assume that it is not good, but they just won't say. They said that if the antibiotics were working, they would try to remove the breathing tube on day three. Day three came and went with no real change. They did try cutting back his air, but said he was not getting enough O2 on his own, so they turned it back up. He is in one of the top transplant hospitals in New Orleans, so they know what they are dealing with. The doctors seem frustrated that they have not been able to pinpoint the infection, saying that they are "treating him with broad antibiotics to cover all the bases".

I would like to know if any of you have been in a similar situation and would like opinions about his chance of coming through this. I am fine with whatever happens, because he is not the type that really wants to spend his life going to doctors. He had no advance directives or anything, so I guess his only daughter will have to make the decision to remove life support if he does not get better. I actually helped him fill out his advanced directives, but we had no one to witness them that night and never got it done.

Anyway, any thoughts on this? Does it sound like he will probably not come out of this, or has anyone been through something similar and survived it to continue the fight? Thanks so much for your thoughts. I'll keep you posted on his progress.
Posted 11/16/2008 7:09 PM (GMT 0)
JustLookin, I'm terribly sorry about your brother. As for his prognosis, it's totally up to him and his body. My father ended up in the ICU with esophogeal varicies and was given a 5% chance of survival, he walked out of the ICU 9 days later. So you never know. He also became septic in Feb of this year from a staph infection. His kidneys were failing, and again the family was called in, told he probably wouldn't come out of it. He left the hospital 2 weeks later. He is currently in hospice, but he has made it through the ICU incident, a transplant, and finally kidney failure. ESLD is one of those diseases that is very individual. What my father has been through would have taken out someone else easily, and what others have survived would have taken my father out. You just never know.

Good luck and keep us updated.
Posted 11/16/2008 7:55 PM (GMT 0)

JustLookin, I agree with ESLD in that liver disease is very individualistic.  I'm sorry your brother is so ill.  It really does not sound good.  What IS good is that he is in a top hospital for liver transplant, so the doctors there are very familiar with liver disease.  A good part of survival, I believe, depends on how much the patient wants to fight for survival--how motivated a patient is to comply with treatment to the letter.  And prayer always helps.

My prayers are with your brother and your family at this difficult time.  Please come back and let us know of his progress.

Posted 11/16/2008 8:43 PM (GMT 0)
Thank you so much ESLD_stinks and Connie, for your opinions. I just don't know what to think about his situation and how determined he is to fight it. His diagnosis is still very new, so he was still dealing with the impact of learning that he had been given a "terminal" diagnosis when he got so sick this time. He fears death, but he also did not seem very willing to follow Dr's orders. He was drinking more than a fifth a day of Vodka and quit drinking the day of his initial diagnosis, but the prospect of living with Dr's visits on a regular basis for the rest of his life did not sit too well with him, either.

We were trying to get his financial and legal affairs in order when he was admitted this time, so much of that is still up in the air, too. I just hope that his only (and very religious) daughter (age 21) does not have to make the decision to end life support. He is still able to open his eyes sometimes, and he can shake his head yes or no, so maybe we can get someone to ask about and document his wishes before he gets to the point where he can't communicate at all. We have the Living Will and Medical Directives filled out according to his wishes, but not yet signed and witnessed.

They sent a heart specialist in the day before yesterday to do an Echo. He said that the test did not show anything abnormal, but that it might be because of all the extra fluid blocking his view. Not sure why they called the heart specialist in. I try not to ask to many questions in front of my brother because I know he is afraid and that he can hear me even though he is sedated. They were worried about kidney function the first couple of days, but they say his kidneys look good now. They can't remove any fluids because his blood pressure is too low right now. He seems to be fighting to live, but I think he may have waited too long to go to the hospital for help this time. The doctors seem frustrated by the degree of the sepsis infection and the fact that his breathing rate is too rapid and his blood pressure is too low. They try to back off of the Vaso drugs from time to time, but his pressure rapidly drops in the 40's when they lower the drugs. I know that's not a good sign.

Even before this hospitalization, he was barely eating, jaundiced, and could only walk about twenty feet (with the aid of a walker). He has lost so much muscle that he is really just skin and bones with tons of fluid in the belly and feet. I felt like he was dying even before he went into ICU, but he refused to go to the hospital or to get the fluids drained. There really is not much you can do to help a person who does not seem to want to help himself, I suppose. I would not have insisted that he go to the hospital this time if I had known for sure that he was not willing to fight his way through this. I was hoping that after he had time to process the gravity of his situation, he might decided to fight. Turns out, he did not really have time to even get to the point of accepting his diagnosis.

Connie, I actually met a lady in ICU who had a liver transplant for Hep C 21 days ago. She is doing SO well! She had a complication that had to do with her O2 levels, but she is now breathing on her own and expected to leave the hospital very soon. Looking at her, you would never know that she was ever sick. What a miracle!

I have another question for you. I live about four and a half hours away. I had to come home for a couple of days, and I'm wondering if there would normally be a gradual decline in condition or if it would likely be a rapid decline. I know it varies from person to person, but I wondered if the fact that he is on various types of life sustaining support would allow me a few hours to get there if things started looking more dire. I realize that if he has cardiac failure or something like that, it could be really fast. I just don't know what to expect when it comes to his final hours and how fast they might come on.
Posted 11/16/2008 9:43 PM (GMT 0)

JustLooking, I think you should contact a social worker at the hospital regarding the living will situation.  Does anyone have Medical Surrogate or Power of Attorney at this time?  These are things that need to be done, as you said...while he is still able to communicate some.

It seems that the majority of end-stage patients slip into a coma before death.  As you said, with your brother on life support, he can be kept alive indefinitely if his heart holds out...or if given CPR, etc., if his heart does fail.  If there is no Medical Surrogate or POA, or a signed and witnessed Living Will, the docs will do everything in their power to keep him alive.  The legal issues really need to be discussed with his primary treating physician, a social worker, and family.  Also, if you are listed as a relative who can be given info over the phone, you will be able to contact the nursing station and find out his status.  I am currently doing this with my favorite aunt.

I'm sorry not to be able to give you a cut and dried answer, but there just aren't any.

Posted 11/16/2008 11:50 PM (GMT 0)
Justlookin, I just wanted to take the time to welcome you to the forum. I am so sorry that your brother is doing so badly. My uncle died from cirrhosis several years ago. He did not realize until it was too late that he was so sick. I think he lasted about a month and then passed away. My husband was diagnosed a little over two years ago. He has not had any major complications yet. The doctors say he remains stable. Miracles do happen every day. I have heard many people talk about their loved ones being at deaths door and then pulling through. I really feel so bad for his daughter. She is so young to have so much on her shoulders. I have a daughter that will be 21 in January. I can't imagine her having to deal with that. She still depends on us so much. Just knowing her dad is sick has been alot for her and my other children. I will be praying for all of you.

Connie, I am sorry to hear that your aunt is not well. I will be praying for her also.
Posted 11/17/2008 12:47 AM (GMT 0)
Thank you Connie and Butterflythree, for your replies. He and I filled out a Medical Power of Attorney and a Living Will, but we did not get them signed and witnessed before we had this emergency situation. I am glad that I know his wishes, anyway. It may make it easier for his daughter to make these tough decisions. I will call Social Services first thing in the morning. He is still able to nod yes or no even though he is heavily sedated. That should be enough for them to witness the information that we already wrote on the forms.

He had a cardiac "incident" about thirty minutes ago. It seems his blood pressure keeps dropping and then he gets an irregular heart beat. So far, the nurse has been able to adjust the medications to bring the blood pressure back up. Once we hear from the doctor that he is not likely to survive this massive infection or the breathing problem, we will decide as a family to let him go. I assume that they will allow his daughter to decide this without any further legal assistance, since she is his closest living relative? I think that as long as I am able to show her that we wrote down his wishes not to be kept alive artificially, she will be able to give the doctor's the order to let him go. Having the rest of the family there to help her decide should make her feel like we as a group are making the decision and hopefully it won't lay so heavily on her shoulders. It sounds like he is on a downward trend now that his daughter has made it to town to visit him. She said he opened his eyes a couple of times and looked at her. I think he might let go now that he has seen her.

Butterfly, I'm so sorry to hear that you are going through this for a second time. My brother only found out less than two months ago, and his primary doctor (the one that called an ambulance the first time), actually cancelled his follow-up visit because he did not think he would live to make it out of the hospital the first time. Boy, was that Dr. shocked when he walked in! My son is 18 and very wise for his age. He tells me that my brother is much luckier than some people because he has had the opportunity to say the things that he wanted to say to loved ones and family members. He reminded me that many people don't get that opportunity. That is a Blessing in itself. Our family has been at odds for several years, and his illness has brought us all back together again.

Thanks again for the prayers and well-wishes. We will all be fine, no matter what the outcome. I just want him to have some peace and to pass over without fear. I'll let you know how things progress.
Posted 11/18/2008 6:25 AM (GMT 0)
Hello Justlookin and welcome to HealingWell. So sorry that you and your family are going through this. It's actually breaks my heart to hear about how his young daughter will probably have to make the final call.
Oct 29 my sister-in-law passed away. My brother didn't not want to make that finally call and asked us all to help him make it. So as a family we all told the doctor that it was time. They were only taking his word for it but it
sure made made my brother feel better to think that that decision wasn't made by just him.

People's bodies react so differently to liver disease....it still amazes me all the different problems that patients experience with it.

Thoughts and prayers............
Posted 11/18/2008 7:00 AM (GMT 0)
Thank you Pink Grandma. I have been reading your posts on other threads, and you always have great advice. My brother is in his sixth day of ICU. He is still on the breathing machine. The doctors said this morning that he is not responding to the antibiotics as well as they would like and that they are seeing no improvement in the lung xrays.

The doctor this morning said that he is "critically ill", but won't say anything more about his chances of getting through this spell. He has been having "episodes" of blood pressure drops (into the 40's on his bottom number), which cause cardiac rhythm problems. So far, they have been able to regulate the episodes with various medications. He seemed somewhat better late this evening. The nurse said they are going to change up some of his medications to see if he can "hold his own" with the blood pressure and all. I guess we will see how that goes in the morning.

I hope that we as a family can decided together when he has had enough so his daughter won't feel so alone (or "responsible" for the decision). Thanks for that suggestion. I'll continue to post on his condition.
Posted 11/18/2008 6:53 PM (GMT 0)

"The doctor this morning said that he is "critically ill", but won't say anything more about his chances of getting through this spell."

JustLookin, I wanted to respond to your statement above.  The really good docs realize they are not God and that they really have no control over life and death, after they have done (and are doing) all that they can or that is in their knowledge base.

When I was diagnosed with terminal liver cancer, I really had to push a liver surgeon to give me "an educated guess" as to how much time I had left.  I could see that he was really uncomfortable with saying anything.  He finally did say that without treatment I would have about 6 mos.  Needless to say, I agreed to the treatment that was available and am still here, about 2 yrs. after he said that.  It really IS a miracle.


Posted 11/18/2008 10:37 PM (GMT 0)

I too am sorry to hear about your brother.

My husband has ESLD and at times is very ill.  He is jaundice and has excessive swelling in his stomach and has been vomiting and passing blood.  He either eats very little or binge eats and eats too much.  The problem with him is that he is still drinking, refuses to take the lactuose and see a doctor.  I begged him to go to the hospital this weekend but he refused.  Sometimes I think he just doesn't care.

I went to church on Sunday and prayed that he would get better or if that wasn't to be, that God just take him and not let him suffer.  He is a wonderful husband, father and grandfather.  He is a Vietnam veteran that has suffered for 40 years from a gunshot wound and from PTSD.  I just hope God hears my prayer and he gets relief of some kind.

I watched my Mother die from thyroid cancer and my father from dementia, but with this disease, there are so many unanswered questions and so much of the unknown.

Posted 11/18/2008 11:17 PM (GMT 0)

Parisdr, I'm so sorry about your husband.  As a sober alcoholic for 22 yrs., I can tell you that the reason he doesn't want to go to the hospital or to see a doctor is that he doesn't want to be without alcohol, and doesn't want to be told that he needs to stop drinking.  He already knows that.  He just doesn't want to.  In which case, there's really nothing that can be done.  By continuing to drink, he is speeding up his demise.  Death from ESLD is a horrible way to go, even under the best of circumstances. 

My heart goes out to you.

Posted 11/19/2008 1:19 AM (GMT 0)

Thank you Connie.   It is just so hard to see someone you love destroy himself.  I always thought that the reason he doesn't go to the doctor because he doesn't want them to know he is still drinking.  I just don't understand why.  He has so much to live for.  We have 3 children and 10 grandchildren, 3 who live with us.  They all love him so much and it hurts them to see him this way. 

The rum has a hold on him that no one or nothing can stop. 

Posted 11/19/2008 2:17 AM (GMT 0)
Parisdr, My heart goes out to you. I am so sorry for what you and your family are having to watch your husband go through. I am also sorry for all that he is having to endure. Alcoholism is such a sad disease. Many people never overcome it. I'll be praying for your husband and you also.
Posted 11/19/2008 4:24 AM (GMT 0)
Hello Parisdr and welcome to HealingWell. Just wanted you to know that you are not alone.........others here have or are walking in you shoes..Please take a little time out for you.............This disease not only affects the patient..........it takes a terrible toll on the family and caregivers as well.........My thoughts and prayers to you and your family......
Posted 11/19/2008 5:21 AM (GMT 0)

Parisdr, I understand how you feel, believe me.  I watched 2 husbands go through it, as well as a significant other and my own mother.  I know I felt really angry and hurt, even though I knew that they were in the throes of an addiction.  Alcoholism is a disease that tells you you don't have a disease.  Its main symptom is denial.  When one is addicted, you can't imagine life without alcohol, but continuing with it is devastating, too.  It's a terrible place to be.  It is only when one is totally sick of being sick and tired, or the alcohol is no longer doing its job, that a person becomes willing to get help.  For some, that never happens, as is the case with my mother and my 2nd husband.  And yes, it's very painful to see that.  Nothing you say or do is going to make any difference if your husband is intent on slowly killing himself with booze.

It's very important to remember to take care of you.

Posted Yesterday 10:29 PM (GMT 0)
Parisdr, I'm so sorry to hear about your husband. I watched my Mother-in-law die from liver failure caused by breast cancer that had spread and my grandmother has Alzheimer's (I am her legal guardian), so I totally understand how you feel. Watching my brother dying from ESLD has been horrible. He was once such a proud person, so it is so hard for him to allow us to dress his bed sores and pick him up naked off of the bathroom floor after he falls due to severe muscle wasting.

My brother has quit drinking and wants to live, but he just waited too long to get help. He is still in ICU. I am about to post an update on his condition. I'm so sorry that you are going through this, too. I also pray that my brother will be able to pass calmly and without fear. At this point, that is really all that I can do for him. I am really going to miss him.

parisdr said...
I too am sorry to hear about your brother.

My husband has ESLD and at times is very ill. He is jaundice and has excessive swelling in his stomach and has been vomiting and passing blood. He either eats very little or binge eats and eats too much. The problem with him is that he is still drinking, refuses to take the lactuose and see a doctor. I begged him to go to the hospital this weekend but he refused. Sometimes I think he just doesn't care.

I went to church on Sunday and prayed that he would get better or if that wasn't to be, that God just take him and not let him suffer. He is a wonderful husband, father and grandfather. He is a Vietnam veteran that has suffered for 40 years from a gunshot wound and from PTSD. I just hope God hears my prayer and he gets relief of some kind.

I watched my Mother die from thyroid cancer and my father from dementia, but with this disease, there are so many unanswered questions and so much of the unknown.

Posted Yesterday 10:40 PM (GMT 0)
I want to post an update on my brother. He was getting better over the last week. They were able to remove the breathing tube after tapping one lung to remove fluids. A CAT scan determined that the fluid that was causing him the biggest problem with his breathing was in a plural cavity on the outside of the lungs. That fluid was not allowing him to get a full breath. They tapped one side and they were able to remove the breathing tube the following day.

He did really well for one day, but the following day, they determined that he had a new infection (source currently unknown). The day after the tube was removed, he was put on a mask because his breathing was getting more and more labored. They tapped the second lung to see if that would help. By late afternoon, they had to put the breathing tube back in.

Last night at one a.m., a doctor called to ask me about his wishes, saying that he may go into cardiac arrest because he was in shock. They took a verbal statement from me about his wishes not to be revived in the event of cardiac failure. I had to tell two doctors on the phone that we did not wish him to be revived. It was touch and go all night. His blood pressure had a bottom number in the 30's.

Today, he is stable but critical. They say his condition can change at any moment. His kidneys have now failed. They are trying to wake him to see if he has any brain damage from the shock. He's in really bad shape.

I pray that he passes calmly and without fear. I'm ready to let him go. He does not want to suffer like this any more. Yesterday, when he was awake and on the mask, he kept saying "Help me get out of here". I don't know what he meant by that, but I know for sure that I could not tolerate what he is going through now if I were the one that was sick. I don't want him to have to go through this either.

Anyone who has not filled out a Medical Directive and/or a Living Will, please do so today. Please don't make your loved ones be the ones that have to make these difficult end of life decisions for you. If I could get them to unhook him from all support today, I would. Sadly, we did not get his Medical Directive signed and witnessed before he went on a breathing tube, so we have to watch him suffer through this. At least they have enough compassion not to revive him in event of cardiac failure.
Posted Today 1:18 AM (GMT 0)

JustLooking, I'm so sorry that your brother continues to deteriorate.  You have given those here some wise advice.  I think your brother was trying to say that he didn't want them working on him anymore.  Somewhere in his mind, he may have also thought he could leave the hospital.  But the thought was the same...get away from the extraordinary measures they were taking. 

I hope he goes peacefully and does not suffer much longer.

Big hugs,

Connie

Posted Today 6:43 AM (GMT 0)
Dear Justlookin,

i have much empathy with your situation, as my father lies in a hospital because of ESLD and dementia. Although, unlike your brother who has such low blood pressure, my fathers blood pressure is around 215/135. We also did not get an Advanced Medical Directive determined before this latest downturn. You are so right, ALL of US should put one together if not now, then soon. We were asked 5 times in one day what his were and I was dumbfounded. it's a hard subject to bring up with family and with my father, because it's such a finality.
Anyway. I feel for you so much and I will make supplications to the most merciful and loving G-d for the peaceful passing of your brother

Remember that only G-d determines when one will pass to the other life. Keep faith in whatever your faith is and remember to smile and love your brother.

much respect to you.

lulee
Posted Today 2:55 PM (GMT 0)
Justlookin....

I am so sorry that your family is going through this. It is such a hard thing to watch a loved one go through. I admire your strength. I will pray that he passes peacefully and calmly. I am glad to hear you say you are ready to let go. I think sometimes knowing that it's okay for them to go, hey finally let go themselves. This last summer, when my husband was in the hospital (one of three stays), he had a day where he was thinking clearly, etc and so I told him it was time to fill out an advance directive. So, we did it right there in the hospital and have it on file there. I am so glad we got that done when we did, because when/ if the time comes that I have to make that decision, I really don't want to have to fight with his family about it....this way his wishes are made clear. You hang in there.......I will pray that he rests peacefully......

Mer
Posted 11/30/2008 4:37 AM (GMT 0)
Justlookin..

I am truly sorry about your brother and I too do pray for an easy passing if that is what is meant to be.

I myself have ESLD, Hep c , varices, encephalopathy, etc. I just finished doing my medical directive etc because i did not want anyone to have to make decisions

I pray for your brother and you and yur whole family

Karen
Posted 11/30/2008 6:05 AM (GMT 0)
Thank you all for your comment, thoughts, and prayers. I really do appreciate your time and your knowledge. My brother has been pretty much the same since his episode of critically low blood pressure a few days ago. Today, I got a call from a neurologist who said that she was called in because my brother was unresponsive and was not opening his eyes. She said that they have found him to have "multiple lesions from strokes" and wanted to know his wishes about how much care he would want. She mentioned "drilling" the skull and also the removal of an area. I told her that he would not want that and that if I could have unhooked him from all life support, I would have done it already. She called his daughter, and she told him the same thing...No further treatment for stroke. The neurologist said that my brother would "decide for himself his outcome over the course of the next few days". She said that the brain swelling will most likely continue until the brain swells into the spinal column and then he will die. I told her that I believe he died a few days ago when his blood pressure fell off so sharply and that the rest of his body will soon follow. I know he wanted to die that day, but life support kept him from passing.

A few hours after the call, he actually opened his eyes for a family member. His pupils seem very dilated. It's not the same look that we used to get from him. It's obvious to me that he can hear us. He opens his eyes when we ask him to. His vitals are better. His blood pressure is better than it has been since he went into ICU. They are going to do a CAT scan in the morning to evaluate the damage to his brain.

All of us (his mom, dad, sister, and daughter) agree that we will allow him to pass on rather than be revived. We'll have to see what tomorrow brings now that he is opening his eyes and showing some signs of life. Things can still change in a heartbeat with his condition, so I will keep posting on his progress in hopes that it may help someone who visits this board. For now, we are just trying to treat him as we always have and say the things that we feel will comfort him. I believe that he can hear and can understand us. Thanks again for your thoughts and prayers.
Posted 11/30/2008 3:24 PM (GMT 0)
Justlookin, I continue to pray for you and your brother. I am so sorry that he is going through all of this.
Posted 11/30/2008 6:06 PM (GMT 0)
JustLoookin, I am sorry that you and your family have go though this. I will keep you and your brother in my thoughts and prayers.
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