Hello and thank you for taking the time to read this post. 10 days ago, my brother, who is 50, was diagnosed with chirrosis of the liver, Hep B and C. He was told his White blood platlets were 40 and was suppose to be 100. I don't know what that means really? Also, The trunk of his body is yellowish, the whites of his eyes are yellowing as well. We are not 10 days past the diagnosis and I am still trying to get him seen by a GI Dr. Everyone seems to be dragging their feet. I notice he is often tired, he is itchy at night, eating exsessivley but he is not at all overweight. His stomach was swollen, which is what first lead him to going to the hospital. He complains of his right side hurting him a lot. He is taking vitamins, some milk something or other that is suppose to help the liver. I just would like for someone to help me understand all of this, his general practice doctor told him she would suspect he had 6 to 9 mos. to live. How could she possibly know this? She is no expert, and certainly not God. Can someone please lead to to things he could do to boost the white blood platlets while I wait to get him in to a GI, can someone offer some suggestions about their experience or what I need to know, do, or expect. I am truly at a loss and I feel as though my hands are tied. Again, Thank you for your time.
One of our members here ,Hectorsf is very familiar with cirrhosis and it"s manifestations ,so hopfully he will see your post and chime in.
In the meantime let me say I am sorry to hear of your brothers diagnosis.
From what you explain he is very sick and his liver is failing
His platelet level being so low (trouble with his speen) ,the jaundice (yellowing of the eyes and skin) and the swollen stomach (ascites ) is due to fluid build up.
The doctor certainly does not know exactly how long he will live,however it is imperative he is seen by a hepatologist (preferably at a liver transplant centre )as soon as possible to monitor his care.
Sorry to hear of your brother’s recent diagnosis. Others more familiar with cirrhosis will likely stop by later with their input; I’ll share a few things with you right now.
If your brother uses alcohol, he must stop drinking now; this will be a life or death matter for him. If he requires a liver transplant in the future he won’t be considered for TP unless he can demonstrate a period of sobriety, usually at least six months.
He needs to get a referral to a liver specialist soon; preferably a hepatologist, but sometimes only a GI doctor is available; hepatologists focus strictly on liver related problems however.
Based on your description it sounds as if your brother might be experiencing ESLD (end stage liver disease. It’s difficult to state with any accuracy what his life expectancy is, although the MELD score (model end stage liver disease) can offer some insight as to morbidity/mortality. You’re correct; his doctor isn’t God, and there are actions that can be taken by both the medical community and the patient to extend his health and lifespan significantly.
He should discuss ALL meds he takes including OTC products with a doctor. Additionally his doctor will likely assign a sodium free or reduced sodium diet, and may place restrictions on his intake of red meat, especially if he’s suffering ‘brain fog’ (hepatic encephalopathy. He should also schedule an EGD (endoscopy) soon to evaluate whether varices are present in his esophagus. His doctor will also schedule abdominal imaging and AFP markers to rule out the development of HCC, or primary liver cancer; once cirrhosis is established, this will be an ongoing concern.
Good luck to you both and welcome to the discussion group,
Thank you guys so much, but I am near Dayton, Ohio.. Where do I begin with a trsnplant specialist? I can't even seem to get him into a GI with refferal in a decent amount of time. I am very scared and I feel like time is wasting away.
I very sorry to hear about your bother’s condition. It must come as quite a shock.
First, don’t worry about what the regular doctor says. They are NOT qualified to diagnose or treat your brother. But this a very serious condition.
He needs immediate treatment to stabilize his condition.
If would try to get him into "the Cleveland Clinic Transplant Center" I know it is far, but your brother’s life could depend on getting him to the right place as soon as possible. The Cleveland Clinic Transplant Center is one of the best medical center in the world for the condition your brother has. If my life depended on it, I would want to go there.
Here is the number. Call her and tell her the condition of your brother and try to get him to be seen ASAP. They should be able to stabilize his symptoms and then they will take care of him when he needs a liver transplant and for the rest of his life. I can’t over emphasis the need to the best care available as your brother’s condition can be life-threatening!
Phone: 216.444.8770 or 800.223.2273 x48770
Follow her advice. She may have him taken to a local hospital as he needs help now. But Cleveland Clinic may be able to over see his care.
The main point is you want to get your brother into the liver transplant program at Cleveland Clinic. So whatever you need to do to do that so it. I know at first all this is very difficult as it is all new and a steep learning process. But in time this all all make sense.
In the future you can get a local doctor to take care of your brother and he can use Cleveland Clinic to supervise his local care. But right now he needs emergency care that only a transplant center can provide.
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For patients who cannot travel to Cleveland but would like a second opinion from a Cleveland Clinic physician, The Cleveland Clinic offers specialist consultation and second opinions using the Internet. The service, e-Cleveland Clinic, provides online second opinions for patients with life-threatening and life-altering diagnoses. To learn more, see the e-Cleveland Clinic Fact Sheet.
Here is a link to the Cleveland Clinic Transplant Center.
But right now time is of the essence. You brother MUST be seen ASAP at the transplant center.
Later on we can discuss the degree of his illness etc. That can wait. Immediate care is needed. Your brother’s life could depend on it. Don’t delay. Have others help you will this process. It can be difficult but if you work at it, it can be done.
If you have any other questions let me know. Unfortunately I will be at the transplant center here today a good part of the day, so it will take time to get back to you. I'll be back after 7 PM California time. You can send me a private message and I can help you with the details.
FYI: Your brother should stop taking all vitamins as in his condition they could be making his illness worse.
A platelet count of 40 is typical for his condition. But it is nothing to worry about.
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The closest parking garage to Cleveland Clinic is the Euclid Avenue Parking Garage. One entrance is on Euclid Avenue, between E 93rd. Street (Clinic Drive) and E. 96th Street. If you are being driven to the transplant center you may have your driver bring you to the hospital’s main entrance in Clinic Drive, before the car is parked. Wheelchairs are available at the hospital entrance. There is no charge for parking on the days of admission, discharge or surgery.
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Yes. A telephone and color television are provided with all rooms. There is a small daily fee for these services. You will know your telephone number when you check in your room.
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Cleveland Clinic offers two lodging alternatives for out-of- town families and friends of patients admitted to our hospital. The Intercontinental Hotel provides full-service elegance. The Cleveland Clinic Guesthouse is just one block away from the hospital. It offers an economical alternative for overnight or long-term stays. Some rooms have kitchenettes. For reservations for either hotel, call 877.707.8999.
The Alcazar Hotel, located in Cleveland Heights, provides economical long-term lodging. For reservations call 216.321.5400.
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Please bring a supply of all prescription medications you are taking; pajamas or nightgown if you prefer to wear your own; a bathrobe and slippers; toothbrush, toothpaste, razor and other personal hygiene supplies. We ask that all nail polish, nail tips, wraps and gels be removed before your arrival because the nurses may need to check your nails to monitor your oxygen level. If you wear contact lenses, please bring a pair of eyeglasses with you too.
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First, let me thank you for all of the information you have provided me. You as well as all others have been tremendous help. I have taken your advice and called Jacqui at the Cleveland Clinic. She told me, no one has yet to say my brother (Joe) needed a transplant, so thr first thing to do would be have him seen by a Hepatologist. She transfered me to the scheduling department where they took his information and registered him into the system. Now, Joe does not have health insurance as he has worked on a farm his whole life without heath care coverage. So, with that being said, for self pay patients, they have to be cleared by financial serviced which takes a couple of days. Therefore, I could not get him an appointment as of yet.
I called OSU and they have said the same thing regarding financial aid and their wait time is two weeks. I am again, finding myself sitting on my hands but, your guidence is very much appreciated. I don't know what else to do at this point. I am willing to pay for the initial consult myself but, no one is willing to see him until he is permited to do so through financial services. This is crazy. If I am willing to pay for the visit, someone should see him. Period.
I have taken him to apply for Social Security and for Medicaid, which both again have become a waiting game. Social Security gave him an appt. time of 11/28 to apply and Medicaid said it could take up to 90 days or even longer to become approved.
Where do I go from here? This is so sad, I feel for those who are in need of medical care and have none.
boy that sounds like some good advice you got there...sorry to hear this....i didn't notice any life style info...like did he drink?..of course thats just not something you can do with hep c..and if he did when did he stop?..that matters when going through all this.....good luck...billy
I'm so sorry to hear that it gone that far for your brother without any medical help, this is what I had to do when I had to stop work.
1).Before your brother can get S.S. he will need to have to have proof (medical forms) from his doctors involved explains his medical condition he will be approved but yes it will take up to 3 month. People/Persons with Hep C are accepted immediately accepted for S.S. You can file on line.
2). Go down and file for medical assistance with the Department of Human Services (DHS) it might be under a different name depending where you live (State). There should be no excuse for the State to turn him down. I wish the best for your brother and I'm thankful that you are there for him it's not a time to be alone God Bless you both
Without health insurance your brother might have to rely on a local primary care doctor to keep him stable until he can be seen by one of the liver clinics. Make sure he applies for SSDI and Medicaid at his earliest convenience; this is stuff you might be able to help him with. It might be a good idea to gather up any medical history he has; labs, procedures, clinical notes from his primary care doctor, etc. in case SSDI asks for this. They will send their own agents out to round this up as well, but gather it up and have it on hand just in case.
Can he afford to private pay in case he has to wait a while for assistance? SSDI can take a while to investigate and provide entitlement; he might end up having to appeal their initial decision(s), unfortunately. Attorneys can help this process along, and will bill against any retro pay coming from an award of benefits. Even after entitlement awards from them, it’s another wait for Medicare to kick in. I’m unaware of how Medicaid is structured in Ohio, but he should apply anyway in hopes he qualifies.
Be sure to ask both the Cleveland Clinic as well as OSU if they maintain compassionate care programs; they might have funds tucked away for cases like his.
Minimally he needs a full set of labs to better assess his condition.
He will require ultrasound and AFP testing
He’ll also require an EGD and perhaps a colonoscopy to rule out varices
He should consult on diet, with emphasis on protein and sodium intake.
The doctor will want to evaluate any meds he is currently taking; be sure he discusses any changes in meds, including OTC meds with the doctor in advance.
Depending on clinical findings, he might require beta blockers to manage portal hypertension.
Other meds, including Lactulose and Rifaximin might be required as well, again depending on clinical findings.
I’m sure there are more things to consider, but this gives some idea of what to expect initially. Again, if he used alcohol in the past be sure he understands he no longer does; this is crucial.
Good news this morning. The Cleveland Clinic had called me back! They said he qualifies for 100 percent discount and they will also help him with medication. I have been given an appointment time of Friday morning at 7:40. I am so thankful for this! Without the information here, I would still be sitting on my hands waiting for people who don't care to help me.
When I took him to the SS office, they gave him an appontment to come back on 11/28 to do the actual application. We have already applied for the Medical but they said it was a minimum of 3 months to hear back. For now, I am hoping to get him stable, he is sleeping a lot, and appears a little more yellowish today, very forgetful. I hope there is something to help him. I hope his GP is wrong and treatment will help him to live a good quality life.
I just want you to know, Michelle from Ohio is praying for you. With all of my heart, I appreciate each of you who have reached out to me, and to help me though this. You are an amazing group of people who I hope to continue to get to know as time goes on. God be with us all.
I am so thankful for some good advice, yes. As to your question of lifestyle. Yes, Alcohol has been a factor for many years. Howvever, Joe was sober for 2 years until 10/31/2009 when our brother was murdered. Joe fell off the wagon and had spent the past two years consuming some serious alcohol. All the while, never knowing he had any of this going on. On 10/9/2011.. only weeks ago, Joe lost his sister to COPD at the age of 62. Still, Joe was drinking. Since her death, 10/10/11, Joe has been sober. Orginally, He went to the doctor for depression. To help him cope with all of the grief he could not bare. Wanting at that time to never drink again and dedicated to getting back on track. A week after the Dr. Appt. his stomach was swollen, he was in some pain, he was told he was constipated and was given some medication to relieve him of that. A few days later when there was no relief, he went back to the ER, where a doctor did some testing, and told him he had all of this and he should follow up with his GP.
11/4 he was told of the Hep B+C and that he had 6 to 9 mos. to live. This has come about so quickly. Joe continues to be sober with no desire to drink. He is eating healthy but for some reason his eating appears to go on all day and into the night. Always wanting something to eat but never really feeling hungary. I hope this clears up the questions you had. Thank you for your support. God Be With Us All.
Oof, Michelle; this is a huge development! Good for you for advocating for your brother! Cleveland clinic should be able to help quite a bit; how cool is this :o)!
His forgetfulness is typical of someone in his situation; this is likely due to a condition called ‘hepatic encephalopathy’. This occurs as a result of improper protein metabolism, when the liver can no longer filter out toxins in the blood. For the immediate future, your brother will want to avoid red meat; no more beef or pork until he speaks with the doctors on Friday. They will probably start him on a drug called ‘Lactulose’, and maybe Rifaximin. The Lactulose is a non-absorbable sugar that promotes transit time of food through the GI tract; the Rifaximin is an antibiotic. These generally manage the encephalopathy pretty well. Protein remains critical to his diet; so he can take it from beans, chicken, etc. His doctors will elaborate further when he meets them.
Be sure to accompany him to his initial appointment; they’ll likely cover quite a bit of ground and he’ll need a second set of ears along to help him remember what’s been discussed.
Once again, best of luck to you both, and keep in touch-
Wow, The Cleveland Clinic comes through!!!! That is fantastic! The Cleveland Clinic is one of the best places in the world for a person with the medical like your brother to be! This is the best news I have heard in quite awhile.
I am very glad your brother stopped drinking. That is a BIG step in the right directions. Cleveland should be able to stabilize him and give him the meds he needs to ease his suffering. They will do a full work up an access your brother's true health condition.
I totally agree with Bill. Please if at all possible go with him as he probably is having thinking and memory problems. Bring a note book and write down and questions you have and write down all the thinks they tell you. This will be overwhelming at first as with anything that is new but you sound very intelligent and you will learn as time goes on Bill and I and others here will help you to understand what is going on as liver disease is very complicated and it takes years to understand all the basics. But it is important to get as much facts as possible so always write thinks down and at some point you'll want to get a copy of all of your brother's medical records yourself.
By the way I also have hepatitis B &C. Being exposed to both has some implications but that is not anything to worry about now. Right now we are in an emergency situation. Let's focus on getting your brother stabilized and as healthy as possible and we will go from there.
Another thing that comes to mind, and I don't think this will be an issue, but I will mention it just in case...For the Cleveland Clinic to help your brother and possibly allow him to be listed for a liver transplant when he needs it it is very important for him to be "compliant". What that means is for him to follow doctor's orders and do what they say. For example he will need to change his diet. It sound simple but some people find it hard to do. He must do it and be honest with the doctors. It is good that he stopped drinking as someone who is drinking will not be able to get a transplant. Or taking any drugs unless prescribed. They will test him for many many drugs and if they were to find out the he was trying to deceive them they could refuse treatment. The care your brother will receive will not only be some of the best in the world but over time and if he should need a transplant will cost hundreds of thousands of dollars. Even his initial workup will cost many tens of thousands of dollars. So this is a once in a lifetime opportunity for your brother to save his life. He is very very lucky to have you as his sister advocating for him. Personally I have never heard of someone being given free treatment for End-Stage Liver Disease (ESLD). I had to prove that I had over a million dollars in health insurance to pay for my transplant and for all the medicines I will require after transplant. Yes, ESLD is not cheap!
Personally during your visit I would find out who made this life-saving exception for your brother and I would write them a thank you note or card. I am very impressed by Cleveland Clinic doing this. It is very tragic but do to our current health system people who don't have health insurance either get sub-optimum health care or none. And in cases like your brother this can lead to people dying because they don't have insurance. From my point of view it is cruel and there should be nobody dying because they don't have insurance. We are the wealthiest country in the world and every other industrial country provides healthcare for there citizens why we don't choose to is really a sad comment on this country IMHO.
Anyone else you can get to go with you would be good too.
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Hi. I few more comments about your brother before being taken care of on Friday.
"appears a little more yellowish today, very forgetful. I hope there is something to help him. I hope his GP is wrong and treatment will help him to live a good quality life."
IMPORTANT POINT. Until your brother see's the doctor on Friday he should NOT be left alone. He could get sicker and be unable to help himself while he is having a life-threatening complication of his disease.
I don't say this to scare you but as someone who has has been very ill for 2 years and had many friends who have suffered with these complication it is good just to be aware of these possible dangers.
The yellow color is called "jaundice" it is caused by rapid increase in the breakdown and destruction of the red blood cells (hemolysis), overwhelming the liver's ability to adequately remove the increased levels of bilirubin from the blood. In itself it isn't dangerous but it is a sign that your brother's liver is not function properly. He may feel tired, nauseous, his skin my be itchy.
As long as your brother can be stabilized and doesn't have other heath issues he should be able to get a liver transplant and will continue to live for many years. Yes your brother's liver is failing like mine but a transplant with get us a new liver and we can continue to live and recover our health after the transplant. It is no easy thing but many people have done it and I have many friend who are alive today thanks to getting transplant.
While you and your brother are waiting for the appointment on Friday I just wanted to tell you about thinks to look out for as they could be a sign of your brother getting worse and could not life-threatening. If any of these things seems to be happening get him to ER ASAP.
I think you said that your brother's abdomen is swollen. If this is the case if for any reason he gets a fever he needs to go to ER. It is possible for the fluid to get infected and any infections in a person in his condition could be fatal.
"Ascites" is fluid buildup in the abdominal cavity. It is uncomfortable and can reduce breathing function and urination.
"Hepatorenal syndrome" occurs if the kidneys drastically reduce their own blood flow in response to the altered blood flow in the liver. It is a life-threatening complication of late-stage liver disease that occurs in patients with ascites. Symptoms include dark colored urine and a reduction in volume, yellowish skin, abdominal swelling, mental changes (such as delirium and confusion), jerking or coarse muscle movement, nausea, and vomiting.
If you brother starts vomiting blood or black and tarry stools he needs to go to ER immediately! This condition is caused by internal bleeding.
You say you brother is confused. This is a common symptoms of advanced liver disease. It is called hepatic encephalopathy or HE for short. If your brother should develop stupor (acting like he is drunk, failing down, slurred speech) or become unconscious and go into a coma he needs emergency care.
You Rock!!!!!!!!!!!!! I am very moved by all the effort you put into this site. I hope you realize how you have changed peoples life with your support and advise.
Chelle, praying for the best for your brother, you have come to the right place here.
Your too kind slideman. Though I appreciate your positive feedback.
I am just trying to help a fellow sufferer who has been coldly abandoned by by "the system" by every one but his loving sister and it appears The Cleveland Clinic. I can't say enough about how impressed I am by the Cleveland Clinic and their efforts to help people despite their ability to pay.
Michelle has taken on a heavy load and she needs to be support in every way possible. No care giver can do this alone medical support and care is needed also. Michele has shown that everyone must advocate for heath care assistance. I have met too many people that were told that their only option was hospice. Their care givers fought for them and they are alive today because of it. I can never forget that. Some on my friends who not be alive today if they had not fought that advice. This is a very sad situation but it happens way too often.
Morally to me it isn't right to let someone suffer in this country or any country for that matter because they can't afford treatment. But I live here in the US and believe in pushing for a better, more just society. If this is too political for some, well I am sorry but healthcare in this country is political because of the way we have agreed to have it based on profits and money not on the health needs of our citizens. It is a relevant question for persons with hepatitis C to think about as there is no 100% cure and if you should progress to cirrhosis and ESLD you too could end up in the same position. Should society which is us, the American people, who live in the wealthiest country in the world let a fellow American suffer and die because of a lack of money? How many of us could afford to pay hundreds of thousands of dollars if we too needed a liver transplant in order to continue living? Surely America can do better. If after all I have been though and seen first hand had not motivated me to help fellow suffers I would have to be one uncaring selfish human being. I have seen the light the hard way and feel obliged to try to help others in whatever small way I can.
I called it "turning lemons into lemonade".
" If this is too political for some, well I am sorry but healthcare in this country is political because of the way we have agreed to have it based on profits and money not on the health needs of our citizens"
Please Hector i've seen to many people lost here do to bringing politics or religion in the mix................ Stay well
Politics can be a very ugly thing indeed, but Hector is right in that our entire health care system revolved around it. When 12 wks of inc costs 49,000, something is very wrong!! I wonder what it costs north or south of our borders?
When 12 wks of inc costs 49,000, something is very wrong!! I wonder what it costs north or south of our borders?
South of my border the cost is 49,000
The posts above are a wealth of information. I know that others have stressed the importance of your brother "being compliant" with doctor's orders and also the importance of no alcohol, no recreational drugs, diet, etc., as was mentioned above your brother may not receive treatment or a transplant if doctors believe that he will not do the work to help his current and future liver. A couple of questions: does your brother have any type of disability, besides the obvious medical issues, that might qualify him for other services such as the Division of Developmental Disabilites (not sure what it's called in your state)? DDD, if he qualifies, can help with respite, housing, and other services, later when he is stabilized medically. Additionally, with DDD, it could be possible for you to be paid to be his care provider, later when you are past the current emergency. Is the social security that you helped him apply for social security income or social security disability income? I think there is a difference between the two and I believe the SSDI automatically leads to the Medicaid benefit. Not totally sure about that. Also, looking ahead toward the hepatic encephalopathy, future surgery, etc., would you and your brother want to look into having him sign a health care directive and a durable power of attorney appointing you to make his health care decisions if he is incapacitated by his illness and/or under anesthesia?
"Please Hector i've seen to many people lost here do to bringing politics or religion in the mix... "
Really? I see see religion mentioned on this forum, day in and day out. Shockingly even on this thread! I have never seen anybody even bat an eye about it. ???
I am sorry if people are too sensitive to face reality. We have many people on this community right now that are injecting themselves with highly toxic drugs, suffering through various degrees of side effects having transfusions, using powerful :helper drugs...Why? Because hepatitis C is an inconvenient virus to have? I don't think so.
I believe a lot of people treat because they have some notion that by allowing liver disease caused by hepatitis C to progress to cirrhosis and End-Stage Liver Disease is not something they want to risk having happen to them. Especially now that treatment can be up to 80% successful it seems like it is worth the risk of harsh treatment vs. progressive liver disease.
I try to approach hepatitis C and liver disease in an open and honest manner. The good, bad and the ugly. I am sorry that hepatitis C is the leading cause of liver transplants in this country. I know there are people in this country who believe that if a person has hepatitis C they should not be treated but punished for being a intravenous drug user. And people that abused alcohol should not be given liver transplants. I accept that people think that way but I am still gonna do what I believe it. Helping people that task for help and assistance.
But I don't want anybody in this community or else where in my life to have to go through what I am going through or what my friends have gone through to stay alive. There is nothing pretty or nice about it. I am glad most people with hepatitis C have little liver damage and will be able to successfully treat their virus. More power to them. Unfortunately we are not all so lucky. I don't prefer to mention any taboo subjects for the thrill of it but in my opinion Michele's brother doesn't deserve to die because he doesn't have health insurance. I for one am going to do what I can to help him and anyone else I can no matter what others may think or be offended by. I see patients and their loved ones every week waiting for transplants with MELD score of upper 30s and med 40s. All I can say is that if people are offend by my words then they have no real concept of what the final stage of disease look like. ESLD is a nightmare. Shocking and unsettling. And I am glad that other people don't have to witness it. But at the same time I can't pretend that people are treated fairly by our medical system. Call it moral corruption, call it political decisions. Use any construct you prefer, it is all the same thing. I will continue to try to help all those that ask for it. Whether here, on other forums I am a member of and in my personal activities in advocating for hepatitis C patients and liver disease patients.
Thank you again for the information and I will accompany my brother and take very detailed notes. I am not sure that they meant that he would have a transplant paid for. He is seeing a Hepatologist on Friday. That will be covered, any needed medications, and any ongoing treatment. I am going to clarify what is or is not considered as covered on Friday. First, goal is to get him some treatment and get him stabilized. Afterwards, I will worry about next steps.
If your brother is a veteran he can get full medical coverage through the Veteran's Health Administration. He may even qualify for a VA medical disability pension. These benefits have been a life saver for me.
I agree, this thread has amazed me. I can not say it enough, All of the support here is absolutely amazing!
Yesterday, I took Joe to get a copy of all of his medical records. I know I won't really understand it, so instead of upsetting myself, I have left them sealed and have not looked at them. Joe is stil here with me. He is not alone at any time. I work third shift and this morning when I got home from work, he told me he was thinking about taking a walk today. He did stop taking all vitamins as suggested here.
As far as the Cleveland Clinic, I am assuming this 100 percent discount is for office visits and medication only, or any treatment (exray, blood tests, CT scans etc.) I will have to clarify that with them. I would doubt it would be for a transplant, although that would be amazing. When the financial services called me, they ask me only very few questions, His name, age, ssn, address, when was he last employed, how much did he earn, then from those simple questions, they said OK, he will qualify for 100 percent discount which would include his medication. I don't want to give anyone the wrong idea that a transplant is paid for because, I am not sure that is the case, and again, I would highly doubt it.
Joe has taken this very seriously. With your guidance, he has not eaten and red meats. We have been cooking very lean meats, ie. ground turkey, chicken, and lots of fruits and veggies, with no salt,no butter, he even ask me if he could have ketchup, I said I don't know, but we should wait till we know before you do. I think he gets a little upset with me because I stay on him. This morning he said, "Michelle, I think a cappuccino sounds really good!" I said "well too bad! You can't have sugar or caffeine!" he gets a little grumpy but he soon gets over it.
I was wondering, what are the odds of someone getting a liver transplant? Also, could I see if I am a match and give him part of mine? I would have no problems doing that what so ever! If I could save a life, and continue to live my own, what better gift can you offer someone?
Hector, I have all the questions ready to go, I think I am going to take a little recorder if I can find what I have done with it. I must also tell you, along with these blessings of, finding this site with all of you wonderful people, getting Joe into the Cleveland Clinic so quickly, the 100 percent discount, and the will to keep fighting after we have suffered so much loss, I was able to find someone to cover half of my shift tonight. This is not something typical. I work in an inpatient psychiatric hospital on third shift and it is definitely not easy to find someone to cover my shift. I ask a person this morning to please cover the second half and I will cover the first half, and she agreed. This took a huge burden off my shoulders. I have never known this lady to cover any part of our shifts in the past but agreed this morning. Blessings coming when I have felt my faith shaken for some time now.
With all that said, we will be leaving at 3 a.m on the button to find our way to the Cleveland Clinic! I am very afraid but hopeful. Truth me told, I am very tired of putting those I love in the ground. One on the heels of another. Our mother is 86 y/o and has buried 3 of her children so far in her lifetime.
Enough is enough.
I will post something as soon as I know it. I may need some help understanding it. But, I know right where to come for some help.
Thank you all once again. Hector, Bill, there are no words as to my gratitude.
Never stop! Change does not come with silence. I could not agree more, with what you have just said. I am so thankful you are "turning lemons into lemonade" We need more of you in the world.You are an inspiration, and I appreciate you so much! As I am sure countless others do. You and Bill are the bomb digity! lol
I am very sorry that you have dealt with so much death in your life. We are here to help your brother get through this rough patch. By taking it one step at a time and covering all the bases we will position your brother so that when the time comes his will qualify for a transplant and will live through this current crises. I am in a similar position myself and will probably get a transplant in a year to 18 months. Meanwhile I will help you and your brother do all the things needed to be in position for a life saving liver transplant if and when he needs it.
As far as work. Their is a FMLA law that will cover you for taking time off should you need to care for a loved one. You will be able to take up to 12 workweeks of leave in a 12-month period. Unfortunately it is unpaid time off but it could be helpful to know about as things progress.
So there are a lot of resources available to help you and your brother get through this. I and other have experience with these and will be happy to share our experiences with them and help you get the services you need.
So yes End-Stage Liver Disease is complex and daunting, but do-able. If I can do it so can your brother. A lot of it is a positive attitude and a will to live. It sounds like your brother is taking this seriously and doing what must be done. That is all a great sign and will pay off in the long run.
I was wondering, what are the odds of someone getting a liver transplant?
If your brother is in otherwise good health and is doing as well as you say with his absence from alcohol he should have a great chance at Cleveland Clinic. They will do a full workup of his total health when that is done we will know a lot more. Don't worry about it now your brother should get some type of insurance by then.
Also, could I see if I am a match and give him part of mine?
Possibly. We can deal with that when the time is appropriate.
Don't worry about his diet Cleveland Clinic will give him a whole new diet to take.
Whenever you have any questions about anything Cleveland Clinic's advice we will help you to understand what they are saying. So don't worry. There is a big learning curve but you are very intelligent and will pick it up quickly I'm sure. That you are so loving and supportive is the main thing. All else will follow in time.
Let's let Cleveland Clinic get your brother stabilized and back on this feet. Come up with his diagnosis and we will take it from there.
When I get time I will send you a private message about what you will need for your meeting with Social Security so we can get insurance ASAP for our brother.
The big steps have been taken due to your efforts. That is HUGE. I am very proud of you and wish everyone needing help navigating the medical system had a sister and advocate like you. You are amazing and should be very proud that you have over come so many obstacles.
Hang in there. Hopefully you will be able to post while you are in Cleveland. There may be some scary times ahead but we will help you step by step to get through it. We have your back. So remember you and your brother are not going through this alone and perhaps you will meet other caregivers at the Clinic while you are there? And you can share experiences.
You can send me a private message by clicking on my name and sending me a note or message. I will give you my personal info in case you need to contact me at any time. I am traveling back east Sunday night and will be in Connecticut for about 9 days before returning to San Francisco.
Take care of yourself. Remember to do things for you otherwise you can burned out being a caregiver 24/7. Being a caregiver is a tough job sometimes harder than being a patient. So remember you need breaks too. If you can get help from others even if it is for little tasks that is a good thing.
About you being a living donor. You must be in relatively good health and you must be compatible blood types and similar size.
Blood Type Can Receive Liver From Can Donate Liver To
O O O, A, B, AB
A A, O A, AB
B B, O B, AB
AB O, A,B, AB AB
There is also a requirement of body size - there cannot be a large disparity in size. A 5' woman could probably not donate to a 6'2" man for example.
Does this mean, if I am at a healthy weight, overall good health, and his blood type were A and mine were AB, I could give him my liver?
This chart leaves a lot of questions, One example, If Joes blood type is A and mine is AB and we were both qualifying candadtates, the graph shows, I can be a donor but it does not say he can recieve one from me?
Here is a link to the Cleveland Clinic Living Donor Liver Transplant (LDLT) program.
* If his blood type were type A, then he would ONLY be able to except a LDLT from a person with type A or O blood type.
* Blood type can ONLY donate to AB.
So if those are your blood type you can't be a donor. for your brother.
Even with matching blood types you must anatomically match. Only 1/3 of people willing to donate a part of their liver, do match.
On the good side...From what we know about your brother he my already have a high MELD score (Model for End-stage Liver Disease) which could put him high on the list for a transplant so he may not have to wait too long before he receives a transplant. Patients with a higher MELD score are very sick, so they have a better chance of getting a liver transplant sooner. The sickest go to the top of the transplant "list".
Who can become a donor?
People who want to donate their liver go through a complete medical exam to make sure their liver is healthy and that it is safe for them to donate. Safety is important for both the donor and the recipient. The risk of death is real. Talk about the risks with your doctor. In general, liver donors must:
• Be at least 18 years old
• Be in good health with no major medical or mental illnesses
• Be a non-smoker for at least 4 to 6 weeks before surgery
• Be able to understand and follow instructions before and after surgery
• Have a compatible blood type
• Have an emotional tie with the recipient
• Not have a selfish motive for donating
• Have a similar body size
• Be able to go through certain medical tests like blood work, radiology studies, and a liver biopsy
A person should feel no pressure to donate part of his or her liver; nor should any money be given or received. It is against the law for people to sell their body parts. What are the major risks of donating?
Most donors recover fully after the operation and can do normal activities within a few months after the surgery. However, as with any major surgery, there are risks. A donor may develop some problems during or right after the operation; they might also experience problems months or years later. Removing more than half of the liver is a major operation that has some risks. Some of the risk involves specific problems that can occur in and around the liver after surgery. These problems include bleeding, infection, bile leaks, or damage to the bile tree (the ducts that run through the liver). Bile is a digestive juice made by the liver. Other risks can come from anesthesia and general surgery. You could have a reaction to the anesthetic, or you could get pneumonia. You could have problems because of the tubes that will be inserted in your mouth, arteries, and veins. Your blood pressure could change during the operation. There is also a risk of blood clots in your legs.
Although there is a 10 to 25% chance a donor could have complications from the surgery, the most common problem is a bile leak. In rare cases, a donor may die as a result of the operation. Or, if the remaining piece of the liver is damaged, the donor may also need a liver transplant. The estimated risk of dying from the transplant operation is about 1 in 500.
Sometimes donors do not have problems until months or years after the surgery. One of the most common problems is stomach pain and bulges around the scar. The bulges can usually be fixed with surgery. During your medical exam, ask the transplant team about these risks. You may also want to talk to a donor who has already gone through the surgery and can talk about his or her experiences.
What happens during transplant surgery?
The donor's liver is split into two parts. One part is removed for the transplant. The surgeon then closes the wound with sutures or staples. These are later removed at a follow-up visit to the surgeon's office. The remaining liver begins to heal and grow new tissue. It takes about 6 to 8 weeks for the liver to grow back to normal size.
How long does a donor usually stay in the hospital?
Donors stay in the hospital from 4 to 7 days after surgery, longer if problems occur. You will usually spend the first night after surgery in the intensive care unit (ICU). The next day, you may be moved to the general surgical floor where nurses have experience caring for liver donors. The nurses will encourage you to get out of bed and sit in a chair the day after
surgery and to walk as soon as you are able.
How long will a full recovery take?
For the most part, it takes about 4 weeks to recover from surgery. For a month after leaving the hospital, you will go to the clinic for frequent check-ups. Most people get back to work within 8 to 10 weeks, but this differs from person to person. The medical staff will say when it is safe to return to normal life. Federal employees can get a special leave for
being organ donors. Other employers have similar programs, so check with your boss to see if your company offers special leave.
I am so touched by the compassion shown by those of you with the knowledge to help Chelle and her brother. I, too, love this site and more importantly the people who make it so special. Thanks from the bottom of my heart.
Chelle, you and your brother are in my prayers. Good luck ..... and never take "no" for an answer.
We are about to head out! I have several comments to make in regards to posts that I will do when I get more time. For now, as we head out for this jouney, on behalf of my brother, Joe, myself, and my entire family, We would like to thank each of you who have offered support, prayer, and concern for Joe. I (we) are truly touched by all of you. Hector and Bill, without the two of you, I don't know where I would be today in regards to finding my brother treatment. Please know, you are very much appreciated. Hector, for the well of information you have given, I have no words to describe how grateful we are. Please contuinue to keep Joe in your prayers today. I am praying for that his GP is wrong and we have time to help Joe live a long. healthy, and alcohol free life. He is doing great in regards to that. He says he has absolutley no desire to have a drink! He is proving it every day he stays sober.
Thank you all once again.
With Love & Respect,
Michelle, Joe, & our entire family.
In addition to all of the above, this does not happen
over night, it's a lengthily process as you can see and
it is very overwhelming. There will be a lot of test etc as
you might imagine. It takes a lot to get listed if needed.
Then wait for the right liver. Joe should be on meds right now
to stabilize everything going on. I hope they will help him today.
I'm hoping you have good news today......but from experience,
they will run test after test and you may not know anything until
Try and get your brother to sign a release form that gives you
the right to all test results, labs etc. you will need Joe to sign these so they
will release them to you . The hospital will have these.
Also, get a Durable Power Of Attorney for medical, you will need
that in case you have to be the one to make any decisions.ikf it
shoul come to that place.
You've received wonderful information from the folks above, and how utterly phenomenal a sister you are, taking things on and making them happen for your brother... I want to wish you and he all the best of luck. What you have ahead of you is both demanding and daunting, but you've got lots of folks here cheering for you and your brother, and I hope Cleveland Clinic makes things right for him.
If your brother has A pos blood type, he would only be able to receive a liver from other As, or O blood types (if he is A neg, only A neg and O neg). There are certainly other factors in matching, and the Transplant center can help explain all of that to you if you volunteer as a donor for him. If your brother is A and you are AB, you would not be able to be a donor for him, but if he is AB and you are A, that may be possible.
Welcome to the forum, and wishing you all the best. ~eureka
UPDATE: Hi everyone! I am sorry I have not gotten back in touch since our visit with the Dr. at the Cleveland Clinic. I had to work up to the time we left for Cleveland, spend the day at the clinic, and the 7 hour round trip drive to come right back into work wore me out a bit. I am a little more refreshed and I am going to try to explain my understanding of what the Dr. has told Joe about his condition and treatment.
First of all, I took copies of all testing CT scans, Ultrasounds, Blood work, etc. The Doctor reviewed the written reports prior to meeting with us. He spoke to Joe about his symptoms, questioned him about his drinking, questioned him about depression, and medical background.
After gathering all the information from his questions, he ask him who told him he has 6 to 9 mos. to live and how they came to that conclusion. Joe told him his GP told him this and that she showed him on her laptop these numbers. The numbers had a peak, saying Joe had hit his peak and the numbers were on the decline, which meant Joes health would deteriorate as those numbers declined. This is where she got her estimation of how long he would have left to live. The Doctor did not respond this, simply nodding his head that he understood I guess. (I do not understand what these numbers are)
The Doctor ask Joe to lay on the table and he began to listen to Joe. Joe still tearful from answering all the questions a few moments earlier. The doctor began to use his fingers to tap on Joe’s stomach. It sounded very hollow when he did that. He than had Joe sit up and put his arms straight out while holding his hands upright. It appeared he was looking at the steadiness of Joes hands and arms? The Doctor than ask us to step out. Assuming he was checking Joe out further, possibly rectally. Than a few moments later, we were told we could return to the room.
Once returning, The Doctor said first, Joe, You definitely have type B Hepatitis. Going on to say, he could not tell him for sure that he had Type C Hepatitis because the full test was not done. My understanding is that sometimes, in a small percentage of people, a body can cure itself of this. They would still have the antibodies that would show Hep C but in truth do not. So, he was doing more extensive testing (blood testing)
The doc also said, he thinks what is happening was that Joe has recently contracted this hep B or that the hep B is what is causing the liver to show these some symptoms of the cirrhosis.
He never gave Joe a time limit. His words were, "Joe, I think we can get more miles out of you." I think you can live a good quality life if you follow my instructions. Going on to tell him first and foremost, he can not have one drop of alcohol ever again in his life, and once he begins treatment, he can never stop it unless told to by him or another qualifying physician. That once this treatment is stopped, the disease will progress with a vengeance.
He wants to do an endoscopy and a colonoscopy. This is scheduled for January 6th. and we return for further instruction and results on January 9th. Eventually he will have another CT scan of his liver. Not sure when. but, the Doctor could not open the CD ROM from the hospital with the Ultrasound, CT Scans, Xrays and whatever else was on there. So, the Dr. was unable to see the livers condition. Only having the written reports from the Dr. office visits and the ER visits, and the findings of the other tests.
He said, later, we will talk about transplant. Right now, we will focus on treatment. He left us with the feeling that Joe could live a much longer life than what was given. When we were leaving the office, the Doctor gave Joe a hug and said, we will see you back in January, after the holidays. He prescribed the medication, Tenofovir Dixoproxil 300 mg. Doc. said this medication is over 30 dollars a pill. Now, we have to figure out how were going to get this medication for Joe at 969.00 a month with no insurance.
He told Joe to take his water pills all in the morning instead of 2 times a day. He increased one of the water pills, the one with potassium.
As far as Joe's diet, He told Joe for now, he could have whatever he wanted in moderation. To be watchful of Joes alertness. Telling us of the red meat possibilities. Told us if he ever became confused to go to the ER immediately. My thought on allowing Joe these things now, caffeine, sugars, red meats, is because, Well, he said that this disease will cause muscle loss and that the protein intake was good and at t his point the benefit outweighs the risks. My thought is, Joe has stopped drinking, if everything is taken from Joe in such a short period of time, a possible relapse? Or, he will decide those things later as he has more accurate details of Joes condition? I could be wrong, just a thought.
That was about the gist of it. I am sorry to rush but, I am at work and I have an admission to prepare for. Thank you all again for your continued support. I look forward to your responses.
God Be With Us All!
Wishing you all the very best as well!!!!!!!!!!!!!!!!!!!!
Congrats on finding out things are better than you thought.
The trip sounds well worth it!
I'm still shaking my head at the doctor who gave him months to live. I was never told anything like that. It's not a good idea because no one knows.
Please, don't give your brother red meat.
Fish, chicken, and eggs are fine.
Caffeine, sugar, no problem.
But stay away from red meat, it can increase ammonia levels which causes encephalopathy, severe mental confusion amongst cirrhotics.
I landed up delirious in the ER because of this.
Also, keep the salt content low. He takes pills to reduce the fluids.
Salt increases them.
But he can have chocolate with coffee and pumpkin pie,whipped cream, turkey, stuffing, ( light on the salt) gravy, yams,everything else!
You want him to enjoy, then help him because if his diet is good, he will feel better and it will help him heal, honestly!
Hugs from afar,
Thanks for getting back to the forum with this info, Michelle. Before I forget, drug manufacturers often sponsor patient assistance programs for those that are uninsured or underinsured. A good website to investigate these resources is needymeds.com. Here is their home page; click on either ‘brand name drugs’ or ‘generic name drugs’ in the left hand column to see if the mfgr sponsors a PAP (patient assistance program). Here’s the webpage for tenofovir:
Their PAP phone number is (800) 226-2056; these programs are generally income based rather than asset based, so Joe will probably be allowed to own a home and car etc and still qualify assuming he fits the income parameters.
Also, you might contact the doctor’s office and ask them to forward all copies of labs, procedures and especially clinical notes from the previous appointment. Take these and start a home medical file; this will be invaluable in the future should he need to see other doctors, SSDI, etc.
It sounds as though Joe is minimally infected with HBV (Hepatitis B virus). From your description it also sounds as though Joe has the HCV antibodies, but further testing (probably the HCV RNA by PCR) is required to see if active Hep C is present. HCV/HBV coinfection is possible; when will they confirm this for him?
From your writing it’s unclear whether the doctor has actually diagnosed ‘chronic’ or ‘acute’ HBV. While most of us in this group aren’t well informed about this disease, there is an important distinction between the two. Be sure to ask for clarity about this; it seems the doctor might feel Joe has been recently infected and his jaundice is a result of initial infection and perhaps not of long term chronic disease. I’m not sure if HBV antiviral drugs ( tenofovir) are prescribed during the acute (initial) phase of infection
The doctor was probably tapping Joe’s abdomen to check for the presence of ascites; this is an accumulation of fluid often present in cirrhosis. The observation of his hands was to see if he had a neurological/motor control condition known as ‘asterixis’, also associated with cirrhosis.
It seems more data is needed to determine whether Joe actually has cirrhosis. If this is the case, then as the doctor mentioned, diet might not be an issue at all. Good luck with all this, and be sure to let us know how things go,
So pleased for you and your brother that the visit to Cleveland went well and that you got good news there! Because 'acute' (recent) viral hepatitis infection can mimic some of the symptoms of cirrhosis, your brother's condition could be reflecting recent exposure; however, it's also possible that he actually has cirrhosis from chronic (long-term active) infection, so the additional testing should provide more information. If it's recent infection, that would be a good thing, because many adults who are exposed to hbv do not become chronic.
The endoscopy and colonscopy are important tests in case Joe actually has cirrhosis. Because liver stiffening up in cirrhosis can cause what's known as "varices" (collateral blood vessels that can burst and bleed), it is a routine test for folks with suspected cirrhosis. Both procedures can be done simultaneously, and they are done under sedation, so Joe need not worry about any discomfort... the worst part will be the prep, really.
If further testing does not confirm cirrhosis, your brother may not need additional imaging; the truth is, pictures and images don't really have high sensitivity in detecting cirrhosis. The gold standard for staging liver disease is biopsy, but it's also possible that the additional testing ordered may give the doctor additional indication one way or another. However, if cirrhosis is present, imaging should be done regularly every 3-6 months (MRI/CT or ultrasound) to rule out other concerns.
I agree with OH that Joe should avoid red meat unless cirrhosis is ruled out completely, and to keep salt to a minimum. As far as caffeine, he can enjoy -- there seems to be evidence that coffee is actually good for the liver -- I try to get my husband to drink coffee, but he hates it lol. The muscle wasting is a major concern in cirrhosis, so if Joe wants protein, he should fill up; he'll just have to get used to asking 'where's the beef?' :)
One of the things you can do at home to help keep an eye on Joe is to check his feet, ankles, and calves for swelling (edema) and to check his weight daily; water retention (ascites) usually shows itself in rapid weight gain, so it's OK if Joe puts on a pound or two the week after Turkey day, but if he's putting on 5-10 pounds a week, you know to hide the salt shakers and call the doc.
With the good news from Cleveland, I hope you and your brother can really enjoy Thanksgiving! Best wishes.~eureka
“It sounded very hollow when he did that”.
He could be checking for the hardness and shrinkage of the liver and for ascites (fluid stored in the abdomen). It usually gives a thud sound when tapped of the sides of the abdomen.
“He than had Joe sit up and put his arms straight out while holding his hands upright. It appeared he was looking at the steadiness of Joes hands and arms”?
This is a test for hepatic encephalopathy (he-PAT-ik en-sef-ah-LOP-ah-the)) (HE). Persons with HE except Minimum HE will display an involuntary flapping of their hands.
“Telling us of the red meat possibilities. Told us if he ever became confused to go to the ER immediately.
Again this is due to HE. The liver normally filters toxins such as ammonia created when digesting red meat for example. But when a person has advanced liver disease the liver is unable to perform all of its functions well and the toxins get into the blood and flow to the brain.
Here are the signs to look for. NOTE: The patient himself will not know they are behaving oddly most of the time. Only someone else can see it. It is like the drunk driver who thinks he is driving great while in reality he is weaving all over the road.
Here are the signs of HE to watch for, from mild to extreme.
*Short attention span
*Changes in sleeping habits and difficulty in speaking or writing may occur.
*Confusion and amnesia (inability to recall past events).
*The breath may have a musty sweet odor.
*Flapping motion of the hands when the arms are outstretched and muscle stiffness may also occur.
*Sleepiness, decreased awareness, and coma may occur with severe hepatic encephalopathy.
Okay so Joe has Hepatitis B. They are still testing with he has Hepatitis C also. Good to know.
To read more about Hepatitis B and Joe's drug follow this link.
“The doc also said, he thinks what is happening was that Joe has recently contracted this hep B or that the hep B is what is causing the liver to show these some symptoms of the cirrhosis.”
If you don’t mind I would like to help you clarify the above two statements for your own understanding. Joe could have recently been infected by hepatitis B. That is possible, but cirrhosis (scaring of the liver) takes 20-40 years to develop. So this means something, Hepatitis B, C, alcohol or many other things that can cause advanced liver disease over decades has damaged his liver.
“He wants to do an endoscopy and a colonoscopy.
This is to look for varices. They occur in persons with cirrhosis. When the liver becomes scared, the blood that normally passes up from the lower body through the liver must find another path to get back to the heart. So what happens is the blood flow through other vessels that are not designed to carry this extra amount of blood. So they can burst due to the increase blood pressure. This is a dangerous complication of cirrhosis as it can cause a person to bleed out if they don’t get to an ER and have the bleeding stopped.
“Eventually he will have another CT scan of his liver. Not sure when. but, the Doctor could not open the CD ROM from the hospital with the Ultrasound, CT Scans, Xrays and whatever else was on there”.
This is usually caused by an incompatibility between the formatting of the CD between the two hospitals. The Clinic’s doctor wants to see Joe’s liver. All persons with cirrhosis can develop liver cancer (HCC) like myself. Especially persons infected with Hepatitis B. (I was exposed to both Hep B and C). So the doctor is doing the right thing. Even if he gets the imaging data from the other hospital(s) Cleveland Clinic probably has better, higher resolution machines which can see more of what may be going on.
“When we were leaving the office, the Doctor gave Joe a hug...”
This is the type of doc that everyone should have! Great!!!
****Tenofovir Dixoproxil 300 mg****
(tenofovir disoproxil fumarate)
Gilead the manufacturer has the “Advancing Access” program. Joe may be able to get it for FREE.
With the VIREAD My Access program you can get financial assistance if you’re:
• Insured with a high co-pay
• Uninsured and pay cash
• Uninsured with a low income
Here is the number to call to see if he qualifies for the program.
VIREAD calling 1-877-627-0415 today to see if you qualify for the My Access program.
He will probably need to prove how much he makes so he needs to be prepared. I would just tell them that he is in a desperate situation ad he really needs.
FYI: If there is any problem let me know as I have a friend who used to work at Gilead until about 6 months ago and I may be able to find out who’s in charge and I will advocate for Joe myself. They are about 45 miles from where I live. I can’t promise anything but I will do what I can.
Also...I'm sure your doc told Joe about the possible serious side effects of this drug, but here they are so you have them in writing.
Call your healthcare provider right away if you get the following symptoms which could be signs of lactic acidosis:
• feeling very weak or tired
• have unusual (not normal) muscle pain
• have trouble breathing
• have stomach pain with
• nausea (feel sick to your stomach)
• feel cold, especially in your arms and legs
• feel dizzy or lightheaded
• have a fast or irregular heartbeat
“…muscle loss and that the protein intake was good and at this point the benefit outweighs the risks”.
This is what happens to all patients with End-Stage Liver Disease. So it is important to maintain good protein levels. Chicken and fish are good sources of protein. Also the protein drink “Ensure” makes a drink (you can find it at CVS, Walgreens and some supermarkets) that many patients use. It provides up to 30 grams of protein per bottle and comes in chocolate, vanilla and strawberry and tastes great in my opinion. Many very patients are enable to eat but the can still drink their Insure.
Michelle, Can you clarify what you mean here as I don’t understand exactly what you are asking. Thanks. “if everything is taken from Joe in such a short period of time, a possible relapse”?
“My thought is, Joe has stopped drinking, if everything is taken from Joe in such a short period of time, a possible relapse? Or, he will decide those things later as he has more accurate details of Joes condition? I could be wrong, just a thought.”
You did an awesome thing to help you brother and support him when the medical people really let him down. You should be very proud of yourself. Wow what a great sister and person you are!!! Take care of yourself. Keep posting when you have new questions or updates and everyone here in this community will help your brother step by step. You are now headed in the right direction and the doctor sounds awesome too.
My very best to you and your brother. You are a blessing of a sister! Thank you for walking with him through this. I don't have anything to add to the expertise shown here, but I wanted to say how proud I am to be associated with such wonderful, caring strangers, who worked so hard to see a better outcome for your brother. This is truly self-less. When society so often has little respect for our fellow man, this reminds us that all is not lost.
God bless you for going the extra mile!! I am sharing this with the prayer group, as an example of what happens when we work together and do not lose faith.
Sounds like good news from Cleveland. I am glad to hear that your brother's prognosis is better than what you thought last week. Thank goodness you got in so quickly and got to a good center for treatment. It sounds like there will be lots of tests and follow up with Joe's new doctor. It can be a long road finding out the specifics and getting on a treatment plan, but it also sounds like the doctor is optimistic. Hopefully this will help you and Joe feel more optimistic too. Overall, hepatitis is generally a slow moving disease, so if Joe's liver damage is not severe, there will be time to treat and make informed decisions with his new doctor. Best wishes, and keep us posted.
Thanks again, Everyone for the continues support and very kind words. I would hope every family has strong fmily values and are truly there for one another when it really counts.
Hector, "Michelle, Can you clarify what you mean here as I don’t understand exactly what you are asking. Thanks. “if everything is taken from Joe in such a short period of time, a possible relapse”?
“My thought is, Joe has stopped drinking, if everything is taken from Joe in such a short period of time, a possible relapse? Or, he will decide those things later as he has more accurate details of Joes condition? I could be wrong, just a thought.”
What I was trying to say as my thought on the doc. not restricting Joe's diet may be, that it is because of his recent sobriety. Maybe the doc. felt it best at that time to allow him red meats etc. in order to prevent Joe from feeling as thoughso many things were being taken from him all at once. If someone gets overwhelmed by anything, they can relapse. My thought was, I was wondering if this was not the reason to not restrict diet and do it very slowly?
Yesterday Joe's upper legs were swollen. His hands are cramping. He drank a little less than a gallon of water yesterday because he thought the hand cramps were from dehydration. He also said his output was very minimal yesterday/\. I am not sure what is causing this. He is on 2 water pills. He also complains of his upper stomach, under his breast bone on the left side hurting him. I have not spoken to him yet today as he went to spend the night with out mother. I think to give me a break as he is irritable.
I am absolutely overwhelmed by the incredible love, support and help that all medhelp members have shared throughout this post. It is like witnessing a miracle...and shows how much impact one can have on another's life. It actually brought me to tears as I read this and saw all the love, sharing of experiences and valuable advice given.
Chelle, I so admire your love, strength and support and Joe is very blessed to have you beside him through this and being his advocator. Hope you are keeping up your strength also as I am sure you must be exhausted, emotionally and physically.
Again, good luck to you and your brother Joe. When you have a moment look in the upper right hand portion of your screen. You’ll see ‘Inbox | Logout | My Shortcuts; there might be private messages waiting for you there. You can access these by clicking on Inbox if you like.
You mentioned that Joe's feet and legs are swollen. This could be edema from ascites. I am not a doctor, but it would be good to keep a watch on that. If he is retaining fluid, his body is having difficulty moving fluids around, which can increase and become serious. I would recommend that he keep drinking water, walk and move around at least once an hour, decrease or cut out salt, and call the doctor to see if there is anything else that he should do. It could be that he is adjusting to the new diuretic and the new time that he takes the diuretic, but your best bet is to call the new doctor and ask for advice.
I wasn't able to sleep so I am half awake writing this but I did want to get back to you before I go out today. So please forgive typos an abrupt transitions of thought....
Thanks for the clarification about the diet issue. All doctors are different so you may be correct. I don't have experience in the area of alcoholism and liver disease so you may be right.
Are Joe's mental symptoms very bad? I thought I recalled you mentioning some obvious symptoms of HE? Confusion and disorientation etc? Not everyone with liver disease has hepatic encephalopathy and it can manifest from minimal changes to extreme changes in mood and behavior in people that do have HE.
Also I believe Joe was prescribed lactulose and Xifaxan during his visit? They should take affect within a few days an will help to minimize any HE he may have.
A few other comments on some questions and statement yo made if I might....
"upper legs were swollen"
* This is called "edema" or fluid build-up. The diuretics will help to reduce the fluid but it could take a week or two for full affect. So this should improve soon. It is not dangerous just ugly for us that experience it. Especially if you are vain like me. ha ha
"His hands are cramping".
* This is another common symptoms of ESLD. You are correct, dehydration can and can cause this. So Joe needs to drink plenty of water. A potassium and sodium imbalance caused by the diuretics can also cause cramping. The doctor will constantly monitor Joe's blood tests to make sure this doesn't happen and modify the diuretic dosage to reduce an imbalance. Also cramping can happen for no known reason. People with ESLD in time learn to live with cramping. Cramps tend to come and go at various times and we just learn to get through it. But first it is good to see if their is a known reason for the cramping and then correct it, if possible. Cramping can be very painful. Many a night I have jump out of bed due to leg cramps and then tried to walk then off. Lots of 4 letter words usually accompany cramping. At least with me. ;-)
"He also said his output was very minimal yesterday/\. I am not sure what is causing this. He is on 2 water pills. He also complains of his upper stomach, under his breast bone on the left side hurting him."
* The some common affect of not having 3-4 bowel movements a day is increased HE. As the ammonia will build up in his intestine and then good into the blood which will go to his brain. That is the importance of "keeping things moving". This is potentially the thing that is the most concerning of all his symptoms. Boating and cramping though unpleasant, are not harmful per se, HE can be dangerous. As it can lead to erratic behavior, stupor and coma in the worse case. Also drinking plenty of water helps to keep bowel movements regular.
"He also complains of his upper stomach, under his breast bone on the left side hurting him"
* Frankly this is difficult to say what the pain is from. Contrary to popular belief there are no nerves in the liver itself. Did he mention the pain to his Cleveland Clinic doc? What did the doc say? When are livers are cirrhotic the liver shrinks so it is actually smaller than earlier in the disease when the liver in inflamed and larger. There are other tissues around the liver that do have nerves in them. I assume that Joe has had a CT scan or MRI with contrast to look for liver cancer?
Gee, I am sorry I don't think I can be helpful about liver pain. If it is a problem I would call Cleveland Clinic and see if they can explain the possible cause to Joe.
To ALL OF YOU,
First of all, as today is Thanksgiving Day, I would like to take a minute to let you all know how thankful we are to each of you. Your thoughtful words, your encouragement, sharing your knowledge with us has left me without proper words to describe my gratitude. Today I celebrate each of you. Giving thanks for you.
I am very sorry to hear you did not rest well. I hope tonight is a better night for you.
Joe's mental health is pretty good overall. At times he is forgetful, while telling me a story about something, often he will stop and ask me, where was I? or What was I going to say. Some days are better than others in regards to this. His mood, wow! He is often grumpy, irritable. It does a person good to have a break from him lol. He realizes this, he is apologetic afterwards, he is a bit testy at times. I chalk some of this up to depression, and the transition he is going through being sober. He is only a month in, so hopefully once Joe's health is stable, his mood will get better. We find ourselves laughing a lot at times, and he says. ahhhh it feels good to laugh!!!! He will say it with a sigh, almost as a relief.
"Edema", I think I have a better understanding of this. As I said to Bill, I am a worry wart by nature and I have been so fearful this meant something that could take his life and I not know how to help him, or overlook something. I feel better knowing this is common and the diuretics' will help with this.
The Cramping: Thank you for your clear explanation of this. It makes me feel better to know this too is common. I told him to drink Powerade a couple times a day. It has potassium and electrolytes it is so I thought it would be more helpful than just plain water?
Output, I am not sure what is causing that either unless he was so dehydrated that his body is simply retaining the water? It happened the same day he complained of the cramping. Yesterday, he had non cramping. I did not hear him complain about output either.
Bowel Movements, I have not ask, and he has not spoken of this. I will ask him about that one. If he is not having them regular, should he take a laxative or something?
Stomach Pain, His belly is much bigger than normal. For Joe, he looks as though he is 4 mos. pregnant. So, I wonder if the pain is associated with the edema or the fact that he is eating a lot right now. My understanding is that people often lose weight with these diseases, Joe eats all day, and when he wakes up through the night. The Doctor laughed and told him to keep on eating. lol Yes, the CT scan, X-RAYS, Ultrasound, were done. However, the file would not open for the specialist. So, I don't know about the possibity of cancer.
The Meds, Viread 300 mg. Joe got his medication yesterday. Now, hopefully he will see some improvements in how he feels?
I appreciate your previous offer to try to help Joe get his meds. He was able to get on a charity where they will pay for his medication for 1 year. Do we know anything about this medication Viread? Is this a common medication, has anyone had any experience wit his?
Again, I appreciate all of you. I printed out all of your kind words and help from this thread to share with my family today. I know they will also be as touched as Joe and I are by all of this.
I told him to drink Powerade a couple times a day. It has potassium.
* He should NOT take in extra potassium. The Spironolactone can cause too much potassium is retained. High levels of potassium can be dangerous. The best approach to diet is to eat a healthy normal diet. The only modifications should be low sodium, no red meat, moderately high protein (to minimize muscle wasting). This is the reason Spiro is combined with Furosemide (Lasix). They are given in particular dosages to retain the proper electrolytes balance.
"Spironolactone is a diuretic, which is commonly referred to as a "water pill." It is known as an "aldosterone antagonist," which means it blocks aldosterone receptors. Aldosterone is a hormone in the body that causes the body to retain water. By blocking aldosterone, spironolactone increases the amount of salt and water that the kidneys remove from the blood. This extra salt and water is passed out through urine. By increasing the amount of water removed from the blood, spironolactone causes a decrease in blood volume. Because of this effect, spironolactone can lower blood pressure and also help with water retention.
Spironolactone is a "potassium-sparing" diuretic, which means that it does not cause low potassium levels in the blood (like many other diuretics). In fact, spironolactone usually increases potassium levels, an effect which can be used to treat low potassium levels (hypokalemia)."
"Spironolactone is effective for treating water retention. The medicine is also approved to treat a special kind of water retention called ascites. Ascites is the accumulation of fluid in the abdominal cavity and is usually the result of liver disease."
"Output" = urinating. Okay, now I understand. That is not too much of an issue. Defecating is, as I mentioned before.
Stomach Pain, His belly is much bigger than normal. For Joe, he looks as though he is 4 mos. pregnant. So, I wonder if the pain is associated with the edema or the fact that he is eating a lot right now. My understanding is that people often lose weight with these diseases,
* Yes, the fluid retention of the abdomen is called "ascites". Again this is normal for person with End Stage Liver Disease. It is one of the primary complications that we have. It is very uncomfortable. Depending how extensive it is it can make it difficult to breathe and eat too as it can push against the diaphragm and stomach.
The diuretics should also reduce the ascites. As I said for me it takes about 1 week to notice any difference and about 2 weeks for the abdomen to go back to near normal. If the bloating was extreme there would have drain it at the hospital so that is good news.
* Viread is THE drug used to treat hepatitis B. And is relatively new. Three years since approval by FDA for hep C. Cleveland Clinic knows what they are doing. This is the drug your brother should be on.
The Viread won't make him feel better but will slow or stop the continual damage that hep B is inflecting on his liver.
"VIREAD works by interfering with the normal working of an enzyme that is essential for the hepatitis B virus (HBV) to be able to reproduce itself. VIREAD may help lower the amount of hepatitis B virus in your body by lowering the ability of the virus to multiply.1 VIREAD will not cure HBV. VIREAD may improve the condition of your liver." There is no "cure" for hep B like there is for hep C but it help to manage the disease.
What will make him feel better is the diuretics, lactulose and Xifaxan (Rifaximin). Is here taking any other meds? Maybe Nadolol?
Hector in Connecticut, for now.
Your brother is very lucky to have a sister like you, and it's so good that you're observing and learning and supporting him. Joe has a few challenges going on at the same time... his sobriety is a tremendous credit to his effort to get well, and the elevated ammonia levels can make him cranky and forgetful. It's important for the caregiver to have time away to recharge as well.
Just some logistical thoughts about what you said... no, no, NO powerade... start reading labels for ingredients. To minimize the edema and ascites he has to reduce salt intake and it's absolutely vital that he not consume more than 1000 mg a day of salt... the less the better. His ascites is adding to his discomfort, so important not to make it worse.
In addition to the things Hector mentioned above, the muscle cramping could also possibly be electrolyte imbalance or magnesium deficiency, but it's not something to guess at... it's important that you keep track of all of his symptoms and address them as necessary. Muscle wasting is very frequent with progressive liver disease, so it's essential that Joe stay as active as possible: walk, bike, swim... whatever he's up to doing physically, he should do.
If you find Joe develops constipation, which can worsen his symptoms, he can take a stool softener like Colace to help him have regular bowel movements, but remember that even over-the-counter products can be dangerous to someone with severe liver disease, so always check with his docs if he's having symptoms that you think need to be addressed.
When my husband was first diagnosed, I found this website a tremedous wealth of information:
Hector and Eureka, Thank you so much for your help. I put a call into the doctor yesterday (Wednesday) about Joes muscle cramping and minimal output. Today he is in agony! He has been cramping all day, he has had a really bad day. His stomach is "tight" "Swollen". He sent me a photo of his stomach just a little bit ago and it is a little bigger than yesterday. In my opinion.
The cramping is making him out of his mind. He told me, he is still not Urinating. He feels as though he is drinking a lot and he is putting nothing out in comparison. He also said, "If I had a gun right now, I would shoot myself" I know he would not do that, but it is the pain talking.
He thinks it is the "water pills" that are making him cramp. He drinks water and it helps but, the pain soon returns. He is defacating fine as I discussed this with him after reading Hectors previous post.
I do not know what to do for him. It is 9:20 pm east coast time and I do not know how to help him, The agony in his voice is so hard to listen to. I told him to try a hot bath but he can not get into the tub.
the doc changed his water pills to taking them both at the same time in the morning as before he was taking one in the morning and one at night. It does appear this cramping started when he changed the time of his meds. Also, he said he took his pills at 4 this morning. It is now 9:22 pm. 18 hours later.
He did drink some poweade this morning. I told him to drink no more. He drank some yesterday as well. grrrrrr
I feel helpless!!!!!!! I wish the Doc. would have called back yesterday!!! Frustrated!
I’m sorry to hear your brother is having so much trouble. It’s entirely possible Joe’s cramps are due to electrolyte imbalance due to his diuretics. I can’t comment intelligently on his inability to urinate, although this might be connected somehow to this as well. The problem is without lab results and proper knowledge there’s really no way to figure out what’s wrong. He might need to go to the ER tonight if he’s that uncomfortable.
The abdominal swelling might be due to ascites; occasionally doctors remove as much as 6-7 liters (quarts) of fluid via a procedure known as paracentisis:
When this is severe the patient will have a greatly enlarged abdomen, looking quite pregnant; however often it’s to a lesser degree as well. However, his doctor in Cleveland checked him for this less than a week ago and he was negative for ascites, correct? Do we know if he has a firm diagnosis of cirrhosis yet?
He really needs to be seen by a doctor. If the pain or cramping persists, if he develops a fever or he becomes disoriented get him to ER for evaluation. they can order labs STAT if required and offer therapeutic care.
It’s hard to imagine bananas or fruit being an issue right now. Be sure to journal these problems so you or he can call the doctor in Cleveland again when possbile. Best to you all,
"he is still not Urinating"
He should call Cleveland Clinic ASAP! Cleveland Clinic should have given your brother an emergency phone number in case things got worst.(?)
Phone: 216.444.8770 or 800.223.2273 x48770
Maybe she can direct him.
Joe is now under the care of Cleveland Clinic. This is very IMPORTANT. They need to coordinate all of his medical care. Even at the local hospital.
JOE SHOULD GO TO ER NOW! His kidneys could be shutting down. This is not uncommon in patients with very advance liver disease. The longer he doesn't urinate the worse the damage to his kidneys. As I said Cleveland Clinic MUST oversee his care. Joe is very ill and you don't want the ER doing anything that can make his condition worse.
Sorry but advanced liver disease is very complicated ad I can't cover all issues in any group of postings. Michelle I will try to send you with a person message my direct info so you can reach me 24/7. Look at your personal messages. I am not always online.
Sorry to hear that Joe is so uncomfortable... he must NOT consume any sodium in order to help his condition improve. My understanding is the water pills do take some time to work, but if Joe's internal fluid sodium levels are high his body will continue to retain water.
You must explain to Joe that every piece of food and every drop of liquid he consumes that contains sodium (and Powerade falls into this category!) is going to make his pain worse. Since he is not urinating, he should drink 'moderate' amounts... enough to make sure he gets hydration, but so much as to add excess fluid, as it will only make his pain worse.
I wouldn't hesitate to leave another telephone message for the Cleveland Clinic; there should always be at least a physician on-call to answer urgent questions, and if Joe's discomfort is as he described, he may need some intervention or a visit to the ER if things don't improve.
Just a final thought, Chelle. As Bill mentioned, if fluid retention gets very bad for Joe they can intervene as necessary, but all interventional procedures carry some risk, so it is always best to use preventative strategies as much as possible to avoid having to pursue other therapies, though sometimes doing everything right isn't enough either.
Bananas should be fine for Joe. My husband's TP nutritionist had once mentioned "BRAT" as a safe food diet cirrhotics: bananas, rice, apple sauce, toast. Hope that helps, and hope Joe can be comfortable soon.
Take care of yourself! ~eureka
In order to not consume sodium, all labels must be read for sodium content. Even some organic prepackaged salad contains salt. Things you'd never think of, have added sodium. Bread and cheese are often high in sodium.
So what can he eat? Preferably, freshly prepared food, vegetables, eggs, chicken, tofu, fruits, etc.
Good point about the bread and cheese, OH.
We'll have to start calling it the BRA diet :).
Cheese is definitely on the "no" list too, Chelle, not only for salt, but dairy can increase ammonia and encephalopathy. Really hope Joe's doing better.
I am sorry I have not been on here for a bit but, I have been picking up extra hours at work with the holidays among us as well as the fact I needed a break from this situation for a minute. This has become a bit too much. My 86 y/o mother has landed in the hospital with pneumonia on top of the worry of Joe's condition. Joe's other sister, Sharon took him back to the Cleveland Clinic where the Dr. has said, although Joe had gained over 22 lbs in 2 week that there was not enough to "drain" from him and that the fluid was within the "walls". I was not there so I really don't understand. The spot that Dr. tried to drain is still leaking since the attempted drain. A question about that, if there is not enough to drain, is this a good thing?
As of today, I had to call the Dr. because Joe is miserable. Bloated. Joe's Lasix was increased to 80 mg. in the a.m and 40 mg. in the evenings. His cramping has gotten better since eliminating one of the diaretics, the one with the potassium. He added another one that starts with an A but I can not remember the name of it. Anyway, He was on 5 mg. of that and also increased it to 10 mg. He will begin these increases today. (Saturday)
The Dr. did say it is not common for someone to take this much diaretic and not be able to urinate very much at all. Joe has a new scale which he will use every day to see if he is losing any weight but his legs and his belly are more swollen than I have ever seen them. He is having trouble breathing, even at rest. I think he would feel pretty good if it were not for all of the fluid retention. Although, he sleeps A LOT!
Thank you all so much for the contunued support. I have so many questions and so little time these days. I am feeling very anxious myself. I have been on edge and Sharon has been wonderful taking over. She is been working hard taking care of mom and Joe so please keep her in your prayers. She is an amazing woman with teenage grand-children she is raising and her husband was in a coma for 6 mos. after a surgery. So, she is burning the candles at both ends as well.
At work so I have to run, thanks a million everyone.
Joe has been very sick. He is in pain on his right side and he hurts all over. Vomiting and very sick. Legs swollen as well as his trunk. He is weak as well. He is still retaining fluid which the Dr. says is in the "Walls" and there was not enough to drain but the drain site is still leaking.
The local hospital is transfering Joe to the Cleveland Clinic. I guess his urine looks like grape juice but the scan showed no blockage. They said he may have an infection in his trunk. The dr. just increased his lasix to 80 mg. in am and 40 in pm and increased another from 5 to 10 mg. I can't remember the name of it. but, I am affraid. He is in agony! On top of it all, my husband has found out his last day of work is Friday, he is losing yet another job which means I can not take off to go to Cleveland! I have to go to work as it will all fall on me now. What is going on with my brother guys??? IS this common? The dr. said friday, it was uncommon to have all these diaretics and not be able to unrinate. I am feeling a little stressed to say the least!!! I don't know what's going on!!!
So much on your plate.. I hope your mother is on the road to recovery, and really sorry to hear about your husband's job situation... sometimes it feels like when it rains it just pours. From what you are describing, it sounds like the ascites is under control with the drain, but the overall fluid retention is "edema", which cannot be drained.
Essentially, Joe's cells are holding on to water, within the cell 'walls', so it's not like ascites where there is a pocket of fluid to drain. My understanding is that diuretics usually do the trick, so I can't comment on what might be causing Joe to still continue to swell since they did not find blockage.
With liver dysfunction, it's not uncommon for the kidneys to also be compromised; have you communicated with Cleveland Clinic about Joe's pain level ... perhaps they can help with analgesics since the diuretics are not giving him comfort? Considering everything, I do believe it is in Joe's best interest to be transferred to CC. Infection is not uncommon with fluid retention in cirrhosis; you didn't mention if Joe is running a temperature, but important to rule out infection with his symptoms.
I wish there was more I could say or do, Chelle, but I don't have much experience with the symptoms Joe is having. Unfortunately Hector is indisposed today so won't be able to weigh in, but I really hope the Cleveland transfer will make Joe more comfortable and get his symptoms under control. Sending you healing thoughts and prayers. ~eureka
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