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Family member diagnosed with Cirrhosis, now what???

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Posted 10/19/2009 8:26 PM (GMT 0)
Hi I am new....and googling all over looking for information.  I am more confused now than when I started  sad

My brother was just diagnosed with cirrhosis.  He had 6 litres of fluid drained last week.  This is the 3rd time he has been in the hospital in the last year.  However this is the first time he has had to be drained.  BUT...the other 2 times he was in a small county hospital. 

I am so frustrated....the GI doc he saw said he should start the process to get on a liver transplant list and to follow up with his family doc. Well, my brother is self employed and has no insurance and has been to sick to work.   The hospital just sent us home after 5 days with that suggestion and a few prescriptions.  I want to arm myself with as much knowledge as possible to try to help but am so overwhelmed I don't know where to start.  My husband is going to take my brother to social security to apply for SSI this week, but I know that is a slow process.

Here are some of the things they told me in the hospital.  The GI doc said on a scale of 1-10 (with 10 being best) his liver was a 3, they did an endoscopy and did not find esophageal varices (yet), colonoscopy with good results.  He does have ascites and portal hypertension.  I overheard the nurse say one day that his ammonia levels were 82 at one point,  bilirubin levels were 11.2 at one point, they gave him Albumin? by IV and also protein (or is Alumin protein?).  I spent all day at the hospital and haven't had time to research until this weekend and now I am starting to see what I should have asked or listened for. 

Can we call the hospital to get his records?  I think the more we know the better we can battle this.  I am just all over the place....sorry for the rambling. 

Thanks,

Cheryl

Posted 10/19/2009 9:20 PM (GMT 0)

Welcome to the forum, Cheryl!  I'm glad you found us!  I am so sorry that your brother has liver disease. You will find a lot of information and support here.  First, take a deep breath and try to relax.

First of all, your brother needs to be followed by a hepatologist.  From what you've told us, his primary care physician should refer him to a transplant center.  They are often in teaching hospitals, which usually will offer free care (up to a point) if a person has no income, assets, or insurance.  Regardess, he should be seeing a hepatologist as soon as possible and worry about the cost later.  It is good that he is applying for SSI this week.  Tell your husband to write in the "comments" section or tell the caseworker that he has end-stage liver disease.  They will confirm this either by letter to his doctor or through his medical records.  He has to sign a release form to get the medical records released, either to him or to SS or a transplant center, or to all of them.  For each person or organization he wants to have the records, he must sign a separate release form.  He can call the hospital and ask to speak to Medical Records.  When he is connected to them, he should ask for a release form or forms to be mailed to him.  He must sign this/these and send back to the hospital before they will release the records.  They usually charge so much per page, too.  It would probably be cheaper for him to get one complete copy and then have copies made himself, especially if he or a family member has access to a printer.

To answer your question about albumin, it is a plasma protein and necessary for balancing the body's fluids.  The high ammonia level probably led to hepatic encephalopathy, in which the patient is "not himself" and confused, combative, etc.

I suggest that you look in the folder at the top of the forum page, entitled Hepatitis Resources.  There you will find a lot of information about liver disease and its progression.  You can also search some older posts here for information on cirrhosis, ascites, liver transplant, etc.

Another thing he might want to do while he is still coherent is to make out a Living Will and assign someone as his Health Care Surrogate, to make medical decisions if he is unable to.  Since the HIPAA laws went into effect, privacy issues have become really strict.  It is a necessity for him to do this while he is still able to function.

Again, welcome.  You will find a lot of support here.

Hugs,

Connie


Posted 10/20/2009 1:12 AM (GMT 0)
Hi Cheryl,

I am sorry to hear about your brother, I know exactly what you are going through.   If you read my thread you will learn alot about what to do.  I started right where you are.  We have accomplished much in the last month or so.  When you fill out the SS application tell them this is a "TERI" case, for terminal, that should speed up the process.

Blessings and welcome to the forum, the people on here are awesome!

Harp.

Posted 10/20/2009 7:16 AM (GMT 0)
Harpa (if I may call you that :>) I did read your post.  Wow...you are amazing!!  I am just so overwhelmed at all there is to do.  However, I am not sick and my brother is so the least I can do for him is try to do the legwork.  At least since I posted this I feel I have some direction to go in.  Rick and Connie, thank you for your information and support. 

Is all cirrhosis considered terminal?  Or is it by the time a person is diagnosed with cirrhosis is it considered terminal? 

My husband has been sick for 2 years with vascular problems and I have to take him to his specialist 3 hours away today so I can't work on my brothers issue today, but tomorrow I am taking him to the social security office.  It seems that is where we have to start.

Again, thanks for the help and I am sure I will have more questions. 

Posted 10/20/2009 5:13 PM (GMT 0)

Cheryl, cirrhosis is scarring of the liver and is irreversible.  However, it doesn't necessarily kill a person.  I was diagnosed with cirrhosis in May of '07 when the rt. lobe of my liver was removed, due to cancer.  They biopsied the left lobe and found cirrhosis.  I probably had had it for awhile.  However, I am stable.  I also have hep C, which undoubtedly caused the cirrhosis.  I take no medications for my liver, except diuretics for fluid retention, but do abstain from red meat...which your brother should do, also, as it's the most difficult thing for the liver to digest.  I keep my life as stress-free as possible and eat a lot of fresh fruits and veggies.  I do get followup with blood work, CT scans, and a visit with my hepatologist every 6 mos.  No drinking or drugs that aren't prescribed, of course.

So I really don't feel that the cirrhosis will kill me.  It's possible that the cancer can come back--in the left lobe or in a different organ.  It's also possible that some unforseen illness or accident will kill me.  I just don't think about it.  Cirrhosis is NOT necessarily a death sentence.  However, in your brother's case, because of his hospitalization and draining, and the suggestion that he be referrred to a transplant center, it is probable that he will need a transplant.

Hugs,

Connie


Posted 10/20/2009 10:19 PM (GMT 0)
Thanks for the explanations and your thoughts on this.  I do know that the disease is not reversible or really treatable other than with a transplant and/or diuretics etc.   I guess seeing or hearing the word 'terminal' still startles me a bit.  Connie, I totally agree with your outlook...treat yourself and your body the best you can and deal with things as they come up.  I believe we all have a number and who knows when it will be called. 

I just wasn't aware that when I take my brother to SS office that I should say terminal. 

I am so afraid that my brother will either give up or he doesn't think it is as serious as it is.  One of the resident docs told him (when I wasn't there) "just take care of yourself and you will live a long time".  Which is what I would like to hear too...but I also heard the GI doc who did his endoscopy, drainage and read his CT scan say....transplant and your liver is a 3 out of 10.  So...I tend to listen to him and take it very seriously. 

Thanks again to all of you, I have been reading the forums and they are so informative especially with the little things that I don't think about or forget to ask or have trouble weeding out in all the big stuff!!

 

Posted 10/21/2009 4:52 AM (GMT 0)
Hello Cheryl and welcome. What a great sister! With so many sites and so much information........anyone would get confused and information overloaded. I know I did too when I first started searching. Boy was I glad to find this site......It has been a life saver for me and lot's of others. There's nothing like communicating with others who know exactly what you are going through.

You are absolutely correct in thinking that this needs to be taken real seriously. And your fears are justified. But you have to learn to take that fear and turn it into action, which it seems like you are already doing...... Take the ball and run.

If you or anybody else goes to the doctor with your brother, (someone should go with him), take a note book with the list of your questions. Write down the answers and anything that the doctor wants your brother to do. Sometimes stress will hinder your memory and you might forget something that is very important. You should make a list of all his meds and dosages for your brother to take to every appointment. ( Make copies of it.)

Again..........welcome........thoughts and prayers......
Posted 10/28/2009 3:36 AM (GMT 0)
Hi Cheryl,

Just wondering what was happening with you and your brother.  How is he doing?  Has he found a Hepatologist?  How are you holding up?

Prayers and warm blessings to you all.

Harp.

Posted 11/11/2009 1:10 AM (GMT 0)
Hi Harp,  Thanks for asking.  Since the hospital stay I have been gathering paperwork (birth ceritificate, w-2s, dr reports etc) for SSI.  I went last Friday the 6th and filled out his SSI application.  I have an appointment this Friday the 13th with Job and Family Services for a Medicaid card and food stamps.  I was able today to get his electric bill and gas bill paid through another organization.  There is just so much danged paperwork!! 

As for his health, he hasn't drank in 5 weeks (since before his hospital stay).  The yellow in his eyes is almost gone.  His belly is still a little swollen but his legs/feet are not.  He is losing weight though, like in his face and shoulders etc.  He thinks that is good that he is losing fluid, but I read somewhere about muscle wasting and need to research that.   Job and Family services told me it is possible to get a medicaid card while waiting on SSI.  I went to the hospital to get copies of his medical report from his stay in October and they told me it would cost around 80.00 shocked .  I know SSI and Family Services can request it for free but I just thought if I had it IN HAND it could hurry the process along.  I decided I would take the 80.00 and pay his water bill. sad .   The hardest part is I don't have a diagnosis or prognosis or levels or anything in writing, like a report.  The only thing I have is my notes when I was able to catch the doc. 

Today is his 48th birthday and my mother and I met at a local pizza shop to celebrate.  He was talking about the sodium levels in foods so I know he has been cognizant of watching that. 

Harp - I have re read your posts several times for pointers and tips!!  Each time something new comes up that I need to do,  I look to see if you had said anything about it or if anyone replied to you with answers!! I guess I am using you as "reference material"!!!!

I feel like I am flying blind with this whole government aid business.  But, I am diligent and I love my brother and will not give up!! 

Thanks all for being here!

Cheryl

Posted 11/11/2009 4:36 AM (GMT 0)

Cheryl, you can request specific reports.  You don't have to get the entire record for your own use.  For instance, you could request all blood work and radiology reports from his scans.  That should cut down considerably on the cost.  Then let SSI obtain his complete records.

It is great that he hasn't had any alcohol in 5 weeks!  Please do be aware, though, that he will need to go to AA or alcohol counseling (whatever the transplant center requires) for 6 mos., and his attendance must be documented.  He has to have 6 consecutive months of sobriety prior to being evaluated for transplant.

Hugs,

Connie

Posted 11/11/2009 11:29 AM (GMT 0)
Thanks Connie.  That is a great idea about requesting certain records.  duh....why didn't I think of that!!  And yes, we are aware about the documented 6 months of AA.

It just seems like we can't do anything about his health until we get his SSI, medical card etc.  It is frustrating not being able to go to a dr now that he has been diagnosed.  It is also frustrating that SSI etc has become almost a priority over his health.  At least though he is not drinking, watching his salt intake and he is down to less than 1/2 pack of cigs a day. 

Thanks again wink

Posted 11/11/2009 6:09 PM (GMT 0)

caw, I know it's frustrating.  A lot of the treatment of this disease seems to fall into the "hurry up and wait" category.  It's great that he is taking an interest in doing the right thing.  You should also warn him against eating red meat.

Hugs,

C.

Posted 11/13/2009 9:43 AM (GMT 0)
Cheryl,

My brother went into Dr appts for the drainings because he had to, though not as much as he should have in the beginning because of money.  Medicaid kicked in 3 weeks after we applied and they covered the 7 weeks prior to him getting approved (so 4 weeks prior to applying).  I don't know what state you live in but some Medicaid can go back 90 days prior to approval, you should check with your Family Services.  Yes, our family felt the same way about having to get through the red tape before we could really get going on medical care.  Your brother's diet will be his most important thing he can do for himself right now, (besides not drinking) sodium being a major factor.  Hang in there, it sounds like your doing a great job, he is blessed to have a sister that loves him so much.  Prayers are with you.    Harp.

Posted 12/1/2009 12:15 AM (GMT 0)
 Hi All - Just an update on my brother.  We did go to Job and Family services and they issued him food stamps which took effect the following week.  That is so helpful as he is really trying to eat right.  It takes foreverrrrrr to go to the grocery with him because he reads every label  smilewinkgrin which is good.  He hasn't drank since Oct 11th which is also good.  We got papers back from SSI to fill out.  Basically the same thing we already filled out, but we will do what we have to do.  I took him and my mother to her brothers in Indiana for Thanksgiving.  We stayed overnight and had a really good time together.  He has been sticking close to mom and I since this has happened.  I think it has made him stop and think.  He looks so skinny though.  They told us that Medicaid could take a year or more to be determined. So we are going back to the free clinic in December.

Without rambling on...I think I might have told you my mother has cirrhosis as did 3 of her sisters and their mother. (all of whom NEVER drank...socially or otherwise).  Well, my nephew (brothers son) died in September.  He was 25 years old and fell in the shower and hit his head.  He called his mom and told her and she told him to go to the ER.  He didn't.  He laid down and fell asleep and never woke up.  He lived in Florida and I just couldn't get it out of my head.  I ordered his autopsy and got it the other day.  They did a full autopsy because he was so young and healthy.  They noted that he had early stage cirrhosis.  That just freaked me out.  He didn't drink either.  (of course my brother did but..) He evidently inherited my mothers liver.   I always have my liver levels checked every January.  This year however I am going to see if there is a more ...shoot can't think of the right word...so I'll just say "a more better test" to check my liver also.

Again, so glad you are all here.  Sad for the reason but glad nonetheless!

Cheryl

Posted 12/1/2009 1:12 AM (GMT 0)

Thanks for the update!  I'm so glad that your brother is doing what he can to contribute to healthful eating.  After awhile, you can scan those labels pretty quickly, mostly zeroing in on sodium, fat, protein, and calories.  Good to hear you all had a nice Thanksgiving.  The family may have had autoimmune hepatitis, which I believe is genetic.  If you want something other than liver enzyme testing, ask for a CT scan with contrast and explain why it's needed.

I've never heard of Medicaid taking that long to be approved.  Usually, it's a matter of a couple of months at most.  However, different states may vary.

Be sure to keep us updated!

Hugs,

Connie

Posted 12/1/2009 1:37 AM (GMT 0)

Caw,

On the issue with state funded insurance, you can attempt to force it along by reminding them that he is terminal and needs LIFE SAVING treatments and prescriptions. Also check your local hospitals, private hospitals do not have to treat you but hospitals that recieve state and federal monies have to and offer payment plans or free care for low income. You wont know till you ask.... and ask. If you end out being his medical advocate you will find a forceful demanding yet respectful attitude will get you very far in this. Also there are some financial organizitions that can help you....look on the internet I dont remember all of them but they are there. Sometimes a hospital Social Worker can move the state medical insurance along quicker. Our Social Worker had Doug approved in less than 30 days, they get it expidited and they get the money for the hospital!

Sue

Posted 12/2/2009 1:09 AM (GMT 0)
Hi Sue,  I just posted on Harps thread about your Red Binder!!  I told the person at the Medicaid office he had cirrhosis and the dr wanted him to be evaluated for a liver transplant and they told me that was not considered life threatening.... Can you believe it?  Well, we filled out the paperwork anyway.   I did get him an appointment at the hospital where he was admitted in October.  He has an appointment Dec 10th which I will go with him (with our new binder :>).  I will definately ask for as much paperwork as they will give us during our visit. 

And yes Connie I am going to ask for a CT scan in January.  My doc is great and will do anything I ask her.  I have already started watching my own protein and salt intake. 

Thanks both!!

Cheryl

Posted 12/2/2009 3:09 AM (GMT 0)
Cheryl, a transplant is not considered a priority. There is no sure thing so you have to use the terms of terminally ill, that is the difference he needs the insurance etc to get proper care and treatment for his illness...... this has to be stated on all forms that ask your reason or disability. Your Dr can also do forms for a handicapt  placard wether he wants to use it up to him but some days at hospitals it is a god send and in some major areas it allows free street parking and or discounted parking again ask, if you live in an apartment they have to mark a space close to apartment for you under the American disability Act. Some states have a rehab center that will help him to retrain or take tech courses if he is able for the future after transplant. Ask and look... If he is able to get out couple times a week classes will make him feel like he isnt wasting away. My hubby took web design they paid for school, computer and all books. I try telling people all the time there are programs but they just dont broadcast them.

Sue

Posted 12/8/2009 12:06 AM (GMT 0)
Hello - I am taking my brother to the free clinic this Thursday at the hospital where he spent a week in October.  This is the same hospital where he had his fluids drained and they did every test under the sun. 

My question is what questions should I ask.  When I made the appointment they asked me the reason and I told them follow up and medication refills.  But what else should I ask or request they do? 

I was not savvy enough to get any paperwork or labs when he was discharged.  (learning all the time) I want to be prepared this time.

In a nutshell, all we really know is and this is only verbally.

  • he has cirrhosis,
  • the doc said on a scale of 1-10 (with 10 being good) his liver was a 3
  • he should be evaluated for a liver transplant. 
  • he had 6 litres of fluid removed
  • he does not have esophageal varicies
  • he has portal hypertension

Any ideas or suggestions greatly appreciated.

Thanks!  Cheryl

Posted 12/8/2009 12:49 AM (GMT 0)
While you are at the hospital on Thurs., find out where the Medical Records Dept. is (oftentimes in the basement.)  If your brother is able to accompany you, so much the better.  First you need to obtain a release form so that his records can be released either to him or to you, but he will need to sign the release form.  Depending on how busy they are, you might be able to get them within 15 min.  Or you may have to have them mailed to him.  They generally charge about $1.50-2.00 a page.  Therefore, just request his History & Physical and Discharge Summary from his time in the hospital, as well as his most recent labs.  That will keep cost down and provide you with the necessary info.  Once you have this information, you can compare upcoming test results, etc.  It might also give you an idea of what questions to ask.  I would ask if they've calculated his MELD score.  Once you have his labs, you can calculate it yourself online at:

http://www.unos.org/resources/MeldPeldCalculator.asp?index=98 

or the Child-Pugh score which some hospitals use at:

http://homepage.mac.com/sholland/contrivances/childpugh.html

I'm sure those who have transplant experience will think of questions you should ask.

Hugs,

Connie

Posted 12/8/2009 3:33 AM (GMT 0)

Cheryl, Okay you need to ask them about symptons to be aware of that suggest changes needing immediate medical attention. I dont know what his doses of meds are so it is hard to think of what should be good questions for you to get answers to. Of course his INR, Biliruben and Creatin(SP) levels are a good guide as this shows his blood production and counts, liver function and kidney function. This makes up his meld score, they will probably check potassium as lasix(floursimide) will mess with that. Which is why you will find Dr's use that with Eldactone(spironolactone) to off set that. His sodium level needs to be checked too, that tells alot with kidney function. His sugar levels also, I forgot what they call that, the one done by lab not machine. Poor liver function does mess with sugar levels on some people. Ask if he has access to meet with a dietician for some good diet plans. Might as well ask to meet with a social worker too maybe help with some of the hurdles.

Sue

Posted 12/8/2009 4:25 AM (GMT 0)

For the sake of accuracy, it's furosemide (generic of Lasix) and Aldactone (spironolactone.)  I take both. 

Rick, do you mean fasting blood sugar level?  Or something else?

The apt. complex I moved to provides a form for paramedics, in which the tenant lists all medications, medical history and surgeries, special health problems, etc.  That form goes into a plastic sleeve that they also provide, and is to be hung on the inside of your apt. door.  That would also be a handy thing to grab on the way to the ER, even if paramedics aren't involved.

Also, I provided a link itoday in the Hepatitis Resources folder, to an article on How To Baby Your Liver, found on the RealAge site online (Drs. Oz and Roizen.)  I think I will start a separate topic on that, too, as they gave some good info.  But also do ask for a meeting with a nutritionist regarding diet.

Hugs,

Connie

Posted 12/8/2009 3:26 PM (GMT 0)

Hey thanks for the spelling corrections lol..... my glasses work great for up c;ose and far away and my laptop is in between so I type in the blind zone and dont know where all the letters are with out looking....lol yeah one of the GETTING OLD issues. Kind of like doing inventory before getting out of bed, got to make sure the joints are working, not a pretty sight when they arent, doug called it the zombie walk.

Sue

Posted 12/8/2009 8:00 PM (GMT 0)

Sue, I'm quite familiar with the Zombie Walk.  LOL!

Rick, sorry, I attributed that to you, instead of Sue.  Here's what I was referring to:

"His sodium level needs to be checked too, that tells alot with kidney function. His sugar levels also, I forgot what they call that, the one done by lab not machine."

Hugs,

Connie

Posted 12/8/2009 11:47 PM (GMT 0)
Hey Thanks all!! 

I wrote down all of your suggestions along with what I could think of.  It is a free clinic so I am sure I won't have much time and want to make sure I get things covered.  I think I need to ask them what kind of treatment plan they suggest (for someone with no insurance at the moment). 

Is the blood sugar test you are thinking of called an A1C test?  My mom has diabetes so I am a little familiar with it.  They did that test on my brother in October and it was good.  But, seems like things can change pretty quickly with cirrhosis. 

It sure helps having someone to run my questions by.  You all are so great for helping me and others with your experience.  I can talk to others but each disease/illness/condition is different and it just helps me tremendously to have all of your specific knowledge (both medically and emotionally).

I will probably be back on here after the doc's visit with more questions!!

thanks again,

Cheryl

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