I'm new. My brother has been DX with Cirrhosis of the Liver

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harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/19/2009 5:06 PM (GMT -7)   
Hello,
I have spent many, many hours on the internet and many hours reading the posts on here concerning liver disease.  My brother, 49 years old was DX with Cirrhosis of the Liver about 2 1/2 months ago.  I believe the process probably started about 2 years ago when he started having problems with weight and fatigue.  He was a partyer in his younger days and the last 10 years a beer drinker.  The day he found out he had Cirrhosis he stopped drinking and stopped chewing tobacco and has not had a drop since.  He said he thought it would be hard to stop drinking but he did not have any side effects.  The Dr's put him on Potassium and a vitamin and mineral supplement, as well as a dieuretic, (which he seems to keep having allergic reactions to).  He started getting better, but then a plateau and has rapidly got worse.  He has the Ascites, and last week had 10 lbs of fluid drained, earlier times even more than that.  His muscles are wasting away in his face, and he is experiencing bouts of Hepatic Encephalopathy.  I do not know what his MELD score is.  I have so many questions (maybe too much information) rolling around in my head right now, I am not sure where to start.  O.K. to start, my brother had a small well respected commercial and residential painting business he had to let go.  He does not have health insurance, Medicaid said that he first needed to apply for Social Security Disability, which he said he probably does not have much in that either, and then Medicaid may be able to help out where SSD does not.  How much is a Liver Transplant?  $500,000?  Right now my dad is paying out of pocket for the Paracentesis (draining of the fluid in the abdomen) which costs about $700 each time.  I have checked into Liver Transplant Hospitals and the closest is about 8 hours driving time, if he could even handle driving that far.  From what I am reading, it appears that even though he does not drink anymore he would be required to go through AA.  Is this true?  We hear from Dr's that he may have 4 months, or he may have 1 month.  There are 9 of us in our family
(7 kids) and both of my parents, still active, 82 yrs, and 83 yrs.  We have been blessed and have never dealt with anything like this so it has been very difficult.  My brother lived up by my mom and is staying with her.  The rest of us range in driving distance anywhere from 1 1/2 hours to 10 hours away from her,  and are trying to get up there to help out and to visit with both my brother and my mom.  She would like us to space out our visits so it doesn't feel like a wake.  I know this is especially hard on my mom, especially being in the midst of it.  We are a close family and love our brother very much. 
We know he will not accept a live liver donation because he does not want to put anyone in the family at risk because of his doing, and  then there is financially and time wise, his Dr's don't seem to even know.  The Dr's were talking about a TIPS (Transjugular Intrahepatic Portosystemic Shunt) but that could increase the H.E. and cause further Liver decay due to decreased blood to the Liver.  Has anyone had this done before and what were the results?  I think my dad and one brother might be able to swing out of pocket for this to help prolong his life, but will it really? It could also shorten it.  And then there is the Peritoneovenous shunt  that takes the Ascites and reenters it into the venous system, but one of the risks from that could be an influx of pressure in the bloodvessels causing ruptures.  Has anyone had this procedure done?  The Dr's say his blood Glucose levels are normal and he is not Jaundice, so something must be working in his Liver, although he does get sugar cravings.  There is no doubt according to the Dr's that his Liver is not producing Albumin, and I have read that when Paracentesis is done that Albumin can be administered to replace some of what was lost in drainage of the abdominal fluid.  Has anyone had this done?  The Dr.s do not have him on Lactulose.  When he is able he eats toast, cereal, potatos, chicken, turkey, fish, fresh vegetables, fresh fruits and skim milk.  He seems to lately be getting down mostly Ensure.  He used to be a body builder and asked the Dr if a Whey predigested protein would help and the Dr told him he could try, but maybe the amino acids are not going to be absorbed if the Liver is not producing Albumin.  The Soy Protein I was reading about on one the threads, is that like the Silk Soy Milk or something like Spirutein Powder?  My heart aches for my brother, he wants to live.  He came right out and said he did this to himself, he just never thought it would happen to him because it was only beer he drank.  This is a guy who last Thanksgiving won $3000 and instead of spending it on himself, he gathered up a group of homeless people and hired a chef and had him cook them a Thanksgiving dinner, he would give you the shirt off his back.  We don't know what to do, try some kind of affordable surgery, is there really some kind of financial help to pay for a transplant, is there enough time, or do what we can to make him comfortable?  How long can he last without a transplant, and what would the quality of his life be?  Yes, at this point I am crying, our family and friends and our churches are praying for him.  I think he is losing hope, but we are trying to help keep the hope alive for both him and us.  Any help would be appreciated.  Thank you so much, and I pray for the Lord's abundant  blessings upon each and every one of you. 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/19/2009 5:56 PM (GMT -7)   

harp (if I may call you that for short), I am sorry that your brother and his family are dealing with liver disease, but I'm glad you are here.  You will get a lot of information and support here.  First of all, I'm really glad to hear that he stopped drinking immediately upon diagnosis of cirrhosis.  However, it is true that he will not even be evaluated for a liver transplant until he has 6 months of documented attendance at AA or alcohol counseling approved by the transplant center.  Is he seeing a hepatologist?  He needs to be.  Then let the hepatologist make a referral to the closest transplant center.  Meanwhile, he needs to go ahead and apply for SSI/SSD.  He will be evaluated for both.  SSI is for people who do not have enough work history, or haven't paid enough into SS to be eligible for benefits through SSD.  If he qualifies for SSI, he would automatically get Medicaid.  If he qualifies for SSD, he would get Medicare...but there is a 2-year wait from the time he first applies.  So he needs to get on this right away.  If he qualifies for SSD, he may be able to get Medicaid in the interim if his income is low enough.  Since he has had to give up his business, he may qualify financially.  These are things he can only find out by applying.  He has nothing to lose and everything to gain.  It's best for him to gather his medical records for SS and not wait for them to do it.  Also, almost everyone gets turned down the first time they apply.  At that point, he should appeal...but probably also get a lawyer.  The lawyer will not require any payment unless the case is won...and then it will be 25% of your brother's back pay, automatically deducted by SS.

He may need a different diuretic and should ask about this.  Regarding the TIPS, we have a member here who had it done with very good results.  Rick, are you out there??  Also, a spouse's husband had it done, also with good results.  I'm not familiar with the peritonovenus shunt.

If your brother is experiencing bouts of encephalopathy, he should ask the doctor about Lactulose.  He may need to be on it.  Someone should go with him to every doctor's visit to make sure that the right questions are asked and that he understands what is said.

I'm not familiar with soy protein as it relates to cirrhosis patients.  Ensure is good, though, if he can get it down.  Slim Fast tastes a little better than Ensure and the only difference is that SF has fewer calories.  (And I never lost any weight on it.  In fact, it has a high fiber content which gives a feeling of fullness.)

It's amazing how people think beer is not harmful.  It has the same amount of alcohol in a 12-oz. can as in a shot of liquor.  It's just more dilute.  It's good that he is on potassium and a vitamin-mineral supplement.

I also think it would be best to work out some sort of rotating visits from the siblings.  This would be more helpful to your brother and to your parents.

I believe your other questions should be answered by a hepatologist.  I'm sure you will also get some input from people who have "been there, done that."

Again, welcome, and don't give up hope.

 



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 9/19/2009 9:06:03 PM (GMT-6)


harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/19/2009 6:54 PM (GMT -7)   
Thank you Hep93 for your input, it is greatly appreciated.
I talked to my mom a little while ago, and SSD turned my brother down today, they said he did not have enough money in it.  Is SSD the same as SSI?  My mom (it is just my mom and my brother) said they were going to go back to Medicaid on Monday. Should she just skip Medicaid and get a lawyer or still go to Medicaid?  I am trying to help minimize her running around.  They live in a small town  and the nearest hospital is about 1/2 hour away, so there is alot of driving, and I know this is taking a toll on her, and my brother. 
I know my brother saw a specialist about 2 hours away, it is where my dad is at.  I should contact my dad and find out what I can from him.  We may have to move my brother to another family members home so he is closer to medical care.  The Soy protein information was another post I had read on here, but I have read so many I don't remember which one it was.  One more thing, though I don't want to think this far, should it come down to Hospice, how does one find out where they are?  or what the requirements are?  I had someone tell me in church last night that if they have like 3 months or less (terminal) they will admit them.  Is this true?  And does Hospice have a fund to help pay for it?  My mom said my brother had a bad day today and was in pain, been in bed most of the day, and also she said there was one point awhile ago that he did shows signs of Jaundice, but cannot really see it now. 
Thank you so much for your reply.  I will get on it right away trying to get some information from my dad concerning the Dr he saw.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/19/2009 8:23 PM (GMT -7)   

SSI and SSD are different.  Reread what I said about them in the above post.  I explained the difference.  But again:  SSI is for people who don't have enough money put into regular Social Security Disability.  Due to your brother's age, and the fact that he was self-employed, this is understandable.  Therefore, he needs to apply for SSI (Supplemental Security Income.)  If approved, he would receive a set amount each month (around $600), whereas with SSD it is based on income over the years worked and would be the same amount that one would receive at full retirement (I got this at age 62, as I had worked since age 16.)  Medicaid rules can vary from state to state, but generally they will only give Medicaid to someone who has been found to be disabled by SS or who has a child under the age of 18 at home.  If he is approved for SSI, he will automatically receive Medicaid.  Therefore, I would have him apply for SSI first.  Generally, when one applies for SSD, they automatically also see if the person qualifies for SSI.  Find out if this was done first, before sending your parents to the SS or Medicaid office.  Just have them call SS and state that he didn't qualify for SSD as he didn't have enough money in it, but ask if he has been considered for SSI and Medicaid.  So much can be done over the phone or over the Internet.  He doesn't need to get a lawyer until SSI turns him down.

As for Hospice, they never turn down anybody due to inability to pay.  They provide services to all who have 6 mos. or less to live.  The doctor would have to refer him.  Once he's accepted as a hospice patient, no treatment can be given...just pain meds.  Hospice serves patients and their families in the home, but some larger cities also have resident sites for people without family nearby.  Look in the phone book or the Internet for hospice services near your brother.  I think it is probably too soon at this point to be applying for this, though.

I hope this info has been of help to you.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/19/2009 9:33 PM (GMT -7)   
Thank you so much.  This information will help very much.  I emailed my dad because sometimes he cannot hear so well on the phone, and am awaiting a reply.  My mom will be very grateful also, she sounds tired and any information will help her.  Just being more informed on what is happening helps to ease the mind.  Abundant blessings to you and thank you again!

moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 9/20/2009 4:10 AM (GMT -7)   
Dear Harp, If you apply for ssd and he has not paid in enough ,you can qualify for supplemental security income which would automatically make him eligable for medicaid. If you have a problem with getting ssi get in touch with your congressman and explain the situation. They were a tremendous help to my husband and I. As far as hospice goes.They look at 6 months or less.But if you make that choice,there will be no more treatment just pain meds. Hang in there.It sounds like the family is really rallying together and if that is the case you will get through this. As far as the transplant.His meld score has to be 15 or more to even get on the list. It is a long process with 6 months of alcohol and drug treatment and scores of tests.That is mandatory if you have medicaid. Unfortunatly my husband didnt make it that far but not for lack of trying. I willl be praying for you and your family. Mimi

moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 9/20/2009 4:10 AM (GMT -7)   
Dear Harp, If you apply for ssd and he has not paid in enough ,you can qualify for supplemental security income which would automatically make him eligable for medicaid. If you have a problem with getting ssi get in touch with your congressman and explain the situation. They were a tremendous help to my husband and I. As far as hospice goes.They look at 6 months or less.But if you make that choice,there will be no more treatment just pain meds. Hang in there.It sounds like the family is really rallying together and if that is the case you will get through this. As far as the transplant.His meld score has to be 15 or more to even get on the list. It is a long process with 6 months of alcohol and drug treatment and scores of tests.That is mandatory if you have medicaid. Unfortunatly my husband didnt make it that far but not for lack of trying. I willl be praying for you and your family. Mimi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/20/2009 11:53 AM (GMT -7)   

Rick, thanks for posting to Harp with your experience with the TIPS!  I am coming along in the healing process following surgery, but impatient to progress to a cane and to walk more.  I will see my ortho surgeon on Wed. and hope to be promoted to a cane at that time.  I seem to be sleeping more than usual, but I guess my body needs it.  Thanks for asking.  Take care!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/20/2009 3:54 PM (GMT -7)   
Mimi, Rick, and Connie,
Thank you so much for sharing with me.  I called my mom this morning and passed the news along.  She seems to feel the same ease that I did just being able to make sense of everthing to be done.  It helps having information, but knowing how to prioritize and steps to follow really helps in keeping things in perspective and not being so frustrating and confusing.  Also, sharing what you have done and been through helps give some peace of mind and added hope.  I'll keep you informed.
God bless,  it is a beautiful sunny day outside, a little more relaxed today.
Thank you again, this site is a blessing, my sister says she might join also.

harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/20/2009 4:45 PM (GMT -7)   
Rick,
My sister and I are talking over Skype right now and are wondering 1) is there anything that is comparable to AA that my brother could do, he is very weak right now and we don't know if he could stay upright for that long of a time.  2) What was your MELD score, and do you know the percentage of viable liver you had left.
My dad wrote back, the specialist my brother saw out of town, that suggested the TIPS was a Gastroenterologist.  We are trying to see if there is a Hepatologist up by where he lives.  I don't know if the Dr.s he has seen even know a MELD score or the percentage of Liver my brother has left.  Thank you for your time and input.
Blessings,

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/20/2009 6:35 PM (GMT -7)   

Harp, I will say that your brother needs to see a hepatologist.  A GI doc just isn't that knowledgeable about severe liver disease.  Also, there is a new member here whose husband is having AA people come to the house as he is too weak to attend meetings.  As long as it is documented with some kind of note, that should be okay.  AA members do make 12-step calls, so if they can find a few people to volunteer to have a home meeting with him a couple of times a week, that might be acceptable. 

I'll leave Rick to answer your other questions.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/20/2009 6:59 PM (GMT -7)   

Connie,i hpoe you get promoted to a cane,and if you lived by me I'd take you for a walk and it would give me the excuse to walk. Don't get me wrong I'm on my feet all day but a nice stroll would probably do the my body  an mind good.

Good luck and take care,

DeeDee


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/21/2009 2:41 PM (GMT -7)   

DeeDee, thanks for your kind words.  The day I take a leisurely walk just to be walking, I'll really be doing something.  From past experience, that takes me nearly a year.  At first, I will be walking around the apt., and then at the stores and doctor appts., just things that are necessary.  Building stamina is the hardest part.

As Rick mentioned, if there is a local GI who will work with a hepatologist or the transplant center, that would be fine.  It just seldom works out that way.  Your brother or a family member needs to be very proactive about his care, gathering medical records and making sure that information is transmitted properly between the parties involved.  Don't just assume that the doctors will handle it.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/21/2009 3:32 PM (GMT -7)   
Harp,
 
I want to welcome you to the forum and let you know that you are surrounded by knowledgable, compassionate people here. My husband has not had TIPS or anything, but I can tell you that he is on SSI. It will vary from state to state regarding the qualifications, etc. However, I can tell you that with SSI, your brother will automatically get Medicaid, which will cover just about all of his expenses. We were turned down initially, but we had a social worker at the hospital clinic we were going to that helped get the ball rolling, so to speak.
 
You brother really does need to see a hepatologist instead of a GI doctor. The hepatologist will be able to offer better treatment all the way around.
 
Until the SSI, etc kicks in, you may want to ask the hospital about their charity programs, as some hospitals have programs out there to offset the cost for uninsured.
 
With regard to AA, how long has it been since your brother stopped drinking?? My husband is an alcoholic, and stopped drinking I am thinking 6 months or more before we went to our transplant evaluation. The transplant team has never asked us for documentation from him attending AA meetings, although he does attend and he was very open with the team about that. I do believe that every 3 months when he has his bloodwork, they also do drug and alcohol screening, just as a general rule. I have also heard of other members that have documented counseling sessions, so I am sure it would vary from Transplant hospital to Transplant hospital.
 
I think your brother is truly blessed to be surrounded by such a loving family and it is definitely what he needs. He will need someone to go with him to all the doctor appointments, and something I did was put a binder together and journaled everything from appointment to appointment.
 
With regard to the SSI, definitely re-apply, file an appeal, and get an attorney if you need to. It is standard procedure for SS to turn everyone down the first time....frustrating, I know, but that's what they do.
 
Prayers to your family.....you all hang in there.....
 
Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/21/2009 6:38 PM (GMT -7)   

Mer, I had to go back to Harp's original post, but she stated that her brother was diagnosed with cirrhosis about 2 1/2 months ago and stopped drinking that day.  So it's not enough sobriety time for a transplant team to not require AA or counseling.  I had been sober for 7 years in AA when diagnosed with hep C in '93 and now have 23 years of sobriety, so of course it has never been an issue in my case.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/22/2009 4:39 PM (GMT -7)   
Thanks, Connie, for clarifying......I missed that part. Yes, they would definitely want documented attendance this early on.

Harp, do see about the possiblity of a social worker helping you through the red tape on the SSI issue.......ultimately, that's what helped us get through it.

God Bless,

Mer

harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/22/2009 8:02 PM (GMT -7)   
Hello everyone, thank you very, very, much for your support and postings.  I have been reading them, but had a B-day for my 19 year old yesterday, and watching my infant, cute as a button grand son.  Also trying to keep with follow up on my 19 year old who is in recovery from early Stage I Lymphoma and trying to have her find out if any of the inital Dr's who read her blood tests and CT scans was an Oncologist.  So far several courses of anitbiotics seem to be working.
Now, concerning my brother, I have been passing information to my mom and still checking information on the internet.  My brother is up in the Northwest and the closest Hepatologist to him is 8 to 9 hours away, either Salt Lake City, or Seattle Washington.  He likes the Gastroenterologist that is 2 hours (less if there wasnt all the road construction) away where my dad is at.  My dad had said also that  one of the hospitals where he (my dad) is at; the radiologist there is able to place a TIPS shunt.  My mom is going to see if my dad will talk to his GI Dr. and see if he will work with a Hepatologist concerning my brother.  My brother and mom are still trying to get this thing going with SSI.  I am not sure why, but my brother brought the SSD denial back to Medicaid; I am thinking because Medicaid told them if he was denied they may be able to help him then.  I am not sure if this is wasting time or not.  My mom says the woman at Medicaid seems to be one of the people interested in helping my brother on this.  She also said there are some medical bills coming in and my dad told her to hold off on paying anything yet, to see if Medicaid kicks in.  To my knowledge they start paying from the time you are approved.  I hope I am wrong.  My mom told me today the last 2 days my brother is looking pretty bad.  I think I am sensing an air of panic here.  We don't even have a MELD score on him, or what % of liver he has left, only that his liver is shot.  He is on the Lactulose, and I think the bulk of his diet is Ensure, he is having a hard time eating more solid foods, and very tired.  I think after I get off work tomorrow, the SS office will still be open here, and I am going to go down and pick up applications and appeal applications, and ask every question I can think of ( I live across the border in another state).  Then either Thursday or Friday I am going to head up to my moms (about 3 hrs) and try to help my brother and her sort through this stuff, and possibly stop at the Medical facility by them that has been doing the Paracentesis and check into a social worker there that can assist in this process (and possibly and charity funds).  This will be the first time I have seen my brother since he was DX.  I know I am going to have to prepare myself, due to the nature of this disease and his current condition.  I pray for strength, wisdom, patience, faith, and the right words to say. (Hopefully we can bring some gentle uplifting laughter into the home, they say it is the best medicine)
I will keep you posted, and again thank you for your help, I am soaking this information up like a sponge.   My mom is very grateful also (she does not do computers)
May our Good Lord keep his hand upon you and your loved ones.  Harp :-) 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/23/2009 2:43 PM (GMT -7)   

Harp, I just wanted to say that I hope your daughter's lymphoma is put into remission quickly.  You certainly have a lot to deal with!  You must be a very strong person.  I know you are a good sister to be researching info and trying to help with your brother at a distance, which isn't easy.  I know that Medicare kicks in 2 years from the time one first applied, if approved, and if the recipient is at least 65.  Medicaid might possibly pay some things retroactively...just not sure about that.  By all means, find out about charity help at the medical facility.  With Mayo, I had to fill out forms and submit proof of income, as well as 6 months of bank statements.  It takes them a few months to approve or disapprove.  Unfortunately, they did not approve me for '09, although my circumstances have not changed.  I think they decided 3 years of subsidy was enough.  But I'll try again in Jan.

I hope you will get a get a better sense of what is going on when you visit your parents and brother this weekend.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/23/2009 11:19 PM (GMT -7)   
Thank you Connie for the kind words.  I spoke with my brother today, he is anxiously awaiting my arrival.  We are going to go to a few places and then go through paperwork and make some phone calls.  I was able to go to SS today in my town, and the woman there was very helpful. She told me to tell (or my brother) to tell them that he had a terminal liver disease and she has seen them expedite applications in one or two days.  Also, to ask them about provisional benefits that could help him out until things are finalized.  We will try to get together medical records where he is at, then my other sister who will be up there with us will take them back with her and pick up the other medical records from the specialist and take them to the local SS office in her town.  There is no local office where my brother lives.  We are just happy to get things moving so my brother can get the medical attention that he needs. We pray for approvals and quick responses.  I'll keep you posted.  Well, off to bed, have a big day tomorrow.   Again, thank you very much. 
Harp.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/24/2009 1:35 PM (GMT -7)   

Harp!  I am impressed with all that you and your sister are doing on your brother's behalf.  It's true that the squeeky wheel gets the attention, so continue to be very proactive in helping your brother.

Safe travels!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/25/2009 2:43 PM (GMT -7)   
Hello to all,
Well all of us sisters are here at my mom's today.  My brother is actually glad to have some people here, his support group.  First, Rick, my brother would like to know what your MELD score was before you got the TIPS.  We finally received a call from the Dr. who does the drainings here and he said as of last week his MELD is 19.  I went by Wikepedia interpretation for that score but it is for a hospitalized individual and the mortality for a 3 month period was 27% and then a MELD of 20 jumped to 76%.  Also, how long after you had the TIPS did it take to notice a difference, (weight gain, etc.) and how much did you have to have drained in the 6 months.  My brother now has a belly hernia from the fluid starting to build faster.
My brother and I got the Medicaid forms filled out yesterday and brought them down to their office.  We are not sure what is going to happen, the woman was helpful, but she did tell us her husband had been on the Lung Transplant waiting list and he was denied Medicaid.  I don't know what their personal circumstances were though.  I then spoke with a SS attorney, and he said to go online and apply for SSI, and if turned down, appeal that decision, but it could take up to 3 months to get another reply; if denied a second time that is when he would step in.  So, we are getting ready to fill out the application online, and trying to get things expedited if possible.  We've been told to word things to focus on the severity of this.  At this point my brother is also taking Hydrocodone, his pain has accelerated, I am guessing from the pressure of the Ascites.  I don't think he is going to beable to wait two weeks anymore to get the abdominal draining.  O.K. time to get to the SSI site.  Thank you all so much for your concern and help, it is tremendously appreciated. Blessings to you all,      Harp.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/25/2009 3:45 PM (GMT -7)   

Glad you got there okay, Harp.  I think the attorney gave you good advice.  Does your brother live alone with no income?  If so, you could also apply for food stamps for him online.  Google his state and food stamps to get an online address.  Even if he lives with someone, if the income is low, he may be able to get something.  I'm a firm believer in applying for anything one might be entitled to when ill with a life threatening or chronic illness.

I'm sure that Rick will answer your post as soon as he sees it.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/25/2009 7:17 PM (GMT -7)   

Rick, yes, correct word, spelled stent.  smilewinkgrin

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 9/25/2009 8:01 PM (GMT -7)   
Thank you Rick for all the info.  My brother is resting now (after a good nutritious meal my sisters cooked).  He said if he could that would be great to have your email in case he had any specifics. (my other sister is giving him an older, newer computer of theirs so he can use the computer more often) I just don't know how to get to your profile to get it. 
We read through SSA website today, tomorrow we apply online for SSD first, then he has to call in to do the SSI, and will check back with Medicaid next week to see if any word on that application.  My brother seems more hopeful, especially with the input of kind, caring people on this forum, and with the support of our family; I tell my family and friends how much all of you have helped.  Thank you, Thank you, Thank you.  Harp

harpazomeup
Regular Member


Date Joined Sep 2009
Total Posts : 85
   Posted 10/3/2009 1:16 PM (GMT -7)   
Thanks for the post Rick, guess my last post got wiped off when the server went down.  I will try to recap and add any updates now.
I am back home now, we hada very productive four days.  Us four sisters helped out with cleaning, cooking, babysitting (my brother wanted to meet my new grandson) family time and much information sharing, as well as getting applications filled out.  With all the information it has given much hope, and proactivity that we don't have to just sit there and watch my brother deteriorate.  Even my brothers GP that has been doing the drainings has been more proactive.  He went back three months and told my brother at the beginnning of his visits he was at MELD of 24 and now he is at a MELD of 19.  All we could say was "Praise the Lord!". At least it went down.  His Bilirubin and Ammonia levels are good, but his Albumin has not shown improvement.  He got 20+ lbs of fluid taken out two days ago, and  still has some drainage of fluid and blood coming out of the puncture site.  His cognitive abilities still seem to be pretty good, though he gets tired easily.  I spent much time on the computer with my brother reading research to him, so he understands better now what is going on.  He is only two questions from getting the SSD application sent in online. (He had to figure quarterly taxes), and Medicaid application is in.  I was told from a financial advocate that on SSD applications if the individual that is applying is terminally ill, to put in the comments section at the end of the application "This person is a Teri case", and it usually gets the application processed more quickly.  They will probably request a letter from the MD stating they have a terminal conditon.  We have also found three sources through hospitals and speaking with patient advocates at hospitals of charity programs.  Because my brother trys to keep costs down he is only going in every 1 1/2 to 2 weeks for the Paracentesis and it is taking its toll on him, we have two individuals (God bless them) that are going to pay for my brother to get the TIPS (stent).  We are getting an application sent in to help pay for the Dr bill on a sliding fee scale.  My brother now knows the risks and benefits and still wants to go through with it.  My dad has checked with a SS attorney to find out about the financial end so it will hopefully not interfere with my brother qualifying for benefits from other sources.  We are trying to get things going as soon as we can, because we don't know how long it could take for other financial benefits to be approved.  Sounds like months.  My brother just had a CT scan done earlier this week and they will send it the to hospital where my dad is at, and the radiologist there will place the TIPS.  The GI doctor my dad knows will be my brothers primary doctor, because there are no Hepatologist's anywhere around him.  From what I hear this GI is very experienced, and has been in practice for a long time, his title on his card says, "Gastroenterologist / Liver Diseases",  whether he will work with a Hepatologist over the phone I do not know yet.  I also have a kit of well written legal forms, such as a Living Will, Springing Durable Power of Attorney, Healthcare Durable Power of attorney, etc., that my brother has signed just in case, though our hopes are high that he will do well with the TIPS surgery, and prayerfully thereafter.  Connie, I had written in one of my first posts about an individuals post on here talking about how they did well with Soy Protein.  My sister followed up on this and found a Liver Disease site that said that vegetable  proteins when broken down give off less Ammonia byproduct than does animal proteins.  We are going to talk to my brother's MD about this because he was also drinking a Whey protein that he used to drink when he did bodybuilding, but maybe he will change that to Soy.  I'll let you know what we find out.  Rick thanks again for address.  I know I am the only one that has been writing on this post concerning my brother, but also on behalf of my family we are all very grateful for your support and input.  You helped give us a place to start, and that ember has sparked into a flame.  When things get rough, I just remember that no matter what, my God is always a good God.       Blessings to you and your families.             Harp.
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