dealing with Cirrhosis

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kat1635
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Date Joined Feb 2009
Total Posts : 15
   Posted 2/9/2009 6:14 PM (GMT -7)   
Hi my husband has Cirrhosis of the liver and Hemochromtosis, varices, a mass on his agrenal gland and kidney stone (that is to big to pass) I am new to this chat. He also has Chronic Hep. C. We found that out first last April, then everything else happen. He is in pain and the gastro doc  said that the pain in his left side is from the Kidney but the Kidney Doc said no it is not moving so it is not hurting him. I took my husband to the dr last March actually the day after my birthday (had to tell him if he didn't go I was going to tell the children) We have 6 all are grown 2 living at home going to college. He had lost big patches of hair in spots very different. It has grown back we were told that it was lack of trace minerals ( that was a big Bull) It was from the hemochromtosis. Found that out on the web. The dr was shocked to be told that he had this he told us he had no one that he see's with it. My husband don't drink. Has not in over 26 years. He is going to be 60 in May. I am really wanting to try to figure out what stage he is at with his liver he is not loosing weight but his belly looks like well it is huge. He had a Echo heart thing last week they said that his pressure was at 23.3 which they told us that is good. they took a pint of blood from him every 2 weeks for 8 weeks his iron is down but he had gotten Mascular Degeneration they had to stop treatment for the hemochromtosis due to the treatment of his eye condition (which that is better his eye sight is now 20/25 it was 20/200 before treatment. they are not and have not treated him for the Hep C. They will not do a biopsy on the agrenal gland due to he don't clot could kill him. So that could be cancer they are going to look at it again in November of this year. I really need to understand what is going on with him he is depressed and told me that he is not ready to die (which is the best thing for me to hear) I am going to be 48 and the mother of 6 children & going to be 8 grandchildren one is due next week #8 I will have 4 boys and 4 girls then. back to my hubby sorry it makes me not think when I think of the kids. I work 3 shift at a hospital but try not to think about all this really I wish that I would wake up one morning and be told he is in great health everything would be wonderful again I went back to work because we needed the insurance I work the hours that I do so that he is sleeping while I am gone. I jsut want to try t figure out his stage of his liver he is having problems with bowel movements (which he never had that before) his feet are starting to swell a little and he did have the itching but the high dollar cream took care of that he has a problem with sleeping also takes a sleeping pill they had him on a blood pressure med and a Vit K but took him off both of those now can someone please fill me in on what is going on I am so tired of worring all the time. thank you

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/9/2009 7:18 PM (GMT -7)   

Kat, I have brought over a couple of our educational threads.  You will find them now near the top of Page 1.  Read The Stages of Liver Disease.  That will give you a better idea of where your husband is at.

Given his other problems, I don't know if he would be a candidate for hep C treatment.  Is he seeing a hepatologist?  You need to ask what they plan to do for the hep C.

Ascites, or fluid in the abdomen from liver disease, is causing the bloating and slight swelling in the feet/ankles.

He's depressed because he feels lousy.  Hep C causes a person to be very fatigued all the time, regardless of how much one sleeps.

The best thing you can do for both your husband and yourself is to read the threads here and learn as much as you can.  The American Liver Foundation (americanliverfoundation.org) is also a reliable source of information. 

Has he filed for Social Security Disability yet?  I suggest he do so, or you can do it for him.  It sometimes takes awhile to get it, but when approved they will pay from the time he first applied.  Depending on the family's financial status, he may be able to get Medicaid.  If approved for SSD, he would get Medicare 2 yrs. after when he applied for the disability.  If he is approved for SSI, he would get Medicaid immediately, but also may be able to get Medicaid now.  SSD is for people who have enough work credits, while SSI is for those who don't.

I know it's easier said than done, but try not to worry.  That's just a waste of energy and is nonproductive.

Hugs,

Connie



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


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/10/2009 3:20 AM (GMT -7)   
Kat
Wanted to add my welcome to the forum. Connie is right that knowledge is power when dealing with medical professionals. Please learn all you can to arm yourself with questions for your doctors.
I am sorry that your family is having to deal with this disease.

Again welcome

Lucy

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/10/2009 6:05 AM (GMT -7)   

Kat,

 

Welcome to the forum.  I'm sorry you have to deal with so much.  Your husband's case is very complicated and I'm certain the doctors are having a tough time balancing treatment options.  You really do need to learn all you can about both his Hep C and the hemochromtosis. 

 

The hemochromtosis (excess buildup of iron in the body) really disturbs me because you mentioned that you have 6 children and 8 grandchildren.  They should be tested for hemochromtosis because it is more often hereditary.  It is often goes undiagnosed until organ damage occurs.  This takes decades of iron build up and problems usually develop in men between the ages of 40-60, and in women age 50-65.  The simple screening tests are Tranferrin Saturation which measures the total iron binding capacity and Serum ferritin which measures the long term storage protein for iron.  Organ damage can be prevented if hemochromtosis is diagnosed early.  Iron levels can be controlled by regular blood draws, avoiding iron supplements and high doses of vitamin C.

 

I’m sorry to say that you have a long road ahead of you in helping your husband through this crisis.  You will find a great deal of insight and support in this forum. 

 

My thoughts and prayers are with you and your family.

 

God bless.

 

Penny


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/10/2009 6:44 AM (GMT -7)   
They told us that my husband doesn't have the gene for the hemochromtosis he had the test but our oldest child is 28 and they will not test them until they are 30 they told us We went to the dr and he is not going to have my hubby come back until June he has genotype 1A Hep C which doesn't take to treatment I have some questions I have been reading about an odor? I noticed that my hubby has a body odor (mostly on the bedding) He has always used mouth wash everyday so I don't notice the breath smell why the smell? What is it coming from? I hate it when I get up he will get my pillow and hold it and then it has a smell to it just trying to figure out why? Also they said they may try treating him in June for the Hep C he has never had treatment but it sounds like it is going to make him really sick I am affraid that his tron level will be back up by June it is good now but he hurts so badly in his stomach and left side no one can tell him why he is hurting either I have taken him to every dr that I can and had every test done on him no one can tell us why he is hurting

kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/10/2009 7:58 AM (GMT -7)   
the doc office just called and said that my hubby is in Child stage A early stage of the cirrhosis and is handling it well so far that is good for us now I thought that it would be that but wanted to hear it from the doc I guess which means we have a lot to decide on what treatment if any they will give him thank you to everyone on here It looks like your going to be stuck with me now We don't want to go to the SSI people my hubby wants to try to work but has very hard days as we own our bussiness an want to keep it as long as possible I work to keep insurance on us

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/10/2009 8:58 AM (GMT -7)   
Kat,

There are other reasons for iron overload such as diet overload (too much red meat) or multiple transfusions. Other rare hereditary conditions can cause the build-up; thalassemia, porphria cutaneous tarda, etc. Chronic liver disease, such as Hep C, can cause an iron build-up, but this is usually termed hemosiderosis not hemochromatosis.

The odor your husband is emitting is associated with a buildup of toxins in his bloodstream (usually a sweet musty odor). His liver is damaged by the cirrhosis and is no longer efficient. The toxic buildup is called hepatic encephalopathy. This is treated with routine doses of Lactulose.

I'm not a doctor, but my best advice to you is to take notes at all his doctors visits and conduct your own research. No one knows your husband and his history better than you. Once you gain an understanding of each of his medical conditions, you are better prepared to ask questions and assist the doctors in making an acurate diagnosis. For example, you might be aware of a symptom that you didn't think was worth reporting to a doctor. yet it may be just the information they need to narrow down a diagnosis.

There are many members of this forum who have experience with Hep C that can readily discuss the associated symptoms. The chronic pain your husband is experiencing in his stomach and left side could be caused by any number of conditions. I'm sorry the doctors haven't narrowed it down yet. Don't give up.

I gotta run. I hope this helps you some. Take care and God bless.

Penny

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/10/2009 1:16 PM (GMT -7)   
I have chronic left-sided pain, too, just below the ribs, that has never been diagnosed.  Nothing shows up on CT or MRI and the doctors have no idea what it is.  This has been going on since about 2001.  I just live with it.  rolleyes
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/10/2009 1:54 PM (GMT -7)   
that is the same area that he has it also sometimes it hurts him so badly he can't even sit let alone walk or stand

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/10/2009 9:00 PM (GMT -7)   
Kat & Connie.
 
I did some digging around on the Internet.  I was amazed at how many individuals have undiagnosed, left side pain.  It was the same story everywhere I looked.  Test after test and the doctors have no answers.  Then I came across the following in a health forum.  Possible solution? 
 
Pain Under Left Ribcage
I went to the doctor a couple of years ago due to pain under my left ribcage. It was a sharp pain and would buckle me over.  The pain would come and go.  It eventually came more often.  The doctor said there is a major muscle just below your left ribcage and suspected the pain was due to a lack of magnesium.  Calcium and magnesium allow your muscles to expand and contract.  I started taking Calmag immediately (you need twice as much calcium as magnesium and need to take it together).  Within 24 hours the pains stopped.  I take Calmag to this day but if I forget and my diet isn't all that great, the pain comes back.
 
It's so simple, but could the 2xCalcium/1xMagnesium supplement actually resolve the left side pain?  As you know, an ailing liver cannot properly store the vitamins and minerals a body needs.  If either of you decide to try this cheap fix and the pain goes away, I would love to know . . . just to satisfy my own curiousity.
 
Good luck.
 
Penny

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/10/2009 9:57 PM (GMT -7)   

Penny, thanks for the info.  I had also researched the web at one time and saw many others complaining of this same undiagnosed pain.  My blood work never shows a low magnesium, so I don't know if taking it would do any good.  The last doctor I saw said it is probably adhesions.  The thing is, I have had this pain before I ever had any type of abdominal surgery.  The Calmag might be worth a try...depends on cost, as I'm trying to keep expenses down these days.

For Kat's husband, I've had the thought that it could possibly be pancreatitis.



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


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/11/2009 4:02 AM (GMT -7)   
I took hubby to the dr and have everything checked out he has had a colon check they went down his throat and checked out his stomach I have evern took him to a back cracker he has had blood work and went to an Urogoly not sure of the spelling (kidney, prostate etc dr) his testicles are swollen also they are hurting him he has had a CT & 2 MRI's I have had everything checked out so we will try the calmag I have given him so many vitiamins and Trace Mineral and Milk Tissule and even did a colon cleaning on him thought that may have been the problem not it thank you for looking that up for me I just got home from work going to get me some sleep

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/11/2009 4:26 AM (GMT -7)   
It just dawned on me that when I took Harvey to clinic on Monday, they added magnesium to his list of meds. They had him on OsCal+D (500mg 2xDay=1000mg) when he left the hospital. They just added 500mg of magnesium.

As far as cost, I don't see where you would have to get "CalMag". The formula just suggests you take twice as much Calcium as Magnesium and that you take them both at the same time.

Let me know how it goes.

Penny

kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/11/2009 10:59 AM (GMT -7)   
going to buy it today and start him on it all the money we have wasted trying to find out the reason for his pain then I got on a chat board and maybe get the answer this is great you so are all of you Thank you so very much will love to see him sitting on the sofa and not moving around all the time because he is in pain would be the greatest Penny what stage is Harvey in with his liver if you don't mind me answering?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/11/2009 1:58 PM (GMT -7)   
Thanks for the additional info, Penny.  I have trouble taking those humongous calcium tabs, and the chews are too expensive.  However, I eat a lot of dairy products and my calcium is always just above the low end of normal.  How big are the Calmag tabs? 
 
Kat, just in case Penny doesn't see your post (she's pretty busy these days, as her hubby just got home from the hospital), her husband just had a liver transplant...so he is on the way to being a new person!  :-)

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


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/11/2009 4:33 PM (GMT -7)   
that is great I am hoping that they will get the cure for the hep c and Steve can get treated and get better we just found out his stage and it has been almost a year they finally just told us I have so many questions and never enough time as I just got home and have to get dinner so that I can go to work tonight as I work 3 shift to keep insurance on my hubby I couldn't find the calmag but got just the regular mag and cal in each bottle to take that way

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/11/2009 5:28 PM (GMT -7)   
Kat, I don't know if you saw Shelly's earlier post on magnesium and other electrolytes, but she is right that nothing should be given to him until his doctor okays it.  It could mess up his electrolyte balance and cause all kinds of problems.  I wasn't even thinking of that myself, when it was suggested.  When one suffers, you just want to find some help.  Unfortunately, I think it will be quite awhile before we have have a real cure or a vaccine against C, but there is treatment available so I hope he will seriously look into it.

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


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/11/2009 7:26 PM (GMT -7)   
I did call his dr today he said to try it if no different in 48 hours to stop it he will go in for blood work in 3 weeks then I knew to call the dr first thank you very much and thank you to everyone for your support it is so good to have people to listen to me the kids don't want to talk about their father's health problems it depresses them like it don't us
Sorry got to get ready for work talk to you all in the AM I hope have a Blessed Evening :)

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/15/2009 5:47 PM (GMT -7)   
Sorry, I've been very busy trying to get back into the swing of things. Between working, packing wounds, and keeping up with meds and hospital bills, I don't have as much time to spend on the Internet.

Connie - I looked up the CalMag and it can be purchased in several forms; gelcaps, powder, and fizz. It is primarily marketed for relaxation and is supposed to help calm people before bed.

Kat - My husband had a rare liver disease, Primary Sclerosing Cholangis (PSC), and was successfully transplanted on January 21, 2009.

I hope this simple remedy works for you.

God Bless You.

Penny

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/15/2009 5:58 PM (GMT -7)   

Kat, thanks for letting us know that your doctor okayed trying this.  And Penny, thanks for the info.  Much appreciated.

Kat, you have so much on your shoulders.  Please try to find a few minutes for yourself each day, and get enough rest.


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


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 2/15/2009 9:30 PM (GMT -7)   
Well I am sad to say this didn't work for my husband so he had to stop taking the pills Also we finally got our 8th grandchild today she was born at 5 pm and weight 7 pounds and 14 ozs.got to go take care need to get me some sleep the baby will be here in the morning and I have to take steven to the eye dr tomorrow for his eye problem
god bless each one of you

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/16/2009 7:40 AM (GMT -7)   
Hello Kat and welcome to HealingWell, So sorry that your husband is having so much pain. The only pain my hubby had was from his gallbladder occasionally........he developed gallstones. They wouldn't do surgery as they said that there was a possibility that he would bleed to death during it. So he had to live with it.

That muscle thing that Penny found seems interesting.........who would have thunk? I get a pain occasionally on my left side.....heck I am going to ask my MD about it.............

Take care...........thoughts and prayers......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 5/3/2009 7:44 PM (GMT -7)   
Hi I just wanted to do an update on my husband well he had surgery on April 8 for an impacked kidney stone finally over that Thank God then he got another bleed in his eye so he has started taking the shots in his eye again and he is getting ready to take treatment in a clinical trial for the Hep C thank god for that hopefully he passes all the testing to get him the rest of the way in the program as we can't afford the treatment and the place that has taken him in is in another state which means that we are going to have to travel a lot for the next year but it will help him then so be it got to go love to all and take care and in good health

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/3/2009 8:41 PM (GMT -7)   

Kat, do they think the pain he was having was from that kidney stone?

Also, I'd be very interested in how he does on the clinical trial.  Do you know the name of the drug or drugs they will be using?

Please keep us updated whenever you can!

Thanks!

Connie


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


kat1635
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 5/3/2009 9:01 PM (GMT -7)   
yes they said that the pain was from the stone it was the size of A
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