Treatment Anxiety

My husband was diagnosed for Hep C 1a about 2 and a half years ago...they feel based on his history and memory of events that he may have been exposed in the early 80's...he is 57 now, so that means approx 30 years.

He also found out during the geno-typing that his internist did that he has a hereditary genetic metabolic disorder that causes him to store excess iron in his body. He has been doing so since birth. All this iron built up, first it deposits on liver, causing much damage to organs, in particular the liver...so it is very likely that the damage to liver could have made his immune system weak due to underlying systemic condition that he was not able to fight off the Hep C virus. But the thing is we don't know when he got the Hep C. It is only a guess, due to surgery's, injuries, who knows...he has it.

He has many other complications, also due to iron overload, like pancreatic nodules and inflammation, gallbladder disease, joint pain and very fatigued, and has found out from recent liver biopsy that he has stage 2 peri-portal fibrosis with grade 3 inflammation...I can't really understand the way they wrote the report...I think that is what it says, but there's more to it than that, just can't understand it.

He is very nervous about treatment...has heard many bad things, and is considering not doing it. But that makes me very scared. His stomach is swelling, he sleeps a lot when he's not working, painful joints (iron has damaged them as well) he has a rare eye condition, from having damage to pancreas from the iron that causes diabetes, and now he is also going blind progressively, no treatment for that...

I am trying to be supportive, finding out as much as I can about how all his afflictions affect the other. I know that in order for the best outcome or shot at becoming UND or SVR, he has had to get the iron down, he is almost there, by weekly phlebotomy's, because iron and chemo do not get along, so that was first order of business. 1a is the most resistant to treatment as it is without all the other stuff on top of it.

Now that he is almost at the point where we can get him started, he is starting to even more so talk about just not doing it...I don't know how to encourage him without pushing too hard...

Guess I'm kinda asking for some advice or get some feedback on some things I can help him to think about other than the side effects, tips and tricks of the treatment phase, and what to expect...we also have a 9 and a 6 year old that need their Dad, and I know it'll be tough on them seeing him not well if that's the case...the last two years have been bad enough, with his energy levels and stamina being so low. He tries hard, but what can I do for him?

Thanks...C

[orphanedhawk]

The best advice I can think to give you is to recommend your husband see an experienced hepatologist.
The liver specialist is the best person to determine the condition of your husband's liver.
After you know that, you will have a better idea about whether treatment is a good option or not.

You need to see someone who can clearly explain the results of his tests to the both of you. There is no excuse for a doctor to leave the patient in the dark.

Good luck.

[panda2526]

This has been a story of missed and misdiagnosis from the beginning...

It was over 10 years of drs and tests and being told that there was nothing wrong...the insurance company was the one that alerted anyone about the elevated liver enzymes...the dr never really pursued anything even then, and just said quit having anything to drink for 8 weeks and see how that fixes your enzymes.

8 weeks later...still elevated.

But strange thing is, that over two years BEFORE any of this with the liver enzymes he had gone to the dr for many problems, including the fatigue, joint pain, bad body pain, and his eyesight. A specialist diagnosed the eye condition first.

It was the second set of testing for the liver enzymes when he went in to get the results that the fill-in dr told him he still had elevated liver enzymes and by the way, you also have Hep C! It had been on his file from two years previous, and no one had told him! It showed there that it had come up in other previous tests he had been in for due to so many symptoms of things.

Anyway, we have dealt with all the repurcussions since then...the internist genotyped him and has been good about doing tests, etc. but he lives 7 hours away, and we have not seen him since the biopsy. He told us about the genetic iron disorder, told him he had to get the iron out before treatment, and then since then it has been the GP "helping" us, but that has been frustrating. That's why I have been reading as much as I can about the problems of all he has, and how it all affects prognosis and treatment response, for good or for bad.

Here is what the biopsy report says:

The prominent finding is that of chronic inflammatory infiltrate within most of the portal tracts. There is moderate expansion mainly by lymphocytes. There is moderate activity (grade 3) with interface inflammation. Mild lobular activity with a few degenerating hepatocytes  with inflammatory cells. Steatosis involving less than 5% of the hepatocytes. No abnormal staining material on the PAS, PASD. Peri-portal fibrosis (Stage 2) noted with the reticulin and Masson. Iron stain shows small focus of cytoplasmic hepatocyte iron staining involving part of a lobule.

Chronic Hepatitis with moderate activity and peri-portal fibrosis. Hepatitis C with increased iron, Hemochromatosis.

End quote.

So that is the technical part. Now to figure it all out!

Anyway, thanks again for the advice, and I hope to continue to learn more as we go on. I know little yet about the Hep part as we had to focus on the iron part, and getting his other family members, kids, and myself all tested, which has revealed a whole other can of worms!!!!

Cheerz...C

[HectorSF]

I agree with OH completely!

An internist has no training in liver disease, hepatitis C or hemochromatosis. They are a generalist. The internist should have referred your husband to when he determined your husband had hemochromatosis.  They are not qualified to treat the disease and your husband obviously has advanced hemochromatosis from the symptoms you mention. Improperly managed hemochromatosis can lead to serious chronic illness and worse.

ONLY at hepatologist is trained and experienced in caring from people with hemochromatosis, hepatitis C and liver disease.

Please get an appointment with the nearest teaching hospital where they have a liver clinic/center or a liver transplant center ASAP. Not because he needs a transplant but because they are the only doctors with the resources to diagnose, manage and treat someone with more than one liver disease with creating more problem then they solve.

Your husband has stage 2, moderate liver disease, so he should be having no symptoms because of hep C damaging his liver.

Your husband's main issues are coming from his hemochromatosis NOT his hep C. Hemochromatosis needs to be managed first. Hepatitis C is a secondary issue at this point.

Although hereditary hemochromatosis is present at birth, most people don't experience signs and symptoms until later in life when they are between the ages of 30 and 50 in men. Woman usually experience it later in life because their periods get rid of the iron rich blood.

The common symptoms are joint pain, fatigue, abdominal pain and impotence.
Joint pain in people with hemochromatosis can lead to the collection of calcium crystals in the joint spaces. These crystals can cause joint pain and, over time, joint deformity. About 44 percent of people who have symptoms at the time of diagnosis have joint pain. The joints of the hands, especially the knuckles of the second and third fingers, are most commonly affected.
About 75 percent of people who have symptoms at the time of diagnosis have weakness and lethargy.
About one-half of people who have symptoms at the time of diagnosis have diabetes.
About 30 percent of people who have symptoms at the time of diagnosis have conduction problems, which may cause symptoms of rapid or irregular heart beat. Rarely, heart disease is the first sign of hemochromatosis.
Accumulation of iron in the thyroid gland can cause hypothyroidism (poor thyroid function) in about 10 percent of people with hemochromatosis.
It can make the skin looked bronzed or tan or gray. Many patients appear to be tan the year round.

Hemochromatosis is a very serious and sometimes life-threatening illness that should be taken seriously and treated before further damage is done.

To best help your husband, yourself and your children please help your husband get the care he needs before further damage is done to his body. Hemochromatosis can lead to chronic illness and life-threatening conditions.

Best of luck to your husband and your whole family.
hector

[HectorSF]

Hereditary hemochromatosis is almost always caused by a genetic mutation that is passed from both parents to a child. Therefore, clinicians usually recommend that first-degree relatives (parents, siblings, and children) of people with hemochromatosis undergo screening. There is a 25 percent chance that a full brother or sister of a person with hereditary hemochromatosis (with two copies of the C282Y mutation) will have hemochromatosis.

The primary goal of screening is to detect hemochromatosis before there are symptoms or complications. The optimal age for screening is between 18 and 30 years; during this time, the condition can be detected, but serious tissue damage has not yet occurred. The optimal strategy for screening is still being determined, so it is important to discuss the advantages and disadvantages of screening with a healthcare provider.

h

[can-do-man]

As OH stated your husband needs to be seen by an experienced hepatologist. From your Biopsy results it looks as if your husband his getting close to stage 3. It is time he becomes serious about treating this as the more damage the harder it is to cure. Right now with the new drugs cure rates are 70% and up. also if your husband is still drinking he really needs to stop as drinking speeds up the damage really fast. He does not want to become cirrhotic....... Best to you both.

[orphanedhawk]

I was misdiagnosed as well however that is the past.
Now, we can only go forward.

Hector has explained the situation clearly.
All of us agree your husband needs to be seen by the right doctor~ a hepatologist.

If you tell us the area where you reside, we may be able to recommend someone for your husband.
Otherwise, I can suggest you do a search of hepatologists in your area,  look for Universities or hospitals that have a liver department.

[panda2526]

I have always read your responses to others with admiration...thank you so much for sharing with me. It took a while to get up the courage to ask, although I have tried, probably somewhat unsuccessfully at times, to help others at the same time...many thanks.

We have done everything possible to get the hemochromatosis under control. As soon as he found out about it he stopped drinking completely, and had bascially done so after finding out about the Hep C anyways about 2 and a half years ago.

He has weekly phlebotomy's to get the iron out...they have been fairly successful. He ended up going from high HgB and Hct and RBC's to anemic, so they had to stop his phlebs for a couple weeks to let his blood catch up. His ferritin at the time of diagnosis was 863 and TSAT% was 71%. His mother has found out she is a carrier and basrd on what his Dad died of and the genes my husband has obviously his Dad had it though no one knew. And Irish to boot!

The Celtic Curse indeed. My husband is compound heterozygous for C282Y and H63D. I am well versed in the HHC risks, symptoms and possible consequences...he was diagnosed prior with fatty liver, hemangiomas, nodules on pancreas, polyps on colon, (his Dad had part of colon removed due to cancer and his grandfather died of colon cancer) cholelithiasis, skin lesions and more.

I know that the HHC disorder complicates the Hep C treatment, already we have had to wait to get started, and he has abdominal swelling already, so we are anxious about this whole thing. But thanks again for all your advice. I had no idea about the specialists and the differences. The internist is who we were referred to go by our GP at the time as the guy who would be taking care of the Hep C, although now I think about it, he is a gastroenterologist, so how does that relate to Hep C?

I have overload of the brain. Have to get some sleep, something I've been suffering from lack of...

The thyroid issue we are going to pursue...I just found out about all that as well even with myself and it dawned on me that he needs to get checked for that too.

Good night, from snowy  Northwestern BC, Canada.

C

[HectorSF]

"The internist is who we were referred to go by our GP at the time as the guy who would be taking care of the Hep C, although now I think about it, he is a gastroenterologist, so how does that relate to Hep C? "

An internist is not a gastroenterologist or vice versa.
A gastroenterologist has completed all of the same training as an internist, (4 years undergraduate, 4 years medical school, and 3 years of residency) plus three years of fellowship training in Gastroenterology (diseases of the digestive system).

Only a specialist can help someone with metabolic liver disease. Only 1 in 300 Canadians of Northern European descent have hemochromatosis.  

You have already stated that your husband has been misdiagnosed over the last ten years. Why? Because he was not directed to the right specialist. Now your poor husband's hemochromatosis has permanently damaged many of his body systems. Unless someone advocates for your husband at gets him to a experts that know how to manage his hemochromatosis things will only go from bad to worse. I feel sorry for your children who will see their dad become progressively more disabled and in pain as they grow up. This will impact them for the rest of their lives as it already has.

We have all told you what to do and how his hepatitis C is not what should be focused on now. Even if your husband didn't have hep C the hemochromatosis would be damaging his liver. The outcomes for someone with both hemochromatosis AND hepatitis C infection is poor without expert care. His hemochromatosis needs to be managed as best it can at this point, then he can treat his hepatitis C. The damage the hemochromatosis has already been done will effect his ability to treat his hepatitis C because he has so many other medical conditions as well. But if he waits longer he will have more damage and things will only be more difficult. He is already more likely to progress to cirrhosis having both hemochromatosis and hepatitis C infection. Outcomes are even more dismal if that happens.

No individual gastroenterologist can help him at this point. Getting him to the right doctor now won't undo the damage that has been done in the past, but it will give him the best future he can have.

Please contact The Canadian Hemochromatosis Society and ask them where your husband can get help near you.

The Canadian Hemochromatosis Society
272 7000 Minoru Boulevard
Richmond, BC V6Y 3Z5
Toll-Free (Canada): 1 877 BAD-IRON (1 877 223-4766)      
Phone: [phone]
Fax: [phone]
www.toomuchiron.ca
email: ***@****


hector





We can not help your husband. It is your decision alone.

[panda2526]

I don't remember asking you to "help him", I realize that's not an option...none of you are drs... and I am aware that it is our decision. I recall asking about those that have been through treatment already and what their experience was, so I could help tell him what to expect, and so I can know what to expect as well, being the partner of someone who goes through this time.

You are not telling me anything I don't know about HHC...I have studied it until my eyes bleed...Everything you wrote regarding his illness I can repeat off by heart.

I am still learning about Hep C, more so from the standpoint of treatment and how best to go about that. I was confused about the biopsy report. Thank you all for helping me with that. And thank you for the contact info for Canadian HHC Society. Have that as well. Never thought of calling them about this, so thank you for the suggestion. Sometimes we can't see something right in front of us. There's a lot to absorb these last couple years.

I have been working night and day trying to get this all figured out. So don't think that I don't understand the urgency of this situation and the implications for him, myself and our children. He has 5 kids, all who want to see him get well.

It is forums like this that we come to for advice, encouragement and moral support, as I'm sure you have received during the course of your journey.

C

[panda2526]

PS

By the way, in case you missed it, we only found out about his HHC 8 weeks ago, and since then have been doing everything humanly possible to get the HHC thing "under control". This has been and remains our priority as we plan for the next phase, which is Hep C treatment. His iron levels have already come down to the levels they told him to have them at before he can start Hep C treatment. He needed ferritin below 100, TSAT below 50%...he's almost there. Last test showed ferritin at 164 and TSAT at 34%. That's why my thoughts are now shifting to Hep C mode...only another phleb or two and we can get going on the other issue at hand.

Which is what I was wondering about in my original post, understanding how it all relates to treatment, and how I can help him with the anxiety surrounding the side effects and chances of him becoming virus free...

C

[orphanedhawk]

Please calm down.
Take a good deep breath.
I read Hector's response and thought he was trying hard to assist you.

It's understandable to be upset in these circumstances.
Hector himself has survived cancer and is on the list to be transplanted. He should have his new liver within the next couple of months.
Despite his advanced illness, he kindly gives much of his time and energy into helping people on this forum.
We are very lucky to have him here.

Your being upset will not help your husband's anxiety.
And attacking people who are trying to help is not the way to get assistance either.

[einsteinus]

Just hope for the best and expect the worse. I got all excited when I went virus free for a month....sounds like you have everything going for you and the dedication to get it done. I had to watch my wife go down from colon cancer at 53 leaving 3 kids behind.  Now those 3 kids only have me...and wouldn't ya know it I have HCV.  Keep your head up and keep reading and for g-ds sake take care of yourself as well as the one's around you....prayers here...

[einsteinus]

PS - and you are a going to feel a lot of stuff being you are dedicating yourself as you are. Not enough is said about the factors that go into caring for the sick. It takes a lot out of you. It's hard enough to deal with your own feelings plus those of your hubby and everybody that has a dime to throw in for advice.  Like Hawk said take a deep breath -- talking to us here is OK and one thing I have learned doctors are not g-ds nor perfect. If you are not satisfied with what you are being told -- ask questions. Good luck at make sure you are getting some good solid sleep every night-- this stuff really takes it toll on care providers

[panda2526]

Actually, I read his comment and took from it what I needed, at the same time I felt that it was slightly abrupt and black and white. I have all the facts and figures I can handle...I thought, and maybe I was wrong, that I could get something other than a stern talking to, like I am somehow unaware of my husband's plight...

I appreciate the feedback, and I am by no means "attacking" anyone. I am responding to the information as it was presented to me, and how it came across to me...I understand another person's story is their's...how they've dealt with it is their personal story. This was mine.

Yes, it is an emotional time, and I have been doing my best to remain calm and reasonable. I know Hector is awaiting transplant, and that he has a great deal of knowledge. As do many of you others. But I was asking for ideas on how to look ahead to treatment...not for a lecture and talking about how he feels sorry for my children who will have to watch their Dad get progressively more disabled and in pain as they grow up and how much it will impact them as it already has, and that no one can help my husband, it is my decision alone...I am confused by some of the things that were implied, and I wanted to clarify my/our position...this is all new, not something that we've known of for a long time.

I just really feel from where I am sitting, that the language and wording was strong and a little cold...I was hoping for something different, I guess from people who have been there before.

I did not intend to attack anyone...apologies and I'll carry on my way.

[orphanedhawk]

I'm pretty defensive of Hector probably because I'm one of the few who have been in his shoes, or somewhere close.
I know how hard it is to function when you have hepatic encephalopathy.

If his wording sounded cold, maybe it's because he is trying to simply state the information as clearly as possible.

It's hard when you can't think straight and I'm always amazed at how well he does. I was so fuzzy headed before my transplant.

We do need to remember that many of our members have strong symptoms of liver disease and/or side effects from treatment.

[panda2526]

I get it...I understand the very real health implications and complications. This is a scary disease, anything to do with the liver. I, too, have watched people I love be affected by diseases of the liver, in various ways. I am only 42 and I have had much experience in life so far with losing loved ones to liver disease.

Hector, I empathize with your situation. I said previously I admired your comments to others due to your level of knowledge.

But there's real people behind those stats...and I'm new to all this and I am having a difficult time juggling all I need to know, versus what I need to do as a wife, a helper, a nurse, a psychiatrist, a secretary, a medical tech (feels like I need to be getting my doctorate) and the best mother to minimize the injury emotionally to my kids, and I am well aware of those aspects.

I have been a long time caregiver for many years...my grandfather died at 64 of cirrhosis, my grandmother a few years later of liver cancer...and now my husband has two serious liver diseases. It's a lot to comprehend.

I also feel it's therapeutic for me at times to share something I've learned to help someone else on my quest for knowledge, and I attempt to do it with empathy and dignity.  I really wish all the best for everyone here...perhaps in the future I will return and update on our progress. I think I have all the info I need for the time being, and again, I appreciate the insights and suggestions that I can use for our personal situation.

C