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anemia

Anemia

    gklouisiana

07/13/07
I have been reading this forum for a couple of weeks.  My husband has Hep C that has gone untreated since 1988.  We found out in May that he is stage 4 cirrohosis.  He is a geno type 2.  The doctor did a liver bx May 18 and said we need to start tx right away.  Last night was our 6th shot.  Last week he had to have 4 units of blood because of a 4.3 Hgb and then today we get a call and say we need to report to the hospital to get more blood, most likely another 4 units because the Hgb is 6.3.  He did not want to go to the hosptial today but have scheduled to go next Monday.  I am very worried about him.  He is on rx for amonia and his stomach is enlarged.  He is taking Rx for the swelling.  He seems to want to sleep most of the time.  All I do is worry.  I just want him to get better.  I am afraid they might stop the tx and we both don't won't to stop.  Do people have this kind of problem with Hgb going this low.  He started out with a low Hgb of 8.9 to begin with.  I know he is very sick but the doctor says he thinks he will be able to help him.  If anyone has any feedback I would appreciate it.  I have learned so much just reading what everyone says.

  





  
  






15 Responses
217229 tn?1192766004
LOL!

I just answered your other post - others will also. Hang tight - I know you're probably totally freaking out and have really no where else to go...

But most everyone here takes their shots on Friday --- so a lot are already out for the count. And will be back up in the next couple of days.

Some will be back online after a short cat nap.

But most are probably already asleep.

Hang in there - ok?

And if you EVER think things are bad enough to call a doc - or go to the ER - don't wait for anyone on a forum to tell you that --- Go. OK?

Hugs,

Meki
Avatar universal
Sorry, I posted twice.  I am new to posting on a forum.  I thought I should actually put a topic and not just my name.  

Thank you, I do need support.  

I guess we are differnet because we started the shot on Thursday night.  John is not working at the present.  He has  type A personality.  We got the rx on a Thursday and he was ready to start immediately!
217229 tn?1192766004
LOL!

You're doing just fine --- I posted a kind of help thing about forums... but I'll repost it here for you ...

Forums can get really confusing at first. But you get used to them very quickly. I promise.

Super hugs - and no problems at all - ok? I'm type A - and can completely identify - LOL!
-------------------------------------
Repost
-------------------------------------
You're doing fine.

Think of each thread as a "THREAD TOPIC" or CONVERSATION that everyone can join in.

For example:

THREAD TOPIC A - WHY DO I FALL OUT OF BED AT NIGHT?
Joe: because you roll over.
Mary: Because you are reaching for a glass of water
Jane: Because your predispositioned to klutziness.


THREAD TOPIC B - HOW DO I PICK UP A GIRL?
Joe: Well you build your muscles up first.
Mary: Uhm I don't know, haven't tried it before.
Jane: Hey babe, I'm available.

Now - each thread topic or conversation has a line of posts in it usually related to the topic... But each poster's opinions or thoughts.

So the THREAD TOPIC is like the Title of the Book.

Where as the individual posts are like the conversation about That book.

Most people only read threads that have a topic on it that they are interested in.

If you want to "BUMP" up a post topic - you can post in it - and it will bring the post higher and higher to the top.

Try not to start multiple thread POSTS of the Same Topic. Because you'll end up  all scattered.

AND -- most important --- Try not to start a new conversation thread topic inside an already happening topic.

Because most people will have read, answered and moved on --- and they won't see your post --- which MIGHT be VERY important. You know?

So this is a nonononononononono:
NO-NO-NO EXAMPLE:
THREAD TOPIC A - WHY DO I FALL OUT OF BED AT NIGHT?
Joe: because you roll over.
Mary: Because you are reaching for a glass of water
Jane: Because your predispositioned to klutziness.
Nick: I used to fall out of bed. I broke my toe yesterday, I think, so it is kind of purple do you think I should go see a doctor?

Why is NICK'S Question a No-No?

Because there is a good chance Nick's question will NEVER get answered.

And he may be sitting there hoping for an answer --- but Jane, Mary and Joe have already commented, left the "THREAD TOPIC" and have moved on. They might not go back.


The threads move up as each person posts inside them.

You can go through the pages of the topics - and read the conversations --- posting inside the THREAD TOPICS --- and maybe adding your own comments in the conversations.

I don't know if this is helpful - but I hope it kind of explained how a forum works.

Meki
86075 tn?1238118691
you know, I'd go to janis and friends website...they have a lot on cirrhosis, etc...that you can read up on...it has plenty of literature to go through...

http://janis7hepc.com/Cirrhosis.htm

hugs to you and yours in your hour of need...never give up hope, people can pull through the most daunting of challenges...
146021 tn?1237208487
Jklouisiana-I have so many questions, hope you don't mind. What meds is your husband on, (peg-intron or pegasys) and how much ribavirin is he taking?
What kind of dr is treating him, gastro, hepatologist? Has he ever been txed for ascites or varices? I'm not a dr, but with Hgb that low to start with, it sounds as if he's got some kind of bleeding going on inside. I don't blame you for being scared and worried. The amonia build up can make him confused forgetful, less able to think clearly. You have to rely on your instincts right now, and not his.
I just hope you have a good dr that knows what he's doing. Have you asked him why he started him on tx with Hgb so low to begin with?
JK, if his Hgb is dropping you may need to get him in earlier than Monday. I know you don't want to stop tx, but he doesn't sound like he's medically stable right now. I know we have several members who had transfusions, hopefully they will answer some of your questions. Also, we have a member who had cirrohsis and just ended 32 weeks of tx Thursday. They adjusted her meds due to her low wbc.
Good luck, hang in there. It's so hard to watch someone you love go through such a hard time.
Bug
Avatar universal
He is on peg-intron and has been dropped down to 3 ribs instead of the five he was taking.  The dr is a certified heptaologist.   We had a endoscope done of the esophogus when we did the bx and he saw no bleeding.  No scoping of the stomach was done. Scan and ultra sound showed no tumors.  Alot of the problem was my husband treated himself for a long time.  He did not realize it was his liver.  John is a nurse anestheist.  He had been having nose bleeds and everytime he cut himself he would bleed for a long time.  All the signs were there that it was his liver but he just did not think about it.  I think the big problem with this doctor is he tested him and then went out of town for two weeks living instructions with his office about rx but should have worked on the hgb.  My husband asked him point blank about the low hgb and never got an answer.  All my research so far  is looking like he is showing end stage liver failure.  He is a fighter and I am sticking with him all the way.  Glad I found this sight for the support and the knowledge that everyone seems to have.
87972 tn?1322664839
Hi GK,

It’s good to hear he received a transfusion. Most doctors consider intervention for ribavirin-induced hemolytic anemia at around 10.0 g/dL. Many will consider transfusion at 8.5, so your husband was well overdue. Keep in mind that the end-point for hemolytic anemia is cardiac failure; this is something that is can be a serious issue, obviously.

Intervention can consist of dose reduction, dose cessation, Rx with Procrit, Epogen, and Aranesp. These are all forms of human epoetin. The last method of choice is generally transfusion. Generically, these products are known as epo, and are used extensively in cancer chemo; over the last few years, they have been used successfully for HCV treatment as well. Prior to these meds, dose reduction was the norm, but this reduces the patients chance for successful viral eradication.

Does your husband have any history of cardiovascular disease that might contraindicate him from epo? Additionally, as mentioned above, a baseline Hgb value of 8.9 is very low, especially for a man. Men typically run 13-14 g/dL baseline. Has your hubby been tested for any genetic disorders like Thallesemia? We’ve had forum members here with Thallesemia that were intolerant of ribavirin, even with the addition of epo.

I assume he’s currently prescribed Lactalose? I believe Neomycin is sometimes Rx’d as well.

If it were me, I’d consider a trip to ER sooner rather than later for transfusion, unless his Hepatologist states otherwise. As a RN, he must realize the consequences he faces; also keep in mind that you might have to overrule some of his decisions. Increased serum ammonia can lead to confusion and combativeness; he may be unable to process the information objectively right know.

Good luck to you both, stay in touch, and let us know how things progress.

Take care,

Bill
163305 tn?1333672171
I wasn't diagnosed until I had cirrhosis and ascites, the swollen stomach. I was able to deal with the ascites with diueretics and taking salt out of my diet. When I started tx, I too, was extremely fatiqued. He should go ahead and rest. I haven't had low hemoglobin but I did have low platelets and white blood cells. Is your husband taking procrit for the anemia? Tx can be very hard but once he is on the other side and free of the virus his liver can regenerate itself.
   I'm pasting an excerpt of a letter from a man in the U.K. who IS FINE NOW to give you some hope:

  My short story is that I was mis-diagnosed by a doc and had hepc and hepb at the same time. It ravaged my liver for over a year before it was caught by a different doc in that same clinic. I had geno 1a with stage 4 of 4 cirrhosis. I was told by 2 different specialists that I had no hope and that I should get my affairs in order. They gave me 2-5 yrs to live. That was in 1999. I am now virus free due to tx of the original interferon and riba virin and then 8 months of peg. I did 136 weeks of treatment. It nearly literally killed me and I lost my job and career.

  
146021 tn?1237208487
Thanks for all the info. Good thing your husband is a nurse anestheist, and you are seeing a hepatologist. Still, I have to agree that it was not a good idea to leave town and start him on tx whith Hgb that low. Sometimes dr's. treat other medical professionals in a more cavalier way, assuming they know more than the ordinary patient since they're in the field. The problem is that you're husband is too sick to think clearly, and look at the problems he developed while trying to treat himself.
Please stay in touch, I'm sure he can be treated, but maybe the cart got ahead of the horse here. (I'm the idiom queen)
As the others have pointed out, there are rescue drugs that can help boost the hgb, but if he has a bleed somewhere, it's like pouring water into a leaky bucket.
Good luck,
Bug
Avatar universal
Yes, he has a heart condition.  He has had two aorta valve replacements and has been told the aorta valve is not functioning good now.  Also his mitrial valve is showing problems.  In 1988 he had a Type 1 aorta dissection.  That is when he received all these blood transfusions and contracted Hep C.  Also, in 1988 they had removed part of his colon and now he has chronic short bowel syndrome.  Back in 1988 was a nightmare for 12 weeks in the hospital.  He fought hard and we won that battle.  That is way I am hoping we will win this battle.

He is taking neomycin for the amonia because he did not want to take the laxative treatment since he alreays has problems with his bowels of going to the bathroom all the time.

I did not give him his ribavivin today.  Last week the doctor had us to stop until he received the transfusions.  I will talk to the doctor Monday and see if I can start again after he receives the transfusions.  

At the present he is flat on his back resting and sleeping.

The doctor did say we would be alright to wait until Monday but no later.  I gurantee you next time I will not wait just because he does not want to go in.  He is confused and I need to take over to make sure he gets the best treatment.  I do call the doctor's office a lot asking questions.  I am sure they are getting use to me.  I must say, that this forum as educated me a lot.

Again thanks for giving me your imput.
217229 tn?1192766004
NEVER LISTEN TO SOMEONE ON TREATMENT

If you feel you have a logical and realistic grounding.

Most of us are stubborn, obstinate and are always FIGHTERS.

We fight to make everyone, including ourselves believe we are ok.

NEVER LISTEN TO US.

If you're of a sane mind and sound body - you take over control.

Because we'll tell you we are "alright" when we hurt, when we're sick, when we're feeling like we're dying.

OK?

Hugs to you.

Meki
229903 tn?1191086451
Hi GK,
I was wondering if your husband had his viral load checked at the 4 week point? It could be that he is a rapid responder (undetectable at 4 weeks) and as a genotype 2 (the genotype with the highest success rate in treatment) it could be possible to shorten his treatment to 16 weeks with almost the same chances of success as going the full 24 weeks.  Seeing that he's having such a difficult time with treatment it would be nice to know if that is an option.
You said that your doctor is a hepatologist, so I'm sure he knows what he's doing.  Of course, I don't know how the dose reductions of ribavirin would affect this outcome.
I remember the first time my husband treated and his doctor went out of town.  I read an article in the paper about kidney failure and it sounded like he had every single symptom!  He was so miserable.  I e-mailed the doctor's partner to ask him if the treatment ever causes kidney failure and if he was dying.  I felt better after he called me back to say that kidney failure wasn't a known side effect!
It can be scary being the caretaker of a very sick spouse.  You hang in there and keep us posted.  I hope you'll let us know what happens on Monday.
217229 tn?1192766004
You guys all ROCK!
Avatar universal
First, there may be a silver lining in all this.

Some researchers suggest that drops in hemoglobin (anemia) may correlate positively with SVR (cure). In other words, your husband's significant drops may be telling us that the drugs are working very well. Did he have a week 4 PCR (viral load test) ? If not, ask your doctor about having one as soon as possible. More and more doctors are now testing earlier than week 12.

Next, as Bill suggests, don't screw around with hemoglobin. If your husband needs another transfusion than he should get one right away.

Lastly, I assume your husband is seeing a liver specialist (hepatologist) as opposed to a gastroenterologist. Your husband's case is complex for a number of reasons including his stage 4 status. A Hepatologist would be better trained in handling his case.

All the best,

-- Jim

Avatar universal
Just want to let everyone know that my husband got three units of blood today.  He stayed awake the whole time.  We got to the hospital at 8 a.m. and got home 4:30p.m.  Fed him and he went to bed.
I wanted to know before we left the hospital what his hgb was after getting the three units but the nurse said the dr did not order a CBC.  That seems weird to me.
I put a call in to the office to find out if I should start him back on the ribo like we did last time and when should we come back for more lab work to check the hgb. Get this.  The nurse said she could not answer my questions she would have to go ask someone in the office and call me back.  Never heard back from her.  I will call the dr office in the morning and make sure the dr knows that this nurse is absolutely awful.  My husband is very sick and I am sure there are other sick hepC patients that are using this dr.  and he really needs to get an experienced nurse!!

Jim- I hope you are right about my husband responding to treatment.  No, we are scheduled to have a 12 week test.  The dr. did tell me that some # looked better in the lab work  that did on for the 4 week check up but I can not remember what that was.  Other than the dr said the lab work showed that the liver was doing better.
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