Dr. does not want to treat stage 2 liver disease with Hep C

[Lit1116]

I recently went back to this dr (gastroenterologist) I had seen back in 2007.  At that time I was not yet on disability and therefore all he said was your hep c is dormant and no cirrhosis.....   Well, my family dr. just so happened to refer me to this guy again!!  I did see him in his office 3-30-11 and had a CT guided liver biopsy on 4-7-11.  Get this: I haven't spoken to him AT ALL since 3-30-11.  I called his office on 4-14-11...left message and his nurse practitioner returned my call. "yes, you have fibrosis in the left portal area."  ok...and why has the dr. not contacted me and when did you get the report?? He is not in and your report came in 4-11-11.  I guess this dr. was not interested or my stage 2 liver is just fine to him!!?  Anyway, I never did see him. I went ahead and made an appt. to see a nurse practitioner in the hepatitis clinic!!!  This group of folks do not want me to have treatment. I know that I have probably had this for, at least, 22 years.  I have many symptoms...and I am tired!! Mentally and physically...thank the Lord...I am strong spiritually or I wouldn't be getting through this.  My body is sick and out of shape.  I need to start watching what I eat and losing alot of weight.  However, depression on top of this is overwhelming!!  I am praying for all of us that have these diagnosis to deal with!!! Any support will be much appreciated!!!   Lit1116

[Lit1116]

Hi!!!!!

Praying you all are havinga great day!!  You have been on my mind off and on today!!
I have had the tech support in my computer for the last couple of hours.

I am elated that our Navy Seals completed their mission!!!  Bin Laden is dead!!

I am having a very slow day today.  Not much energy!!  Plus, it is 88 degrees here today!!
So hot!!!!

I thank my God and My Savior that we had a decent day; and be thankful for  everything he is to us and everything he does for us!!

Have a great evening!!

[Lit1116]

Praying all are doing well!!!  It has been a beautiful day!!
I had my daughter and grandson over for a couple hours or so.

Have a great evening!!

[Lit1116]

I don't know what the "watch list" is yet...however, I am checking that block.  I am sure it has something to do with keeping up with your notes, etc....
Take care and God bless you...today!!

[Lit1116]

Hi there Trish!!

Praying you are having a good day!!  It is sunny down here in lower Alabama!
I have been on this site checking it out quite a lot today!  There is soooo much to learn and study!  Thanks for being here for me the first day that I find this site and sign up!  Pray we can be friends for a long, long time!!

Lori (Lit1116)

[Lit1116]

Yes, I believe I have the time!!  Thank the Lord.
I have just not felt well in so very long.
I am taking your advice and slowing my mind down on all of this.
I do want to keep up with the new treatments and what happens with the FDA approvals and all.  I need to be thankful that, at least, I do definitively know that I have liver disease/Hep C.  I will be looking around for another physician.  I do not feel comfortable with him.  Like I said I had seen him in 2007 and hadn't heard a word since.  And, bless my family drs. heart, he at least did the test for HCV and it is positive.
Thank you for your words of wisdom, too!!

We will talk tomorrow.  Good night.  Church services come early!!

Lori/lit1116

[Trish77]

Lori,

Truth is that treatment for Hep C is more effective for persons with normal BMI.  If you need an incentive to lose weight, there it is.  It's hard to lose weight and deal with depression.  Very tough.  I hope you can get some support from your doc on this as it will help when you do treatment.  Having said that, it's not a showstopper either.  Lots of folks here with not normal BMI go through treatment.  Just something for you to focus on if you can.  You do have some time to learn about this disease and there is a lot to learn...so I'd take the time to find yourself an experienced hepatologist in light of your other health issues and learn as much as you can about this disease.  Also with the new drugs coming onto the market and heading for FDA approval, it's a good time to wait if you have the luxury and see how things shake out with those drugs and you do have a bit of time to wait thankfully.

Trish

[Lit1116]

ok....Bill.   I am certainly listening to you!  I appreciate your input...it means much to me!
Yes.  I will get back on here tomorrow.  Like you said this is no emergency!  lol.
(Just for fun: I have to see how to put a pic up on here.  You did!!  lol)
Thanks for your words of comfort for tonight!!

Have a good rest....

Lori.

[Lit1116]

Thanks, Hector!!  

Yes, this is exactly what I have needed!!
I have been overwhelming myself with so many things!
I am on disability....I had a heart attack 10-24-05 and 05-06-06...both times had heart caths with angioplasties and stent insertions.  I did have a 3rd heart cath, however, the dr. said he didn't want to insert another stent, yet.
I did see my cardiologist last month. He says my heart is doing ok for now.
I, also, have diabetes...I was initially diagnosed with DM borderline....129.  Since last August...when I changed drs., it had spiked to 215...I am on metformin 850 mg. twice daily.  I checked it yesterday it was 107 and the day before 97.  I haven't checked it today.
So, most of the time that is under control.  I do need to lose alot of weight.  The depression keeps me inactive.  Which I do need to work on so badly, guys!!  However, I have just been diagnoses "for certain" that I do have this Hep C.  I went to this gastroenterologist in 2007.  He did NOTHING.  Anyway....this is more of my medical history for you to review.  Check me out!!  lol.  I need all of your words of wisdom.  I am going to start to work on my anxiety now that I can bounce off of you all!!!

Thank you!!

Lit1116=Lori,

[Bill1954]

Hi Lori—

I’m sorry to hear you feel so crummy; depression alone can be a real b!tch. I obviously can’t answer for your doctor; although he probably didn’t see an emergency situation with your biopsy results, and figured he’d go over them with you at your next appointment. Often, the ‘no news is good news’ applies.

By your own admission, you’ve had this quite a while; another month or two, or even a year really won’t make a whole lot of difference in terms of disease progression; I imagine you can afford to sit tight for a bit, take a load off yourself, and figure this out.

Do you have good health insurance? treatment can be rather pricey. With genotype 1, you’ll probably require at least 48 weeks of therapy; without insurance this will likely cost in excess of $USD 50,000; perhaps considerably more.

How is your social structure; do you have family or friends around for emotional support in the event you felt poorly through treatment? Lots of things to consider, yes?

Stop back in here tomorrow; you’ll probably get some other perspectives by then. Have a pleasant evening, and take care-

Bill

[Trish77]

If you learn anything with this disease, you learn to slow down and wait things out.  It takes awhile for test results and decisions to get made.  Your biopsy arriving at the doc's office on the 11th and you having to call on the 14th doesn't seem outrageously out of whack to me.  I don't know how many other patients he has but you're likely not the only one and it's possible he hadn't even seen it yet.  April 11th was a Sunday and you called on the Wednesday.  So maybe there's a little slack there.

On the other hand...if you don't have confidence in this doctor, then perhaps you need to be looking for one that you trust and have a better relationship with than this one.  You do have a bit of time to that.  As Bill said, Stage 2 is getting along but not of immediate urgency.

Good luck with this.

Trish

[HectorSF]

Hi.

In addition to Bill's points...maybe this will help us understand your current health status better so we can be more helpful.

You say you are having many symptoms and imply at least some are related to your hepatitis C. What are the symptoms you are experiencing that you believe are caused by your hepatitis?

You say you are disabled. What are you disabled from? Depression? Are you being treated for depression?

Since you are so unhappy with the service that your current healthcare people are providing, why not look for someone who is concerned with you and your health and that you can talk with so you understand what is going on medically with your health? You can have all your records transferred to you new doctor's office so your history wouldn't be be lost.

Good luck.
Hectorsf

[Lit1116]

Thank you SO much, Bill!!!  You are right!!  I need to slow down and listen to you!!   Yes, I deal with depression.  However, alot of mine is because I do not feel physically well !!!  I have been going to a new family doctor the last 10 months...and every single time I go to him I have been asking him to help me because there IS SOMETHING WRONG WITH ME!!  I am usually crying and certainly in pain.  I have alot of pain.  It seems as though I am falling apart at 48 years old!!  So, I am glad he did the HCV RNA test....however, I just do not know about this gastroenterologist that ordered the CT guided liver biopsy and HE did not call me about it....I had to call them!  What do you think?!!  Thanks!     Lori is my name....my brother calls me LIT.  lol.

[Bill1954]

HCV management is rarely an emergency; and unless cirrhosis is looming large, it’s quite possibly better to stop, take a deep breath and learn a little about this disease first. There are many stage 2 patients right now doing the ‘watch and wait’ in favor of better treatment modalities.

HCV treatment is in flux right now; the current standard of care to treat it includes the drug combo interferon and ribavirin. While some folks scoot right through it, others get pretty ill and find it grueling; comparable to cancer chemo in some instances. Plus, depending upon the genotype, or strain of HCV, you might only have a 45-50% chance of success after 48-72 weeks of therapy.

Newer, more efficacious drugs are pending FDA approval right now; in clinical trials, these drugs when combined with the current interferon/ribavirin have greatly increased the long term success rates for some strains of HCV.

And finally, yes; the drugs can exacerbate depression and anxiety in some patients; doctors routinely screen their patients for psych issues and in some cases treatment is contraindicated. Have you been hospitalized for mental illness in the past? Any history of suicidal ideation?

Take some time, read and ask questions here and of course of your doctors.

Good luck and take care—

--Bill

[Lit1116]

I have the genotype 1a.  My family dr., who is wonderful, did the HCV RNA testings at his office.  Then, I found out...myself...through research about the genotype.  So, I called his office and asked him about that and he said genotype 1a.  He had not even told me about that...I had been studying up on Hep C.     I don't know about this gastroenterologist...I am going to listen to you guys for a little while and get more information!!!!  Thanks!!!!!

[Lit1116]

Hi Bill!!!   Thanks for responding so quickly!!  I am just now learning about Hep C and about having Stage 2 of 4...which this nurse practitioner said is "Not bad at all."  Neither she nor the dr. that referred me for the CT guided liver biopsy want to do any treatment...saying that my depression can make the treatments of interferon and ribavirin worse.  To be honest, this doctor is not interested!!  I see it in his work and in his actions.  What do you think??  Oh...she tried to tell me that there is really no fibrosis until you have cirrhosis.  That is not what I have read when I am studying up on it.  Bill, I have processed claims since 1983...I have been on both sides of the fence...the insurance companies I worked for, The Travelers in Dallas, Tx...and I have worked in hospitals and in doctor's offices all over.  I DO KNOW ALOT ABOUT WHAT I READ AND STUDY...the more in-depth medical, of course, I am NO doctor.  What do you think??!!

[Bill1954]

What is your genotype? It might not be in your best interest right now to treat your disease, pending approval of newer, more efficacious medications.

Are you familiar with the DAA drugs Telaprevir and Boceprevir? The new classes of HCV drugs are making marked improvements to disease management; discuss these with your doctor.

Welcome to the discussion group,

--Bill