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RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 6/18/2006 8:57 PM (GMT -7)   
Just found this forum. I'm active on several forums, mostly having to do with cars and racing. I never thought I'd be joining a forum such as this or discovering I had hep c.
 
I was only recently confirmed as having the virus. I've had several blood tests, but only recently did they connect an elevated ALP(?) enzyme to running the hep c test. My doctor told me, almost matter-of-factly. As I was leaving his office, he asked me "what are they were treating your hep c with."  I was stunned.
 
"WHAT?" I asked.
 
"Oh yes....we tested you for hepatitus c and you're positive." That was confirmed with a 2nd blood test and now, the beginning of the learning process, at least with respects to hep c. I was never so shocked in my life.
 
I went to LabCorp for blood work last week, which I understand will reveal what type of hep c I have. On the 29th, I'm schedule for a liver biopsy. I have a lot of questions and a lot to learn, but will start with this brief introduction. I don't think I know enough to be scared yet.
 
Of course, I'm clueless about how I contracted the virus. I am surprised however, that during my separation physical when retiring from 20 years in the US Navy, they didn't catch it then, considering all the overseas duty I served. You'd think that would be one of the things they tested for.
 
But, as I've already learned, at this point it's not about blame, it's more about what to do now. Now...I guess I'll just wait to see what type I have, then take it from there.
 
RR
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/19/2006 6:58 AM (GMT -7)   
Hi, RutRow and welcome! How long ago did you retire from the military? Until 1991, there was no test for hep C. Your liver enzymes may not have been elevated much at that time, either. BTW, that is ALT, a liver enzyme that elevates with liver disease.

What doctor will be doing your biopsy? Is he a GI doc or hepatologist? If not, and your biopsy shows chronic active hep C, I recommend you find a good hepatologist right away.

Keep reading about the disease and keep coming back here. You will find a lot of knowledge and support here.

Connie

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/19/2006 7:25 AM (GMT -7)   
Hi RR,
 
Welcome, wish you didn't need us but you will find information, support and others who care and share similar liver problems. More and more is being learned about hep c and treatments are available to control the virus.
 
My husband has cirrhosis and esophageal cancer. He developed Hep A when in boot camp during the Korean War which was not discovered until he developed liver disease and a panel for hepatitis was done.
 
What is sad is that Gene has a rare blood type and was frequently asked to be a donor. Of course, he didn't know he had hep and tests were not available at that time. I wonder how many people he innocently spread the disease to.
 
Keep us informed with the results of your biopsy and how you are doing and handling all of this.
 
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/21/2006 9:12 PM (GMT -7)   
welcome rr,
sorry to hear about ya diagnosis,,,but keep ya chin up,,,make sure ya have a good specialist and a good family dr who is knowledgeable about hep c,,,,and do what they tell you ,,,,eat right,dont drink,,and fight this,,,ya can do it!!!!!!good luck and hope to see ya comin back alot,,,,hope to be of help to ya
trish
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 6/22/2006 4:59 AM (GMT -7)   
Retired from the military in 1998.

Will be getting my lab results back on the 25th. I've had a sore throat for about a week now, plus I'm tired all the time. 12 hour days never used to bother me. Now they're wearing me down.

Thanks for all the responses. It seems a significant facet of the battle I'm just now starting is waiting.

How long will I be sore after my liver biopsy? I've heard it wasn't too bad....

Thanks everyone.

RR

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/23/2006 4:41 AM (GMT -7)   
Hi, RutRow. You may be tender for a day after having the biopsy, but that's it. After the biopsy, you can expect to stay in the hospital with a towel rolled under your right side for about 5 hours. That is to suppress bleeding. Then you can go home.

Fatigue is the #1 symptom from hep C. I believe it's also a big symptom in A and B, but I cannot speak on those as I only have active C.

Barb, I always thought that A is primarily contracted from contaminated food, and the only cure is rest. Or am I mixing this up with something else? Of course, Gene's blood would be contaminated if his immune system had not kicked out the virus.

Hugs,
Connie

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/23/2006 1:29 PM (GMT -7)   
Hi Connie,
 
You're right in how hepatitis A is contracted. However I have a friend who also had hepatitis A and liver problems permanently after the acute infection. She is not allowed to give blood because the hep A is in her bloodstream. They may simply not want to take any chances.
 
Hope everybody has a nice weekend. Gene is checking his blood glucose levels; they are still high but won't know until a week of sampling what the doctor will want to do.
 
Barb
 
 
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/24/2006 7:40 PM (GMT -7)   
not sure how they took the biopsy,but my husbands was through his neck,and it was sore for a day or so,,kept the clear bandage on for 3 days i think,but had some pain in his shoulder from it,,,he was told the liver causes pain in the right shoulder,displaced pain i think they said,,,hope ya get the answers ya lookin for here:)
trish
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 6/28/2006 1:01 PM (GMT -7)   
Go for my biopsy tomorrow morning. Finally revceived my lab results. Genotype 1B. I have a lot of research to do, but it seems I have one of the least receptive strains for treatment. I guess my biopsy will give me guidance as to what the next month or two will hold. Any other 1b's in here? Advice?

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/28/2006 8:24 PM (GMT -7)   
hope the biopsy goes well for ya rutrow. I hope your liver is not too severely damaged and your able to start treatments soon.
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 6/30/2006 4:33 AM (GMT -7)   
Biopsy was almost painless. The 4 hours afterwards was hell. Felt like I was passing a gallstone and THAT was the worst pain I had ever experienced. Better today...even came to work. Now I understand it's a two week wait until by results come back. No tennis or bowling tournaments for me, I suppose.
 
RR

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/30/2006 5:55 AM (GMT -7)   
"No tennis or bowling tournaments for me, I suppose."

Well, I'd wait for 2 weeks before doing anything that strenuous, but you can ask your doctor. Yep, the 4 hours afterward was bad enough for me to accept Demerol in the recovery room. The next day I was fine, though.

Please come back and let us know what your biopsy reveals and how you will be treated. Meanwhile, enjoy the long weekend.

Connie

RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 7/11/2006 5:24 AM (GMT -7)   
Okay...starting to get a little frustrated. I was told my doctor has my biopsy results back yesterday, but it will be August 1 before they have any available appointments. It's been 58 days since I was first diagonosed TOLD I had Hep C and I have yet to sit down with a doctor and discuss treatment, what I can and cannot do, my future or what I should eat. Now that they have my results, it will be ANOTHER THREE WEEKS before I can see the doctor?
 
I'm exhausted all the time, have a persistent cough for the last few eeeks, feel feverish and weak, and my feet are freezing all the time. The only information I have received is what I have researched on the darn internet. They won't discuss anything over the phone.....
 
Is all this waiting NORMAL??
 
I'm going to have a stress related heart attack long before the hep does me in...... mad

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 7/11/2006 10:03 AM (GMT -7)   
Hi,
 
I feel for you; waiting can be the hardest thing to do and I'm troubled, bu not surprised they can't give you an appointment sooner. You might consider a second opinion hepatologist who can get the results immediately.
 
Because of HIPPA regulations they don't want to give out information over the phone.
 
Call the doctors office daily to see if they have any cancellations.
 
Sorry for your wait,
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/11/2006 2:39 PM (GMT -7)   
Rutrow, I understand your frustration. I think we all end up doing a lot of waiting.
I would try to see a hepatologist, and then let him get the results. There is really not a list of things to do or not do--do what you feel up to doing and as much as you can reasonably do. DO NOT DRINK ALCOHOL! That is a huge thing to remember. You will not be accepted as a blood or organ donor at any time. The fatigue is almost certainly the direct result of the Hep C, but your other symptoms could be from a virus or other illness.

Good luck and let us know how you are doing!

Connie

RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 7/17/2006 9:14 AM (GMT -7)   

I went and picked up a copy of my biopsy results. My appointment isn't until August 2nd, but I couldn't wait any longer. Stage 4 micronodular cirrhosis with moderate to severe inflammation and moderate to severe steatosis. Even though it doesn't look too good, I'd rather know SOMETHING than sit around for 3 weeks. I'm not sure if this will be treatment or start looking for a donor.

I looked up steatosis and found some more symptoms that I've been experiencing, such as achy joints and cotton mouth.

I can wait for the doctor now.... For some reason, I'm more relaxed.


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 7/17/2006 2:57 PM (GMT -7)   

Hi Rutrow,

You are very brave reading your biopsy report on your own. I'm glad you're relaxed and ready to wait for your August appointment.

Whether it's time for treatment or a transplant, we are all here for you. You are in my thoughts and prayers.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/17/2006 9:38 PM (GMT -7)   
Rutrow, I'm sorry about the biopsy diagnosis. I would want to know, though, and not wait that long to find out. I don't believe they give Hep C treatment for patients with cirrhosis. There is no cure for cirrhosis, but you should be eligible for a transplant. There is a lot of testing before being put on the transplant list. I can tell you that Mayo has the lowest wait time for a liver of any place in the US (in their 3 facilities combined: Rochester, MN; Phoenix, AZ, Jacksonville, FL.)

Hugs,
Connie

RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 8/7/2006 9:56 AM (GMT -7)   
FINALLY....I was able to see my doctor with the purpose of discussing my biopsy results. He reported that I had hep c genotype 1B.......
 
I ALREADY KNEW THAT!! I found this out on June 20.
 
So I asked him about my stage 4 cirrhosis. He said that my biopsy result had not caught up with my medical record yet, but was going to perscribe Pegasys and Ribovarin(sp?), since that would be his next step in treatment anyway.
 
1) If this was the case, why did I have to wait nearly a month to see him to get started.
 
2) How could he not have a copy of my biopsy result, when I had obtained a copy of it 3 weeks ago from HIS OFFICE?
 
He then told me his assistant would be calling me the next day (Aug 3) and counsel me on the treatment, what to expect and discuss the details of self-application. She would be my case-worker so-to-speak. She never called.
 
Today a pharmacy in Orlando called (3 hours away) to tell me they had my perscription was ready for delivery.
 
That was about all the mismanaged healthcare I could handle for one lifetime. Since I am retired military, I called TriCare and requested that I please return to the Naval Hospital as my primary care giver. I told them the entire story. They cited "quality of service" issues and scheduled me an appointment with a doctor at the Naval Hospital this Friday. I may have to start all over, but at least I feel I'll be in better hands.
 
No stress here.

Post Edited (RutRow) : 8/7/2006 11:11:57 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/7/2006 9:24 PM (GMT -7)   
Rutrow, I can totally understand your frustration! I would have told that doc that you obtained a copy of the biopsy report from his office, therefore it must be there--unless they sent you the original they had! I have found that lab reports are the most mismanaged files. I've even found someone else's labs in my chart! (I always take my chart and read it while waiting for the doctor. No, they don't like it, but I have a right to the information.)

Anyway, I hope you will get better care with the naval hospital. I've heard some horror stories about them, too, though.

Best of luck!
Connie

RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 9/16/2009 10:39 PM (GMT -7)   
Thought I'd drop by and update....a lot has happened in the past 3 years.
 
I was transferred to the care of the Naval Hospital and was given a specialists consult to a hepatologists at St. Lukes hospital. He was great. I went on the pegasys/ribovarin treatment for 12 months and beat the dragon! In August 2007 my labs came back with ZERO trace of the HepC virus. Those 12 months on Pegasys was pure hell though. I didn't miss a day of work due to being sick. My 14 days of vacation was eaten up by doctors appts though.
 
At that point, I still had (have) stage 4 cirrhosis and my last visit to my doctor (last consult authorized), he mentioned he would like to have a follow-up upper and lower to check me out. That was the last I heard of it.  Nobody contacted me for the procedure and I got busy with work and felling better, so sort-of procrastinated calling them back...until recently.
 
Of course the Naval Hospital doesn't have a very organized record system, so I scheduled myself a physical and went in a couple weeks ago. I had to brief the internal med Doctor about my history. She scheduled me for all kinds of labs, including 10 viles of blood, urinary and stool samples. They then called me back for MORE blood work.....sheeesh.
 
Anyways...they said my blood sugar was way high, I have too much protein in my blood and some other stuff. They told me I now have type 2 diabetes, so now I get to do the blood meter thingy twice a day and take metformin. They're still evaluating my liver to see what shape it is now in. The second doctor I saw FREAKED!!  He started ranting about it being two years since I had seen a doctor and all. He said a person who has beaten hep c, has stage 4 cirrhosis and now diabetes should be seeing a doctor AT LEAST every 3 months. I promised him I would get better at visiting.
 
Tomorrow I go in for a liver ultrasound and to get vacinated for hep a and b.
 
This diabetes thing is already altering my lifestyle....completely changing my eating habits. Now I'm not suppose to eat anything white, sugar, fatty, fried.....etc. MY WIFE IS ITALIAN and a wonderful cook! I'm scheduled on the 22nd to have Nutritional Classes and will get diabetic training when a class is available. I see Healing Well has a diabetes section, so I guess I'll go check in there. I wish there was a cirrhosis section.
 
To top it all off............I have a teenage daughter and they can be more stressfull than ANY medical condition.  <sigh> 
 
Anyways.....nice to see ya'll again. I hope everyone is doing okay.
 
 
p.s. It was determined that I acquired hep C during bootcamp in the military. It seems the jet gun inoculators were responsible for as many as 2.5 million vets now having hep c. After researching my medical records, initially, when I came into the military, my liver enzymes were normal. A couple years after enlisting, my liver enzymes tripled. I found out that happened to a LOT of vets during that time. 
 

Post Edited (RutRow) : 9/16/2009 11:47:25 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/17/2009 2:49 PM (GMT -7)   

Rutrow!!  So good to hear from you after all this time!  I'm really glad to hear that the combo treatment worked for you.  I sincerely hope that you are still in remission.  As I'm sure you know, there is about a 50% relapse rate.  If the hep C surfaces again, would you be willing to go through treatment again?

Yes, you should be followed at least every 6 mos.  For a long time, I was seen every 3 mos. by my PMD and also by my hepatologist. 

Since you mentioned Orlando and St. Luke's, I put together that you are in Jacksonville (so am I), as so many retired Navy are.  I remember hearing something about veterans having a high incidence of hep C, though I didn't know exactly how they contracted it.  Was the hepatologist you saw at St. Luke's with Mayo?  The Transplant Center that was at St. Luke's is now at Mayo in their new hospital.  It's so nice to have everything in one place and not have to shuttle back and forth between Mayo Clinic and St. Luke's Hospital.  I was/am seen in the Transplant Center although I never had a transplant...but that's where the hepatologists are.

I'm sorry to hear that you have developed diabetes, but you will definitely have a healthier diet!  Diet really is important in liver disease.  Try not to eat beef (it's the most difficult protein for the liver to break down) and eat lots of fresh fruits and veggies.  NO alcohol, of course.  And--lucky you--there are now whole wheat pastas, which you should be able to eat.  ;)

Please do post more often and thanks for bringing us up to date!



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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/17/2009 6:27 PM (GMT -7)   
Hello Rutrow, welcome back and nice to meet you. Your last post was before I joined.

Just as an FYI, this forum isn't just for Hepatitis, it's for any of the liver diseases including Cirrhosis. We now have an educational thread on the front page of our forum at the top. It has a lot of good information about liver disease.

Sorry that you developed diabetes, liver disease creates a whole list of other ailments....diabetes being one of them for some people.

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.


RutRow
New Member


Date Joined Jun 2006
Total Posts : 11
   Posted 9/18/2009 8:57 AM (GMT -7)   
Wow. 50% relapse rate, huh? No, I didn't know that. Is this percentage accurate even if my viral load was down to 0 (zero)? I hope they aren't holding off telling me like the last doctor did.

A couple weeks ago, they initially took 10 viles of blood, then called me back to take some more, so I'm hoping they did a liver panel in all that. Whether or not I would go through that treatment again is uncertain. Probably not.

We'll just see how it goes. I'm not sure what all the ramifications will be pertaining to diabetic, but it's already altering my quality of life. I haven't had any training or counseling yet, but have a Nutrition class scheduled on the 22nd and a Diabetes Education Class scheduled on October 1st. If I stop eating all the things I'm told I can't eat, there isn't very much left to eat. I know I'm having some circulation issues. My blood-sugar is bouncing all over the place. It will be 130 one minute and 253 a few hours later.

Just when you thought it was safe to go back into the water.....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/18/2009 2:14 PM (GMT -7)   

Rutrow, I haven't seen the relapse rates as related to viral loads.  It's just been noted that there is a 50% relapse rate.  Genotypes 1a and 1b, which are the predominant strains in the US, are the most difficult to treat.  But think positive!!

It takes a long time to get blood sugar under control, learn about diet, etc.  The classes you have scheduled will be very helpful to you.  It will work out and be like second nature!  Hang in there!

Hugs,

Connie


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

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