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Posted 8/5/2012 11:14 PM (GMT 0)
Hello Everyone,

I am so glad to have found this forum. I have been reading thru the posts for a couple of weeks now and have learned so much.  I will try to keep this post as short as I can..lol

In  Oct. 2010 I had elevated liver enzymes from a routine blood test, I tested postive for chronic Hep C.

I was shocked, had no symptons and felt good. I am now 47 and think I have had HepC for 28 years.

I was refered to a Gastro Doc, He ordered a ultrasound which showed FattyLiver and gallstones.  He really just blew me off never talked about biopsy or treatment (never even mentioned that there was treatment options.) Since I was having no problems and lost my health insurance soon after I never followed up or have been back to a Dr since then.

  In May 2011 my Hubby was dx with NonHodgkins Lymphoma and we went thru many. many bad times, But he is finished with chemo and in remission now. I have been feeling bad lately, at first I tried to just blame it on the stress of the last year. But I am now scared it could be liver related.  I never did drink alcohol very much and have not had any since I found out about the HepC, that was about the only thing the Dr stressed to me was no acohol.  I need to do better with my diet as I am overweight and no that I need to lose weight and exercise more.

   Here's the problems I have been having,  The worst thing is Fatigue, I am so tired all the time, no energy at all.  My ankles and sometimes my hands swell, I think I am retaining fluid in my abdomen, when I walk or do much I get short of breath. I also have a ache on my right side under my ribcage , I would not describe it as pain but more a ache that comes and goes.Which really scares me after reading on here about others with HepC and Liver Cancer.  I just feel bad alot, enough that I am ready to see a Dr again.

I have been waiting for the last couple of months to get insurance, and I finally got approved this month. I have been looking online to try and find a good Heptalogist in GA , There are two transplant hospitals here Emory and Peidmont Hospital.  I am really thinking about seeing someone at Emory, I have no idea if I can just make myself an appointment or if I have to have a referral, I do not have a regular GP yet.

  Anyways nice to be able to chat with other people that have the same concerns and fears that I have.  For 2 years my Hubby has kinda been in denial that I have something that could make me really ill, and he has enough stress worrying about his cancer returning, so we dont talk about my HepC much.

I have read alot of peoples post and I am sad for the battles lost and Happy for the victories won.

Thanks for reading

Terri

Posted 8/5/2012 11:47 PM (GMT 0)
Hi Terri, Welcome to the forum.

You have come to the right place as from your reading you know we are a group of patients and caregivers of those affected by liver disease.

My partner has had Hep C since 1970 or 1969 and still has active virus.

And he has been through the Liver Transplant process. IF he didn't get a new liver, he would not be with us now. But he still has a Hep C fight on his hands.

Your symptoms certainly sound like classic Hep C in a more advanced stage, likely with liver damage.

You need to walk, not run, to Emory. You won't know if you need a referral until you call them and get the process started.

Mike got really really sick in 2010 and his GI doc kept saying things like, when you are at the transplant stage, we'll refer you to the center in Miami. Well, heck...he was at deaths door with a MELD Of 24 when we called there and got our own appointment!!!

If you need a referral after all, you can figure it out. With hubby's experience, you know the ropes... The important thing is to get into a program.

They will assess your status, run the right tests, likely order a liver biopsy and scans to see what's is what. They can manage your symptoms with various meds...for edema or ascites, for fluid around the lung, for feelings of confusion, etc. Once you know where you are and what the course of your disease process may be, you can make plans for your own care.

One side effect is often life threatening...the liver can cause hepatic hypertension...pressure on the portal vein out of the liver...which can cause bleeding in the esophagus, stomach or bowel. If you have a bleeding episode, consider it a 911 emergency!!! Docs pretty routinely put their liver patients on BP meds.

At the top of this forum are some Educational Resources that may be helpful...good urls to check out, etc.

Please know that FATIGUE is a major problem with Hep C...most find it increasingly a problem.

Even after transplant, Mike rests twice during the day and heads to bed quite early....as much to rest as to sleep. If we have busy days (doc appointment with long drives) he needs some days to recover. He has not been able to work at his profession for some time. He has decreased cognative function which is difficult to accept. He was once a PC consulant and now we NEED a PC guy to help us out when he is too frurstrated doing the tasks he once helped others do. He also isn't nearly as strong as he once was. He is 62, and so might be slowing down...but no...its the Hep C!

BEst to you Terri, keep in touch, let us know how the phone calls go.

Carol aka MamaLama
Posted 8/6/2012 12:03 AM (GMT 0)
Hi Carol,
Thank you for your quick welcome, I am anxious to have a scan an a biopsy so I hope I can get a appointment soon.

Thanks again
Terri
Posted 8/6/2012 1:33 AM (GMT 0)
Kaos, I also wanted to welcome you. I've had hep C since '68 or '69. It progressed to cirrhosis, liver cancer, and a transplant.

I looked on Emory's web site, but couldn't find a way to to make an appt. yourself. However, you can call them to find out: 404-778-7777 or 1-800-75-EMORY

The first symptom I had was fatigue. Now it's really, really bad. I've had 2 large liver tumors and never had pain or fullness in the rt. lobe, except right after chemoembolization.

I do think you should see a hepatologist, preferably at Emory.

Hugs,
Connie
Posted 8/6/2012 1:55 AM (GMT 0)
Thanks Connie,
I am going to call tomorrow and see what I would have to do to be seen there.

Thanks so much for the welcome and info.

Terri
Posted 8/6/2012 2:49 AM (GMT 0)
Carol and Connie gave you great information. Good luck with Emory.
Posted 8/6/2012 4:49 AM (GMT 0)
Terri
Welcome to the forum. Glad you posted. My 65 year old husband has Hep C, end stage liver disease and has choosen not to get evaluated for a transplant. So we are "bidding time" and trying to make the rest of his life "good quality." I took care of him Feb 2011-Dec 2011, then he spend 6 months in a nursing home and now is back home with me taking care of him.

He, like you, began having fatigue and crashed in Feb 2011 and has never been the same. Mentally, he isn't there most of the time. If there is a way to keep this disease at bay, for you, boy I think you should jump at it. My husband, who traveled the world, as an exotic animal trainer, can't read anymore, can't really use the computer and can't think of the words for simple objects. Couldn't recall what Ham was yesterday. (...and this is with loads of lactalose.)This is not the person I signed marriage vows with...this is a mere shell of a person I knew a long time ago. This disease has certainly done a job on his mind. Good luck and hope you can get treatment and get rid of the Hep C. Welcome and keep posting.
Angie1953
Posted 8/6/2012 3:57 PM (GMT 0)
Angie,
I have been following your posts, I am sorry your Hubby is so sick, and I admire your strength.
Thank you for the welcome.
Terri
Posted 8/6/2012 4:03 PM (GMT 0)
Well I just got off the phone with Emory, I will have to fax them my records for the Drs to review. Since I have not seen a Dr since Oct 2010, I dont know how this will go, The lady I spoke with said Dr Spivey only reviews cases on Wed's and the would contact and make recommedations. I will have to pick up records today and fax. I sure hope they will see me. Thanks for everyones advice.
Terri
Posted 8/6/2012 5:05 PM (GMT 0)
Terr, thanks for updating us! I really hope that Emory will see you.

Hugs,
Connie
Posted 8/6/2012 5:55 PM (GMT 0)
Terri, this is fantastic news...that they will take your records!!!!! I think a great first start for a Monday morning. Keep us posted!

Carol
Posted 8/10/2012 1:46 AM (GMT 0)
Hey kaos66,
I also live in GA and just found out that I have hep c back in June 2012. So this is all new to me. I am 34 and by the grace of god I found a really great dr she's at northside hospital and in Marietta. The first day I saw her she ordered all kinds of blood work, ultra sound, biopsy. Thats taking things in control. Her name is Dr. Christine Bruno but if you click on my name my email address should be on there. Hope everything goes well.

Star
Posted 8/10/2012 2:22 AM (GMT 0)
Kaos, since you haven't been seen since 2010, you will certainly need blood work and scans done. Good luck!

Hugs,
Connie
Posted 8/10/2012 9:43 PM (GMT 0)
Thanks for the info Star and Connie, I have not heard anything from Emory so I quess Monday I will look to make an appointment with another Dr.
Star I am glad you found a Dr you like, I looked at her profile and she seems like she would be a great Dr.

Terri
Posted 8/10/2012 10:08 PM (GMT 0)
Kaos, why not call Emory on Mon. to see if you can get an appt. with them, before finding another doctor?

Hugs,
Connie
Posted 8/10/2012 11:04 PM (GMT 0)
Hi Kaos,
I have family in GA, and from what I have heard from them Emory is the best hospital in the Atlanta area!! There is another candidate on this website, currently living in FL and moving to GA, and listing at Emory for her spouses TP. Just getting started in the process, you have a ways to go, and it is a very bumpy road for you, your loved ones, and caregivers. There is alot of information available in the resource section of this website . . read it, several times . . .it will help you communicate with Dr.'s, it will also help you understand what you are going thru!!

Take good care of yourself . . the healthier you are the bettter recovery you will have!!

Debbie
Posted 8/11/2012 3:11 PM (GMT 0)
Welcome to the forum ...the evaluation process seems long while your waiting , just be patient and choose the best hospital available even if they haven't called back ...the squeeky wheel gets the oil ..:. Everyone here is great , helpful and we have all lived and delt with issue first hand . My husband recieved a transplant Sept 2011 , and is doing well . He cannot work and do all the things he did before transplant but he makes steps every day in a postive direction . He was 40 at transplant so he has a young age on his side ...we have hit many bumps in the road but we have just Hung on tight .....it is a long ..and life changing process but well worth it ! Keep us posted .....Danelle
Posted 9/21/2012 2:07 AM (GMT 0)

Hi Everyone,

Here's my update, I had my first appt. at Emory Liver Clinic, I really liked my Dr. (yeah!)

She ordered blood work, 15 vials..lol  The Dr called yesterday with some of my results

Hep C type 1 , viral load 388,000. Liver Enzymes slightly elevated, She did say that my Ferrin was very low, and to start on a iron supplement. I am scheduled for a MRI this Saturday and then she will schedule a liver biopsy. I am so glad to finally have a game plan. Terri

Posted 9/21/2012 2:16 AM (GMT 0)
Terri, I'm very glad to hear that you were able to get in Emory! BTW, it's ferritin (iron.) Please do keep us updated on your progress. You are in very good hands.

Hugs,
Connie
Posted 9/21/2012 2:26 AM (GMT 0)

Thanks Connie

You would think as much as I have googled Low Ferritin Levels, I could remeber how to spell it.lol

It seems strange from what I have read for it to be low, seems most often with liver disease its high.

Thanks again Terri

Posted 9/21/2012 3:11 AM (GMT 0)
Good going! Even with great docs, you will need to be your own best advocate. Be well.
Posted 9/21/2012 3:18 AM (GMT 0)
Thank you David, I agree with you 100% about being your on advocate. I think you receive better care when the Dr's feel you are somewhat educated on your condition.
Terri
Posted 9/21/2012 5:01 AM (GMT 0)
way to go Terri... great job getting on top of things!!! Sandia
Posted 9/28/2012 3:43 PM (GMT 0)
I am still waiting for the Dr. to call with the results of the MRI I had last Sat. How long does this usually take, I am really concerned about the results. Thanks Everybody Terri
Posted 9/28/2012 3:53 PM (GMT 0)
Emory, there in Atlanta is a very good hospital and I have heard alot of good things about their Liver Clinics!! Good Luck!!

Debbie
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