Treatment on Harvoni

New Topic Post Reply Printable Version
66 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 12/31/2015 2:25 PM (GMT -6)   
Hi Mitzi, Happy New Year!

There is a huge difference in my book, on urgency with a MELD score of 8 (almost normal) vs a 26. With 26, many transplant centers would have you at the top of their list

If you post your bloods, I will gladly see what I come up with for your scores. MELD is used for the transplant list. MELD Na will be the new model on Jan. 11th.

So sorry you are having a lack of answers. It is terribly frustrating, isn't it? Since my husband had a biopsy of gradeII stage 4, he has not been given another. Sending you Big Hugs.
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Post Edited (themiz) : 12/31/2015 2:46:27 PM (GMT-7)


mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/4/2016 12:42 PM (GMT -6)   
Hi themiz, Happy New Year to you, too!

Sorry it has taken this long to reply. I was in Naples for the holidays and just flew home last night. I don't have any definitive proof about the grade or stage of Cirrhosis. Only bloodwork, a ct scan that shows, "trace" of ascities.

I appreciate your help. I had to convert several bloodmarkers but will also include the conversions. Here they are:

Total Bilirubin 0.8 mg/dl conversion 13.68 umol/L
Albumin 3.8 g/dl
INR 1.1
Ascities Medically controlled with diuretics
No Encepelopathy
Above for Child Pugh Score

Creatinine 0.70 mg/dl conversion 61.88 umol/L
Bilirubin 0.8 mg/dl conversion to 13.68 umol/L
INR 1.1
Sodium 139 mmol/L
Above for Meld or Meld NA Score

I recently saw a Child Pugh Classification that included the PT. It could have been one that is no longer used. However, my PT is 11.8 seconds. My platelets are at 91,000. That's what I don't understand. The only markers that are not normal are the platelets, and the PT.

I did this four times and my son calculated it also. We both came up with Meld of 8, Meld Na of 7, and Child Pugh Classification class A.

I am sitting here after being handed a very poor prognosis of living 2 years with 50% chance of complications in the next year.

Please let me know what you come up with or any input you may have. I am severely depressed over this. Is my liver so far gone that they are not bothering with a biopsy or fibroscan?

This is what the recent CT Scan stated about my liver: The liver is within limits of normal in size and contiues to demonstrate minimal lobularity suggesting the possibility of cirrhosis. No discrete hepatic mass is noted. There is no intrahepatic ductal dilatation. Previous identified small amount of perihepatic ascites has resolved Then further down on the ct results, it states, Trace ascites is again noted. It also states the mass in my kidney has not changed in size. 2.5 cm solid density mass projecting laterally from the mid right kidney.

Let me know when you can. Very much appreciated. This forum has remained to keep me sane. I thank everyone.
Big Hugs
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1074
   Posted 1/5/2016 11:07 AM (GMT -6)   
hi mitzi22,
you have cleared the virus. you have removed the inflamation that drove your liver damage. portions of your liver can regenerate. im not saying it will, but your dr owes it to you to check EVERYTHING.

i was termed compensated, because my liver was still full function. there were also doubts, because of leg and feet swelling, and digestive problems, and spider nevi on my face and chest. today my liver biopsy is f-1, or 4.5 kpa on fibroscan.
best
barry

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/5/2016 11:50 AM (GMT -6)   
Thanks Barry. I appreciate the input and I agree. Themiz posted that she would do my
meld score and child Pugh if I posted my bloodmarkers, which I have done in post prior to yours. How do I get a message top her, letting her know I have done this? I need some help here before I take proactive steps.oh, and the doctor is stating I am decompensated because of trace of ascities.
Thanks,
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1074
   Posted 1/5/2016 12:50 PM (GMT -6)   
all your values:
creatinine; .7
billi; .08
inr; 1.1
pt11.8
albumin; 3.8
na; 139
are all well within range (normal)
you stated your platelets are 81, low for sure. but your coagulation #s (inr and pt) are normal. what are your platelets post tx.

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/5/2016 3:06 PM (GMT -6)   
Hey, Barry,

Thanks for the input. My platelets are 91,000, still low. According to the reference range, the PT is 9.0 to 11.5. Mine is 11.8. Not much above the norm. What I was asking, was for someone in Healing Well to do my Meld Score and Child Pugh Score. The bloodmarkers I listed were for those two calculations. That is the problem I am having. The hepatologist stated my Meld was 26 and Child Pugh Class B. With these bloodmarkers, I did both and came up with Meld of 8 and Child Pugh Class A. I just had this bloodwork done three weeks ago. The platelets of 91,000 are post treatment. The doctor states I am decompensated because of trace ascites. From my understanding, the liver can regenerate if you are Compensated. I believe I posted this in my thread.

My treatment went well. No problems to speak of. Constipation really bad, and a few minor headaches.
Unfortunately, because I was undetectable without any treatment for so many years and couldn't get treatment because of this. In April of 2014, my viral load jumped from undetectable to 800,000. It elevated significantly in the next year getting approved for treatment. I am posting this to let people know that treatment doesn't stop the progress of Cirrhosis. Or at least it continued to this point for me. And yes, I am frustrated and angry over this. I have been very proactive to no avail. According to the hepatologist, I am at the end of my life. I feel bad, but not bad enough to think I am going to die within the next year. Besides......I haven't lost a pound!!! Still love food.

So in closing, is there someone that can do my Meld Score and Child Pugh Classification?
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/5/2016 3:47 PM (GMT -6)   
Mitzi,

So nice you were able to get away for the holidays. I hope you had a nice break.

I get the same thing you do. MELD 7 MELD Na 8. CP A.

I am not sure why your hepatologist has your MELD at 26. I think I would ask the hepa' to give you the numbers he/she used for that calculation. It looks wrong to me.

You wondered about decompensated vs compensated. If you experience jaundice, ascites, variceal hemorrhage, or hepatic encephalopathy, you are considered to have decompensated cirrhosis.

Was a transplant eval part of your conversation at Shands?

And themister has been decompensated for 6 years. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Post Edited (themiz) : 1/5/2016 3:02:40 PM (GMT-7)


mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/5/2016 4:34 PM (GMT -6)   
Thank you so much, themiz!! I knew I had calculated it correctly when converting the dg/l to umol/L.
You have given me relief and certainty that I am on point.

To answer your question about what he based this on. The fact is all he had in front of him was the CT scan. I posted what it stated concerning my liver. I hadn't had my first labs done so he had nothing much to go by.
However, after leaving me with no hope, telling me I had 2 to 3 years best, with 50% chance of complications within the next year, he called me the next morning and told me he had new information(probably saw that my bloodwork was not that bad), that he presented my case to the transplant team and they would consider eligibility for the waiting list. This was complicated because of RCC in right kidney.

Even though he is at Shands, a little voice is telling me to get a second opinion. I am livid that he would not order a Fibroscan as he stated, "We already know you have cirrhosis." He also based it on trace amount of ascities seen on CT scan. That floored me. I have no idea what stage or grade. Never had any test with exception to the Fibrosure blood test which showed F4, advanced scarring..cirrhosis.

I am one who wants definitive proof. I have been told so many different things by all these doctors. The one I laugh over is," Well, you have been undetected all these years without treatment...your immune system beat the virus. You never have to worry about Hep C." LOL, that was a good one. After 17 years of knowing damage was being done to my liver, I finally got treatment in February of 2015. Unfortunately, it looks like it is too late. The damage is done.

I am a fighter, I just need some help processing this, gaining information so that I can make the right choices in fighting my battle.

Thank you, themiz, for helping me with this. Do you know if you can go from decompensated to compensated?
Big, big hug
Mitzi

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/5/2016 4:41 PM (GMT -6)   
oops....posted twice. Sorry.
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/5/2016 6:45 PM (GMT -6)   
I think a 2nd opinion is a good idea, Mitzi. It can't hurt. You do want to be comfortable with your care team. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1074
   Posted 1/5/2016 7:11 PM (GMT -6)   
I agree, a second opinion is in order. I would be furious.

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/5/2016 9:39 PM (GMT -6)   
Okay, then!!! I knew I could count on my HW team to give sound advice and their objective opinions.

Just curious, Barry. Why would you be furious with my set of circumstances? You know, at times, we all check ourselves to confirm our line of thinking is on point. With my journey, time and time again, I have questioned the medical profession. I have had to stay on top of the doctors, hospitals, insurance, preventing things from falling through the cracks. So, yes, I have a low trust level.

Yes, I do want to know why you would be furious if you were me with what has transpired. I am thinking about the last five years........the only consistent resource and support I have had is through Healing Well and all of you. Of course I have support from my family and friends but they don't understand a lot of it.

Let me know your spin, Barry. I value everyone who takes the time and effort to give me advice, support, and at times humor! Where is Ziffle and David anyway? Ziffle gave me a nickname I have never forgotten. I think he saw a photo. I have seen them cut up many times. I always enjoyed the banter.
Hugs,
Mitzi
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 1/5/2016 10:48 PM (GMT -6)   
I'm around and I gave you a name based on your physical attributes. It's ZelDDa. Stay strong!
nullum beneficium impunitum...

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/5/2016 11:04 PM (GMT -6)   
David, it shows you I have a good memory...it's just short. David!!! That's right, Ziff is the one that retired from the show, Green Acres! LOL.

Does Mike and Karen still stop by?

I promise I won't forget it was you who gave me that nickname..
Big DD hug
Mitzi smilewinkgrin

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1074
   Posted 1/7/2016 5:52 PM (GMT -6)   
hi mitzi,
i also question myself, should i be confronting my dr..and then i see many things that need to be questioned..
 
your liver function #s are good to borderline. so your liver can regenerate.
 
trace ascities??? do you have portal hypertension? have you had a endoscopic checkup?
 
"we know you have cirrhosis"..after successful hep c treatment, a biopsy or fibroscan will show the direction the liver is heading.
 
can one kidney be removed????
 
the language from your recent CT scan does not equate to esld. size and shape are normal. minimal lobularity does not equate to esld..
 
the ascities has resolved and returned..sooo
 
yes, question everything, you already know the answers.
my very best to you
barry
 
 
 

mitzi22
Regular Member


Date Joined May 2011
Total Posts : 197
   Posted 1/7/2016 9:00 PM (GMT -6)   
Barry, thank you so much for the input and advice. My hep Dr stated I most likely have mild portal hypertension as my spleen is enlarged.

He ordered an endoscopy and a colonoscopy. The soonest I could get that scheduled is February 17th. I see my urologist on the 19th.My urologist is going to present my options in removing the tumor in right kidney. It will most likely be a choice of robotic surgery, open surgery, or one of the ablations. I will progress from there and make a choice. The hep Dr.stated I am at high risk for the surgery to remove the KIDNEY tumor because of liver.

At this point I am going to get a second opinion from another hepatologist, probably in Orlando.

It's obvious we are warriors...I will fight this battle I am faced with. Thanks Barry. Any other input or sharing ideas is most welcome. Wish we could have a convention!!
Big hug
MITZI
New Topic Post Reply Printable Version
66 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Friday, October 20, 2017 1:51 PM (GMT -6)
There are a total of 2,884,895 posts in 316,534 threads.
View Active Threads


Who's Online
This forum has 157646 registered members. Please welcome our newest member, JBS2017.
427 Guest(s), 15 Registered Member(s) are currently online.  Details
Crispix, countingstarsx, notsosicklygirl, abb, 07kr5, spouse21, KT233, tennisplayer, JBS2017, Hope4Happiness, Girlie, TxBart, Tim Tam, straydog, What to eat


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer