New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

DonDon1
New Member


Date Joined May 2006
Total Posts : 6
   Posted 6/4/2006 1:29 AM (GMT -7)   
Hi
 
I am after some information, as u can see from my previous post my dad has a hiv/hepc coinfection - i beleive that these teo diseses are appearing together more often my dad has a realy high (to me ) counts his viral load 338,000 and cd4 is 302. He has a lot of symptoms burning feet, fatigue short term memory loss, itchy flaky skin, loss of appetite,lumps in his neck and aching joints. Can anyone give a rough estimate to how advanced this may be. You see the doctors are not very informative and is very distant and inpersonal and has not really given me any information, everything i have learned about these disease's i have found out thru my own research and when at the appointments i ask questions i get fobbed off - he either goes into a long speech which i do not understand or shuts off and aims a question at my dad with out replying to me.
 
What i mean do any of these symptoms mean it could of developed into cirrious. My dad believes he has months not years to live, he says he can tell his own body, so he is probably in more pin than he lets on.
 
Also is there anything i can do whilst he is not on any treatment to help relieve some of these symptom (vitamins,suplements or alternative therapies)
 
Please Please can anyone give me any information.
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/4/2006 12:48 PM (GMT -7)   
DonDon1, why is your dad not on any type of treatment if he has HIV and hep C? He should be receiving treatment for both. If he has cirrhosis, he may not qualify for hep C treatment. Is the doctor you describe a hepatologist or infectious disease doc? Is it possible to change doctors? You and your dad should be asking lots of questions, and it is your right to receive answers.

Good luck!
Connie

DonDon1
New Member


Date Joined May 2006
Total Posts : 6
   Posted 6/5/2006 2:35 PM (GMT -7)   

Hi Connie

Thanks for your reply! I dont know what the Dr is he is a conultant at the GU Clinic. He just keeps saying that they need to do tests, at the last appointment I had to ask why they were not being treated yet, his reply was they needed to do more tests, i said but you can treat the hepc, but he says more tests, he could not even provide my dad a nicorette patch, as he thimks my dad has hardenng of the atteries an must give up smoking NOW, but the thing is the diseses are not aloud to be spoken about to my dad, i think he is in some sort of denial. These things that he ha got to do are so hard for him smoking, drinking, drugs (canabis) they have been with him since childhood, but he has also used needles, and i dont know if it is cause of my feelings about all these suprises, but i think the Dr does not really care, just sees as some more cash on his books, as he has not pushed counciling or any sort of help and it is obvious he needs some proffesional help, but he is not listening, this has been goin on for 3 months nearly and still no clearer, how can he come to terms with it and start to sot his life out when the doctor don't give a toss. So i dont know what the next step should be i am going thelinic again next Tuesday, i am going to take a list of medications for each and i want full explainsion if he is not started on anything, so far he has had some vitamins but i had to ask him about that, and when i mentioned if there where any supplements he could take he smirked.

I just dont get a very good vibe from him!!!

 

Thanks again for your reply


Lil Miss Kathy
New Member


Date Joined Jun 2006
Total Posts : 17
   Posted 7/14/2006 5:30 PM (GMT -7)   
Hello Connie,
     I was asking the same question about my case. I dont understand why they arent doing regular treatments, when I asked my Drs. they just told me because the medications i would be taking would do more harm than good, I'm on disability, and have time and medical coverage now to treat it but they still say no. Does this make sense to anyone? Is there something I dont understand?  I've tried looking the drugs up myself but I dont understand the words they use. I just want to know if anyone else is being not treated by medicine either, or if i'm the only one. My Auto immune hep was drug induced they said adding more drugs might cause me to loose the liver that is still good, or worse even than that might take other organs too. If you understand something I dont please tell me. Thank you for your time.
                                                          lil_miss_Kathy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/14/2006 9:09 PM (GMT -7)   
DonDon, it definitely sounds as though your dad's doc is judgmental and has no use for drug/alcohol users/abusers, especially if still using. I have gotten that reaction to my hep C from medical professionals, even though my drug use ended in '69. I had a dentist refuse to treat me. I've also had the condescending docs. If at all possible, change doctors!! The only test needed is a blood test. Kathy, same advice to you about changing docs. Don, I don't have any personal experience with HIV, so don't want to offer any advice or suggestions, except to try to find an infectious disease doc and hepatologist for your dad. However, if he is resistent to treatment, that is his right. In addition, if he is still drinking, he cannot get hep C treatment. Kathy, I'm really not sure about HCV treatment for autoimmune diseases, so you really need a hepatologist!

Wish I could help more. Bottom line is DON'T SETTLE FOR POOR TREATMENT, AND GET YOUR QUESTIONS ANSWERED.

Connie

Lil Miss Kathy
New Member


Date Joined Jun 2006
Total Posts : 17
   Posted 7/14/2006 11:04 PM (GMT -7)   
Dear Connie,
     Thank you for your reply. Just one thing I don't understand what is a hepitologist exactly? I have not heard of that be4. I have seen a Dr. Macashland at the University of Nebraska Medical Centers Liver transplant Center in Omaha. Maybe hes one. But, he is in agreement with the Drs. at Internal Medicine here in Grand Island. No treatment except diet at this time. Maybe if I knew what a hepitologist was I could find one. Thank you again for your time. hugsss
 
                                                   Lil_miss_Kathy

SusieQ2006
Regular Member


Date Joined Jul 2006
Total Posts : 23
   Posted 7/25/2006 2:30 PM (GMT -7)   

Kathy, a hepatologist is a gastroenterologist with extra training in the liver. They are usually found in academic centers.

 

Don, you dad's viral load is not high if that is his hep C load. Unlike with HIV, the viral load in HCV is not prognostic. It just tells you that the person has chronic hepatitis. Approximately 30% of HIV patients are co-infected with HCV and in fact, they are dying from that rather than HIV since the HIV drugs cocktails have become so good. Unless your dad has uncompensated cirrhosis, he can be treated with interferon unless there are other medical problems you are unaware of. They symptoms you describe are not necessarily indicators of cirrhosis.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/25/2006 4:14 PM (GMT -7)   
Susie, thanks for answering these posts. I had not come back to them lately. I agree with your statements, except that you might add no HCV treatment if still actively drinking alcohol or using drugs.

What is uncompensated cirrhosis? One has it, but has no symptoms and it doesn't cause any problems? Aside from biopsy, what tests would determine if one has cirrhosis? MRI or CT scan?

Connie

SusieQ2006
Regular Member


Date Joined Jul 2006
Total Posts : 23
   Posted 7/25/2006 4:24 PM (GMT -7)   
Hi Connie. Good idea to add the no drinking, etc. Thanks for the reminder.
 
Actually the word is decompensated not uncompensated.....brainfog, sorry. Decompensated cirrhosis means that the liver can no longer do it's jobs. There are 3 stages to cirrhosis. Child's class A, B and C. For Child's class A, the person's liver is compensating for all the scarring. It is still doing it's jobs well enough for the person to be relatively well.  Child's class B & C, the liver is beginning to fail. The symptoms of that can be ascites (fluid in belly), hepatitic encephalopathy (ammonia affecting the brain), jaundice, lack of clotting factors, bleeding varices (especially in the esophagus).
 
I have cirrhosis, Child's Class A,  and my ultrasound and CT scans look relatively good. A biopsy is really the only way to tell for sure if a person is cirrhotic. Also, with cirrhosis there is usually lowered platelets, and possibly a low red and white cell count. When the person is decompensating, the serum albumin will fall below normal....but that is late in the disease.
 
I hope this helps to explain cirrhosis a bit better.
 
Susie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/25/2006 8:30 PM (GMT -7)   
Thanks, Susie!

C.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 11:46 AM (GMT -7)
There are a total of 2,733,056 posts in 301,078 threads.
View Active Threads


Who's Online
This forum has 151231 registered members. Please welcome our newest member, safikul.
353 Guest(s), 11 Registered Member(s) are currently online.  Details
countess18, tickbite666, Huddie, iho, pmm73, NewDay, The king, hatter15, julymorning, Sissy63, Graytech


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

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer