Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I am ignorant about any of this. Want to hep support him any way I can. Dealing with my own illnesses and disability, but want to do what I can. he is not good with communication with Docs, questions to ask, understanding the answers, gets misinformation, or misunderstands info he receives.
The one thing I will be asking his doc at appt. tomorrow is what are these blisters all over his hands and up toward elbow. His understanding is that it is called P.C.T., & it has to do with too much iron in his system, the body is attempting to get rid of it? These blisters itch I think, they are blood blisters, pop and hurt like hell. I don't know if he even has this info correct. He tries but is slow intellectually with this stuff.
Any one know what this P.C.T. stands for? I put in into the DS group system and it brought me to this group,so I assume it is correct that it is part of the Hep C experience for all or some? I have posted here b4 but I have been ill and haven't gotten back to see what you all may have replied to try to help me. I am so sorry about that. I struggle with being at the computer and have to make the time I sit here count. I began a journal entry for the web sites you guys find for help & info. It looked Like Henery?? was posting a lot of info sites?? I will try to back through old posts to find what all you have posted for site with info on all this. Anyone here in Utah with specific info for our wonderful medical & coverage system here would be greatly appreciated, and any Federal help or programs besides the disability procedure, well... and that too... when do they consider it a disabling disease, a certain stage? 1,2,3,4. And if they wait until late stages for disability acceptance, how will that help his chances at beating this thing....?
Docs aren't addressing his other illness well either which is chronic pain. I think they profile people here with negative stereo types and don't even consider the possibility that someone may really be in pain. Most docs seem to run like you've got the plague and they will die if u breathe on them when ask for help with legit pain issues. Hep C is not the only illness he is struggling with. Insurance here for single adult and working poor is called PCN Primary Care Network. It pays for nothing. Sometimes emergency situations will be covered, but he's already getting bills for the specialty needs, like the biopsy and other testing... GOD.... HELP! Americans need to be able to have access to health care which is affordable, not this stuff that says you have coverage & it looks good on paper, but the real deal is the poor & middle class ( if there is a middle class left somewhere) can't even afford to use it to see the doc or pick up a medication it supposedly covers. I have been disabled for 6 yrs now and struggled with illnesses for 20 plus yrs before they disabled me. I would not be disabled today if I had ever had access to healthcare. If not preventable, it would have been manageable . okay I have sat here too long.. Need break. I will try to check in b4 I go with him to this primary care doc appt tomorrow to see if anyone has any suggestions. Thank you in advance & looking forward to getting to know all of you. I am with other DS support groups for my own illness, so I know how awesome this place is. I would never have survived my experiences if not for the informative, compassionate, and loving people here, most sick and struggling, yet helping each other with all we got!
In the Spirit of Love Light Truth, & Service
"Stubborn TerrieAnn" / ralop
The one thing I will be asking his doc at appt. tomorrow is what are these blisters all over his hands and up toward elbow. His understanding is that it is called P.C.T., & it has to do with too much iron in his system, the body is attempting to get rid of it? These blisters itch I think, they are blood blisters, pop and hurt like hell. I don't know if he even has this info correct. He tries but is slow intellectually with this stuff.
Any one know what this P.C.T. stands for? I put in into the DS group system and it brought me to this group,so I assume it is correct that it is part of the Hep C experience for all or some? I have posted here b4 but I have been ill and haven't gotten back to see what you all may have replied to try to help me. I am so sorry about that. I struggle with being at the computer and have to make the time I sit here count. I began a journal entry for the web sites you guys find for help & info. It looked Like Henery?? was posting a lot of info sites?? I will try to back through old posts to find what all you have posted for site with info on all this. Anyone here in Utah with specific info for our wonderful medical & coverage system here would be greatly appreciated, and any Federal help or programs besides the disability procedure, well... and that too... when do they consider it a disabling disease, a certain stage? 1,2,3,4. And if they wait until late stages for disability acceptance, how will that help his chances at beating this thing....?
Docs aren't addressing his other illness well either which is chronic pain. I think they profile people here with negative stereo types and don't even consider the possibility that someone may really be in pain. Most docs seem to run like you've got the plague and they will die if u breathe on them when ask for help with legit pain issues. Hep C is not the only illness he is struggling with. Insurance here for single adult and working poor is called PCN Primary Care Network. It pays for nothing. Sometimes emergency situations will be covered, but he's already getting bills for the specialty needs, like the biopsy and other testing... GOD.... HELP! Americans need to be able to have access to health care which is affordable, not this stuff that says you have coverage & it looks good on paper, but the real deal is the poor & middle class ( if there is a middle class left somewhere) can't even afford to use it to see the doc or pick up a medication it supposedly covers. I have been disabled for 6 yrs now and struggled with illnesses for 20 plus yrs before they disabled me. I would not be disabled today if I had ever had access to healthcare. If not preventable, it would have been manageable . okay I have sat here too long.. Need break. I will try to check in b4 I go with him to this primary care doc appt tomorrow to see if anyone has any suggestions. Thank you in advance & looking forward to getting to know all of you. I am with other DS support groups for my own illness, so I know how awesome this place is. I would never have survived my experiences if not for the informative, compassionate, and loving people here, most sick and struggling, yet helping each other with all we got!
In the Spirit of Love Light Truth, & Service
"Stubborn TerrieAnn" / ralop
There are reasons not to treat the HCV infection before treating the PCT.
http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/PCT
PCT is the most treatable of the porphyrias. Treatment seems to be equally effective in familial and non-familial PCT. Factors that tend to activate the disease should be removed. The most widely recommended treatment is a schedule of repeated phlebotomies (removal of blood), with the aim of reducing iron in the liver. This actually reduces iron stores throughout the body. Usually, removal of only 5 to 6 pints of blood (one pint every one to two weeks) is sufficient, which indicates that iron stores are not excessively increased in most PCT patients. The best guides to response are measurements of serum ferritin and plasma porphyrins. Phlebotomies are stopped when the ferritin falls to - ~20ng/ml. Another treatment approach is a regimen of low doses of either chloroquine (125mg twice weekly) or hydroxychloroquine (100mg twice weekly). Usual dosages of these drugs should not be used because they can cause transient but sometimes severe liver damage and worsening of photosensitivity in PCT patients.
I hope this helps, good luck to you & your brother.