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Hepatitis C Living with it, inside prison and out in the world.

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  #26  
Old 06-10-2013, 04:27 PM
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The results are in! All of them. I had many tests done. The tests were to determine how advanced the disease is and to determine whether or not I have cirrhosis. If there is cirrhosis, Interferon will not work.

I do not have cirrhosis, ascites, portal hypertension or an enlarged spleen. Even the liver itself is not enlarged, just very out of shape literally from all the scarring. My liver function is nearly normal. So, the director of the transplant team wants to hold off on Interferon based treatment. I am strong enough to wait for the new medication which will hopefully be FDA approved in December.

I am posting this because so many inmates have this disease and so many family members want treatment. I think I have been a member long enough to have gained the confidence of many and the trust of most of you. Treatment is not for every patient. In my case, he felt that the horrible side effects compared to the small benefit did not justify treatment.

Treatment is always a benefit to risk analysis and in my case, the risk outweighs any possible benefit. The disease is advanced but stable so he wants to wait for the better treatment that is not yet available. I was relieved. He will repeat labs in December.

It's important to know that although I am not a transplant patient, the doctors on the transplant team are the doctors who are the experts with this disease. It is a brutal reality that there is way too much incorrect information out there. Only a hepatologist understands this disease. And they do not write for WebMD.com!

The gross mis-use of Motrin and other NSAIDS has led to the erosion of my esophagus! That is actually the bigger problem. Erosions that are large and deep. I had no symptoms and had no idea that my esophagus was being corroded by Motrin and similar medications. Fortunately, this is treatable. I can never take those meds again, and I have to tell you that the prisons use and abuse Motrin like it's candy. Again, I say find a hepatologist for your loved one with Hep C
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  #27  
Old 06-10-2013, 04:44 PM
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Linda, that is really a wonderful update. And now, how are you feeling physically? Is your body seconding the test results?
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Old 06-10-2013, 05:14 PM
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Well, apart from being easily tired, I do not feel too bad. The exhaustion is a big hurdle. I am lucky though because my son is very sweet and close by. He and his GF came over yesterday and cooked breakfast for all of us so I was able to just relax. My future DIL is doing most of the unpacking and she is walking King when I feel wiped out.

I do wish that I had more energy but that is manageable. I am just very pleased to have such a wonderful team of doctors at Mayo Clinic and a great family to help.
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Old 06-10-2013, 09:32 PM
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I am so happy you are hanging in there and things are looking good. Also thanks for the info as always. A friend was saying something recently about some new treatment but I wasn't sure. You have alot of good kharma coming your way and your son and daughter are lucky to have you.
Take care.
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Old 06-12-2013, 05:15 PM
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I am so happy to hear this. It gives us all hope thank you for your update.
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Old 06-29-2013, 08:28 PM
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I hope and pray God heals your body, I'm so sorry this happen to you. I know your a strong woman your occupation and the things you say shows your strength you keep that strength and faith things are gonna work out they been working out and they will God is always right on time with things.
Best wishes to you and I'm here if you want to talk
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Old 06-29-2013, 08:45 PM
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That sounds like great news!!
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Old 07-04-2013, 11:30 AM
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Quote:
Originally Posted by only1love View Post
The results are in! All of them. I had many tests done. The tests were to determine how advanced the disease is and to determine whether or not I have cirrhosis. If there is cirrhosis, Interferon will not work.

I do not have cirrhosis, ascites, portal hypertension or an enlarged spleen. Even the liver itself is not enlarged, just very out of shape literally from all the scarring. My liver function is nearly normal. So, the director of the transplant team wants to hold off on Interferon based treatment. I am strong enough to wait for the new medication which will hopefully be FDA approved in December.

I am posting this because so many inmates have this disease and so many family members want treatment. I think I have been a member long enough to have gained the confidence of many and the trust of most of you. Treatment is not for every patient. In my case, he felt that the horrible side effects compared to the small benefit did not justify treatment.

Treatment is always a benefit to risk analysis and in my case, the risk outweighs any possible benefit. The disease is advanced but stable so he wants to wait for the better treatment that is not yet available. I was relieved. He will repeat labs in December.

It's important to know that although I am not a transplant patient, the doctors on the transplant team are the doctors who are the experts with this disease. It is a brutal reality that there is way too much incorrect information out there. Only a hepatologist understands this disease. And they do not write for WebMD.com!

The gross mis-use of Motrin and other NSAIDS has led to the erosion of my esophagus! That is actually the bigger problem. Erosions that are large and deep. I had no symptoms and had no idea that my esophagus was being corroded by Motrin and similar medications. Fortunately, this is treatable. I can never take those meds again, and I have to tell you that the prisons use and abuse Motrin like it's candy. Again, I say find a hepatologist for your loved one with Hep C

Thank you for the updates Linda and thanks even more for your concern about our (Inmate) Loved Ones who may very well be getting Motrin and other NSAIDS on a frequent basis simply b/c they are relatively cheap and handed out freely for EVERYTHING from head and toothaches, cramps, sprains and yada yada...Your courage, concern and expertice is admirable.
When my Honey Bunny was in TDC he dealt with Colon Cancer, had major surgery and did 7 months of Chemo followed by 30 days in 30 days of Radiation Therapy. I have his Medical Records now that he is home and I discovered he was perscribed Motrin q 4-6 hrs. prn pain whenever he was asked and said his pain was < than *5* on a scale of 1-10. He says the pain was NEVER less than an 8 but he was ALWAYS given Motrin before they would allow him to get his Morphine an hour or so later. Now that I'm reading about YOUR condition I am REALLY PISSED OFF! Who knows what damage they may have done to his body which was already compromised ??? He has an excellent Oncology Team here from the University of Texas now; most of the MD's I know from work and we talk often but I also know there are many other former (and current) Inmates who are NOT as fortunate and blessed as we are.
Best Wishes to you Linda, you are in our prayers...Marcia
p.s.....I wanted to add I'm also a Reg. Nurse and if there is ANYTHING I can do for you just p.m. me here and consider it DONE. Blessings
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  #34  
Old 07-04-2013, 04:06 PM
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Sounds like great news Linda! I'm glad you're going to be able to wait for the treatment rather than go through the transplant. Hopefully it'll be approved by the year's end!
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Old 07-04-2013, 04:19 PM
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Quote:
Originally Posted by only1love
Well, apart from being easily tired, I do not feel too bad. The exhaustion is a big hurdle. I am lucky though because my son is very sweet and close by. He and his GF came over yesterday and cooked breakfast for all of us so I was able to just relax. My future DIL is doing most of the unpacking and she is walking King when I feel wiped out.

I do wish that I had more energy but that is manageable. I am just very pleased to have such a wonderful team of doctors at Mayo Clinic and a great family to help.
thank u for posting my husband was just diagnosed with hep c. so this gives me hope. by the time he was taken from the prison to a outside hospital he was really sick. its been 5wks and he is starting to feel a little better.
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Old 07-25-2013, 09:29 PM
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I hope everyone who is battling hep c and other health issues in and out of prison find this information useful. I am a compounding pharmacy technician. I make patient specific medications. In short make several medications from pure raw chemicals many of which are pain medications and have a certain strength that is not commercially available. As a compounding technician I have learned that there are many different forms a medication can be turned into. For those who suffer from severe nausea and dizziness there was a compound that was a mixture of compazine and meclizine topical gel for those who cannot tolerate oral medications and that is just one of many options available through compounding pharmacies. Some options for those with impaired liver and kidney functions a compounding pharmacy can make several different type of pain medications as well as medications to treat several different health problems in a topical cream or gel that is applied to the skin so it does not pass through the kidneys as well as liver and if it is a medication that has the possibility to pass through these organs it is very minimal. Compounding is not a very widely know skill that some pharmacies have but can be very beneficial for some patients. My pharmacy specializes in veterinary, bio-identical hormones, as well as pain management compounds. I have worked in a pharmacy that was contracted with several hospices (end stage dying patients) that we did a huge variety of medications compounded to ease the pain. Anyways I just wanted to let you guys know that there is several options available although I know prison dotors would not consider using this specialized methods but if your doctor is willing to consider some options he can check into compounding medications. Compounding pharmacies can also make troches, lozenges, lollipops, tablets,capsules, suspensions, creams, gels pretty much anything. Sterile and non-sterile compounding pharmacies can make pretty much anything that is stable in which ever type of form you can think of. I hope this information may be helpful to some of you especially if you are battling hep c. By the way my step-father has lived with hep c since Vietnam so I know how important it can be to have information about all different types of options when it comes to impaired liver and kidney functions. Feel free to inbox me with any questions that I may help with. I too have loved ones in prison as well.
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  #37  
Old 07-26-2013, 05:22 AM
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It's nice to hear that your tests came back so encouraging and that you may be able to get the new treatment that seems to show such promise.
I hope continue to get good news.
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Old 11-10-2013, 12:13 AM
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Quote:
Originally Posted by only1love View Post
Well, apart from being easily tired, I do not feel too bad. The exhaustion is a big hurdle. I am lucky though because my son is very sweet and close by. He and his GF came over yesterday and cooked breakfast for all of us so I was able to just relax. My future DIL is doing most of the unpacking and she is walking King when I feel wiped out.

I do wish that I had more energy but that is manageable. I am just very pleased to have such a wonderful team of doctors at Mayo Clinic and a great family to help.

Only1love you are awesome! I have read many of your posts and have seen what a great help you are to others. I am so, so sorry that you are sick. I hope that your health has improved.

Thank you for just being you. I don't know what else to say to you. If my wishes could could come true then I wish that you are well and have the life you deserve! You are the finest. I also wish I knew why shit happens to great people. Makes me very sad.
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  #39  
Old 11-20-2013, 01:44 PM
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Thank you for your kind words. It happened to me at work. I was giving a blood transfusion to a post operative patient who had open heart surgery. He needed 2 units of blood, but we only had access to one unit. That unit of blood came from the Red Cross and not our in-house blood bank.

No one told us that we needed a special adaptor for our IV tubing. I set up the tubing like I had been doing for years, and when I poked the bag of blood, it exploded in my face and my eyes. It was the eye contamination because the blood vessels in the eye are so near the surface and I learned later that contact lens wearers, like myself, always have scratches on the cornea- some mild, some serious but when an entire bag of contaminated blood explodes in your eyes, the size of the corneal abrasion doesn't really matter.

Also found out after the fact that back then, the Red Cross, unlike our in-house blood bank did not test for Hepatitis. The bag was from a contaminated donor. If the patient had received that blood, it would have killed him! He would not have survived the infection, so if it had to be someone, better it should be me.

Now after years of arguing with the CDC, goggles are now required. I am not crazy about the CDC. They are too slow and often have inaccurate information, but I fought like crazy so that other nurses and doctors would have protection for their eyes! That battle took 7 long years and in the meantime, many surgeons, nurses and medics were similarly contaminated. I hate that fact and hope that someday, the safety of the medical professionals will one day be as important as the safety of construction workers. We have a LONG way to go to get there.
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