Aa
I have questions!
My husband saw the nurse practitionar today. We actually thought we were going to be there to order the meds and see the film and learn how to give the shots. Turns out we saw the np who had a person with her following her around for training. She came bouncing in asking if we decided to treat? Well, we decided a month ago when you asked us that, so why ask us again. We had questions and she answered them:
1. Explain the stages and grades. She told us last time that without a bx he can't have that her guessestmate was stage 2/3. I asked her if that was considered fribroses then.
a. No, he's beyond fribrosis and into cirrosis. Grade and stage or basically the same thing.
2. What about his platelets being low? 112,000. What if they drop, can something be done?
a. If they drop 50% they'll stop treatment and they will drop but as soon as they drop and you go off treatment they'll go back up. Can't take anything for low platelets. Anemia, can't really do anything about that.
3. What about Procrit if his blood platelets get low? No can't take that. If your blood is anemic it can't make platelets.
4. Can he relapse after a period of time?
a. Absolutely not! Once it's clear, it's clear. You can get re infected and it would come back a different genotype but it's not called a relapse. That is impossible.
5. What about people that get it back after so long?
a. Then they went back to their old ways.
6. How will we know if the treatment is working?
a. After 4 months if his v/l drops half then we know it's working and he'll do 48 weeks. If not we'll take him off treatment and try something else. But when he's off treatment it'll return with a vengenance.
7. Asked about new treatment in 09.
a. Actually a new drug is coming out soon she says. An HIV drug they'll add to this treatment. But she can't remember the name of it. But it won't make s/x better, it's just another drug they're going to try with these drugs.
Of course she said other things I can't really remember right now but those are the most important ones. He'll be taking Peg-Intron 120 mcg 0.4 ml under the skin every week. And, Rebetol 200 mg: 3 am and 3 pm. She said this time, that she is optomistic about his treatment working because he has a low viral load, which I thought didn't mean anything from what she said last time. Don't know if I'm really liking this person. She seemed a little show offy in front of the person that was with her. My husband noticed it too. She said he could take vitamin C but stay away from vitamins with ADEand K. And anything with ginger in it. But to eat anything he wants. But due to paperwork and ordering the meds, looks like it won't be until Nov. before we get to start treatment.
Am I misunderstanding her about his platelets and the relapse thing?
1. Explain the stages and grades. She told us last time that without a bx he can't have that her guessestmate was stage 2/3. I asked her if that was considered fribroses then.
a. No, he's beyond fribrosis and into cirrosis. Grade and stage or basically the same thing.
2. What about his platelets being low? 112,000. What if they drop, can something be done?
a. If they drop 50% they'll stop treatment and they will drop but as soon as they drop and you go off treatment they'll go back up. Can't take anything for low platelets. Anemia, can't really do anything about that.
3. What about Procrit if his blood platelets get low? No can't take that. If your blood is anemic it can't make platelets.
4. Can he relapse after a period of time?
a. Absolutely not! Once it's clear, it's clear. You can get re infected and it would come back a different genotype but it's not called a relapse. That is impossible.
5. What about people that get it back after so long?
a. Then they went back to their old ways.
6. How will we know if the treatment is working?
a. After 4 months if his v/l drops half then we know it's working and he'll do 48 weeks. If not we'll take him off treatment and try something else. But when he's off treatment it'll return with a vengenance.
7. Asked about new treatment in 09.
a. Actually a new drug is coming out soon she says. An HIV drug they'll add to this treatment. But she can't remember the name of it. But it won't make s/x better, it's just another drug they're going to try with these drugs.
Of course she said other things I can't really remember right now but those are the most important ones. He'll be taking Peg-Intron 120 mcg 0.4 ml under the skin every week. And, Rebetol 200 mg: 3 am and 3 pm. She said this time, that she is optomistic about his treatment working because he has a low viral load, which I thought didn't mean anything from what she said last time. Don't know if I'm really liking this person. She seemed a little show offy in front of the person that was with her. My husband noticed it too. She said he could take vitamin C but stay away from vitamins with ADEand K. And anything with ginger in it. But to eat anything he wants. But due to paperwork and ordering the meds, looks like it won't be until Nov. before we get to start treatment.
Am I misunderstanding her about his platelets and the relapse thing?
That's the trouble I'm having now. This is a niversity affiliated hospital. There is another one that is an hour away from us. I'm going to try to get him an appt. for that one tomorrow. This one is so unorganized and we are new to all this and it's pretty confusing at times. We've always paid for our own medical bills but this is just too expensive to pay out of pocket so we have to rely on help to get it done. But, we'll be fine. Thank you for your concern. Hope you are doing well.
Without insurance, your best bets would be at a university affiliated hospital. And if you live in an area where such institutions don't exist, it may be worth traveling a few hours to get the care your husband deserves. Most large hospitals have social workers who can help you with applying for assistance. Best of luck. I know this must be very tough for you.
I had my biopsy with a 103, I have had a history of low platelets for at least ten years now. I know where you are and feel your pain, I am living the hindsight reality myself. I have had so many markers to tell me to look further into what was going wrong with me for years and never took the time, chalked it all up to "life". I have only my home left pretty much too and my insurance, and thankfully a big life insurance policy that cannot be cancelled. I have just one daughter (16) and she is what keeps me going, "going" in a way I would have never dreamed, but everyday above ground is a good one. Have you filed for SSDI, I am fighting that battle now. I waited until I really, really needed it and then found out what it means to try and get anything done with social security is like having a root canal. I do not know how old you guys are, me I'm 50 going on 123, so I have paid in plenty, its now just a matter of fighting and paying a lawyer to get a little back to keep my home and try to get well enough to treat again if possible. If you have a computer in your home, try to read is my advice, you can find many ways to help him with this tool. Ask nicely for everything at a charity hospital and pay attention to everything you see and hear. I know many good clinical professionals out there and have worked at not for profit hospitals who have some great ones, so keep your spirits up and try to get help from any rescource available, it is a battle and so full of mazes, but you can manage, you are lucky to have each other right, don't ever forget the value in that. drink water, watch the diet, look it up on your computer.
Regards, thinking the good thoughts for you both
Lani
Regards, thinking the good thoughts for you both
Lani
Thank you for your post. My husband didn't have a biopsy due to low blood platelets, so she is guessing at his stage which she said was between 2 and 3. He doesn't have insurance and we are relying on the commitment to care program for his meds. This is a charity hospital and saying they aren't organized is an understatement. I am currently trying to find a hepatologist for him to see and will be calling one on Monday. He has one in the hosp. and he seemed like a good one the few times we saw him but he sent us to her after he dx'd him and we aren't scheduled to see him until Nov. Trying to get an appt sooner is almost nil. This is what happens when you can't afford the insurance. The insurance we had on him a few years back we had to drop due to it going up in cost at least $75.00 a year. And when it reached $800.00 a month we had to drop it. I wish we would have checked his liver back then but he was hardly ever sick and never had to have blood work when he did use it. Shoulda, coulda, woulda, lol.
I was in healthcare until 2005 emergengy nursing, then a PA, then into Geriatrics. It is unfortunate that more AMericans do not understand the lack of clinical care in this country. the numbers are beyond comprehension. between 44k-98k people die every year because of healthcare NOT what they were diagnosed with, but medical errors. That is a reported number, not the real number in my opinion, if you read up on the statistical facts on the danger of going to hospital you would never enter the doors. There is such a shortage of healthcare professionals that colleges and technical programs are throwing them into the field with no real understanding of some basic math and anatomy and physiology. I hope you call everyone you can about this. It might save a life in the long run, for if she is communicating this type of information to you, then she might also have a lack of training in pharmacology and really hurt someone. Do not fool yourself to think that ALL doctor's take the time to review their clinical staff assessments it does not happen. Many are just trying to catch up adding compters to their record keeping and the errors in this are not miniscule by any means. Get all records from every practioner you see request copies. It is the only way, look up your clinical diagnoses yourself, and if a ding bat tells you something you know is wrong FIRE THEM. It's your life you be the DONALD TRUMP ;) I had a hard time in my field for many years due to the client load and lack of empathy that is a standard part of how the healthcare worker becomes. And the money is so good, you can be a crappy anything and go to work in any city in the world, so you be Donald Trump many times over. did you say you have had you liver biopsy? If so I would read it well. The pathology in that report is important to know where you are. Please excuse the spelling errors, I was writing to fast, but hope the point is clear. Copyman is correct. If you have an HMO or insurance, you can call and tell them you were treated incorrectly and this goes on their record and the insurance will contact the Doctor and let them know, these are not letters taken with a grain of salt by the Doctor who has hired this staff member.
This is why I am so glad I found this forum. I've learned so much just reading all the posts. Things I never even wanted to know. I'm just glad there are people in the world willing to put their lives out there for others to learn from.
Consider yourself lucky that you knew she was full of sh*t. I guarantee you that most wouldn't know the difference. I don't think I would have before I started treating.
-- Jim
-- Jim
Yes, I was pretty accurate. Still have my mouth open dragging the floor. Lol. I was so hoping she couldn't be that bad. The first visit didn't set too well with us and the second one was even worse.
If you accurately reported the answers from your NP, I would run as fast as I can to another doctor's office -- preferably a liver specialist (hepatologist).
-- Jim
-- Jim
i believe the commitment to care prog is good for one year no matter what doc treats you. i may be thinking of pegasist which i'm sure does it. so you should be able to carry it to the new doc.
Make sure to go with "Redipen Strength Peg-Intron-120 mcg, 0.5 ml. and for the Rebetol 200 mg capsules 3 in the morning and 3 in the evening" and you will do fine.
What I'm reading on the paper they gave me is: Redipen Strength Peg-Intron-120 mcg, 0.5 ml. and for the Rebetol 200 mg capsules 3 in the morning and 3 in the evening. He weighs 167 pounds. Of course on the other paper it says 0.4 ml under the skin every week. So, I really don't know why one says one thing and the other says the other.
The original post says 200 mg twice a day. At his weight the dose should be 1000 or 1200 mg per day.
If he took 120 mcg 0.4ml PegIntron that would actually equal a total of 96 mcg only. But just by turning the dial up to a full 0.5 ml he would get 120 mcg. I increased my interferon 6 weeks ago because of weight gain during tx from 100 mcg to 120 mcg. No difference in sx or white blood cell counts. Especially at start of tx you want to be sure that you are getting weight based dosing.
Looking at the prescription copy she gave me is a litte confusing. On one paper it reads. 0.5 ml. But on the Commitment to Care paper they gave us it read 0.4. Looks like the 0.4 was scratched out and someone mis read which one it was. He weighs 167 pounds.
I'm in Louisiana. You'd think we'd have better care here, but I'm sure we do. I just haven't found it yet.
We are supposed to be getting our meds through the Commitment to Care program. I would assume other Charity Hosps would have that. Seems there was a mix up on if I was supposed to go to SS or Medicare for a denial letter that they said they have to have. Good idea about the new post. I will try that.
I'm in Louisiana. You'd think we'd have better care here, but I'm sure we do. I just haven't found it yet.
We are supposed to be getting our meds through the Commitment to Care program. I would assume other Charity Hosps would have that. Seems there was a mix up on if I was supposed to go to SS or Medicare for a denial letter that they said they have to have. Good idea about the new post. I will try that.
are you in the States? If so - wow, thought they had the "cutting edge" on HCV treatment - That NP could take some lessons from mine...
"He'll be taking Peg-Intron 120 mcg 0.4 ml under the skin every week. And, Rebetol 200 mg: 3 am and 3 pm."
In case you are not going to switch doctors, I would like to ask about the dosage your husband is going to get. May I ask how much he weighs? The reason I ask is because I wonder about his PegIntron dose. You say "120 mcg 0.4 ml", which means that the dial on the readypen will not be turned up to 0.5 ml which is full amount. I weigh 165 lbs and I get 120 mcg 0.5 ml. The 1200 mg Rebetol your husband is getting suggests to me that he weighs more than 165 lbs, and thus he should get the same amount of PegIntron as I do.
Concerning low baseline viral load: The SVR rate for those with a baseline viral load below 400'000 IU/ml is greater than for those with higher viral load - 70% compared to 50%. Many more with low baseline viral load reach RVR at week 4, this is one major reason for the better SVR results.
Here is a link about low viral load:
http://www.hivandhepatitis.com/2006icr/aasld/docs/103106_d.html
In case you are not going to switch doctors, I would like to ask about the dosage your husband is going to get. May I ask how much he weighs? The reason I ask is because I wonder about his PegIntron dose. You say "120 mcg 0.4 ml", which means that the dial on the readypen will not be turned up to 0.5 ml which is full amount. I weigh 165 lbs and I get 120 mcg 0.5 ml. The 1200 mg Rebetol your husband is getting suggests to me that he weighs more than 165 lbs, and thus he should get the same amount of PegIntron as I do.
Concerning low baseline viral load: The SVR rate for those with a baseline viral load below 400'000 IU/ml is greater than for those with higher viral load - 70% compared to 50%. Many more with low baseline viral load reach RVR at week 4, this is one major reason for the better SVR results.
Here is a link about low viral load:
http://www.hivandhepatitis.com/2006icr/aasld/docs/103106_d.html
You should pose the question about where else to go in Lousiana, on a new post. Same thing for HCH's questions.
hitherdither: I am in California. I don't have health insurance. I was able to get my meds for free through Peggassist. I also have received excellent care from the reknown Gish group and CPMC, which has a charity care program.
What you can do is phone any universities or liver clinics, hospitals, in your area and ask specifically for a heptalogist who is famialr with HCV. You could also consider doing a clinical trail. Ask if they have any charity care programs. While talking on the phone to a Quest ( lbs) employee, I found out that they have a program to help those who are unable to pay. These programs exist but you have to ask about them.
Also try going to hivandhepatitis dot com Good luck.
hitherdither: I am in California. I don't have health insurance. I was able to get my meds for free through Peggassist. I also have received excellent care from the reknown Gish group and CPMC, which has a charity care program.
What you can do is phone any universities or liver clinics, hospitals, in your area and ask specifically for a heptalogist who is famialr with HCV. You could also consider doing a clinical trail. Ask if they have any charity care programs. While talking on the phone to a Quest ( lbs) employee, I found out that they have a program to help those who are unable to pay. These programs exist but you have to ask about them.
Also try going to hivandhepatitis dot com Good luck.
ARE there vitamins that should be avoided? Have any of you been denied SS Disability? My hubby cannot work and we are going to apply for disability.
Sorry you are getting a lot of wrong information from the NP. I'm glad you are seeking a hepatologist. I switched after 11 weeks when my Viral Load went up. Now I have Dr. Gish one of the best hepatologist in the world.
When your hubby starts tx he needs to drink a lot of water. Also, take fat with Ribavirin or he could get nausea or even vomit. I lost 17 lbs. on tx. I finished 2 weeks ago. I would take 8 almonds after my cereal in the a.m. then take my riba pills. And after dinner I had ice cream with my riba pills. It is weight based therapy so after I lost 14 pounds the nurses said I could take one less pill. Keep copies of all your labs. On the standing order the doctor needs to write copy to patient in the upper right hand corner of the lab sheet. I always keep the latest on top.
Your husband is so fortunate to have such a wonderful, caring wife to help him. I wish him the best of luck with the tx.
When your hubby starts tx he needs to drink a lot of water. Also, take fat with Ribavirin or he could get nausea or even vomit. I lost 17 lbs. on tx. I finished 2 weeks ago. I would take 8 almonds after my cereal in the a.m. then take my riba pills. And after dinner I had ice cream with my riba pills. It is weight based therapy so after I lost 14 pounds the nurses said I could take one less pill. Keep copies of all your labs. On the standing order the doctor needs to write copy to patient in the upper right hand corner of the lab sheet. I always keep the latest on top.
Your husband is so fortunate to have such a wonderful, caring wife to help him. I wish him the best of luck with the tx.
I've been tested and was negative. My H. said her saying that is very dangerous because I could clean up one of his blood spills believing her and get infected, especially if I have an open wound also. It's really funny because since I've been on this forum trying to learn everything I can about this, I seemed to know more than she did and could have contradicted her several times. She said she's been doing this for 7 years and she also treats HIV pts. I'm so glad I found this forum because if not I nor my husband would even be questioning anything. And that's a shame because I'm sure there are so many people out there that just take the first word they hear as gospel.
We are in Louisiana. Trouble is, we have no insurance on my husband and this is a state run hosp. for low income on no income people and my H is getting the meds for free. After being sent to the SS office to be denied for disability, was told by the pharmacy that we needed to be denied from Medicade, then was told by the NP that SS and Medicade are the same thing. So, we are really confused. This not the first incidence in this hosp. We've had blood work lost, been sent to the wrong side of the hosp. to be told no, you needed to go somewhere else, had paperwork given to one person and was told it wasn't her department and she didn't know what it was, then went back to the person that gave it to us and from there who knows. Bad taste in our mouths all around.
So, where else in Louisiana could we go?
Copyman, Lol. we love the Quacktitionar name. Lol. I hope she's not sleeping with the doctor because, eeww, he would need his head examined. Lol.
We are in Louisiana. Trouble is, we have no insurance on my husband and this is a state run hosp. for low income on no income people and my H is getting the meds for free. After being sent to the SS office to be denied for disability, was told by the pharmacy that we needed to be denied from Medicade, then was told by the NP that SS and Medicade are the same thing. So, we are really confused. This not the first incidence in this hosp. We've had blood work lost, been sent to the wrong side of the hosp. to be told no, you needed to go somewhere else, had paperwork given to one person and was told it wasn't her department and she didn't know what it was, then went back to the person that gave it to us and from there who knows. Bad taste in our mouths all around.
So, where else in Louisiana could we go?
Copyman, Lol. we love the Quacktitionar name. Lol. I hope she's not sleeping with the doctor because, eeww, he would need his head examined. Lol.
LOL, another wrong statement:
"Oh and another thing she said when asked about me being exposed to my H.s blood that hep c doesn't live in blood spills more than a few minutes at a time. That's why it took so long for sceintist to find out what it was because it wouldn't live on the slides for very long for them to determine what it was"
Quite the opposite, HCV is one of the only viruses that can live outside the body for days and even weeks!!!
and as far as you getting this from your husband the chances are very slim. there have been many people that have been with their spouses for 25+ years and never passed it to them. the odds are so low that the CDC does not recommend even using protection during sex. their is more of a chance of pasiing it by sharing razors, toothbrushes, ets. you should still get tested for ease of mind.
after some thought the only way that this nurse QUACKtitionar can be in the position that she is in, she has to be sleeping with the doctor! i see no other way she could get away with this! LOL
Please tell us what state you are in so i can avoid treating there just in case.
"Oh and another thing she said when asked about me being exposed to my H.s blood that hep c doesn't live in blood spills more than a few minutes at a time. That's why it took so long for sceintist to find out what it was because it wouldn't live on the slides for very long for them to determine what it was"
Quite the opposite, HCV is one of the only viruses that can live outside the body for days and even weeks!!!
and as far as you getting this from your husband the chances are very slim. there have been many people that have been with their spouses for 25+ years and never passed it to them. the odds are so low that the CDC does not recommend even using protection during sex. their is more of a chance of pasiing it by sharing razors, toothbrushes, ets. you should still get tested for ease of mind.
after some thought the only way that this nurse QUACKtitionar can be in the position that she is in, she has to be sleeping with the doctor! i see no other way she could get away with this! LOL
Please tell us what state you are in so i can avoid treating there just in case.
Oh and another thing she said when asked about me being exposed to my H.s blood that hep c doesn't live in blood spills more than a few minutes at a time. That's why it took so long for sceintist to find out what it was because it wouldn't live on the slides for very long for them to determine what it was. Ok. going to bed now.....
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