Medical Forum / Diseases and Disorders / Hepatitis / April 2007
The VA is going to treat me, Finally
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g - 28 Mar 2007 00:10 GMT Went to see the BCLD Friday and She finally agreed to get me started on the treatment. This is how it is going down On Friday, after she agreed to the treatment, she sent me to the Lab for all kinds of upgraded bloodwork. Today I get a letter stating I am to see a Psychiatrist on the 6th of April, and when I checked into the VA Health site, there has been an entry into my prescription page for Peginteferon ALFA 2B 150MCG?0.5 Ml SYR. Does anyone have any idea what is going down, and does it happen this fast after waiting almost 2 years? I'm already confused and havn't had the first shot yet ANy Thoughts, Ideas or encouragment appreciated. Glenn In Kansas City, Mo
greyhackles - 28 Mar 2007 03:11 GMT >Went to see the BCLD Friday and She finally agreed to get me started on the >treatment. [quoted text clipped - 10 lines] >Glenn >In Kansas City, Mo Whoa! I say WHOA there, son! Take a deeeeep breath....exhale slowly....there ya go....
Ok, so you've been waiting for 2 years to get treated through the VA, and now that your doc has pulled the trigger, you're excited. I'd say that's a good thing! It'll likely still be a month from today before you take your first injection, so you should have time to get your stuff in order.
You'll be on Peg-Intron, Schering-Plough's brand of pegylated interferon. It'll show up in half-milliter syringe kits, one for each Friday night for 24 or 48 weeks - see next paragraph. You'll also be eating two handfuls of Ribavirin daily - somewhere between 800 milligrams and 1600 milligrams total per day.
Which brings us to genotype: do you know yours? If you are genotype 1 or 4, you're in for a 48 week long ride on the therapy train. If you are g2 or g3, you only have to take the 24 week ride.
You're seeing a shrink because underlying depression can get magnified big-time while on therapy. This can almost always be countered with anti-depressants, and some docs will put you on the anti-Ds two or more weeks before you get your HCV meds, just to give the anti-Ds a head start (bad pun).
You've probably heard a lot about side effects from treatment. Well, some folks cruise through their entire course of therapy with no major issues, while others battle just to get through each day.
It's a genetic crap shoot where you end up in the spectrum of possibilities - just as it's pretty much a genetic crap shoot whether your immune system can beat the crap out of the virus before it has a chance to mutate and thus evade your attack.
As far as the machinations of the VA health system, I have zero knowledge of such matters, but there are others here that are well-versed in "How The VA Works - Or Doesn't" that may chime in. On the up-side, you've made it through enough of the bureaucracy to get within reach of treatment :-)
So, things to do while you're waiting for the train:
Get a dental check up. If you have any issues they can be treated before you get onto therapy, which can cause low white blood cell counts which in turn can allow a lurking infection go bananas. Easier fixed before than after.
Get your eyes examined, with particular attention paid to the retinas.
Your hair may start growing out much thinner, drier, and prone to breakage while you're on therapy. Don't panic, it'll all go back to normal within 6 months of completing the drug regimen. You can try fighting back with shampoos recommended for chemo-heads like Nioxin - start using it before you start the combo drugs - and using a silk pillowcase, using a soft brush instead of combs, etc, but start thinking about a shorter hair style ;-)
Start lining up your support team, the family and friends that will be impacted by you being on treatment. You'll likely be leaning on them from time to time.
As for encouragement, hook yourself to a support group - like this one - and you'll get all the support you can handle. Ask any question you can think of, someone will be along to help...
Cheers
/greyhackles
Terry - 28 Mar 2007 05:14 GMT >Went to see the BCLD Friday and She finally agreed to get me started on the >treatment. [quoted text clipped - 10 lines] >Glenn >In Kansas City, Mo Get your eyes checked. I am 48 and it is time to start loosing my eye site, but I noticed my eyes going bad during the first go at treatment. They are still getting worse.
I know that old age does this too, but it is listed as a side effect. Ask your doc.
Guy - 28 Mar 2007 18:46 GMT > >Went to see the BCLD Friday and She finally agreed to get me started on the > >treatment. [quoted text clipped - 17 lines] > I know that old age does this too, but it is listed as a side effect. > Ask your doc. Damn, that's one thing I didn't do was get a Dental checkup and I have a toothache lurking, oh well.
BTW, listen to this guy ( greyhackles ) he knows what he's talking about. And Elmo has a fantastic sense of humor which is needed while your on the meds. I am wrapping up my second month already and as it has not been fun it has been let's say tolerable. Like greyhackles said " It's a crapshoot ".
Hang in there and read the posts in here, there is a lot of good information and the TX veterans are always willing to help in any way they can. I work nights so this is my support group as far as I am concerned and they have been extremely helpful.
g - 29 Mar 2007 11:47 GMT Thanks Folk for the encouraging words. I had my Dental work completed about a year ago. If they give me problems now, I'll put em in a cup outtasite.
Eyes were checked and new specks about 6 months so maybe I can talk my guide on this journey into recommending another check up before this starts.
Fully expect to lose my hair. Been growin a ponytail for about a year so I can make a drastic change when it starts to go. Also been Using Nioxxin recently in case it don't fall out.
Since I will be going through this pretty much alone, most of the time, have made arrangements to store guns and such at a relatives house, except when hunting or shooting with friends.
Will go back and take suggestions as to what to keep in the Fridge and Pantry when the time comes.
Now that the decision has been made to move forward. Am relaxed and good with the idea, and only a little afraid,
I Thank all that answered and have helped by letting me lurk in the Background. Its been a large help in getting my head wrapped around this THING. Glenn In Kansas City, Mo
>> >Went to see the BCLD Friday and She finally agreed to get me started on >> >the [quoted text clipped - 37 lines] > I work nights so this is my support group as far as I am concerned and > they have been extremely helpful. Gordo Mondragon - 30 Mar 2007 20:30 GMT > Thanks Folk for the encouraging words. > I had my Dental work completed about a year ago. If they give me problems [quoted text clipped - 6 lines] > can make a drastic change when it starts to go. Also been Using Nioxxin > recently in case it don't fall out. I think it's more that your hair gets thinner than that it falls out. Mine is short, sort of curly, and I was the only one who noticed it.
Another thing to try to keep up with is not letting your skin dry out too much. Smearing on unscented lotion after you shower will prevent getting dry spots, scabs, weird flaky stuff.
> Since I will be going through this pretty much alone, most of the time, have > made arrangements to store guns and such at a relatives house, except when > hunting or shooting with friends. > > Will go back and take suggestions as to what to keep in the Fridge and > Pantry when the time comes. You will hopefully have an easy time of it but it wouldn't be a bad idea to have a plan for if you start to feel really bad off. Telling some people what's going on and getting them to agree to help if you call and say "I need food" or "my house is a mess and I can't clean" without worrying about having to explain anything could be a good thing.
I found that solving problems got really difficult for me.
I also learned to keep my mouth shut and my friends knew if I was acting pissed off not to think I was mad at them. "Mad at the dirt" was the codephrase we used.
Gordo
greyhackles - 30 Mar 2007 22:47 GMT >> Thanks Folk for the encouraging words. >> I had my Dental work completed about a year ago. If they give me problems [quoted text clipped - 34 lines] > >Gordo Should one arrive at that point in therapy where even thinking about most foods provokes a wave of nausea, the well-advised patient - who got his/her teeth fixed before getting on the therapy train - will be able to enjoy ice cream at any hour of the day, should said patient like ice cream.
I, on the other hand, being dentalphobic until recently, even after being advised to get the teeth cleaned and any caries fixed up before that first shot, had become so sensitive to cold that only room-temperature or warmer liquids could be safely approached, lest truly exquisite pain be provoked.
Man, that was a bitch. Even worse was reading Elmo repeating his "eat some ice cream!" mantra all the time ;-)
He's right, of course, but the mantra can only be successful if the ice cream doesn't nearly kill your brain on the way in...
Cheers
/greyhackles
elmoemerson@webtv.net - 01 Apr 2007 15:29 GMT Re: The VA is going to treat me, Finally Group: alt.support.hepatitis-c Date: Wed, Mar 28, 2007, 10:46am (CDT-2) From: phxazhepc@cox.net (Guy) On Mar 27, 10:11 pm, Terry <Kilow...@charter.net> wrote: On Tue, 27 Mar 2007 18:10:53 -0500, "g" <drdig...@sbcglobal.net> wrote: Went to see the BCLD Friday and She finally agreed to get me started on the treatment. This is how it is going down On Friday, after she agreed to the treatment, she sent me to the Lab for all kinds of upgraded bloodwork. Today I get a letter stating I am to see a Psychiatrist on the 6th of April, and when I checked into the VA Health site, there has been an entry into my prescription page for Peginteferon ALFA 2B 150MCG?0.5 Ml SYR. Does anyone have any idea what is going down, and does it happen this fast after waiting almost 2 years? I'm already confused and havn't had the first shot yet ANy Thoughts, Ideas or encouragment appreciated. Glenn In Kansas City, Mo Get your eyes checked. I am 48 and it is time to start loosing my eye site, but I noticed my eyes going bad during the first go at treatment. They are still getting worse. I know that old age does this too, but it is listed as a side effect. Ask your doc. Damn, that's one thing I didn't do was get a Dental checkup and I have a toothache lurking, oh well. BTW, listen to this guy ( greyhackles ) he knows what he's talking about. And Elmo has a fantastic sense of humor which is needed while your on the meds. I am wrapping up my second month already and as it has not been fun it has been let's say tolerable. Like greyhackles said " It's a crapshoot ". Hang in there and read the posts in here, there is a lot of good information and the TX veterans are always willing to help in any way they can. I work nights so this is my support group as far as I am concerned and they have been extremely helpful. //////////// I could have sworn that I was the smart one and that Grey was the jokester. :-) elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
greyhackles - 01 Apr 2007 19:24 GMT >Re: The VA is going to treat me, Finally > [quoted text clipped - 38 lines] >jokester. :-) >elmo ahahahahahaha!
Be all you can be, elmo ;-)
/greyhackles (I'll pick up the slack :-)
elmoemerson@webtv.net - 04 Apr 2007 13:01 GMT Re: The VA is going to treat me, Finally Group: alt.support.hepatitis-c Date: Sun, Apr 1, 2007, 2:20pm From: greyhackles@NOSPAMyahoo.com (greyhackles) Re: The VA is going to treat me, Finally Group: alt.support.hepatitis-c Date: Wed, Mar 28, 2007, 10:46am (CDT-2) From: phxazhepc@cox.net (Guy) On Mar 27, 10:11 pm, Terry <Kilow...@charter.net> wrote: On Tue, 27 Mar 2007 18:10:53 -0500, "g" <drdig...@sbcglobal.net> wrote: Went to see the BCLD Friday and She finally agreed to get me started on the treatment. This is how it is going down On Friday, after she agreed to the treatment, she sent me to the Lab for all kinds of upgraded bloodwork. Today I get a letter stating I am to see a Psychiatrist on the 6th of April, and when I checked into the VA Health site, there has been an entry into my prescription page for Peginteferon ALFA 2B 150MCG?0.5 Ml SYR. Does anyone have any idea what is going down, and does it happen this fast after waiting almost 2 years? I'm already confused and havn't had the first shot yet ANy Thoughts, Ideas or encouragment appreciated. Glenn In Kansas City, Mo Get your eyes checked. I am 48 and it is time to start loosing my eye site, but I noticed my eyes going bad during the first go at treatment. They are still getting worse. I know that old age does this too, but it is listed as a side effect. Ask your doc. Damn, that's one thing I didn't do was get a Dental checkup and I have a toothache lurking, oh well. BTW, listen to this guy ( greyhackles ) he knows what he's talking about. And Elmo has a fantastic sense of humor which is needed while your on the meds. I am wrapping up my second month already and as it has not been fun it has been let's say tolerable. Like greyhackles said " It's a crapshoot ". Hang in there and read the posts in here, there is a lot of good information and the TX veterans are always willing to help in any way they can. I work nights so this is my support group as far as I am concerned and they have been extremely helpful. //////////// I could have sworn that I was the smart one and that Grey was the jokester. :-) elmo ahahahahahaha! Be all you can be, elmo ;-) /greyhackles (I'll pick up the slack :-) /////// That's too much pressure, Grey. :-) ahahahahahahaha!! elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 28 Mar 2007 13:04 GMT As long as you stand on the shrink's desk and yell 'KILL KILL", you should get your meds. :-) In the past couple of years, my experience with the VA has been pretty good, overall. Are you seeing a specialist? You'll do fine, Glenn. Relax. elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Kozure Ookami - 30 Mar 2007 02:06 GMT >Went to see the BCLD Friday and She finally agreed to get me started on the >treatment. [quoted text clipped - 10 lines] >Glenn >In Kansas City, Mo I did my tx through the VA also. But it only took about 3-4 months to get on tx. Got my psych eval, ultrasound, skipped the biopsy because of a hemangioma on my liver and being a Genotype 2. One thing though was I never spoke to a doctor throughout treatment. A certified Physician's Assistant was it for me which was typical at the VA Great Lakes facility in Illinois. Did you have take a little written psychiatric profile that asked depression related questions and stuff like have you ever had "suicidal ideations". I think telling them you have had "suicidal ideations" will pretty much kill your chances of getting on tx with them. They don't take kindly to recent drug and/or alcohol abuse. Good luck.
Don
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