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Avatar universal

Finally did what I had to to get referred and Dr. won't see me

I am very very frightened.  Had my viral load done quite a while ago, many mos.  wa over 7 million, subtype 2b
Went to primary care physician who's in a reidency program, they're sporadically vacinating me against hep a and b.
Ex. gave me vacinne 4 mos ago, (made me make and keep 3 consecutive monthly apts before they'd refer me, I did that, keeping my last appt last friday even tho I was sicker  than a dog w/flu (or is it side effects of hep c...got it in 2005)
While sitting forever in exam room I'm reading material on hep a and b which they said would be easier to contract if one has hep c (never did bloodwork for hep a and b,only vacinnated me), learned from handout that it's a series of shots, the vaccines and had to ASK for the second of three.  I was seen by resident and dr., gave me an appt for 6 mos., never mentioned the 3rd of the series of vaccines for hep a or b.  (But why vaccinate me againswt something that I may have, again they never did bloodwork for either).  I had to ask them to check my viral load, they just did routine b.work when I went to them for help in beginning.  They call today, I'm thinking with an appointment for the GI dr.  NO, the GI Dr....a group of Dr's.  won't see me until I have bloodwork done, so the Residency program is mailing me b.work today, the day i go for it I am to call them to make another appontment.  I feel like my hands are tied and I have no where to turn.  I do not feel well many days, alot of stomach discomfort,, fatigue and the residency program knows this.
Is this unusual?  Does anyone know what I could do?  I'm literally afraid for my life!!
15 Responses
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179856 tn?1333547362
Cindy,

I have been in your boat and have been on suboxone for many years now.  The choices are limited and I have to come to work every day - withdrawl is just not an option for me at the moment and might not really ever be.  Just so you know.......people do understand :)

One good thing about treatment is the entire 72 weeks I was on it I never got one virus.  That is the great thing about taking antivirals - you won't get them most likely :D

Your viral load fluctuates not only on a monthly basis but a daily basis. The only time it really really matters is during treatment so you can see how quickly you are killing off the virus and if it is on target to show the meds are working for you.

Dont worry about your hair - it wont ALL fall out like you see in chemo patients........more likely if anything you'll lose some of it but not ALL of it and it does grow back - fast, faster than normal for some reason!
I lost alot but it was because I was on treatment AND i had thyroid problems so it fell out more than normal but I went and got a bunch of wigs and played dress up with them and made it kind of fun. Every day a different color or style or length (everyone here at work thought I was on chemo so they didn't think anything of it).

I guess I'm trying to say everything you are really worried about is manageable for most. It is only the very very rare occasion that it's not.

You'll be just fine.

Helpful - 0
Avatar universal
Great news Cindy. I am glad things are proceeding. It's only natural to be apprehensive about treatment starting. I thought you had insurance that would cover your treatment or most of it.

I know you have heard many times that your viral load is only important in relation to how well you are doing in treatment and that it can vary enormously. Many people have had much higher viral loads then you do and treated successfully. Try to stop worrying that your viral load correlates to how you are feeling.

Take care and good luck,
- Dave
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Avatar universal
You've already received the best advice on here just wanted to speak on you mentioning the possibility of losing your hair. I'm 9 months post treatment, & am a hairstylist. I had think straight hair & lost it! I was devastated of course, but it grew back thick & CURLY!!!! It is better now than before treatment!!! Not to say that happens with everyone, just my experience. There's always silver linings if we just look! Good Luck to you!!!
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Avatar universal
AND EVERYONE ELSE.....the GI dr. called...is going to  treat me...sending me for more bloodwork, to detect liver, belly cancer, eg....the initial bloodwork he sent me for was 1/2 decent...my viral load (and I know i don't really understand this BUT) it came down frm 7 million to 4 million...wow,  didn't know that was possible, thought it only went higher.

I'm scared...nurse told me Dr. wants patients to take injection on Fridays.  Worried about cost, getting off darvocet/percocet.  What an idiot I am.....have another really bad flu.  Would like to go to ER but I've beenn playing the pain Dr.  (Stupid addict)....she keeps asking me if i have liver disease and  I tell her no.  I do have alot of back, leg nerve damage pain but ....still no excuse.  Was on suboxone program before  but really don't wanna go down that road again.  Thanks to all who answered.  

I guess that's good, that my viral load decreased.....I can't imagine feeling sicker than I do right now and I know with this treatment I probably will...Not much to look forward to.  Thanks, guys.....waiting for my husband to bring me belly medicine (OTC).  Cindy
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Avatar universal
I was told that anyone with liver disease should be vaccinated against Hep A/B regardless of risk level. Apparently, either infection in the presence of chronic liver disease can be extremely damaging to the organ.

Hence, they don't want to take any chances. That's my understanding from my hepa.
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862235 tn?1336060295
You've already learned an important lesson....This Site Rocks!
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Avatar universal
Thank you all for so much information (you guys are truly better than any Dr.....at the residency program, I've often seen different ones, ever was)  I thank you for all of this very important information and for easing my mind.  I just felt so horrible, having kept all of my appts, being a 'good girl" and then havng them tell me the GI may not treat me.  I am so happy for this forum, and someone knowledgable to turn to.  I'll do it, go for this bloodwork, go back to Scranton temple for another appt and pray that the best, although the tmt scares the heck out of me and being a woman, I really don't wanna lose my hair (but just read a post that the poor woman was so sick at that point, it didn't matter)..the best would be that i cuold receive treatment.  And get it over with.  Since the nurse mentioned all kinds of liver bloodwork, most of which I've never heard of, possibly they will not do a biopsy.  That would be a small comfort, as I understand you have to be awake during it and I'm the kinda person that could literally pass out while having bloodwork done.  ever since my roommate/boyfriends's triple by pass surgery last summer, prior to which his m.d. finally puthim on a statin for wildly fluctuating cholesterol x over 20  years (no meds in the meamwhile), I had read 2 books on cholesterol written by cardiologists, as a result of my  new found knowledge, I of course went to the Dr.s appt w/him as his last cholsterol reading was over 400 (very high). The dr. was sending him on his way w/prescription and that is when I asked if an MRI/or stress test would be in order.  'Oh, that's not a bad idea, we can do a stress test"....it saved his life, showed that all arteries to heart were between 80-90%
blocked.  They said he would have taken a massive heart attack w/in a month had he not had the stress test/surgery done.  So now you know why I have a bad taste for dr.s in this area.  Thank you all again, I will be patient and do what I'm told.  Will keep in touch w/all of yu wonderful people and hope you are...will exercise on my bike, eat better, do everything you guys suggested.  Thanks!!!     Spectda:  I love the Office...just started watching it over the past year but I think iti's so funny.  You can see some of Scranton's landmark's in the opening!  I hope you are stll well, as well as all of  you who answered, I hope you are all in "good places".  i will visit more often, have been too anxious and was kinda  using the avoidance technique over these past 4 mos....but I've learned here more than I'd probably learned anywhere else.  God bless you all!  cindy
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Avatar universal
by the way Cindy. I love the office. Scranton rocks!
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96938 tn?1189799858
I took a look at some of your prior posts.  Chucles is right, being a geno 2 the GI may not suggest a biopsy but as NYG suggests a biopsy is a good idea for all genos.  The biospy result is probably the most important part of a treatment decison (treat or wait). I also noticed that you have a weight problem and blood sugar issues (pre-diabetic).  These two items might also come into discussion with the GI because they can possibly impact treatment response.  So it might be a good idea to try to keep an eye on your diet and maybe get out and get at least some light (like walking) exercise on your bones.  Little things that might not seem connected but can make a difference in the long run.
As for the doc wanting you to show that you can keep appointments is actually a good idea.  Having a chronic disease generally means that you need to keep continual attention to the condition and espcially when it comes to matters like HCV treatment.  So, the doc is trying to force a committment in you and get you familar with keeping medically on track.

Nothing will be fast with HCV and patience is more than a virture, it's a necessity.
Helpful - 0
179856 tn?1333547362
No it's not as normal a part as for geno 1 but either way I'd sure want one if possible so I would know the details and whether or not I truly needed to start right away or if I was stage 0 or 1 had time to wait and see what happens in the next few years.  Since something else will most likely kill you anyways if she was relatively newly infected / low damage level it would make sense to not rush into anything.

These meds are no fun as you know.
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862235 tn?1336060295
My hepatologist tells me that for type 2 hepatitis a thorough ultrasound and the usual complete blood work is all that is really necessary to get a good idea of the liver damage. A biopsy is not part of the normal diagnostic protocol for type 2 patients. She tellsme this is in the guidelines for SOc in Canada. The link below supports this in most cases as the biopsy will not greatly affect the course of treatment.

http://www.hcvadvocate.org/hcsp/articles/Keeffe-1.html
Helpful - 0
87972 tn?1322661239
Good stuff from FlGuy, as usual, Cindy. Yes, I remember you :o).

Again, at this point it doesn’t make much difference if your viral load is 500 or 500 million; either way, it tells us you have HCV. It might be important in other diseases, but not with this one.

Your mental confusion, fatigue and other issues could be a result of HCV; or it might be due to other causes… things like depression and anxiety as a result of diagnosis can be responsible for those symptoms as well, Cindy.

Again, patience is important. If they felt you had very significant liver damage (which can often be ascertained from common blood tests), I’m sure they’d act accordingly and move things along more quickly. As it stands, take a deep breath, be compliant with your appointments, and go with the flow.

Good luck, and let us know how things go—

Bill
Helpful - 0
96938 tn?1189799858
Getting all those tests before you see the GI is normal.  With the results already in hand the GI can have an informed conversation with you.  At that point he'll know if you have a chronic infection, genotype, viral load and current liver panel results.  At this point you are on a normal path and that's good.  During the first appointment he'll examine you; thump your abdomen, probably discuss a biopsy and try to get some history to try to pinpoint length of infection, check hands-eyes-ankles.  This first appointment will not be the last and you will probably not arrive at any treatment decisions.  So, you might expect him to schedule a biopsy and maybe an endo scope and/or colon scope.  That stuff is all OK because it will give the doc a full picture.  

Make sure if you need to go back to the GI a second time (most likely) that you already have your refferral to him in place in case this first referral expires or is good for one visit only.  
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Avatar universal
Thanks, I can always count on you, it's Cindy...don't know if you remember me, my computer got all these viruses and i was using my real name like an idiot anyway.  You're always right there Bill, for everyone, and for me that means the world
I just called my primary dr. back and they told me that the GI dr. wants all these liver tests, viral load, subtype, (no mention of biopsy, do you know if bloodwork alone can tell you if you have liver damage?)  This Dr. has been of no help w/ questions, etc.  So that's what the nurse said when I callked back and when asked if they (GI dr.s....supposedly only ones in my town) ever refuse pts trmt she said "yes".  I'm just so alarmed, so you're saying it has to be really bad and then they'll treat you??  I don't think it's in my head, Bill...I have had this since 2005, have alot of mental confusion especially, fatigue, alot of stomach distress....thought i was finally going to a dr. who was knowledgable and could help me and now i have to wait to see if he'll even treat me.  Don't you think a viral load of 7 million plus is pretty high?  I'm afraid to see what it is now...thanks for your quick answer.  I guess I have to learn patience.  What really scares me is my frend had a friend,younger than me w/hep c.  She went to visit him as he was dying in the hospital.  He was never treated and continued to use drugs.  She said his belly loooked 9 mos pregnant, he was in a coma and  urine was coming out of his pores.  TTYL.  thank you!
Helpful - 0
87972 tn?1322661239
I’m not sure that you’re more likely to catch other forms of viral hepatitis while infected with HCV. However, you do want to avoid behavior that might expose you to those diseases, especially until you’ve been vaccinated and developed immunity to them. Luckily, neither Hep A nor Hep B is endemic to the U.S. If you need to travel to a developing country, you can ask for a prophylaxis immunoglobins to be safe. In the meantime, try to keep on schedule with your vaccines.

Kunkie, unless you have very significant liver damage, there really isn’t any rush to treat you for HCV. The doctors realize this, and it’s common to wait months to begin therapy… it happens to many of us. In fact, some folks are diagnosed and intentionally postpone treatment for years, and even decades with no ill effects. I think your fears are unfounded.

Try to be patient, attend your appointments, and you’ll eventually be rid of HCV; especially if you have genotype 2; that is responsive to current meds 85% of the time.

Sorry to hear you had a flu- they can be miserable.

Good luck—

Bill

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