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Lack of Medical Follow Up - What to do?
by Andromedae, Jul 02, 2008 12:41PM
The only insurance that I have that pays for my treatment is through the VA. The VA Hep department sometimes seems to be more concerned with cost cutting than patient treatment. My second week of treatment and I've been having weakness enough to take off work for 2 days. I'm getting paler (especially my legs) and I have a nasty looking rash all over my buttocks (like 70% of it) and under my arms.
I called the treating doctor there and told him what was going on and if I should come in and get my blood levels checked. He tells me "no, this happens all the time and it is why we are careful about screening our patients very carefully and usually only treat those with on-going liver disease because of the side effects. Some people can afford the symptoms and others can not.. " . I kind of took the way he was saying things to be an implied threat that if I complained too much they would just take me off treatment. I pushed them to treat me even though I do not show signs of cirrhosis (but DO have fatty liver) . He wants me to wait until next week (my 3r1/2 week on treatment ) to do the first blood workup.
So how screwed am I here?
(Scared about what's going on)
I called the treating doctor there and told him what was going on and if I should come in and get my blood levels checked. He tells me "no, this happens all the time and it is why we are careful about screening our patients very carefully and usually only treat those with on-going liver disease because of the side effects. Some people can afford the symptoms and others can not.. " . I kind of took the way he was saying things to be an implied threat that if I complained too much they would just take me off treatment. I pushed them to treat me even though I do not show signs of cirrhosis (but DO have fatty liver) . He wants me to wait until next week (my 3r1/2 week on treatment ) to do the first blood workup.
So how screwed am I here?
(Scared about what's going on)
This happens all the time to people on treatment and that is why they should be monitoring your blood levels ongoing PARTICULARLY in the first part of treatment when the ribavirin and interferon kick in.
How often will they be testing you for viral load? Have they told you already? And how often will they be monitoring your bloodwork ?
As for your blood tests, if you have a good relationship with your family doctor, you can get him/her to perhaps give you a standing order for blood tests done at regular intervals. Then you can monitor your levels on your own.
As for your current situation ... if you are concerned, a thought...go to your family doc or go to emerg and get them to check your blood levels.
My two pennies worth. (Canadian pennies :)
Good luck.
Trish
It does sound like the doc was rubbing your nose a little, since you pushed for TX. He is definitely full of "recycled oats" if he is implying that you should not treat until you reach cirrhosis.
Do not let anyone tell you that. Many hepatologists will not do viral treatment for patients once they reach that advanced stage because of health risks associated and poor outcomes that do not justify the risks. Treating cirrhotic patients is very tricky and is often done from a hospital bed.
Once you reach ESLD, the only option then is transplant. If the VA is so concerned about cutting costs, they should keep that in mind the cost of a transplant, not to mention the chances of patient survival at that point!
That's my two cents worth (U.S., so it's probably only about 93% of Trish's)
Brent
P.S. Having read some of the studies by the Military about hep c, I am convinced that their #1 concern, especially relating to veterans, is cost.
Maybe if you continue to complain about the problems while insisting that you wish to continue treatment would be appropriate. I don't know if there is much they can do about the rash, but if your RBC is going down there are drugs that can help that.
Hang in there, sometimes the side effects wax and wane. Perhaps they will get better as your body adjusts to the drugs. I hope so.
Best luck,
Brent
Right now I am feeling very tired and a bit bummed. I'm tired and sweating all the time. When you enlist you are supposed to get free health care out of the deal - the reality is not quite that good. You get some health coverage - but not a lot of care out there. :(
I'm tired and trying to just rest and get my head together - tomorrow I will go back to work (took 3 days off) and then make a better plan. Probably if I complain loudly enough to the right people I'll get something happenning - hard to be feisty though because I'm kind of tired.
I just went to walgrens and bought some cortisone cream for or the rash - benedryl was making me too groggy and dried out.
Andromeda
Canada isn't exactly a bed of roses. It is, however, a godsend to not have to worry about the cost of your biopsy and your doctor visit when you see the specialist. The limitations are more in government regulated care for the masses - a one size fits all approach - which, of course, does not fit all and, because it's government regulated, takes awhile to catch up with current medical approaches, certainly in treating Hep C, which has been quite a frustration for me.
It took me ten months after being diagnosed with Hep C to see the specialist and a full year before I knew my genotype, viral load and got my biopsy. It would have taken me six months to get in for a second opinion and I lucked out and somehow got the appointment only one month later. Then it took me two months to get the next appointment. The drugs aren't free and the government often turns down subsidy applications for less than Stage 2 for persons with Hep C here.
However. If I need to go to emerg, I go. And no worries. So I'll take it.
As for you. I'm sorry about your situation. It's hard enough going through treatment without having to feel as if your care is not being handled in your best interests. I hope you find a solution to your situation that meets your needs. Hopefully others wending their way through similar in the American system will chime in. And I'll keep my ignorance of your system to myself. :)
Take care.
Trish
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Just FYI: That is true, but the ER doesn't cover ongoing treatment programs, as far as I know. The ER will stabilize you and then decide what to do. If you are truly indigent, then I think things are covered better by the hospital, but I am not sure how well or how far this would go. But if you have insurance, the provider will want to be paid (as much as possible!).
The real downside of this approach is that many people do not get the care they need until they are admitted from the ER. This means they are in really bad shape and often too late to really save. It does not work so well as far as preventative care is measured.
I am not impressed with the VA medical care much, though I do not have any first hand experience even though I am a vet. I needed a hand surgery many years ago that stemmed directly to an injury sustained in the Army. I opted to just take care of it using my insurance rather than try to wrangle with the VA over it. I chose this partly so I could choose the surgeon. I didn't want any old "sawbones" going after my hand!
Brent
Anyway, I get a little carried away with feelings and don't mean to offend anyone, especially a good doc. My sincere apologies to anyone fitting that description that is offended.
It's both really. There are many fine people who work in that system. But the system does tend to attract people who may have no other options than to enter into an overwork-very underpaid situation . And there are SO MANY people to treat and so few people to treat them that I think many good health care people just "give up" after a while.
To TRISH: No offense taken in any way - sorry if i sounded like that. I'm just tired. I know I should be in bed now but I cant sleep tonight - tired and can't sleep . super.
Trish