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Changing Doctors
I only have 4 weeks of Tx left out of 48. I have been extremely disappointed with the mis-management of my case which at times almosted bordered on malpractice IMO.
Here is a brief overview. The first sign of trouble was about 5 weeks into treatment. I was feeling very poorly and spoke to my GI. He ordered a blood test and suggested that if I was feeling that bad that he may discontinue Tx. 3 weeks after the blood test, he called to tell me my WBC war very low and I needed to start on Neupogen immediately. So for 3 weeks he just left me laying on the couch most of the time so sick I couldn't even work before putting me on neupogen I found out later my WBC was at 1.4.
Next, I went to his office at 12 weeks to meet and find out if I was und. As all of you know, this is a big deal for us because it is a major milestone in Tx. My wife and I had been anxiously awaiting this day since the beginning. After being kept waiting for over 45 min. We were called into the Drs. office and it became very evident he had no idea why we were there. When I finally asked what the VL test results were, he admitted he hadn't even gotten the results from the lab. So we waited another 30 mins. for him to get the results. He then realized he hadn't even ordered a VL, apologized and gave me a lab order. We waited to hear from him and after 10 days, called, left a message and heard back a few days later. At this point my wife said "this guy is an ***** and I think you should find another Dr". This was last February.
At this point, I came out from under the delusion that this Dr. and his MA were capable of managing my treatment effectively but, decided that I needed to become more pro-active and start managing my Tx. myself. Against my wife's protests I decided to stay with him. I would call after every blood test and ask for the results etc.
Last March, my RBC got very low and I became incapable of working. After several unreturned phone calls, he called and said to start eating more red meat and start taking around 200 mg. of Iron supplements daily. I asked about starting on Procrit and he said he didn't think it was necessary even though my RBC was at 1.6. After a few weeks, I wasn't improving so and my platelet count was also really low, so he ordered a blood transfusion. That helped quite a bit but only lasted 3 weeks and the fatigue returned. I asked again about Procrit and he responded with another blood transfusion. This time I was only "perked-up" for a week.
After I demanded Procrit, they put in a request to my Ins. Co. but marked and incorrect code so the request was denied. It took another 10 days with my agressive input to finally get it approved. I've been on Procrit for 4 weeks and I'm really feeling better now.
Some here may recall I'm the guy who ended up in the hospital with bronchitis a few weeks ago. After that, the doctor ordered an ANA test. When I called for the results, he said he had made a mistake and meant to order an HCV-RNA test. When I went to the lab, the the technician, who I've gotten to know, noticed the code was for HBV RNA test and called the Drs. office to correct them. This was 2 days ago, when I called today to get the blood test results, and to find out if I needed the Procrit and Neupogen injections this week, I was told by the MA that the Dr. wasn't in and they hadn't gotten the test results back. I should point out that my weekly blood tests are on a standing STAT order and the lab always has the results to the Drs. office within a few hours. Instead of the MA calling the lab, and then the Dr, or having another one of the 12 other GI's in the practice look at it, on her own authority she told me to just continue the Procrit and Neupogen.
I haven't been seen in person by the Dr since the first week in February. I've only spoken to him twice over the phone since then. I've had to deal with 2 different MA's. The latest one has admitted to me she has never managed an HVC case. There have been other "mistakes" too lengthy to go into.
So after 44 wks on treatment, I'm changing Drs.
Listen to the people who love you while on treatment. The fog can really affect your judgement and you won't even realize it, especially if you are an A type personality and usually have good judgement.
Finally, a question. Another GI in the same practice, who treats my wife for non HCV related issues has asked my wife to have me call him, after my wife described some of my issues. He indicated in a professional way that he felt I wasn't getting the same attention he gives his patients and said he would be happy to take over. I feel kind of weird about that for some reason and am trying to decide if I should call him or just try and find another GI at another practice.
Here is a brief overview. The first sign of trouble was about 5 weeks into treatment. I was feeling very poorly and spoke to my GI. He ordered a blood test and suggested that if I was feeling that bad that he may discontinue Tx. 3 weeks after the blood test, he called to tell me my WBC war very low and I needed to start on Neupogen immediately. So for 3 weeks he just left me laying on the couch most of the time so sick I couldn't even work before putting me on neupogen I found out later my WBC was at 1.4.
Next, I went to his office at 12 weeks to meet and find out if I was und. As all of you know, this is a big deal for us because it is a major milestone in Tx. My wife and I had been anxiously awaiting this day since the beginning. After being kept waiting for over 45 min. We were called into the Drs. office and it became very evident he had no idea why we were there. When I finally asked what the VL test results were, he admitted he hadn't even gotten the results from the lab. So we waited another 30 mins. for him to get the results. He then realized he hadn't even ordered a VL, apologized and gave me a lab order. We waited to hear from him and after 10 days, called, left a message and heard back a few days later. At this point my wife said "this guy is an ***** and I think you should find another Dr". This was last February.
At this point, I came out from under the delusion that this Dr. and his MA were capable of managing my treatment effectively but, decided that I needed to become more pro-active and start managing my Tx. myself. Against my wife's protests I decided to stay with him. I would call after every blood test and ask for the results etc.
Last March, my RBC got very low and I became incapable of working. After several unreturned phone calls, he called and said to start eating more red meat and start taking around 200 mg. of Iron supplements daily. I asked about starting on Procrit and he said he didn't think it was necessary even though my RBC was at 1.6. After a few weeks, I wasn't improving so and my platelet count was also really low, so he ordered a blood transfusion. That helped quite a bit but only lasted 3 weeks and the fatigue returned. I asked again about Procrit and he responded with another blood transfusion. This time I was only "perked-up" for a week.
After I demanded Procrit, they put in a request to my Ins. Co. but marked and incorrect code so the request was denied. It took another 10 days with my agressive input to finally get it approved. I've been on Procrit for 4 weeks and I'm really feeling better now.
Some here may recall I'm the guy who ended up in the hospital with bronchitis a few weeks ago. After that, the doctor ordered an ANA test. When I called for the results, he said he had made a mistake and meant to order an HCV-RNA test. When I went to the lab, the the technician, who I've gotten to know, noticed the code was for HBV RNA test and called the Drs. office to correct them. This was 2 days ago, when I called today to get the blood test results, and to find out if I needed the Procrit and Neupogen injections this week, I was told by the MA that the Dr. wasn't in and they hadn't gotten the test results back. I should point out that my weekly blood tests are on a standing STAT order and the lab always has the results to the Drs. office within a few hours. Instead of the MA calling the lab, and then the Dr, or having another one of the 12 other GI's in the practice look at it, on her own authority she told me to just continue the Procrit and Neupogen.
I haven't been seen in person by the Dr since the first week in February. I've only spoken to him twice over the phone since then. I've had to deal with 2 different MA's. The latest one has admitted to me she has never managed an HVC case. There have been other "mistakes" too lengthy to go into.
So after 44 wks on treatment, I'm changing Drs.
Listen to the people who love you while on treatment. The fog can really affect your judgement and you won't even realize it, especially if you are an A type personality and usually have good judgement.
Finally, a question. Another GI in the same practice, who treats my wife for non HCV related issues has asked my wife to have me call him, after my wife described some of my issues. He indicated in a professional way that he felt I wasn't getting the same attention he gives his patients and said he would be happy to take over. I feel kind of weird about that for some reason and am trying to decide if I should call him or just try and find another GI at another practice.
I hear you and I'm having a difficult time bringing myself to this decision. What scares me the most is the incorrect blood tests, the MA making a decision without seeing the blood tests and without consulting with the Dr. and finally the complete laziness of not so much as calling the lab and getting the results. Heck, it was only 2pm. The labs open till 5pm.
OTOH, you are right, it is only 3 more weeks after this weekends round and then the follow ups.
OTOH, you are right, it is only 3 more weeks after this weekends round and then the follow ups.
It's more than three weeks, though, if you don't change doctors. You need to be followed post-treatment as well.
You're so lucky that another doctor has actually extended an invitation to you, unsolicited by you. This could be a seamless transition, even though you're feeling wobbly from treatment. I would at least accept to meet him. One appointment with him might clear up your ambivalence.
And your wife knows him and arranged this, so I think you should at least show her support for the lobbying she did on your behalf. She deserves that recognition from you, even if you decide to stick with the doctor you know.
You're so lucky that another doctor has actually extended an invitation to you, unsolicited by you. This could be a seamless transition, even though you're feeling wobbly from treatment. I would at least accept to meet him. One appointment with him might clear up your ambivalence.
And your wife knows him and arranged this, so I think you should at least show her support for the lobbying she did on your behalf. She deserves that recognition from you, even if you decide to stick with the doctor you know.
I was und at week 12. I asked the Dr. to do another VL at 24 weeks and the response "We don't do a 24 wk VL. If you are und at week 12 we reccomend completing the entire 48 weeks". At this point, he isn't talking about extending Tx. (although it's difficult to get him on the phone, so who really knows for sure) but that could change depending on the RNA test. I'm assuming at this point my last peg shot will be Oct 11th. then another week on Riba and perhaps a few more weeks on Procrit and/or Neupogen.
I really sympathize, it sounds like serious neglect to me. All I know is it happens a lot...the way you get results is to call the advise nurse every day until something is done..these guys see so many people, they forget your case within 3 minutes. My docs recall is close to nil even though I stand out like a sore thumb with my research and weird science in hand on each visit....so imagine how much recall or rumination the unremarkable case gets. Also, I've learned they don't LIKE dealing with insurance on the recue drugs...so one must really get insistant and persistant.
but look,
you have 4 weeks left. All you are going to do at this point is tick off you doc/clinic, and chances are no one will see you for one month tx left. (it takes 2-6 months just to see a new hepatologist here in the NW) and seeing another GI for one month?? How much will that improve things?
I think the better idea might be to start asking around your town who is really good, and try to get an appointment for follow ups and future care, but do it carefully.
It's a sad but true fact that no matter how bad docs screww up, if you tell the next one what the last one did wrong you will be flagged as possibly a problem case, so you need to be careful how you make the switch and how you explain yourself and your treatment thus far is tantamount to what kind of future tx you will receive.
If you were 4 months into tx with a long ways to go, then I'd say switch docs, but so close to the finish it hardly has any payoff, and may burn a bridge you may end up needing to still be in place.
mb
but look,
you have 4 weeks left. All you are going to do at this point is tick off you doc/clinic, and chances are no one will see you for one month tx left. (it takes 2-6 months just to see a new hepatologist here in the NW) and seeing another GI for one month?? How much will that improve things?
I think the better idea might be to start asking around your town who is really good, and try to get an appointment for follow ups and future care, but do it carefully.
It's a sad but true fact that no matter how bad docs screww up, if you tell the next one what the last one did wrong you will be flagged as possibly a problem case, so you need to be careful how you make the switch and how you explain yourself and your treatment thus far is tantamount to what kind of future tx you will receive.
If you were 4 months into tx with a long ways to go, then I'd say switch docs, but so close to the finish it hardly has any payoff, and may burn a bridge you may end up needing to still be in place.
mb
Johnare,
Did you clear the virus by wk 12? That is very important because your chances of SVR are decreased it you did not. Many renowned hepatologists are advising those who do not clear by 12 wks to extend to 72 wks. This may be a consideration for you depending on your circumstances and it doesn't sound like your current dr has a clue about standard treatment never mind newer protocols. Extending treatment shouldn't be based solely on whether you didn't clear at 12 wks, you must factor in how you have previously handled tx and whether YOU think you could tolerate the additional tx time. In my opinion, 3 weeks one way or the other isn't going to make any difference as long as you have the rescue drugs you need to see you through to the end. Ask for a sensitive PCR at EOT. Heptimax is the best. If you feel more comfortable for the next 3 weeks with a new doctor, than just do it. Piece of mind is as important as feeling physically better. The decision is yours, just make sure you have all your bases covered.
Good Luck
Trin
Did you clear the virus by wk 12? That is very important because your chances of SVR are decreased it you did not. Many renowned hepatologists are advising those who do not clear by 12 wks to extend to 72 wks. This may be a consideration for you depending on your circumstances and it doesn't sound like your current dr has a clue about standard treatment never mind newer protocols. Extending treatment shouldn't be based solely on whether you didn't clear at 12 wks, you must factor in how you have previously handled tx and whether YOU think you could tolerate the additional tx time. In my opinion, 3 weeks one way or the other isn't going to make any difference as long as you have the rescue drugs you need to see you through to the end. Ask for a sensitive PCR at EOT. Heptimax is the best. If you feel more comfortable for the next 3 weeks with a new doctor, than just do it. Piece of mind is as important as feeling physically better. The decision is yours, just make sure you have all your bases covered.
Good Luck
Trin
Part of the problem is I've tended to minimize how poorly managed my case was and thought I just needed the Dr. to write the scripts and order the tests and I'd take care of getting to the end of Tx on my own. I also will probably get wobbly by Monday and tell myself "It's just 3 more weeks, why change now"?
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