Hi Matt Chris,

Thanks for chiming in on this thread! Sometimes I think, only people who have lived with the hepatitis C virus can understand what we are going through. So I really appreciate you having read and commented on my long post.

I'm wishing you the best when the new treatments become available. I'm hoping we're all cured soon!

Cheers!

Peter

Hi Isicat2011,

Thanks for replying to my long long post. I appreciate your thoughtful answer and am trying to take bigger picture into consideration when I deal with the treatment staff at OHSU.

The good news is, so far it looks like our family trip to Portugal is on.

Once again, I appreciated your reply, And also the fact that you you can read my long post in the first place!

Best regards,

Peter

Hi SuziQ,

I always appreciate your comments, so thanks for the supportive reply.

I've been so sorry to hear of your stressful living situation. I hope some of the things get resolved sooner rather than later. And abdominal pain sounds horrible. On the other hand, I am so happy that you continue to remain undetected. At least that's a BIG relief!

Best regards, 

Peter

Hey Peter

Congrats on finishing your 12 weeks of treatment and being UND its a big accomplishment.

Sorry about having a rough time with the medical system in your town, it's not uncommon. I think that Isiscat makes a valid point about doctors and their staff in a lot of cases they are under very stressful circumstances, its happens to a over scheduled over burdened health system. Sometimes it effects even good doctors more than it should and makes average ones  deplorable. It should however not effect your end result of treatment and that is good news.

matt

Hi Peter:  Your primary care doc can order a viral load check so that should solve that problem.   Your tx is over now but because you have cirrhosis you will need to continue monitoring your liver.  It would be best to have a hepatologist do the monitoring but it sounds like there is a shortage of hepatologists in your area.  Your PCP can order the routine tests--ultrasound/CT/bloodwork/endoscopy--to monitor you.  Another option is to get a referral to a gastroenterologist for purposes of monitoring. 

Having said that, I would hold off on making any future plans until you find out whether you are SVR.  That unknown fact will make a difference in how you may wish to proceed. 

No, you are not being unreasonable.   You deserve to be treated respectfully and given high quality medical care.  

If you are feeling particularly generous in spirit, however, consider that this is a stressful time for docs who treat hepc too.  Things hepc are presently in a state of transition which always creates chaos.  Docs are being called upon to fight with insurance companies just to get their patients treated. Moreover, they must prescribe off-label to get their patients all orals and that raises a whole other bunch of concerns.  None of this justifies sub-par treatment but it may give you a different perspective in dealing with them and with the problems.

Hang in there!  The health care system can be a bear to navigate.  Personally, I think it is a big ole mess for most patients who require significant medical care. 

P.S.  I'm truly sorry to hear about your Mom.  I hope you will be able to join the cruise and that it will bring you beautiful memories to hold in your heart. 

Hi Peter,

Just get your primary care doctor to order a viral load test for you.  I am not crazy about the way Debbie is treated at OSHU. She waits a long time there and says the doctor spends almost no time with her--and she is on the transplant list. She gets a lot of her work done with her primary doctor there in Portland. 

I just think some doctors don't really see their patients as human beings.  I stopped seeing the gastro here as  he was VERY arrogant.  Said if I wouldn't take interferon then there was nothing he could do--several years ago.  Of course he was right at the time but he didn't even suggest return visit.  I found my clinical trial on my own and the staff there was WONDERFUL. 

So, go to your primary, get your viral load there and go on with your plans.  Are you planning to go on the cruise ?   Your treatment is OVER.  I am sure your primary will accommodate you with getting on back to life.  Get this VL test out of the way so you can relax about it.  It is NOT you --it is the staff at OSHU.  Good luck !!!  I'm on your side.

SuziQ   

Wow, I don't know what to say to that!!!!!

Hi all,

I've just finished up with a 12 week course of Sovaldi and Olysio. I have had cirrhosis for about eight years and the HCV for about 45 years. My viral load was below 45 at 4 weeks and UND at 8 weeks and is now UND at 12 weeks. So on that front all is good!

The problem I am having is with the actual hospital where I am getting my treatment. It has been very stressful dealing with them and I wonder if my expectations are too high.

Here's the story.

My doctor at OSHU (Oregon Health and Science University) is Atif Zaman MD. He is the chief hepatologist at the hospital and has always seemed competent and thorough. I have been seeing him every six months for about eight or nine years. He has been competent, is very bright, and as always made sure all my questions get answered. 

Every time I have seen him, of course, I asked him about treatment. We both decided that interferon based treatments would not be good for me. There is a history of severe depression in both sides of my family with suicides and I also have had a history of depression.

As the new treatments got closer about a year or two ago, I started to ask about clinical trials. I was very eager to clear the virus as my HCV has been progressive and I wanted to stop the progression from compensated to decompensated and to decrease the risk of HCC.

No clinical trials ever materialized from him and when the FDA approved Sovaldi and Olysio this past year I expected he would be eager to start me on the treatment. No go. He wanted me to wait for the treatments next year. When the AALD recommended Sovaldi and Olysio for interferon intolerant treatments, I again expected him to jump on the bandwagon and prescribe the treatment for me. No go.

Finally, out of frustration, I talked with my primary care physician and he agreed that he would try and prescribe this treatment. We started the process, but ran into problems with approval from United Health Care.

I called Atif Zaman and asked him again if he would prescribe the treatment. He reluctantly did so under the condition that if the drugs were approved but then were disapproved at any time into treatment I would pay out of pocket for the drugs to be continued as he didn't want to stop the treatment in the middle. Only after I promised him that did he start the process. As part of the process he turned me over to the OSHU 'treatment team'.

There were again a bunch of problems with United Health Care and it was thanks to the hard work and perseverance of my treatment nurse, Karista Peabody along with Shelly at Central Drugs that everything got arranged. I ended up with no copay and the drugs, after the initial pickup, were hand delivered to my house by courier for the rest of the treatment. I highly recommend Central Drugs to anyone in the Portland area doing treatment. It was Shelly who arranged for the PAN foundation to pick up the copay to the extent I didn't even have lift a finger.

The problems with OHSU started at my 'education' appointment. I was scheduled to meet for 40 munites Karista who would instruct me how to take the pills and twenty minutes with my new 'treatment doctor' for further elucidation. The meeting with Karista went fine (as she is an angel) and then I waited for an hour and ten minutes in the little treatment room for Ken Ingram the PA. BY the time he showed up, I was late for a tax appointment with my HR block tax person. All I wanted to do at that point was get a few of my questions answered, get my meeting over with and get out of there. 

But nooooo! Ken wanted to go over the consent form. I never ordinarily sign a consent form without reading it, but apparently Ken wanted to make up is lateness with me and pressured me to sign the agreement and 'read it later'. The agreement was for people taking inteferon and ribavarin and sovaldi which I wasn't even taking. The other drugs had been penned out. Included in the agreement was a provision that I consented to alcohol testing (I haven't had a drink since 1990) and also mentioned that the treatment might kill me! Ken also mentioned that they had had a person on Sovaldi and Olysio decompensate. Now I had a lot of questions but Ken was in a hurry and so was I so I put my questions off.

Mu second appointment went a little better but I got the impression that they didn't really know what they were doing with this new treatment. They only had a few people on it and seemed at a loss as to how to handle it. They had been dealing for so long with IFN and RBV and were, I felt, somewhat stuck in that mind set.

The third appointment was also a problem. Once again I was kept waiting a long time past the appointment time. When I finally got into the room a nurse was with me going over my medications. I had a lot of questions to ask but when Ken Ingram finally came in he was so rushed he didn't even wait for the nurse to finish with me. He actually knelt on the floor next to me and started asking me questions. While I was answering the first question, he indicated me over to the table and started to examine my liver. When he was done with that, before I got to even ask any questions he was gone! What a waste of my time.

That was the same day I had my 4 week viral load . They had promised to let me know as soon as they got the results back but by Friday of the next week I hadn't heard back so I called. The person I spoke with said that the results were in my chart but she wasn't authorized to release them. Somehow they had forgot to let me know they were in. So I asked to be connected to someone who could. She said that there was no one available. This all happened close to closing time and I was afraid I would have to wait all weekend for the results. So I asked to speak to her manager. She said her manager was gone. So I asked to be connected to the hospital management office. And she hung up on me!

When I called back I  got someone else who put me on hold and then connected me with Karista who gave me my results. When I asked her why the other receptionist had hung up on me she talked to the other receptionist. She came back and told me that the receptionist said that I had called her a bitch (I hadn't and never have called anyone on the phone such a name).

I was really fed up with the hospital at this point. I didn't want to waste any more time with the clueless and always rushed PA, Ken Ingram. I spoke to Karista and she arranged that I could have Atif Zaman back. Unfortunately, he didn't have an appointment available until July 11. 

I did finally talk with Atif about three weeks before my treatment ended.  I called to ask him to extend my treatment for four more weeks.

Because I have cirrhosis, because I wasn't UND at four weeks, and because my AST and ALT, while in the normal range, were higher than everyone elses' who was on Sovaldi and Olysio, and because 100% of all the COSMOS folks with cirrhosis reached 12 week SVR after 24 weeks of Sovaldi and Olysio and only 86% or less did so at 12 weeks, I felt that it would be prudent to run an extra 4 weeks as insurance. 

But Atif Zaman wasn't interested. He expressed concerns about the time he and his staff would have to devote to the approval process, and he also expressed concerns that the extra cost of the drug for me would result in someone else who needed it wouldn't be able to get it. Finally he said he wasn't willing to 'experiment' by extending the treatment and that I would have to point him to 'proof' that the extra four weeks would make a difference. Basically he said no.

Finally, today Karista informed me that the next test would be at 12 weeks EOT instead of the 4 weeks EOT they had originally scheduled because "that's the way they are doing it". When I requested they do it at four weeks because that is a key indicator of treatment success and would go a long way to reassure me she said that they had already done more for me than they had done for anyone else but that since I had an appointment with Atif Zaman this Friday I could probably talk him into it.

I am so tired of arguing and fighting for everything with this hospital. 

So...what do you think? Is all this business as usual? Should I just put up with my own fear of the unknown and ignore their conservatism and bureaucratic self interests...or should I continue to fight to get the care I want? Would you handle all this differently? Am I being too high maintenance? I would see other liver doctors in Portland but I understand that Atif is the best. My own experience with one other (Ken Flora MD) was even more miserable. Should I push for the four week EOT VL? Or should I just get over myself and buck up and wait the twelve weeks? I'm under a bit of stress at the time because my mom's brain cancer has come back (the doctor gives her months to a year) and the whole family is leaving in three weeks for a river cruise with her in Europe.

BTW OHSU is ranked the lowest in the Portland area hospital for infection rates. I have also seen hepatologists in NEW York (Ira Jacobsen, who ran the COSMOS study, and Doug Dietrich one of New York's top hep docs) and my experience with them was that they were surprised at how conservative OHSU was with my treatments. They were all worried about my cirrhosis and my chances for getting HCC and wanted to get me treated as soon as possible. Atif Zaman, as I have mentioned, had to be argued into getting the ball rolling for the Sovaldi and Olysio.

I also get along great with my primary care doc who I think is the best doctor I have ever had. I've never had a lick of trouble with him and I see him every three months. He obviously cares about his patients and it shows.

Thanks for reading all this!

Cheers!

Peter