Starting Friday

[Luna7]

I finally get to post in the 'on treatment' section
Will start Sovaldi & Daklinza on Friday.
It really didn't take long to get approved, though I did contact the Dr's office, the specialty pharmacy, and my insurance to try and move things along faster -- each place often said they were waiting on something from the other, yet what they needed was already completed but but not communicated back yet.

I think the Dr's nurse is a bit peeved at me taking so much control, but you can get away with a lot with high ammonia levels

[Baxter]

I think the Dr's nurse is a bit peeved at me taking so much control, but you can get away with a lot with high ammonia levels

Screw her. They work for you, and sometimes you just have to remind them of that. I have similar problems with my doctor's office - they're basically just an HCV pill mill, and are extremely unprofessional and disorganized. For example, every single appointment I've ever had with them, they had it written down for the wrong time. I show up at 11 AM, and they say, "Oh, you weren't scheduled until 1:30!" I just whip out the appointment card they gave me at the previous visit, show them where it says "11", and grab a magazine.

Most of the crap they do doesn't bother me much because it doesn't affect me. All I need from them is a bottle of Harvoni every 4 weeks, and some blood tests every now and then. As long as I get my pills and my tests, they can go on being as much of a clown show as they want, and it's not my concern.

However - they have an extremely annoying habit of not giving me complete or detailed answers to my questions. I live in a part of the country where most people are pretty poorly educated and, frankly, not very bright, and I think that's who they're used to dealing with. I don't put up with that crap. For example, today I called about my latest labs, and the woman said, "your liver enzymes are normal." I said, "Great. What are the numbers?" She said, "they're all fine." I said, "I understand that, but I want to know the numbers." She got huffy, but she knows by now that I wasn't getting off the phone until I had my answer.

I had to get very blunt with them a few weeks ago, but since I did that I think they accept that I'm just going to be a pain in the ass for the next few months. I was pressing the PA for exact numbers on my 2-week labs, and she was trying to avoid giving them to me. Finally she said, in a patronizing tone of voice, "Your labs are fine. I really wouldn't stress about it." I replied, "Oh, that's wonderful, because neither would I! But I still want complete and accurate answers to every question I ask. That's not going to be a problem, is it?" I think we've gotten along much better ever since.

Don't ever be shy about taking control of your care. If you have a doctor that doesn't like that approach, that's his problem. I just make it clear to mine that as annoying as I may be to them, the sooner they just answer the questions the sooner they can get me out of the office and move on to someone else.

[Luna7]

Sounds like your clinic is a bit of a zoo

Thanks...yeah I could probably do well to incorporate a bit more of your attitude in my dealings with this nurse, Baxter. I'm not one who likes to get into power struggles with people, and that coupled with the fact that they have my life in their hands doesn't encourage assertiveness for me. I've actually encountered people in positions of power who used their power against me. I took it to court, but the whole procedure wore me down. There are some people in the medical profession that would place their need of power and control over my welfare, and this could slow down when I get the medication or not work in my best interest. I do need to keep in mind however that most are not like that.

I actually like the doctor at this clinic but her nurse is, frankly, a bit of a bitch who doesn't seem to think I should challenge her, and it's the nurse I'm having to deal with through this process for the most part. The doctor just gives me her opinion on things and makes it clear it's just her opinion, whereas the nurse acts like I'm supposed to follow her orders without question.

The thing is, the nurse was right about our last confrontation. She kept insisting I not take the medication that's supposed to arrive Friday until I've called them. I kept insisting that, because it might arrive after business hours on Friday and their office would be closed, I would take it Friday and not wait until their office opened Monday. This all went on via emails, and finally she called saying "you must call us before taking this medication". Finally I asked 'why' and it was a valid reason -- they need to make sure the prescription is the right one and that the instructions are correct. It did not occur to me that this specialty pharmacy could send out the wrong medication.
However, if she simply had told me the reason to begin with this little power struggle would never have occurred!

I do wonder if the slowness with which she got the ball rolling with the insurance company & specialty pharmacy was because she was pissed regarding our confrontation about lactulose awhile back. She insisted that my brain fog was due to ammonia & that i needed lactulose, but I tried to explain that my current brain fog, for the most part, was due to inflammation, like having the flu or a cold (I can tell the difference between types of brain fog).

Strangely, I actually empathize with this nurse, as I have to deal with the public, and the public can be nasty. One guy I sold something to actually cussed me out royal in an email when he couldn't figure out some things about the purchase -- I had to actually look up some words he used to understand him..lol. Turns out he was drunk though, and apologized profusely the next day.
The difference between me and this nurse though, is that I realize I'm in a position of power when someone uses my services, and so I will take a bit of flack in any disagreement until we sort stuff out. I'm not sure this nurse even realizes she's in a position of power.

[FutureThinker]

Luna7, I'm really happy to hear your journey is going to start soon, that is what's important!! I've had runarounds with my doctor's office too, and I won't apologize for asking questions, as that is what they are supposed to be there for -- to help us, not aggravate/irritate/stress us. And Baxter, the fact is we live in a day and age that patients must be proactive in their care -- period. So more power to both of you for sticking up for your health! It's our life, not theirs. Onward and upward, FT

[Luna7]

Thanks FutureThinker. I am so ecstatic and relieved that this process can finally begin -- surprised I slept at all last night.  I've been feeling ill for years and waiting until the right drugs came along for GT3. I'm actually feeling in a bit of shock -- it doesn't seem quite real that the medication is being delivered some time today.
My front door is open and sound off on my PC so I'm sure to hear FedEx knocking.

[FutureThinker]

Yes, I remember all too well how also felt shocked when that first bottle was delivered, after fighting for nearly a year for it! I even took a picture of it.  So you are on your way! Keep us posted and all wishes for an uneventful treatment course, FT

[Luna7]

Thanks, and I will.
Yes that's an idea, take a pic of it with my new tablet.
As controlling as my clinic seems to be about this medication I may need to do that anyway

[Luna7]

One week down and 11 more to go!
I became a grandmother this week   And now I can visit the baby without feeling I'm some kind of toxic waste site, though i know the baby can't catch it I still feel better with a lower viral load.