Hep C Discussion Forum

TazKat · Senior Member

RE: Getting off on the wrong foot...

Isiscat2011 · Guru

Piggles925 wrote:
This is what I was thinking too. I'm trying to figure out how to do this right now. I never talked to him about contacting between appointments. I called his admin today and left a message asking if I can email him (since his email is on his business card.) I'll wait the appropriate amount of time if I don't hear back and email him anyway.
______________________________________________________
Sounds like a good plan. Another thing is that many docs (but not all) are on call for off hours. While you don't want to abuse this access, if you are really concerned, it is okay to call then.
If the doc has a computer he should be able to pull up your records from anywhere. Most medical offices are very busy and we can't assume that the docs always receive or have time to respond in the midst of a busy day.

LadyAlaise · Senior Member

I agree with most of the points made by everybody here;
For myself this is my experience;
I have an NP who mainly handles my care. The office has a 24hr on call nurse in case something should arise overnight or on weekends or should I have a question or concern; I use them frequently.
I have taken a more direct approach to my treatment; I get involved; discuss my lab results and pester them with questions those at the office have actually told me how refreshing it is to see a patient get this involved with their treatment.
I have my NP's email and email her updates usually once a week if I feel the need or with questions or concerns that aren't imediate or emergency related.
When I got severe scaly patches that got worse and spread from my injection sites I emailed my NP and she asked if I could send a pic; I did; she felt the severity warrented seeing a reg doctor; she was concerned it was cellulitis; turned out I am having mild allergic reactions to the interferon which at the time was greatly worsen/amplified by the Incivek I was on; My point is I was able to get the care I needed by making them consistiently aware of my progress. I was later taken off Incivek because the rash it caused in me got very bad. My NP at the time wasn't sure I needed to stop but she called in another Liver Doc (as mine was out of the office that day) and the doc said yes, stop incivek now. I think my NP may actually have a better idea about Rash responses now lol. Again; because I had regularly been in touch in one form or another with my NP and the office I was able to get immediate care and response to my situations.
I also for my own peace of mind have requested on regular basis my copies of my lab results so I can better educate myself.

I find that being my own advocate and very proactive in my own treatment has helped immensely!

Susan · Member

Piggles925 wrote:
Susan wrote:
I agree....meet with your doctor and insist on more proactive care. You are paying for the blood work and if you want it once a week, ou should have it once a week. You are your best advocate. Be strong and insist on what you feel is best for you!
Thank you for this really good advice. I guess I just needed validation from others that I was doing the right thing here re: being proactive. Which is good because I am not very good at being quiet or sucking it up when I feel like my medical needs aren't being met.

You are welcome! You go girl!

Piggles925 · Member

news wrote:
I agree with Kelly. You need to get an audience with the MD, discuss your concerns, and alert him to the somewhat flippant way in which your case is being handled.

Thanks Alan. I started working on that today...

Piggles925 · Member

Susan wrote:
I agree....meet with your doctor and insist on more proactive care. You are paying for the blood work and if you want it once a week, ou should have it once a week. You are your best advocate. Be strong and insist on what you feel is best for you!

Thank you for this really good advice. I guess I just needed validation from others that I was doing the right thing here re: being proactive. Which is good because I am not very good at being quiet or sucking it up when I feel like my medical needs aren't being met.

Piggles925 · Member

Isiscat2011 wrote:
This problem is a tricky one for women especially. We intuit there is a problem but we don't want to be seen as the bitch who can't get along with others. As an advocate yourself you already know you must put that aside and think only of whether your treatment needs can be met under these circumstances.

Wow, you made a lot of good points, this one in particular.

I think I gotta stop worrying about appearing like I am a bitch, and just keep advocating for myself, including having another doctor advocate on my behalf and figuring out how to get into direct contact with my hepatologist.

Because I'll be damned if I am going to let a nurse (no, she is not a NP) get in the way of my successful Hep C treatment.

Piggles925 · Member

Kellyw wrote:
Just like finding a doctor it is important to trust those who you are depending on for health advise. I think it might be a good idea to contact your MD directly and just go over what the nurse said and ask if that is what he wanted?

This is what I was thinking too. I'm trying to figure out how to do this right now. I never talked to him about contacting between appointments. I called his admin today and left a message asking if I can email him (since his email is on his business card.) I'll wait the appropriate amount of time if I don't hear back and email him anyway.

In the meantime, I am sending a follow-up email to the nurse, mostly because I want my concerns documented in writing. Not sure that will get me anywhere, but at least I can forward the email to the MD if I get an inadequate response from her. There is only one nurse...kinda makes me wish I had Kaiser right about now!

-- Edited by Piggles925 on Tuesday 28th of February 2012 08:42:05 AM

Isiscat2011 · Guru

Hi Ms. Piggles: I am sorry you are experiencing these problems. It seems that having nurses (particularly ARNPs) run the day to day operations of administering this tx is becoming the norm. While this may be fine for some, it is probably not acceptable where a patient has pre-existing or chronic conditions such as yourself, or where the side effects are severe. It sounds like you do need close monitoring and not receiving it could be problematic if not catastrophic.

Aside from the fact the nurse you described could be a ditz, if you run into problems down the road, no nurse is qualified to deal with multi-system medical issues of this magnitude, imho. So, it isn't simply a communication/personality problem, or getting off on the wrong foot, it is an issue of receiving the quality of medical care you need.

This problem is a tricky one for women especially. We intuit there is a problem but we don't want to be seen as the bitch who can't get along with others. As an advocate yourself you already know you must put that aside and think only of whether your treatment needs can be met under these circumstances.

Assuming the best case scenario (no significant medical problems throughout your tx) you are probably ok with Nurse Celebrity Watcher. Since you can't realistically assume no significant problems will occur, I would suggest you try to bring the hep doctor on board to monitor the day to days, asap.

A good way to do this, if you cannot do it directly, is through another doctor such as your doctor who stated that you will need close monitoring. Docs listen to each other sometimes better than they listen to their patients. See if that doc will have a chat with your hep doc or perhaps even keep tabs on your progress. This is serious business and your medical team needs to treat is as such. You can make these adjustments to your tx plan tactfully and respectfully, I'm sure, but if your gut tells you this doesn't feel right already then please pay attention. Best wishes to you, Ms. Piggles.

Susan · Member

JoAnneh wrote:
Thank you for all the detaIls!!! I start triPle tx end of March! U gave great ideas as last time on RIBA I couldn't sleep Thanks again, JoAnne

You are welcome. Let me add, too, that I kept insisting on something for sleep from my doctor. The first two weeks my sleep patterns were SO disrupted I wa averaging only about two hours of sleep a day. I knew I could not heal with out sleep and felt like a walking zombie. Finally, he broke down and gave me Restoril. Although it doesn't help a great deal with falling asleep, because I still take an hour or two for that, I believe it is helping me stay asleep a bit longer. Although interrupted by morning meds, I am averaging about six to seven hours a night/day now. And boy what a difference! Cheers.

JoAnneh · Guru

Thank you for all the detaIls!!! I start triPle tx end of March! U gave great ideas as last time on RIBA I couldn't sleep Thanks again, JoAnne

news · Guru

I agree with Kelly. You need to get an audience with the MD, discuss your concerns, and alert him to the somewhat flippant way in which your case is being handled. Demonstrate that you are taking notes by taking them out and referring to them. Make sure to put them away carefully, indicating there will be more. It is possible nothing will change. But it might. I feel so fortunate that I got a good CRNP. She handles everything, and is responsive, attentive and smart.

I think it is pretty much etched in stone that Incivek goes 8 hours apart, at the same time each day. The ribas are a little more forgiving. The Roche/Genentech lady told me I could take them with the first two Incivek doses of the day, and the CRNP later confirmed that. I have had labs every two weeks for 14 weeks (going again on Monday). CBCs one time, CBCs plus liver stuff and VL the next. I am not your doctor, and Isiscat will be quick to point that out, but I think you need to get a little closer to the doctor and verify the things the NP is telling you. I hate it that you are getting this treatment right out of the box.

Alan

andrzej · Veteran Member

I don't like anyone playing God with my health, I would dump her ASAP. My 2 cents.

Kellyw · Senior Member

Just like finding a doctor it is important to trust those who you are depending on for health advise. I have had a weekly CBC since I started with a longer list of labs once a month. My nurse said we would go to every 2 week CBC once I am stable and since I have not been it has been once a week. Can't imagine starting and having no labs for 1 month? 3 wks? My WBC went way down and with in 2-3 weeks I was on a shot to boost them up. not sure I have been tested for dehydration? Not sure what they do to test that. I think it might be a good idea to contact your MD directly and just go over what the nurse said and ask if that is what he wanted? Also my schedule is to see the nurse every month. Not sure I will ever see the GI MD again?

but if I got bad vibes from my nurses I suppose I would contact my GI MD. But then I am Kaiser so I can email him. Also I suppose if you only have one nurse to talk to you will need to feel good about her. I do have three in my Hep C area so if I really had a problem I suppose I could just insist on seeing one I felt good about. Sorry rambling here, just trying to work through your options as I would see them. Take care hope you find some peace with your care

Susan · Member

No, you are not in the wrong here. Your care should be about YOU....not people sitting in the darned Oscars presentation! You are right about the Incivek ....take it as close to eight hours as possible. I take mine at 6,2, and 10. This allows me a 30 minute window if I happen to be a little late. I tried getting up at 5:30 but it just wasn't for me. The extra 30 minutes there makes a world of difference. I take my ribavarin at 6am and at 2pm. I was taking it at 5pm but I had such insomnia problems that once I was well into treatment, I moved it back to 2pm. I waited until I knew the drugs had begun to build up in my body. Initially I took two in the morning and three in the afternoon. Again, because of the insomnia, the doctor had no problem with my switching that around too so I now take three at 6 and two in the afternoon. I have found the easiest thing for me in the morning is to take my dose with a Nutrament drink and a tablespoon of orange flavored olive oil chased with OJ. (24g fat total). I chase all of that with 20 ounces of ice cold water and head back to bed for another three hours of sleep. My mid day dose is usually with a sandwich, chips, and a glass of whole milk. I can then eat a 'regular' albeit small dinner. My last Incivek dose is either with ice cream, a milkshake, peanut butter or pimiento cheese snack with whole milk. Rinse and repeat for the next day ;) I agree....meet with your doctor and insist on more proactive care. You are paying for the blood work and if you want it once a week, ou should have it once a week. I don't always get to see my doctor, but I do get a copy of my labs once a week and keep them in a notebook. I also keep a spreadsheet of my dosage times and the meals I eat. You are your best advocate. Be strong and insist on what you feel is best for you! By the way, I was UND at week four! I am Now beginning week seven of treatment.

-- Edited by Susan on Sunday 26th of February 2012 04:43:43 AM

-- Edited by Susan on Sunday 26th of February 2012 04:44:07 AM

Piggles925 · Member

Hi all,

So I went for my nursing education session yesterday evening and took my first shot of Pegasys at the end.

Seems my hepatology nurse like to do things her way. She canceled an appointment I had with my doctor and rescheduled it without talking to me first. She ignored information from one of my doctors about closely monitoring anemia and dehydration which will make another on of my chronic conditions worse. I was hoping we would do labs 2 weeks in to check for anemia, but she wants my labs draw in 3 weeks. And apparently those labs are my 4 week labs?!?

Plus her education session was interspersed with tales of treating Academy Award winning actors (who were sitting at the Oscars while on treatment) and then all the people on treatment that got admitted to the hospital this week due to side effects. Oh, and how my pharmacy insurance is hard to work with (versus her favorite specialty pharmacy that isn't in-network for me and I think she gets kick backs from.) Plus she keeps bringing up how I am trained as a social worker--I think because I advocate for myself and she doesn't like that.

The kicker was her suggestion for taking my Incivek and ribavirin.

Here are her suggested schedules for Incivek, which she says she gave as input to Vertex when the drug was in clinical trials:

6am 1PM 8PM

7am 2PM 9PM

8am 3PM 10PM

I don't feel comfortable going 10 hours between the evening and morning dose. I am going to take it every 8 hours instead: 7am 3PM 11PM. After all, Vertex says to take it every 7 to 9 hours...

Then she said I should take my ribavirin 1 hour after the morning Incivek with breakfast. I don't know about you guys, but if I eat a meal with 20g of fat, I am in no way hungry an hour later. So I am taking the ribavirin with the morning Incivek. She also wasn't very clear about when to take the second dose, even after I asked her several time. So I did some research and I've decided to take it 10 hours after the first dose with a snack.

So what do you guys think? Do I have a problem here? Any ideas how I can turn this situation around? I don't have a way to contact my doctor outside of appointments YET, so in the meantime I have asked another doctor to contact him and discuss monitoring me more closely for side effects and lab work.

-- Edited by Piggles925 on Saturday 25th of February 2012 02:07:56 AM

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