Feedback on designing a support system for people with HCV

[Trish77]

I've been invited to participate in forum on designing a support system for people with HCV.  The psychiatrist on my treatment team is spearheading this along with another doc who is focusing on people on dialysis.  Their focus is on the mental health of people dealing with illness.  This whole treatment team is taking the approach that it's also the mental health of someone on treatment that needs to be taken care of and I strongly agree.

It's a unique opportunity for me to put a hepper's voice into the mix and I'd like to be able to make the most of it and represent many voices.  I would really appreciate your feedback on what supports have helped you or would have helped you AND your family while you go through treatment.  It was mentioned to me that this could include online resources, support groups, medical supports of various kinds .. anything inside and outside of the box.  

It's a good opportunity for voices of people with HCV to be heard and for it to improve treatment processes and outcomes. I guess I'm kinda thinking big picture .. if there are good things implemented as a result and they are successful, it positively influences others to perhaps implement these things as well.  

If you think it would have worked for YOU... I would appreciate hearing about it or if you know of systems that are in place and are working well....or things that are NOT working well for that matter ...  I'd appreciate the information on that as well.  

Thanks.

Trish

[geterdone]

Well Trish, what would be the Stages and how many levels of each Phase of the stages being experienced in a general consensus. In the pamphlets sent with the meds it list all that may effect a person but what are the main ones and in what general order. Not all people experience the same side effects, so what would be the most prevalent in a descending order from stage one to post?

The Ten Stages of Hepatitis C

The Illness and its Symptoms
The Doctors visit, History – what are the markers?
The Conformation, Blood Test
The Biopsy, Viral Load
The Treatment plan, the doctor explaining what may occur during each stage.
The First Stage, weeks 1 through 12
The Second Stage, weeks 12 through 24
The Third Stage, weeks 24 through 36
The Forth Stage, weeks 36 through 48
Post Treatment

[Trish77]

Oh, it makes sense.  As do all the other posts above yours.  It helps that I've been there and I understand.  It's one thing to treat it .. it's another thing to go through it.  However, my perspective is still limited to my own observations and experiences therefore very much appreciating the input from everyone ongoing.

[Trinity4]

Yes Trish, that and the physical aspect as well.  A good support system is really important and that can start with education and preparedness in advance for potential psychological and physical effects of tx.  It's not just about how we are effected psycholocally, but what happens when we experience physical problems and what options are available.  My doctor never discussed that so as physical problems arose early in tx, I thought it was the end of the world. I had nothing to gauge the severity on other than the input from this forum. It consumed me for a while, until I just said enough and let it go.  This forum was my only source of information with a hands on type approach. Thankful for that. If it had been explained to me prior to treating, I would have been in better position to cope with the emotions caused by physical problems. I could have sought out a support group in my community but my doctor never provided a list of those either. Doctors should try to educate their patients on all the "what if" scenarios, both physcial and emotional.  I hoping that makes some sense because I just read it over and raising my eyebrows.  Not a good day for detal.
Trin

[desrt]

In line with Trinity's comments, I'd like to add that prayer and 12 step meetings also helped me, but that's a way personal issue. People should be aware, though, of the value of having good spiritual, moral, and emotional support systems in place / available.

[meNtoby]

PUBLICITY. PUBLICITY.  PUBLICITY. More public awareness that it's out there, that lot's of us have it.  That we're not dangerous to be around.  At buffets, or dinners,  or ANYWHERE.  Just more worldwide awareness would help.

[SeiserL]

Information and conversation.
Right perception and understanding.

Suffering comes from ignorance and not accpeting what is.
Fear/anxiety comes from negative fantasy about the future.
Depression comes form negative fantasy about the past.

Exercise and meditation.

All the above applies to the support system that supports me through HCV and Tx.

Until again,
Lynn

[Trish77]

"I got a very good "pre-education" on the effects of tx drugs.  I did alot of research on my own as well.  What I wasn't prepared for was how the treatment can become self-absorbing.  I know when this is happening,  I can't switch channels in my mind.  I become fixated on my treatment and what it's doing to me rather than finding ways to channel these emotions.  A bit of bad news like my whites are low (might have to dose reduce or start neup -  just got that news yesterday)  will send me into a tailspin and I have to constantly check myself or I start obsessing about something I have no control over.  I've read the standard advice to get yourself back on track, but I like what desrt said about exercise and I also think a more intensive approach to channeling our emotions would be helpful."

A more intensive approach to channeling our emotions .. I want to make sure I understand you correctly .. I take that to mean that more information also on what sort of impacts treatment can have in non-physical ways, such as psychologically or emotionally and strategies to deal with the impact of these things.  Am I understanding you well enough?

[Trish77]

desrt:  "I would like to see patients given balanced and honest information on serotonin imbalance and depression prior to tx. Patients need to hear this presented in an understandable, non-scary way from someone knowledgeable on the issue - not necessarily the Rxing physician since a lot of gastro docs may not have the time or inclination to deal with this aspect of tx
Also would like to see patients presented with non-SSRI options for dealing with depression, such as the specific amounts and types of exercise needed to help boost serotonin levels naturally.
Exercise at specific levels for set amounts of time helped me, but might have helped more if I known about this prior to tx. "

Copied your whole post actually, couldn't find anywhere I'd thought I could leave out.

And now Jim:  "There are many ways to approach this but high on my list would be more education on the treating physician level. If the treatment doctor doesn't understand (and they often don't) the dynamics of these very strong pychotrobic drugs then all but the more proactive patients are put at real disadvantage. So, I'd opt for better training/courses/awareness on the treating physician and NP level. Problem is that many doctors don't like to be told they don't know their stuff which many unfortunately do not. "

desrt, you've mentioned better education for the patient by someone knowledgable of the issues and Jim, you've mentioned better education for the treating physician and NP's.  I think both are important and excellent points.  If the treating physician and NP are the ones giving the information, then we want them to have the RIGHT information .. if they don't have it, then have it come from someone who knows what they're talking about and can educate properly.

Include education on broader coping strategies, not just SSRI options.  Educate more on this.  Have I summed up well enough?  Please revise or add if I've not quite caught it well enough.

[Trish77]

Gee..wonder how that would go over to bring forth a recommendation of access to medicinal pot. :)  In all seriousness though ... you're not the first person who has mentioned that this has helped.  It's not as controversial as the alcohol debates but does have it's moments.  I'm going to mention it because, again, you are not the first person to mention this and I want it all on the table for consideration particularly as one thought may lead to other thoughts and surprising things can happen.

[pjhep80]

i smoked alot of pot

LOL

ok no not alot, i was careful not to smoke all the time, too much of anything is no good for you at least i have learned that over the years ....it helped me out on shot night immensely and i did not need any anti-d's or anything thru the entire 6 months tx, just some tylenol once in a while for aches & pains

[Trish77]

I should have said focus group, not forum .. two different things.  

My role is as a person with Hep C who wants to see things improved and as a volunteer, no money into my pocket.(?) I mentioned to my doctor at my last visit that I thought that sometimes the care people received while in treatment for Hep C bordered on criminal and he said next visit we would talk about that more as they were working on some things and this is what he put out to me at this visit.  They are trying to deliver better services and come up with a model that works.  

I am gratified they are asking people with Hep C what works.  I went to a workshop just before I started treatment and it was all service providers and only two of us there with Hep C.  Now how are they going to deliver effective services if they only talk amongst themselves?  I see alot of that in the healthcare profession .. they decide what works best for the people they serve but they don't ask the questions.  So I'm pleased to be being asked at least and I know it will take a long time for change to happen but it has to start somewhere.  So I simply want to make the most of this opportunity, it doesn't come along that often.

Not sure I understand the reason for your question or the point you're making with the subsequent comment about the doctor shortage here in Canada.

[Trinity4]

I got a very good "pre-education" on the effects of tx drugs.  I did alot of research on my own as well.  What I wasn't prepared for was how the treatment can become self-absorbing.  I know when this is happening,  I can't switch channels in my mind.  I become fixated on my treatment and what it's doing to me rather than finding ways to channel these emotions.  A bit of bad news like my whites are low (might have to dose reduce or start neup -  just got that news yesterday)  will send me into a tailspin and I have to constantly check myself or I start obsessing about something I have no control over.  I've read the standard advice to get yourself back on track, but I like what desrt said about exercise and I also think a more intensive approach to channeling our emotions would be helpful.  
Trin  

[portann]

Hi Trish,

I`d like to know if your role in this study is on a volunteer basis or as part of a government grant or in an otherwise paid capacity.

Many people in Canada are unable to even find a family doctor, and it takes others months to get in to see specialists even for life and death interventions.

Good luck.

[Isobella]

It doesn't surprise me that they have asked for your input.  You have presented yourself-throughout your tx-as an educated and informed patient.  And have been right on target with your advocacy because of the research you have done.

I think you are gonna be a great voice for us =)

Good for you Trish!!!

Isobella

[jmjm530]

There are many ways to approach this but high on my list would be more education on the treating physician level. If the treatment doctor doesn't understand (and they often don't) the dynamics of these very strong pychotrobic drugs then all but the more proactive patients are put at real disadvantage. So, I'd opt for better training/courses/awareness on the treating physician and NP level. Problem is that many doctors don't like to be told they don't know their stuff which many unfortunately do not.

-- Jim

[desrt]

I would like to see patients given balanced and honest information on serotonin imbalance and depression prior to tx. Patients need to hear this presented in an understandable, non-scary way from someone knowledgeable on the issue - not necessarily the Rxing physician since a lot of gastro docs may not have the time or inclination to deal with this aspect of tx
Also would like to see patients presented with non-SSRI options for dealing with depression, such as the specific amounts and types of exercise needed to help boost serotonin levels naturally.
Exercise at specific levels for set amounts of time helped me, but might have helped more if I known about this prior to tx.

[Trish77]

I say through treatment... and I don't mean only interferon and ribavirin ... I mean for those who are dealing with HCV in general who are not able to go through treatment, have gone through treatment and haven't responded, etc.... just anyone dealing with HCV in general.

Thanks.