No One Believes Ya

Anyone else going through this?  Nurse says these forums are **** because only a VERY SMALL percentage of people treating are on these and of course they have bad sides.  Nurse, family...everyone seems to think I am over exaggerating symptoms and there is no support....hubby works out of town and the rest does not think anything is serious enough to even help or check up on me....ohh well onwards and upwards!!!!!!

[FlGuy]

When you think about it for a minute, you'll realize that the nurse, family and everyone you mentioned have never expereinced treatment for themselves.  On the other hand, most people that make comments here have had the pleasure of treatment.  Some more than once and with varying degrees of effects.  Although it may be true that the more vociferous are those that participate here I don't believe that it's outrageously skewed.

[Kathy73]

I'm sorry to hear that you are not getting the support you need and deserve. I think its time to get a nurse that is a little more empathetic! I myself didn't tell my family and very few friends. I only told my husband, who has been a great support and a few friends. Its difficult enough to go through whatever sides you are having without people who are supposed to be supportive making you out to be a whiner! If I were you I would get a new nurse (after giving her a what for)! I consider myself lucky not to have horrible sides, just headache, dry skin, hair falling out, etc. And I consider myself lucky!

[lsaldy]

Just to clarify...not trying to trash this forum....been a god send for me...I am trashing as FIGuy said...those that ARE NOT nor have ever been treated.....so frustrating....and I try not to whine...cause THERE IS NO ONE TO WHINE TO ahhahhahahhah oh I kill me hahahahhah

[nygirl7]

Well I do believe that mostly the people that find forums tend to have more problems.........which is why they come on in the first place.  A group of us obsessives though came on long before we got sides cause we wanted to learn about the disease.  But face it if you aren't having any problems that are that bad face it - you just go about your life and don't think to look up a forum to ask somebody else if they had the same things happening.  You just live your life.

My doctor thought I was crazy and that all the people on the forum were crazy. That is until the day he realized I had learned much more than he knew about the disease, it's treatment and all the current studies and stuff. Then he admitted straight out that the forum was a wonderful thing and probably the knowledge I learned from the members was responsible for me getting SVR.

The first time I said "forum" to him his head spun around like in the exorcist.  After that I learned to use the term "support group" and it made him much happier and him laugh and awful lot less at me.

[newleaf09]

You start with a forum to get direction into what you should be looking up and learning about.  You stick with a forum for the moral support.  I don't usually refer to a forum, I say "I read someplace" instead.

We've all wished that professional caregivers had to experience the meds and biopsy just to help them develop empathy.

TX has made me VERY empathetic to people on chemo and to my 87-yr-old mother, whose hgb can't stay up because she is just old.  I didn't honestly understand how crummy she felt until my hgb crashed and stayed crashed just like hers.  I will never again say "Why don't you get up and do something".

[mj6000]

I think some Dr's don't like patients who research & ask really good questions.I knew information my first Dr didn't even know (genotypes,can you believe it..He didn't know there were different types)! I of course got out of there real fast. This is a fantastic site,you just have to use good common sense and find a good Dr. Knowledge is good.

[justme53]

Forums often get a bad wrap and that's a sad thing if it keeps others away that might benefit from them...and we all know the benefits. My Dr. is very empathetic and supportive and I don't think I would be at this point without her and the staff. But I realize she is an exception to the norm.

As far as others, I think the novelty of treating has worn off, especially since I don't look really sick. When someone asks how I'm doing, I mostly just say, "Hanging in there." LOL and they look relieved. My partner is very supportive and cheers me on...but he's 4000 miles away. So I pretty much trudge on by myself.

The one hard lesson I had to learn early in tx was to ASK for help if I needed it. Those around me are not mind readers and want to help if needed but want to know "how" and when. I have to swallow my pride from time to time.

It can be a lonely road we're on...which is another benefit of forums. We've all been there!

Pam

[ArthursMom]

Oh I can relate to a lot here.  It seems like people become more supportive, the farther away they are physically!!!   I just hate asking for help.  So, you'd think that folks who know me would realize that, if I'm asking, I'm in real need.  But it doesn't go that way.  It's not out of meanness, it's just they can't understand.  I hope after going thru this that I have learned to be proactive in my support of others.

[lsaldy]

Yes I think a valuable lesson can be learned here......keep your pride in check....learn to ask for help and be more empathetic towards others......check...check...and check.......next time I would like to learn the easy way ahhahahhahhahhah

[ArthursMom]

Learn the easy way!!!   Those words do not compute!  ; >

[lsaldy]

ahhahahhahhahhah

[Rain6866]

My doctor basically said the same thing but I was defiantly finding more answers here than what he was willing to give me. This forum was defiantly the best thing I could have found. Doctors and Be in Charge dont want anyone trying to help you because you never know when someone is going to wonder in and be a wanker and give you bad advice.
You read on this board enough and you learn who to trust and who knows what they are talking about. Take that knowledge and google it for yourself.

We are not Doctors here... BUT thats a good thing because we are all Heppers and going thru or been thru what your experiencing. If it wasnt for this board I wouldnt have known what was coming. My doc basically said over and over.. its all going to be fine and easy. Then the appt before I started TX he said he was going to hit me like a mack truck...

Good thing I had all these great people to prepare me..

Good luck and God bless

[merryBe]

this is why my favorite fantasy for the last 2 years has been to require the nurses and doctors treating this to experience the tx for themselves....wah ha ha ha.

[lsaldy]

Now funny....that is EXACTLY what I was thinking too!!!!!!!!!!!!!!!!!!!! my bad ahhahhahhaha

[Rain6866]

I know what your feeling. But I couldnt say Id wish this on the devil. As many of us thats out there looks like some would become gastros and hepas.. Now that would be a good thing for all of us.

Maybe its the riba talking but I feel your pain and have caught myself wanting to wish it too. But after what Ive suffered in 14 weeks no one deserves this. God knows my Doc is horrible to begin with and so are the nurses. But THIS board and these wonderful people are the reason for my UND yesterday. So Im gonna try to stay positive and love the world. Especially the ones that try to walk all over me.

Kill em with kindness lol

Then if that dont work.. use a gun lol (joking)

[IMstacie]

Before I started treatment I was sent to a person that specialized in educating patients and family members on HCV and treatments.  She was taking interferon herself for MS.  She actually gave me this website as well as others.  I received an entire packet of information & literature and telephone numbers to call.  I know you can print out fact sheets from HCVadvocate, Janis and if you go to the Pegasys website http://www.pegasys.com/ you may be able to have literature mailed to you.

I don't think my doctor or nurses actually cared enough to learn about the sx's.  I have an HMO and I believe they just follow the medical group's protocol and just check the boxes.  I did have a PA for awhile that seemed very knowledgeable.

Hey Isaldy - we care even if no one else does!  -stacie

[lsaldy]

Thank you all.....it does help when there are people supporting and helping...it is amazing...you tell people you are on chemo for cancer and lord have mercy...they come outta the woodwork with help and "understanding"( and yes I am a cancer survivor...so I experienced that first hand) but you tell them you are on chemo for HCV and yeah whatever...you are treated like you have the common cold......this has really just awakened me to how little is known about HCV and all the complications and the sad part is a lot of these people can be infected and do not even know it...such a shame

[ArthursMom]

I've run into the "yeah whatever" attitude also.  And I haven't told just everyone I meet!  
Not only are folks uninformed, they don't even ask!  If someone confided in me about being treated for an illness I knew nothing about, I'd have lots of questions, but, no.  Doesn't work that way!

Fortunately I have a very good treatment team.  Having to go in a face an unsympathetic Dr. every month would be excruciating! My hat off to all of you that beat this thing while also having to battle a bad doc.

Here is an article about them, if anyone is interested.
http://www.com.msu.edu/communique/2008_winter/AIDSResearch.pdf

I've told Carol about this forum and she is always curious about what people are talking about.  And she appreciates that I'm informed.

[newleaf09]

I don't want the medicos to go through 48 wks of TX.  12 would be enough to get the idea.

It has definitely been a character building experience for me.  I'm much more empathetic, able to accept the idea that my job will go on without wonderful me, have a new outlook on AIDS patients and all they go through.  The thing is, I was fairly happy with my character before all this building business.

[GSDgirl]

I made the mistake of mentioning the forum to my doc and when I asked about a specific blood test his comment was, .......It took me years to learn about these blood tests that it would take too much time to explain it.  Look it up on the internet........B*A*S*T*A*R*D

Denise

[lsaldy]

Yes the almighty Docs HATE it when you show any signs of intelligence or proactive measures....they get right TESTY!!! ahhahhaha

[Rockerforlife]

A lot of doctors are drug addicts,easy access to all the goodies,and free.

[lsaldy]

That is probably a valid point for some ...yup

[stubby226]

I feel real bad for those that I had not only bad experiences with medical persons but side affects of treatment.  I also belong to an HMO and have several medical issues bedside my Hep C.  I was truely blessed with the care and attitude of people who cared for me.  The PA would call me at home to check on how I was doing.  The doc and PA would always ask about how my husband was doing and if wished to be seen for anything.  As I read about all the difficulties peopl have they may think I am from another planet to ecieve the care I did.  Non medical peopl were extremely supportive and were always asking if I needed help.  Tg=hey offerred meals, clean houe ct.  I really believe my blessings during treatment was a gift directly from my God.  May every one have an excellent day and have a day free of side affects.

[orphanedhawk]

Although there was a Hep C support group not far from me, I was in no shape to drive there and back. This forum provided an outlet for me any time of day. I've also made a some very good friends, an added plus.

Luckily, my doctor is young, computer savy and supported my finding information any way I could. He did give his opinion as to whether the info. I asked him about is valid.
There's so little known about this sneaky virus that effects people differently.

I was extremly fortunate to have a supportive husband although he thought I was nuts to do tx, and as I relapsed, maybe he was right.
Why don't you encourage your family members to read up on it or even come here!
Good luck.

[annieCinMD]

My study coordinator asked me to email a link to this forum. Probably wanted to pass it on to other patients. She has actually been really great through all this. She's not a doctor or even a nurse. She has some certification to lead up a study, and is a Medical Assistant. It is hard to relate to the sides if you're not actually having them. The study just withheld my meds until further notice because of low counts in my bloodwork. I have an upper respiratory infection that won't go away despite being on a 6 week run of antibiotics. It took low neutrophil counts on 2 subsequent visits (2 weeks apart) for them to listen to me. I have felt bad here lately!  Side effects, I have had most of them!

[jonney4141]

you know if they would sit you in their offices and go into an in depth description, and why and how and blah blah blah i probably would not of come in here, BUT the morning i was told i had hcv, and i ask what does that mean? and the reply was "mam what it means is that you are going to die of hcv" you darn right i came in here searching for some answers and i thank God for this place, cause i still would be sitting in the dark. i just thought of something? maybe they should have someone at the doctors who has gone thru the shots and treatments there to talk to the newcomers, and take their time with these people to offer compassion and helpful hints? just a thought.

[annieCinMD]

I have a close friend who has gone through tx twice and I saw first hand what this stuff did to her. Fortunately, I wasn't flying blind when I took this on. Others aren't so fortunate.

[Lynno711]

Told my nurse just yesterday about the forum.  She was very interested, wrote the info down, will check it out.  Then she says she will pass the info. along to other patients.

Especially helpful to the ones just beginning tx. lots of support here.  

Helps me a lot and all of my questions have been answered, you need to talk to people who are going thru the same thing.

[stubby226]

I used to work in a womens prision and we had hep c run rapid becsuse of the clients we housed.  There was a community health program where 2 peole who had Hep C and had been on treatment that visited our site every month.  I understood they visited other community facilities.  Are peopl even aware that a good source of information is usually your local health depat.  If a physcian is lacking in knowledge or feels uncomfortable talking about the disease and tx they should be especially tuned in to the resources available.  Most states also have a resource line where pamphlets and vrious info is available.  One thing I did learn from this forum was I needed to remember people are people and some will think they are God and their infor is only possible corect one regardless of what someone will ask and share.  I know for a fact that most people see the truth as only their version.  Human bodies are not like a fine tuned car that will take a specific part to fix it.  Human Bodies are all so different and soindivualized when it comes to tx.  We xan always say we know or understand what someone is going thru but that is always limited by the difference we each have.  I hope people needing information and support find it.

[merryBe]

on a more serious note, the operative word here is "threatened".
I've learned that some med-pros are acctually threatened by patients learning on the internet and becoming too informed.

Mine even wrote inmy chart "she's been reading on the internet" as if I was being a bad girl!

It was only after I started giving the pedigrees of the doctors and nurses I'd been corresponding with, and taking them the actual abstract or in some cases full text articles that they stopped treating me like a know nothing. Mind you, I was reading medical journals for fun before my GP got her first pimple, but in some minds it's only the degree that counts.

If I was a doctor or nurse, I'd be damnn grateful for patients bringing me ANY new research that might result in more of MY PATIENTS being cured...especiallt stuff I hadn't even heard of yet...which many in here have done!!!!!!!!!!
but hey, better to call the light darkness in the minds of some. Tell your nurse better minds than hers lay open their research in these forums and to put a sock in it.

mb

BTW, there's no way for any hepatologist worth his salt, as they now are the busiest specialists around, to keep up on all the new research. Not if they like to sleep.
One doctor who goes every year to ASSLD told me it's all they can do to just glance at the posters, there's just not time to go to every booth there is SO much new research every year...and you have to choose from hundreds of available lectures, and can only do a fraction of these in the time allowed for the conference.

For this reason alone you should not be shy at all about sharing your discoveries with your providers. (nowadays, I have nurses sneaking into my room or coming out into the waiting room even to sit and hear what I've discovered or been working on before I see my doctor.
Those that care about their patients are eager to hear any encouraging news.

mb

[122 Tactical Fighter Group]

If it werent for the computer and various forums and "groups" I would never have found out about the Interferon/ribavarin clinical trial that most likely saved my life.......I knew a great deal more about the therapy than my gastro Doc did......at least he did get me enrolled in the trial.     UND after 13 years - - - let them laugh......

[lsaldy]

Congrats!! Way to show em!!!!!!!!!!!!! :)

[Optimistica]

agree with nygirl7 - my 24 weeks last year were 'bearable' so never needed to find somewhere like this (and was congratulated by my docs) but now my hubby having LOTS of problems so i'm grateful for any tips. just reading about other people with side effects i didn't get means i can hopefully make life a bit easier for him

[alagirl]

NYGirl said - A group of us obsessives though came on long before we got sides cause we wanted to learn about the disease.
----------------------
I may resemble that remark ;)


All - I had uncommonly good response about the forum during my medical care.  In fact, my physicians let me use meds in certain dosages because other patients here were doing it.  They also consulted with a specialist I found out about via this forum.

Isaldy - a lot of people have very difficult side effects with treatment.

[lsaldy]

Bless you all for the support I am receiving......I KNOW I am not bonkers or a Hypochondriac ahhahhaha and I have extensive knowledge in the medical field, so it perturbs me to no end when I am treated like an uneducated piece of ****...good to know there are others that are proactive and assertive about their health...I say too bad DOCTOR...it is My life not yours!!!  and dang it...I will destroy all who may jeopardize it!!!! oh lord....riba rage already??????? ahhahahhahhahha kidding