MY HOSPITAL STAY

HEY GUYS IVE BEEN IN THE HOSPITAL FOR 4 DAYS   ....I COULD NOT BREATHE AND VERY DIS ORIENTED AND FEVER ...BUT I WENT TO WORK AND FELL OUT AND I HAVE ENCEPALITIS...THEY TOOK ME OFF MEDS AND PUT ME ON SOME SERIOUS ANTIBOTICS AND GAVE NPEGON AND A BLOOD THINNER.....IM STILL WEAK BUT WBC IS UP TO 1800....JUST WANTED TO LET EVERYONE KNOW.....P.S.   THEY PUT ME BACK ON MY MEDS

[Fl_Gator]

glad you are out of the hospital and doing better...I'm new to the forum and have a million questions. I was diagnosed HCV 1b and can't seem to learn enough from everyone here. What caused the encephalitis? what meds are you on? did the meds cause the enceph? or was it the hep c or something else? Thanks for any info you can give...

[alagirl]

I am so sorry and glad you're back.  I went off my tx meds a couple times due to hospital issues, one was early in my treatment I think, and it was still successful so hopefully yours will be too.

[merryBe]

when did you start tx....what is your weight and what dosages are you on?
there's a reason I'm asking.
mb

[kimmypoo2]

my riba is 1400 and shot 150mcg and my weight is 201 used to be 232

[kimmypoo2]

my wbc got dangerlously and i could fight anything ....no tx drugs didnt cause it ... i will gladly point you to soon great teachers ...meki .....charm.....merrybe.....childangel...they will help you ...its been nov 07 i was diagnosed and started tx on 3 20 08 and in geno 2 and treating for 24wks as soon as im able i will be contacting you

[merryBe]

your riba dosage is high for that weight, and would be the culprit in a big blood tank as you are describing...

1200 should be your dose at that weight, no more....women especially, even if larger still have hearts, lungs,, etc livers 1/3 smaller than a man's, and smaller bones hence less marrow as well..... so your tolerances are less for all drugs than for most men. Far too many docs take neither the weight nor the gender into consideration when dosing.

I'd want to know is a GI or a hepatologist treating you...and why did they choose to go beyond SOC with you. Sometimes they will for retreaters...but the goal needs to be to also keep the person on the tx long enough for it to work,,,and burning up all the blood cells hardly helps that happen.

[charm27]

Feeel better soon.  Im sorry you had to go thru such an ordeal.
Bummer!

Hang In It will get better.
Unfortunately the tx can cause some nasty things for some.

Warm wishes
Charm

[TonydNJ]

Hi, I new to this forum, signed up last week been on tx for 7 weeks. My question is about the breathing. did this all start once you started treatment. This is the main problem i have been having, breathing problems and especially with ears clogging, i've had chest xrays, cat scans and everthing is ok. I was also just recently told i now have a leak on the right side of my heart valve, which all these problems started once started treatment. Can you explain the symptoms you were going through with the breathing problems and how long did you have these sypmtoms. thanks Tony

[kimmypoo2]

WHEN YOUR BLOOD COUNTS GET LOW....SHORTNESS OF BREATH IS A SYMPTOM BUT OUR BODIES USAUALLY  WILL ADJUST...I HAD THESE SX ABOUT 3 DAYS.....AND YES YOUR BREATHING PROBLEMS IS DUE TO YOUR HEART PROBLEMS.....MAKE SURE YOU FOLLOW UP WITH YOUR DOC ...THATS A SERIOUS HEART PROBLEM....TAKE IT EASY KEEP IN TOUCH AND LET ME KNOW WHAT HAPPENS
      BIG HUGZ
     KIMMY

[TonydNJ]

Thanks for responding. i see my doctor tomorrow regarding the heart issue but i need to see the specialist on this which is the cardiologist. just concerned that if now i have a heart issue if i should be on the interferon which i have read many places that you have to be careful. Anyhow i'll hang in there for now and see what they tell me next. Thanks Tony and hope you are feeling better.

[Bill1954]

Kimmy- Sorry to hear you are having such a rough time dealing with your treatment. Listen to your health care providers, and don’t let anyone on this forum suggest that you reduce your ribavirin dosage without verifying it first with your doctor.

Good luck,

Bill

[Trish77]

merryBe, I don't agree with you at ALL on your dosage recommendations for ribavirin.  If not for the drug trial, I would have started with a dosage of 1400mg of ribavirin, doctor prescribed, and my weight is 160, give or take.  That was reasonable to my doctor and reasonable to me.   If ribavirin dosages are too LOW, they endanger treatment outcomes.  You can check any number of studies that show the difference in outcomes where the lower SVR rates are consistent with lower ribavirin rates.  Certainly not the only factor but definitely enough to show that the ribavirin dosage needs to be high ENOUGH.  Common thinking these days is to go with higher dosages of ribavirin as long as the person can safely tolerate it and dose reduce if necessary and only when necessary, based on response to treatment.  

You mention gender and weight, however race plays a role in this too, as African-Americans have a tougher time responding to treatment.  That is possibly another consideration in the dosage that Kimmy's docs settled on. Based on Kimmypoo's lovely picture, I'd say that gender is a consideration for her docs here, at least I hope so.

Here is a link to a study that shows the positive impact of higher dosage / weight-based ribavirin particularly for those who are African American and for those in higher weight categories.  

http://www.endonurse.com/hotnews/weight-based-dosing-ribavirin-hepatitis-101.html

I think there are a number of indicators that would explain the ribavirin dosage level that Kimmypoo is on.  Personally, and this is just my own personal opinion, I'd be a little concerned if she were on less ribavirin than she is UNLESS her treatment responses warranted it.

Furthermore, the fact that they put Kimmypoo on neupogen indicates that she has an issue with her white blood cell count which is what interferon has an impact on.  Ribavirin impacts primarily the red blood cell count.  

In some ways, we're all at a certain amount of risk with a compromised immune system while on treatment.  It's just to keep it all in perspective as I'm learning for myself these days.  You get your blood counts monitored, you take the appropriate precautions - for myself, that means limiting my exposure to sick people, using sanitizer after I've been handling other people's keyboards - something I do alot of in my job, taking the appropriate vitamins and supplements (C, folic acid and B12 in MY case only) and just taking good care of myself.  Beyond that, it's the luck of the draw.

Kimmypoo:  I'm glad you've recovered and are home.  I know this hasn't been easy for you and please hang in there, darlin, all the way to SVR.  I echo Bill's advice to you.

Regards,

Trish

[Trish77]

What I meant to say was... "based on Kimmypoo's lovely picture, race is a consideration for her doctors" .. but I'm sure y'all figured that out.  Just saying.

Trish

[Trish77]

Upon reflection, I think it would be more accurate to replace the word "Common" with "Newer" in the following sentence:

Common thinking these days is to go with higher dosages of ribavirin as long as the person can safely tolerate it and dose reduce if necessary and only when necessary, based on response to treatment.  

(sorry for multiple addendums....the perils of going back to check your posts AFTER you've posted them)

[kimmypoo2]

THANK YOU...AND YES YOUR CORRECT MY RACE  AND WEGHT WAS A BIG FACTOR IN MY HEP DOC DECISION AND YOUR CORRECT AFRICANAMER ARE ARE HARDER TO TREAT USAUALLY AND IM BLESSED TO BE GENO2 BECAUSE  MUSTAFRICAN AMERICANS ARE GENO 1 AND THANKS MERRYBE SO MUCH FOR YOUR ADVICE AND YOUR ALSO CORECT THIS ARE BIG DOSES FOR A FEMALE BUT MY RACE AND WEIGHT BEFORE TX WAS THE REASON FOR THE RIBA BEING SOO HIGH AND IM SO THANKFUL FOR HAVING FRIENDS ON THIS WEB SITE THAT CARE ABOUT THANKS TO ALL

[merryBe]

did you read her symptoms??

I've seen too many women in here tank.

A high dose is not possible for everyone and particular attention to CBCs and kidney function is critial.
2 out of 10 people in the Lindahl study suffered kidney shutdowns at the higher doses.
Mind you almost all of them also needed Procrit... It has to do with clearance, and she is at greater risk being African American as the kidneys and blood pressures seem more effected and apt to suffer damage within that community. No one knows why they are more susceptible to this, or sickle cell, but they are, just as other groups have other genetic anomalies.

My opinion is just that, my opinion. Yours is yours.

Kimmy is the one who just spent several DAYS in hospital with heart issues etc.
It's up to her and her doctor to consider what dose is best for her.

Kimmy neither anyone in here, nor your doctor is God.
If I were you I would talk the issue over with him, and get a second opinion also.
At least if you were kept on weight based therapy until your blood normalizes and your symptoms become non-life threatening it would be wisdom.

BTW, I weighed what you did at start of tx and was given 1200 not 1400. 180 INF here.
So obviously different docs use different scales to figure out dosages.
It doesn't mean there should be no room for adjustment....and obviously a prolonged hospital stay means you had severe complications, and this should be looked at.
just my opinon.
mb

[merryBe]

could you elaborate on what they think caused your encephalitis? thanks

[Bill1954]

MerryBe, hang on to that day job :o).

Bill

[merryBe]

Hi, here is a comprehensive overview of anemia, heart/lung/kidney effects.

it should be read by every patient so they will know what to look out for.

http://www.rxlist.com/cgi/generic/rebetol_wcp.htm#W

[Trish77]

To: trish
did you read her symptoms??
---------------------------------------------
To: merryBe
did you??

I presented sufficient information to indicate that not only had I read her symptoms but that I read your response to her symptoms as well.

Since when is the brain in someone's chest? I didn't notice any heart issues mentioned. Encephalitis is an inflammation of the brain caused by a virus.  Hence the compromised immune system, the white blood cell issue, the neupogen, etc.  

I think I said enough in my post and I'll let it stand. And so that I can stop biting my tongue so bloody hard...I'm gonna get the heck outta here.

[kimmypoo2]

I THINK SHE GOT MIXED UP ...TONY HAS HEART ISSUSES....

[Trish77]

Yes, think you're right, kimmypoo.  Stay well.

[merryBe]

this is the trouble with trying to give people info about their tx when so little history is known.

my assumption, right or wrong, and based on the fact that I've witnessed them send several women home the next DAY whose blood tanked bad...was that their might be some heart or kidney clearance issues.

Bloodthinner was the thing that made me wonder...the rest does not explain why they put her on that....along with her breathing issues which we know can be reaction to tx but also can mean pressure around the heart sack. For that matter any encephalitis can effect heart rhythms.  Who can know these things with no real information.
And let's not rule out that were she to have even a heart murmur this tx can set things off...

Kimmy, I got a horrendous infection too that I think was cause by tx...throughout my lymph system.
I'd really encourage you to go read through the list of warnings and also watch your sugars while on tx...INF can push one into diebetes (diabetes).
It pays to be informed and watch your body, knowing what symptoms are pretty much standard and par for the course vs. which might be more or even life threatening.

reading through how the tx can effect each body system is all I was suggesting people....not saying she had heart disease, but guessing there might have been some heart concerns if they put her on blood thinners and kept her four days... but then....I see some you all know much better : )))))))((((((((( ?
anyway, nuf said.

[merryBe]

Trish, obviously Kim had problems, that was my whole point in reviewing the dosage, with big problems you review, regardless of race.

there are several studies suggesting AAmericans have lower clearance success, you are correct, BUT the studies did not include anough data that included things like dose compliance, age, diebetes (diabetes), or even in one study Hispanics were included...and most were done with out double biopsy at beginning and end of studies...ergo, I think some faults can be found with most of the studies done.
As the research below also concluded, So it's not just my opinion but that of other researchers in the field.

Certainly there are concerns, but how you do a study is important, as is how many or few people your actually study before reeaching conclusions.

below are some interesting studies. I would not advise Kim to get unduly scared by the numbers in what are ADMITttiedly limited and inconclusive studies.
I'd rather see her take a dose she can tolerate...and go onto clear and not worry about making her deathly ill because of a couple of very limited studies still being disputed.


http://www.natap.org/2006/HCV/041906_02.htm

[Magnum]

Hang in there. We are all with you. You will get through this...

Magnum