Hepatitis C Community
Introducing the Hepatitis C Tracker
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

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Introducing the Hepatitis C Tracker

Hi,

We're pleased to announce the Hepatitis C tracker, the next in a series of Personal Health Applications (PHAs) geared towards helping our members with keep track of their health metrics, symptoms, treatments, test results and events. We developed the Hepatitis C tracker with feedback from several of the members from this community and we're excited to be able to make it available. The tracker will allow you to keep track of your daily treatments and symptoms specific to Hepatitis C.

You can access the Hepatitis C Tracker by clicking on the "Trackers" link at the top of the community, or on the "Trackers" tab on My MedHelp.

We plan on adding more functionality to the Hepatitis C Tracker over the next few weeks and would love to get your suggestions and feedback. If you want to track a specific treatment or event, let us know. Please post your comments in the MedHelp Suggestions community, accessible via My Shortcuts.

MedHelp
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29 Comments Post a Comment
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Avatar_m_tn
Hello

I just tried this new tool, an found out that it needs improvements.
For ex, when I entered my ALT value, prior to beginning of my treatment (108) I get this error saying that ALT must be between 0 and 60, which is a mistake.
Obviously for many patients, ALT is sometimes outside the normal range, ocasionally very high.
You need to go back to the "drawing board" and provide members with a valuable and usefull tool, otherwise just remove it from this webpage.
Similar error for the viral load field (message saying it needs to be between 0 and 100)
Is this logaritmic value? If yes, please specify the measuring units, same for all fields.

Thank you
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144210_tn?1273092382
a column for WBC count and Platelet count would be very useful too.
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10947_tn?1281407852
Hi,

Thank you for the feedback. If there are other issues beyond the ALT value issue, please let us know and we will correct. As far as we know, this is the first of it's kind, so there are going to be a few things we'll need to adjust. We're dedicated to getting it right though, so keep the feedback coming.

MedHelp
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144210_tn?1273092382
Don't miss the viral load issue. It needs to be open ended or with a cut off of 50 million or so. We appreciate this by the way.
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476246_tn?1310999221
I haven't looked into it, yet. Am still pre tx. I just wanted to say that it's a great thing you are doing and that this site is the best. Thanks for all your wonderful work.

Marcia
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476246_tn?1310999221
So, I've just been on the tracker and it looks great. I do have problems filling in most of my test results, as they state numbers one has to comply to. Maybe the numbers we use in Europe are different. For example,  Albumin must be between 0.0 and 5.0. Here in Denmark normal Albumin range is between 39,6 and 51,1 g/l. And it is like that with some of the other things, too. Billrubin must be a number between 0.0 and 1.5, here normal range is between 4 -22.  ALT is the same problem.

I guessSo I wasn't really able to put any data in the tracker.

So maybe it would be good to eliminate these restrictions all together, so ppl all over the world can use it.

Marcia
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217229_tn?1192766004
I think WBC platelets --- HGB ---  and CBC results should be listed.

I also think that you should have a checkbox or listing for symptoms felt or observed.
(Example: Brain Fog, Temperature, Chills, Fever, Muscle Aches, Body Pains, Headache, Dehydration, breathing problems, chest pains, upper body pains, lower body pains, difficulty walking, nausea, rash(es), itching, loss of hair, hair growth, facial hair growth, eyelash growth, mental high, mental low, etc.) It is very important to be able to keep track of the side effects - because those can be what determine how you respond both mentally and physically to the treatment - or determining IF you should treat at all.

I also think amount of water consumed would be a good help for those needing assistance in drinking more water.

HCV ---- and some other diseases have such multifaceted issues that it is very difficult to hit each one.

Those with COMBO diseases such as HCV and HIV - is there a way for you to link the 2 trackers together so they don't have to do 2 separate ones?

Thanks for trying to make something so folks can keep ahead of themselves - I think it will be helpful in the long run.

But seriously - side effects on that tracker would be something that would GENUINELY be helpful.

Meki
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476246_tn?1310999221
Just wanted to tell you this is what they have listed under symptoms. You just need to click on every line and another check box comes up... Or you press on the arrows up and down. Marcia


Tender abdomin (abdomen):
Chills:
Fatigue:
Fever:
Headaches:
Hypothyroidism:
Jaundice:
Joint pain:
Muscle aches:
Nausea:
Skin rash:
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144210_tn?1273092382
It would be nice if we could plug in numbers from past testing. Say back from Jan 1st.
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422881_tn?1257607179
Thanks MedHelp.

Needs some work, but a big step in the right direction.

I thought me and gauf were the only ones interested for a while.
http://www.medhelp.org/posts/show/520322
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476246_tn?1310999221
You can go to the top of the tracker and go all the way back to June 2006.

Marcia
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476246_tn?1310999221
Just a little detail. In the chart bilirubin is spelled wrong. It says billrubin.

Marcia
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476246_tn?1310999221
RBC, hemoglobin, RBC, iron, ... I think all the important ones which have to be monitored while on tx should be listed, as it determines, when we should be on rescue drugs or not.

Marcia
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422881_tn?1257607179
Suggestion for Treatment check boxes:

IFN
PEG-IFN Alfa2a
PEG-IFN Alfa2b
Ribavirin
Trial medication
Herbal treatment
Have not started treatment
Have finished treatment

I like to see the correlation between alfa2a and alfa2b and symptoms....as well as success rates.

MH….should we post suggestions here, or use the suggestion tab on the tracker?
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422881_tn?1257607179
Nevermind my last question of where to post suggestions. I just re-read the original post.
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217229_tn?1192766004
Yeah - it's definitely a GREAT step in the right direction.

Marcia  - THANKS mucho much for pointing that out!

Meki
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476246_tn?1310999221
your welcome
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10947_tn?1281407852
Thanks for all the suggestions.

NashPred - Feel free to post the suggestions here or in the MedHelp Suggestions community. If you have feedback, we'll try to find it wherever you post it.

We'll replace the current Pegylated Interferon with PEG-IFN Alfa2a and PEG-IFN Alfa2b. We'll also add Trial Medication as a treatment option. We probably won't be adding "Have Not Started Treatment" as we'll assume any chart that doesn't have treatments selected belong to people who have not started treatment. We can add an "Event" instead of a "Treatment" option for Finished Treatment.

Mirceani - The unit for viral load is millions IU/ml, so we support up to 100 million IU/ml. But you're right, we should add labels for all the units for all of our trackers, but in the meantime, you should still be able to track viral load. We'll look into changing the maximum for the other values.

Marcia2202 - Good catch on the spelling of "bilirubin". We'll get that fixed in the next release. As for the European values, I don't think these values are actually different. Even labs in the U.S. use different units of measurement. Some use g/L (which is the unit of measurement used by your lab) and some use g/dL (which is the unit of measurement used by the lab associated with one of our doctors). In order to convert your measurements from g/L to g/dL, just divide them by 10. As suggested by mirceani, we need to add the units of measurement to the data entry forms, so you all know what the units are. We'll also look into allowing you to enter data in other units of measurement (like g/L) and then calculating the correct conversions on our end. But in the meantime, just divide by 10 and you'll be able to use the tracker.

Meki - We'll add the request for blood count metrics (WBC, RBC, platelets, iron, HGB) to the list of requests.

Keep the suggestions coming, and we'll write back when your feature requests are live. Thanks!
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186344_tn?1278268245
ALT and AST are at least in Sweden measured in microkat/liter (ukat/L). In the US these enzymes are measured in units/liter (U/L). I hope I am correct in saying that 1 microkat equals 60 units. I had trouble finding the conversion formula. Finally found a doctor stating this at a poker chat site!
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186344_tn?1278268245
So 6 weeks post tx my ALT was 0.20 ukat/L or 12 U/L, which is looking darn good to me!
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Avatar_f_tn
Uhm could you add infergen also?  Different than Peg and Pyg,

As always thanks for your help and for helping us with such great tools
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483814_tn?1214315080
I start treatment tomorrow morning.  This might be useful.
Daniel
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476246_tn?1310999221
In Denmark they use U/l  for ALT and AST, g/l for albumin. I guess they don't even use the same measurements in the Scandinavian countries. Would have thought they were using the same, as they work quite closely with each other.

Marcia
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476246_tn?1310999221
I have checked the measurements you are using and most of them don't correspond to what they use here in Denmark I found a site which has all the conversions for clinical data and will have to translate my results into the units you use. I think that whatever units you use, there will be some ppl having to do the math. So I would suggest you post the conversion table SI Units for Clinical Data. I found it on

www.unc.edu/~rowlett/units/scales/clinical_data.html

I don't know if you are allowed to just use it, as it is copyrighted.

How Many? A Dictionary of Units of Measurement
© Russ Rowlett and the University of North Carolina at Chapel Hill

Maybe one could make a link to it.

Marcia

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476246_tn?1310999221
Now it's working great, since I have done the conversions.

Could you please add brain fog to the symptoms, as for some of us it is one of the worse.

Marcia
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476246_tn?1310999221
I've just noticed, that the genotype automatically resets itself to Genotype 1.

Marcia
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Avatar_f_tn
New computer, new forum, new tracker, = x US dollars.  New friends...priceless.
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264121_tn?1313033056
This is really exciting!  ;)  

I am so looking forward to working with this new modality.  Medhelp, you guys rock!

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10947_tn?1281407852
Hi Everyone,

We wanted to share with you a few of the new enhancements released yesterday regarding the Hepatitis C Tracker.

ALT & AST values - We increased the maximum values allowed. You should now be able to enter in your ALT & AST values.

Units of measurement - We've also added labels for the unit of measurement so you can clearly see what units to enter for your graphs.

New symptoms - We've added several of the symptoms requested, including brain fog, breathing problems, chest pains, itching, hair loss, and hair growth.

Treatments - We've added several of the requested treatments, including PEG-IFN Alpha2a and Alpha2b, Trial medication and Infergen.

Events - We've also added a new event called "Finished Treatment". When you're done with treatment, you can check this box to let everyone know.

We're still working on your other requests, so stay tuned for more.

Thanks,
MedHelp
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