Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Haven't been too active here lately. I'm in the most foul mood. If no one reads this, I won't be offended, so don't think you have to post comments if you read all of it.
I'm so fricking pissed off. I moved from one side of the state of Texas to the other so that I could be on a trial. No exageration there as anyone who has driven across Texas knows. It's big. Real big.
I went to the screening on the 5th. Everything was looking like a go... until the Nurse practioner comes in and looks inside my mouth. I felt like a horse at auction. I thought she might check my hooves next. Seems I have a spot on the inside of my mouth. It was extemely humilating to me. After she left the room I could hear her talk to the trial coordinator about me outside the door. The suggestion was that I go to an ear, nose and throat Dr. to get the all clear from him. Um, I'm going for a trial because I have no insurance. They then suggested I go to the ER.
I went today to a clinic only to find out I don't qualify because I have not been a resident long enough. From the time you sign consent forms for a trial you have 28 to 30 days to start the trial.
I will now have to wait until the 16th to see the Dr. from the trial to have him look at me and decide whether or not I can be on the trial.
I could have posted this on my journal. I think I did. I don't know because as I said I'm in a foul mood.
Now I feel awful for ranting. I know that some of you cannot even get on treatment.
I'm so fricking pissed off. I moved from one side of the state of Texas to the other so that I could be on a trial. No exageration there as anyone who has driven across Texas knows. It's big. Real big.
I went to the screening on the 5th. Everything was looking like a go... until the Nurse practioner comes in and looks inside my mouth. I felt like a horse at auction. I thought she might check my hooves next. Seems I have a spot on the inside of my mouth. It was extemely humilating to me. After she left the room I could hear her talk to the trial coordinator about me outside the door. The suggestion was that I go to an ear, nose and throat Dr. to get the all clear from him. Um, I'm going for a trial because I have no insurance. They then suggested I go to the ER.
I went today to a clinic only to find out I don't qualify because I have not been a resident long enough. From the time you sign consent forms for a trial you have 28 to 30 days to start the trial.
I will now have to wait until the 16th to see the Dr. from the trial to have him look at me and decide whether or not I can be on the trial.
I could have posted this on my journal. I think I did. I don't know because as I said I'm in a foul mood.
Now I feel awful for ranting. I know that some of you cannot even get on treatment.
Hang in there.
I remember my desperation in trying to get into a trial. 250 mile round trip to the site each time. I wanted nothing to eliminate my chances for treatment.
The stress of the move, all the changes, anxiety about the trial, I'd be ranting too!
You've come this far. It will work out. They just you to be clear for the trial.
I used to live in TX. I know it's less distance from Texarkana to Chicago than it is from Texarkana to El Paso. It's true! That's how very BIG Texas is!
In retrospect, your move may have been a little premature. I've heard from Trial folks that they'll call you in to screen (and they want you to move fast), then you go back home. Over the next couple of weeks, they'll analyze your data & call you back to initiate the trial if you passed their screening. I guess you get a "Dear John" letter if you don't.
In retrospect, a better approach may have been to get a flight to the screening location (SW may be cheap) so you could've returned home to wait for trial approval. Then, you'd be at your free clinic in your home town. If you are ultimately denied, God forbid, then you would still be at home and could search for a new trial.
I understand this is after the fact. I sincerely hope you can get the spot situation taken care of. I can't imagine what they're afraid of (cancer is the only thing that comes to mind) but sending you to an ENT? A specialist is expensive & the wait time to get in is longer. I hope the trial doc thinks all is OK on the 16th and you do get in. I hope you're not told, "I'm a hematologist. I can't determine what the spot is and you must see an ENT."
As a back-up, could you go to the local emergency room & ask them to look at the spot? Tell them it bothers you (well, it does now, right?). Ask the ER doc if they could call in the resident ENT who could write you a note to give to the trial doc. It might worth a shot.
Or maybe the spot will simply disappear in a few days. I get "spots" in my mouth if I eat food that's too hot. At times, I get occasional bumps in the back of my throat (from stress I think).
The trial people might be overly overly cautious but remember that trials are very, very competitive, so you'll have to do all this or you will be excluded. Unfortunately, they hold all the cards.
Best to you in your trial. I truly hope it works out for you, whatever you decide!
...
I need more info honey bun and I'll get started researching. I'm pretty good at researching stuff, and I know the others here are excellant researchers too! If there's help there, and I bet there is, we'll find it!
So sorry that this wrench got thrown into the mix. You didn't need that right now!
By the way, what kind of spot is it? Is it like a blood blister?
I'll be waiting for more info like where the hell are you? What city in TX?
Love,
Kelly
Would you want to take drugs that were tested in a trial on peeps who were not "well"?
Be thankful they DID check you.... What if it is more? We never know.
One week more is apparantly the plan He has for you to wait.
I drove to Dallas numerous times to get in a trial.
The drive was 350 +miles r/t. I Did it 3x in one week alone.
Then after initially being accepted and genotyped for trial I was told trial was full. God had other plans for me. Just like you having to wait...
Where are you in Texas? I am nearby Austin area...
Perhaps I can be of assistance to you.
There may be a free clinic in your area, or the ER does have Otolaryngolists (ENT) on staff at all times.....
Let me know if I can help.....
Hugs jiblet
That being said it is still a big kick in the cahones to jump through so many hoops to be rejected. That is never nice!
Hang in there Bago, other opportunities and perhaps the right one will come along soon!
xoxooxoxox
On a positive note, even thought the spot has caused the delay, it is good that you get it checked out now rather than later.
Keep us posted.
It's been raining on Galveston, for DAYS! I'm sure all this rain and being stuck in the bago aren't helping my mood. I'm an outdoorsy kinda girl and damn it I wanna go to the beach, baby!
I need to remember all my blessings. It sure wouldn't hurt to see my grandkids. Little shits. I love them. I'm the best Mimi in the whole wide world. Just ask them!
Thank you guys. Thanks for being here.