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Posted 4/10/2013 6:49 PM (GMT 0)
Just came home from the Transplant Clinic at MGH. I have now gone 16 months undetectable. They are raising my prograf from 2 mg. in the morning and 1 mg. in the evening, to 2 mg. am.+ 2 mg. pm.. They have been keeping my prograf levels low (around 3+), as a high level helps the virus multiply. Now that I've been undetectable for a while, they want to make sure that I don't have a future problem with rejection. Also, I'm only doing blood work every other month for the future. I will still have a MRI yearly.

The nurse practitioner said that in last weeks meeting with all the docs and nurses in the clinic, they were told that there are now 20 treatments ongoing for knocking out Hep C. They are very excited about this. I am as well. Even though my results are good at present, there's always the chance of regressing. Knowing there are going to be other, less invasive treatments coming on line, makes me feel like there is little to worry about should the Hep C come back again.
Posted 4/10/2013 7:02 PM (GMT 0)
         fantastic david!  and i totally agree with you.  if i relapse, i am not really worried about retreating.  well, a little

                              barry

Posted 4/10/2013 7:11 PM (GMT 0)
David, glad you posted today. And that business about all those trials...well, that is great news for Mike.  He's still being told to WAIT.

Best,


Carol

Posted 4/10/2013 11:13 PM (GMT 0)
 Good news David !!!

 A. Ziffle

Posted 4/11/2013 12:01 AM (GMT 0)
I hope one of them has my name on it!

Hugs,
Connie
Posted 4/11/2013 12:20 AM (GMT 0)
oh what great news.. and me too Connie... it would be named Hep93.. me thinks..

Sandia
Posted 4/11/2013 1:51 AM (GMT 0)
Great new David!

Emma
Posted 4/11/2013 2:29 AM (GMT 0)
Glad to hear things are going good for you!
Posted 4/11/2013 2:46 AM (GMT 0)
Well that is wonderful news, David! And thanks for the info about the Prograf helping the HepC virus to multiply - I didn't know that. When they lowered Robert's Prograf last week, they just mentioned that it was to help with the HepC issue, but they didn't go into detail. I wasn't feeling well so I didn't ask any questions, which is unusual for me! It's also good to hear about the new treatments coming soon.

Have a peaceful day.
Posted 4/11/2013 4:04 AM (GMT 0)
I take 1/2 mg twice a day and it keeps my Prograf levels at 6-7, which is where Mayo wants it. Labs tomorrow, so I'll find out the current level.

Hugs,
Connie
Posted 4/11/2013 12:29 PM (GMT 0)
Mike is a 1mg twice a day on the Prograf and he too stays between 6 and 7 on the blood tests.  His tremors are still horrible, worse actually.  David/Connie, do you have the same?  We are asking at TP clinic today.  Mike was always the one in our family to take out the splinters and fix the tiny screw on your eyeglasses...not any more. These days he would NEVER order soup at a restaurant!  C
Posted 4/11/2013 12:52 PM (GMT 0)
My level was around 3-4, but I have to assume that with the addition of another 1 mg. it will rise a bit. Yesterday, they got me hooked up online so I can view all of my labs and procedures back to 2005 when I first began going to MGH. That was when I had my hemorrhage.

As far as tremors, they went away when my dosages were lowered, about 6 months after the transplant. It does make my toes feel a little numb for an hour after it kicks in.
Posted 4/11/2013 8:29 PM (GMT 0)
Yes David, love that patientgateway site, my brother and I both use it, as most of MY docs are at Brigham's, an MGH parter as you know.

I am so happy for you that you are undetectable, that just made my day, as I'm sure it did yours :)

So nice to hear good news and you sure are deserving of that, keep on keeping on!

Hugs,
Posted 4/11/2013 9:05 PM (GMT 0)
I have 3 logins unfortunately for my online documents. My regular doctor is at a smaller chain of clinics, they use a version of mychart. Then I go to see my hep doctor at Minnesota Gastro, they use a site called nextmd. It looks more like an email box than anything, you get labs and letters from your doctors. Lastly I go to Abbott Northwestern in Minneapolis to see my surgeon and sten doctor. They use mychart there. Even though it is a pain having 3 websites to view documents, I must agree that it is really nice. I loved being able to see my labs later that day or the next morning.

So are you have a BBQ party David for undetectable, maybe Ziff can provide the pork products.
Posted 4/11/2013 9:25 PM (GMT 0)
darn that Ziffle, he won't give up his ribs. They've got to be tasty, as they were marinated in Jack Daniel's for years.
Posted 4/11/2013 9:46 PM (GMT 0)
MMMMMM RIBS

I am so hungry.
Posted 4/13/2013 3:30 AM (GMT 0)
Though my BUN and creatinine are near normal now, they have increased the Lasix to 20 mg a day, instead of every other day, since the pulmonologist said the chest CT showed a little fluid in my rt. lung.

Hugs,
Connie
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