Forum Style



Hope all are well.

Liver Tx 3 years ago,  Was able to get off Heart Tx list 1.5 years ago.  All awesome.

Docs added Myfortic 1.5 years ago and got Shingles 3 weeks later.  No reason they added it.  Said "protection" but doing great on 2 mg Tac bid. So a year ago the nerve pain and general brain fog intensify.  The pain now is everywhere, including migraine, etc.  Being on Tacro it is super challenging to find any relief that would not be counter effective to my Tx health.  Anyway, I am working on it.  

The challenge is I have had referrals rejected from 3 docs (so far) as people are not very educated on Fibro, then add my Tx and docs get nervous. A quality of life issue as my Tx is #1 and I base my diet, etc. around it. Anyone have any experience or related long term side effects.  My Tx team has been severely lacking at addressing, acknowledging it.  I end up at pain docs who want to give me drugs I cannot take lol.

Still working on it.

You need to be a member of to add comments!


Email me when people reply –

Facebook & instagram

TransplantBuddies & Friends Facebook Group

TransplantBuddies & Friends

Transplant Stories

Members Stories



Lung Transplant Foundation


        Organ Donation Surprising Facts

Latest Activity

Kidneyboy replied to Tash's discussion Cyclosporine
4 hours ago
Tash replied to Tash's discussion Cyclosporine
6 hours ago
Kidneyboy replied to Tash's discussion Cyclosporine
8 hours ago
Amit Srivastava and Kalyani y are now friends
10 hours ago

Planetary Biosciences for Cystic Fibrosis

Please Donate for CF Patients