Thursday, August 14, 2014

Update on the New Norm

2.5 years post-transplant, here's my recovery status:


I had a lot of acute GVH of the skin, and almost no other GVH. They say to avoid rash on over 50% of your body, but I was regularly over that. The rash was red, had bumps, but only itched a little. It did not hurt.

To get rid of it, we had to go up to 30mg of Prednisone, a steroid, in the summer of 2013. We've been easing down ever since. Because I had pneumonia in January, 2014, the doctors have been more aggressive in trying to reduce my immunosuppressives.

As a result, I am now at 7.5 mg of Prednisone and a half gram of Tacrolimus (ProGraf). The doctors dropped my antifungal (Voriconazole, and used to be Fluconazole) at the last appointment, July 25. They said that would reduce the immunosuppressive effect of the ProGraf, which is already at an amount they call minimal.

I still take an antibiotic and antiviral every day as a backup because of the mild immunosuppression. I also take Bactrim (another antibiotic) three times a week to prevent pneumonia. Obviously, that didn't work, but I'm still taking it.


I have been on Coumadin (Warfarin), a blood thinner for almost a year because I had my third post-transplant blood clot last fall. It's also the third blood clot of my life. Those can be painful.

Throughout 2013, and maybe some of 2012, I had some tingling, numbness, and pain (neuropathy?)  in my feet. It got worse throughout 2013, then was steady in 2014 until April. In April, my ProGraf was dropped in half to the 500 mg I take now. My feet began improving immediately, and my blood thinned to an almost dangerous level over the next couple weeks. We had to lower the amount of Coumadin I was taking.

I think the ProGraf was thickening my blood, causing the clots when I didn't take Coumadin, and combatting the Coumadin when I did. Dropping the ProGraf made the Coumadin work much better.

We dropped the Prednisone again 7/25, and now, just 3 weeks later, I have no feet problems. They feel great, and I am back to walking and even running some. I love it, though the year of foot pain that was increased by walking has left me weaker and less motivated.

I am pressing through anyway.

I am also getting stronger faster than I was. Yay! I'm still not back to my old average strength self, but I'm close.

I did a plank (pushup position but with elbows on the floor rather than hands) and held it for 90 seconds the other night. That's pretty good for an old guy like me. The sad part is that I can't blame my potgut on weak stomach muscles. I am just fat.

Only 20 pounds to lose, though.

Chronic Fatigue Syndrome

After 2012 (transplant performed 1/17/2012, very thorough preparation, including radiation, full body and brain), my problems with fatigue were much better. Really, I was doing somewhat okay even 6 months post-transplant, in summer of 2012.

I'd say throughout 2013 I had what I call "fatigue days" almost weekly, maybe every two weeks. I dragged, and trying to exercise just made it worse. On those days I had no appetite, and usually me energy and appetite both returned at the same time.

The fatigue days still happen, but more rarely, and often I can point to a cause, somewhere that I've overdone it physicall or mentally.

I can work 40 hours per week at a desk with no problem.

I own a distribution business. We moved our warehouse between Christmas and New Years, Dec. 25-30, 2014. On one of the first days I helped load pallet racks for three hours, pulling 10 pound to 30 pound boxes off pallets and handing them to someone else to put on shelves. I was very proud of myself.

I was useless the rest of the week. I definitely could not do an active job like that for more than 10 hours per week. Of course, I'm 53, and I haven't been able to exercise like a healthy person for three years now. Now that my feet are better and I'm responding to exercise better, that may change.


I still have the occassional attack of eye GVH, but I no longer need any medication to treat it. I started expressing oil from my eyelids, and that has eliminated all suffering from GVH of the eye.

Dry Eye Zone expresses concerns about my method. It has staved off GVH to the point that my eye doctor said my eyes are fine and that I don't need to see her anymore. Therefore, I am going to continue, but I can't recommend that to you, anyway. The warm compresses suggested on that site are surely a better idea, anyway.

Okay, thanks! This update was mostly to provide a comparison for others of you wondering if you're ever going to get better.


  1. Paul, my Paul and I were just talked about you last night and wondering what the latest was...and here it is! I have had a few set backs this summer, but all in all I have hung in there well. You have definitely walked a tougher road than I!! :/ My remission did not hold up. :( At two years, they found "minimal residual disease." My doctor went nuts and has been on high alert ever since. Things have calmed down a bit because for three months now it has remained steady...a very small 1% of abnormal cells. I also had to deal with a weird rash all summer, but it wasn't GVHD. It's something they like to refer to as "immunodisregulation". I told them that I think they made that up! :) It's better, but it still flares up a bit. Itchy! Oh, well. We just keep on moving on and tackle bigger battles! Blessings to you as we continue to take one day, one step, one prayer at a time. Tamara

  2. Great to hear from you, Tamara! Headed to your blog now.