Day # 475: infusion Day at U of M

As I looked back on my blog, I realized that it actually had been much longer since Ron had had this type of infusion. It is called IVIG and will give his immunity a boost. Because blood products have given him hives in the past, he has benadryl,Tylenol,and an infusion of hydrocortisone as pre-meds.

Overall, it was a good day. (of course, I wasn't the one who had to be poked three times to get the IV started.) The pre-meds make Ron drowsy, so he slept for quite awhile. He has the infusion in a hospital-like room because it takes nearly 6 hours for the entire process. His bloodwork is good. Although he is on blood thinner, his clotting-platelets count has improved greatly to nearly normal range. It would seem that part of the reason for his previously low platelets count was that instead of continuing to circulate, they formed the bloodclots over a long period of time. Maybe. Today they told us that Ron will continue with lovenox injections for 3-6 months. For BMT patients, this is preferred treatment over coumadin. Ron has gained 5 more pounds this month...25 pounds total since Labor Day weekend. His BP is normal 127/77 and heart rate down to high 60s.

There has been some relief from symptoms this month. Ron's mouth has basically healed finally---can't even imagine having mouth sores for a year. He also has regained some of the feeling in his feet. This will help with his balance and walking. He sees his neurologist in January; one thing he will do is re-evaluate the peripheral neuropathy.

Today's bloodtests did show elevations in liver enzymes which can mean some cGVHD going on in his liver. Also, his skin has some red splotchiness; probably some chronic graft versus host disease going on there too, but it is minimal as his body continues to adjust to this month's decrease in prednisone. Today's pre-meds should help that, and his steroids will remain at the same dosage. There were no new med changes except to use less steroid mouth rinse.

When I looked back in the blog to October 2011 when Ron had an IVIG infusion, I couldn't help but feel grateful that I didn't know what "the long haul" meant when Dr. Mag told us that. It was also upsetting to relive what Ron was experiencing during the last 3 months of the year...and we still had no idea that we would stay in Ann Arbor until the end of May because of more complications during the first months of 2012. But not to dwell on that, but to be so very thankful that we are in a good place now. I am rambling tonight...just so thankful that there was nothing new to catch us off guard today and revved with anticipation of more return to normalcy in 2013. We have paid our dues this year.
Love to all and wishes for a joyous holiday season,
Ron & Jan