CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

Not much new as far as the transplant; everything is status quo (which is good).  Vitals are all stable, and I managed to get more fluid in yesterday. My urine hasn’t caught up yet, as I think I might be on the dry side; it’s a darker amber color, so I need to take in even more today.

I slept well last night, and no more GI issues from the CellCept.  I had weekly lab work today at the local Geisinger clinic, but the results won’t be back until tomorrow.  Next week, I have a screening for BK virus, which I’ll explain further below.

I received material from Roche Pharmaceuticals, manufacturer of CellCept. They put together an excellent booklet titled “New Beginnings Wellness Guide”. There are easy to understand explanations on many aspects of transplant. One of the pages discusses “Getting To Know Germs”. Sounds boring, but with a suppressed immune system, it’s important. The 2 main virus groups that are a concern are the Herpes Family of Viruses and the Polyoma Family.

Herpes isn’t just an STD (Herpes Type 2). There are 8 different herpes viruses that infect humans, including those that cause chicken pox, mono ( caused by Cyto Megalo Virus and Epstein Barr Virus), shingles (the same that causes chicken pox), and cold sores (Type 1).  Infection/reinfection with these viruses can cause serious problems when immunosuppressed, including rejection, cancer (Lymphoma), or major complications with various organ systems. In my case, my donor was CMV + and I was CMV -. I currently take Valcyte to prevent CMV. My dose is higher (900 mg daily) due to me being CMV -. 

As for the Polyoma family, the BK virus is the one of concern.  By the age of 12, 90% of all Americans have been infected with BK. For someone with a healthy immune system, it’s not a concern. But when the immune system is suppressed, it can cause kidney damage/failure. The treatment is to change around the immunosuppressant meds and lower the level of immune suppression to the point that the transplant will not reject, and the immune system is able to fight off BK.  

I’m up and running on my other blog now at MyKidney.com.  This is a site that eventually will include multiple bloggers at various stages of CKD (Chronic Kidney Disease); I’m blogging as a new transplantee. As of now, there is me, Krissi (who runs the site, and had a transplant from her brother last year), and Elizabeth, who is currently on hemodialysis and awaiting a blue sequined kidney . I have done 2 posts so far, and the second post is on an interesting subject. The LA Times reported on 4 Japanese gangsters getting liver transplants at UCLA, which meant that AMERICANS awaiting livers were passed by at least 4 times. Check it out here.