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Posts Tagged ‘MyKidney Blog’

Transplant Week 21, Other Stuff

October 1, 2008 Leave a comment

The farther out I get from my Kidney Transplant, the less I have to write about (as I’ve said before, I’ll take  boring).

I had labs done last week, and my Creatinine is rock stable at 1.2, my Hemoglobin has leveled out at 11.3 for the past month and a half (still on Procrit), and my Prograf level took a fairly large jump.

I doubled my Valcyte the week before, and my WBC dropped noticeably from 5.2 to 3.9. I predict that I’ll get Neutropenic again, and have to go to once a day Valcyte. As for the Prograf, I took my dose late the night before (I had a “dumping” episode from eating a small amount of ice cream), so it’s possible that I took it later than I thought, and thus drew my labs an hour early.

Appointment next week with the Transplant Surgeon, but not with the Nephrologist.  I’ll also have labs as well.

I just put up a new entry at my blog at MyKidney.  It involves the story of a 21 year old (Sam Pifer) who signed an organ donor card, died of a head injury, and had his organs harvested against his parents’ wishes.

Jackie and I went to Bethlehem this past Saturday to a Celtic Music Festival.  We mainly went to see The Elders, and again, we weren’t disappointed. Many in the crowd weren’t disappointed, and I’m sure they picked up a lot of new fans. (you can hear samples of their albums here). We also caught part of the previous band, The Town Pants. I probably will download an album or 2 of theirs off of iTunes; their fiddle player was awesome.

Confused about the “Bailout”? My personal opinion is that the plan is just another BOHICA from those we elected to represent us.  Giving 700,000,000,000 to 1,000,000,000,000 to the Treasury Secretary to “fix” the problem that was caused by greedy politicians and executives at Fannie Mae and Freddie Mac is akin to letting the fox guard the henhouse, not to mention all of the pork that will be piled on top of this money.  Jeffrey Miron, a lecturer on economics at Harvard has an excellent commentary on the bailout. Worth reading.

Speaking of the Bailout, I decided to contact my 2 Senators who will be voting on the Senate bailout plan this evening. I first phoned Bob Casey’s office, and the phone was answered on the first ring. I gave my opinion, she asked my zip code, and was ready to hang up. But I asked her if she was going to take my name; replied that she wasn’t. When I asked why, she told me it was because “we are getting too many calls”. I hung up; so much for my Senator caring about his constituents’ opinions. I tried numerous times to contact Arlen Spector’s office, and got either a busy signal, or a “circuits busy” message.  Pennsylvania had a movement called PA Clean Sweep after the thiefs Assemblymen in the Pennsylvania General Assembly tried to vote themselves a raise in a session held in the middle of the night. I personally hope that such a movement takes hold nationally.

Transplant Day 32, New Blog

June 4, 2008 2 comments

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.