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I got a call on my Prograf/FK-506 level, and it’s too low; 5.1 (the goal at this point is a level between 8-10). That sure would explain the drop in creatinine from 1.4 to the current 1.2 (I was told that my creatinine will probably drop some when they ease up on my immunosuppressants over the next few months).
Interestingly, the Transplant Nurse was talking about how some patients cheat on their immunosuppressant meds. They don’t take them for a while, and then take them 2 days before their labs, and everything looks good, until they end up rejecting. When he called me with my labs, I assured him that I am FANATICAL about taking my meds. They do have a way to detect the cheaters, though. They periodically check an “immune function”; if it’s abnormal (too high?), they know the person is non-compliant.
In my opinion, being non-compliant is in a way unfair to others. If a non-compliant person gets a kidney, and loses it, then someone who would have taken better care of it loses out. I firmly believe that recipients have a DUTY to take care of their transplant as well as they can.
As for the other 2 labs; the CMV level and BK Virus screening, I probably won’t know anything about them until next week.
Kevin and I just got back from my bi-weekly appointments with the Transplant Surgeon and Transplant Nephrologist.
I started out having labs drawn, we then went to breakfast, and then up to see the nurse and doctors. Everything is going GREAT. My creatinine is 1.2, and my kidney function is above 60%! (they don't quantify above that; anything over 60% is considered normal) I looked back at my labs, and was able to track my creatinine back to April 2000; at that point, it was 1.6. They didn't start reporting GFR until 2004, and in March of that year, it was 29.2. This was the first BMP (basic metabolic panel) since the mid-late 1990's that ALL values were normal. Dr. Varma, the Transplant Surgeon, had a huge smile, and said that I couldn't have asked for a better kidney. My Prograf level (FK-506), CMV level (to determine if I have the virus active in my body), and BK Virus screening were not back yet.
Other highlights: I don't have to return for another 2 weeks (I was told initially I would have appointments WEEKLY for 3 months), I am cleared to drive (WHOPPEE!), and I can return to work sooner than planned (tentatively set for July 7).
The Transplant Nephrologist was also pleased with my progress. I asked about still taking Vitamin D, and he said it was OK, and that he will check a Vitamin D level and PTH in several months. Also, he will recheck my iron studies to see if I need another IV dose of Venofer.
The Transplant Nurse explained my immunosuppression regime in a little more detail. I follow a kidney transplant group online, and many of the patients report a dose of CellCept of 1000 mg twice daily; mine is 500 mg twice daily. The reason for the lower dose is because they hit me with Campath prior to surgery, which basically wiped out my T cells, and decreases the need for more heavy immunosuppression. I guess it's a case of a synergistic effect. Using smaller doses of more meds is better than larger doses of less meds.
As things are pretty much stable, I probably won't blog every day, at least about my transplant. However, I will update my "Vital Signs..." page daily.
I've come upon some useful browser add-ons, as well as other software. First, there's "Slimbrowser": It incorporates a large collection of wonderful features like recoverable popup killer, form filler, site group, quick-search, auto login, hidden sites, built-in commands and scripting, online translation, script error suppression, blacklist/whitelist filtering. In plain English, it's a lean, mean alternative to Internet Explorer, and more secure.
There are several add-ons to it as well. First, there's Roboform, which incorporates into ALL of your web browsers, and fills in passwords and forms. It's safe, because you have to log on with a master password to use it. Another worthwhile add-on is Blaze-FTP, which is a free FTP client.
Another add-on that I now use is BlogRovR. It is an online website/application that allows you to centralize the blogs that you read on a regular basis. Unfortunately, it's only available for Firefox.
Cross-posted on WordPress.
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.
Cross posted at WordPress.
