Transplant Week 12

Yes, it’s been 12 weeks since my kidney transplant, and things are going rather smoothly.

I did find out my Prograf level (FK-506), and it is going up. This week, it’s 10.6, but the nurse said that she would call if there were any changes, so I assume I’m to stay on the same dose.

I got a call from the nurse at VITALine today. This is the agency which will be dispensing and managing my Procrit. Initially, she said that they weren’t going to seek an authorization from the insurance company, because my kidney function is above 60% (when my lab measures kidney function, aka “GFR”, they only quantify anything below 60%; if it’s higher, they list it as >60). In other words, “we don’t think you qualify and/or need it”. But she contacted the Nephrologist that is involved in managing the program (who also happens to be my sister’s Nephrologist), and he told her that I need it. Let’s see; my hemoglobin has not gone above 10 since my transplant, and it’s NEVER been this low in my entire life. And they weren’t going to apply for an authorization? Anyway, I’m chronically anemic since my transplant, and a little boost with a few weeks of Procrit will most likely give me the bump I need to get closer to a normal hemoglobin.

I’ll find out Monday if it is approved. I’m assuming it is, because I had a message from the insurance company pharmacy on my answering machine to call on Monday. If approved, it will be delivered on Tuesday to where I work. I’ll start out on 10,000 units a week, and dose adjustments will be based on my labs. I’m not sure how much it will cost me, but previously, I got a 2 week supply for a $20 copay, so that’s not too bad.

I have been going for a walk on a consistent basis at work. I use my lunch hour, and take a 20-25 minute walk around campus. I pick a hilly route, so that I do get my heart rate up (although the fast heart rate can also be due to the low hemoglobin). I feel better, and with sitting all day at work, it helps to get the exercise mid-day. I hope to increase my speed over the weeks, so that I cover more ground in the same amount of time.

On Tuesday, my blog reached 5000 hits since I started it in April.

Jackie goes for a pedicure on a regular basis (not sure, but I think it’s once a month). Since gas prices are so high, I found a cheaper alternative, and I’ll be going out tomorrow to buy the necessary supplies. 🙂

Prograf Level

My Prograf (FK-506) level is low once again, and I’m not sure why.

2 weeks ago, it was 5.1, so my dose was increased by 1 mg a day to 3mg and 3 mg (12 hours apart).  Last week, my level was 7.1, so they kept my dose the same. This week, it dropped again to 5.1 (so my dose is increased to 3 mg and 4 mg). The only difference is that when it was 5.1 both times, I had it drawn at the hospital, and it was run that day. Last week, when it was 7.1, it wasn’t run until the day after, because it was drawn at a “satellite” clinic, and wasn’t delivered to the hospital in time for it to be run that same day.

I doubt whether that would affect it, but maybe it would. Other than that, I can’t come up with any thing that would affect it; I didn’t miss any doses, I haven’t changed any of my other meds, etc.

 

Transplant Day 48, Labs

I’m doing well this week. It’s killing me that it’s so nice outside, yet I can’t do any yard work (due to mold spores in the soil).  Yesterday, though, I did trim some branches from the tree in our front yard with Kevin’s help.

I got my labs back late yesterday, but I didn’t post until I heard back from the nurse today regarding my Prograf (FK-506) level.  My labs continue to be stable. My Prograf is up to 7.1 (from 5.1 last week; I increased my dose by 1 mg daily). I thought they wanted it up to 8-10, but they are OK with the 7.1. My creatinine is still down to 1.2 (awesome!), my glucose was low at 63, but I hadn’t eaten prior to my labs, and my calcium is up to 9 (I’m now taking Citrical). Speaking of which, my GI/Bariatric doc advises Calcium Citrate over Calcium Carbonate, as it’s more easily absorbed. WonderLabs has decent pricing on Calcium Citrate in various doses and combinations with other vitamins/minerals.

As for my blood count, it’s stable. My white count is still predictably low, my hemoglobin and hematocrit are the same. I’m amazed that with a hemoglobin of 9.5 that I’m not tired. That says a lot for how tired I was from the kidney failure.

When I messaged the nurse yesterday to get my labs, I also asked about my PPD. That’s a shot they do to screen for Tuberculosis. I get one yearly for both my full-time and weekend nursing jobs. The weekend employer is particularly adamant about having this done on time (and rightfully so). Anyway, I wanted to know if I could get a PPD, or if they could use the x-ray done after my IV line was placed in my neck prior to surgery.

The response from the nurse?  “I will check with the docs and get back to you. We do not have many patients as anal as you! ”   I’ll take that as a compliment!

I’ve had several interesting search engine queries that lead to my blog; looks like it’s soon time for another Searches That Pointed To My Blog  post.

For those that want to email me, here is my address (it’s a graphic rather than text so that I can avoid bots snagging my address):

Labs from June 11

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.

Transplant Day 39

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.