GOOD NEWS!

Blood tests indicate my kidney function improved with a solid bump upwards in results.   Let’s hear a big ol’ hurrah, hooray, or huzzah!!!  (I’ll let you choose which word to shout according to your own personal preference or geographic background/influences.) 

How big of an improvement?   Well, let’s put it this way:

• Transplant: Lance at stage 5 renal failure
• Post transplant; Lance at Stage 3 renal failure
• Recent weeks: Lance at stage 4 renal failure 
• Now: Lance at stage 3 renal failure (on the moderately impaired end of the scale)

Potassium, magnesium, phosphorus, edema, and blood pressure measures are all improving.   My red blood cell count dropped, but they told me it could happen.  We’ll deal with that if it doesn’t improve; right now, I’ll gladly take the trade for improved kidney function. 

Moral of this story?  Change can be good.  It can be as good as a sunrise over a mountain meadow full of frolicking baby bunnies next to a stream of steaming hot coffee.  (Hey… this is my perfect morning.  You do your own thing if you don’t like it.  Also, to be clear—the bunnies have learned to avoid my personal beverage brook because one of them fell in and the rest watched on in horror as it screamed in the scalding liquid and went under, never to be seen again.   As a bonus,  since that time, I have had zero bunny hair in my coffee.) 

I’m looking forward to seeing how things unfold over the next 14 days.   Next week is another trip to the big comfy chair (see last journal entry if you don’t recognize that reference).  Then, the following week is a visit back to the transplant center for follow up testing and a face-to-face physical checkup.   

The testing I’ll be going through will be done less frequently but have more depth.   As I transition off Tacrolimus (tapering dosage down) and onto Belatacept (tapering dosage up), I’m more at risk of a rejection episode.   So, they’re going to be doing “AlloSure” testing.  What’s that?   Here’s an explanation and more nifty phrases for you to use to impress friends, neighbors, and your favorite Starbucks barista:

The AlloSure test is a clinical-grade, targeted, next generation sequencing (NGS) assay that measures single-nucleotide polymorphisms (SNPs) to accurately quantify donor-derived cell-free DNA (dd-cfDNA) in renal transplant recipients without separate genotyping of either the donor or the recipient.

In summary,  “AlloSure” is checking to make sure the allograft (transplanted kidney) is still welcome in the neighborhood. 

An illustrative outline of medication side effects

The important material has been covered above, so I want to fill the rest of this entry a description of how Mother Nature does NOT like to be poked at by modern medicine.   Evidently, she has all kinds of interesting responses to the drugs that affect your body chemistry and tamper with her natural defense systems.   To illustrate this, I’m sharing some of the information about Belatacept (my latest medication, and one of many that I’m putting into my body each day). 

If you go to the Mayo Clinic web site,  you’ll find there are 82 conditions that may pop up after you start Belatacept infusions that require you to "call a doctor immediately".  They range from the truly frightening (e.g., convulsions, stupor, and coma) to the mysteriously non-specific conditions that will have you looking closely at all your real or perceived imperfections (e.g., shiny bump, pink growth, reddish patch, and irritated area). 

Under the list of the 82 conditions which signal the Angel of Death has decided to roll up to your house in his pale gray 1959 Cadillac Coupe Deville, you’ll find a list of more common side effect which “may occur that usually do not need medical attention”.       I’ve added my own comments next to some of the entries [italics font in square brackets]. 

• abdominal or stomach cramps
• blemishes on the skin   [Like a ‘hello kitty’ tattoo suddenly appearing somewhere on my body?]
• body aches or pain
• collection of blood under the skin   [That’s a bruise. Just say bruise.]
• cough producing mucus   [Why is it never something useful, like a cough that produces gold coins?]
• deep, dark purple bruise   [Ha! They said it!]
• diarrhea
• difficulty having a bowel movement [Maybe I’ll get this  and the one above and they’ll cancel each other out?]
• difficulty with moving
• dry mouth
• ear congestion   [Say what? I can’t hear you.]
• flushed, dry skin
• fruit-like breath odor   [An improvement over my coffee breath.]
• hair loss or thinning of the hair  [I have a head start.]
• increased hunger
• increased sweating
• increased urination
• itching, pain, redness, or swelling   [Of WHAT???]
• loss of consciousness   [Yeah… if this happens, I feel like a call to a doctor is appropriate… maybe even a trip to the ol’ Emergency room.]
• loss of voice   [I hope this is intermittent - like it only happens when I'm asked tough questions in meetings at work. ]
• muscle cramps in the hands, arms, feet, legs, or face
• muscle or bone pain
• muscle pain or stiffness   [I guess we have to mention muscle pain twice, just to make sure nobody can say they didn’t know about it.]
• numbness and tingling around the mouth, fingertips, or feet
• pain in the joints   [So much pain in this list!]
• pimples   [Oh joy!]
• shakiness in the legs, arms, hands, or feet
• shortness of breath
• sleeplessness
• sneezing [This list is starting to sound like  a messed up version of  the Seven Dwarves:  "Sleepy", "Sneezy", "Grumpy", "Achy", "Itchy",  "Crampy", and "Slow Poke"]
• swelling or inflammation of the mouth
• tightness in the chest
• tremor
• trouble sleeping
• unexplained weight loss 
• unable to sleep   [Isn’t that the same as “sleeplessness”,  7 lines up on this list? Also, if you can’t sleep at all, don’t bad things happen… like you turn into the Zodiac Killer or Boxcar Willie???]

In short, this particular medication appears to ramp up the aging process.   You can expect aches/pains, wheezing, trouble sleeping, shakiness, problems in the bathroom, a general sense of reluctance to accept change, a propensity to fall for phone scams, and an intense fear/hatred of new technology.    All that considered, I’m 100% on board because it beats the alternative!  

That’s it for this week.   I’m going to break the weekly cycle and hold off on posting until around the 23rd of this month.  No offense, but I’m seriously hoping we can wind this journal down, wipe our hands off, high-five, and get on with our long, healthy lives.