Tuesday
Morning: Half way over to S. Austin Hospital for Express Lab, I remember that I could've driven myself and foolishly mention it to my sleepy chauffeur and she rolls her eyes and wishes we'd remembered that 15 minutes ago...
Things went smoothly and quickly again at the Lab and we were outa there and back home by 7:40 am!
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April 15, 2009
Wednesday:
Morning: Today was too busy for me! In the morning, after taking my morning meds and documenting everything in my manual (which I now can do in just 15 minutes!), Orlando came over to go with me to pick up two tables from Thomas to give to Kim for some art booth at Earth Day on Saturday... put them in my garage and then at 10 meet here with a supervisee, and then one conference call and one conference training (which I must have miss timed since I never found it.
Clinic Appointment: Since I can drive again (yahoo!) Liz and I met up at the Transplant Clinic at NAMC for clinic. Bernadette quickly did the initial screening, weighing, etc. without BP and temp, and got me into a treatment room. Dr. Lewis came in fairly quickly and quipped something like, "Well, that is one kick-ass kidney!" He went on to point out some details from my last labs:
Creatinine is 1.1 (excellent);
Potassium (excellent); Phosphorous (good);
LDL Colesterol (a little high @ 229: norm is <200);
Triglycerides (off the chart! 502 and the norm is <180)... Doc L is adding Crestor (a statin) in a low dosage to my list of meds to be taken at night to lower the cholesterol & triglycerides... and, this has a chance of interacting with the anti-rejection meds, so I should watch for any muscle pain and call if I get some.
My Calcium is still a bit high (71.7) and due to my parathyroid having a mind of it's own... called "over-active parathyroid". To treat the high Calcium he is re-adding some Sensipar back to my med menu (@ 30 mg... which allows us to use our nifty new pill cutter cause we only have 60's). He is adding this for a short time to see if makes a difference... and, he mentioned that "we could go in and snip out" some of the glands in the parathyroid. "Oh boy!" me thinks! (see Post #10, 5/12/06*).
He continues that he talked to a Lung Specialist (I like the fact that Lewis calls experts when he needs specialized information) and they recommended that I not use the Pentamidine (in review, I guess I didn't document that terrible treatment that reminded my of the severe asthma I had as a child... and took an hour or so to get over) that gave me the asthma-like attack in the hospital. Instead he is going to add a pill for me two times a week (Monday and Thursday) at night for only 3 months (Dapsone).
After this report, Dr Lewis checks my healing incision, saying it looks great, listens to
my chest and heart with no real comment, and while on the table I ask him about my painful scrotum and rash so he checks that out too. In my scrotum he says I have some testicular hydrocele** which I can put up with, or if, over time, it keeps bothering me, or if I find it to be unattractive, we can do a little surgery (These surgeons!) to drain it. I tell him that I have been using Caldesene and that works much better than the Hydrocortisone that Bernadette recommended. He says that the rash is a fungus amongus and he adds Tinactin spray to my list of meds. It's like athlete's foot of the crotch...ewww***In answer to my/our listed questions, Dr Lewis responded:
- Wearing 34" Levi's again --> "Don't try it for a month or so more. You may have to get used to having a bigger waist, like all the rest of us."
- Type of diabetes testing meter: prescription for more lancettes --> "No. You don't need that... we are watching your gluclose and it is fine."
- Raw scrotum (see above)
- Short term memory --> I reported on my 30 second to several hour memory loss and several anecdotes of this, as well as nurses reports of having confusion and memory problems for months after surgery, as well as Liz's story of her friend with the hip replacement having memory problems even now, four months out of her surgers. --> "That is not my experience (shaking his head back and forth)... that is 'outside two standards of deviation from the mean (95%)'!" (thats the 5% in the tails of the curve) He goes on to question my pre-surgery
memory problems, which I call ADD, although, in answer to his questions, I have never been diagnosed as ADD profes- sionally. When I was in school it was called "lazy", "daydreaming", and "not paying attention". As the ADHD and ADD diagnoses got developed I was working with youth and had plenty of opportunities to "self diagnose" myself. His response: "You have a lot on your plate right now and I recommend you do what you have always done to manage this. It is NOT normal, and in all the ways I look at patients, you seem to be doing excellently from my point of view. If is still problematic when you get 6 months to a year into this, then we should look at referrals for neurological evals."
I concluded after he left that on the meds review: the score is + 4, - 0, which doesn't seem too cool. But even more bothering... my memory is not about the Transplant! Something else to WORRY about... and boy, I will probably go nuts about this one; unless I am lucky enough to forget it as soon as we walk out into the sunlight... I hope! I know I will now redo my efforts and thinking without FUZZ... so it goes. "its always something"! as Roseanne Roseannadanna used to say!
Notes:
*Introduction to Parathyroid Glands, online at Parathyroid.com, http://www.parathyroid.com/parathyroid.htm
**Hydrocele Testes, online at Wikipedia, http://en.wikipedia.org/wiki/Hydrocele_testis
***From Lemonick, M.D, (May, 2007) Why we get disgusted. TIME Magazine, available online at http://www.time.com/time/magazine/article/0,9171,1625167,00.html
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