A sleep note: At this moment, it's 7:30 on Thursday morning and I'm about to write about what happened on Wednesday. In yesterday's blog post, I wrote about how little sleep I'm getting, largely because of frequent nocturnal visits to the bathroom. Well, I went to bed at 8:45 Wednesday night and, instead of the four hours of sleep I've been getting lately, I logged 7.5 hours of sleep. I was awake for 1.5 hours because of bathroom visits, BUT those visits came at 90 minute intervals. I had been getting up as often as two or three times an hour and to have these 90 minute stretches of sleep was a boon -- and, as an added bonus, I had entertaining and fun dreams all night long!
1. Debbie and I hit the freeway soon after 6 a.m. and rumbled to the Outpatient Health Center at Providence Sacred Heart Medical Center in Spokane so that I could have blood drawn and meet with three members of the transplant team.
My first meeting was with nephrologist Dr. Murad who immediately jumped on his computer and went over the results of the blood work I'd just had done.
My creatinine levels continue to trend downward, just what we want, and, in fact, they've come down far enough that I can now take Valcyte seven days a week instead of the three days I had been taking it. Valcyte is used to prevent disease caused by a virus calledcytomegalovirus (CMV) in organ transplant recipients. It's a virus that can lie dormant in a person's system and then reactivate. When dormant, it hides. My donor had CMV in his system and I'm taking this medication in case the virus had hidden itself in the kidney of his that I received.
Dr. Murad wants me to work on elevating my magnesium levels in my blood. He talked with me about foods like beans, almonds, dark chocolate, low fat dairy products, spinach, and others that are rich in magnesium. He also started me on a magnesium supplement regimen.
As he had when I saw him in April, Dr. Murad instructed me to be sure to protect my skin from the sun by wearing sunscreen and with my clothing. The immune suppressing drugs I will take for the rest of my life leave me vulnerable to skin cancer caused by sunlight and I have to be vigilant about protecting myself.
Since being admitted for surgery on May 11th, my consultations have been with three transplant nephrologists: Dr. Poudyal, Dr. Khan, and Dr. Murad.
I love talking with them.
Each of them is witty, solicitous, eager to explain things, warm, and positive. They are patient answering my questions and precise in their knowledge. When I come into the clinic, I am not aware in advance which doctor will go over things with me, but I'm stoked to say that I am equally happy with each of these nephrologists.
2. I'm also very happy with the two pharmacists who are working on my case. Until today, Debbie and I worked with Gina. Today, Stephanie helped us out.
One of Gina and Stephanie's primary responsibilities is to make sure Debbie and I understand the medications I'm taking, the dosage, and when to take what.
Key to this effort is the filling of the pill box.
Until today, Debbie was responsible for my pill box, but I assumed that responsibility this morning.
Stephanie sat with me this morning, and watched as went from one pill bottle to the next and put the right amount of pills in the right place in the box.
I did it!
So, now, not only will I fill the pill box myself, monitoring the inevitable changes that will occur in the future, I, along with Debbie, have passed the pill box tutorial and Stephanie and Gina now trust us to fill the box correctly at home without their oversight.
Stephanie also went over handouts with me detailing what pain relievers I should never use, emphasizing that the only safe one is Tylenol, straight Tylenol. We also went over a list of over the counter medications and I learned which ones I can use and which ones interact badly with the medications I'm taking and must never be used.
3. Our visit ended with a visit from Nurse Jenn, a spirited, positive, buoyant, knowledgable pro. Jenn reminded me that she'd be calling me this afternoon about the one blood result still to come in and whether that result signified a need to change the dosage of one of my meds.
I asked Jenn how long I would be restricted to lifting no more than five pounds. It'll be about another three weeks and now I know why. When the surgeon made the incision in my lower belly, in order to open a space for the new kidney, he had to cut through the abdominal wall. It takes a few weeks for that abdominal wall to heal and if I overdo it by lifting too much weight, I risk incurring a hernia.
I also was curious when the stent that goes from my new kidney to my bladder would be removed. Once it's out, I can drive a car again. It'll be mid-June. Nurse Jenn is waiting to hear back from the urologist's scheduler, but I didn't need a precise date. I was just wondering, within myself, when I would no longer have to rely on others to transport me.
I return to Spokane on Friday, May 24th for another blood draw.
Then, on Wednesday, May 29th, I return again for labs first thing in the morning and then a round of meetings at the transplant clinic with team members again.
I wish I didn't have to rely on others to drive me to these appointments, making me especially grateful today that Debbie transported me and accompanied me during the visits with transplant team members.
On the way home, Debbie stopped at Pilgrim's Market in CdA and brought back a bag of good stuff including dark chocolate, kefir, cashews, almonds, a couple of beers (not for me!), trail mix, oat bread, and other great items.
Upon returning home, we both collapsed in our respective rooms and took long, deep, refreshing naps.
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