Although it has diminished greatly, I remain in constant abdominal pain as I write this. I just ache. Every now and then, as my severed nerve endings begin to heal, I get eye-watering stabs along my incision line.
For now, most of the area surrounding my hip-to-hip incision is numb. People who've endured similar surgeries tell me full feeling may not come back for years. If ever.
My supply of the really, really incredible prescription painkiller, Percocet, is dwindling rapidly; I cherish every remaining pill like it could pay off the national debt.
My renal doctors in St. Louis have scheduled me for an ultrasound here in Champaign today to rule out the possibility of a blood clot in my new little kidney. Great. A few days later, my PD catheter, now a useless appendage hanging out of my side, will be removed in an outpatient procedure. More pain. More recovery.
My blood pressure, which had been kept artificially low at around 110/70 by medication prior to my Nov. 18 kidney transplant, is now soaring wildly out of control again, Today it was 165/90. The new cocktail of hypertension medicine I've been prescribed has yet to take effect.
Since it was high blood pressure that got me into this mess in the first place, I'm more than a bit frantic over it all. My current health care team doesn't seem to share my sense of dire urgency about the matter. The thought of surging blood relentlessly pounding my delicate, undefiled six-year-old kidney makes me angry and quite sad.
I'm taking more than 40 pills a day, or four times as many as I did on Peritoneal Dialysis (PD). I have become a pharmaceutical stockboy, constantly checking supplies on hand, making frequent restocking visits to my local pharmacy and calling St. Louis for transplant-specific drugs to be delivered by mail. The medications control my day. Half the drugs must be taken with food, the transplant drugs specifically on an empty stomach. I feel like the guy on that antacid commercial: "Eat now, pill now? Pill now, eat later? Wait to eat, pill now? Wait two hours, now eat?"
Until next March, my blood must be drawn every Monday to ensure certain levels are decreasing or maintaining on schedule. For as long as I have a transplant, my blood will be drawn for lab tests on a regular basis.
Did I mention that I can't stand needles?
I don't mean to sound whiny, and if I do, forgive me. I was told before the surgery that depression is frequently a natural post-op emotion, and I may be going through a touch of that right now. I know that ultimately, the pain will end, the medication regimen will become routine, my blood pressure will plunge. But I can't shake the feeling that in many ways, I was better off on dialysis. At least, I felt better. At the very least, I wasn't in pain all the time.
When I was on PD, I didn't worry about much. The daily routine just kind of rolled along, and I pretty much knew exactly what to expect. Now I find I'm constantly worrying about something – organ rejection, my lowered immune system and possible infection (my wife has a cold! Oh, NO!), taking my pills on time, the possibility of a blood clot.
On a conscious level, I know this is a transition period and if I remain patient, much of this will pass. But if having kidney failure has taught me anything, it's that you have to live in the now, that a healthy tomorrow isn't promised to any of us.
Well, I'm in the now. And now sucks.
Sunday, December 18, 2011
Friday, December 2, 2011
Fear Factor
A phone conversation the other night with my great good friend over many decades, Larry Kaplan, really served to clarify some issues and emotions for me regarding my recent kidney transplant – emotions I hadn't admitted to anyone, not even myself.
I have known Larry since the first week I set foot in Detroit to work back in 1979. I was the rock critic for The Detroit News then, and the paper's staff photographers deemed it beneath their dignity to shoot rock 'n' roll bands at night for concert reviews. So the entertainment department hired Larry as my full-time freelance sidekick, doing hand-to-hand combat in the photo pit to embellish my meager words with visual splendor. In recent years, he has reserved a bedroom in his spacious condo for me to use upon my frequent return visits to Detroit, sparing me untold amounts of stress, advance scheduling and hotel fees. (Thanks, Larry.)
We hadn't talked since a month or so before the surgery, and he was asking me the kind of simple, direct questions anyone might inquire of an old friend fresh from the scalpel. "Is there a lot of pain?" (Oh, YEAH!) "Will you have to take anti-rejection medication? (For the rest of my life.)"
"Do you feel any different inside?"
Yes, it suddenly occurred to me, I do.
I'm scared.
No, scratch that. Dude, I am terrified.
Beyond the pain of recovery, my body has changed in so many dramatic ways. I'm swallowing three times the medications I was taking while on dialysis – some with meals, some only on an empty stomach, some in the morning, others at bedtime – and until I establish a routine, the sheer scheduling of the doses every day has my head spinning. "You MUST take your medicine regularly!" my post-transplant handbook warns. "Rejection will occur if you skip or stop your immunosuppressive medicine."
No pressure.
But it's more than that. Way more. I have been given an awesome gift – one so precious that sometimes, when I stop to think about it, I am moved to tears. I know that last year alone, more than 4,700 people died while waiting for a matching donor kidney like the one I now have. I know that a family somewhere is experiencing heart-shattering grief for the donor whose organ is giving me a second chance at a full, healthy life.
I know a vast network of supporters I cannot begin to tally – the transplant team, surgeons and nurses at Barnes-Jewish Hospital, my church family at Harvest Bible Chapel Decatur, relatives, friends, relatives of friends, co-workers and clients past and present, total strangers – have been immersed in prayer and positive, affirming thoughts on my behalf. My friend Rochelle Riley, the fine columnist for the Detroit Free Press, summed it up in a Facebook posting this week after my first post-surgery outing: "Yay to Jim McFarlin who's outta the house!" she wrote. "We're all so excited 'round these parts!!!"
No pressure.
I just feel there is so much victory, so much fulfillment of hope wrapped up in all of this. I could not bear the anguish of having to say to these same people at some point in the future, "Folks, my 'dream kidney' is failing...and it's because of something I did."
My immune system is intentionally suppressed. By how much, I have no idea. But living with the idea that a careless cough in the face from a 3-year-old could set my entire personal ecosystem into screaming yellow meemies is going to transform me from Average Sloppy Guy to Anxious Germophobe. I can just feel it. I'm going to make Howie Mandel look like a mud wrestler. I won't be quite as bad as Larry, who used to squirt a person's hand with sanitizer before he would shake it, but I'll be pretty insufferable for a time. Please bear with me.
I'm going to start doing all those things we tell ourselves we need to do to improve quality of life. Make exercise an important part of my lifestyle. Watch what I eat, and eat better food. Balance and manage mind and body, work and leisure. Pray more.
I can do this, Larry, thanks for asking. I have to do it.
I just don't want to screw this up.
I have known Larry since the first week I set foot in Detroit to work back in 1979. I was the rock critic for The Detroit News then, and the paper's staff photographers deemed it beneath their dignity to shoot rock 'n' roll bands at night for concert reviews. So the entertainment department hired Larry as my full-time freelance sidekick, doing hand-to-hand combat in the photo pit to embellish my meager words with visual splendor. In recent years, he has reserved a bedroom in his spacious condo for me to use upon my frequent return visits to Detroit, sparing me untold amounts of stress, advance scheduling and hotel fees. (Thanks, Larry.)We hadn't talked since a month or so before the surgery, and he was asking me the kind of simple, direct questions anyone might inquire of an old friend fresh from the scalpel. "Is there a lot of pain?" (Oh, YEAH!) "Will you have to take anti-rejection medication? (For the rest of my life.)"
"Do you feel any different inside?"
Yes, it suddenly occurred to me, I do.
I'm scared.
No, scratch that. Dude, I am terrified.
Beyond the pain of recovery, my body has changed in so many dramatic ways. I'm swallowing three times the medications I was taking while on dialysis – some with meals, some only on an empty stomach, some in the morning, others at bedtime – and until I establish a routine, the sheer scheduling of the doses every day has my head spinning. "You MUST take your medicine regularly!" my post-transplant handbook warns. "Rejection will occur if you skip or stop your immunosuppressive medicine."
No pressure.
But it's more than that. Way more. I have been given an awesome gift – one so precious that sometimes, when I stop to think about it, I am moved to tears. I know that last year alone, more than 4,700 people died while waiting for a matching donor kidney like the one I now have. I know that a family somewhere is experiencing heart-shattering grief for the donor whose organ is giving me a second chance at a full, healthy life.
I know a vast network of supporters I cannot begin to tally – the transplant team, surgeons and nurses at Barnes-Jewish Hospital, my church family at Harvest Bible Chapel Decatur, relatives, friends, relatives of friends, co-workers and clients past and present, total strangers – have been immersed in prayer and positive, affirming thoughts on my behalf. My friend Rochelle Riley, the fine columnist for the Detroit Free Press, summed it up in a Facebook posting this week after my first post-surgery outing: "Yay to Jim McFarlin who's outta the house!" she wrote. "We're all so excited 'round these parts!!!"
No pressure.
I just feel there is so much victory, so much fulfillment of hope wrapped up in all of this. I could not bear the anguish of having to say to these same people at some point in the future, "Folks, my 'dream kidney' is failing...and it's because of something I did."
My immune system is intentionally suppressed. By how much, I have no idea. But living with the idea that a careless cough in the face from a 3-year-old could set my entire personal ecosystem into screaming yellow meemies is going to transform me from Average Sloppy Guy to Anxious Germophobe. I can just feel it. I'm going to make Howie Mandel look like a mud wrestler. I won't be quite as bad as Larry, who used to squirt a person's hand with sanitizer before he would shake it, but I'll be pretty insufferable for a time. Please bear with me.
I'm going to start doing all those things we tell ourselves we need to do to improve quality of life. Make exercise an important part of my lifestyle. Watch what I eat, and eat better food. Balance and manage mind and body, work and leisure. Pray more.
I can do this, Larry, thanks for asking. I have to do it.
I just don't want to screw this up.
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