Hey, healing and recovering have been a time consuming task.
Mark looks and feels years younger. His eyes are bright, his appetite is amazing, and his mood is terrific. Sorta sounds like I'm describing an Irish Setter trying a new dog food, huh?
We are 2.5 weeks out of surgery. Things are moving along exactly as planned.
I, however, am trying to eek out more strength and stamina. It's been a mighty rough year here, and I must admit that I'm not at my peak right now. It seems the more Mark gets his strength back, the more I can finally let go of some of the stress and emotion. I wouldn't have dared to cry or be weak while we were in the middle of the health concerns. Lord knows, once you let it rip, it's hard to stop. I really didn't have the time to feel sorry for any of us, frankly.
Mark's incision is nearly closed. I haven't counted the staples, but I'd wager a guess at 25 stainless steel staples holding it together. Since wounds typically heal from the inside out, I think it's coming along nicely. One of the medicines Mark takes to fight of rejection also has the side effect off slowing the healing process. Regardless, he's knitting together.
Things around here have returned to a more manageable routine as the kids are back in school, faith formation classes, and music lessons this week. Kids need routines. It keeps their anxiety down. Once daddy returns to work, the kids will feel all is well. But they are doing well anyway. They are smart boys and are generally very open with us about this whole process from kidney failure to dialysis to transplant. In the duration, I hope they're learning good things from us.
Anyway, that's a quick update. I'll note any news here when we get it.
Everyone's prayers, and letters, and Christmas cards meant the world to us. I know they give Mark strength and a sense of peace. It's always good to know people are thinking about you.
XOXO
Thursday, January 8, 2009
Tuesday, December 30, 2008
How's Shark? How's Monica Holding Up?
Shark is doing well. Surprisingly well. Only once did he forget himself and lift something too heavy. That heavy thing was Luke. You tell me, who can resist picking up a bundle of cuteness like Luke? 
I can see how Shark simply forgot that he's forbidden to lift anything more than 10lbs.
Myself, I got out of the house tonight and allowed my husband's dear mother to come and take care of her son. For months I had been denied the chance to go out with my "mommy friends" simply because I was so needed around here. Between early morning dialysis treatments and the rest of the day catching up, I barely had time to bathe let alone time to take care of myself. Well, everyone in the family insisted I got out of the house.
And surprise of surprises, the house still stood when I returned. It was nice going out to dinner with the girls. We enjoyed the superb eats at the Cap City Diner. And lucky Mark gets a whole serving of the carrot cake in a doggie bag.
The girls arranged some dinners for our family for the remainder of the week. My fridge and freezer is stocked with homemade dishes ready to heat up. I am entirely filled with gratitude
I can see how Shark simply forgot that he's forbidden to lift anything more than 10lbs.
Myself, I got out of the house tonight and allowed my husband's dear mother to come and take care of her son. For months I had been denied the chance to go out with my "mommy friends" simply because I was so needed around here. Between early morning dialysis treatments and the rest of the day catching up, I barely had time to bathe let alone time to take care of myself. Well, everyone in the family insisted I got out of the house.
And surprise of surprises, the house still stood when I returned. It was nice going out to dinner with the girls. We enjoyed the superb eats at the Cap City Diner. And lucky Mark gets a whole serving of the carrot cake in a doggie bag.
The girls arranged some dinners for our family for the remainder of the week. My fridge and freezer is stocked with homemade dishes ready to heat up. I am entirely filled with gratitude
Monday, December 29, 2008
Not All Rest and Relaxation.
It's hard work to recover from surgery. Especially for kidney x-plant. No sooner you get released from the hospital, you have to begin your semi-weekly blood drawings.
After a sketchy night of rest, what with dressing changes and bathroom visits, we got up and readied ourselves for a ride up to the Transplant Clinic. Timing is of the essence. Two hours after taking his anti-rejection meds, a blood level needs to be taken. For the first few weeks to months we keep this up until an optimized dosage is reached. That dose can be lower or higher than what is currently prescribed. You need just enough to keep the immune system dampened, but not so much as to suffer from drug side-effects.
Later this afternoon, I negotiated the pick-up of several prescriptions. Very fortunately, we reached our medical deductible early on in 2008. The Pangloss in me says that even though 2008 really bit the big kielbasa, it had the best of all possible circumstances to undergo major surgery and hospitalization. Good insurance is something, ya know.
Mark is doing as is expected. His appetite is wonderful. In fact, a good hot meal makes him a very very happy guy who momentarily forgets his aches and pains. Healing requires calories and rest. And a bit of movement.
He also must record his temperatures, BPs, and weight daily. OSU has a website called TransChart for patients to enter information and learn their lab results. Pretty handy. Of course, we are all up into the TransChart.
I'm hoping tonight will be a more restful night.
After a sketchy night of rest, what with dressing changes and bathroom visits, we got up and readied ourselves for a ride up to the Transplant Clinic. Timing is of the essence. Two hours after taking his anti-rejection meds, a blood level needs to be taken. For the first few weeks to months we keep this up until an optimized dosage is reached. That dose can be lower or higher than what is currently prescribed. You need just enough to keep the immune system dampened, but not so much as to suffer from drug side-effects.
Later this afternoon, I negotiated the pick-up of several prescriptions. Very fortunately, we reached our medical deductible early on in 2008. The Pangloss in me says that even though 2008 really bit the big kielbasa, it had the best of all possible circumstances to undergo major surgery and hospitalization. Good insurance is something, ya know.
Mark is doing as is expected. His appetite is wonderful. In fact, a good hot meal makes him a very very happy guy who momentarily forgets his aches and pains. Healing requires calories and rest. And a bit of movement.
He also must record his temperatures, BPs, and weight daily. OSU has a website called TransChart for patients to enter information and learn their lab results. Pretty handy. Of course, we are all up into the TransChart.
I'm hoping tonight will be a more restful night.
Sunday, December 28, 2008
Setting up the Sofa-bed
The surgeons okayed Mark to go home today. They have to take care of a few things before he leaves. He needs to have one last infusion of Anti-thymocyte globulin. Then they finally can remove his dialysis port (perma-cath). They had been using it to give him his anti-rejection solutions.
I'll set up the sofa-bed in the front living room (ya know, the room in your house that nobody uses, but you insist on putting furniture in). I'm gonna drag up the good mattress for him and there he'll sleep. No stairs for Mark for the next week or so.
The kids are jazzed to see him. They weren't allowed to visit him on 9E Rhodes because nearly everyone there is immunocompromised.
The kidney continues to work very well. When he went into the hospital his creatinine was over 8, and as of yesterday morning was down to 3.5.
The x-axis is serum creatinine, the y-axis is %kidney function.
I'll set up the sofa-bed in the front living room (ya know, the room in your house that nobody uses, but you insist on putting furniture in). I'm gonna drag up the good mattress for him and there he'll sleep. No stairs for Mark for the next week or so.
The kids are jazzed to see him. They weren't allowed to visit him on 9E Rhodes because nearly everyone there is immunocompromised.
The kidney continues to work very well. When he went into the hospital his creatinine was over 8, and as of yesterday morning was down to 3.5.
The x-axis is serum creatinine, the y-axis is %kidney function.
Friday, December 26, 2008
No Exaggeration
Today was something to behold. I have not seen Mark in such good spirits in years. He looks 5 years younger than he did in the beginning of December. He's smiled more today than in the previous year altogether.
What's it mean when your worst discomfort is the damned Foley? It means that a new kidney makes someone who's suffering from end stage renal disease feel brand new; that's what it means. Sure, they're nuking his immune system with about three different therapies and infusing insane amounts of prednisone into his system, however just having a working kidney makes him feel very alive and well. And he's very happy.
I spent about six hours just hanging out with him today. We walked the floor a few times and had supper together. And we just sat and marvelled about the fact that a bit of Mr. Darling is sitting inside of Mark's abdomen. Would we have ever even imagined something like this a year ago? I can hardly believe it's real and I've seen their incisions!
Again, my heart goes out to Shark. What a generous and great buddy. I always used to say he'd give you the shirt off his back. I guess I gotta amend that.
Shark and me (Spring 1992)
What's it mean when your worst discomfort is the damned Foley? It means that a new kidney makes someone who's suffering from end stage renal disease feel brand new; that's what it means. Sure, they're nuking his immune system with about three different therapies and infusing insane amounts of prednisone into his system, however just having a working kidney makes him feel very alive and well. And he's very happy.
I spent about six hours just hanging out with him today. We walked the floor a few times and had supper together. And we just sat and marvelled about the fact that a bit of Mr. Darling is sitting inside of Mark's abdomen. Would we have ever even imagined something like this a year ago? I can hardly believe it's real and I've seen their incisions!
Again, my heart goes out to Shark. What a generous and great buddy. I always used to say he'd give you the shirt off his back. I guess I gotta amend that.
Shark and me (Spring 1992)
Shark has been sprung from the joint!
He probably arrived at my mother-in-law's moments ago. He passed muster and they gave him his freedom.
The trick now is to make sure my youngest kid, Luke, doesn't go back to his old ways of climbing all over the hulking Shark figure. I gave the boys the "Please be nice to Shark, he's not allowed to lift anything over 10lbs and doesn't need you jumping on him right now" speech.
I'll be going up to the hospital some time this afternoon. Perhaps I'll go after a short nap.
The trick now is to make sure my youngest kid, Luke, doesn't go back to his old ways of climbing all over the hulking Shark figure. I gave the boys the "Please be nice to Shark, he's not allowed to lift anything over 10lbs and doesn't need you jumping on him right now" speech.
I'll be going up to the hospital some time this afternoon. Perhaps I'll go after a short nap.
Thursday, December 25, 2008
Hi Ya
Mark and I just got back from a lap around the 9th floor.
Mark says, "Merry Christmas".
Shark is doing sooooooo much better today. Both guys are eating real food and moving about on their own. Pretty nifty, if you ask me.
Our wonderful neighbor brought us a rich and delicious baked pain perdu for brunch. And tonight for Christmas dinner she's bringing us a Chicken Florentine Lasagna.
The house felt a bit lonely without Mark last night, but today it's filled with happiness and gratitude.
Everybody's love and concern has been almost tangible. And for that, we are really blessed with a Christmas to remember.
Amen.
Mark says, "Merry Christmas".
Shark is doing sooooooo much better today. Both guys are eating real food and moving about on their own. Pretty nifty, if you ask me.
Our wonderful neighbor brought us a rich and delicious baked pain perdu for brunch. And tonight for Christmas dinner she's bringing us a Chicken Florentine Lasagna.
The house felt a bit lonely without Mark last night, but today it's filled with happiness and gratitude.
Everybody's love and concern has been almost tangible. And for that, we are really blessed with a Christmas to remember.
Amen.
The Best Christmas Greeting I Ever Got!
Mark called me first thing this morning to tell me Merry Christmas! How great is that? He sounds so normal. He says that his discomfort level is such that he can probably take just Tylenol. Amazing. He's had enough of the opioids because they cause him hallucinations and panic attacks. Imagined wooden tiki figures and auditory hallucinations be damned!!!
ai ai ai ai ai ai ai ai
I just think he's having bad 70's horror film flashbacks.
I'll call over to see how Shark is doing shortly.
Merry Christmas to all. Updates later, of course.
ai ai ai ai ai ai ai ai
I just think he's having bad 70's horror film flashbacks.
I'll call over to see how Shark is doing shortly.
Merry Christmas to all. Updates later, of course.
Wednesday, December 24, 2008
Quick Physiology Lesson
Say, Mon, why all the talk about pee?
Basically the kidney filters the blood. If you replace that function with dialysis, you don't pee. Imagine not taking a leak. That's kind of a big deal, right? A lot of people aren't aware that folks who start dialysis just don't make any pee whatsoever. (Uncle Charlie never goes to the bathroom. What a freak!)
So what else does a kidney do?
Besides make you go to the head every time you have a beer, the kidney has many endocrine functions. Yep. It's the target organ for many of the bodies chemical signals. The pituitary makes anti-diuretic hormones that control water balance by directly controlling the H2O and K+ passing through the glomeruli. Aldosterone from the adrenal glands act on the kidney to control blood pressure. If the kidney does not function properly, the parathyroid gland becomes overactive and raises the blood calcium and phosphorus to dangerous levels, and thereby destroying bones, taxing the circulatory system, and driving your serum pH through the floor.
The kidney has two major endocrine hormones of it's own as well. Erythropoitin and renin. The former acts on the bone marrow to make red blood cells and the later sends the first in a cascade of signals in the maintenance of normal blood pressure.
So, just beyond filtering nitrogenous waste out of blood, it does a whole lotta important bidnezz.
FYI, dialysis only does a few of these things. It cannot replace the endocrine functions of that organ, therefore renal patients tend to be anemic and have sky high blood pressure. Even under medication it can be in the stroke producing neighborhood. No joke.
In Mark's case, high blood pressure contributed to a slightly enlarged left ventricle...which...get this... improves in 85% of the cases after renal graft. Huzzah.
So that is my cute little post about kidney physiology.
Thank you very much.
Monica Carmody
10th grade biology
Mrs. Smith's class
Basically the kidney filters the blood. If you replace that function with dialysis, you don't pee. Imagine not taking a leak. That's kind of a big deal, right? A lot of people aren't aware that folks who start dialysis just don't make any pee whatsoever. (Uncle Charlie never goes to the bathroom. What a freak!)
So what else does a kidney do?
Besides make you go to the head every time you have a beer, the kidney has many endocrine functions. Yep. It's the target organ for many of the bodies chemical signals. The pituitary makes anti-diuretic hormones that control water balance by directly controlling the H2O and K+ passing through the glomeruli. Aldosterone from the adrenal glands act on the kidney to control blood pressure. If the kidney does not function properly, the parathyroid gland becomes overactive and raises the blood calcium and phosphorus to dangerous levels, and thereby destroying bones, taxing the circulatory system, and driving your serum pH through the floor.
The kidney has two major endocrine hormones of it's own as well. Erythropoitin and renin. The former acts on the bone marrow to make red blood cells and the later sends the first in a cascade of signals in the maintenance of normal blood pressure.
So, just beyond filtering nitrogenous waste out of blood, it does a whole lotta important bidnezz.
FYI, dialysis only does a few of these things. It cannot replace the endocrine functions of that organ, therefore renal patients tend to be anemic and have sky high blood pressure. Even under medication it can be in the stroke producing neighborhood. No joke.
In Mark's case, high blood pressure contributed to a slightly enlarged left ventricle...which...get this... improves in 85% of the cases after renal graft. Huzzah.
So that is my cute little post about kidney physiology.
Thank you very much.
Monica Carmody
10th grade biology
Mrs. Smith's class
Tables Turning
Last night, my drive home was white knuckle. I made it all the way home and then couldn't get into my driveway. I slid back toward the fire hydrant across the street, put it into park and did not budge. I threw it in reverse and skidded to a stop due to the curb in front of my house. Aaaaand that's where the damn thing stayed. Ripe for the T-boning by half-assed drivers slipping through the stop sign on our corner.
During the night, a few people drove up and over the curbs, and even narrowly missing a street sign, but our car remained unscathed.
Now on to more renal issues.
Mom-in-law saw the fellas this morning and Shark was up moving around. And Mark was of course still stoned and on diphenhydramine to fight off the opiate itches. If you tell him to stop scratching, the urge to itch gets worse. Fun!
I came in at 1:30 this afternoon. Mark is watching stupid TV shows, wearing his glasses and chilling out in his private room. All fluid challenges on the kidney are done and he is probably got an extra 7L of fluid in his system, which is a typical post renal transplant target. His pee isn't the alarming blood red it was yesterday and is quickly approaching a normal tint.
Mark is having some fun mini-hallucinations. He saw a wooden tiki figure on the back of Shark's hospital gown. Then while reading some medical literature, he saw the the hospital insignia move around the page. More fun!
Shark is having a terrible day in comparison. It's as though the both of them have traded conditions over night. Shark is horribly nauseated (puking with an incision is one of top 5 things you don't want to ever do) and hurting all over. I told him yesterday he should have taken advantage of the morphine pump while he still had it. Percocet and Mr. Darling do not mix. He looks about 6 months pregnant. The nurse doing her hard-ass duty informed me that he needs to keep sitting up and moving to get those gases out of his abdomen. It's the only way. The anti-nausea meds are useless.
Shark is not a happy camper.
:-(
During the night, a few people drove up and over the curbs, and even narrowly missing a street sign, but our car remained unscathed.
Now on to more renal issues.
Mom-in-law saw the fellas this morning and Shark was up moving around. And Mark was of course still stoned and on diphenhydramine to fight off the opiate itches. If you tell him to stop scratching, the urge to itch gets worse. Fun!
I came in at 1:30 this afternoon. Mark is watching stupid TV shows, wearing his glasses and chilling out in his private room. All fluid challenges on the kidney are done and he is probably got an extra 7L of fluid in his system, which is a typical post renal transplant target. His pee isn't the alarming blood red it was yesterday and is quickly approaching a normal tint.
Mark is having some fun mini-hallucinations. He saw a wooden tiki figure on the back of Shark's hospital gown. Then while reading some medical literature, he saw the the hospital insignia move around the page. More fun!
Shark is having a terrible day in comparison. It's as though the both of them have traded conditions over night. Shark is horribly nauseated (puking with an incision is one of top 5 things you don't want to ever do) and hurting all over. I told him yesterday he should have taken advantage of the morphine pump while he still had it. Percocet and Mr. Darling do not mix. He looks about 6 months pregnant. The nurse doing her hard-ass duty informed me that he needs to keep sitting up and moving to get those gases out of his abdomen. It's the only way. The anti-nausea meds are useless.
Shark is not a happy camper.
:-(
Tuesday, December 23, 2008
Pain Managment & Fluid Challenge
Brave Shark is up and reading in his room. He was cracking them up in recovery!!! I'm so incredibly grateful that he seems to be in very little pain. Thus far, he says he feels overfull like he had some really really bad Chinese and washed it down with a gallon of chili. The stinker has only used 1.4mg of morphine. (I wish he'd share the rest with me so I can get some sleep.) I suspect when they make him sit up more, he'll be feeling it. But for now, so far, so great.
OTOH, Mark's ride back up to his room after 2.5 hours in recovery was agonizing. And he was in a lot of pain around his incision. Morphine didn't touch it and so they ordered him some Dilaudid. At 5PM he's a little more comfortable.
Would you believe he's already put out somewhere between 3-5L of urine? In an effort to fluid challenge his new kidney, they are pumping in over 1300mL/hr. of fluids. So far, so good.
I'd be driving home, but it's rush hour and...
OTOH, Mark's ride back up to his room after 2.5 hours in recovery was agonizing. And he was in a lot of pain around his incision. Morphine didn't touch it and so they ordered him some Dilaudid. At 5PM he's a little more comfortable.
Would you believe he's already put out somewhere between 3-5L of urine? In an effort to fluid challenge his new kidney, they are pumping in over 1300mL/hr. of fluids. So far, so good.
I'd be driving home, but it's rush hour and...
Mark is in Recovery
I don't know how I feel about Dr. Pelletier (Mark's surgeon) using the word oozy. Nevertheless, I thanked him profusely as he just finished up a good 4+ hour surgery.
He told me that the kidney looks extremely healthy and had in fact 5 vessels, not the standard issue 2. In other words, three g'zintas (arteries) and two g'zouttas (veins). Since there was quite a bit of vascular surgery to install it, it took longer.
The oozy part came in at the end when he cautioned that some of the internal sutures appeared just the tiniest bit leaky, but that he wasn't too concerned. If Mark's blood count drops or they see swelling, they'll take him back to the OR and see if they can stem it. Otherwise, he believes there's a very good chance it will resolve on it's own.
Mark immediately began producing pee!!! Crazy sentence, huh? But, golly that's awesome!
Oh, and if I haven't mentioned it, they gave Mark a boatload of anti-rejection meds first thing this morning.
Shark is in Recovery
I have in my sweaty little hand a photograph of Shark's inferior vena cava. It was supposed to be of Shark's kidney, but the surgeon forgot to take the picture before he handed it over to Mark's surgeon. I think it's hilarious that Shark asked for photos. And I think it's even cooler than his doctor attempted it.
He ran back to the OR area to see if he can get a picture of the kidney after it is attached to Mark's ureter and renal vessels.
Yes, I know. I run with a crowd of weirdos. But we understand each other.
What's interesting is that it is ONE HUGE KIDNEY according to the surgeon.
In fact, from these photos, you can see that not just one renal artery and renal vein, but he has an extra renal artery. No wonder that man can put away the iced tea and well, uh, put it back out again!
Woe be to my husband's bladder until he gets used to that kind of flow rate!
WARNING: Images might be too ewww for the squeamish.
http://picasaweb.google.com/monica.beadles/SharkSVenaCava?authkey=fUlheoz8O9s&feat=directlink
He ran back to the OR area to see if he can get a picture of the kidney after it is attached to Mark's ureter and renal vessels.
Yes, I know. I run with a crowd of weirdos. But we understand each other.
What's interesting is that it is ONE HUGE KIDNEY according to the surgeon.
In fact, from these photos, you can see that not just one renal artery and renal vein, but he has an extra renal artery. No wonder that man can put away the iced tea and well, uh, put it back out again!
Woe be to my husband's bladder until he gets used to that kind of flow rate!
WARNING: Images might be too ewww for the squeamish.
http://picasaweb.google.com/monica.beadles/SharkSVenaCava?authkey=fUlheoz8O9s&feat=directlink
Whoa!
Momma slept a whole 5 hours last night. Who could sleep with this sort of excitement going on?
So I got up at 4AM sharp thanks to the flatulent canine. I put her outside and started my morning. I was out the door by 5:30. Bang zoom!
I show up in Mark's room and he's a mess. He was admitted with hyperkalemia. Apparently, the doctors were using some little known voodoo to lower his potassium (K+) levels. It involved giving my non-diabetic husband insulin.
Nurses followed this news with surgery postponement. Five more organs became available over night. And these surgeries usually cannot wait. They have a short window in which to get resources together and examine the incoming pancreii (?) and such.
Shark did sleep a total of four hours. With drugs.
Just as I get off the phone with MIL letting her know the news, orderlies arrive to take the boys to the previously delayed surgery! Whiplash. It's ON NOW!
Remember when you were kids and you pushed together two chairs from the dining room and put a sofa cushion over them to serve as a roof? Well The Atrium, the surgical waiting area, is the gap between two previously disconnected buildings over which they slapped a "sofa cushion" roof. Here's my view from The Atrium:
Shark is the nom de nick of Mark Darling. It's been his nickname as long as I've known him. It's sorta ironic because he's a big pussycat. Plus I think it stuck because it distinguishes him nicely from my Mark.
So I got up at 4AM sharp thanks to the flatulent canine. I put her outside and started my morning. I was out the door by 5:30. Bang zoom!
I show up in Mark's room and he's a mess. He was admitted with hyperkalemia. Apparently, the doctors were using some little known voodoo to lower his potassium (K+) levels. It involved giving my non-diabetic husband insulin.
Procedure:
Infuse calcium gluconate, sodium barcarbonate, a beta-2-agonist, and then crash the whole mutha with insulin. Patient's blood glucose gets lower than a snake's belly. Patient sweats profusely, gets cold, lies sleepless in bed all night. K+ returns to safer levels.
Then give the patient (read: quivering bowl of jelly) some glucose to bring him back from the brink of diabetic shock.
Nurses followed this news with surgery postponement. Five more organs became available over night. And these surgeries usually cannot wait. They have a short window in which to get resources together and examine the incoming pancreii (?) and such.
Shark did sleep a total of four hours. With drugs.
Just as I get off the phone with MIL letting her know the news, orderlies arrive to take the boys to the previously delayed surgery! Whiplash. It's ON NOW!
Remember when you were kids and you pushed together two chairs from the dining room and put a sofa cushion over them to serve as a roof? Well The Atrium, the surgical waiting area, is the gap between two previously disconnected buildings over which they slapped a "sofa cushion" roof. Here's my view from The Atrium:
Shark is the nom de nick of Mark Darling. It's been his nickname as long as I've known him. It's sorta ironic because he's a big pussycat. Plus I think it stuck because it distinguishes him nicely from my Mark.
Monday, December 22, 2008
Mark, Shark, and The Day Before the Big Day
I just got back from six hours at the hospital. The guys checked in and got comfortable. Soon after figuring where each of them would stay, the guys were questioned, poked, prodded and introduced to a whole team of doctors and nurses.
Shark is in surprisingly good spirits, and he may very well pun one of the nurses to death. Part of me has pity on the hospital staff who have to come in contact with him, because he can be a major clown (especially if he's nervous, like now). For his sacrifice, he gets a private room.
Mark is just calm. He's a professional patient at this stage in the game. He isn't in a private room, but a bank of beds solely for the people awaiting transplant. There are four semi-private beds right by the nurse's station, and for a while he was the only transplant scheduled for the next 24 hours.
While we spent the afternoon on the 9th floor, three additional transplants were underway for folks who got the call. In other words, cadaveric organs became available. As our Christmas seems to bring us a blessing and as well for the other organ recipients, tragedy hit the families of two souls. It makes us all the more speechless about what our friend is willing to do for Mark and our family. If we didn't consider Shark family already, he certainly is now.
Shark, who has rarely been ill a day in his life, is in for a journey. He told the nurse that he has no point of reference for pain. Is a tooth extraction pain? He's never even broken a bone. They assured him that he will be getting some good drugs. As will Mark.
One of the transplant residents commented on Shark's size. Shark is 6'4" and somewhere in the 240 range. Mark is 5'7" and currently hovering around 163. The doc joked that "it's a lot of kidney" for a guy Mark's size.
Everyone as OSU today seemed upbeat and optimistic. And I'm going to bed tonight feeling the same way. My children are staying the night with Grandma, so it's just me and the dog bedding down.
My alarm clock is set for 5:30AM. I'm going over to the hospital before 6AM. Shark will be taken for his operation at 6:30, and then Mark's begins at 7:15. I'll bring my laptop with me and try and keep everyone abreast of the progress.
Keep praying for all of us that we may have strength, health, and patience. Your kindness means the world to the whole extended Beadles family.
Much love.
Shark is in surprisingly good spirits, and he may very well pun one of the nurses to death. Part of me has pity on the hospital staff who have to come in contact with him, because he can be a major clown (especially if he's nervous, like now). For his sacrifice, he gets a private room.
Mark is just calm. He's a professional patient at this stage in the game. He isn't in a private room, but a bank of beds solely for the people awaiting transplant. There are four semi-private beds right by the nurse's station, and for a while he was the only transplant scheduled for the next 24 hours.
While we spent the afternoon on the 9th floor, three additional transplants were underway for folks who got the call. In other words, cadaveric organs became available. As our Christmas seems to bring us a blessing and as well for the other organ recipients, tragedy hit the families of two souls. It makes us all the more speechless about what our friend is willing to do for Mark and our family. If we didn't consider Shark family already, he certainly is now.
Shark, who has rarely been ill a day in his life, is in for a journey. He told the nurse that he has no point of reference for pain. Is a tooth extraction pain? He's never even broken a bone. They assured him that he will be getting some good drugs. As will Mark.
One of the transplant residents commented on Shark's size. Shark is 6'4" and somewhere in the 240 range. Mark is 5'7" and currently hovering around 163. The doc joked that "it's a lot of kidney" for a guy Mark's size.
Everyone as OSU today seemed upbeat and optimistic. And I'm going to bed tonight feeling the same way. My children are staying the night with Grandma, so it's just me and the dog bedding down.
My alarm clock is set for 5:30AM. I'm going over to the hospital before 6AM. Shark will be taken for his operation at 6:30, and then Mark's begins at 7:15. I'll bring my laptop with me and try and keep everyone abreast of the progress.
Keep praying for all of us that we may have strength, health, and patience. Your kindness means the world to the whole extended Beadles family.
Much love.
Friday, December 19, 2008
OSU Called with the Admitting Information
That's right. All preparations are done. They were given directions for check-in for Monday, etc.
Why, yes, I'm a nervous wreck.
So this weekend, our families are celebrating Christmas. Tonight we kick things off with our son Paul's piano recital/Christmas concert. Tomorrow is our "Christmas Eve" which we will spend at my in-laws. Sunday is our Christmas day, celebrated on the 4th Sunday of Advent!
Merry Christmas.Wednesday, December 17, 2008
2 More Dialysis Treatments
Yesterday, Shark and Mark had their final crossmatch (where serums are mixed to see if there is any reactivity between donor and recipient). Considering we all hang out together and seem to share the same cold germs, etc., I imagine there won't be any crossmatch reactions.
Today, we hope to hear from OSU for the official report regarding Shark's donor profile.
At dialysis this morning, we found out that Mark's serum albumin and hemoglobin is totally within normal range! This is fantastic news. In 1991, when he received his first kidney, he was nowhere near normal parameters. In the intervening years, there's been a lot of research into maintaining blood protein levels and they've found that patients heal more quickly and with fewer complications from surgery. Dialysis and appetite loss are the main culprits keeping albumin levels low. I've been cooking like a fiend to counteract it. (Renal diet is great for Mark. I however, have gained a sturdy 10 lbs. eating it. Boo for me.)
Keepin' y'all in the loop.
Today, we hope to hear from OSU for the official report regarding Shark's donor profile.
At dialysis this morning, we found out that Mark's serum albumin and hemoglobin is totally within normal range! This is fantastic news. In 1991, when he received his first kidney, he was nowhere near normal parameters. In the intervening years, there's been a lot of research into maintaining blood protein levels and they've found that patients heal more quickly and with fewer complications from surgery. Dialysis and appetite loss are the main culprits keeping albumin levels low. I've been cooking like a fiend to counteract it. (Renal diet is great for Mark. I however, have gained a sturdy 10 lbs. eating it. Boo for me.)
Keepin' y'all in the loop.
Monday, December 15, 2008
Kidney Transplant Update Blog Headquarters
For the foreseeable future, I'm going to keep the lines of communication open to everyone regarding Mark's fast approaching surgery.
Monday, Dec. 22 Mark will complete his final dialysis session at the Dubin DaVita clinic. Those folks at DaVita have been wonderful and I give them much of the credit in helping Mark get strong enough for surgery.
On noon that day, Shark and Mark will be checking into Rhodes Hall at OSU.
The following morning, Shark will be the first to get wheeled into the OR. His surgery will take 3 hours max. While he's being worked on, Mark's surgery will begin. Mark's operation will likely take 3-4 hours.
Recovery times vary for both donor and recipient, so I don't know when I'll be able to check on them.
OSU has WI-FI throughout most of the campus, so I hope to bring my handy dandy laptop along with.
Check back here for updates or subscribe through RSS.
Keep us all in your prayers.
Monday, Dec. 22 Mark will complete his final dialysis session at the Dubin DaVita clinic. Those folks at DaVita have been wonderful and I give them much of the credit in helping Mark get strong enough for surgery.
On noon that day, Shark and Mark will be checking into Rhodes Hall at OSU.
The following morning, Shark will be the first to get wheeled into the OR. His surgery will take 3 hours max. While he's being worked on, Mark's surgery will begin. Mark's operation will likely take 3-4 hours.
Recovery times vary for both donor and recipient, so I don't know when I'll be able to check on them.
OSU has WI-FI throughout most of the campus, so I hope to bring my handy dandy laptop along with.
Check back here for updates or subscribe through RSS.
Keep us all in your prayers.
Thursday, November 13, 2008
Sleeping Easy Tonight
What about the boys?
At last week's appointment with Dr. S. (my psychiatrist), I brought up something non-trivial. I told her that my task, to some degree is to keep a certain level of normalcy in the lives of my kids. It's not solely my job. Sure, Grandma, Hubby, and Uncle Shark are around.
I told her that, although I honestly wasn't feeling riddled with guilt, I had some concerns about them. Especially emotionally/psychologically.
When Daddy is chronically ill, the kids know. It bothers them that Dad hasn't been able to go hiking, take them to lessons or school. Dad, until recently didn't have the energy to stay up long past 7PM. Dad wasn't doing normal Dad things, like going to work and playing his instruments.
W00t, yeah, now Mark is feeling much better than say, three months ago. (Gina, he's a far cry from when you came to see us in August.)
I have some insight into how they might feel. It's not the same situation, but it mirrors certain aspects. My dad, henceforth will be called Al, was handicapped for much of my lifetime. Al couldn't take us fishing or camping. He didn't run along side our bikes teaching us to ride. Hell, we took off our own training wheels because Al couldn't.
Consequently, I felt like I was missing out to some degree. Most of the time I didn't give his handicap much thought, but there were times that it was obviously annoying to a dumb kid like yours truly. Occasionally I was bummed out for Al, but not normally. Ya see, kids tend to be the most self-centered creatures on the planet. It's a fact! Kids aren't too sympathetic. They aren't designed to be.
However, when I was, say, in high school, Al's health went significantly downhill. And then I was faced with the very real possibility of him dying. And that scared me shitless. I spent a lot of time having anxiety attacks, emotionally outbursts and vague but gnawing anger. Towards the end of high school, all the anxiety turned into plain honest-to-God depression. All of that time was spent without the aid and assistance of a shrink or even a school guidance counselor.
So, given my experience, you can see I'd have some concern for my kids while Mark is having health problems and awaiting surgery, etc.
Dr. S. told me to take a step back and not put my emotional baggage into the equation in relation to the boys. She asked if they were exhibiting anything out of the ordinary vis-a-vis Daddy's heath. I told her that Paul had exactly one emotional breakdown at school where I was called. Paul also mentioned to the school secretary that he dreads weekends "because dad mostly sleeps and we can't do anything fun." Sean is going through puberty, hence all bets are off. And Luke is blithely unaware and chronically happy no matter what.
She asked about their grades. Mostly As. As in, only one B. As in, super grade reports.
The greatest indicator of how well children are dealing with adversity (yes, she said adversity) are their grades.
Good.
She also said that the problems her, and most of her colleagues, see in children stem from kids who never had any adversity. In fact, if kids never face real stressors, they will never learn to cope. In fact, children who have survived and thrived in the face of adversity are better able to deal with problems throughout life. These kids will have better priorities, will understand their own coping mechanisms, and aren't intimidated by the tougher challenges.
Conversely, kids who have everything handed to them, have all their ouchies salved over, have everything they want, when they want it... these kids will (her words, not mine) "contribute to the further infantilization of young adults". Peter Pan Syndrome, anybody?
Nice to know I'm not totally going to screw these kids up permanently. Ya know?
At last week's appointment with Dr. S. (my psychiatrist), I brought up something non-trivial. I told her that my task, to some degree is to keep a certain level of normalcy in the lives of my kids. It's not solely my job. Sure, Grandma, Hubby, and Uncle Shark are around.
I told her that, although I honestly wasn't feeling riddled with guilt, I had some concerns about them. Especially emotionally/psychologically.
When Daddy is chronically ill, the kids know. It bothers them that Dad hasn't been able to go hiking, take them to lessons or school. Dad, until recently didn't have the energy to stay up long past 7PM. Dad wasn't doing normal Dad things, like going to work and playing his instruments.
W00t, yeah, now Mark is feeling much better than say, three months ago. (Gina, he's a far cry from when you came to see us in August.)
I have some insight into how they might feel. It's not the same situation, but it mirrors certain aspects. My dad, henceforth will be called Al, was handicapped for much of my lifetime. Al couldn't take us fishing or camping. He didn't run along side our bikes teaching us to ride. Hell, we took off our own training wheels because Al couldn't.
Consequently, I felt like I was missing out to some degree. Most of the time I didn't give his handicap much thought, but there were times that it was obviously annoying to a dumb kid like yours truly. Occasionally I was bummed out for Al, but not normally. Ya see, kids tend to be the most self-centered creatures on the planet. It's a fact! Kids aren't too sympathetic. They aren't designed to be.
However, when I was, say, in high school, Al's health went significantly downhill. And then I was faced with the very real possibility of him dying. And that scared me shitless. I spent a lot of time having anxiety attacks, emotionally outbursts and vague but gnawing anger. Towards the end of high school, all the anxiety turned into plain honest-to-God depression. All of that time was spent without the aid and assistance of a shrink or even a school guidance counselor.
So, given my experience, you can see I'd have some concern for my kids while Mark is having health problems and awaiting surgery, etc.
Dr. S. told me to take a step back and not put my emotional baggage into the equation in relation to the boys. She asked if they were exhibiting anything out of the ordinary vis-a-vis Daddy's heath. I told her that Paul had exactly one emotional breakdown at school where I was called. Paul also mentioned to the school secretary that he dreads weekends "because dad mostly sleeps and we can't do anything fun." Sean is going through puberty, hence all bets are off. And Luke is blithely unaware and chronically happy no matter what.
She asked about their grades. Mostly As. As in, only one B. As in, super grade reports.
The greatest indicator of how well children are dealing with adversity (yes, she said adversity) are their grades.
Good.
She also said that the problems her, and most of her colleagues, see in children stem from kids who never had any adversity. In fact, if kids never face real stressors, they will never learn to cope. In fact, children who have survived and thrived in the face of adversity are better able to deal with problems throughout life. These kids will have better priorities, will understand their own coping mechanisms, and aren't intimidated by the tougher challenges.
Conversely, kids who have everything handed to them, have all their ouchies salved over, have everything they want, when they want it... these kids will (her words, not mine) "contribute to the further infantilization of young adults". Peter Pan Syndrome, anybody?
Nice to know I'm not totally going to screw these kids up permanently. Ya know?
Tuesday, November 11, 2008
The shit was coming up to my chin. It wouldn't be long before I'd drown in it, I thought.
Self evaluation isn't all it's cracked up to be. Being your own shrink has as much success as being your own lawyer. You're a fool if you think you have the right perspective to judge your bearings. You just aren't capable. Like Schrödinger's kitteh!
My shrink is concerned about me. How do I know? She called back the next day, asking me how I was doing. Part of me believes that she was hoping Mark answered, hoping to get the straight dope on what's doing.
I walked into her office last week not knowing what to talk about. My affect has been rather low. I have just the exact amount of energy necessary to get through the day, and no more. On the other hand, I didn't (and still don't) feel truly depressed. And the doc surprised the hell out of me. She insisted that I wasn't depressed. She's convinced me it is something a bit more pernicious.
How's this for an explanation:
When a person is depressed, ALL of their synapses are short on neurotransmitters. ALL systems are down. SHIELDS UP! Doctors prescribe your typical neurotransmitter re-uptake inhibitors to boost up every every synaptic bridge.
But what do you do when only some of them are hosed? What do you do when your overall mood appears to be low, but your cognitive abilities are razor sharp? What do you do when you actually have minimal drive, and accompanying energy, to make it through the day? What do you do when you are sleeping well at night?
Nothing medical is what you do.
No change in my Effexor or Trazodone levels.
Why?
Because a soldier in the field isn't depressed. Because a reasonably well treated prisoner of war isn't necessarily depressed. Because this is their reality for the time being.
Because an overworked mom of three with sincere and real concerns for the health of her husband is enough to make her question her own mental state, but not enough to make her stay in bed all day. Because being depressed and functional are mutually exclusive.
The human mind has ways of dealing under duress. According to my doc, I'm under duress. The mind puts on blinders so as to keep focus on survival. I can attest to this. The brain/mind lowers response to the abusive/intrusive/punishing input so that the rest of you keeps moving forward and living.
Am I at war? Am I getting Stockholm syndrome? Am I being physically or mentally attacked by anyone? No. I am not.
Have I got a shitload of life to deal with right now? Yes. Do I need to have a high affect and a jovial profile or a sharp sense of humor right now? No, I do not need it. Do I need to make sure my kids are clean, fed and well dressed? You betcha. Do I worry about every little aspect of Mark's health and recovery? No, I cannot. I'd drive myself mad and in that madness I'd no longer function.
So the shit is up to my chin.
But given my current situation, maybe I ought to remember that I'm on my knees in the cesspool, and I just gotta get up on my feet. I'm not going to drown in it unless I forget my life right now is a non-typical situation.
And this is why you need a professional to tell you what the hell is going on. Additionally, this is why you can't ever evaluate your own situation, because your perspective is skewed. Call it denial, call it protecting my sanity, call it blinders, but it's keeping me moving forward to the day when Mark's health is no longer the first topic of discussion, the fore of our thoughts, or the purpose of every day.
Self evaluation isn't all it's cracked up to be. Being your own shrink has as much success as being your own lawyer. You're a fool if you think you have the right perspective to judge your bearings. You just aren't capable. Like Schrödinger's kitteh!
My shrink is concerned about me. How do I know? She called back the next day, asking me how I was doing. Part of me believes that she was hoping Mark answered, hoping to get the straight dope on what's doing.
I walked into her office last week not knowing what to talk about. My affect has been rather low. I have just the exact amount of energy necessary to get through the day, and no more. On the other hand, I didn't (and still don't) feel truly depressed. And the doc surprised the hell out of me. She insisted that I wasn't depressed. She's convinced me it is something a bit more pernicious.
How's this for an explanation:
When a person is depressed, ALL of their synapses are short on neurotransmitters. ALL systems are down. SHIELDS UP! Doctors prescribe your typical neurotransmitter re-uptake inhibitors to boost up every every synaptic bridge.
But what do you do when only some of them are hosed? What do you do when your overall mood appears to be low, but your cognitive abilities are razor sharp? What do you do when you actually have minimal drive, and accompanying energy, to make it through the day? What do you do when you are sleeping well at night?
Nothing medical is what you do.
No change in my Effexor or Trazodone levels.
Why?
Because a soldier in the field isn't depressed. Because a reasonably well treated prisoner of war isn't necessarily depressed. Because this is their reality for the time being.
Because an overworked mom of three with sincere and real concerns for the health of her husband is enough to make her question her own mental state, but not enough to make her stay in bed all day. Because being depressed and functional are mutually exclusive.
The human mind has ways of dealing under duress. According to my doc, I'm under duress. The mind puts on blinders so as to keep focus on survival. I can attest to this. The brain/mind lowers response to the abusive/intrusive/punishing input so that the rest of you keeps moving forward and living.
Am I at war? Am I getting Stockholm syndrome? Am I being physically or mentally attacked by anyone? No. I am not.
Have I got a shitload of life to deal with right now? Yes. Do I need to have a high affect and a jovial profile or a sharp sense of humor right now? No, I do not need it. Do I need to make sure my kids are clean, fed and well dressed? You betcha. Do I worry about every little aspect of Mark's health and recovery? No, I cannot. I'd drive myself mad and in that madness I'd no longer function.
So the shit is up to my chin.
But given my current situation, maybe I ought to remember that I'm on my knees in the cesspool, and I just gotta get up on my feet. I'm not going to drown in it unless I forget my life right now is a non-typical situation.
And this is why you need a professional to tell you what the hell is going on. Additionally, this is why you can't ever evaluate your own situation, because your perspective is skewed. Call it denial, call it protecting my sanity, call it blinders, but it's keeping me moving forward to the day when Mark's health is no longer the first topic of discussion, the fore of our thoughts, or the purpose of every day.
Wednesday, August 20, 2008
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