Dear Friends,
7:40 am waiting with fingers crossed for the surgical team to tell me that I can go home
9:55 FREE AT LAST. GOING HOME.
12:05 Still waiting for paperwork to get done.
5:00 Arrived in Blacksburg, safe and sound. Thanks to Ed Valeev for driving
Well, I guess I am going to sign off now.
Thanks to all of you who were praying for me. I do think it was a cruel trick to all stop praying at 5 pm on Sunday though. :) Thanks for starting again.
You are all welcome to come over and visit, provided you aren't sick or in recent contact with anyone sick. Please no kids for now. If you'd like to call ahead, my cell number is (540) 998-0136. I will probably not be going anywhere before next Wednesday so for the most part, you can just drop by.
It's good to be home.
Wednesday, July 31, 2013
Tuesday, July 30, 2013
Day twenty one
Dear Friends,
Bummer, but it could be genuinely worse rather than just inconvenient. The story: Saturday's blood cultures showed infection (bad) but Sunday and Monday have both been negative. (good) Maybe a false positive; infections don't clear in a day. But they want three consecutive days of negative cultures. Better to be safe than sorry with so much on the line. Bottom line: can't go home today, but very likely tomorrow. It'll be a day of walking, antibiotics, resting. Edward will be here soon to help get me home , but it won't be until tomorrow.
PS The food has gotten better. It's not that my taste buds are back. The cooking has improved.
Overall, my vital signs are all normal and Molly's (now my) kidney still continues to kick a__. I'm disappointed that I'm not going home, but in the grand scheme for things, it's only a day.
Bummer, but it could be genuinely worse rather than just inconvenient. The story: Saturday's blood cultures showed infection (bad) but Sunday and Monday have both been negative. (good) Maybe a false positive; infections don't clear in a day. But they want three consecutive days of negative cultures. Better to be safe than sorry with so much on the line. Bottom line: can't go home today, but very likely tomorrow. It'll be a day of walking, antibiotics, resting. Edward will be here soon to help get me home , but it won't be until tomorrow.
PS The food has gotten better. It's not that my taste buds are back. The cooking has improved.
Overall, my vital signs are all normal and Molly's (now my) kidney still continues to kick a__. I'm disappointed that I'm not going home, but in the grand scheme for things, it's only a day.
Monday, July 29, 2013
Day twenty
Dear Friends,
Bizarre update: Molly's kidney is working so well, they are having to give me phosphorus. This after years where it was my principal concern for being too high. Can't I just drink a Coke?
Woke up feeling normal again. Vital signs as they should be. They removed the Foley catheter. More comfortable now. Managed to get myself out of bed without help.
Other biological functions getting back to normal. (if you know what I mean)
They're not going to let me go home because of the infection. They want to know what it is and have a good plan in place to treat it. Maybe Tuesday. So it's a day of antibiotics, sitting around and being forced to eat terrible food.
Well, now I'm a surgeon. I accidentally pulled on my JP drain and almost completely pulled it out. They were going to remove it eventually anyway, but I'm Jason Bourne. Hurt like hell. Except for piddling little IVs, I am free of plastic tubes for the first time since May 15 of last year.
m a surgeon.
Bizarre update: Molly's kidney is working so well, they are having to give me phosphorus. This after years where it was my principal concern for being too high. Can't I just drink a Coke?
Woke up feeling normal again. Vital signs as they should be. They removed the Foley catheter. More comfortable now. Managed to get myself out of bed without help.
Other biological functions getting back to normal. (if you know what I mean)
They're not going to let me go home because of the infection. They want to know what it is and have a good plan in place to treat it. Maybe Tuesday. So it's a day of antibiotics, sitting around and being forced to eat terrible food.
Well, now I'm a surgeon. I accidentally pulled on my JP drain and almost completely pulled it out. They were going to remove it eventually anyway, but I'm Jason Bourne. Hurt like hell. Except for piddling little IVs, I am free of plastic tubes for the first time since May 15 of last year.
m a surgeon.
Sunday, July 28, 2013
Day nineteen
Dear Friends,
A good news / bad news kind of a day. The good news was that early this morning, I had a highly successful 1 hr operation to remove some clotted blood (sorry Aa) and clean up the incision. They probably didn't even cut anything and told that I would feel better afterwards (less bloated.) Anyway, went great and I was starving for lunch.
It turns out that I don't react well to general anesthesia, but the reaction is sometimes delayed for hours after surgery. Happened on Thursday where I start uncontrollable shaking for minutes and can't catch my breath. Usually it resolves itself, but not today. Lasted for an hour and required drug intervention. Called rigors (pronounced with a long I). Anyway, instead of stepping down to a lower care unit on the way to getting out of here, I'm stuck for now. Maybe Tuesday. Kidney is still working great.
A good news / bad news kind of a day. The good news was that early this morning, I had a highly successful 1 hr operation to remove some clotted blood (sorry Aa) and clean up the incision. They probably didn't even cut anything and told that I would feel better afterwards (less bloated.) Anyway, went great and I was starving for lunch.
It turns out that I don't react well to general anesthesia, but the reaction is sometimes delayed for hours after surgery. Happened on Thursday where I start uncontrollable shaking for minutes and can't catch my breath. Usually it resolves itself, but not today. Lasted for an hour and required drug intervention. Called rigors (pronounced with a long I). Anyway, instead of stepping down to a lower care unit on the way to getting out of here, I'm stuck for now. Maybe Tuesday. Kidney is still working great.
Saturday, July 27, 2013
Day eighteen
Dear Friends,
Molly has been able to check out of the hospital and go home!
I, on the other hand, have faced a little bit of a setback. Had a terrible night. New roommate had alarms going off all night long. He's also hard of hearing, so they were yelling at him. Didn't get good sleep. Woke up with a headache and significant fever. May have an infection. Maybe just a side effect. Also have hematoma that needs to be fixed.
This morning was the worst and things are better now (5 pm). Couldn't eat breakfast.
Just as soon as Molly's kidney was transplanted into me, it set about cleaning up my mess. In 12 hours, it apparently made two gallons of pee, reducing my creatinine level to near normal.
I am mostly off of narcotics for pain now and relying on Tylenol. Ate a normal dinner, so for now, at least, things are looking up. I do have to go back to the OR for a tune up in the morning.
Molly has been able to check out of the hospital and go home!
I, on the other hand, have faced a little bit of a setback. Had a terrible night. New roommate had alarms going off all night long. He's also hard of hearing, so they were yelling at him. Didn't get good sleep. Woke up with a headache and significant fever. May have an infection. Maybe just a side effect. Also have hematoma that needs to be fixed.
This morning was the worst and things are better now (5 pm). Couldn't eat breakfast.
Just as soon as Molly's kidney was transplanted into me, it set about cleaning up my mess. In 12 hours, it apparently made two gallons of pee, reducing my creatinine level to near normal.
I am mostly off of narcotics for pain now and relying on Tylenol. Ate a normal dinner, so for now, at least, things are looking up. I do have to go back to the OR for a tune up in the morning.
Friday, July 26, 2013
Day seventeen
Dear Friends,
The old urban legend is that Molly woke up in a bathtub full of ice this morning with an incision in her back, missing a kidney and with no recollection of what happened.
More later, but I feel fine this morning, except for pain. Fentanyl is my friend. Irene has stopped by to tell me that Molly is feeling better today, too.
Up and out of bed. Running laps around the hospital ward. LOL NO. But the getting out of bed part is true. Also ate solid food for lunch. Terrible food though. I might have to get someone to sneak me inn some real food.
Interestingly, from now on, no more "uncooked" lunch meat. Meaning no more subs unless they are toasted. No more eating at salad bars or chinese buffets. No more sushi. No raw oysters. No steak tartare. Small enough sacrifice for a long life.
Going to start waling in a little bit. That's my physical therapy for now. If I can, I will go see Molly. Getting intravenous drugs to knock down my immune system some more. Trying to take less pain reliever.
More later.
The old urban legend is that Molly woke up in a bathtub full of ice this morning with an incision in her back, missing a kidney and with no recollection of what happened.
More later, but I feel fine this morning, except for pain. Fentanyl is my friend. Irene has stopped by to tell me that Molly is feeling better today, too.
Up and out of bed. Running laps around the hospital ward. LOL NO. But the getting out of bed part is true. Also ate solid food for lunch. Terrible food though. I might have to get someone to sneak me inn some real food.
Interestingly, from now on, no more "uncooked" lunch meat. Meaning no more subs unless they are toasted. No more eating at salad bars or chinese buffets. No more sushi. No raw oysters. No steak tartare. Small enough sacrifice for a long life.
Going to start waling in a little bit. That's my physical therapy for now. If I can, I will go see Molly. Getting intravenous drugs to knock down my immune system some more. Trying to take less pain reliever.
More later.
Thursday, July 25, 2013
Wednesday, July 24, 2013
Day fifteen
Dear Friends,
Molly has a quote that accompanies her email messages: "Don't miss the beauty of your life by lusting after a mythical, perfect one." Words to live by. No point in a woe-is-me attitude during this challenge.
And so we reach the final day of preparations. Just a couple of hours of dialysis later. Several visitors expected today including my colleague, Daniel Crawford, and my former student and mentee, Elizabeth Spencer. Molly and her partner, Irene, arrive late this afternoon/early evening. We're planning to get together.
Another day of liquid food. I guess I never realized how we are inundated by ads for food. I did appreciate how even a little hunger can be a distraction and impediment to feeling good and performing your best. Makes me want to commit even more to eradicating hunger, especially with kids.
Medical curiosity: I have always been CMV (cytomegalovirus) negative and I know because I donate blood and the blood bank is always calling me (also O+). Now suddenly, I have converted to CMV positive. Possibilities are that it is a false positive; it was a latent infection that was unmasked as my immune system was moderated or I've been very recently infected. Anyway, no big deal. I just have to take antivirals for a while after the transplant. I think my days of donating blood are over with anyway. Too bad.
After my post today, I will be signing off for a couple of days. Diego Troya might post to this blog, but otherwise, his email is troya@vt.edu. Mom's cell phone number is (925) 451-9929. I have really appreciated all of the support that I have received and I also have to commend the UVa hospital staff for taking such good care of me.
Molly has a quote that accompanies her email messages: "Don't miss the beauty of your life by lusting after a mythical, perfect one." Words to live by. No point in a woe-is-me attitude during this challenge.
And so we reach the final day of preparations. Just a couple of hours of dialysis later. Several visitors expected today including my colleague, Daniel Crawford, and my former student and mentee, Elizabeth Spencer. Molly and her partner, Irene, arrive late this afternoon/early evening. We're planning to get together.
Another day of liquid food. I guess I never realized how we are inundated by ads for food. I did appreciate how even a little hunger can be a distraction and impediment to feeling good and performing your best. Makes me want to commit even more to eradicating hunger, especially with kids.
Medical curiosity: I have always been CMV (cytomegalovirus) negative and I know because I donate blood and the blood bank is always calling me (also O+). Now suddenly, I have converted to CMV positive. Possibilities are that it is a false positive; it was a latent infection that was unmasked as my immune system was moderated or I've been very recently infected. Anyway, no big deal. I just have to take antivirals for a while after the transplant. I think my days of donating blood are over with anyway. Too bad.
After my post today, I will be signing off for a couple of days. Diego Troya might post to this blog, but otherwise, his email is troya@vt.edu. Mom's cell phone number is (925) 451-9929. I have really appreciated all of the support that I have received and I also have to commend the UVa hospital staff for taking such good care of me.
Tuesday, July 23, 2013
Day fourteen
Dear Friends,
Temperature normal this morning. It appears that the slight fever I was running yesterday was nothing. Very happy about that.
It's moving day. Mom and I are switching to a regular hotel within easy walking distance of the hospital. Right after dialysis this morning, we will make the move. I will probably walk to my surgery on Thursday. Today is potentially my last ever full dialysis treatment, which is exciting. I have a short dialysis treatment tomorrow.
A bit more technical information: in some ways, I think my operation is less invasive than Molly's. This is because they don't have to put my new kidney in a"kidney" spot. It isn't like an oil filter that has to go where the oil filter goes. They just find a convenient spot to connect to blood and the bladder, in this case in my abdomen, but outside of the peritoneum. Part of the reason why they won't be removing my bad kidneys (at least for now) is that it is a complicated surgery because they are so big. In Molly's operation, they have to go in and get her left kidney.
Had my first protein drink for breakfast this morning. Palatable, but definitely not as satisfying as sausage, eggs, home fries, biscuit and Mom's most excellent home-made apricot jam.
I finally got of picture of Wonderful Brigid Wonderly. She has been an angel through all of this. She's usually smiling a lot more.
Some interesting math: when I am doing IVIG (immunoglobulin), I receive 400 mL of fluid. If there are 20 drops in a mL, then this represents ~8000 drops. Roughly speaking, each container (of which I've received 7) cost on the order of $8000. So each tiny drop costs a dollar.
Temperature normal this morning. It appears that the slight fever I was running yesterday was nothing. Very happy about that.
It's moving day. Mom and I are switching to a regular hotel within easy walking distance of the hospital. Right after dialysis this morning, we will make the move. I will probably walk to my surgery on Thursday. Today is potentially my last ever full dialysis treatment, which is exciting. I have a short dialysis treatment tomorrow.
A bit more technical information: in some ways, I think my operation is less invasive than Molly's. This is because they don't have to put my new kidney in a"kidney" spot. It isn't like an oil filter that has to go where the oil filter goes. They just find a convenient spot to connect to blood and the bladder, in this case in my abdomen, but outside of the peritoneum. Part of the reason why they won't be removing my bad kidneys (at least for now) is that it is a complicated surgery because they are so big. In Molly's operation, they have to go in and get her left kidney.
Had my first protein drink for breakfast this morning. Palatable, but definitely not as satisfying as sausage, eggs, home fries, biscuit and Mom's most excellent home-made apricot jam.
I finally got of picture of Wonderful Brigid Wonderly. She has been an angel through all of this. She's usually smiling a lot more.
Some interesting math: when I am doing IVIG (immunoglobulin), I receive 400 mL of fluid. If there are 20 drops in a mL, then this represents ~8000 drops. Roughly speaking, each container (of which I've received 7) cost on the order of $8000. So each tiny drop costs a dollar.
Monday, July 22, 2013
Day thirteen
Dear Friends,
We have entered the home stretch. I am having my last plasmapheresis treatment this morning. Two more IVIG infusions and two more dialysis treatments and that's all. I have to stop eating solid food after today and those of you who know how much I love to eat might surmise that not eating is going to be the hardest part of the last couple of weeks. :)
2 pm: every great story has to have last minute adversity to overcome and this is no different. I am running a low-grade fever and am feeling a little blah. Hopefully nothing that some rest can't fix.
3:15 pm: temp back to normal. maybe a false alarm. been napping
Had a lovely last solid food for a while dinner with Jim Tanko (the chair of my department) at Hamilton's on the Mall in C'ville. Feeling fine again, so it appears the scare was nothing. Relief.
We have entered the home stretch. I am having my last plasmapheresis treatment this morning. Two more IVIG infusions and two more dialysis treatments and that's all. I have to stop eating solid food after today and those of you who know how much I love to eat might surmise that not eating is going to be the hardest part of the last couple of weeks. :)
2 pm: every great story has to have last minute adversity to overcome and this is no different. I am running a low-grade fever and am feeling a little blah. Hopefully nothing that some rest can't fix.
3:15 pm: temp back to normal. maybe a false alarm. been napping
Had a lovely last solid food for a while dinner with Jim Tanko (the chair of my department) at Hamilton's on the Mall in C'ville. Feeling fine again, so it appears the scare was nothing. Relief.
Saturday, July 20, 2013
Day eleven
Dear Friends,
My A2 titer, the measure of my immune system's readiness to receive Molly's kidney, came in at 4! That is beyond excellent. Recall that it started at 128. The immunologist was hoping for 8-16 and lower is better. So that's the last hoop to jump through and it looks like this is really going to happen. I will continue with treatments to lower it more because they are already scheduled and because it lowers the possible need to do more treatments after the transplant. But 4 is really, really great. (For those of you who want a technical explanation, it appears that a cell surface receptor on the Klebsiella bacterium that I contracted before, just happens to accidentally be similar to one on an A blood cell. So getting sick caused an immune reaction to Molly's blood. A2 is a subtype of the A blood type with a lower density of A antigens)
I was also able to get a dialysis appointment early this morning (Saturday), so Mom and I will be driving home to Blacksburg in a few hours. We have no plans, other than laundry, so if you aren't sick and would like to stop by for a visit, we will be home around 4 and be home for about 24 hours. Please no kids though. And if someone in your household is sick, it would be better if you stayed away for now. Thanks for understanding.
One intriguing opportunity that I have after the operation is participation in the Transplant Games of America (http://www.transplantgamesofamerica.org/) for people who have donated or received an organ. It would be great to get well and then to start training. Discus. Perhaps that's my sport. But there are sports that I am already familiar with, including tennis, volleyball and cycling. Perhaps Molly and I can enter the golf together. The games in 2014 are in Houston, TX. In the summer. What are they thinking?
My A2 titer, the measure of my immune system's readiness to receive Molly's kidney, came in at 4! That is beyond excellent. Recall that it started at 128. The immunologist was hoping for 8-16 and lower is better. So that's the last hoop to jump through and it looks like this is really going to happen. I will continue with treatments to lower it more because they are already scheduled and because it lowers the possible need to do more treatments after the transplant. But 4 is really, really great. (For those of you who want a technical explanation, it appears that a cell surface receptor on the Klebsiella bacterium that I contracted before, just happens to accidentally be similar to one on an A blood cell. So getting sick caused an immune reaction to Molly's blood. A2 is a subtype of the A blood type with a lower density of A antigens)
I was also able to get a dialysis appointment early this morning (Saturday), so Mom and I will be driving home to Blacksburg in a few hours. We have no plans, other than laundry, so if you aren't sick and would like to stop by for a visit, we will be home around 4 and be home for about 24 hours. Please no kids though. And if someone in your household is sick, it would be better if you stayed away for now. Thanks for understanding.
One intriguing opportunity that I have after the operation is participation in the Transplant Games of America (http://www.transplantgamesofamerica.org/) for people who have donated or received an organ. It would be great to get well and then to start training. Discus. Perhaps that's my sport. But there are sports that I am already familiar with, including tennis, volleyball and cycling. Perhaps Molly and I can enter the golf together. The games in 2014 are in Houston, TX. In the summer. What are they thinking?
Friday, July 19, 2013
Day ten
Dear Friends,
Met with the surgeon, Dr. Brayman, yesterday. He is very optimistic that a good outcome can be achieved. Got some idea of the pre-op prep: no solid food after Monday. Laxatives on Tuesday. No food after midnight on Wednesday. (going to lose some weight) Into the hospital at 6 am on Thursday. Molly's operation will start about an hour before mine. Each of our operations will last about four hours.
I did find out about some of my limitations after the surgery. I probably won't be able to have a pet ever again. Certainly, not a cat (litterbox), bird or fish (similar problem) or a reptile (bacteria). I will have to be careful when gardening and will have to dismantle the compost heap. Lots of hand washing, of course. Still have to be careful (masking up) in crowded indoor spaces, at least for the first six months. No sick people and limited contact with school-aged kids/germ factories.
I should introduce you to my nurse coordinator, Brigid Wonderly. Brigid is the person who is shepherding me through this whole process and she is fittingly named because she is wonderful. When we were just figuring out where I needed to be each day at this big hospital, she would meet us and escort us to the right place. She coordinates all of the pre-op appointments and is the go-to person for any questions I have. She interfaces with Dr. Lobo, the immunologist and Dr. Brayman. She visits often during my treatments. But perhaps just as importantly, she is calm and calming.
So obviously, life-changing events prompt thoughts of life-changes. Yet, I think I am already quite content. I have great friends and family. I love my job. I have plenty of time to pursue my hobbies and interests. I don't know if there are a lot of things that I would change. On the other hand, I am inspired by Molly to do more for my community. There is a hunger problem in southwest Virginia that I think is deplorable. I try to do what I can, but I'm sure I can do more. I am intrigued by organizations that collect day-old food from restaurants and deliver it to food banks. I wonder if there is anything like that in the New River Valley.
Met with the surgeon, Dr. Brayman, yesterday. He is very optimistic that a good outcome can be achieved. Got some idea of the pre-op prep: no solid food after Monday. Laxatives on Tuesday. No food after midnight on Wednesday. (going to lose some weight) Into the hospital at 6 am on Thursday. Molly's operation will start about an hour before mine. Each of our operations will last about four hours.
I did find out about some of my limitations after the surgery. I probably won't be able to have a pet ever again. Certainly, not a cat (litterbox), bird or fish (similar problem) or a reptile (bacteria). I will have to be careful when gardening and will have to dismantle the compost heap. Lots of hand washing, of course. Still have to be careful (masking up) in crowded indoor spaces, at least for the first six months. No sick people and limited contact with school-aged kids/germ factories.
I should introduce you to my nurse coordinator, Brigid Wonderly. Brigid is the person who is shepherding me through this whole process and she is fittingly named because she is wonderful. When we were just figuring out where I needed to be each day at this big hospital, she would meet us and escort us to the right place. She coordinates all of the pre-op appointments and is the go-to person for any questions I have. She interfaces with Dr. Lobo, the immunologist and Dr. Brayman. She visits often during my treatments. But perhaps just as importantly, she is calm and calming.
So obviously, life-changing events prompt thoughts of life-changes. Yet, I think I am already quite content. I have great friends and family. I love my job. I have plenty of time to pursue my hobbies and interests. I don't know if there are a lot of things that I would change. On the other hand, I am inspired by Molly to do more for my community. There is a hunger problem in southwest Virginia that I think is deplorable. I try to do what I can, but I'm sure I can do more. I am intrigued by organizations that collect day-old food from restaurants and deliver it to food banks. I wonder if there is anything like that in the New River Valley.
Thursday, July 18, 2013
Day nine
Dear Friends,
A regular day of dialysis (with much drawing of blood for tests including the A2 titer (sorry Aarnes)) followed by meetings with the surgeon (this time for sure) and the post-op nurse coordinator. Then a meeting/exam with the nurse-anesthesiology team including a electrocardiogram.
I would be remiss if I didn't write about my support team, the people who make it so easy just to focus on getting better. Interestingly, my team has had a previous trial run: I had a bad car accident about five years ago (one of those mistakes I was talking about earlier) that required an extended hospital stay and so many people came to my rescue.
Of course, Mom is at the head of the list. At 79, she didn't hesitate to jump on a plane and fly out here to be with me both five years ago and now. She cooks and cleans and sits with me through many of the procedures. She meets with the doctors and nurses with me. She'll be here for a total of five weeks. I need to thank Dad too for lending her to me and taking care of himself during this time.
But perhaps the more remarkable story is the support that I receive from some of my colleagues in the Chemistry Department at Virginia Tech. Having been in a department (CU Boulder) that was cutthroat, it has been, and continues to be, an amazing experience to have colleagues who are like family.
I don't want to name names (except for one) for fear of offending or leaving someone out, but would like to tell you about the things that these wonderful people did for me during my accident recovery five years ago and more recently during my hospitalizations.
Diego Troya is like another little brother to me. He is the one who drove me home from Charlottesville after my rutuximab infusion (the first of my treatments to knock down my immune system before the transplant) in March. He was also the person who did the peritoneal dialysis (home) training with me about a year ago (over several days). And five years ago, he cooked for me (vegan enchiladas) and is generally around to help me whenever I need almost anything. We are together so often that some people wonder if we are a couple, but we're not (in case there are any single women reading this blog).
Five years ago, my colleagues took me to doctors appointments, arranged a driving schedule for bringing my Mom to the hospital each day, to bring her home in the evening and to generally support her so that she could support me. They cooked for her and brought her chocolate. Of course, they visited me in the hospital and cooked for me once I got out. Their children drew pictures for me and one would come to my room and read to me. I recall taking many a slow lap around the hospital floor with many of them, a T-stand in tow as I tried to get some exercise. They were incredibly patient with me.
Over the last year or so, they set up a website to coordinate who could drive me to and from dialysis when I got sick and wasn't able to drive myself. Once in a raging snowstorm. It sometimes feels like they had to set up the website so that they wouldn't fight over who was going to help me. You have no idea how that makes me feel. They coordinated to bring me food. If I needed someone to stay overnight, someone was always there.
It isn't easy being sick, but it is a whole lot easier to be sick with such wonderful friends (especially when my family is thousands of miles away). I never, and I mean never, feel like I'm going through this alone and that is a tremendous comfort.
A regular day of dialysis (with much drawing of blood for tests including the A2 titer (sorry Aarnes)) followed by meetings with the surgeon (this time for sure) and the post-op nurse coordinator. Then a meeting/exam with the nurse-anesthesiology team including a electrocardiogram.
I would be remiss if I didn't write about my support team, the people who make it so easy just to focus on getting better. Interestingly, my team has had a previous trial run: I had a bad car accident about five years ago (one of those mistakes I was talking about earlier) that required an extended hospital stay and so many people came to my rescue.
Of course, Mom is at the head of the list. At 79, she didn't hesitate to jump on a plane and fly out here to be with me both five years ago and now. She cooks and cleans and sits with me through many of the procedures. She meets with the doctors and nurses with me. She'll be here for a total of five weeks. I need to thank Dad too for lending her to me and taking care of himself during this time.
But perhaps the more remarkable story is the support that I receive from some of my colleagues in the Chemistry Department at Virginia Tech. Having been in a department (CU Boulder) that was cutthroat, it has been, and continues to be, an amazing experience to have colleagues who are like family.
I don't want to name names (except for one) for fear of offending or leaving someone out, but would like to tell you about the things that these wonderful people did for me during my accident recovery five years ago and more recently during my hospitalizations.
Diego Troya is like another little brother to me. He is the one who drove me home from Charlottesville after my rutuximab infusion (the first of my treatments to knock down my immune system before the transplant) in March. He was also the person who did the peritoneal dialysis (home) training with me about a year ago (over several days). And five years ago, he cooked for me (vegan enchiladas) and is generally around to help me whenever I need almost anything. We are together so often that some people wonder if we are a couple, but we're not (in case there are any single women reading this blog).
Five years ago, my colleagues took me to doctors appointments, arranged a driving schedule for bringing my Mom to the hospital each day, to bring her home in the evening and to generally support her so that she could support me. They cooked for her and brought her chocolate. Of course, they visited me in the hospital and cooked for me once I got out. Their children drew pictures for me and one would come to my room and read to me. I recall taking many a slow lap around the hospital floor with many of them, a T-stand in tow as I tried to get some exercise. They were incredibly patient with me.
Over the last year or so, they set up a website to coordinate who could drive me to and from dialysis when I got sick and wasn't able to drive myself. Once in a raging snowstorm. It sometimes feels like they had to set up the website so that they wouldn't fight over who was going to help me. You have no idea how that makes me feel. They coordinated to bring me food. If I needed someone to stay overnight, someone was always there.
It isn't easy being sick, but it is a whole lot easier to be sick with such wonderful friends (especially when my family is thousands of miles away). I never, and I mean never, feel like I'm going through this alone and that is a tremendous comfort.
Wednesday, July 17, 2013
Day eight
Dear Friends,
As I walked into the hospital this morning for plasmapheresis, I announced to Mom that I am officially tired of this whole process. It's only a few more days, but I'm ready for it to be over with. The good news is that I think I will be able to have dialysis early on Saturday morning so that driving home to Blacksburg will be feasible.
A bit of technical information: the main indicator of my immune system's readiness to accept Molly's kidney is a test result known as an A2 titer. It is a measure of the reaction of my immune system to her blood type in the form of antibodies. Last November (or whenever she was first tested for a possible match), the titer was 16, a really good number. The immunologist wants it to be 8 or lower before the transplant. Unfortunately, when I got the infection, it soared to 256. So we had to wait. (I was originally scheduled for the transplant on April 10th) By the end of May, it had dropped to 128 on its own (just by my getting well) and the plasmapheresis is supposed to take it the rest of the way. The IVIG is to trick my body into not making more antibodies. The test is tomorrow and assuming it looks good, everything will be on track. Anyway, cross your fingers.
Alan Esker and Candace Wall are supposed to visit this afternoon and Mom and I are having dinner with Dean and Lisa Harman so there will be plenty of distraction today. I am feeling fine, as if nothing is happening at all with the treatments.
There was an interesting article in the NYT the other day about kidney disease (http://well.blogs.nytimes.com/2013/07/15/kidney-disease-an-underestimated-killer/) and the cost. My guess is that this transplant is going to cost about $100K, but that dialysis was costing about $50K/year. So from a financial standpoint, transplant is far preferred. Of course, quality of life issues are huge too.
As I walked into the hospital this morning for plasmapheresis, I announced to Mom that I am officially tired of this whole process. It's only a few more days, but I'm ready for it to be over with. The good news is that I think I will be able to have dialysis early on Saturday morning so that driving home to Blacksburg will be feasible.
 |
| IVIG |
Alan Esker and Candace Wall are supposed to visit this afternoon and Mom and I are having dinner with Dean and Lisa Harman so there will be plenty of distraction today. I am feeling fine, as if nothing is happening at all with the treatments.
There was an interesting article in the NYT the other day about kidney disease (http://well.blogs.nytimes.com/2013/07/15/kidney-disease-an-underestimated-killer/) and the cost. My guess is that this transplant is going to cost about $100K, but that dialysis was costing about $50K/year. So from a financial standpoint, transplant is far preferred. Of course, quality of life issues are huge too.
Tuesday, July 16, 2013
Day seven
Dear Friends,
Dialysis this morning and meetings with surgeons this afternoon. Today, I should have many of my questions answered about what to expect: operating time, recovery time, limitations on activity afterwards, etc. Saw Molly yesterday and she is looking great. It has been in the 90's here recently and humid. The weather in Blacksburg is not so stifling. I'm hoping to get out and hit tennis balls this afternoon. I'm still feeling fine.
Interestingly, all of the lovely emails that I have been receiving have made me think more about the mistakes I've made in my life. I certainly regret some of the choices I've made and the people who have been hurt. I wish I could at least say that I've never made the same mistake twice, but I can't. I have learned from my mistakes and I do believe that we are all the sum of our experiences and actions, both good and bad. I suppose that if one's life is summarized in a ledger, then one can only hope for many more things on the good side. A life well-lived is all one can hope for, not a mistake-free one.
continued...
Just got back from meeting with one of the doctors and the transplant coordinator. Will meet with the surgeon and post-op coordinator on Thursday. Lots of pills to take afterwards and no solid food starting on Tuesday (23rd), but the good news is that they expect to release me from the hospital on Monday morning (29th) and I can go home immediately. So I could be in my own bed by Monday night. Of course, lots of follow up appointments and frequent blood draws, but some of that can be done locally. First thing I'm going to do is have an ice-cold Coke. Haven't been able to drink cola because of the high phosphorous levels.
Dialysis this morning and meetings with surgeons this afternoon. Today, I should have many of my questions answered about what to expect: operating time, recovery time, limitations on activity afterwards, etc. Saw Molly yesterday and she is looking great. It has been in the 90's here recently and humid. The weather in Blacksburg is not so stifling. I'm hoping to get out and hit tennis balls this afternoon. I'm still feeling fine.
Interestingly, all of the lovely emails that I have been receiving have made me think more about the mistakes I've made in my life. I certainly regret some of the choices I've made and the people who have been hurt. I wish I could at least say that I've never made the same mistake twice, but I can't. I have learned from my mistakes and I do believe that we are all the sum of our experiences and actions, both good and bad. I suppose that if one's life is summarized in a ledger, then one can only hope for many more things on the good side. A life well-lived is all one can hope for, not a mistake-free one.
continued...
Just got back from meeting with one of the doctors and the transplant coordinator. Will meet with the surgeon and post-op coordinator on Thursday. Lots of pills to take afterwards and no solid food starting on Tuesday (23rd), but the good news is that they expect to release me from the hospital on Monday morning (29th) and I can go home immediately. So I could be in my own bed by Monday night. Of course, lots of follow up appointments and frequent blood draws, but some of that can be done locally. First thing I'm going to do is have an ice-cold Coke. Haven't been able to drink cola because of the high phosphorous levels.
Monday, July 15, 2013
Day six
Dear Friends,
Today is the third of six plasmapheresis treatments and the third of seven IVIG infusions, so after today, I will be essentially half-way done. Thank you for all of the emails wishing me well and all of the prayers for a good outcome. I feel quite loved. I should also mention that Mom is doing well, though I think she is a little bored. Today, though, she is having lunch with Molly, who is in C'ville for a pre-op meeting.
I'm sure many of you are familiar with the old joke
Patient: Doctor, will I be able to play the piano after the operation?
Doctor: Yes, certainly.
Patient: That's great. Because I couldn't play the piano before.
Also, you've probably heard of fictional stories of people who receive a heart transplant and then fall in love. Well, in that vein, I've been wondering what new passions and abilities I will have from Molly after I receive one of her kidneys.
It turns out that Molly and I are already alike in many ways. She loves the Big Bang Theory, which is my favorite TV show. She also plays the flute, which is something I am studying. She likes baseball (has season tickets to the Salem Red Sox). Her main hobby these days is golf, so maybe I'll become a better golfer. I would have preferred suddenly knowing how to speak a new language, but beggars can't be choosers. :)
PS. First unnecessarily annoying process: every time I have IVIG, I have to "register". This means every other day, I have to answer the same set of questions about where I live, my phone number, my insurance, why I have medicare, etc. Just what do they think will change in two days?
Today is the third of six plasmapheresis treatments and the third of seven IVIG infusions, so after today, I will be essentially half-way done. Thank you for all of the emails wishing me well and all of the prayers for a good outcome. I feel quite loved. I should also mention that Mom is doing well, though I think she is a little bored. Today, though, she is having lunch with Molly, who is in C'ville for a pre-op meeting.
I'm sure many of you are familiar with the old joke
Patient: Doctor, will I be able to play the piano after the operation?
Doctor: Yes, certainly.
Patient: That's great. Because I couldn't play the piano before.
Also, you've probably heard of fictional stories of people who receive a heart transplant and then fall in love. Well, in that vein, I've been wondering what new passions and abilities I will have from Molly after I receive one of her kidneys.
It turns out that Molly and I are already alike in many ways. She loves the Big Bang Theory, which is my favorite TV show. She also plays the flute, which is something I am studying. She likes baseball (has season tickets to the Salem Red Sox). Her main hobby these days is golf, so maybe I'll become a better golfer. I would have preferred suddenly knowing how to speak a new language, but beggars can't be choosers. :)
PS. First unnecessarily annoying process: every time I have IVIG, I have to "register". This means every other day, I have to answer the same set of questions about where I live, my phone number, my insurance, why I have medicare, etc. Just what do they think will change in two days?
Sunday, July 14, 2013
Day five
Dear Friends,
Our relaxing vacation continued today with a morning visit to Montpelier, James Madison's ancestral home. A great tour if you're ever in the neighborhood. The restoration of his house is quite impressive. Whereas Jefferson was the father of the declaration of independence, Madison is credited with being the father of the constitution. Dolley Madison, of course, invented the snack cake. :)
It occurs to me that I haven't been explicitly reporting on my health, though I imagine that you can read between the lines. For the most part, I feel just fine. The only side effects that I have had to deal with are upset stomach and nausea. These have been treated with drugs quite effectively. My appetite is good and I am sleeping well.
Diego visited yesterday and brought some things that we had forgotten in Blacksburg. If I can get an early dialysis appointment next Saturday, we might try to run home and stay over Saturday night. Our plan now is to stay where we are until next Tuesday (about 9 more days) and then move to a regular hotel closer to the hospital.
It occurs to me that I haven't been explicitly reporting on my health, though I imagine that you can read between the lines. For the most part, I feel just fine. The only side effects that I have had to deal with are upset stomach and nausea. These have been treated with drugs quite effectively. My appetite is good and I am sleeping well.
Diego visited yesterday and brought some things that we had forgotten in Blacksburg. If I can get an early dialysis appointment next Saturday, we might try to run home and stay over Saturday night. Our plan now is to stay where we are until next Tuesday (about 9 more days) and then move to a regular hotel closer to the hospital.
Saturday, July 13, 2013
Day four
Dear Friends,
It's a dialysis day. Yesterday's treatments were better, but administrative snafus still slowed everything down. MWF are long days.
I'm sure many of you are wondering about my benefactor, Molly McClintock. I met Molly at the Christmas store, a charity that I have been associated with for a few years. I was introduced to the Christmas store by my flute teacher, Vicki Scarratt, and originally worked in the food department, sorting and bagging canned food. I think Molly (head of eligibility) wanted more men to work on the eligibility team, so she drafted Diego Troya and me. Diego is bilingual, which is useful to her. (Partly why Diego and I decided to volunteer at the Store was to meet women; almost all of the volunteers are women. In fact, that is where we met Carrie Brill)_
So basically, Molly and I work together for about 10 days a year, providing Christmas presents, new clothes and food for underprivileged children and senior and disabled adults in Montgomery county. Traditionally, Diego and I are in charge on the last day that the store is open each year, so I guess she trusts us. Yet, I'm not sure you would say that Molly and I would have been considered good friends before she offered this most amazing gift: for instance, prior to a few weeks ago, she had never been to my house for dinner and as anyone who knows me well knows, all of my friends eat at my house.
One day, about 8 months ago, Diego and I met Molly and her partner, Irene, outside of the Lyric Theater, the local indie movie house in Blacksburg and she kindly asked me how I was. I mentioned that I needed a kidney and she, without hesitating, said, "you can have one of mine." As it turns out, we are not a perfect match (her blood type is A2 and mine is O), but the match is apparently good enough, and the doctors can do amazing things with non-ABO matched donors.
She passed all of the health tests and I am going to be getting her left kidney. I will then have three kidneys, hence the name of the blog.
Coincidentally, we were born only a few days apart (though thousands of miles). She is a semi-retired industrial safety professional and full time philanthropist and she is giving me the most unbelievable gift. I look forward to introducing her to many of you.
It's a dialysis day. Yesterday's treatments were better, but administrative snafus still slowed everything down. MWF are long days.
 |
| Molly and me |
So basically, Molly and I work together for about 10 days a year, providing Christmas presents, new clothes and food for underprivileged children and senior and disabled adults in Montgomery county. Traditionally, Diego and I are in charge on the last day that the store is open each year, so I guess she trusts us. Yet, I'm not sure you would say that Molly and I would have been considered good friends before she offered this most amazing gift: for instance, prior to a few weeks ago, she had never been to my house for dinner and as anyone who knows me well knows, all of my friends eat at my house.
One day, about 8 months ago, Diego and I met Molly and her partner, Irene, outside of the Lyric Theater, the local indie movie house in Blacksburg and she kindly asked me how I was. I mentioned that I needed a kidney and she, without hesitating, said, "you can have one of mine." As it turns out, we are not a perfect match (her blood type is A2 and mine is O), but the match is apparently good enough, and the doctors can do amazing things with non-ABO matched donors.
She passed all of the health tests and I am going to be getting her left kidney. I will then have three kidneys, hence the name of the blog.
Coincidentally, we were born only a few days apart (though thousands of miles). She is a semi-retired industrial safety professional and full time philanthropist and she is giving me the most unbelievable gift. I look forward to introducing her to many of you.
Friday, July 12, 2013
Day three
Dear Friends,
Had a lovely dinner at the Bavarian Chef with Kim (a former VT student and now UVa grad student) and Mom last night. Wicked thunderstorm on the way home.
Some of you may be wondering if hard living and drug and alcohol abuse has led to my predicament of failing kidneys. (Unfortunately?) no. I have a genetic disease called autosomal dominant polycystic kidney disease (ADPKD) that has been slowly turning my kidneys into a huge mass of worthless cysts. There is no cure and no treatment other than a transplant or dialysis. I have known about it for more than 20 years and the disease progresses differently in different people, so failure was always in the back of my mind, but I was hopeful that it was a long ways off.
I have been in the care of a nephrologist for many years, but the first real indicators that I was having problems came two years ago when I tried to donate blood and showed up anemic. Having never been anemic before, it was a shock. The next symptom was unexplained itching.
Anyway, I had surgery for a peritoneal catheter just before my 50th birthday last May and started at-home dialysis. It worked well until December when my body apparently started to reject the plastic tube in my belly. I got really sick and had to be hospitalized in January (rescued by Kate Lucot). 1/3 of the chemistry faculty visited me in the hospital in three days. Once again, I was well cared for by friends. I was switched to hemodialysis (in-center) and have been doing that ever since.
I was originally scheduled for a transplant in April, but in March, I got an infection and that put a stop to everything. I then had to get well and wait for my immune system to calm down.
More later, but I'd better stop now, because I don't want a TL DNR from Diego (too long, did not read :))
Had a lovely dinner at the Bavarian Chef with Kim (a former VT student and now UVa grad student) and Mom last night. Wicked thunderstorm on the way home.
Some of you may be wondering if hard living and drug and alcohol abuse has led to my predicament of failing kidneys. (Unfortunately?) no. I have a genetic disease called autosomal dominant polycystic kidney disease (ADPKD) that has been slowly turning my kidneys into a huge mass of worthless cysts. There is no cure and no treatment other than a transplant or dialysis. I have known about it for more than 20 years and the disease progresses differently in different people, so failure was always in the back of my mind, but I was hopeful that it was a long ways off.
I have been in the care of a nephrologist for many years, but the first real indicators that I was having problems came two years ago when I tried to donate blood and showed up anemic. Having never been anemic before, it was a shock. The next symptom was unexplained itching.
Anyway, I had surgery for a peritoneal catheter just before my 50th birthday last May and started at-home dialysis. It worked well until December when my body apparently started to reject the plastic tube in my belly. I got really sick and had to be hospitalized in January (rescued by Kate Lucot). 1/3 of the chemistry faculty visited me in the hospital in three days. Once again, I was well cared for by friends. I was switched to hemodialysis (in-center) and have been doing that ever since.
I was originally scheduled for a transplant in April, but in March, I got an infection and that put a stop to everything. I then had to get well and wait for my immune system to calm down.
More later, but I'd better stop now, because I don't want a TL DNR from Diego (too long, did not read :))
Thursday, July 11, 2013
Day two
Dear Friends,
I was asked if I would blog about my experience and, well, frankly, I've got nothing better to do right now. I am spending 4-10 hours sitting in a chair or bed for the next two weeks, preparing my immune system for the transplant or doing dialysis. Everyone at UVa hospital seems nice and, perhaps more importantly, competent.
On MWF, I am doing plasmapheresis in the morning. This consists of pulling out blood (sorry Aarnes) and spinning it down in a continuous process to remove plasma. The plasma is apparently where the antibodies reside. Then they give me my blood back with some albumin. This takes a little over two hours. Then in the afternoon, they give me intravenous immunoglobulin to trick my body into not making more antibodies. The latter procedure made me sick to my stomach on the first day and I had to have a drug for that.
On TTS, I have my regular dialysis. Only Sundays off. All of this will continue up to the 25th when the transplant is scheduled. Hopefully, noting will go wrong. Like catching something.
The good news is that during these next two weeks, I don't have to be quarantined, which is nice. Mom and I are staying in an extended stay hotel in a slightly sketchy neighborhood. It is within easy walking distance of grocery shopping, which is good, but they have a permanent armed guard, which is definitely not Blacksburg. More like Oakland, so Mom is right at home.
I really appreciate all of your thoughts and prayers. It occurs to me that I'm going to miss the special attention when this is all over. It could drive a person to develop Munchausen's. But seriously, it feels quite nice to be so loved and cared for. It makes it easier to tolerate the inconvenience.
I was asked if I would blog about my experience and, well, frankly, I've got nothing better to do right now. I am spending 4-10 hours sitting in a chair or bed for the next two weeks, preparing my immune system for the transplant or doing dialysis. Everyone at UVa hospital seems nice and, perhaps more importantly, competent.
On MWF, I am doing plasmapheresis in the morning. This consists of pulling out blood (sorry Aarnes) and spinning it down in a continuous process to remove plasma. The plasma is apparently where the antibodies reside. Then they give me my blood back with some albumin. This takes a little over two hours. Then in the afternoon, they give me intravenous immunoglobulin to trick my body into not making more antibodies. The latter procedure made me sick to my stomach on the first day and I had to have a drug for that.
On TTS, I have my regular dialysis. Only Sundays off. All of this will continue up to the 25th when the transplant is scheduled. Hopefully, noting will go wrong. Like catching something.
The good news is that during these next two weeks, I don't have to be quarantined, which is nice. Mom and I are staying in an extended stay hotel in a slightly sketchy neighborhood. It is within easy walking distance of grocery shopping, which is good, but they have a permanent armed guard, which is definitely not Blacksburg. More like Oakland, so Mom is right at home.
I really appreciate all of your thoughts and prayers. It occurs to me that I'm going to miss the special attention when this is all over. It could drive a person to develop Munchausen's. But seriously, it feels quite nice to be so loved and cared for. It makes it easier to tolerate the inconvenience.
Subscribe to:
Comments (Atom)