The last dialysis of the week, so it's time to put my new strategy into place one more time. I've had my breakfast, so now it's time to write and keep my hands off the bad food!
Today was a pretty routine dialysis day today. No problems and no blood spilled. I read an interesting article about five kidney transplants in Des Moines, IA. Here's the link to the article.
Five Transplants in Des Moines
I turned in four days of food logging into Jan this morning, so she'll have that to review as we track my progress. I'm excited about getting this excess weight off of me, especially since I know this is the year I get transplanted.
Saturday, January 12, 2013
Thursday, January 10, 2013
New Strategies
With the new year comes a renewed attempt to get my weight down and get healthy. In talking with Jan, the DCI dietician, I've put together some goals and some new strategies for getting my weight down.
I'm about 20-25 pounds overweight, but sometimes these amounts can be the hardest to take off. The first strategy change is how I handle the times on my own. It's not often, but it seems like when I'm by myself, I eat like I'm going to the chair!
The time after dialysis is also a danger time. Since I don't eat breakfast before dialysis, I'm tempted to eat breakfast and lunch in one setting. This week I limited my breakfast to breakfast. Later in the day I had half of a meal, something bigger than a snack, but smaller than a full meal.
The new strategy says that once I'm done eating my breakfast on dialysis days, I need to move on to something else. Today that something else is writing.
So, once this post is finished, it will be time to get my half meal ready and get ready for work.
I'm about 20-25 pounds overweight, but sometimes these amounts can be the hardest to take off. The first strategy change is how I handle the times on my own. It's not often, but it seems like when I'm by myself, I eat like I'm going to the chair!
The time after dialysis is also a danger time. Since I don't eat breakfast before dialysis, I'm tempted to eat breakfast and lunch in one setting. This week I limited my breakfast to breakfast. Later in the day I had half of a meal, something bigger than a snack, but smaller than a full meal.
The new strategy says that once I'm done eating my breakfast on dialysis days, I need to move on to something else. Today that something else is writing.
So, once this post is finished, it will be time to get my half meal ready and get ready for work.
Tuesday, January 1, 2013
Happy New Year!
With the new year comes the reset button we all push on December 31. Maybe we only need to make a few changes, maybe we view this as an opportunity to make sweeping changes, and maybe we just continue wishing for a kidney.
For me, it's the latter, although there are some other little changes I need to make in 2013. One of those little changes is to resume regular writing on this blog. I don't know that there was reason for not writing. It certainly wasn't for lack of things to write about!
Anyone who has, or is, going through dialysis knows that each day at the clinic is interesting. In addition to the daily dose of dialysis, I got great news about my CLL. It is in remission, gone, cleared out, however you want to describe it. It felt great to get that pronouncement, especially since six years ago I was sure the CLL diagnosis meant an early end to my plans.
Good as being in remission felt, I couldn't celebrate the news, knowing that I would be headed back to dialysis the next day. That's a flaw of mine that needs improving in 2013. Being cancer-free is a tremendous feeling! I'm grateful for Dr. Tarantolo and the awesome nurses at the Midwest Cancer Center.
So, for the most part things are going well. Jeannie continues to make me feel like the luckiest guy in the world, and despite the grind of dialysis, she keeps a positive attitude about finding a donor.
On the donor front, there is a candidate who has gone through the first set of blood tests to determine if we are a potential match. Based on the first set of tests, we know we match five of eight markers. That's a good start.
The wheels fell of our wagon a bit once my donor shared their decision to get tested further with family members. The reception was less than positive and supportive. I understand their concern. Giving a kidney to someone that is not family is probably hard for people to get their head around. It's a tremendous act of kindness, but good feelings aside, it is still something that is hard for people to understand and accept.
Just the same, we remain confident that wagon wheels will return to roll us through to a transplant in 2013.
Armed with the optimism that a kidney is just around the corner, I'm excited about all the great things that will come our way in 2013! I hope everyone gets what they want in the new year too.
For me, it's the latter, although there are some other little changes I need to make in 2013. One of those little changes is to resume regular writing on this blog. I don't know that there was reason for not writing. It certainly wasn't for lack of things to write about!
Anyone who has, or is, going through dialysis knows that each day at the clinic is interesting. In addition to the daily dose of dialysis, I got great news about my CLL. It is in remission, gone, cleared out, however you want to describe it. It felt great to get that pronouncement, especially since six years ago I was sure the CLL diagnosis meant an early end to my plans.
Good as being in remission felt, I couldn't celebrate the news, knowing that I would be headed back to dialysis the next day. That's a flaw of mine that needs improving in 2013. Being cancer-free is a tremendous feeling! I'm grateful for Dr. Tarantolo and the awesome nurses at the Midwest Cancer Center.
So, for the most part things are going well. Jeannie continues to make me feel like the luckiest guy in the world, and despite the grind of dialysis, she keeps a positive attitude about finding a donor.
On the donor front, there is a candidate who has gone through the first set of blood tests to determine if we are a potential match. Based on the first set of tests, we know we match five of eight markers. That's a good start.
The wheels fell of our wagon a bit once my donor shared their decision to get tested further with family members. The reception was less than positive and supportive. I understand their concern. Giving a kidney to someone that is not family is probably hard for people to get their head around. It's a tremendous act of kindness, but good feelings aside, it is still something that is hard for people to understand and accept.
Just the same, we remain confident that wagon wheels will return to roll us through to a transplant in 2013.
Armed with the optimism that a kidney is just around the corner, I'm excited about all the great things that will come our way in 2013! I hope everyone gets what they want in the new year too.
Friday, February 3, 2012
Traveling Man
Franklin, Indiana
Our first long trip out of town since dialysis takes us to Franklin, Indiana, about 20 miles south of Indianapolis. Jeannie's son lives here, so we're staying with him. We stopped in the Quad Cities and picked up Jeannie's other son Matt and his son Jacob. We had a full car, but it was a fun ride from the QC to Franklin.
We're going to check out Super Bowl Village today and tomorrow, taking part in the NFL Experience. This is as close as I'm probably ever going to get to a Super Bow, so I'm looking forward to checking it all out.
Traveling like this meant we had to make arrangements for dialysis. This has always been a scary proposition for me, but it came down to a choice of who or what was going to determine how I live my life. Dialysis has to be a part of the consideration when traveling, but I guess it was time to stop leeting it be the ball and chain that it sometimes feels like.
The decision to travel was made easier since DCI has a clinic in Indianapolis. If I have to go somewhere else for dialysis, I guess I'm glad that it's another DCI. It should be an easier transition.
The clinic here is a 27-chair facility. That makes it similar in size to the one I go to in Omaha. I just checked in with them, and they have me setup for a 4:15 start on Saturday. They may be the same size, but to have a 4pm shift on a Saturday tells me there are a lot of dialysis patients in the area.
Now that I'm working on losing weight, traveling also presents a challenge. Making sure I continue to eat right while we're away from home is always tough. Paul has weight equipment here, so I should be able to do some exercise this weekend, so as long as I can keep my eating in check, traveling shouldn't be a big problem.
So far, I'm down nine pounds in my first three weeks of healthier eating. That works for me!
Once I'm settled into my dialysis chair tomorrow, I will post again.
Our first long trip out of town since dialysis takes us to Franklin, Indiana, about 20 miles south of Indianapolis. Jeannie's son lives here, so we're staying with him. We stopped in the Quad Cities and picked up Jeannie's other son Matt and his son Jacob. We had a full car, but it was a fun ride from the QC to Franklin.
We're going to check out Super Bowl Village today and tomorrow, taking part in the NFL Experience. This is as close as I'm probably ever going to get to a Super Bow, so I'm looking forward to checking it all out.
Traveling like this meant we had to make arrangements for dialysis. This has always been a scary proposition for me, but it came down to a choice of who or what was going to determine how I live my life. Dialysis has to be a part of the consideration when traveling, but I guess it was time to stop leeting it be the ball and chain that it sometimes feels like.
The decision to travel was made easier since DCI has a clinic in Indianapolis. If I have to go somewhere else for dialysis, I guess I'm glad that it's another DCI. It should be an easier transition.
The clinic here is a 27-chair facility. That makes it similar in size to the one I go to in Omaha. I just checked in with them, and they have me setup for a 4:15 start on Saturday. They may be the same size, but to have a 4pm shift on a Saturday tells me there are a lot of dialysis patients in the area.
Now that I'm working on losing weight, traveling also presents a challenge. Making sure I continue to eat right while we're away from home is always tough. Paul has weight equipment here, so I should be able to do some exercise this weekend, so as long as I can keep my eating in check, traveling shouldn't be a big problem.
So far, I'm down nine pounds in my first three weeks of healthier eating. That works for me!
Once I'm settled into my dialysis chair tomorrow, I will post again.
Tuesday, January 31, 2012
Losing Weight with Kidney Diease
One of the things Dr. Frock, the nurses, and the dietician told me in my first few months of dialysis was not to try and lose weight. They wanted me to eat well, which I figured would help me weather the three days of dialysis.
Since I'm nothing if not a good patient, I ate well. Every now and again I would do some exercise, but it seemed like every time I got started working out, my fistula would act up,or something out of the blue would flare up. Regular readers here will recall my bout with the UTI. I was on a pretty good workout roll at that time, but the UTI derailed me.
Now, here I am with about 30 pounds of unnecessary weight, ready to get rid of it, and still maintain the kind of health I need to withstand dialysis. I've been working out for the past three weeks. Admittedly, I haven't got myself into a great workout rhythm yet, but I have lost 8.5 pounds, so I'm not doing too bad.
The challenge with losing weight with kidney disease is that food that you know promotes weight loss is a no-no on a renal diet. Wheat bread and wheat pasta are not kidney friendly, too much dairy is a bad thing, and you still have to be reasonable when it comes to hydration. Factor in the three days of dialysis, and I think it's clear that this isn't going to be the easiest thing I've ever done.
I've been down the workout/losing weight path before, so I have an idea of what I need to do. For exercise, I've been following the workout routines that the trainer I worked with a couple years ago gave me to follow. I knew it would pay off to keep those workout sheets!
For diet, I've been keeping one eye on the renal restrictions and adding in some food from Chris Powell's latest book, along with his suggestions for mixing up high carb/low carb days.
I also used Dr. Rob Huizinga's book, "Where Did All the Fat Go?" as a blueprint for the kind of weight loss I wanted to achieve. Dr. H is the main medical guy on the Biggest Loser, and he takes the success he's had with at home contestants and put together a nice road map to follow.
Tomorrow is the first lab work that I've gone through since starting my weight loss program. I"m anxious to see what kind of impact my changes have had. Once I have the results, I'll post them alongside my previous month's numbers.
Since I'm nothing if not a good patient, I ate well. Every now and again I would do some exercise, but it seemed like every time I got started working out, my fistula would act up,or something out of the blue would flare up. Regular readers here will recall my bout with the UTI. I was on a pretty good workout roll at that time, but the UTI derailed me.
Now, here I am with about 30 pounds of unnecessary weight, ready to get rid of it, and still maintain the kind of health I need to withstand dialysis. I've been working out for the past three weeks. Admittedly, I haven't got myself into a great workout rhythm yet, but I have lost 8.5 pounds, so I'm not doing too bad.
The challenge with losing weight with kidney disease is that food that you know promotes weight loss is a no-no on a renal diet. Wheat bread and wheat pasta are not kidney friendly, too much dairy is a bad thing, and you still have to be reasonable when it comes to hydration. Factor in the three days of dialysis, and I think it's clear that this isn't going to be the easiest thing I've ever done.
I've been down the workout/losing weight path before, so I have an idea of what I need to do. For exercise, I've been following the workout routines that the trainer I worked with a couple years ago gave me to follow. I knew it would pay off to keep those workout sheets!
For diet, I've been keeping one eye on the renal restrictions and adding in some food from Chris Powell's latest book, along with his suggestions for mixing up high carb/low carb days.
I also used Dr. Rob Huizinga's book, "Where Did All the Fat Go?" as a blueprint for the kind of weight loss I wanted to achieve. Dr. H is the main medical guy on the Biggest Loser, and he takes the success he's had with at home contestants and put together a nice road map to follow.
Tomorrow is the first lab work that I've gone through since starting my weight loss program. I"m anxious to see what kind of impact my changes have had. Once I have the results, I'll post them alongside my previous month's numbers.
Saturday, January 21, 2012
The Care Conference
One of the things that happens at DCI, and maybe it happens at all clinics, is the Care Conference. This is a brief meeting of the dialysis patient and the social worker, dietician, nurse manager, and in my case, Dr. Frock.
The first meeting happened pretty early on in my dialysis experience. I think it happened within the first month, and then again at six months, and then there was yesterday's conference. There isn't a lot of new ground broken at these meetings, since I see Dr. Frock once a month, and I have regular conversations with the others. It does provide a forum for all the parties to discuss my case at the same time. Since Jeannie only gets her information from me, the conference is a chance for her to hear from everyone directly, which I think is good for understanding.
I had two things I wanted to talk about with the group yesterday. The first item was the length of each dialysis session. Since going to the fistula for my dialysis, I've tacked on an extra 10-15 minutes to the time I'm at the clinic. The extra time is due to waiting for my arm to stop bleeding after the needles are taken out. I usually clot up pretty fast, but by the time someone comes and tapes me down, a nurse listens to me, and I get my blood pressure checked, I'm the last one out the door.
Since I go to work after dialysis, it's important for me to have enough time to get home, eat, and shower before heading in to the office. I've talked with Dr. Frock about cutting 15 minutes off my time, which would at least put me back to the time I had when we were using the catheters. Dr. Frock's answer to this was simply, no. He is not a fan of cutting back on time. He believes his patients should have 12 hours a week of dialysis, and that's it.
So, yesterday I wanted to talk about this with everyone in the room. My blood work is sensational and the number that shows how clean my blood is getting, the KT/V, is also above normal. I thought I had a good case.
Dr. Frock brought it up right away. I told him that I needed at least 15 minutes and maybe even a half hour to be able to get into work to handle my responsibilities there. While I really wanted to sit in the dialysis chair for less time, the bottom line was being able to get out of the clinic at a decent time to allow me to eat, get ready for work, and get to work by noon or so.
To show I was interested in other alternatives, I also mentioned I would be willing to come in earlier, as long as it didn't put stress on the staff and the current on/off schedules of the other patients. It turns out that Janet, the nurse manager, was going to implement an earlier starting time of 5:45 for the first patients. She offered me the 5:45 start for next Tuesday, which should give me an extra 30 minutes. I'd rather have less dialysis time, but 30 minutes is 30 minutes.
My other question was about my Epogen shot, which started up again last Tuesday. I stopped getting the weekly shot because my hemoglobin had gone up to around 12, which is above the range where they issue the shot. Sometime in between the January labs and the follow-up blood draw that happened around the 13th, my hemoglobin dropped, causing the resumption of the Epogen shot.
I learned all of this yesterday. When I needed to hear it was the day I got the shot. Instead, all I heard was that's the way the computer shoots out the instructions, so that's why I got the shot. I don't do well with explanations like that, so I asked Jan, the dietician about it. She showed me how to calculate my hemoglobin, so I would be able to tell from my hematocrit number what was happening.
Janet apologized for that explanation, gave me a more in depth explanation, and we moved on. It wasn't a big deal, but I do like to know why things are happening to me, and blaming a computer for all of that isn't very comforting. I like facts, especially when it comes to my care.
After getting through my two questions, we talked about my transplant status, and then the dietician and social worker added their comments. Everyone was real positive about my outlook and my health. I think they are all rooting for me to get a kidney, so I can get on with my life.
And that's the care conference. Pretty quick, but it's a nice way for us all to sit down and talk about my case.
The first meeting happened pretty early on in my dialysis experience. I think it happened within the first month, and then again at six months, and then there was yesterday's conference. There isn't a lot of new ground broken at these meetings, since I see Dr. Frock once a month, and I have regular conversations with the others. It does provide a forum for all the parties to discuss my case at the same time. Since Jeannie only gets her information from me, the conference is a chance for her to hear from everyone directly, which I think is good for understanding.
I had two things I wanted to talk about with the group yesterday. The first item was the length of each dialysis session. Since going to the fistula for my dialysis, I've tacked on an extra 10-15 minutes to the time I'm at the clinic. The extra time is due to waiting for my arm to stop bleeding after the needles are taken out. I usually clot up pretty fast, but by the time someone comes and tapes me down, a nurse listens to me, and I get my blood pressure checked, I'm the last one out the door.
Since I go to work after dialysis, it's important for me to have enough time to get home, eat, and shower before heading in to the office. I've talked with Dr. Frock about cutting 15 minutes off my time, which would at least put me back to the time I had when we were using the catheters. Dr. Frock's answer to this was simply, no. He is not a fan of cutting back on time. He believes his patients should have 12 hours a week of dialysis, and that's it.
So, yesterday I wanted to talk about this with everyone in the room. My blood work is sensational and the number that shows how clean my blood is getting, the KT/V, is also above normal. I thought I had a good case.
Dr. Frock brought it up right away. I told him that I needed at least 15 minutes and maybe even a half hour to be able to get into work to handle my responsibilities there. While I really wanted to sit in the dialysis chair for less time, the bottom line was being able to get out of the clinic at a decent time to allow me to eat, get ready for work, and get to work by noon or so.
To show I was interested in other alternatives, I also mentioned I would be willing to come in earlier, as long as it didn't put stress on the staff and the current on/off schedules of the other patients. It turns out that Janet, the nurse manager, was going to implement an earlier starting time of 5:45 for the first patients. She offered me the 5:45 start for next Tuesday, which should give me an extra 30 minutes. I'd rather have less dialysis time, but 30 minutes is 30 minutes.
My other question was about my Epogen shot, which started up again last Tuesday. I stopped getting the weekly shot because my hemoglobin had gone up to around 12, which is above the range where they issue the shot. Sometime in between the January labs and the follow-up blood draw that happened around the 13th, my hemoglobin dropped, causing the resumption of the Epogen shot.
I learned all of this yesterday. When I needed to hear it was the day I got the shot. Instead, all I heard was that's the way the computer shoots out the instructions, so that's why I got the shot. I don't do well with explanations like that, so I asked Jan, the dietician about it. She showed me how to calculate my hemoglobin, so I would be able to tell from my hematocrit number what was happening.
Janet apologized for that explanation, gave me a more in depth explanation, and we moved on. It wasn't a big deal, but I do like to know why things are happening to me, and blaming a computer for all of that isn't very comforting. I like facts, especially when it comes to my care.
After getting through my two questions, we talked about my transplant status, and then the dietician and social worker added their comments. Everyone was real positive about my outlook and my health. I think they are all rooting for me to get a kidney, so I can get on with my life.
And that's the care conference. Pretty quick, but it's a nice way for us all to sit down and talk about my case.
Sunday, December 25, 2011
And So This is Christmas
One of the things that I keep coming back to, especially during the holidays, is the importance of gratitude. Over the last few days, I've been aware of how I've been feeling lately, and I realized that it has been a very long time since I have felt this good.
I've noticed that I'm not as cold as I had been. It seemed like it wouldn't have to be very cold inside or out to get me to put on a long sleeved shirt. While at work the other day, I actually rolled up my sleeves, which I haven't done in a couple of years.
I also noticed that I'm not falling asleep at night after we eat dinner. This is something that has been a problem for me for several years. Sometimes, it's simply a matter of not getting enough quality sleep, but even when that wasn't an issue, I nod off without any warning. Lately, however, I'm staying up without falling asleep after dinner. It feels good to be more productive during the evening, and even if I don't actually do anything, it's nice to be there for Jeannie and not dozing off all night.
Both of these changes coincide with a recent up tick in my hemoglobin. Since dialysis began, my hemoglobin has been somewhere between 10-11. Good enough for dialysis, but I'm still kind of sluggish at that level. Since the middle of November or so, my hemoglobin has been hovering around 13.5, which is dynamite!
There's been only one downside to this, and I'm not sure yet that I can connect the two things, but I"m getting black and blue marks easier. We noticed the other day that I had black and blue marks in places that don't typically bruise. For example, I've got two bruise marks on my stomach. My stomach? It's the craziest thing. They just appear out of nowhere.
I mentioned this to a nurse at the dialysis clinic the other day, and she told me that it's probably time to drop the dosage of heparin I get during each session. Like I said, I don't know what, if any, relationship there is between the heparin, the increased hemoglobin, and the black and blue marks, but something's going on. And, it's nice to know that for now, the things that are going on are good things!
So, Merry Christmas to everyone out there in the blogosphere. Be sure to take some time to count your blessings today and everyday,
I've noticed that I'm not as cold as I had been. It seemed like it wouldn't have to be very cold inside or out to get me to put on a long sleeved shirt. While at work the other day, I actually rolled up my sleeves, which I haven't done in a couple of years.
I also noticed that I'm not falling asleep at night after we eat dinner. This is something that has been a problem for me for several years. Sometimes, it's simply a matter of not getting enough quality sleep, but even when that wasn't an issue, I nod off without any warning. Lately, however, I'm staying up without falling asleep after dinner. It feels good to be more productive during the evening, and even if I don't actually do anything, it's nice to be there for Jeannie and not dozing off all night.
Both of these changes coincide with a recent up tick in my hemoglobin. Since dialysis began, my hemoglobin has been somewhere between 10-11. Good enough for dialysis, but I'm still kind of sluggish at that level. Since the middle of November or so, my hemoglobin has been hovering around 13.5, which is dynamite!
There's been only one downside to this, and I'm not sure yet that I can connect the two things, but I"m getting black and blue marks easier. We noticed the other day that I had black and blue marks in places that don't typically bruise. For example, I've got two bruise marks on my stomach. My stomach? It's the craziest thing. They just appear out of nowhere.
I mentioned this to a nurse at the dialysis clinic the other day, and she told me that it's probably time to drop the dosage of heparin I get during each session. Like I said, I don't know what, if any, relationship there is between the heparin, the increased hemoglobin, and the black and blue marks, but something's going on. And, it's nice to know that for now, the things that are going on are good things!
So, Merry Christmas to everyone out there in the blogosphere. Be sure to take some time to count your blessings today and everyday,
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