Controlling my weight with diet changes worked good for a time. It just wasn't enough, and even though I had dropped quite a bit of weight, I wouldn't have said I was healthy. As I mentioned in the last post, we had two guys from Progressive Fitness come in and talk to us about doing training at our office. In that moment, I decided this was exactly what I needed to finish what I had started.
I met with Matt on their first visit to our offices. We talked about the fitness goals I had, and I think I expressed myself pretty well. I knew what I wanted in terms of a goal weight, and I knew generally that I wanted to feel healthier, which I know is what everyone says,but I had an idea in my head of what healthy was.
So armed with my goals, we setup a plan where I would workout with Matt once a week and then I would spend the other 4-5 days of the week working out on my own. Matt told me later that this was not typically how they did things, but I convinced him that I was motivated to do the work on my own. All I needed was guidance on the best exercises to do for the goals I set for myself. And, I needed to be accountable to someone. This was perfect for me.
Matt turned out to be a great trainer for me. He motivated me to keep going and he wasn't afraid to push me to work harder when he was with me each week. He had a plan for me, and we followed it. He started on developing my core strength first, which got me to be better at balancing myself for the off-balance stuff we did every week. As my core strength came together, we did more muscle/strength training. All the while, mixing up the exercises so my body was kept off guard. THis was critical to the success we had.
When the dust and sweat settled, I had lost close to 40 pounds during the time we trained together. I didn't drop the weight in Biggest Loser numbers, but I had a steady 1-2 pound loss each week. I had some moments where I would plateau or maybe not get in all the workouts I needed for the week, but generally speaking, it was easy to lose the weight and get stronger.
Easy sounds strange, and I feel a little odd using that word to describe what it took to lose the weight and the inches off my body. Going through the workouts wasn't always easy. Matt pushed me as my body got into the routine of working out. I started running about halfway through our time together. That was something I didn't know I could do without hurting my knees, but it turned out to be something I really enjoy.
At some point I want to be able to do for others what Matt did for me. I would love to do personal training. The kidney issue has held me back some on this goal, but I think it's something I can get done. And, it's something I think I would be good at.
During the treatments for the CLL I wasn't able to workout like I had become accustomed to. Once the treatments were finished, I got back into the routine again. Now with dialysis three days a week, I've had to modify my workout schedule again, but I've got a routine that works for me. I'm back to running again, and I'm getting ready to run my third Bix, a 7-mile race held in the Quad Cities. I've got almost two months to get ready, and I'm already further along in my preparation than I was a year ago at this time.
It never occurred to me that CLL and kidney disease was going to stop me from exercising. I've made some modifications, but I'm going to keep pushing. I"m sure the exercise has contributed to how well I've been able to weather the treatments and the dialysis.
Tuesday, May 31, 2011
Saturday, May 28, 2011
Choices
Through all the things that have happened since being first diagnosed with CLL and then learning that my kidneys were failing, I've been fortunate to have made some good choices. I say fortunate, because I've made plenty of bad choices in my life. For some reason, these problems have helped me finally stop the cycle of bad choices. For that, I will always be grateful for these challenges.
The big choice I made after the CLL diagnosis was that I need to drop some weight. Some probably isn't accurate. A lot of weight would probably be more accurate.
A good chunk of my bad choices have centered around food. To this day I still make some bad choices when it comes to food. It's a daily struggle.
A few years before the CLL diagnosis, I tried making better food choices. I joined Jenny Craig, which I will always be thankful for. A co-worker had been going to Jenny Craig, and the transformation his body was going through was nothing short of amazing. I knew this was something I could do too.
My Jenny Craig experience was fantastic. I had a great consultant named Lisa, and she was just what I needed at the time. Let's be honest, Jenny Craig is a business, and like all businesses, the goal is to make money. I'm good with that. Lisa, didn't look at me with dollar signs in her eyes. Hey, it was pretty clear I had an eating problem, and my starting weight of 276 pounds wasn't going to win me any awards for good eating habits.
Instead, I was treated like the person I was. Someone wrestling with their weight and in serious need of some help controlling the portions of food I consumed on a daily basis. Jenny Craig taught me what I needed to learn about portions and along the way, in our weekly conversations, Lisa would quiz me on my eating habits. I learned quite a bit about the things that caused me to dive head first into a bag of potato chips, instead of just eating one serving.
I didn't exercise much while I was on Jenny Craig. That was a mistake, but not one that kept me from dropping the weight I wanted to lose. It took some time, but I eventually got my weight down to a more reasonable 200 pounds. I felt great, and I thought I could take what I learned and live a healthier life.
The Jenny Craig plan has you eating their food for every meal. I bought some fruit and veggies, but the main meals and snacks consisted of Jenny Craig food. As I progressed, Lisa tapered me off the Jenny Craig food. This approach gave me a chance to re-acquaint myself with buying groceries and relying on what I had learned about portion control. At first, I did pretty good, but since I wasn't really exercising too much, I hit a wall and stopped losing.
While it looked like I had my weight loss under control, other parts of my life were not doing so well. I got myself into some financial hot water and had to cut out some expenses. Jenny Craig had to stop, and since I was close to where I wanted to be, I didn't think this would be terrible. After all, even though I wasn't losing weight, I wasn't putting weight on.
Unfortunately, it didn't take too long before my weight started creeping up. The stress happening in the other parts of my life was the excuse I was using, but it was clear that when faced with food choices, I reverted back to some of my old habits. Stress may have triggered some of these choices, but they were still my choices.
Once I got the other areas of my life under control, I knew I needed to take another shot at weight loss. I had put about 25 pounds of my Jenny Craig weight loss back on. I couldn't go back to Jenny Craig. I was embarrassed, and honestly, it wasn't going to be in my budget. I needed something that was less expensive, but would keep me accountable. Once again, fate and timing jumped in and took control.
Some people at work were interested in getting something started with Weight Watchers. I decided to join up, and I was on my way again to losing weight.
I've had people ask me which program is better between these two weight loss systems. Truthfully, both will help a person get it done. I was able to lose weight just fine following each group's philosophies. You have to buy Jenny Craig's food to really get the benefits of what they are doing. There's no question, that can be a big expense. But, with that expense comes the accountability of meeting privately with a consultant every week. I liked the privacy aspect. Lisa held me accountable, but my struggles were kept between us. When I had my victories, she took pictures of my progress and posted them on the wall along with the other local success stories.
With Weight Watchers, we learned how to manage our food intake through the use of points. I was able to eat "regular" food, and I learned how to convert food without a point value into the Weight Watcher system. By this part of my journey, I wasn't as self-conscious about sharing with a group. These were people I knew, and some had seen the progress I made with Jenny Craig.
So, I lost some more weight, but eventually our group fizzled out and I was back on my own with this whole weight loss thing. I was doing okay this time around. Sure I gained a pound or two sometimes, and then I would lose those pounds, but I wasn't packing on the weight.
When I was diagnosed with CLL, I was doing okay at keeping my weight in check. Not great, mind you, but I was exercising more this time, so it was easier to keep the weight at bay. When Jeannie and I met, I was still doing pretty well, but our early dates involved a lot of eating out. Plus, she is a sensational cook. Those two thing combined to help some extra pounds find their way on to my body.
And, just as it happened with Weight Watchers, work intervened again into my life by inviting a company called Progressive Fitness in to talk with us about our weight loss goals and show us how exercise was the critical component of this whole weight loss thing. I was hooked. I was back up to around 230 pounds, and I didn't want to weigh anymore. I signed up to have them help me.
I'll share that experience in the next post.
The big choice I made after the CLL diagnosis was that I need to drop some weight. Some probably isn't accurate. A lot of weight would probably be more accurate.
A good chunk of my bad choices have centered around food. To this day I still make some bad choices when it comes to food. It's a daily struggle.
A few years before the CLL diagnosis, I tried making better food choices. I joined Jenny Craig, which I will always be thankful for. A co-worker had been going to Jenny Craig, and the transformation his body was going through was nothing short of amazing. I knew this was something I could do too.
My Jenny Craig experience was fantastic. I had a great consultant named Lisa, and she was just what I needed at the time. Let's be honest, Jenny Craig is a business, and like all businesses, the goal is to make money. I'm good with that. Lisa, didn't look at me with dollar signs in her eyes. Hey, it was pretty clear I had an eating problem, and my starting weight of 276 pounds wasn't going to win me any awards for good eating habits.
Instead, I was treated like the person I was. Someone wrestling with their weight and in serious need of some help controlling the portions of food I consumed on a daily basis. Jenny Craig taught me what I needed to learn about portions and along the way, in our weekly conversations, Lisa would quiz me on my eating habits. I learned quite a bit about the things that caused me to dive head first into a bag of potato chips, instead of just eating one serving.
I didn't exercise much while I was on Jenny Craig. That was a mistake, but not one that kept me from dropping the weight I wanted to lose. It took some time, but I eventually got my weight down to a more reasonable 200 pounds. I felt great, and I thought I could take what I learned and live a healthier life.
The Jenny Craig plan has you eating their food for every meal. I bought some fruit and veggies, but the main meals and snacks consisted of Jenny Craig food. As I progressed, Lisa tapered me off the Jenny Craig food. This approach gave me a chance to re-acquaint myself with buying groceries and relying on what I had learned about portion control. At first, I did pretty good, but since I wasn't really exercising too much, I hit a wall and stopped losing.
While it looked like I had my weight loss under control, other parts of my life were not doing so well. I got myself into some financial hot water and had to cut out some expenses. Jenny Craig had to stop, and since I was close to where I wanted to be, I didn't think this would be terrible. After all, even though I wasn't losing weight, I wasn't putting weight on.
Unfortunately, it didn't take too long before my weight started creeping up. The stress happening in the other parts of my life was the excuse I was using, but it was clear that when faced with food choices, I reverted back to some of my old habits. Stress may have triggered some of these choices, but they were still my choices.
Once I got the other areas of my life under control, I knew I needed to take another shot at weight loss. I had put about 25 pounds of my Jenny Craig weight loss back on. I couldn't go back to Jenny Craig. I was embarrassed, and honestly, it wasn't going to be in my budget. I needed something that was less expensive, but would keep me accountable. Once again, fate and timing jumped in and took control.
Some people at work were interested in getting something started with Weight Watchers. I decided to join up, and I was on my way again to losing weight.
I've had people ask me which program is better between these two weight loss systems. Truthfully, both will help a person get it done. I was able to lose weight just fine following each group's philosophies. You have to buy Jenny Craig's food to really get the benefits of what they are doing. There's no question, that can be a big expense. But, with that expense comes the accountability of meeting privately with a consultant every week. I liked the privacy aspect. Lisa held me accountable, but my struggles were kept between us. When I had my victories, she took pictures of my progress and posted them on the wall along with the other local success stories.
With Weight Watchers, we learned how to manage our food intake through the use of points. I was able to eat "regular" food, and I learned how to convert food without a point value into the Weight Watcher system. By this part of my journey, I wasn't as self-conscious about sharing with a group. These were people I knew, and some had seen the progress I made with Jenny Craig.
So, I lost some more weight, but eventually our group fizzled out and I was back on my own with this whole weight loss thing. I was doing okay this time around. Sure I gained a pound or two sometimes, and then I would lose those pounds, but I wasn't packing on the weight.
When I was diagnosed with CLL, I was doing okay at keeping my weight in check. Not great, mind you, but I was exercising more this time, so it was easier to keep the weight at bay. When Jeannie and I met, I was still doing pretty well, but our early dates involved a lot of eating out. Plus, she is a sensational cook. Those two thing combined to help some extra pounds find their way on to my body.
And, just as it happened with Weight Watchers, work intervened again into my life by inviting a company called Progressive Fitness in to talk with us about our weight loss goals and show us how exercise was the critical component of this whole weight loss thing. I was hooked. I was back up to around 230 pounds, and I didn't want to weigh anymore. I signed up to have them help me.
I'll share that experience in the next post.
Thursday, May 26, 2011
Recalibrated
I've had time to let go of being angry about the fistula infiltration. I was supposed to go in this afternoon and see Dr. Feldhaus, the surgeon who placed the fistula back in December, but he had a couple emergency surgeries which caused him to cancel our appointment. We're rescheduled for next Thursday afternoon.
I'm anxious to see him, because I'd like his take on my fistula and to determine if it needs to be opened up. While I'm with him I may ask him to draw a map on my arm, so the staff at the dialysis clinic can see where to stick me! I swear I wouldn't wash my arm for a week if he would do that.
So, while my catheter gets a stay from being yanked out, I'm focusing on some other upcoming appointments. I start pre-transplant evaluations next Wednesday. I'm pretty stoked about this.
Dr. Tarantolo has been a great advocate for me, calling the head of the transplant department on my behalf and giving him the lowdown on my leukemia. Even though my leukemia is in remission, there's a worry that a transplant will cause the disease to manifest again. It's possible, but Dr. Tarantolo, thinks the odds are very slim, and in the meantime, the transplant will increase my quality of life for many years. The good outweighs the potential problems in this case.
The evaluation process will involve three days of outpatient testing and consultations with the transplant team. I'll be poked, stress-tested, interviewed by a psychiatrist, and filled with so much knowledge that my head will probably explode. I can't wait.
I don't know why the thought of going through the transplant doesn't scare me. It would be the biggest surgery I've ever undergone, but then, I've never had any real surgery experience. Maybe once this is over I'll think differently, but for now I'm comfortable with the coming attractions. Even though dialysis is not a hardship and we've made the adjustments, it would be nice to get back to a life where three trips a week to dialysis wasn't part of my lifestyle.
In between evaluation sessions, I'll be getting a PET scan and another maintenance treatment, so neither ailment will be lacking for attention next month.
With my attitude re-calibrated back to its positive state, I'm ready to experience the evaluation process.
I'm anxious to see him, because I'd like his take on my fistula and to determine if it needs to be opened up. While I'm with him I may ask him to draw a map on my arm, so the staff at the dialysis clinic can see where to stick me! I swear I wouldn't wash my arm for a week if he would do that.
So, while my catheter gets a stay from being yanked out, I'm focusing on some other upcoming appointments. I start pre-transplant evaluations next Wednesday. I'm pretty stoked about this.
Dr. Tarantolo has been a great advocate for me, calling the head of the transplant department on my behalf and giving him the lowdown on my leukemia. Even though my leukemia is in remission, there's a worry that a transplant will cause the disease to manifest again. It's possible, but Dr. Tarantolo, thinks the odds are very slim, and in the meantime, the transplant will increase my quality of life for many years. The good outweighs the potential problems in this case.
The evaluation process will involve three days of outpatient testing and consultations with the transplant team. I'll be poked, stress-tested, interviewed by a psychiatrist, and filled with so much knowledge that my head will probably explode. I can't wait.
I don't know why the thought of going through the transplant doesn't scare me. It would be the biggest surgery I've ever undergone, but then, I've never had any real surgery experience. Maybe once this is over I'll think differently, but for now I'm comfortable with the coming attractions. Even though dialysis is not a hardship and we've made the adjustments, it would be nice to get back to a life where three trips a week to dialysis wasn't part of my lifestyle.
In between evaluation sessions, I'll be getting a PET scan and another maintenance treatment, so neither ailment will be lacking for attention next month.
With my attitude re-calibrated back to its positive state, I'm ready to experience the evaluation process.
Saturday, May 21, 2011
Attitude Test
I believe we are always tested. It could be in our work, it could be at home, or it could be with our health. I've always believed that how we face our challenges matter more than the challenges themselves. To date, I feel like I've handled the health tests pretty well. Certainly better than some of the other tests I've faced!
Dialysis with the catheter was fairly uncomplicated, and the adjustments I needed to make with the catheter hanging from my chest weren't the end of the world. Back in December I had a fistula placed. This was a pretty cool experience, and in the weeks following the placement, it was quite the show and tell item with my friends and family!
The fistula is a merging of an artery with a vein.That merger created a buzz within my arm that people are either fascinated by or uncomfortable with. As it developed, the buzzing was more prominent, a good sign that it was strong and going to be great for dialysis when the time came to tap into it. The official term for this buzzing is "the thrill."
Once I cleared all the checks from the surgeon who placed it for me, we were ready to give it a whirl. The staff at the clinic were looking forward to using it too. It was the beginning of the process of getting the catheters removed.
They start you out slow, with a small needle, and gradually work their way up to a bigger needle. All the while, the fistula is still maturing. The plan would be that once I used each needle three times in a row with no drama, I could move to the next size needle. Three more times with no drama, and we move up to the big boy needle. Running good with the big boy needle means make an appointment with the surgeon, because the catheter is on its way out.
Well, as we know, things don't always go as we plan them. The first time the tech tried to access the fistula it infiltrated. That's bad, because it means the needle went through the fistula. My first clue that something was wrong that day was the tech saying, "oh crap." Trust me, this is not something you want to hear from someone sticking a needle into you. In less than the time it took to say "oh crap," my arm swelled up, giving me an arm like Popeye! This wasn't good.
With that, I was hooked up to the catheters. The debut of my fistula was not going to be on this day. The nurses and techs were all nice and supportive. "This happens" is what they all said. Initially, I was down about what happened, but I had to trust the expertise of the people around me, so I accepted that this kind of thing truly did happen, and went to work on getting the swelling down on my arm.
It took almost a month before the selling and bruising cleared up enough for the second attempt. On that second attempt, a different tech tapped into my fistula. Eureka! It worked. I was back in business.
I made it through the small needle with no problems for my required three times. It was time to graduate to the medium size needle. This move was also successful, so three more turns at the trough with the medium needle, and I would graduate to the big boy needle.
The first time with the big boy needle wasn't very productive. There was no infiltration, but there was also no blood. I knew I had blood in me, but I wasn't getting poked in the right part of the fistula to do the deed. So, back to the medium size needles for a few more times. The medium needle continued to work just fine.
One of the techs thought that maybe things would go better if I had a fistula gram to make sure everything with my fistula was fine. The main thing was to make sure it hadn't narrowed or clotted. So, I got my appointment for a Friday afternoon and had my fistula examined. The fistula got great reviews from the surgeon who looked me over, and I was sent on my way, confident that the next time they tried to use the big boy needle, everything would go well.
It did. I cruised through my three swings with the big boy needle. I may have even gone a few extra times just for good measure. Finally, I got the okay to make my appointment to have the catheter removed. May 25 was going to be independence day.
I came into dialysis on May 10 excited about the possibilities of washing my hair in the shower without a cape and a towel draped over my shirt to keep the catheter dry. I settled in to my chair, anticipating another smooth day of dialysis. The first needle went in just fine. As the tech was getting ready to start the second needle, some of the other staff were talking with one of the other patients across the way.
There was some laughter, and one of the other techs said something to the tech that was working on my arm, and as the second needle was going in just fine, the tech's ears perked up and she gave one more push into my arm with the needle and I felt it happen.
It was a sting in a place where there isn't supposed to be any pain. I looked down and saw the area around the needle start to swell. Another infiltration. There was no "oh crap" this time. I don't remember what, if anything, was said. All I knew was that my goal of getting the catheter removed was fading into the sunset. I looked at my arm, and I was pleased to see the swelling wasn't as bad as it was the first time this happened.
I ran that day with one needle and one catheter line. I got ice for my arm right away, so I was hopeful the swelling would subside. When I came back fro my Thursday appointment, I thought the swelling had gone down enough to try again. The nurse agreed, so she tried again. The lower needle worked fine,but nothing was happening with the top needle. My arm started to swell again. Time for more ice.
Now I was angry. Not at the nurse. No, I was convinced that the infiltration that happened on my earlier visit that week was caused by operator error. I was sure that the tech that day was distracted by all the fun happening away from my chair. A little more focus and maybe I wouldn't be getting my arm iced.
I shared my frustration with the Nurse Manager, and she did what she was supposed to do. She stood up for her tech. I expected that, but I mostly just wanted to be heard. Despite having the opportunity to vent, I still couldn't let it go. I was back in the chair the next day (my wife and I were going out of town for the weekend), running with both catheters. My anger continued to build as the techs continued to tell me that my fistula probably wasn't developed enough for the bigger needle. Really? The two weeks of running fine don't count for anything? Was it a fluke that I was running well all that time? I couldn't get my head around that at all.
It didn't take long for my body to pick up on all of this anger, and my reward for this really positive outlook I was carrying around, was to get sick. More good news! As I write this entry, I'm still coughing a bit, but I think I"ll be better on Monday. I'm done being angry, although writing about this again has stirred up some of those earlier feelings. These things happen is the way I've got to face this.
One of the nurses thinks my fistula is clotted. That sounds bad, but that can be corrected. I see the surgeon next week, and I'm thinking now he will be making another appointment to get in there and correct the problem. I'm not overly excited about this, but it's better than waiting for my arm to come around on its own, when it's looking like it won't.
So, as another day of dialysis winds down, I'm looking forward to the resolution of this latest drama. The quality of my dialysis has been great since using the fistula. If I can't tolerate the big needle, which is possible, I should be able to do just as well with the medium sized needle. If that's the case, I'll be making that appointment for removing the catheter sometime in July.
I'm crossing my fingers. In the meantime, I have some other cool stuff happening in June that will help me re-focus.
Dialysis with the catheter was fairly uncomplicated, and the adjustments I needed to make with the catheter hanging from my chest weren't the end of the world. Back in December I had a fistula placed. This was a pretty cool experience, and in the weeks following the placement, it was quite the show and tell item with my friends and family!
The fistula is a merging of an artery with a vein.That merger created a buzz within my arm that people are either fascinated by or uncomfortable with. As it developed, the buzzing was more prominent, a good sign that it was strong and going to be great for dialysis when the time came to tap into it. The official term for this buzzing is "the thrill."
Once I cleared all the checks from the surgeon who placed it for me, we were ready to give it a whirl. The staff at the clinic were looking forward to using it too. It was the beginning of the process of getting the catheters removed.
They start you out slow, with a small needle, and gradually work their way up to a bigger needle. All the while, the fistula is still maturing. The plan would be that once I used each needle three times in a row with no drama, I could move to the next size needle. Three more times with no drama, and we move up to the big boy needle. Running good with the big boy needle means make an appointment with the surgeon, because the catheter is on its way out.
Well, as we know, things don't always go as we plan them. The first time the tech tried to access the fistula it infiltrated. That's bad, because it means the needle went through the fistula. My first clue that something was wrong that day was the tech saying, "oh crap." Trust me, this is not something you want to hear from someone sticking a needle into you. In less than the time it took to say "oh crap," my arm swelled up, giving me an arm like Popeye! This wasn't good.
With that, I was hooked up to the catheters. The debut of my fistula was not going to be on this day. The nurses and techs were all nice and supportive. "This happens" is what they all said. Initially, I was down about what happened, but I had to trust the expertise of the people around me, so I accepted that this kind of thing truly did happen, and went to work on getting the swelling down on my arm.
It took almost a month before the selling and bruising cleared up enough for the second attempt. On that second attempt, a different tech tapped into my fistula. Eureka! It worked. I was back in business.
I made it through the small needle with no problems for my required three times. It was time to graduate to the medium size needle. This move was also successful, so three more turns at the trough with the medium needle, and I would graduate to the big boy needle.
The first time with the big boy needle wasn't very productive. There was no infiltration, but there was also no blood. I knew I had blood in me, but I wasn't getting poked in the right part of the fistula to do the deed. So, back to the medium size needles for a few more times. The medium needle continued to work just fine.
One of the techs thought that maybe things would go better if I had a fistula gram to make sure everything with my fistula was fine. The main thing was to make sure it hadn't narrowed or clotted. So, I got my appointment for a Friday afternoon and had my fistula examined. The fistula got great reviews from the surgeon who looked me over, and I was sent on my way, confident that the next time they tried to use the big boy needle, everything would go well.
It did. I cruised through my three swings with the big boy needle. I may have even gone a few extra times just for good measure. Finally, I got the okay to make my appointment to have the catheter removed. May 25 was going to be independence day.
I came into dialysis on May 10 excited about the possibilities of washing my hair in the shower without a cape and a towel draped over my shirt to keep the catheter dry. I settled in to my chair, anticipating another smooth day of dialysis. The first needle went in just fine. As the tech was getting ready to start the second needle, some of the other staff were talking with one of the other patients across the way.
There was some laughter, and one of the other techs said something to the tech that was working on my arm, and as the second needle was going in just fine, the tech's ears perked up and she gave one more push into my arm with the needle and I felt it happen.
It was a sting in a place where there isn't supposed to be any pain. I looked down and saw the area around the needle start to swell. Another infiltration. There was no "oh crap" this time. I don't remember what, if anything, was said. All I knew was that my goal of getting the catheter removed was fading into the sunset. I looked at my arm, and I was pleased to see the swelling wasn't as bad as it was the first time this happened.
I ran that day with one needle and one catheter line. I got ice for my arm right away, so I was hopeful the swelling would subside. When I came back fro my Thursday appointment, I thought the swelling had gone down enough to try again. The nurse agreed, so she tried again. The lower needle worked fine,but nothing was happening with the top needle. My arm started to swell again. Time for more ice.
Now I was angry. Not at the nurse. No, I was convinced that the infiltration that happened on my earlier visit that week was caused by operator error. I was sure that the tech that day was distracted by all the fun happening away from my chair. A little more focus and maybe I wouldn't be getting my arm iced.
I shared my frustration with the Nurse Manager, and she did what she was supposed to do. She stood up for her tech. I expected that, but I mostly just wanted to be heard. Despite having the opportunity to vent, I still couldn't let it go. I was back in the chair the next day (my wife and I were going out of town for the weekend), running with both catheters. My anger continued to build as the techs continued to tell me that my fistula probably wasn't developed enough for the bigger needle. Really? The two weeks of running fine don't count for anything? Was it a fluke that I was running well all that time? I couldn't get my head around that at all.
It didn't take long for my body to pick up on all of this anger, and my reward for this really positive outlook I was carrying around, was to get sick. More good news! As I write this entry, I'm still coughing a bit, but I think I"ll be better on Monday. I'm done being angry, although writing about this again has stirred up some of those earlier feelings. These things happen is the way I've got to face this.
One of the nurses thinks my fistula is clotted. That sounds bad, but that can be corrected. I see the surgeon next week, and I'm thinking now he will be making another appointment to get in there and correct the problem. I'm not overly excited about this, but it's better than waiting for my arm to come around on its own, when it's looking like it won't.
So, as another day of dialysis winds down, I'm looking forward to the resolution of this latest drama. The quality of my dialysis has been great since using the fistula. If I can't tolerate the big needle, which is possible, I should be able to do just as well with the medium sized needle. If that's the case, I'll be making that appointment for removing the catheter sometime in July.
I'm crossing my fingers. In the meantime, I have some other cool stuff happening in June that will help me re-focus.
Saturday, May 14, 2011
More Lines About My Lifeline
My first post about my wife described the practical side of her contributions to my life. Those are certainly important, but not nearly as important as the emotional support she has provided since all of this drama began.
Jeannie likes to tell people about how much my positive outlook helps me get through the challenges we have faced so far, and the ones that are sure to be coming around the bend. The truth is my positive outlook is a result of the love and support that Jeannie continues to give me every day.
Believe me there have been times when it's been tough to put on a smiley face. In those moments when it's just the two of us, and the enormity of what's taken place in the last couple of years washes over us, it's easy to fall apart. I've crumbled many times, and Jeannie has been there to pick me back up. She's had her moments too, when she has felt sorry for me and all the tests and procedures I've gone through, and the lifestyle changes my conditions have brought upon us both. In those moments, I've had to be strong and remind her that somewhere there are others who are going through the same thing, maybe to a more worse degree or without the support of someone who loves them unconditionally.
It's one thing to declare our love in sickness and in health when we recite our wedding vows, but no one expects that declaration to be tested so early in a marriage. It's something one generally associates with growing old. Well, our test came early. I think we'll pass this test with flying colors and be able to grow old together.
Jeannie likes to tell people about how much my positive outlook helps me get through the challenges we have faced so far, and the ones that are sure to be coming around the bend. The truth is my positive outlook is a result of the love and support that Jeannie continues to give me every day.
Believe me there have been times when it's been tough to put on a smiley face. In those moments when it's just the two of us, and the enormity of what's taken place in the last couple of years washes over us, it's easy to fall apart. I've crumbled many times, and Jeannie has been there to pick me back up. She's had her moments too, when she has felt sorry for me and all the tests and procedures I've gone through, and the lifestyle changes my conditions have brought upon us both. In those moments, I've had to be strong and remind her that somewhere there are others who are going through the same thing, maybe to a more worse degree or without the support of someone who loves them unconditionally.
It's one thing to declare our love in sickness and in health when we recite our wedding vows, but no one expects that declaration to be tested so early in a marriage. It's something one generally associates with growing old. Well, our test came early. I think we'll pass this test with flying colors and be able to grow old together.
My Lifeline
Since beginning this blog, I completed the paperwork for a kidney transplant and will start the evaluation process in June. Before I get started writing about this process, I need to write a couple hundred words about my wife.
Jeannie and I have been married for two years. I told her about the leukemia when we were dating. Other than some doctor visits, leukemia wasn't something that interfered with our life. She may have been thinking that some day I would need treatment, but it wasn't something we talked about.
I introduced her to Dr. Tarantolo when our conversations turned to treatment. As much as I had already come to respect Dr. T through our visits, my admiration and respect grew after observing how he was with Jeannie when they first met. I introduced them during one of my regular Thursday visits, and he immediately turned to her and gave her the rundown of my condition, what he thought about my prognosis, and why he thought it was time for treatment. He was reassuring and confident, and by the time we were finished talking, Jeannie had a better understanding of my situation, and she felt better about the treatment I was preparing for.
To say that Jeannie was supportive and helpful during my initial treatments would be an understatement. She was with me for the first couple of treatments, to make sure I was doing okay and to make sure I got home safely. She made lunch for us to eat during treatments and made friends with all the nurses. She even baked cookies for the nurses during the holidays.
The Rituxan, easy as it was to tolerate, still sapped a lot of my strength from me. Saturdays were usually pretty good days, but on Sundays I was pretty much a couch potato. I didn't have the energy to help much with the daily household duties, so Jeannie picked up the slack there, doing my work on top of the many things she does on a daily basis. By the time Wednesday would roll around, I would feel a bit more normal. Thursdays were the best, and then it would be time for another Friday treatment.
We celebrated our first wedding anniversary with the leukemia reduced to next to nothing. Our lives got back to something resembling a normal routine.
The kidney problems appeared out of left field. Neither one of us were prepared for what my kidneys were going to put us through. After my second kidney biopsy, we met with a dietician who set us up with some dietary ideas that would be more kidney friendly for me. That was all Jeannie needed to dig in and learn more about renal diet needs and get started on making some changes to what we ate.
Jeannie is a great cook. There isn't anything that she can't put together. I was never worried about her ability to adapt to the needs of a renal diet. She wasn't as confident, probably because she was cooking in a way that was different than she had cooked before. To her credit, she hung in there, signed up to receive renal recipes on-line, and started modifying some of her tried and true recipes to adapt them to the renal way.
Since the September train wreck, our lives have changed drastically. Everything we do has to line up with my dialysis schedule, doctor appointments, and Rituxan maintenance treatments. In other words, we don't do much. This has probably been the hardest thing for her. We used to drive back to see her Mom, her son Matt, and the grandkids, Jacob and Olivia, 2-3 times each month. That all changed with my kidneys.
Our trips back to visit have been cut back to once a month, which I know is not what she signed up for when she said yes to my marriage proposal! I feel bad sometimes that my condition has caused such a change in how we are living. She hasn't flinched a bit, and even though it's been tough to accept some of these lifestyle changes, I am so blessed to be with someone willing to do what it takes to make it all work out.
I can't imagine going through all of this myself. I get great compliments from Jan, the dietician at the dialysis clinic, for the way I've been able to do so great with my renal diet and how well all my lab work has turned out. I can't take any of the credit for that. Jeannie deserves all the credit for going above and beyond the call to make sure I have food that is good for me and my situation. I'm truly the luckiest man in the world.
As we prepare for the possibilities on the road to a kidney transplant, I know it will all be fine because Jeannie is right there with me.
Jeannie and I have been married for two years. I told her about the leukemia when we were dating. Other than some doctor visits, leukemia wasn't something that interfered with our life. She may have been thinking that some day I would need treatment, but it wasn't something we talked about.
I introduced her to Dr. Tarantolo when our conversations turned to treatment. As much as I had already come to respect Dr. T through our visits, my admiration and respect grew after observing how he was with Jeannie when they first met. I introduced them during one of my regular Thursday visits, and he immediately turned to her and gave her the rundown of my condition, what he thought about my prognosis, and why he thought it was time for treatment. He was reassuring and confident, and by the time we were finished talking, Jeannie had a better understanding of my situation, and she felt better about the treatment I was preparing for.
To say that Jeannie was supportive and helpful during my initial treatments would be an understatement. She was with me for the first couple of treatments, to make sure I was doing okay and to make sure I got home safely. She made lunch for us to eat during treatments and made friends with all the nurses. She even baked cookies for the nurses during the holidays.
The Rituxan, easy as it was to tolerate, still sapped a lot of my strength from me. Saturdays were usually pretty good days, but on Sundays I was pretty much a couch potato. I didn't have the energy to help much with the daily household duties, so Jeannie picked up the slack there, doing my work on top of the many things she does on a daily basis. By the time Wednesday would roll around, I would feel a bit more normal. Thursdays were the best, and then it would be time for another Friday treatment.
We celebrated our first wedding anniversary with the leukemia reduced to next to nothing. Our lives got back to something resembling a normal routine.
The kidney problems appeared out of left field. Neither one of us were prepared for what my kidneys were going to put us through. After my second kidney biopsy, we met with a dietician who set us up with some dietary ideas that would be more kidney friendly for me. That was all Jeannie needed to dig in and learn more about renal diet needs and get started on making some changes to what we ate.
Jeannie is a great cook. There isn't anything that she can't put together. I was never worried about her ability to adapt to the needs of a renal diet. She wasn't as confident, probably because she was cooking in a way that was different than she had cooked before. To her credit, she hung in there, signed up to receive renal recipes on-line, and started modifying some of her tried and true recipes to adapt them to the renal way.
Since the September train wreck, our lives have changed drastically. Everything we do has to line up with my dialysis schedule, doctor appointments, and Rituxan maintenance treatments. In other words, we don't do much. This has probably been the hardest thing for her. We used to drive back to see her Mom, her son Matt, and the grandkids, Jacob and Olivia, 2-3 times each month. That all changed with my kidneys.
Our trips back to visit have been cut back to once a month, which I know is not what she signed up for when she said yes to my marriage proposal! I feel bad sometimes that my condition has caused such a change in how we are living. She hasn't flinched a bit, and even though it's been tough to accept some of these lifestyle changes, I am so blessed to be with someone willing to do what it takes to make it all work out.
I can't imagine going through all of this myself. I get great compliments from Jan, the dietician at the dialysis clinic, for the way I've been able to do so great with my renal diet and how well all my lab work has turned out. I can't take any of the credit for that. Jeannie deserves all the credit for going above and beyond the call to make sure I have food that is good for me and my situation. I'm truly the luckiest man in the world.
As we prepare for the possibilities on the road to a kidney transplant, I know it will all be fine because Jeannie is right there with me.
Saturday, May 7, 2011
The New Routine
Since I started this blog fairly late in the story, I've had a lot of catching up to do on the events that have brought me to today. The three day a week dialysis routine is not too bad. Of course, it doesn't hurt that since starting dialysis back in September, I'm feeling better than I've felt in a couple of years.
Sure, the schedule is a hassle, and I've had some bad days during and following my sessions, but in general, I can't complain about the dialysis process.
The nurses and the techs are great. They remind me of the nurses at the cancer center in the way that they work hard to make a tough situation pleasant for those of us tied to the dialysis chair for 3-4 hours each day. Like any profession, there are good and bad nurses out there. And, like teachers, it's hard to imagine someone entering into a nursing career if they didn't want to help make the lives of the people in their care better. So far I've been blessed with great people who have looked out for me, made me feel at ease, and have done an outstanding job of giving care.
I've also been fortunate to have a job that I can continue on with despite the dialysis schedule. The President of our company, along with my co-workers, have been flexible and understanding. It doesn't hurt that I am willing to work for awhile during dialysis. Again, I'm fortunate that all I need is a laptop and an Internet connection to do my work while I'm in the chair.
Okay, I get that this sounds like a pretty rosy picture. Part of reason for that is that I choose to paint the picture that way. Anything that can make me feel this good is all right in my book. But, all this good does come with some negatives.
The constant focus on the foods I can eat, and the foods to avoid is a daily battle. I know what healthy eating looks like, but it doesn't quite look like the renal diet! But, it only took passing out twice during dialysis to know that the food focus is critical to making these sessions drama-free. Coming in with too much weight on makes for a tough session.
Leg cramps are another not-so-cool part of dialysis. This has always been a problem for me. One of the things I've learned in dialysis is that my kidneys had a lot to do with this. I used to get terrible leg cramps while I slept. Now the only times my legs cramp is here at dialysis. Sometimes that happens because I don't react soon enough to my legs tightening up. I can ask to have my machine shut off, which, when done soon enough, keeps the cramps at bay.
Mostly though, the leg cramps are a product of sitting in a recliner with my legs resting straight out. It's hard to keep them moving while I'm working, so I try to keep my feet moving as much as I can. Good tunes on the iPod makes that easier too!
Another little negative to this experience is that some days I just feel beat up after dialysis. Usually that's a Tuesday thing, following the weekend and an extra day away from dialysis. I heard a lot of people tell me they feel tired after dialysis. I get that sometimes, but most of the time I'll get a headache later in the day. I've been working around that by eating a little something later in the day. That has made a difference.
The biggest negative, however, is the way dialysis interferes with travel plans. I'm no jet-setter, but with a three times a week dialysis schedule, making travel arrangements is tricky.
Now, I have to say that some of this hassle is of my own making. I like the clinic I go to. Te nurses know me and after almost nine months of this, we do have a good routine established. I'm sure there are other fine dialysis clinics around the country, but trying another clinic is unsettling to me. Fortunately, this clinic works with me when I need to change a day from time to time. Being out of town for a week is going to be harder to work out.
So that's it. Four hassles that don't come anywhere near diminishing the benefits I receive from these sessions. For me, these things are a small price to pay for the improvement in the way I feel.
Sure, the schedule is a hassle, and I've had some bad days during and following my sessions, but in general, I can't complain about the dialysis process.
The nurses and the techs are great. They remind me of the nurses at the cancer center in the way that they work hard to make a tough situation pleasant for those of us tied to the dialysis chair for 3-4 hours each day. Like any profession, there are good and bad nurses out there. And, like teachers, it's hard to imagine someone entering into a nursing career if they didn't want to help make the lives of the people in their care better. So far I've been blessed with great people who have looked out for me, made me feel at ease, and have done an outstanding job of giving care.
I've also been fortunate to have a job that I can continue on with despite the dialysis schedule. The President of our company, along with my co-workers, have been flexible and understanding. It doesn't hurt that I am willing to work for awhile during dialysis. Again, I'm fortunate that all I need is a laptop and an Internet connection to do my work while I'm in the chair.
Okay, I get that this sounds like a pretty rosy picture. Part of reason for that is that I choose to paint the picture that way. Anything that can make me feel this good is all right in my book. But, all this good does come with some negatives.
The constant focus on the foods I can eat, and the foods to avoid is a daily battle. I know what healthy eating looks like, but it doesn't quite look like the renal diet! But, it only took passing out twice during dialysis to know that the food focus is critical to making these sessions drama-free. Coming in with too much weight on makes for a tough session.
Leg cramps are another not-so-cool part of dialysis. This has always been a problem for me. One of the things I've learned in dialysis is that my kidneys had a lot to do with this. I used to get terrible leg cramps while I slept. Now the only times my legs cramp is here at dialysis. Sometimes that happens because I don't react soon enough to my legs tightening up. I can ask to have my machine shut off, which, when done soon enough, keeps the cramps at bay.
Mostly though, the leg cramps are a product of sitting in a recliner with my legs resting straight out. It's hard to keep them moving while I'm working, so I try to keep my feet moving as much as I can. Good tunes on the iPod makes that easier too!
Another little negative to this experience is that some days I just feel beat up after dialysis. Usually that's a Tuesday thing, following the weekend and an extra day away from dialysis. I heard a lot of people tell me they feel tired after dialysis. I get that sometimes, but most of the time I'll get a headache later in the day. I've been working around that by eating a little something later in the day. That has made a difference.
The biggest negative, however, is the way dialysis interferes with travel plans. I'm no jet-setter, but with a three times a week dialysis schedule, making travel arrangements is tricky.
Now, I have to say that some of this hassle is of my own making. I like the clinic I go to. Te nurses know me and after almost nine months of this, we do have a good routine established. I'm sure there are other fine dialysis clinics around the country, but trying another clinic is unsettling to me. Fortunately, this clinic works with me when I need to change a day from time to time. Being out of town for a week is going to be harder to work out.
So that's it. Four hassles that don't come anywhere near diminishing the benefits I receive from these sessions. For me, these things are a small price to pay for the improvement in the way I feel.
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