It's Saturday afternoon, and it's been almost three hours since crossing the finish line at the Bix. I did it! My time was 1 hour and 37 minutes, which was better than last year's time by almost seven minutes. Last year's race was run in cool, rainy weather, but today was a gloriously sunny, warm, and humid day.
There were a couple of firsts for me in this year's race. Obviously, this is my first race with the catheters in my chest. We put some extra gauze under the catheters and we covered the dressing with Saran Wrap. I didn't have any problems keeping that area dry.
The other first, kind of a small thing, but certainly something I didn't do in the last two races, was filling out the medical information on the back of my bib. The bib is where my number is displayed. I figured this would be a good year to start filling in the medical information, just in case. I had a strategy for running this year, but with the heat, I wasn't 100% sure how it would go. I was a little worried.
My strategy worked pretty well. I ran for the first 35 minutes of the race, which included the Brady St. hill, which is an absolute monster right at the start of the race. Going up the hill, the runners, over 20,000, filled the road from curb to curb as far up the hill as you could see. I felt great after going up Brady St. I knew this was going to be a good day.
When I hit 35 minutes, I decided to walk. After climbing one hill, I wasn't too sure I needed to run up another hill, at least not right away. I walked for three minutes and then I started running again. When it was time to climb a hill, I walked. This paid off, because it kept something in my tank for the finish, which is what I wanted. I wanted to finish strong.
I have to say that I felt pretty good for the entire distance. There was a time or two where there was no shade, and that was a bit uncomfortable, but as long as there was shade, and water now and then, the seven miles was manageable.
By the time we got back to the Brady St. hill, beginning our descent back to the finish line, I was running full steam ahead. I was committed to running across the finish line. Once I got to the bottom of the hill, I started looking for Jeannie. I finally found her as I turned the corner and headed down the last 1/8 of a mile to the finish line and the parking lot of the Quad City Times. There I would find water and snacks, so I made sure I finished strong.
I lost a month of training when my fistula got worked on. Looking back, I should've pushed myself a bit harder, because I think it would've helped me run longer during the race. This year I'm feeling like the Bix will be a springboard to continue working out and getting more fit, instead of the culmination of things and then just slipping back into a pattern of little or no activity.
This is my third Bix. the first year I was simply someone with leukemia. Last year, with the leukemia gone from my body following treatment, I was a leukemia survivor. This year, I'm a dialysis patient, running just as well as I did a couple years ago and keeping up with the others around me. Next year, I would love to run as a kidney transplant recipient. That would be great.
Here's a link to the Bix 7 website. http://www.bix7.com/2011/
Saturday, July 30, 2011
Saturday, July 23, 2011
Taking the Fistula Off the DL
I met with Dr. Feldhaus Thursday, and he gave me the thumbs up for getting back to using my fistula. That's great news.
I shared that news with the nurses at the dialysis clinic this morning, so they will resume sticking me on Monday. The only bummer in this deal is that they are going to go back to square one, which means the smallest needle and they are only going to use one needle. I'm sure this approach is the safest, but from where I'm sitting, it's a baby step. I guess if everything goes fine on Monday, I should be back to two needles by Wednesday.
Yes, for the next couple of weeks, my dialysis schedule gets turned around, so I can sit in on some meetings at work, and take part in the Bix, a 7-mile race held in Davenport. The race is next Saturday morning. I'm running four miles without any problems, so I don't anticipate any problems with next week's run. I'm going to run the full distance tomorrow morning and then take a short run Tuesday. Once that's finished, I'll rest until race time.
So, today will be my last day of typing with two hands during dialysis. It will slow me down some, but it's well worth it.
I shared that news with the nurses at the dialysis clinic this morning, so they will resume sticking me on Monday. The only bummer in this deal is that they are going to go back to square one, which means the smallest needle and they are only going to use one needle. I'm sure this approach is the safest, but from where I'm sitting, it's a baby step. I guess if everything goes fine on Monday, I should be back to two needles by Wednesday.
Yes, for the next couple of weeks, my dialysis schedule gets turned around, so I can sit in on some meetings at work, and take part in the Bix, a 7-mile race held in Davenport. The race is next Saturday morning. I'm running four miles without any problems, so I don't anticipate any problems with next week's run. I'm going to run the full distance tomorrow morning and then take a short run Tuesday. Once that's finished, I'll rest until race time.
So, today will be my last day of typing with two hands during dialysis. It will slow me down some, but it's well worth it.
Thursday, July 21, 2011
Doctor Visits
Some days the cynical part of me takes control and starts writing. Today is one of those days.
Let's set the scene. It's a dialysis day. Most of the patients here with me are either sleeping or watching TV. Some do both at the same time!
With all of this activity going on, guess who walks in? A doctor or a nurse practitioner. From what I understand, Medicare requires them to make a monthly visit to see their dialysis patients. It doesn't matter if there are no changes to report or if the patient has any questions. The doctor appears at a convenient day for them to make their rounds. The whole event can take anywhere from 10 - 15 minutes and then like a tornado disappearing back into the clouds, the doctor (or the nurse practitioner) is gone.
While I can't say that I've heard all the conversations that take place, I can tell you what happens when Dr. Frock is in the house to visit his patients. He's got three of us here on Tuesday, Thursday, and Saturday. He generally starts with me.
He gets my latest lab results, which could be 2-4 weeks old, depending on the timing of his visit. He goes over the results, usually in a less detailed manner than the dietician does the first day the results are back in, and then he asks some questions about how I'm feeling, he listens to my heart and lungs, and then rolls on over to my neighbor.
Sometimes, I get bonus coverage, and he'll listen to my fistula (since my fistula has been on the DL for a couple months, he's done this the last two times he's visited) and he'll check my legs for swelling.
Each month I get an Explanation of Benefits report from the insurance company, and there's his visit, listed along with the other items on the report. Any guesses on what the charges are for these visits? Go on, guess. I'll wait.
Since this may differ between patients and insurance carriers, let's just say that the original charge is in the $400 range, but thanks to my insurance carrier, Dr. Frock gets about $150 less than that.
Now, I don't begrudge anyone for making their living. I have grown to respect the care and expertise I've received from the doctors I've encountered. So, before anyone thinks I think the doctors should make these visits for nothing, sit back down in your chair.
If these doctor visits are a Medicare requirement, it would seem to me that a boatload of money could be saved by removing the requirement that these visits have to take place monthly. I don't need to see my doctor monthly. Certainly not for all the information we share. There's no real value in that for me as a patient.
The clinic nurses look out for their patients pretty darn good. When we need something that requires a doctor's approval or input, there's never any hesitation on the staff's part to make contact. If I feel like
I need some questions answered, I could always call Dr. Frock and ask if he could come to the clinic for a visit. A scheduled visit would be more useful for the doctor and the patient.
I know, the cynic in me is probably missing the bigger picture in these visits. On the other hand, with no shortage of patients on dialysis, I don't think that nephrologists are going to be wondering where their next meal is coming from for quite some time.
It should also be clear here that I think Dr. Frock is a fine doctor. I enjoy talking with him, but I lke talking to lots of people. That doesn't mean I want to get a bill for each conversation.
That's my rant for the day. It's something that has always gnawed at me, so I needed to get this off my chest. I'm better now. Do any of the other dialysis patients that may look in on this blog ever wonder about these doctor visits?
Speaking of doctor visits, and taking a much less cynical tone, I'm scheduled to see Dr. Feldhaus today. I'm hoping to hear him give me the all clear, so the nurses can start back to using my fistula. Getting the fistula off the DL means that I'm closer to getting the catheter removed from my chest. That will be a red letter day for sure!
Let's set the scene. It's a dialysis day. Most of the patients here with me are either sleeping or watching TV. Some do both at the same time!
With all of this activity going on, guess who walks in? A doctor or a nurse practitioner. From what I understand, Medicare requires them to make a monthly visit to see their dialysis patients. It doesn't matter if there are no changes to report or if the patient has any questions. The doctor appears at a convenient day for them to make their rounds. The whole event can take anywhere from 10 - 15 minutes and then like a tornado disappearing back into the clouds, the doctor (or the nurse practitioner) is gone.
While I can't say that I've heard all the conversations that take place, I can tell you what happens when Dr. Frock is in the house to visit his patients. He's got three of us here on Tuesday, Thursday, and Saturday. He generally starts with me.
He gets my latest lab results, which could be 2-4 weeks old, depending on the timing of his visit. He goes over the results, usually in a less detailed manner than the dietician does the first day the results are back in, and then he asks some questions about how I'm feeling, he listens to my heart and lungs, and then rolls on over to my neighbor.
Sometimes, I get bonus coverage, and he'll listen to my fistula (since my fistula has been on the DL for a couple months, he's done this the last two times he's visited) and he'll check my legs for swelling.
Each month I get an Explanation of Benefits report from the insurance company, and there's his visit, listed along with the other items on the report. Any guesses on what the charges are for these visits? Go on, guess. I'll wait.
Since this may differ between patients and insurance carriers, let's just say that the original charge is in the $400 range, but thanks to my insurance carrier, Dr. Frock gets about $150 less than that.
Now, I don't begrudge anyone for making their living. I have grown to respect the care and expertise I've received from the doctors I've encountered. So, before anyone thinks I think the doctors should make these visits for nothing, sit back down in your chair.
If these doctor visits are a Medicare requirement, it would seem to me that a boatload of money could be saved by removing the requirement that these visits have to take place monthly. I don't need to see my doctor monthly. Certainly not for all the information we share. There's no real value in that for me as a patient.
The clinic nurses look out for their patients pretty darn good. When we need something that requires a doctor's approval or input, there's never any hesitation on the staff's part to make contact. If I feel like
I need some questions answered, I could always call Dr. Frock and ask if he could come to the clinic for a visit. A scheduled visit would be more useful for the doctor and the patient.
I know, the cynic in me is probably missing the bigger picture in these visits. On the other hand, with no shortage of patients on dialysis, I don't think that nephrologists are going to be wondering where their next meal is coming from for quite some time.
It should also be clear here that I think Dr. Frock is a fine doctor. I enjoy talking with him, but I lke talking to lots of people. That doesn't mean I want to get a bill for each conversation.
That's my rant for the day. It's something that has always gnawed at me, so I needed to get this off my chest. I'm better now. Do any of the other dialysis patients that may look in on this blog ever wonder about these doctor visits?
Speaking of doctor visits, and taking a much less cynical tone, I'm scheduled to see Dr. Feldhaus today. I'm hoping to hear him give me the all clear, so the nurses can start back to using my fistula. Getting the fistula off the DL means that I'm closer to getting the catheter removed from my chest. That will be a red letter day for sure!
Saturday, July 16, 2011
Cramping My Style
If it's Saturday, and it's early in the morning, it must be a dialysis day. The dialysis experience is generally not too bad. I've mentioned before that anything that can leave me feeling as good as I do is worth a little inconvenience.
Last Saturday I had an experience I haven't had in quite some time. I got leg cramps during treatment. If any readers of this blog are dialysis patients, you have probably had this happen to you too. For me, the cramping is the worst part of the whole deal.
Most days my feet are the first to tighten up. This usually starts around 90 minutes to two hours in. I try to keep my feet and legs moving, to keep them loose, but by the time three hours are in, I have to ask to be turned off. It seems like I very rarely make it through a whole dialysis session without this happening.
As it turned out, last Thursday I was able to get through an entire session without asking to be turned off. A red letter day for sure, because the longer I can stay on, the better my chance of getting off all the fluid that I put on in between sessions.
Last Saturday, with Thursday's success fresh in my head, I was committed to staying on for the entire four hours. At 2 1/2 hours my feet started cramping. No sweat, I thought. I can tough it out. The cramps in the foot come and go, so I was trying to notice how far apart the cramps were happening. Finally, after 30 minutes of being tough, I realized the cramping wasn't letting up, so I asked to be shut off.
When the machine is turned off, the blood is still getting cleaned, so the transfer is still taking place. The only difference is that no fluid is getting removed. For me, this isn't terrible, because I don't come in to dialysis with a lot of fluid on in the first place.
So, about 10 minutes after being shut off, my left leg cramps. Fortunately, Judi, one of the terrific nurses at the clinic, was standing close by. She came over and pushed on my foot, which helped considerably. Of course, I know my leg cramps, and I knew it was just a matter of time before it moved. As long as it didn't move up my leg, I knew I would be able to get through this round of cramping.
Of course, at this time of morning, other patients are ready to come off and go home, so it wasn't going to work having Judi continue to stand by me and push on my foot. So, when she went to take another patient off, I pounded my fist into the arm rests every time my cramp reminded me who was in charge. And then the fun started.
I could feel my face getting warm. Not a good sign. I've passed out twice at dialysis, back in my first few weeks of treatment. Each time, the warm face thing was part of the lead-in to passing out. Judi was with someone next to me, so I told her I was feeling warm. That's when she noticed my blood pressure had dropped to 98/65, another sign that I wasn't doing too good.
Even though I had about 15 minutes left to go for my four hours, Judi decided it was time to take me off, get my blood returned, and put an end to this before I went out. All of this business happened over 10 or 15 minutes, but when you can't stand up or do anything to stop the cramping, the time feels like an eternity. I was happy to hear they were taking me off early.
Once they had me off, my blood pressure bounced right back up, so that was a big plus. I was able to stand up and put some weight on my cramp, and that helped too. The cramp went away, but I could feel the knot in my leg. The knot stayed with me for the rest of the day, serving as a reminder that next time I had better ask to be turned off with the first foot cramp. It was a reminder that still resonates this morning as I write this.
My left foot is getting that feeling, as if it's ready to cramp. So far, it's just been teasing me with cramping, but as soon as it starts getting serious, I'm going to be calling out around the world, because there will be cramping in the streets.
Last Saturday I had an experience I haven't had in quite some time. I got leg cramps during treatment. If any readers of this blog are dialysis patients, you have probably had this happen to you too. For me, the cramping is the worst part of the whole deal.
Most days my feet are the first to tighten up. This usually starts around 90 minutes to two hours in. I try to keep my feet and legs moving, to keep them loose, but by the time three hours are in, I have to ask to be turned off. It seems like I very rarely make it through a whole dialysis session without this happening.
As it turned out, last Thursday I was able to get through an entire session without asking to be turned off. A red letter day for sure, because the longer I can stay on, the better my chance of getting off all the fluid that I put on in between sessions.
Last Saturday, with Thursday's success fresh in my head, I was committed to staying on for the entire four hours. At 2 1/2 hours my feet started cramping. No sweat, I thought. I can tough it out. The cramps in the foot come and go, so I was trying to notice how far apart the cramps were happening. Finally, after 30 minutes of being tough, I realized the cramping wasn't letting up, so I asked to be shut off.
When the machine is turned off, the blood is still getting cleaned, so the transfer is still taking place. The only difference is that no fluid is getting removed. For me, this isn't terrible, because I don't come in to dialysis with a lot of fluid on in the first place.
So, about 10 minutes after being shut off, my left leg cramps. Fortunately, Judi, one of the terrific nurses at the clinic, was standing close by. She came over and pushed on my foot, which helped considerably. Of course, I know my leg cramps, and I knew it was just a matter of time before it moved. As long as it didn't move up my leg, I knew I would be able to get through this round of cramping.
Of course, at this time of morning, other patients are ready to come off and go home, so it wasn't going to work having Judi continue to stand by me and push on my foot. So, when she went to take another patient off, I pounded my fist into the arm rests every time my cramp reminded me who was in charge. And then the fun started.
I could feel my face getting warm. Not a good sign. I've passed out twice at dialysis, back in my first few weeks of treatment. Each time, the warm face thing was part of the lead-in to passing out. Judi was with someone next to me, so I told her I was feeling warm. That's when she noticed my blood pressure had dropped to 98/65, another sign that I wasn't doing too good.
Even though I had about 15 minutes left to go for my four hours, Judi decided it was time to take me off, get my blood returned, and put an end to this before I went out. All of this business happened over 10 or 15 minutes, but when you can't stand up or do anything to stop the cramping, the time feels like an eternity. I was happy to hear they were taking me off early.
Once they had me off, my blood pressure bounced right back up, so that was a big plus. I was able to stand up and put some weight on my cramp, and that helped too. The cramp went away, but I could feel the knot in my leg. The knot stayed with me for the rest of the day, serving as a reminder that next time I had better ask to be turned off with the first foot cramp. It was a reminder that still resonates this morning as I write this.
My left foot is getting that feeling, as if it's ready to cramp. So far, it's just been teasing me with cramping, but as soon as it starts getting serious, I'm going to be calling out around the world, because there will be cramping in the streets.
Saturday, July 9, 2011
An Odds and Ends Day
It's funny how normal days, those days where there's no discussion of transplants, kidney disease, fistulas, or dialysis, feel so good. Yesterday was one of those boring normal days, that I so badly want to return to.
It was my brother-in-law's 75th birthday celebration. Nothing fancy. Just all of us getting together to talk, laugh, and just be together. In the space of almost 3 1/2 hours, it was cool to just be a part of the laughter and the stories that had nothing to do with getting poked with needles or visiting with doctors for the latest pronouncement on my condition.
As I've mentioned before, I think these kind of days help my family get more comfortable with being around me. No one seemed worried that I was going to drop another request for a kidney in the middle of the celebration. That makes it easier for me too.
A thought that I keep coming back to in recent days is how different we are when it comes to dealing with doctors and our medical conditions. A friend of mine shared with me that he learned he has cancer, and although it looks like it was detected early and there are plenty of reasons to be optimistic, he shared with me how difficult it is for him to deal with the doctors.
What can you say about that? I'm certainly no expert on the subject, but I know that I want to live. If that means I have to ask questions over and over until things make sense to me, I'm going to do that. We have to be advocates for ourselves, and hope that comes across to the health care providers, so they understand that they can't bullshit their way through a visit.
Something else I see, especially in the dialysis clinic, are people that won't take care of themselves or take advantage of the resources available to them to help them navigate through something like kidney disease. It sucks to have to come to dialysis, but the payoff after each visit is another day of feeling better. Between dialysis and paying closer attention to what I put in my mouth, I'm feeling better today than I was feeling a year ago at this time. Certainly, I can't be the only one who picks up on the positive things that happens when we take care of ourselves.
This is what happens when I have idle time to think about stuff. I need some more hobbies! Maybe I just need some more normal days like I had yesterday. Those sure are nice.
It was my brother-in-law's 75th birthday celebration. Nothing fancy. Just all of us getting together to talk, laugh, and just be together. In the space of almost 3 1/2 hours, it was cool to just be a part of the laughter and the stories that had nothing to do with getting poked with needles or visiting with doctors for the latest pronouncement on my condition.
As I've mentioned before, I think these kind of days help my family get more comfortable with being around me. No one seemed worried that I was going to drop another request for a kidney in the middle of the celebration. That makes it easier for me too.
A thought that I keep coming back to in recent days is how different we are when it comes to dealing with doctors and our medical conditions. A friend of mine shared with me that he learned he has cancer, and although it looks like it was detected early and there are plenty of reasons to be optimistic, he shared with me how difficult it is for him to deal with the doctors.
What can you say about that? I'm certainly no expert on the subject, but I know that I want to live. If that means I have to ask questions over and over until things make sense to me, I'm going to do that. We have to be advocates for ourselves, and hope that comes across to the health care providers, so they understand that they can't bullshit their way through a visit.
Something else I see, especially in the dialysis clinic, are people that won't take care of themselves or take advantage of the resources available to them to help them navigate through something like kidney disease. It sucks to have to come to dialysis, but the payoff after each visit is another day of feeling better. Between dialysis and paying closer attention to what I put in my mouth, I'm feeling better today than I was feeling a year ago at this time. Certainly, I can't be the only one who picks up on the positive things that happens when we take care of ourselves.
This is what happens when I have idle time to think about stuff. I need some more hobbies! Maybe I just need some more normal days like I had yesterday. Those sure are nice.
Tuesday, July 5, 2011
Frightening the Family
As anyone who goes through an experience with any kind of illness will tell you, it is critical to have a good support system surrounding you. I have that, and it has made this whole process much easier to go through.
I've written before about my wife, but it goes without saying that without her in this with me, I would be floundering.
My family has been great too, but it's clearer to me now that all of this stuff is a bit frightening to them. I send out updates to everyone as things happen, because we're scattered all over the place. E-mail updates seemed to make the most sense.
I usually hear from a few people with every update. Words of encouragement usually, but sometimes they have more questions too, so I like being able to answer those for them.
When the whole transplant thing became more realistic, and I was writing about this to them, the replies became a little less frequent. Admittedly, I may have caused this, because in each of the updates I was explaining how "easy" it was to donate, and in each of the transplant updates, I encouraged them to get tested to see if we would be a match.
I know how big of a request it is to ask a family member to donate a kidney. My mistake in all of this has been to discuss it in a way that makes it sound like it's a walk in the park. Part of that comes from us getting more comfortable with the whole transplant process, to the extent that it really doesn't seem like a big deal. The other reason I took such a positive approach to explaining the process, was that I didn't want to make it sound like some crazy out of this world thing that looks like a last resort.
So, along the way, I feel like I did the very thing I was trying to avoid. I've since sent out an update that was supposed to help people feel more at ease with saying no, because I don't want anyone feeling guilty about not wanting to donate, or not being comfortable with the whole donation idea.
The other thing I noticed in my updates and during those times when we would be gathered together for a birthday celebration or something was that my kidneys always seemed to be the center of the conversations I was having. There I was, letting the kidney disease become the thing that defined me to my family.
With all that in mind, I was absolutely ecstatic when we got together with family on Friday, and my kidneys never came up. It felt like a breath of fresh air, and it showed everyone that I wasn't going to follow them around and nag them about whether or not they wanted to get tested. Maybe it was a missed opportunity to recruit, but there will be other times for that, and maybe, the space will encourage some to ask more questions. We'll see.
I've written before about my wife, but it goes without saying that without her in this with me, I would be floundering.
My family has been great too, but it's clearer to me now that all of this stuff is a bit frightening to them. I send out updates to everyone as things happen, because we're scattered all over the place. E-mail updates seemed to make the most sense.
I usually hear from a few people with every update. Words of encouragement usually, but sometimes they have more questions too, so I like being able to answer those for them.
When the whole transplant thing became more realistic, and I was writing about this to them, the replies became a little less frequent. Admittedly, I may have caused this, because in each of the updates I was explaining how "easy" it was to donate, and in each of the transplant updates, I encouraged them to get tested to see if we would be a match.
I know how big of a request it is to ask a family member to donate a kidney. My mistake in all of this has been to discuss it in a way that makes it sound like it's a walk in the park. Part of that comes from us getting more comfortable with the whole transplant process, to the extent that it really doesn't seem like a big deal. The other reason I took such a positive approach to explaining the process, was that I didn't want to make it sound like some crazy out of this world thing that looks like a last resort.
So, along the way, I feel like I did the very thing I was trying to avoid. I've since sent out an update that was supposed to help people feel more at ease with saying no, because I don't want anyone feeling guilty about not wanting to donate, or not being comfortable with the whole donation idea.
The other thing I noticed in my updates and during those times when we would be gathered together for a birthday celebration or something was that my kidneys always seemed to be the center of the conversations I was having. There I was, letting the kidney disease become the thing that defined me to my family.
With all that in mind, I was absolutely ecstatic when we got together with family on Friday, and my kidneys never came up. It felt like a breath of fresh air, and it showed everyone that I wasn't going to follow them around and nag them about whether or not they wanted to get tested. Maybe it was a missed opportunity to recruit, but there will be other times for that, and maybe, the space will encourage some to ask more questions. We'll see.
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