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.
Tuesday, January 31, 2012
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,
Friday, December 23, 2011
Tis the Season
Sitting in the dialysis chair with antlers resting on my ball cap seems like the perfect time to do a little writing. The blood is moving effortlessly out of my arm, into the machine that filters it and returns it back to me. My fistula is working like a champ.
The catheter that had to go in after my fistula was worked on is gone. In other words, things are starting to get back to normal. Well, the new normal anyway.
This week the new normal included a maintenance treatment of Rituxan, so my CLL got a little attention. I also got to spend some quality time with my dentist. Add in my dialysis visits, and health care was almost a full time job this week.
All this health care is doing great things for me. Seriously, I don't think I've felt this good in a long time. All my blood work this month has been great. It's a great time to get started back to getting my body in shape. There's a transplant in my future, and I want to make sure I'm in shape to accept my new organ.
No, there's no donor in sight yet, but I feel like it's just a matter of time. So for now, it's time to enjoy the Christmas season, the beautiful weather that makes it possible for us to drive back and spend the holiday with Jeannie's family, and just let things unfold the way they are supposed to unfold. I'm open to all the possibilities.
All that's left to say is Merry Christmas to all!
The catheter that had to go in after my fistula was worked on is gone. In other words, things are starting to get back to normal. Well, the new normal anyway.
This week the new normal included a maintenance treatment of Rituxan, so my CLL got a little attention. I also got to spend some quality time with my dentist. Add in my dialysis visits, and health care was almost a full time job this week.
All this health care is doing great things for me. Seriously, I don't think I've felt this good in a long time. All my blood work this month has been great. It's a great time to get started back to getting my body in shape. There's a transplant in my future, and I want to make sure I'm in shape to accept my new organ.
No, there's no donor in sight yet, but I feel like it's just a matter of time. So for now, it's time to enjoy the Christmas season, the beautiful weather that makes it possible for us to drive back and spend the holiday with Jeannie's family, and just let things unfold the way they are supposed to unfold. I'm open to all the possibilities.
All that's left to say is Merry Christmas to all!
Saturday, November 26, 2011
Giving Thanks
It's been awhile since I've posted anything here. The last 60 days have been a tug of war between the positive attitude I've tried to maintain and the frustrating reality of dealing with the setbacks of using a fistula and just going through the whole dialysis process.
The frustrating part of all of this reared its head back in October when my fistula stopped working. I noticed that the fistula wasn't buzzing after a Saturday dialysis session. I thought it might have been caused by the tightly wrapped gauze covering the access spots on my arm. After I removed the tape and the gauze, I waited for the fistula to spring back to life. It didn't.
It felt a little more alive on Monday, so I held out hope that by Tuesday it would be fine. It wasn't. When I asked the nurses to listen to the fistula, there was nothing there. No swish. Since my catheter had already been removed, all they could do was draw some blood and check my potassium, and then send me home.
Hats off to Luanne, my nurse that day. She contacted Dr. Frock and explained what happened, and then she went to work to get me scheduled to get my fistula repaired. I went to work as if it was a non-dialysis day, not knowing if I would be working a full day or not.
Luanne called me later in the morning to let me know my potassium was normal. That meant I could go another day without dialysis. Dr. Feldhaus was out, so he wasn't available to see me to do anything with the fistula. The next call went to Dr. Gutta, the surgeon who put in my catheter last year.
He was available and could work on my fistula at 4pm that afternoon. So, Jeannie and I did what we seem to be getting better and better at. We dropped what we were doing, put in for time off of work, and headed to Bergan for another procedure.
When we got to the hospital around 2pm, I joked with the registration person that I'm here so often that they should give me a time card! When the nurse came out to get me, it was Molly, a nurse I've had before on my other visits, so this time around it was like old home week.
Dr. Gutta came in a little bit before 4 to explain what he would do, and to prepare me for the possibility that he may have to place another catheter. I was hoping to avoid that, but I was beginning to resign myself to the fact that I was leaving there with another catheter.
Dr. Gutta did a fine job opening up the upper part of my fistula which had narrowed. The graft section that Dr. Feldhaus placed was pretty well chewed up and Gutta was able to repair that too. He had to place a catheter again, since my fistula would need a couple weeks to heal.
The fistula healed just fine, and for a couple of weeks I got to use both hands while working at dialysis! But now I'm back to being a one-armed worker during dialysis. I don't really mind. The fistula is working great, and now thanks to a little map that Gutta drew on my arm, the dialysis staff has a better idea of where to stick me. The area around the graft is still swollen, so all the poking has been done in my upper arm, but I'm back to using the medium needles like I was last month, so I should be able to make an appointment to get the catheter removed in a couple of weeks.
Here's the deal about getting that catheter removed. Dr. Gutta says all I have to do is make an appointment to come into his office and he just yanks it out. I'm sure it's a little bit smoother of a process than just yanking it out, but it's not going to be a surgical procedure. That sounds like a recipe for pain. I heard a story of someone who asked to keep their catheter as a souvenir. I hadn't thought about that before, but it sounds like a good idea now. Hopefully, he will let me keep this one.
So now, on Thanksgiving weekend, with a possible kidney donor from work, I'm trying to be positive and look forward to getting a new kidney in January. At the same time I must admit I'm feeling pretty resigned to being a dialysis patient for awhile. That isn't a particularly pleasing thought, especially after this latest drama.
After being in dialysis for a little over a year, I can say that it is a pain. Forget the fact that I can't go more than three days without dialysis, which is limiting enough, but there's the pain and frustration of going through these surgeries to repair the fistula and the recovery time associated with each occurrence.
It seems like just when I get my head around the routine, and I start to return to a normal routine of exercise and good eating, something happens to throw me off the track. This is the part of the grind that is wearing me down. I want the transplant. I need a donor. I don't know how much more plainly I can put it.
I know there's a feeling among my family that Jeannie should get tested, so we can see if she's a donor. My position on this all along has been that going this way would prevent us from being there for each other during our procedures. Since the procedures to remove and transplant the kidney would happen at the same time, we would not be there to help the other get through each surgery.
Then, there's taking care of us when we get home. We would need someone with us to help us with meals, cleaning, and the other day to day things we take for granted. We would probably need help for about a month or so. To their credit, my nieces have all offered to help us get back on our feet during the recovery time.
Finally, even if we had enough help to get the care we needed when we got home. And, we could go into this knowing that we would see each other in our room, after the transplant. Even with all of that covered, there's still an 80% likelihood that she is not going to be a match.
So, there's still a lot to get worked out. The donor question doesn't come up during family visits any longer. I don't ask, and I don't get asked. It feels like I'm at a dead end.
Yet, despite that, there's plenty to be thankful for. Even though I'm not crazy about dialysis, it's keeping me alive and able to do most of the things I want to do. My leukemia is in remission and by next September, I will be finished with the maintenance treatments.
I'm doing work I enjoy, despite working for a boss I don't enjoy. All in all, I continue to be a work in progress. Maybe in a way, we all are a work in progress. If we weren't working on getting better or just evolving, we wouldn't be living.
Happy Thanksgiving!
The frustrating part of all of this reared its head back in October when my fistula stopped working. I noticed that the fistula wasn't buzzing after a Saturday dialysis session. I thought it might have been caused by the tightly wrapped gauze covering the access spots on my arm. After I removed the tape and the gauze, I waited for the fistula to spring back to life. It didn't.
It felt a little more alive on Monday, so I held out hope that by Tuesday it would be fine. It wasn't. When I asked the nurses to listen to the fistula, there was nothing there. No swish. Since my catheter had already been removed, all they could do was draw some blood and check my potassium, and then send me home.
Hats off to Luanne, my nurse that day. She contacted Dr. Frock and explained what happened, and then she went to work to get me scheduled to get my fistula repaired. I went to work as if it was a non-dialysis day, not knowing if I would be working a full day or not.
Luanne called me later in the morning to let me know my potassium was normal. That meant I could go another day without dialysis. Dr. Feldhaus was out, so he wasn't available to see me to do anything with the fistula. The next call went to Dr. Gutta, the surgeon who put in my catheter last year.
He was available and could work on my fistula at 4pm that afternoon. So, Jeannie and I did what we seem to be getting better and better at. We dropped what we were doing, put in for time off of work, and headed to Bergan for another procedure.
When we got to the hospital around 2pm, I joked with the registration person that I'm here so often that they should give me a time card! When the nurse came out to get me, it was Molly, a nurse I've had before on my other visits, so this time around it was like old home week.
Dr. Gutta came in a little bit before 4 to explain what he would do, and to prepare me for the possibility that he may have to place another catheter. I was hoping to avoid that, but I was beginning to resign myself to the fact that I was leaving there with another catheter.
Dr. Gutta did a fine job opening up the upper part of my fistula which had narrowed. The graft section that Dr. Feldhaus placed was pretty well chewed up and Gutta was able to repair that too. He had to place a catheter again, since my fistula would need a couple weeks to heal.
The fistula healed just fine, and for a couple of weeks I got to use both hands while working at dialysis! But now I'm back to being a one-armed worker during dialysis. I don't really mind. The fistula is working great, and now thanks to a little map that Gutta drew on my arm, the dialysis staff has a better idea of where to stick me. The area around the graft is still swollen, so all the poking has been done in my upper arm, but I'm back to using the medium needles like I was last month, so I should be able to make an appointment to get the catheter removed in a couple of weeks.
Here's the deal about getting that catheter removed. Dr. Gutta says all I have to do is make an appointment to come into his office and he just yanks it out. I'm sure it's a little bit smoother of a process than just yanking it out, but it's not going to be a surgical procedure. That sounds like a recipe for pain. I heard a story of someone who asked to keep their catheter as a souvenir. I hadn't thought about that before, but it sounds like a good idea now. Hopefully, he will let me keep this one.
So now, on Thanksgiving weekend, with a possible kidney donor from work, I'm trying to be positive and look forward to getting a new kidney in January. At the same time I must admit I'm feeling pretty resigned to being a dialysis patient for awhile. That isn't a particularly pleasing thought, especially after this latest drama.
After being in dialysis for a little over a year, I can say that it is a pain. Forget the fact that I can't go more than three days without dialysis, which is limiting enough, but there's the pain and frustration of going through these surgeries to repair the fistula and the recovery time associated with each occurrence.
It seems like just when I get my head around the routine, and I start to return to a normal routine of exercise and good eating, something happens to throw me off the track. This is the part of the grind that is wearing me down. I want the transplant. I need a donor. I don't know how much more plainly I can put it.
I know there's a feeling among my family that Jeannie should get tested, so we can see if she's a donor. My position on this all along has been that going this way would prevent us from being there for each other during our procedures. Since the procedures to remove and transplant the kidney would happen at the same time, we would not be there to help the other get through each surgery.
Then, there's taking care of us when we get home. We would need someone with us to help us with meals, cleaning, and the other day to day things we take for granted. We would probably need help for about a month or so. To their credit, my nieces have all offered to help us get back on our feet during the recovery time.
Finally, even if we had enough help to get the care we needed when we got home. And, we could go into this knowing that we would see each other in our room, after the transplant. Even with all of that covered, there's still an 80% likelihood that she is not going to be a match.
So, there's still a lot to get worked out. The donor question doesn't come up during family visits any longer. I don't ask, and I don't get asked. It feels like I'm at a dead end.
Yet, despite that, there's plenty to be thankful for. Even though I'm not crazy about dialysis, it's keeping me alive and able to do most of the things I want to do. My leukemia is in remission and by next September, I will be finished with the maintenance treatments.
I'm doing work I enjoy, despite working for a boss I don't enjoy. All in all, I continue to be a work in progress. Maybe in a way, we all are a work in progress. If we weren't working on getting better or just evolving, we wouldn't be living.
Happy Thanksgiving!
Wednesday, September 28, 2011
Who Was I Kidding?
I was young and foolish when I wrote my last post! It would've been so great to run or work out, or do anything. But, since that last post I have been consumed by pain caused by the Cipro. I've discovered another drug that I am allergic to.
Everything seemed fine with the Cipro, at first. The UTI cleared up within a few days, so I really thought my routine would start returning to normal.
On Wednesday, August 31, I went with a co-worker out to visit a customer. I dressed up for the visit, wearing a pair of dress shoes I wear once or twice a month. Usually I wear these shoes at work, where I'm walking on carpet. When we got to the customer's office, we walked a lot of sidewalks, moving between a couple different buildings. I didn't think anything of it at the time.
The next day my left foot was sore, which I attributed to the shoes. During the afternoon at work, my foot got so sore that I took my shoe off. My foot had swollen up pretty big, so I left my shoe off for the afternoon.
At the same time, I noticed my right shoulder was sore too. Thursday was a dialysis day, and I had my right arm resting on a pillow for four hours. My right arm was pointed in a 45 degree angle, so I wasn't surprised that it was stiff after dialysis was finished. What surprised me was how much it hurt a couple hours after dialysis was over.
By mid-afternoon I was limping around with a bum left foot and my right shoulder was sore to the touch. It seemed like I was falling apart.
Thursday night I soaked my foot and iced my shoulder, both of which provided some temporary relief. By the next morning my foot and shoulder were still sore. I had to wear my sandals to work, because I couldn't fit into any of my shoes. I kept icing my shoulder and I did my best to keep my foot elevated. Nothing seemed to be helping.
In a clear-headed moment, I wondered if there was a connection between the joint pain I was feeling and the Cipro. I did some searching and found some information that would support that. I know, using the internet for medical advice isn't the best way to go, but I wasn't looking for medical advice, as much as I was looking for anyone who had the same experiences.
I called Dr. Konigsberg to see if I could stop taking the Cipro. I spoke with a nurse, and she told me that what I was experiencing was not a typical reaction to the Cipro, but she said it was okay for me to stop taking it.
I made it through the day at work, but my foot was in a lot of pain by the time I got home. Jeannie suggested we got to the ER just to make sure there wasn't something else going on. Great, I thought. Friday night in the ER on Labor Day weekend. It should be an experience!
We got there around 7:45pm, and there was no one waiting ahead of me. In fact, the nurse was out to get me before we were done getting checked in. We went to Bergan which has become a bit of a second home for me, considering all the procedures and visits I've made there in the last year.
Once all my vitals were taken, a nurse practitioner came in to look at my foot. She ordered X-rays and a blood draw. The initial thought was gout. So, we hung out in the ER room. and I got my blood drawn and I got my foot X-rayed. While checking out my foot, the NP wasn't sure about the gout, because I only had pain in one part of my foot, and not the whole foot.
Since there wasn't going to be any magical cures coming from this visit, and since it didn't appear to be broken, the next step was to help me with the pain. I got a shot of morphine and Vicodin, which definitely took the edge off. Did I mention that I wasn't sleeping during the week? I was waking up after about four hours with a lower back pain that kept me awake the rest of the night. The morphine and Vicodin was going to get me some sleep that I dearly needed.
I was also given a prescription for Prednisone, which was supposed to help clear up whatever was trying to happen with my foot. All in all, it wasn't a terrible visit to the ER.
I took it easy over the long weekend, but the pain in my foot and my shoulder were still present. I only had to take the Prednisone for four days, and it was a relatively small dose. The only thing taking my mind off the pain was looking forward to getting my catheters out on Wednesday morning.
That event was the highlight of a very painful past few weeks. The catheters came out just fine, so that chapter in my dialysis treatment is closed.
Since Labor Day, I did some more searching on the internet and found that the pain I was experiencing was something that many other Cipro users experienced. In the posts I read, people were writing that the joint pain stuck around for months before clearing up.Yikes! Months sounded like a long time.
My pain has rotated between my knees and my calves. My foot pain has started to subside, to the point that I wore real shoes to work yesterday for the first time in several weeks. My shoulder is still sore, but some days it feels normal.
Dr. Frock said this wasn't an uncommon reaction and that it should pass. In the meantime, my white blood count rose up to 9, which is in the normal range, but higher than it's been since treatment. I called Dr. Tarantolo just to make sure this wasn't something we needed to react to. I talked to Darcy, one of the cancer nurses and she spoke with Dr. T. He wasn't concerned, and told Darcy to let me know that my body may take some time to get readjusted after taking the Cipro.
So, as I write this lengthy post, today's pain is in my calves. They are a little stiff, but not too bad. Considering I haven't been able to work out for over a month hasn't helped my body either. Jeannie and I resumed our walking this week, and even though it's slow going for me, I think it's helping.
For those of you following this blog, have you had any negative experience with Cipro? I don't wish this on anyone, but if you're willing to share, please leave a comment.
All of this serves as a reminder to me that I've got to find a living kidney donor!
Everything seemed fine with the Cipro, at first. The UTI cleared up within a few days, so I really thought my routine would start returning to normal.
On Wednesday, August 31, I went with a co-worker out to visit a customer. I dressed up for the visit, wearing a pair of dress shoes I wear once or twice a month. Usually I wear these shoes at work, where I'm walking on carpet. When we got to the customer's office, we walked a lot of sidewalks, moving between a couple different buildings. I didn't think anything of it at the time.
The next day my left foot was sore, which I attributed to the shoes. During the afternoon at work, my foot got so sore that I took my shoe off. My foot had swollen up pretty big, so I left my shoe off for the afternoon.
At the same time, I noticed my right shoulder was sore too. Thursday was a dialysis day, and I had my right arm resting on a pillow for four hours. My right arm was pointed in a 45 degree angle, so I wasn't surprised that it was stiff after dialysis was finished. What surprised me was how much it hurt a couple hours after dialysis was over.
By mid-afternoon I was limping around with a bum left foot and my right shoulder was sore to the touch. It seemed like I was falling apart.
Thursday night I soaked my foot and iced my shoulder, both of which provided some temporary relief. By the next morning my foot and shoulder were still sore. I had to wear my sandals to work, because I couldn't fit into any of my shoes. I kept icing my shoulder and I did my best to keep my foot elevated. Nothing seemed to be helping.
In a clear-headed moment, I wondered if there was a connection between the joint pain I was feeling and the Cipro. I did some searching and found some information that would support that. I know, using the internet for medical advice isn't the best way to go, but I wasn't looking for medical advice, as much as I was looking for anyone who had the same experiences.
I called Dr. Konigsberg to see if I could stop taking the Cipro. I spoke with a nurse, and she told me that what I was experiencing was not a typical reaction to the Cipro, but she said it was okay for me to stop taking it.
I made it through the day at work, but my foot was in a lot of pain by the time I got home. Jeannie suggested we got to the ER just to make sure there wasn't something else going on. Great, I thought. Friday night in the ER on Labor Day weekend. It should be an experience!
We got there around 7:45pm, and there was no one waiting ahead of me. In fact, the nurse was out to get me before we were done getting checked in. We went to Bergan which has become a bit of a second home for me, considering all the procedures and visits I've made there in the last year.
Once all my vitals were taken, a nurse practitioner came in to look at my foot. She ordered X-rays and a blood draw. The initial thought was gout. So, we hung out in the ER room. and I got my blood drawn and I got my foot X-rayed. While checking out my foot, the NP wasn't sure about the gout, because I only had pain in one part of my foot, and not the whole foot.
Since there wasn't going to be any magical cures coming from this visit, and since it didn't appear to be broken, the next step was to help me with the pain. I got a shot of morphine and Vicodin, which definitely took the edge off. Did I mention that I wasn't sleeping during the week? I was waking up after about four hours with a lower back pain that kept me awake the rest of the night. The morphine and Vicodin was going to get me some sleep that I dearly needed.
I was also given a prescription for Prednisone, which was supposed to help clear up whatever was trying to happen with my foot. All in all, it wasn't a terrible visit to the ER.
I took it easy over the long weekend, but the pain in my foot and my shoulder were still present. I only had to take the Prednisone for four days, and it was a relatively small dose. The only thing taking my mind off the pain was looking forward to getting my catheters out on Wednesday morning.
That event was the highlight of a very painful past few weeks. The catheters came out just fine, so that chapter in my dialysis treatment is closed.
Since Labor Day, I did some more searching on the internet and found that the pain I was experiencing was something that many other Cipro users experienced. In the posts I read, people were writing that the joint pain stuck around for months before clearing up.Yikes! Months sounded like a long time.
My pain has rotated between my knees and my calves. My foot pain has started to subside, to the point that I wore real shoes to work yesterday for the first time in several weeks. My shoulder is still sore, but some days it feels normal.
Dr. Frock said this wasn't an uncommon reaction and that it should pass. In the meantime, my white blood count rose up to 9, which is in the normal range, but higher than it's been since treatment. I called Dr. Tarantolo just to make sure this wasn't something we needed to react to. I talked to Darcy, one of the cancer nurses and she spoke with Dr. T. He wasn't concerned, and told Darcy to let me know that my body may take some time to get readjusted after taking the Cipro.
So, as I write this lengthy post, today's pain is in my calves. They are a little stiff, but not too bad. Considering I haven't been able to work out for over a month hasn't helped my body either. Jeannie and I resumed our walking this week, and even though it's slow going for me, I think it's helping.
For those of you following this blog, have you had any negative experience with Cipro? I don't wish this on anyone, but if you're willing to share, please leave a comment.
All of this serves as a reminder to me that I've got to find a living kidney donor!
Monday, August 29, 2011
Try This
As I've written several time in this blog, we have a pretty steady routine going with the thrice-weekly dialysis treatments and the every two-month leukemia maintenance treatments. Throw work in to the mix and the once a month trip back to the Quad Cities area to visit family, and we have a pretty full life.
But, just when you think you're dealing with all you can deal with at one time, up pops another little gift. A gift that serves to remind us that we have the capacity to handle much more than we do in our day to day lives.
My reminder was a UTI, and no, that's not the University of Texas International! Okay, there's probably not such a place, but we're only a few days from the start of another college football season.
It's easier to joke about the UTI (seriously, it's a urinary tract infection) today, because I'm taking medicine to get it taken care of. I don't think I could've written with as much jocularity a couple of weeks ago.
I first became acquainted with the UTI on August 14. I was running in the morning, and it seemed like the more I ran, the more it felt like I needed to go to the bathroom. I ended up walking for most of my outing that morning. I hit the bathroom as soon as I got home, and that's when I noticed the lovely burning sensation and a hint of blood in my urine.
Naturally, I did what everyone does in these situations. I went to the internet to get my medical advice. From what I could tell, I didn't have the symptoms for kidney stones, so I went with the UTI. I wasn't freaking out about it, although I didn't care much for the pain I felt each time I used the bathroom. I figured I would call Dr. Frock the next morning and he would be able to prescribe something for me.
What I didn't count on was that Dr. Frock was in Red Oak, Iowa seeing patients. Surely, if I asked the girl that answered the phone in his office to get a message to him, he would call me back, right? Wrong. I didn't hear from him Monday, so when I went to dialysis Tuesday, I asked Angie, my nurse, to give him a call. She reached him right away, and he prescribed Bactrim, once a day for five days. If that didn't do the trick, he wanted me to call a urologist.
I picked up my Bactrim Tuesday and took it as prescribed. The only thing that seemed to get better was that the blood in my urine went away. Otherwise, I still had as much, if not more, pain. So, on Monday, I called the urologist. The soonest I could get an appointment was Friday, so this was going to be a long week of pain.
On Friday I journeyed to the urologist's office, where I got blood drawn from my arm by the nurse, and a surprise prostate exam from the doctor! Dr. Konigsberg prescribed Cipro, twice a day for 10 days. Since starting on this Friday evening, I'm just about pain free.
To be on the safe side, I need to go back in a couple weeks for a follow-up visit, which is going to include a couple procedures. One test will be a CT scan, but the other one is going to be a cystoscopy. He didn't call it that. No, Dr. Konigsberg just told me that they were going to look inside my bladder to make sure everything was okay. Again, using the internet as my source, it sounds like this involves needles going in through places that have never been stuck before. Bogus!
Dr. Frock had tipped me off to this in his monthly visit last week. He said it hurts, but he reassured me I've had worse pain. I'm not sure I buy that!
I'm waiting now for the scheduler to call me to set up the appointment for this day of fun. I expect I'll hear from them today to get a date.
The moral of this story? Don't think it can never get worse, because it always can. At the same time, we're never given anything we can't handle, so like everything that's come before this latest adventure, we make the adjustments and get it taken care of.
The pain associated with the UTI, and the discomfort that follows once you're out of the bathroom, has kept me on the sidelines with my exercise. This afternoon, I'm going to try and work out. If that goes well, I'll run this evening while Jeannie walks. It will feel good to get back to moving again.
But, just when you think you're dealing with all you can deal with at one time, up pops another little gift. A gift that serves to remind us that we have the capacity to handle much more than we do in our day to day lives.
My reminder was a UTI, and no, that's not the University of Texas International! Okay, there's probably not such a place, but we're only a few days from the start of another college football season.
It's easier to joke about the UTI (seriously, it's a urinary tract infection) today, because I'm taking medicine to get it taken care of. I don't think I could've written with as much jocularity a couple of weeks ago.
I first became acquainted with the UTI on August 14. I was running in the morning, and it seemed like the more I ran, the more it felt like I needed to go to the bathroom. I ended up walking for most of my outing that morning. I hit the bathroom as soon as I got home, and that's when I noticed the lovely burning sensation and a hint of blood in my urine.
Naturally, I did what everyone does in these situations. I went to the internet to get my medical advice. From what I could tell, I didn't have the symptoms for kidney stones, so I went with the UTI. I wasn't freaking out about it, although I didn't care much for the pain I felt each time I used the bathroom. I figured I would call Dr. Frock the next morning and he would be able to prescribe something for me.
What I didn't count on was that Dr. Frock was in Red Oak, Iowa seeing patients. Surely, if I asked the girl that answered the phone in his office to get a message to him, he would call me back, right? Wrong. I didn't hear from him Monday, so when I went to dialysis Tuesday, I asked Angie, my nurse, to give him a call. She reached him right away, and he prescribed Bactrim, once a day for five days. If that didn't do the trick, he wanted me to call a urologist.
I picked up my Bactrim Tuesday and took it as prescribed. The only thing that seemed to get better was that the blood in my urine went away. Otherwise, I still had as much, if not more, pain. So, on Monday, I called the urologist. The soonest I could get an appointment was Friday, so this was going to be a long week of pain.
On Friday I journeyed to the urologist's office, where I got blood drawn from my arm by the nurse, and a surprise prostate exam from the doctor! Dr. Konigsberg prescribed Cipro, twice a day for 10 days. Since starting on this Friday evening, I'm just about pain free.
To be on the safe side, I need to go back in a couple weeks for a follow-up visit, which is going to include a couple procedures. One test will be a CT scan, but the other one is going to be a cystoscopy. He didn't call it that. No, Dr. Konigsberg just told me that they were going to look inside my bladder to make sure everything was okay. Again, using the internet as my source, it sounds like this involves needles going in through places that have never been stuck before. Bogus!
Dr. Frock had tipped me off to this in his monthly visit last week. He said it hurts, but he reassured me I've had worse pain. I'm not sure I buy that!
I'm waiting now for the scheduler to call me to set up the appointment for this day of fun. I expect I'll hear from them today to get a date.
The moral of this story? Don't think it can never get worse, because it always can. At the same time, we're never given anything we can't handle, so like everything that's come before this latest adventure, we make the adjustments and get it taken care of.
The pain associated with the UTI, and the discomfort that follows once you're out of the bathroom, has kept me on the sidelines with my exercise. This afternoon, I'm going to try and work out. If that goes well, I'll run this evening while Jeannie walks. It will feel good to get back to moving again.
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