New Strategies

With the new year comes a renewed attempt to get my weight down and get healthy. In talking with Jan, the DCI dietician, I've put together some goals and some new strategies for getting my weight down.

I'm about 20-25 pounds overweight, but sometimes these amounts can be the hardest to take off. The first strategy change is how I handle the times on my own. It's not often, but it seems like when I'm by myself, I eat like I'm going to the chair!

The time after dialysis is also a danger time. Since I don't eat breakfast before dialysis, I'm tempted to eat breakfast and lunch in one setting. This week I limited my breakfast to breakfast. Later in the day I had half of a meal, something bigger than a snack, but smaller than a full meal.

The new strategy says that once I'm done eating my breakfast on dialysis days, I need to move on to something else. Today that something  else is writing.

So, once this post is finished, it will be time to get my half meal ready and get ready for work.

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,

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!

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!

If it's Saturday, it Must Be a Dialysis Day

I'm one of nine people sitting in a chair with tubes running into a catheter or a fistula. I'm the only one who is awake, which I blame on being a morning person. I generally don't do any work on Saturday's, so I spend my computer getting caught up on some of the other blogs I read.

Before they started tapping into my fistula I would write pretty consistently. With the fistula I'm limited to typing with my left hand. It's not a problem, but it does make for slow writing.

I can finally say that going to dialysis three times a week is starting to get old. I'm glad enough for the results I get, but I want to feel like this without spending four hours connected to something that looks like a second cousin to R2D2. To that end, there's been a little movement on the transplant front.

A co-worker has decided that she wants to get tested to see if we're a match. One of my sisters is also giving donation some serious consideration. My sister actually gave me a good picture of what the transplant question looks like from the perspective of a potential donor.

No surprise, the idea of having an organ removed and given over to someone else is a big thing. Generally not something one does on impulse. As she explained it to us, wanting to do this for her brother isn't a huge leap. Of all the factors that make up the decision, that's the easiest one to get behind.

The challenging part is getting behind being off work for 2-3 weeks. My sister is self-employed, so she gets paid when she works and she doesn't when she doesn't. She says that's manageable, which it is, but that's another reason donation isn't done on impulse.

The other factor, the one that I don't know a person will ever get an answer for, is the emotional aspect of giving up a part of your body's infrastructure. Sure, we're  more than the parts that make up our physical being, but from a practical standpoint, it's surgery to remove an organ. Science bumping up against the spiritual.

So, we'll see how this turn out. I want my sister (anyone, actually) to be at peace with their decision. I've made the intellectual case with my sister. She's seen the videos that explain the process for both the donor and the recipient, so while she may have more questions down the road, she's seen enough to start the process of processing.

Fistula Progress

Since coming off the DL, the fistula is doing great. I'm using the medium size needles now with no troubles. The only question now is whether or not we move up to the big boy needles again. All indications are that I can dialyze with the medium needles and do just fine as far as the quality of the dialysis goes.

That's good news for me, because I got the okay to make another appointment to have the catheter removed from my chest. I'm going to make that call later today.

Since the last infiltration of my fistula, all the nurses and techs have been treating me with kid gloves. They are careful about moving me along too quickly again. Of course, that statement makes the assumption that they moved me along too quickly the first time around. I would say that they didn't.

I say that because I learned the other day that my fistula is shallow. That means that when faced with a challenge of drawing blood out of the fistula, the person doing the sticking needs to consider a different location or try to move the needle further up the fistula, as opposed to trying to stick the needle deeper into it. That was the foundation for the last infiltration.

The needle was in fine, but when the tech got distracted, she lost her focus and pushed the needle in further than it needed to go. Had she been paying attention, she would've seen that she had hit the bulls-eye. It's water under the bridge now, but I'm going to keep reminding everyone about my shallow fistula.

I learned something else during Saturday's dialysis session. Apparently, the dialysis machines can be programmed to pull fluid gradually instead of pulling an equal amount of fluid each hour. I think most people set the machine up for the latter scenario.

The last two times that Pam has put me on, however, she told me that she set the machine up to pull a lesser amount of fluid in the beginning, more in the middle of my time, and then less during the last hour. Both times she ran this profile on me, I was able to make it through the entire session without cramping, which results in me asking to have the machine turned off. As a result, I don't always get the fluid off that we set out to remove for the day.

So, I'm sure this will be another opportunity for me to endear myself to the staff at the clinic. Asking for this profile to be run on me will probably make a couple of the staff mad at me. Too bad!

Race Day 2011

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/

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.

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.

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.

The Working Life

I haven't written much about my work, so I thought I would spend a little time writing about how work works.

The day I crashed back in September, I was sitting at my desk, working along on my list of things to do for the day. I left before saying too much to anyone other than those in offices close by. I heard from my immediate supervisor later in the evening or first thing next morning. Her position was not to worry about anything and focus on getting better.

When dialysis became a definite thing, the first thing I worried about was how this would play at work. I am fortunate in that I can do my work anywhere there's an internet connection, so I knew I had options. My only worry was how those options would be viewed by my boss and my co-workers.

When I went back to work on the Monday after my crash, everyone was glad to see me. Once I got my dialysis schedule, I thought we settled into a pretty good routine. I told the President of our company that I planned on taking work with me to dialysis, because I wanted to be productive. I asked my supervisor for work that I could do while at dialysis, but I never got any response to that. So, being the self-directed guy that I am, I started looking at my daily work and looking at what I could take with me to dialysis.

I've been working 2-3 hours each dialysis day, generally, ever since. I like it, because it makes the time go by quicker in the chair, and it keeps me up to date on my work. I get an internet connection through my cell phone, and armed with a laptop, I can keep up with my work and when I need to access my desktop at work, I can do that too.

As I said, I think the President of our company is happy with me being able to continue to be productive. I haven't missed any deadlines with my work, and I'm able to help people as I always did. So, while most of my fellow dialysis patients sleep or watch TV, I plow through my work.

Does this mean everything is rosy at work? Optimist that I am, I know that the people who are important to my work are fine with what's happening. In fact, I can only think of one person who has struggled with my new schedule and work habits. I had to remind this person that I would be happy to switch places with them, if they thought I was living a life of ease.

There's no question that my kidney problems have caused a lot of people to make adjustments at work, but I guarantee you that no one on my job has had to make the adjustments that Jeannie and I have had to make in all of this. Between the two fights I've had to take on with my health, I've discovered that people and situations that used to make me nervous or anxious, don't have the same impact on me.

When I feel a little fear rising up inside of me, I quickly review what I've been through, and what I have to look forward to going through, and the fears tend to subside. I'm lucky to work where 99% of my co-workers are supportive and appreciative of my willingness to keep moving forward. Looking at that percentage just now, serves as another reminder to me that one person who swims against the current isn't worth the stress or worry that they try to cause.

How about those of you out there fighting the good fight with your kidney issues? Are some of you able to continue to work? I feel so lucky to work at the kind of job where I'm able to work remotely, and just as lucky to have a company that gives me the ability to do that.

Work gives me a sense of purpose, and once we established a good routine with the dialysis and the other visits to doctors and hospitals, the work gets done like it always did. I"m actually looking to do more, which is very exciting.

So, while I wait for the news that someone is willing to get tested and donate a kidney, I'm going to keep doing my work. As the saying goes, "those that matter don't mind, and those that mind don't matter."

It took a lot to happen before I got my head around this, but life is definitely too short.

No Transplant News . . . .Yet

Despite staring at my phone most of the day yesterday, and doing my best to will it to send me a call from UNMC, there was no call. There could be any number of reasons for this, so I'm not going to lose any sleep over the lack of a call. Just the same, it's a bummer to think that I will probably have to wait until Monday to hear anything.

With this being a dialysis day, I have time to continue willing my phone to ring. It's not working out yet, but it's not for a lack of trying.

Receiving a treatment on the day before dialysis usually means there's lots of fluid to come off. Today was no exception. I came in at 90.6 kg, which is pretty high for me these days. I'm hoping to leave this morning around 87.5. I'll need to stay running the entire four hours to hit that goal. Lately, that's been hard to do, because my feet tend to cramp up after around three hours. I made it all the way through on Thursday, which was a first for June. Things are going well so far. I'm two hours in and I'm better than halfway to my goal.

In yesterday's post, I wrote that it seemed like since dialysis started, Jeannie and I haven't been out and about too much. Thanks to an awesome wedding anniversary gift from her son, Paul, Jeannie and I went to see the production of "Wicked" last night.

This was my first big-time musical experience. I was a sound and light guy for our high school musicals, but that was a long time ago, and clearly not the same thing. The whole experience was great. We had decent seats and "Wicked" was fabulous.

When the curtain came down for the final time of the night, I had tears rolling down my cheeks. I always choke up a bit after watching performers come out for their bows at the conclusion of a performance. It's moving to me to feel the appreciation coming from the crowd, when it's clear that the performers brought their A-game to the evening's show.

I'm not so sure there weren't other factors that moved me to tears last night. It was great to be doing something normal for a change on a Friday night. Since Saturday is a dialysis day, I try to get to bed by 9pm, to make sure I'm well-rested for the next day's session. It was almost midnight when we got home last night, so this was a big break from the norm. It was worth the lack of sleep just to be able to get out without thinking about kidneys, CLL, and transplant phone calls. I managed to not think about not getting the call, and was able to lose myself in the moment. A great moment.

So, the waiting continues for the call.

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.

The Intial Dialysis Sessions

Once the wreckage from my September train wreck was cleared away, it was time to start dialysis. I had myself convinced that dialysis was a death sentence. Even with all the drama surrounding my ER visit and the pronouncement that dialysis was necessary, I held out hope that it would not be permanent. I was encouraged by the fact that the day I got my catheter, I did not get a fistula. Maybe the catheter would just be part of a short term plan to help my kidneys get better.

I had dialysis within a few hours of getting my catheter. My first session was in my room. The first dialysis nurse did her best to scare the crap out of me about how delicate my newly placed catheter was. If I wasn't careful and bumped it, I could bleed to death in four minutes. Really? Four minutes? That was all my wife needed to hear to plant fear in her mind! She has been reluctant to get too close to me on that side of me for fear of hurting me.

The catheter is a pretty scary looking thing, dangling out of the right side of my chest like it does. It's just a short drive to my heart, which is scary enough, I guess, but I was having trouble believing I could bleed out so quickly if it got bumped.

The nurses wheeled me down to Bergan's dialysis area for Friday's dialysis session. I wasn't feeling particularly well still. My stomach was doing flip-flops whenever I ate and even a bit during dialysis. Dr. Frock told me I would probably notice a pretty drastic improvement in how I felt after a couple weeks of dialysis. He also told me that I would need dialysis three days a week. Three days a week?? What about work? What about traveling? In just a matter of a couple of days, this train wreck was going to change my life in ways I hadn't considered.

Knowing I was a pretty stubborn guy, Dr. Frock would not approve my release from the hospital until I had a schedule established with a dialysis clinic. So, on Friday, the Bergan social worker tried to put something together for us. We agreed on a clinic and my preferred days, but I was at the mercy of the clinic and their available times. I was also at the mercy of the schedulers, who only worked until 2:30pm on Fridays.

By 4pm Friday it was clear that I wouldn't be set up at a clinic. I was going to be stuck in the hospital for the weekend. Bogus!

Saturday morning was my third dialysis day. This time my session was in my room again. It was an early session, so I was happy to get it over with, so I could watch Nebraska play football that afternoon without any dialysis distractions. During my dialysis session Dr. Frock popped in to see how I was doing. I told him we struck out at getting set up at a clinic, but we had a plan. We just needed to hear back from the clinic.

Surprisingly, Dr. Frock said there was no reason to stay cooped up in the hospital. He realized everyone did their part to get me setup, and he didn't think it was right that I be stuck in the hospital just because we hadn't heard from the dialysis clinic. I was going home.

Now, anyone who has stayed in a hospital knows, getting out isn't always the fastest process! I had plenty of time to get dressed, pack up all the beautiful flowers I received, and text/e-mail family to let them know I was going home. After almost two hours, all the paperwork was in place and I was on the way home.

I was leaving the hospital in much better shape than I was when I went in. That was fine by me! I was also armed with some new prescriptions and a resolve to make a three-day per week dialysis schedule work with work.

Time to Talk About the Kidneys

So, once the leukemia treatments wrapped up in the spring of 2010, my creatinine number was still too high. I started seeing Dr. Frock monthly, with each visit showing the same thing. My kidney function was around 15%, and it wasn't getting better.

I was getting shots of Aranesp to help get my red blood count back up, but clearly my kidneys weren't helping with this. Another kidney biopsy revealed that something else was happening with my kidneys. I had Berger's disease, also known as IGA nephropathy. According to the pathologist that read this biopsy, I probably had this going on for 20-25 years.

Dr. Frock mentioned IGA prior to the beginning of my leukemia treatment. To his credit, he did a good job of discussing my situation with Dr. Tarantolo, so both doctors were in the loop on what I was getting for treatment. Dr. Frock was hoping that the leukemia was driving my issues, so we didn't focus too much on the IGA. At least not until after the treatments were finished.

Once it became clearer that I had the double whammy bonus of two things wrong with me, I heard the dreaded D-word. It was time to start thinking about dialysis. My heart sank when Dr. Frock mentioned this for the first time. Dialysis sounded like a death sentence to me at the time. I was too young, and in too good of shape to need dialysis. The stubborn part of my nature dismissed the need for dialysis. I was sure that my kidneys were just slow to respond to the leukemia treatments.

Again, Dr. Frock was patient with my stubborn ways, and agreed to hold off on pushing the dialysis. In the meantime, I started to make some changes in my diet. Treatment, while easy enough not to disrupt too much of my regular routine, did slow me down when it came to my exercise. The decadron I got each time also made me eat like I was going to the electric chair! So, when I got home from treatments each Friday afternoon, I was like the Tazmanian Devil rifling through the cupboards for food! Once treatments were done, I got back to better eating habits.

While in the hospital for the kidney biopsy, we met a dietician who gave us some good information on a renal diet. Armed with this information, I thought this would be another change I could make to help my kidneys.

By September of 2010 my kidney function had dropped to 11 or 12%. Dr. Frock brought up dialysis again, which I again waved off. I did say okay to giving my name and number to REI, so they could set up a time to educate us on dialysis. This I agreed to, but when the call came to set up an appointment, I didn't pickup, and I never returned the call.

I did agree to letting Dr. Frock prescribe blood pressure medicine for me. My bp was not improving either, so this was something else I could do help my kidneys.

September was my first month of maintenance treatments, and the plan was for me to come in once each week for four weeks. As I mentioned in a previous post, we changed that schedule going forward to a once every eight weeks program.

My first maintenance treatment was tougher than I remembered. I didn't feel as good afterwards like I did back during the initial treatments. I thought it was because there was less leukemia in me. Dr. Tarantolo corrected my thinking there, and prescribed compazine for me to take if I didn't feel well following treatment. I had taken this during my initial treatments, from time to time without any problems, so it seemed like a good idea.

What I didn't see coming was the train wreck about to take place in my body. I'll pick the story up there in my next post.