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!

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!

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.

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!

A Little CLL Time

My CLL gets a little love today. It hates it when the kidneys get all the attention! Today is a CLL maintenance treatment day, so that means a visit with Dr. Tarantolo and the very cool nurses at the Midwest Cancer Center. It takes a special nurse to work in a cancer center, I think. To remain positive among the people with various types of cancer says a lot about the kind of person who chooses to be a nurse in a cancer ward, or in a cancer clinic like this one.

Right before I started writing this post, one of the nurses came around with a tray of cookies for us. Simple things, right? Just a few minutes ago, Terri, the person who handles the phones and does the scheduling for the doctors, just put a blanket around a woman who was curled up on a recliner while her husband received his treatment. Another simple thing, but all those simple things add up to great care.

My visit with Dr. Tarantolo went really well today. The visits are always good, but today was one of those days when he settled into his chair and seemed as if he was in the mood to chat. We talked about my Bix run from last week, and then he asked what the latest was with my transplant.

He supports me getting a live donor, because the dosage of anti-rejection meds will be lower, which will mean a less likely chance of kicking up my leukemia. Even if my leukemia did reappear, he was confident that he could treat it without damaging my transplanted kidney.

I had to laugh when he described himself as an "academic" doctor today. He was telling me about his conversation with Dr. Miles back in May, and he said he can't believe the academic doctors at UNMC aren't pushing to get me a transplant, given my unique combination of CLL and kidney disease.

Even though he describes himself as an academic doctor, I can say that Dr. Tarantolo is not just an academic. He is committed to helping his patients live a full life. That he is curious and also committed to learning sure isn't a bad thing. Some doctors are content to teach, but it's clear to me that Dr. Tarantolo is passionate about learning and applying that knowledge on his patients.

Since my leukemia is in remission, Dr. T says we can put a little more time in between visits. So, instead of coming back at the beginning of October, I'm coming back at the end of October. 12 weeks out instead of eight weeks. Another good sign of progress.

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.

Doctor Visits

Some days the cynical part of me takes control and starts writing. Today is one of those days.

Let's set the scene. It's a dialysis day. Most of the patients here with me are either sleeping or watching TV. Some do both at the same time!

With all of this activity going on, guess who walks in? A doctor or a nurse practitioner. From what I understand, Medicare requires them to make a monthly visit to see their dialysis patients. It doesn't matter if there are no changes to report or if the patient has any questions. The doctor appears at a convenient day for them to make their rounds. The whole event can take anywhere from 10 - 15 minutes and then like a tornado disappearing back into the clouds, the doctor (or the nurse practitioner) is gone.

While I can't say that I've heard all the conversations that take place, I can tell you what happens when Dr. Frock is in the house to visit his patients. He's got three of us here on Tuesday, Thursday, and Saturday. He generally starts with me.

He gets my latest lab results, which could be 2-4 weeks old, depending on the timing of his visit. He goes over the results, usually in a less detailed manner than the dietician does the first day the results are back in, and then he asks some questions about how I'm feeling, he listens to my heart and lungs, and then rolls on over to my neighbor.

Sometimes, I get bonus coverage, and he'll listen to my fistula (since my fistula has been on the DL for a couple months, he's done this the last two times he's visited) and he'll check my legs for swelling.

Each month I get an Explanation of Benefits report from the insurance company, and there's his visit, listed along with the other items on the report. Any guesses on what the charges are for these visits? Go on, guess. I'll wait.

Since this may differ between patients and insurance carriers, let's just say that the original charge is in the $400 range, but thanks to my insurance carrier, Dr. Frock gets about $150 less than that.

Now, I don't begrudge anyone for making their living. I have grown to respect the care and expertise I've received from the doctors I've encountered. So, before anyone thinks I think the doctors should make these visits for nothing, sit back down in your chair.

If these doctor visits are a Medicare requirement, it would seem to me that a boatload of money could be saved by removing the requirement that these visits have to take place monthly. I don't need to see my doctor monthly. Certainly not for all the information we share. There's no real value in that for me as a patient.

The clinic nurses look out for their patients pretty darn good. When we need something that requires a doctor's approval or input, there's never any hesitation on the staff's part to make contact. If I feel like
I need some questions answered, I could always call Dr. Frock and ask if he could come to the clinic for a visit. A scheduled visit would be more useful for the doctor and the patient.

I know, the cynic in me is probably missing the bigger picture in these visits. On the other hand, with no shortage of patients on dialysis, I don't think that nephrologists are going to be wondering where their next meal is coming from for quite some time.

It should also be clear here that I think Dr. Frock is a fine doctor. I enjoy talking with him, but I lke talking to lots of people. That doesn't mean I want to get a bill for each conversation.

That's my rant for the day. It's something that has always gnawed at me, so I needed to get this off my chest. I'm better now. Do any of the other dialysis patients that may look in on this blog ever wonder about these doctor visits?

Speaking of doctor visits, and taking a much less cynical tone, I'm scheduled to see Dr. Feldhaus today. I'm hoping to hear him give me the all clear, so the nurses can start back to using my fistula. Getting the fistula off the DL  means that I'm closer to getting the catheter removed from my chest. That will be a red letter day for sure!

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.

Frightening the Family

As anyone who goes through an experience with any kind of illness will tell you, it is critical to have a good support system surrounding you. I have that, and it has made this whole process much easier to go through.

I've written before about my wife, but it goes without saying that without her in this with me, I would be floundering.

My family has been great too, but it's clearer to me now that all of this stuff is a bit frightening to them. I send out updates to everyone as things happen, because we're scattered all over the place. E-mail updates seemed to make the most sense.

I usually hear from a few people with every update. Words of encouragement usually, but sometimes they have more questions too, so I like being able to answer those for them.

When the whole transplant thing became more realistic, and I was writing about this to them, the replies became a little less frequent. Admittedly, I may have caused this, because in each of the updates I was explaining how "easy" it was to donate, and in each of the transplant updates, I encouraged them to get tested to see if we would be a match.

I know how big of a request it is to ask a family member to donate a kidney. My mistake in all of this has been to discuss it in a way that makes it sound like it's a walk in the park. Part of that comes from us getting more comfortable with the whole transplant process, to the extent that it really doesn't seem like a big deal. The other reason I took such a positive approach to explaining the process, was that I didn't want to make it sound like some crazy out of this world thing that looks like a last resort.

So, along the way, I feel like I did the very thing I was trying to avoid. I've since sent out an update that was supposed to help people feel more at ease with saying no, because I don't want anyone feeling guilty about not wanting to donate, or not being comfortable with the whole donation idea.

The other thing I noticed in my updates and during those times when we would be gathered together for a birthday celebration or something was that my kidneys always seemed to be the center of the conversations I was having. There I was, letting the kidney disease become the thing that defined me to my family.

With all that in mind, I was absolutely ecstatic when we got together with family on Friday, and my kidneys never came up. It felt like a breath of fresh air, and it showed everyone that I wasn't going to follow them around and nag them about whether or not they wanted to get tested. Maybe it was a missed opportunity to recruit, but there will be other times for that, and maybe, the space will encourage some to ask more questions. We'll see.

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.

Fistula Follow-up

I had my follow-up appointment with Dr. Feldhaus on Thursday afternoon. He was pleased with how everything sounded, and as I went through my list of questions with him, I got a better explanation of what he actually did last week during surgery.

First, it turned out that my fistula wasn't completely trashed. He was able to clear the clot and open the fistula up. In doing that, however, he had to cut away an area where the vein and artery are joined together. Rather than stretch the two so tightly to join them, Dr. Feldhaus used a small piece of graft material to join the vein and artery together. This allowed the rest of my fistula to work as before.

I found this to be great news, because I thought that my fistula was doing really well, at least before it was infiltrated. Which brought me to the last question on my list for Dr. Feldhaus.

Was my fistula damaged by a careless tech, or was it still not developed? He didn't beat around the bush with his answer. He said he and his fellow surgeons see this kind of thing all the time. Now, he didn't think anyone deliberately did anything to my arm, but he did tell me he hears stories all the time about this kind of thing happening, and he sees the results.

I go back to see Dr. Feldhaus in a month. Hopefully by that time, the last little bit of swelling will be gone, and he will give the okay for the clinic to begin using my arm again for dialysis. Ultimately, that's the thing that matters most to me. Starting back with my fistula means we're getting closer to removing the catheter.

Doubleheader Follow-up

I'm back to typing with one hand, following the surgical work done on my fistula. Unfortunately, the fistula could not be repaired, so a graft was placed in my arm. The surgery went well. I think I tolerate the whole process pretty well. I was pretty lethargic the day after the surgery, but I figure that's due to the anesthesia and the pain medicine they gave me. They gave me a script for oxycodone, but I only took two of those since the surgery. I won't need anymore of those.

To help with the swelling in my arm, I'm taking cephalexin twice a day. I've also been resting, keeping my arm elevated. The key is to get my arm  healed, so I can do my dialysis in my arm, and get rid of the catheter in my chest.

While I was relaxing yesterday, I got the call from Holly at UNMC, telling me that the transplant team met again, with Dr. Morris present, to discuss my case. Dr. Morris is on board, with the condition that I have a living donor.

It's time to go to work and get some potential donors lined up to be tested. Way back at the beginning of this process, Jeannie said she had a feeling I would be getting a transplant in 2011. She may turn out to be right about that.

Doubleheader Day

No more butchering song lyrics, at least not with this post!

I'm in dialysis earlier than normal today, because it's doubleheader day. Once I finish with dialysis, I go home for a few minutes and then it's off to Bergan for some repair work on my fistula. Regular readers will remember that my fistula was infiltrated by one of the techs a few weeks back. Well, today, after a couple of reschedules, Dr. Feldhaus is going to go in and either clear the clots and widen the fistula, or he will place a graft in my arm to replace the fistula. I don't know that I have a preference for what he does. I just want to get back to using my arm for dialysis instead of the catheters.

Doubleheader day means that I didn't enjoy a slice of bread before going to dialysis as I usually do. It also means that I can't enjoy any ice chips while I'm in the chair. To prepare for this afternoon's event, I have to be empty.

Since it's Thursday, I'm hoping the UNMC transplant team will discuss my case today, and that Dr. Morris will be in the room for the conversation. That should give me the final answer on whether or not I'll be able to proceed with the transplant.

Before signing off this morning, I'm curious about something.

It's easy to assume that the things we're going through in life are unique to us. The reality, at least the reality I've encountered over the years, is that many of us go through the same experiences in our lifetime. With that in mind, how many of you reading this blog are going through kidney issues? I can tell you that sharing the experience, and realizing that there are others dealing with the same questions and concerns, helps make the whole thing a little easier to handle.

Thanks in advance for sharing!

I Got the News Today, Oh Boy!

I don't know why all these song lyrics are coming out of me lately, but they are, so I"m going to go with it.

I actually got the news yesterday. Holly called me to say that I had gotten great marks on all my evaluations. She said that Dr. Miles felt it was best for me to proceed with the transplant, provided I had a living donor. That's my condition for this to move forward.

The other shoe in this conversation is that Dr. Morris was not at the team meeting, so his voice was not a part of the discussion. Naturally, I had questions. First and foremost, was his voice able to stop this process? Holly couldn't answer that, which I understood, but it was a question I wanted her to take back and get answered for me. There's no reason for me to start the hardcore solicitation of potential living donors if I haven't cleared all the hurdles in the evaluation process.

Holly was going to ask Dr. Miles if he had any idea of how Dr, Morris viewed my case, and whether or not the two were in agreement on my proceeding under the condition that I have a live donor. Hopefully, I'll learn that today, but I'm prepared to wait until Friday before I know for sure.

Now, I still need to visit with the UNMC Social Worker next Wednesday, so I would be waiting for the "official" acceptance and eligibility letter until the end of the month anyway. But, since I don't expect to be tripped up by the Social Worker, I think it's safe to say that the medical hurdle is the one that will pave the way for me to begin serious living donor recruitment.

As the eternal optimist, I'm pleased with the news I got yesterday from Holly. The additional waiting goes with the territory, I guess, so there's no sense in getting worked up about it.

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.

Maintenance

I'm hooked up and receiving my maintenance treatment of Rituxan.. We met with the Nurse Practioner and Dr. Tarantolo this morning. Dr. T gave us some more thoughts on how the CLL would behave with the anti-rejection meds from a transplant.

He believes that one of the drugs I'll get will suppress the CLL. I believe he was talking about Ropamune. He agreed there are risks associated with the transplant, but he thought those were of a low probability. He's going to call Dr. Tim Call at the Mayo Clinic, a doctor who specializes in CLL, to see if he has access to any data on CLL patients getting kidney transplants.

The benadryl is kicking in. It's all a part of the pre-med cocktail I get before the Rituxan begins to flow. I'm plenty relaxed now, making spelling errors to beat the band! My typing is about a step or two behind my thoughts.

Ethel is taking care of me this morning. She just brought over some wipes that they use to remove adhesive marks left on the skin. She wiped off my left arm and then left me a wipe to use on my right arm.

While waiting for Dr. Tarantolo this morning, I was thinking about our appointments before treatment and all the kidney issues. He used to ask me what concerts I would be going to, and we would talk about those.  Since dialysis began, we really haven't done much in the way of traveling or taking in any concerts.  It may not be fair to blame all of this inactivity on dialysis, there's no question that it changes things.

We may be stopping treatments soon too. Since the treatments aren't doing anything positive for my kidneys, and that was the main reason Dr. T started me on treatments, he may just go back to monitoring my situation. That would be great!

Monday's PET scan was clean as a whistle, so that's more good news! Now, all we need is the phone call from Holly at UNMC. Let's get moving on the transplant!

The Waiting is the Hardest Part

With apologies to Tom Petty, there's no question that the waiting can make a person crazy. Although work is busy, there just seems to be enough time to go have this crazy conversation with myself. Is a transplant the right thing to do? Am I trading away a longer life with dialysis for a potentially shorter life with a new kidney?

Sitting here and writing this now, I feel like I know the right answer to this dilemma. There's nothing that says I would experience what the two cases in France experienced. Those two people were older, and I don't know how severe their CLL was when it made its comeback. I'm healthy and getting healthier. That has to be something in my favor, right?

There are no guarantees. There are so many things that could happen that are out of my control which could cut my life short, none of which would have nothing to do with my current health situation. All I can do is keep a handle on the things I can control and make sure I'm giving myself every chance to succeed. That's something I used to tell my high school bowlers. The stakes are higher in this case, but that's still a true statement.

I'm fortunate to have people around me who are willing to lay it all out for me. I tend to maybe dwell on the positives too much, when I should be paying closer attention to the risks. I've always thought of myself as a bit of a coward, so I think all of this must be causing me to evolve.

Tomorrow is my appointment with Dr. Tarantolo. I'm looking forward to hearing his take on this. I should also get a call from Holly tomorrow too. It's going to be a big news day.

Another Day, Another Test

I guess that one of the great things about having two diseases fighting for attention in my body is that there's never a shortage of tests. The CLL gets the attention this week.

Yesterday I had a PET scan to see if all the leukemia cells are still out of my body. I'm confident that the results will look the same as the scan that was done last April. The PET scan is a fairly easy test to endure. I got to the imaging office a few minutes early for my 7:30am appointment.

After going through the routine process of getting my insurance cards scanned, I sat and waited for my time to be taken back into the exam room. Jackie took me back, got me situated, drew my blood, and placed the IV in my left arm. The blood draw went without a hitch, so once the IV was placed, I sat for a few minutes before I got the radioactive stuff shot in to the IV.

Armed with my book, I sat in the chair and waited the required two hours to let the radioactive material flow through me. While I waited, Heather, one of the nurses normally upstairs at the cancer center, came down to help out with the crew at the imaging center. It's always nice to see a friendly face.

When it was time for me to go into the X-ray room, Matt came to get me. It was time for the test. The PET scan machine looks a lot like the CT scan equipment. I"m not so sure it's not the same thing that is able to be used for both tests. My job with this test was pretty simple. Lay on the track, keep my arms over my head, and be still. Piece of cake.

The test took about 25 minutes, as I was transported through the scanner, out the other side, and then back through again. It's not a particularly noisy test, so I was able to listen to the radio that was playing in the room. Once the test was over, I got up and went back to the little exam room to wait for confirmation that the pictures all looked good, and then I was out the door.

Another day, another test. Friday, it's back in for another maintenance treatment.

Kidney Transplant Evaluation - Day 2

The second day of evaluations was interesting. Generally speaking it was a more positive day than our first day. Not that day one wasn't a positive experience, but as they say, you remember the negative sometimes more than you do the positive. The words from Dr. Morris are still lurking in the back of my mind, but I'm getting a better handle on that now too.

One of the things Dr. Morris kept trying to get across to me was that transplant is not a cure. I remembered that yesterday, and I fully agree with that. When I get a new kidney, I'm still going to be a guy with IGA nephropathy. A new kidney won't change that. But, I'll be a lot smarter about this, having gone through what I've gone through since September. If they put a new kidney in me, I will care for that thing so well, I will get the maximum life it has to offer me.

So, armed with that attitude, Jeannie and I arrived at UNMC around 7:15am, and checked in for my ultrasound. We ended up in the wrong place, but while I was there I was able to get my second lab done. It was a good mistake and I was glad to get that out of the way right away. We were guided down to the right place for the ultrasound, so we ended up being there on time.

The ultrasound was no big deal, but I was glad that the gel was warm and not cold. It's the little things! The tech doing the ultrasound was chatty, and she explained what was happening on the monitor. The grainy black and white image was hard for me to focus on, but she was happy with the pictures she got.

Since I had to fast before this test, and I had to eat before 9am to prepare for the afternoon's stress test, we headed up to the cafeteria to eat breakfast. From there is was on to two consultations.

The first was with a nutritional person. Her name was Meghan, and she must have been an intern. She told us she was hoping to get a job after her UNMC experience ended. She had lots of good things to say about my lab results.They were the best she had seen that week, and it was her opinion that I was in good shape for a transplant.

Our next stop was with a staff psychiatrist. Dr. Keim and I talked for about an hour, and I was able to share my thoughts on Wednesday conversation with Dr. Morris. We talked on a variety of topics, and when we were finished she told me that she would speak in favor of the transplant when everyone got together to discuss my case next week.

My final stop for the day was the Heart Center. I had an echo-cardiogram and then a stress test. This was wild. The stress test is medically induce with a couple different drugs. First off, they got my heart beating so loud it felt like it was going to jump out of my chest. Then they added another drug that made my heart race like an Indy race car. The pictures they got were pretty awesome. At least they were to me.

The doctor that was supervising all of this said that I passed the test. I wasn't worried about that, I guess, but you never know, right? He guided the nurse through injecting the medicine that would slow down my heart, and within about10 minutes or so, my heart rate was back to normal. One of the side affects of all of this was a really bad case of dry mouth. The nurse warned me about this before we started, and she didn't undersell. I had to slam down the water during the rest of the day to finally feel normal.

I noticed this morning I came into dialysis a little bit heavier than normal, but as I write this I can see that most of it was water, and it's coming off just fine.

So now, we wait. The transplant team meets next Thursday to determine if I will be eligible to be placed on the transplant list. I'm hopeful, but given how the conversations went with the doctor and the surgeon, I have to be open to the possibility that they will make me wait.

To pass the time next week, I will get to focus on a Monday PET scan and then a maintenance treatment for the CLL on Friday. In between, I'll have plenty of work to catch up on. It should be a fast week.

Kidney Transplant Evaluation - Day 1

Yesterday was my first day of transplant evaluations. It was a long day, with plenty of ups and downs. I was really looking forward to getting started with the evaluation process, but by the time we wrapped up yesterday afternoon, I wasn't so sure.

The day started out fine. I had a 7:30am appointment to get my blood drawn, get an EKG, and get a chest x-ray. These three things weren't any big deal. I'm in good shape, so I wasn't worried about the outcomes for any of the three tests. I got a kick out of how much blood was drawn. When the girl started on the 10th vial, I was sure there wasn't going to be anymore blood left in me. Turns out there were a couple three more vials left in me. I don't ever remember having that much blood drawn at one time.

Once all three of these tests were finished, Jeannie and I headed to the cafeteria. I had to fast before this blood draw, so I hadn't eaten anything since 9pm the night before. The cafeteria had great food, and I was thinking that this was a good thing. Eventually, Jeannie's going to be eating several meals from here, so I was hoping the food was good.

After we ate, we headed down to our next set of appointments, both related to finance. Our first appointment was with the Pharmacy Financial Counselor to go over the medicines that I would be taking post-transplant and the financial impact that would have. Fortunately, thanks to a good insurance plan, the financial impact will be practically non-existent. This was the perfect lead-in for our next appointment, with another financial counselor, this time to talk about the costs for the transplant and the testing I was going through.

Again, thanks to a good insurance plan, the transplant was not going to be a financial hardship for us. The same is true for any donor that wants to get tested, and if eligible, give me their kidney. All of that is covered too. We were both on cloud nine after hearing both assessments of our insurance situation. I've mentioned this in previous posts, but we are truly blessed with how well the insurance is working out for me.

The two financial discussions were quick. So quick, we ended up with almost 90 minutes to kill before our next appointment. Thinking we would be going without much downtime, I didn't bring anything to read, so I went and tracked down a newspaper from the gift shop.

We were scheduled to join three other families in a conference room to watch a 45-minute video on the transplant process. It was an interesting video, but as it turned out, we watched it over the weekend. I came across the links to the video on the UNMC website a week or so ago, so Jeannie and I watched them over the weekend. It didn't hurt to see them a second time, so we each made some notes with questions to ask the transplant team when we met up with them in the afternoon.

Here's the link to the page with the video: http://www.nebraskamed.com/transplant/kidney/info/process/transplant_evaluation.asp

After lunch we met up with the transplant coordinator. She is an absolute bundle of positive energy. She's doing the perfect job for her personality, and I said again that I couldn't believe how great this was all going. We saw the Nurse Practitioner next, and she asked some more medical history questions, and we had a long chat about my CLL. She was great with us, but she expressed concern about the effects of a transplant on my CLL. Her questions were fair, I answered them the best that I could, and when she was finished, she said she was sure I would have no problem getting a kidney.

The transplant coordinator came back in; Holly is her name, by the way, and we talked some more about how we would get notified when a kidney was available, how the transplant list worked, and when I would be placed on the list. Then, we got our first less than positive visit. We met Dr. Morris.

Dr. Morris came in to see us after finishing a transplant. It was my first meeting with him, so I don't know much about him, but he was pretty blunt with us, which left me a little bit shaken. He wanted me to be able to make an informed consent when it came time to agree with the transplant. So, he hit us with all the negatives related to my transplant candidacy.

The anti-rejection drugs will weaken my immune system, which could lead to a re-occurrence of the CLL. He threw out a scenario where I may not live three years with my transplanted kidney. If that happened, it would not have been a good decision to give up dialysis for something that would kill me. The concern is that a transplanted patient has a higher risk of developing tumors and infections following the transplant. Bad as dialysis is on our lifestyle, it won't kill me.

"CLL is CLL," he said to me, when I tried to explain that the degree or severity of my CLL was such that we thought I would be a good candidate. This comment got under my skin. He lost me after that, which fortunately was near the end of our chat. When he left, Holly came back into the room, and we talked about what had just happened. Looking back on it today, I can't help but think that she was playing good cop to the bad cop played by Dr. Morris.

In the middle of our conversation, Dr. Miles came in to visit. He would be the last person for us to talk with on this first day. I went right to it, recapping what Dr. Morris had said, and how I thought it was hard to imagine him saying "CLL is CLL." I asked Dr. Miles if he believed that there was no degree to this type of disease.

He agreed that there was, but he maintained that the transplant, especially with a cadaver kidney, could cause problems. I told him that I thought that between him and Dr. Tarantolo there should be enough brain power to come up with a plan for how to deal with any post-transplant issues. He agreed with that too. Things were looking up. I don't have a problem with exploring both sides of an issue, as long as we truly explore both sides.

Dr. Miles asked some more questions and then we were done. The first day of evaluations was in the books. I go back tomorrow for round two. More tests and two face to face meetings. I have to go back on the 22nd for one more meeting that couldn't get scheduled during these two days of evaluations. Once that is done, the transplant team will meet to go over my case again and then a final decision will be made to put me on the transplant list or have me wait.

I need to work on seeing if someone will feel inspired to donate a kidney, but I'm going to wait until I hear for certain that I will be eligible.

Getting Fit

Controlling my weight with diet changes worked good for a time. It just wasn't enough, and even though I had dropped quite a bit of weight, I wouldn't have said I was healthy. As I mentioned in the last post, we had two guys from Progressive Fitness come in and talk to us about doing training at our office. In that moment, I decided this was exactly what I needed to finish what I had started.

I met with Matt on their first visit to our offices. We talked about the fitness goals I had, and I think I expressed myself pretty well. I knew what I wanted in terms of a goal weight, and I knew generally that I wanted to feel healthier, which I know is what everyone says,but I had an idea in my head of what healthy was.

So armed with my goals, we setup a plan where I would workout with Matt once a week and then I would spend the other 4-5 days of the week working out on my own. Matt told me later that this was not typically how they did things, but I convinced him that I was motivated to do the work on my own. All I needed was guidance on the best exercises to do for the goals I set for myself. And, I needed to be accountable to someone. This was perfect for me.

Matt turned out to be a great trainer for me. He motivated me to keep going and he wasn't afraid to push me to work harder when he was with me each week. He had a plan for me, and we followed it. He started on developing my core strength first, which got me to be better at balancing myself for the off-balance stuff we did every week. As my core strength came together, we did more muscle/strength training. All the while, mixing up the exercises so my body was kept off guard. THis was critical to the success we had.

When the dust and sweat settled, I had lost close to 40 pounds during the time we trained together. I didn't drop the weight in Biggest Loser numbers, but I had a steady 1-2 pound loss each week. I had some moments where I would plateau or maybe not get in all the workouts I needed for the week, but generally speaking, it was easy to lose the weight and get stronger.

Easy sounds strange, and I feel a little odd using that word to describe what it took to lose the weight and the inches off my body. Going through the workouts wasn't always easy. Matt pushed me as my body got into the routine of working out. I started running about halfway through our time together. That was something I didn't know I could do without hurting my knees, but it turned out to be something I really enjoy.

At some point I want to be able to do for others what Matt did for me. I would love to do personal training. The kidney issue has held me back some on this goal, but I think it's something I can get done. And, it's something I think I would be good at.

During the treatments for the CLL I wasn't able to workout like I had become accustomed to. Once the treatments were finished, I got back into the routine again. Now with dialysis three days a week, I've had to modify my workout schedule again, but I've got a routine that works for me. I'm back to running again, and I'm getting ready to run my third Bix, a 7-mile race held in the Quad Cities. I've got almost two months to get ready, and I'm already further along in my preparation than I was a year ago at this time.

It never occurred to me that CLL and kidney disease was going to stop me from exercising. I've made some modifications, but I'm going to keep pushing. I"m sure the exercise has contributed to how well I've been able to weather the treatments and the dialysis.

Choices

Through all the things that have happened since being first diagnosed with CLL and then learning that my kidneys were failing, I've been fortunate to have made some good choices. I say fortunate, because I've made plenty of bad choices in my life. For some reason, these problems have helped me finally stop the cycle of bad choices. For that, I will always be grateful for these challenges.

The big choice I made after the CLL diagnosis was that I need to drop some weight. Some probably isn't accurate. A lot of weight would probably be more accurate.

A good chunk of my bad choices have centered around food. To this day I still make some bad choices when it comes to food. It's a daily struggle.

A few years before the CLL diagnosis, I tried making better food choices. I joined Jenny Craig, which I will always be thankful for. A co-worker had been going to Jenny Craig, and the transformation his body was going through was nothing short of amazing. I knew this was something I could do too.

My Jenny Craig experience was fantastic. I had a great consultant named Lisa, and she was just what I needed at the time. Let's be honest, Jenny Craig is a business, and like all businesses, the goal is to make money. I'm good with that. Lisa, didn't look at me with dollar signs in her eyes. Hey, it was pretty clear I had an eating problem, and my starting weight of 276 pounds wasn't going to win me any awards for good eating habits.

Instead, I was treated like the person I was. Someone wrestling with their weight and in serious need of some help controlling the portions of food I consumed on a daily basis. Jenny Craig taught me what I needed to learn about portions and along the way, in our weekly conversations, Lisa would quiz me on my eating habits. I learned quite a bit about the things that caused me to dive head first into a bag of potato chips, instead of just eating one serving.

I didn't exercise much while I was on Jenny Craig. That was a mistake, but not one that kept me from dropping the weight I wanted to lose. It took some time, but I eventually got my weight down to a more reasonable 200 pounds. I felt great, and I thought I could take what I learned and live a healthier life.

The Jenny Craig plan has you eating their food for every meal. I bought some fruit and veggies, but the main meals and snacks consisted of Jenny Craig food. As I progressed, Lisa tapered me off the Jenny Craig food. This approach gave me a chance to re-acquaint myself with buying groceries and relying on what I had learned about portion control. At first, I did pretty good, but since I wasn't really exercising too much, I hit a wall and stopped losing.

While it looked like I had my weight loss under control, other parts of my life were not doing so well. I got myself into some financial hot water and had to cut out some expenses. Jenny Craig had to stop, and since I was close to where I wanted to be, I didn't think this would be terrible. After all, even though I wasn't losing weight, I wasn't putting weight on.

Unfortunately, it didn't take too long before my weight started creeping up. The stress happening in the other parts of my life was the excuse I was using, but it was clear that when faced with food choices, I reverted back to some of my old habits. Stress may have triggered some of these choices, but they were still my choices.

Once I got the other areas of my life under control, I knew I needed to take another shot at weight loss. I had put about 25 pounds of my Jenny Craig weight loss back on. I couldn't go back to Jenny Craig. I was embarrassed, and honestly, it wasn't going to be in my budget. I needed something that was less expensive, but would keep me accountable. Once again, fate and timing jumped in and took control.

Some people at work were interested in getting something started with Weight Watchers. I decided to join up, and I was on my way again to losing weight.

I've had people ask me which program is better between these two weight loss systems. Truthfully, both will help a person get it done. I was able to lose weight just fine following each group's philosophies. You have to buy Jenny Craig's food to really get the benefits of what they are doing. There's no question, that can be a big expense. But, with that expense comes the accountability of meeting privately with a consultant every week. I liked the privacy aspect. Lisa held me accountable, but my struggles were kept between us. When I had my victories, she took pictures of my progress and posted them on the wall  along with the other local success stories.

With Weight Watchers, we learned how to manage our food intake through the use of points. I was able to eat "regular" food, and I learned how to convert food without a point value into the Weight Watcher system. By this part of my journey, I wasn't as self-conscious about sharing with a group. These were people I knew, and some had seen the progress I made with Jenny Craig.

So, I lost some more weight, but eventually our group fizzled out and I was back on my own with this whole weight loss thing. I was doing okay this time around. Sure I gained a pound or two sometimes, and then I would lose those pounds, but I wasn't packing on the weight.

When I was diagnosed with CLL, I was doing okay at keeping my weight in check. Not great, mind you, but I was exercising more this time, so it was easier to keep the weight at bay. When Jeannie and I met, I was still doing pretty well, but our early dates involved a lot of eating out. Plus, she is a sensational cook. Those two thing combined to help some extra pounds find their way on to my body.

And, just as it happened with Weight Watchers, work intervened again into my life by inviting a company called Progressive Fitness in to talk with us about our weight loss goals and show us how exercise was the critical component of this whole weight loss thing. I was hooked. I was back up to around 230 pounds, and I didn't want to weigh anymore. I signed up to have them help me.

I'll share that experience in the next post.

Recalibrated

I've had time to let go of being angry about the fistula infiltration. I was supposed to go in this afternoon and see Dr. Feldhaus, the surgeon who placed the fistula back in December,  but he had a couple emergency surgeries which caused him to cancel our appointment. We're rescheduled for next Thursday afternoon.

I'm anxious to see him, because I'd like his take on my fistula and to determine if it needs to be opened up. While I'm with him I may ask him to draw a map on my arm, so the staff at the dialysis clinic can see where to stick me! I swear I wouldn't wash my arm for a week if he would do that.

So, while my catheter gets a stay from being yanked out, I'm focusing on some other upcoming appointments. I start pre-transplant evaluations next Wednesday. I'm pretty stoked about this.

Dr. Tarantolo has been a great advocate for me, calling the head of the transplant department on my behalf and giving him the lowdown on my leukemia. Even though my leukemia is in remission, there's a worry that a transplant will cause the disease to manifest again. It's possible, but Dr. Tarantolo, thinks the odds are very slim, and in the meantime, the transplant will increase my quality of life for many years. The good outweighs the potential problems in this case.

The evaluation process will involve three days of outpatient testing and consultations with the transplant team. I'll be poked, stress-tested, interviewed by a psychiatrist, and filled with so much knowledge that my head will probably explode. I can't wait.

I don't know why the thought of going through the transplant doesn't scare me. It would be the biggest surgery I've ever undergone, but then, I've never had any real surgery experience. Maybe once this is over I'll think differently, but for now I'm comfortable with the coming attractions. Even though dialysis is not a hardship and we've made the adjustments, it would be nice to get back to a life where three trips a week to dialysis wasn't part of my lifestyle.

In between evaluation sessions, I'll be getting a PET scan and another maintenance treatment, so neither ailment will be lacking for attention next month.

With my attitude re-calibrated back to its positive state, I'm ready to experience the evaluation process.

Attitude Test

I believe we are always tested. It could be in our work, it could be at home, or it could be with our health. I've always believed that how we face our challenges matter more than the challenges themselves. To date, I feel like I've handled the health tests pretty well. Certainly better than some of the other tests I've faced!

Dialysis with the catheter was fairly uncomplicated, and the adjustments I needed to make with the catheter hanging from my chest weren't the end of the world. Back in December I had a fistula placed. This was a pretty cool experience, and in the weeks following the placement, it was quite the show and tell item with my friends and family!

The fistula is a merging of an artery with a vein.That merger created a buzz within my arm that people are either fascinated by or uncomfortable with. As it developed, the buzzing was more prominent, a good sign that it was strong and going to be great for dialysis when the time came to tap into it. The official term for this buzzing is "the thrill."

Once I cleared all the checks from the surgeon who placed it for me, we were ready to give it a whirl. The staff at the clinic were looking forward to using it too. It was the beginning of the process of getting the catheters removed.

They start you out slow, with a small needle, and gradually work their way up to a bigger needle. All the while, the fistula is still maturing. The plan would be that once I used each needle three times in a row with no drama, I could move to the next size needle. Three more times with no drama, and we move up to the big boy needle. Running good with the big boy needle means make an appointment with the surgeon, because the catheter is on its way out.

Well, as we know, things don't always go as we plan them. The first time the tech tried to access the fistula it infiltrated. That's bad, because it means the needle went through the fistula. My first clue that something was wrong that day was the tech saying, "oh crap." Trust me, this is not something you want to hear from someone sticking a needle into you. In less than the time it took to say "oh crap," my arm swelled up, giving me an arm like Popeye! This wasn't good.

With that, I was hooked up to the catheters. The debut of my fistula was not going to be on this day. The nurses and techs were all nice and supportive. "This happens" is what they all said. Initially, I was down about what happened, but I had to trust the expertise of the people around me, so I accepted that this kind of thing truly did happen, and went to work on getting the swelling down on my arm.

It took almost a month before the selling and bruising cleared up enough for the second attempt. On that second attempt, a different tech tapped into my fistula. Eureka! It worked. I was back in business.

I made it through the small needle with no problems for my required three times. It was time to graduate to the medium size needle. This move was also successful, so three more turns at the trough with the medium needle, and I would graduate to the big boy needle.

The first time with the big boy needle wasn't very productive. There was no infiltration, but there was also no blood. I knew I had blood in me, but I wasn't getting poked in the right part of the fistula to do the deed. So, back to the medium size needles for a few more times. The medium needle continued to work just fine.

One of the techs thought that maybe things would go better if I had a fistula gram to make sure everything with my fistula was fine. The main thing was to make sure it hadn't narrowed or clotted. So, I got my appointment for a Friday afternoon and had my fistula examined. The fistula got great reviews from the surgeon who looked me over, and I was sent on my way, confident that the next time they tried to use the big boy needle, everything would go well.

It did. I cruised through my three swings with the big boy needle. I may have even gone a few extra times just for good measure. Finally, I got the okay to make my appointment to have the catheter removed. May 25 was going to be independence day.

I came into dialysis on May 10 excited about the possibilities of washing my hair in the shower without a cape and a towel draped over my shirt to keep the catheter dry. I settled in to my chair, anticipating another smooth day of dialysis. The first needle went in just fine. As the tech was getting ready to start the second needle, some of the other staff were talking with one of the other patients across the way.

There was some laughter, and one of the other techs said something to the tech that was working on my arm, and as the second needle was going in just fine, the tech's ears perked up and she gave one more push into my arm with the needle and I felt it happen.

It was a sting in a place where there isn't supposed to be any pain. I looked down and saw the area around the needle start to swell. Another infiltration. There was no "oh crap" this time. I don't remember what, if anything, was said. All I knew was that my goal of getting the catheter removed was fading into the sunset. I looked at my arm, and I was pleased to see the swelling wasn't as bad as it was the first time this happened.

I ran that day with one needle and one catheter line. I got ice for my arm right away, so I was hopeful the swelling would subside. When I came back fro my Thursday appointment, I thought the swelling had gone down enough to try again. The nurse agreed, so she tried again. The lower needle worked fine,but nothing was happening with the top needle. My arm started to swell again. Time for more ice.

Now I was angry. Not at the nurse. No, I was convinced that the infiltration that happened on my earlier visit that week was caused by operator error. I was sure that the tech that day was distracted by all the fun happening away from my chair. A little more focus and maybe I wouldn't be getting my arm iced.

I shared my frustration with the Nurse Manager, and she did what she was supposed to do. She stood up for her tech. I expected that, but I mostly just wanted to be heard. Despite having the opportunity to vent, I still couldn't let it go. I was back in the chair the next day (my wife and I were going out of town for the weekend), running with both catheters. My anger continued to build as the techs continued to tell me that my fistula probably wasn't developed enough for the bigger needle. Really? The two weeks of running fine don't count for anything? Was it a fluke that I was running well all that time? I couldn't get my head around that at all.

It didn't take long for my body to pick up on all of this anger, and my reward for this really positive outlook I was carrying around, was to get sick. More good news! As I write this entry, I'm still coughing a bit, but I think I"ll be better on Monday. I'm done being angry, although writing about this again has stirred up some of those earlier feelings. These things happen is the way I've got to face this.

One of the nurses thinks my fistula is clotted. That sounds bad, but that can be corrected. I see the surgeon next week, and I'm thinking now he will be making another appointment to get in there and correct the problem. I'm not overly excited about this, but it's better than waiting for my arm to come around on its own, when it's looking like it won't.

So, as another day of dialysis winds down, I'm looking forward to the resolution of this latest drama. The quality of my dialysis has been great since using the fistula. If I can't tolerate the big needle, which is possible, I should be able to do just as well with the medium sized needle. If that's the case, I'll be making that appointment for removing the catheter sometime in July.

I'm crossing my fingers. In the meantime, I have some other cool stuff happening in June that will help me re-focus.

More Lines About My Lifeline

My first post about my wife described the practical side of her contributions to my life. Those are certainly important, but not nearly as important as the emotional support she has provided since all of this drama began.

Jeannie likes to tell people about how much my positive outlook helps me get through the challenges we have faced so far, and the ones that are sure to be coming around the bend. The truth is my positive outlook is a result of the love and support that Jeannie continues to give me every day.

Believe me there have been times when it's been tough to put on a smiley face. In those moments when it's just the two of us, and the enormity of what's taken place in the last couple of years washes over us, it's easy to fall apart. I've crumbled many times, and Jeannie has been there to pick me back up. She's had her moments too, when she has felt sorry for me and all the tests and procedures I've gone through, and the lifestyle changes my conditions have brought upon us both. In those moments, I've had to be strong and remind her that somewhere there are others who are going through the same thing, maybe to a more worse degree or without the support of someone who loves them unconditionally.

It's one thing to declare our love in sickness and in health when we recite our wedding vows, but no one expects that declaration to be tested so early in a marriage. It's something one generally associates with growing old. Well, our test came early. I think we'll pass this test with flying colors and be able to grow old together.

My Lifeline

Since beginning this blog, I completed the paperwork for a kidney transplant and will start the evaluation process in June. Before I get started writing about this process, I need to write a couple hundred words about my wife.

Jeannie and I have been married for two years. I told her about the leukemia when we were dating. Other than some doctor visits, leukemia wasn't something that interfered with our life. She may have been thinking that some day I would need treatment, but it wasn't something we talked about.

I introduced her to Dr. Tarantolo when our conversations turned to treatment. As much as I had already come to respect Dr. T through our visits, my admiration and respect grew after observing how he was with Jeannie when they first met. I introduced them during one of my regular Thursday visits, and he immediately turned to her and gave her the rundown of my condition, what he thought about my prognosis, and why he thought it was time for treatment. He was reassuring and confident, and by the time we were finished talking, Jeannie had a better understanding of my situation, and she felt better about the treatment I was preparing for.

To say that Jeannie was supportive and helpful during my initial treatments would be an understatement. She was with me for the first couple of treatments, to make sure I was doing okay and to make sure I got home safely. She made lunch for us to eat during treatments and made friends with all the nurses. She even baked cookies for the nurses during the holidays.

The Rituxan, easy as it was to tolerate, still sapped a lot of my strength from me. Saturdays were usually pretty good days, but on Sundays I was pretty much a couch potato. I didn't have the energy to help much with the daily household duties, so Jeannie picked up the slack there, doing my work on top of the many things she does on a daily basis. By the time Wednesday would roll around, I would feel a bit more normal. Thursdays were the best, and then it would be time for another Friday treatment.


We celebrated our first wedding anniversary with the leukemia reduced to next to nothing. Our lives got back to something resembling a normal routine.

The kidney problems appeared out of left field. Neither one of us were prepared for what my kidneys were going to put us through. After my second kidney biopsy, we met with a dietician who set us up with some dietary ideas that would be more kidney friendly for me. That was all Jeannie needed to dig in and learn more about renal diet needs and get started on making some changes to what we ate.

Jeannie is a great cook. There isn't anything that she can't put together. I was never worried about her ability to adapt to the needs of a renal diet. She wasn't as confident, probably because she was cooking in a way that was different than she had cooked before. To her credit, she hung in there, signed up to receive renal recipes on-line, and started modifying some of her tried and true recipes to adapt them to the renal way.

Since the September train wreck, our lives have changed drastically. Everything we do has to line up with my dialysis schedule, doctor appointments, and Rituxan maintenance treatments. In other words, we don't do much. This has probably been the hardest thing for her. We used to drive back to see her Mom, her son Matt, and the grandkids, Jacob and Olivia, 2-3 times each month. That all changed with my kidneys.

Our trips back to visit have been cut back to once a month, which I know is not what she signed up for when she said yes to my marriage proposal! I feel bad sometimes that my condition has caused such a change in how we are living. She hasn't flinched a bit, and even though it's been tough to accept some of these lifestyle changes, I am so blessed to be with someone willing to do what it takes to make it all work out.

I can't imagine going through all of this myself. I get great compliments from Jan, the dietician at the dialysis clinic, for the way I've been able to do so great with my renal diet and how well all my lab work has turned out. I can't take any of the credit for that. Jeannie deserves all the credit for going above and beyond the call to make sure I have food that is good for me and my situation. I'm truly the luckiest man in the world.

As we prepare for the possibilities on the road to a kidney transplant, I know it will all be fine because Jeannie is right there with me.