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.