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!

The Intial Dialysis Sessions

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

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

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

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

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

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

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

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

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

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

The Train Wreck

Armed with my blood pressure medicine, I was ready to start trying to help my kidneys. I was still holding out some hope that I could avoid dialysis. I didn't know if that was possible, but that was my plan.

I woke up on September 18 feeling kind of queasy. For whatever reason, the maintenance treatments were really upsetting my stomach. Eating didn't help much, and water just tasted awful, but the compazine seemed to help, so I took one.

After I ate my breakfast, I took my blood pressure pill and got ready for work. I exercised at noon, which was normal, and then I had lunch. My stomach felt upset again, so I took another compazine. Timing-wise I was fine, so I didn't think twice about it.

Around 2:30pm I noticed that I was having problem catching my breath. There are times when I sit at my desk and work without any interaction with co-workers (this doesn't happen often enough sometimes!), so I hadn't tried talking much that afternoon.

I called Jeannie after about 10 minutes of this. I'm sure I didn't sound great, but I had never had a reaction to medicine before, so I didn't really know what was happening to me. I called Dr. Frock's office and explained to the nurse that I thought I might be having a reaction to the blood pressure medicine I was taking. That seemed  right to me, because I had taken compazine before with no problem.

When Dr. Frock called back, I was sounding a bit like Snagglepuss, slobbering my words. I was able to get across to him that something was going on, and I needed some guidance. He said it sounded like an allergic reaction that would pass. He asked me if my tongue felt like it was swelling up, because that would be a problem. Well, I locked onto that and started feeling my tongue. I couldn't tell if it was swollen. How can you tell?

Dr. Frock's advice to me was to go to the ER if I thought my tongue was swollen, or if I was afraid. Whatever knowledge I lacked about the swelling of my tongue, I more than made up with just being generally afraid! I hung up with him and went into see a group of co-workers to see if they thought I looked different.

Sue and Tara thought my face looked swollen, and of course I was still slobbering my speech. I was pretty sure I wanted to go to the ER. The only decision left to make was whether or not I would drive myself. I didn't think I would have a problem driving, but I was afraid that this thing going on inside of me would get worse. I asked Sue if she would drive me to Bergan. It wasn't the closest hospital, but it was a place I was familiar with. My first ER visit was about to happen.

I don't know if Sue was worried, but if she was, she didn't let on. I gathered up my things and walked out of the office. I told one more co-worker that I was leaving and that was that. I got into Sue's truck and went to call Jeannie to let her know what was happening. This was pretty comical.

Sue is a fine driver, but her truck rides rougher than my car, so as I'm trying to not freak out about what's happening to me, I'm trying to dial Jeannie's work number from my cell phone. Jeannie's office number gets answered first by an auto-attendant that prompts you to press 1, and then enter a 4-digit number. It took me almost five minutes to get her main number dialed correctly with all the bouncing around we were doing. Every time I got the number dialed right, though, I would mess up the 4-digit number. Bogus!

After what seemed like an eternity, but was probably only 10 minutes, I dialed all the numbers correctly. Jackpot! Fortunately, she was at her desk! I calmly slobbered out that we were going to Bergan. I told her what I was experiencing and that other than breathing and talking funny I was feeling okay. She said she would leave work and meet us at Bergan. For the rest of the drive, my breathing and slobbering speech would get better and then get worse.

Once we were at Bergan, I got checked in right away. There was no one else waiting, so I thought this was going to be okay. A nurse came to get me before Jeannie got there, so Sue waited for her. Sue was great for me during this little adventure.

The time in the ER was slow and scary. I had plenty of attention, but the focus was on determining if I was having a stroke. My face had the look, with my right side positioned up higher than my left. When Jeannie arrived, I was laying back, trying hard to breath normally. Instead of normal quiet-we-take-it-for-granted-breathing, I made this low moaning sound with every breath. My voice evolved from Snagglepuss to Bullwinkle while we waited for this to get resolved.

My primary, Dr. Pajnigar, came in about an hour into my time in the ER. By this time the crazy breathing and cartoon voice was coming and going as if I was a pregnant woman having contractions. Jeannie and I laughed about that as the pattern revealed itself. Just before Dr. Pajnigar walked in, I had one of my normal moments, but as soon as he asked how I was feeling, Bullwinkle came alive again, with the added bonus of my teeth grinding. This was something new.

They had done a CT scan earlier, and I thought I heard it turned out fine. Dr. Pajnigar said that wasn't the case. There was a shadow or something on my head. So, even though I was convinced this was an allergic reaction, no one was ready to call it that, so I got a visit from the neurologist. I don't remember her name, but she was quite the cut-up. It was exactly what I needed at that moment.

She did all the typical things, shining her light in my eyes, having me pull her hands with both of my hands. She didn't think the spot on my head was fresh, so as she eye-balled my scary looking face, my bulging neck muscles and generally stiff as a board appearance (I don't know if she thought my Bullwinkle voice was cool), she determined that I was having a reaction to medicine, but it was the compazine, not the blood pressure medicine.

Next thing you know, the nurse was pushing benadryl into me. Within 30 seconds Snagglepuss, Bullwinkle, and any other cartoon characters I resembled that afternoon were gone. I was back to normal. I would need to be admitted, but I was going to be fine.

The other shoe in this deal was that my lack of kidney function was probably the source of all this drama. Dr. Pajnigar was pretty stern with me about needing dialysis when he had stopped by earlier in all of this. They had me now. By the time Dr. Frock came to see me and make it official that evening, I knew that the next chapter in this adventure was going to be dialysis.

My Wednesday adventure was the opening door to more fun on Thursday. I was going to get a catheter after I got an EEG and an MRI. And, I was going to have my first dialysis treatment. So much for my plan!