Monday, August 29, 2011

Try This

As I've written several time in this blog, we have a pretty steady routine going with the thrice-weekly dialysis treatments and the every two-month leukemia maintenance treatments. Throw work in to the mix and the once a month trip back to the Quad Cities area to visit family, and we have a pretty full life.

But, just when you think you're dealing with all you can deal with at one time, up pops another little gift. A gift that serves to remind us that we have the capacity to handle much more than we do in our day to day lives.

My reminder was a UTI, and no, that's not the University of Texas International! Okay, there's probably not such a place, but we're only a few days from the start of another college football season.

It's easier to joke about the UTI (seriously, it's a urinary tract infection) today, because I'm taking medicine to get it taken care of. I don't think I could've written with as much jocularity a couple of weeks ago.

I first became acquainted with the UTI on August 14. I was running in the morning, and it seemed like the more I ran, the more it felt like I needed to go to the bathroom. I ended up walking for most of my outing that morning. I hit the bathroom as soon as I got home, and that's when I noticed the lovely burning sensation and a hint of blood in my urine.

Naturally, I did what everyone does in these situations. I went to the internet to get my medical advice. From what I could tell, I didn't have the symptoms for kidney stones, so I went with the UTI. I wasn't freaking out about it, although I didn't care much for the pain I felt each time I used the bathroom. I figured I would call Dr. Frock the next morning and he would be able to prescribe something for me.

What I didn't count on was that Dr. Frock was in Red Oak, Iowa seeing patients. Surely, if I asked the girl that answered the phone in his office to get a message to him, he would call me back, right? Wrong. I didn't hear from him Monday, so when I went to dialysis Tuesday, I asked Angie, my nurse, to give him a call. She reached him right away, and he prescribed Bactrim, once a day for five days. If that didn't do the trick, he wanted me to call a urologist.

I picked up my Bactrim Tuesday and took it as prescribed. The only thing that seemed to get better was that the blood in my urine went away. Otherwise, I still had as much, if not more, pain. So, on Monday, I called the urologist. The soonest I could get an appointment was Friday, so this was going to be a long week of pain.

On Friday I journeyed to the urologist's office, where I got blood drawn from my arm by the nurse, and a surprise prostate exam from the doctor! Dr. Konigsberg prescribed Cipro, twice a day for 10 days. Since starting on this Friday evening, I'm just about pain free.

To be on the safe side, I need to go back in a couple weeks for a follow-up visit, which is going to include a couple procedures. One test will be a CT scan, but the other one is going to be a cystoscopy. He didn't call it that. No, Dr. Konigsberg just told me that they were going to look inside my bladder to make sure everything was okay. Again, using the internet as my source, it sounds like this involves needles going in through places that have never been stuck before. Bogus!

Dr. Frock had tipped me off to this in his monthly visit last week. He said it hurts, but he reassured me I've had worse pain. I'm not sure I buy that!

I'm waiting now for the scheduler to call me to set up the appointment for this day of fun. I expect I'll hear from them today to get a date.

The moral of this story? Don't think it can never get worse, because it always can. At the same time, we're never given anything we can't handle, so like everything that's come before this latest adventure, we make the adjustments and get it taken care of.

The pain associated with the UTI, and the discomfort that follows once you're out of the bathroom, has kept me on the sidelines with my exercise. This afternoon, I'm going to try and work out. If that goes well, I'll run this evening while Jeannie walks. It will feel good to get back to moving again.

Saturday, August 20, 2011

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.

Monday, August 15, 2011

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!

Friday, August 5, 2011

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.

Saturday, July 30, 2011

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/

Saturday, July 23, 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.

Thursday, July 21, 2011

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!