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.
Monday, August 29, 2011
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.
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!
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.
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.
Subscribe to:
Posts (Atom)