Two weeks since my last entry, and with what's coming up in the next two, if I don't get this entry done now, then you wouldn't see another entry for a full month. Let's start with the weights....
02 Feb 13
Starting Weight: 106.6 Kg
Water Removed: 2.50 Kg
Ending Weight: 104.1 Kg
05 Feb 13
Starting Weight: 108.3 Kg
Water Removed: 4.10 Kg
Ending Weight: 104.2 Kg
07 Feb 13
Starting Weight: 106.2 Kg
Water Removed: 2.40 Kg
Ending Weight: 103.8 Kg
09 Feb 13
Starting Weight: 107.5 Kg
Water Removed: 3.70 Kg
Ending Weight: 103.8 Kg
12 Feb 13
Starting Weight: 107.9 Kg
Water Removed: 3.80 Kg
Ending Weight: 104.1 Kg
14 Feb 13
Starting Weight: 108.0 Kg
Water Removed: 3.90 Kg
Ending Weight: 104.2 Kg
My weights continue to be fairly consistent. I am obviously retaining more water than previously (*Note the several 108 Kg weigh-ins), and am urinating a bit less. I cannot account for the increase otherwise as my appetite remains consistent.
The monthly labs were drawn last week. Here are the results:
*Albumin (05 Feb): 4.50 g/dL (No Change from 08 Jan)
*Hemoglobin (05 Feb): 10.8 g/dL (-0.50 g/dL from 08 Jan)
*Ca Corrected (05 Feb): 9.70 mg/dL (+0.30 mg/dL from 08 Jan)
*Phosphorous (05 Feb): 4.80 mg/dL (+ 1.0 mg/dL from 08 Jan)
*PTH Intact (08 Jan): 118 pg/mL (No Change from 1 Dec)
*K+ (08 Jan): 4.40 mEq/L (No Change from 18 Dec)
*spKdt/V Dialysis (05 Feb): 1.55 (+0.08 from 08 Jan)
As you can see the URR value is no longer being used. It has been replaced by the spKdt/V Dialysis value. However, I have not been able to correlate the number with effectiveness of treatments. I will keep asking about it.
So, another month and my labs are still looking good. I don't like to one point jump in the Phosphorous level; but it is still well withing the target range. I have already started having greater awareness of the phosphorous-rich foods I sometimes eat and making sure I take a binder after the meal. (Not that I eat high phos foods in the first place. Overall, I have been extremely good at avoiding these.)
I had my two month follow-up with my Nephrologist this afternoon, and he stated that I am looking good, and everything seems to be progressing well. He likes my labs, and all my efforts to manage the disease [as best I can]. I told him that I am holding off for now on the renal removal as my kidneys are still producing a decent volume of urine, and the flank pain is still tolerable. Plus, I still have that dental work to do. My doctor was fine with my reasoning, and supported the decision.
My sleep continues to be all over the place. The number of hours I get has actually decreased, and I have been taking fewer naps. I estimate my total daily sleep is averaging about 9-10 hours per day; for now, at least.
The headache marches on unencumbered by pretty much anything. I'm still hoping that the nephrectomy will result in the headache disappearing.
My energy and exhaustion levels are both lousy. In other words, Almost zero energy, and extreme exhaustion. I get accomplished what I can from day to day, and just let go of expectations for myself. For me, that's a hard lesson. I am someone who goes at high speed from the moment I awaken until the moment I sleep again. To do very little from day to day is difficult. I try to concentrate on being satisfied with however much I can do; rather than lamenting what I cannot. Like I said, a hard lesson.
Lastly, the reason the rest of February is going to be so hectic...
Remember I was telling you that I am going on a cruise to the Bahamas? Well I leave for that next Wednesday. I'll be gone for one week--three days for the cruise itself. Yes, I have dialysis treatments all set up for the Friday and Monday (the day the ship sails, and the day it returns). I will be going to the Davita Center East in Orlando for both Tx's. Everything was arranged by the Coordinator at my Davita center here.
Also, I am moving at the end of the month, ahead of the upcoming surgeries. The new condo is a lot quieter, is far more restful, and best of all, has no stairs to climb (or descend). So, I am packing the apartment now, will finish up after I get back from the cruise, move, then get my computer set up again...Obviously, it could be a while before my next entry here.
So, that's the latest. I will try, after returning from Florida, to get a few photos from the cruise on here--but that might take a while with the move and all.
Have a great two or three weeks! I will see you all on the flip side of a new home!
Good Health to All!
Let's go have some fun!!!
ScottW
Friday, February 15, 2013
Saturday, February 2, 2013
01 February 2013
My wishes for a better week haven't really panned out as I had hoped.
Weights:
26 Jan 13
Starting Weight: 108.0 Kg
Water Removed: 4.30 Kg
Ending Weight: 103.7 Kg
29 Jan 13
Starting Weight: 107.3 Kg
Water Removed: 3.90 Kg
Ending Weight: 103.4 Kg
31 Jan 13
Starting Weight: 107.2 Kg
Water Removed: 4.10 Kg
Ending Weight: 103.1 Kg
My weight is still way up at the start of dialysis. I have been watching my fluid intake, so the added weight is all about my kidneys being less effective.
However, as you can see on my last three Tx's, my final weight is way below my dry weight target.
My body is simply giving back too much. The numbers are inputted to hit my dry weight, but my cells are giving more. None of the Center Techs can figure out why my body is doing this; it just is. I know that I have stopped trying to guess it because every time I do, I am also wrong and I end up either heavier than I should, or go lighter.
The last three dialysis Tx's have also been rough like I described on my previous post. No fun at all. However, we did figure out how to better minimize my headache that spikes during treatment. First, we changed the water removal to a linear patter--meaning a constant, gradual water removal (rather than the step method of take some, stop removal...take some, stop...etc).
Secondly, we tried to adjust the way sodium is removed as well. We are using something called 'Step Method 3'--whatever that means. I just know that by using this, I am not having a huge spike in headache pain during dialysis. Yes, the headache still worsens by the time I'm done, it just doesn't happen with a WHAM!!! I'll take that!
My bilateral flank pain is just ridiculous all the time. The meds are barely covering it at this point. As the winter has drawn on, I am looking more and more to getting them out. However, two things are needing to happen. First, I have a Bahamas cruise to go on in 21 days from now. Just a change of routine will do my heart and mind tremendous good.
Secondly, in anticipation of the upcoming surgeries and recovery times, I am looking to move to a quieter home, with no stairs, and which is visually restful as well. I have applied to rent a very nice apartment in a mixed use building. These apartments are built to condo standards, so they are very quiet, there are no stairs to handle, and the apartment itself is very nice, very peaceful inside. Assuming I get it, I will be moving sometime in early March.
So, also assuming I get into this apartment, I am looking to mid-March to mid-April for the double Nephrectomy. At that time, if I am still producing a decent volume of urine, and if the pain is still tolerable, that may get pushed back even further.
However, all of this expectation is completely moot if my kidneys totally crash. Only time will tell.
My sleep continues to be very poor. This is still in large part to just being uncomfortable in bed. Generally, the best sleep I get is when I fall asleep in my big comfy chair, in a reclined position. However, I don't like sleeping in that chair a lot. I did my time sleeping for nearly two years in a chair (with ottoman) when I had my back injury in the late 90's. Even my post-dialysis naps have been poor. As a result, I continue to operate exhausted day after day.
As far as eating...there is no change there. No breakfast--which is actually normal for me; a very lite lunch--except on dialysis day; and a dinner that ranges from small to moderate only. As I reported last time, I never know how food will appeal to me. This past week has been rough in that department. So much that I would normally eat has just been a complete turn-off just thinking about, let alone making an actual decision. :o(
And...
There was something else I wanted to say...
...(aargh) I can't remember.
Let's have a great week, Everyone!
Good Health to All!
ScottW
Weights:
26 Jan 13
Starting Weight: 108.0 Kg
Water Removed: 4.30 Kg
Ending Weight: 103.7 Kg
29 Jan 13
Starting Weight: 107.3 Kg
Water Removed: 3.90 Kg
Ending Weight: 103.4 Kg
31 Jan 13
Starting Weight: 107.2 Kg
Water Removed: 4.10 Kg
Ending Weight: 103.1 Kg
My weight is still way up at the start of dialysis. I have been watching my fluid intake, so the added weight is all about my kidneys being less effective.
However, as you can see on my last three Tx's, my final weight is way below my dry weight target.
My body is simply giving back too much. The numbers are inputted to hit my dry weight, but my cells are giving more. None of the Center Techs can figure out why my body is doing this; it just is. I know that I have stopped trying to guess it because every time I do, I am also wrong and I end up either heavier than I should, or go lighter.
The last three dialysis Tx's have also been rough like I described on my previous post. No fun at all. However, we did figure out how to better minimize my headache that spikes during treatment. First, we changed the water removal to a linear patter--meaning a constant, gradual water removal (rather than the step method of take some, stop removal...take some, stop...etc).
Secondly, we tried to adjust the way sodium is removed as well. We are using something called 'Step Method 3'--whatever that means. I just know that by using this, I am not having a huge spike in headache pain during dialysis. Yes, the headache still worsens by the time I'm done, it just doesn't happen with a WHAM!!! I'll take that!
My bilateral flank pain is just ridiculous all the time. The meds are barely covering it at this point. As the winter has drawn on, I am looking more and more to getting them out. However, two things are needing to happen. First, I have a Bahamas cruise to go on in 21 days from now. Just a change of routine will do my heart and mind tremendous good.
Secondly, in anticipation of the upcoming surgeries and recovery times, I am looking to move to a quieter home, with no stairs, and which is visually restful as well. I have applied to rent a very nice apartment in a mixed use building. These apartments are built to condo standards, so they are very quiet, there are no stairs to handle, and the apartment itself is very nice, very peaceful inside. Assuming I get it, I will be moving sometime in early March.
So, also assuming I get into this apartment, I am looking to mid-March to mid-April for the double Nephrectomy. At that time, if I am still producing a decent volume of urine, and if the pain is still tolerable, that may get pushed back even further.
However, all of this expectation is completely moot if my kidneys totally crash. Only time will tell.
My sleep continues to be very poor. This is still in large part to just being uncomfortable in bed. Generally, the best sleep I get is when I fall asleep in my big comfy chair, in a reclined position. However, I don't like sleeping in that chair a lot. I did my time sleeping for nearly two years in a chair (with ottoman) when I had my back injury in the late 90's. Even my post-dialysis naps have been poor. As a result, I continue to operate exhausted day after day.
As far as eating...there is no change there. No breakfast--which is actually normal for me; a very lite lunch--except on dialysis day; and a dinner that ranges from small to moderate only. As I reported last time, I never know how food will appeal to me. This past week has been rough in that department. So much that I would normally eat has just been a complete turn-off just thinking about, let alone making an actual decision. :o(
And...
There was something else I wanted to say...
...(aargh) I can't remember.
Let's have a great week, Everyone!
Good Health to All!
ScottW
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