Just a brief note this evening...
I had planned on writing my next blog tonight, but I not only feel completely wiped out by today's dialysis, but my flank pain is ridiculous and I cannot get comfortable laying, standing, sitting, etc. To say I am miserable tonight would be a fair assertion.
With all of this, I just don't have it in me to type up a regular blog entry. Maybe tomorrow; but no promises one way or the other.
Have an enjoyable Sunday, everyone!
Good Health to All!
ScottW
Update! 07 April 2013:
I'm going to try my hand at Twitter for anything related to my kidney disease such as treatments, procedures, daily updates, etc. If you are interested, you can follow me at:
@HCB63 (under ScottW).
We'll see how it goes for a while.
As far as today, my body is not so weary this afternoon, but the bilateral flank pain is terrible. No good, there! SW
Sunday, April 7, 2013
Monday, April 1, 2013
01 April 2013
No April Fools jokes...I really am here to write a blog entry.
Sorry about two weeks passing. I have not been feeling the best lately, and typing up an entry just seemed like a lengthy, arduous chore; and I just haven't had the mental energy to overcome that.
So, let's get going with the weights:
16 March 13
Starting Weight: 106.0 Kg
Ending Weight: 103.5 Kg
Water Removed: 2.50 Kg
19 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.2 Kg
Water Removed: 3.50 Kg
21 March 13
Starting Weight: 106.6 Kg
Ending Weight: 103.1 Kg
Water Removed: 3.50 Kg
23 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.3 Kg
Water Removed: 3.40 Kg
26 March 13
Starting Weight: 105.8 Kg
Ending Weight: 103.3 Kg
Water Removed: 2.50 Kg
28 March 13
Starting Weight: 106.3 Kg
Ending Weight: 102.8 Kg
Water Removed: 3.50 Kg
30 March 13
Starting Weight: 106.0 Kg
Ending Weight: 104.4 Kg
Water Removed: 1.60 Kg
As you can see, the wild weight swings have partially eased off. My top weight has become steady; though my body is still dropping an extra kilogram most of the time. The 104.4 kg end weight on my last Tx was the first time all March that I either did not give too much back, or that I even got close to my dry weight. I am just happy I am not ballooning up top 107-108 kg's. That was so hard on my body! Too many cramps go along with that when combined with a 4+ kg loss during Tx.
Also, remember my March labs and the two consecutive jumps in phosphorous? Well, the dietitian was greatly concerned about the huge leaps and ordered additional testing and we actually saw another jump (from 5.8 up to 6.6--which is way over the top of the range). A week later, on yet another draw, my phosphorous dropped all the way down to 4.8. She--the dietitian--consulted with my nephrologist who stated that the jump in the phosphorous numbers was most likely the result of further loss of renal function, then my body trying to compensate (hence the jump then drop in the number). Since we no longer test for the GFR (Glomelular Filtration Rate, or total kidney function), then we don't know the impact on my kidneys.
On my end of things, I continue to urinate at a decent volume, and more often than not, my urine is fairly clear and free of particulates or proteins. Yes, I still have instances of decreased volume, foamy urine and moderately yellowed in color, the truth is that right now, aside from decreasing frequency of urination, my kidneys seem to be doing a fairly decent job. I still have LOTS of bilateral flank pain--this has never gone away or even decreased--and I feel like garbage most of the time; but at least I haven't felt any major downward turn in my day to day health. And frankly, I don't know if this is a good thing, or bad. In either case, I'll certainly take a bit of a reprieve.
My overall appetite has decreased by around 25%. I no longer eat breakfast at all; not even a bowl of cereal. My lunches aren't happening until two or three in the afternoon, and my dinners are less than they were a month ago. Plus, I'm not snacking hardly at all.
And my liquid intake has decreased as well; though this one is voluntary. As I get closer to renal removal, I am continuing my efforts to get used to decreasing volumes of liquids. It still isn't fun; but again, I don't want to have to make the adjustment after I have no kidneys. Getting used to being thirsty is not an easy thing to do. However, for myself, this is the best way to approach this impending reality.
With the huge swings in my weight (pre and post-dialysis), I have been feeling lousy. I have been awoken from my dialysis nap with nasty, painful cramping in both feel and lower legs. Unfortunately, standing is the best way to alleviate the cramping; followed by drinking water (or in my case, Smart Water by Glaceau). Also, the extra fluid losses are causing extreme exhaustion and ultimately, ruins my off days with more exhaustion, sore legs and just feeling lousy.
And on top of all that, my nausea has increased over the last few weeks. I am taking Promethazine (the anti-emetic) more frequently. The nausea is hitting at all times of the day. It particularly likes getting me in the middle of the night. Nothing like waking from a sound sleep feeling as if you'll throw up any second, and having to just deal with that for 45+ minutes until the Promethazine kicks in. Then, you get to sleep in a long time and feel ridiculously groggy for hours after you awaken. Not exactly my idea of fun...but at least I can kill the nausea for a while; which is always a great thing!
My dreams have been good lately. No nightmares, and I have been controlling things in my subconscious with little effort on my [conscious] part. It is a really nice break from the terrible dreams that can very easily bring down my defenses and bring hopelessness and despair to my heart. I still never remember my dreams--which is nothing new--I just know when I've had dreams in which my conscious mind had to alter events or emotions in my subconscious. Conversely, I know when my dreams have been good in general, and I have not had to change anything. This part of my fight I am always grateful for. How you sleep and dream so greatly influences your conscious mind that I undoubtedly would not be as strong if I was having a struggle subconsciously. You've read about how instances of bad dreams have negatively affected me; so, you also know that when I say my dreams have been good, I am doing exceptionally mentally, from day to day.
That's never to say I don't get tired of all this. Anyone would. I have my days when I just want a break. Never getting discouraged, mind you...just wanting a break for even a few hours. But, I always fight through this and keep my mind in a good place. You practice this long enough and I can promise you that is becomes habit and fairly easy from day to day.
However, giving me additional strength every day--sometimes every minute--are the thoughts, prayers and general support I get from my family and my many friends around the world. Thank you all for every effort you make for me. I literally could not do this without you! My friends and loved ones are my pillars, and I stand strong because of you.
And with that, I shall say so long, for now. I will try to avoid another two week lapse in my blog entries...no promises, though. ;o)
Good Health to All!
ScottW
Sorry about two weeks passing. I have not been feeling the best lately, and typing up an entry just seemed like a lengthy, arduous chore; and I just haven't had the mental energy to overcome that.
So, let's get going with the weights:
16 March 13
Starting Weight: 106.0 Kg
Ending Weight: 103.5 Kg
Water Removed: 2.50 Kg
19 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.2 Kg
Water Removed: 3.50 Kg
21 March 13
Starting Weight: 106.6 Kg
Ending Weight: 103.1 Kg
Water Removed: 3.50 Kg
23 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.3 Kg
Water Removed: 3.40 Kg
26 March 13
Starting Weight: 105.8 Kg
Ending Weight: 103.3 Kg
Water Removed: 2.50 Kg
28 March 13
Starting Weight: 106.3 Kg
Ending Weight: 102.8 Kg
Water Removed: 3.50 Kg
30 March 13
Starting Weight: 106.0 Kg
Ending Weight: 104.4 Kg
Water Removed: 1.60 Kg
As you can see, the wild weight swings have partially eased off. My top weight has become steady; though my body is still dropping an extra kilogram most of the time. The 104.4 kg end weight on my last Tx was the first time all March that I either did not give too much back, or that I even got close to my dry weight. I am just happy I am not ballooning up top 107-108 kg's. That was so hard on my body! Too many cramps go along with that when combined with a 4+ kg loss during Tx.
Also, remember my March labs and the two consecutive jumps in phosphorous? Well, the dietitian was greatly concerned about the huge leaps and ordered additional testing and we actually saw another jump (from 5.8 up to 6.6--which is way over the top of the range). A week later, on yet another draw, my phosphorous dropped all the way down to 4.8. She--the dietitian--consulted with my nephrologist who stated that the jump in the phosphorous numbers was most likely the result of further loss of renal function, then my body trying to compensate (hence the jump then drop in the number). Since we no longer test for the GFR (Glomelular Filtration Rate, or total kidney function), then we don't know the impact on my kidneys.
On my end of things, I continue to urinate at a decent volume, and more often than not, my urine is fairly clear and free of particulates or proteins. Yes, I still have instances of decreased volume, foamy urine and moderately yellowed in color, the truth is that right now, aside from decreasing frequency of urination, my kidneys seem to be doing a fairly decent job. I still have LOTS of bilateral flank pain--this has never gone away or even decreased--and I feel like garbage most of the time; but at least I haven't felt any major downward turn in my day to day health. And frankly, I don't know if this is a good thing, or bad. In either case, I'll certainly take a bit of a reprieve.
My overall appetite has decreased by around 25%. I no longer eat breakfast at all; not even a bowl of cereal. My lunches aren't happening until two or three in the afternoon, and my dinners are less than they were a month ago. Plus, I'm not snacking hardly at all.
And my liquid intake has decreased as well; though this one is voluntary. As I get closer to renal removal, I am continuing my efforts to get used to decreasing volumes of liquids. It still isn't fun; but again, I don't want to have to make the adjustment after I have no kidneys. Getting used to being thirsty is not an easy thing to do. However, for myself, this is the best way to approach this impending reality.
With the huge swings in my weight (pre and post-dialysis), I have been feeling lousy. I have been awoken from my dialysis nap with nasty, painful cramping in both feel and lower legs. Unfortunately, standing is the best way to alleviate the cramping; followed by drinking water (or in my case, Smart Water by Glaceau). Also, the extra fluid losses are causing extreme exhaustion and ultimately, ruins my off days with more exhaustion, sore legs and just feeling lousy.
And on top of all that, my nausea has increased over the last few weeks. I am taking Promethazine (the anti-emetic) more frequently. The nausea is hitting at all times of the day. It particularly likes getting me in the middle of the night. Nothing like waking from a sound sleep feeling as if you'll throw up any second, and having to just deal with that for 45+ minutes until the Promethazine kicks in. Then, you get to sleep in a long time and feel ridiculously groggy for hours after you awaken. Not exactly my idea of fun...but at least I can kill the nausea for a while; which is always a great thing!
My dreams have been good lately. No nightmares, and I have been controlling things in my subconscious with little effort on my [conscious] part. It is a really nice break from the terrible dreams that can very easily bring down my defenses and bring hopelessness and despair to my heart. I still never remember my dreams--which is nothing new--I just know when I've had dreams in which my conscious mind had to alter events or emotions in my subconscious. Conversely, I know when my dreams have been good in general, and I have not had to change anything. This part of my fight I am always grateful for. How you sleep and dream so greatly influences your conscious mind that I undoubtedly would not be as strong if I was having a struggle subconsciously. You've read about how instances of bad dreams have negatively affected me; so, you also know that when I say my dreams have been good, I am doing exceptionally mentally, from day to day.
That's never to say I don't get tired of all this. Anyone would. I have my days when I just want a break. Never getting discouraged, mind you...just wanting a break for even a few hours. But, I always fight through this and keep my mind in a good place. You practice this long enough and I can promise you that is becomes habit and fairly easy from day to day.
However, giving me additional strength every day--sometimes every minute--are the thoughts, prayers and general support I get from my family and my many friends around the world. Thank you all for every effort you make for me. I literally could not do this without you! My friends and loved ones are my pillars, and I stand strong because of you.
And with that, I shall say so long, for now. I will try to avoid another two week lapse in my blog entries...no promises, though. ;o)
Good Health to All!
ScottW
Friday, March 15, 2013
15 March 2013
Seeing that I am behind in my entries, let's get right to it.
The March blood draw results:
*Albumin (12 Mar): 4.60 g/dL (+0.10 from 19 Feb)
*Hemoglobin (12 Mar): 11.1 g/dL (+.60 g/dL from 05 Feb)
*Ca Corrected (05 Mar): 9.30 mg/dL (-0.40 mg/dL from 05 Feb)
*Phosphorous (05 Mar): 5.70 mg/dL (+ 0.8 mg/dL from 05 Feb)
*PTH Intact (19 Feb): 97 pg/mL (-21 pg/mL from 08 Jan)
*K+ (19 Feb): 4.00 mEq/L (-0.40 from 08 Jan)
*spKdt/V Dialysis (05 Mar): 1.46 (-0.90 from 05 Feb)
I really don't like the big jump in phosphorous. That's now two months in a row that my phosphorous has jumped. I don't know why. I'm taking my binders as I need, I am [mostly] avoiding the foods that will raise the number. Even when I was on the cruise I was actually really good about the foods I ate. So, looks like more work ahead of me this month to get that back in line. :o(
My last two weights from dialysis:
12 March 2013
Starting Weight: 107.7 Kg
Ending Weight: 103.1 Kg
Water Removed: 4.60 Kg
14 March 2013
Starting Weight: 106.9 Kg
Ending Weight: 103.5 Kg
Water Removed: 3.40 Kg
The pattern of my body giving back too much continues. That's now happened on every Tx since I returned from vacation. During yesterday's dialysis setup, the Tech even aimed for 104.6 Kg in anticipation of my giving back extra water; only to be 1.1 Kg under that. I asked one of the doctors about it on Tuesday and he stated that my numbers look good, so there is not a good reason other than, that's what my body is doing. So, unless the extra losses become alarming in their total volume each dialysis, I'll just keep doing what I'm doing, and hope that these wild swings come to an end.
I am thinking about a date to get my kidneys out. They have been getting more and more painful. During dialysis--and even with sitting up--by the end of the session I need to take pain meds as much for my back as for my [usually] raging headache. Not fun. Even now as I sit here typing the pain in both flanks is so bad I can hardly stand it.
I've also started a renewed effort to cut back on my daily liquids (again, in anticipation of the nephrectomy) so that I struggle less when my liquids intake is reduced to about 32 oz's per day. That is going to be a tough one for me. I thrive on water, juices, milk, etc. Cutting back to a quart in a 24 hour period will not be easy. Better to get started now than be forced into it when the kidneys are gone.
I will absolutely keep you updated on the decision about getting the nephrectomy done.
And lastly, I'll leave you on a light-hearted note. The picture below is of one of the Tech's at Davita today dressing up as Dialysis Man! He walked around like this all shift. It was awesome!
Good Health to All!
ScottW
The March blood draw results:
*Albumin (12 Mar): 4.60 g/dL (+0.10 from 19 Feb)
*Hemoglobin (12 Mar): 11.1 g/dL (+.60 g/dL from 05 Feb)
*Ca Corrected (05 Mar): 9.30 mg/dL (-0.40 mg/dL from 05 Feb)
*Phosphorous (05 Mar): 5.70 mg/dL (+ 0.8 mg/dL from 05 Feb)
*PTH Intact (19 Feb): 97 pg/mL (-21 pg/mL from 08 Jan)
*K+ (19 Feb): 4.00 mEq/L (-0.40 from 08 Jan)
*spKdt/V Dialysis (05 Mar): 1.46 (-0.90 from 05 Feb)
I really don't like the big jump in phosphorous. That's now two months in a row that my phosphorous has jumped. I don't know why. I'm taking my binders as I need, I am [mostly] avoiding the foods that will raise the number. Even when I was on the cruise I was actually really good about the foods I ate. So, looks like more work ahead of me this month to get that back in line. :o(
My last two weights from dialysis:
12 March 2013
Starting Weight: 107.7 Kg
Ending Weight: 103.1 Kg
Water Removed: 4.60 Kg
14 March 2013
Starting Weight: 106.9 Kg
Ending Weight: 103.5 Kg
Water Removed: 3.40 Kg
The pattern of my body giving back too much continues. That's now happened on every Tx since I returned from vacation. During yesterday's dialysis setup, the Tech even aimed for 104.6 Kg in anticipation of my giving back extra water; only to be 1.1 Kg under that. I asked one of the doctors about it on Tuesday and he stated that my numbers look good, so there is not a good reason other than, that's what my body is doing. So, unless the extra losses become alarming in their total volume each dialysis, I'll just keep doing what I'm doing, and hope that these wild swings come to an end.
I am thinking about a date to get my kidneys out. They have been getting more and more painful. During dialysis--and even with sitting up--by the end of the session I need to take pain meds as much for my back as for my [usually] raging headache. Not fun. Even now as I sit here typing the pain in both flanks is so bad I can hardly stand it.
I've also started a renewed effort to cut back on my daily liquids (again, in anticipation of the nephrectomy) so that I struggle less when my liquids intake is reduced to about 32 oz's per day. That is going to be a tough one for me. I thrive on water, juices, milk, etc. Cutting back to a quart in a 24 hour period will not be easy. Better to get started now than be forced into it when the kidneys are gone.
I will absolutely keep you updated on the decision about getting the nephrectomy done.
And lastly, I'll leave you on a light-hearted note. The picture below is of one of the Tech's at Davita today dressing up as Dialysis Man! He walked around like this all shift. It was awesome!
Good Health to All!
ScottW
Sunday, March 10, 2013
10 March 2013
(Continuing from Last Entry on 08 March 2013)
As beautiful as Nassau was, the cruise had one more stop to make the next day. The destination: Coco Cay, the RCL's privately owned island in the Bahamas.
The island really isn't much, as far as size and amenities. Basically, it is a beach, some support buildings (mostly open-sided) and a few docks. However, it is gorgeous there!
Like I stated, Gorgeous!
I took the launch to the Cay and enjoyed the warm waters, the cool shade of the coconut trees, and, of course, the free lunch. The ship stayed at the Cay until 430p when we set sail for the home port of Port Canaveral; arriving there the next morning. The three day cruise went by all too fast; but it was sure memorable. For me, the best thing about this cruise was the brief respite from the mental burden of this disease. Though I still had physical constraints by which I conducted my days, it was the mental vacation of sorts that I cherish most. I was doing something most unsick-like, I was enjoying myself immensely, and I had a few days that this disease wasn't at the forefront of my time. It was a nice, and very welcomed break.
The afternoon of getting back to Florida, I was again at DaVita Orlando East. My Tech this time was Leanna, and she was fantastic! The entire crew was eager to hear of my adventures on the cruise; but Leanna was especially inquisitive and she seemed genuinely interested in me and my time on the cruise. Plus, she showed me something that I have taken back with me to my DaVita clinic here in Provo--a technique of needle removal that is less painful.
Essentially, the canulating needle [on removal following Tx] is rolled back and forth all the way out of the arm. For the first time I had zero pain on removal, so I asked what she did, and Leanna graciously explained the easy--but often overlooked--technique. It leaves a little blood on the arm, but that is a very miniscule price to pay for improved comfort during needle removal. My first treatment here at home I explained it, the Tech did it as described, and...no pain. I am having all my Tech's do this from now on.
This second treatment (Tx) in Orlando went well. Aside from being at 109.6 Kg's, I felt just fine; though my energy was pretty much gone. I targeted my weight a little heavy, leaving the clinic at 104.6 Kg's. As there would be only two days until my next Tx, I felt that leaving a little heavy would be just fine.
Since my return from the trip, my weights have been way off on both ends of Tx. Here are my weights since the 28th (Feb):
28 Feb 13
Starting Weight: 106.9 Kg
Water Removed: 3.70 Kg
Ending Weight: 103.2 Kg (That's a .90 Kg give-back)
02 March 13
Starting Weight: 106.8 Kg
Water Removed: 3.70 Kg
Ending Weight: 103.1 Kg (A 1.0 Kg give-back)
05 March 13
Starting Weight: 107.1 Kg
Water Removed: 3.80 Kg
Ending Weight: 103.3 Kg (A .80 Kg give-back)
07 March 13
Starting Weight: 107.5 Kg
Water Removed: 4.40 Kg
Ending Weight: 103.1 Kg (A 1.0 Kg give-back)
09 March 13
Starting Weight: 108.0 Kg
Water Removed: 5.60 Kg
Ending Weight: 102.4 Kg (A 1.7 Kg give-back)
By give-back, I am referring to the amount of water my body is giving back to dialysis above and beyond the target goal of 104.1 Kg. We are not planning this extra water removal; it is simply my body ridding itself of this water. Yesterday's was the worst yet. During Tx I was nauseated, had cramping in my feet, legs, shoulders, neck and up and down my spine. My sleep was terrible because of this, and I have been dragging all day. The only reason I can think of for this sudden change [in my total water removal] is my vacation. Perhaps being at seas level triggered something my my body. Maybe it was the warmth and humidity, or a combination of everything. I don't know for certain...just positing ideas.
I just hope that things settle down. My body is having a rough time of things with going lite Tx after Tx. Today's extra loss was in spite of the tech going a Kg heavy in anticipation of giving that extra Kg back; only to give 1.7 Kg too much.
Also, as I stated prior to the cruise, I moved last week. So, instead of resting on my off-days, I have been working on unpacking. (yay for me.) Thing are finally settling down, and my routines will gradually settle back to normal.
I had the monthly blood work drawn last week, but will save those numbers for my next entry.
For now, I'm through with typing.
Have a great few days! See you soon!
Good Health to All!
ScottW
As beautiful as Nassau was, the cruise had one more stop to make the next day. The destination: Coco Cay, the RCL's privately owned island in the Bahamas.
The island really isn't much, as far as size and amenities. Basically, it is a beach, some support buildings (mostly open-sided) and a few docks. However, it is gorgeous there!
(Leaving the ship for Coco Cay, Bahamas. 24 Feb 2013 SW)
(The docks at Coco Cay, Bahamas. 24 Feb 2013 SW)
(A Beach on Coco Cay, Bahamas. 24 Feb 2013 SW)
(A postcard view of the ship from Coco Cay, Bahamas. 24 Feb 2013 SW)
(Thatch Umbrella on Coco Cay, Bahamas. 24 Feb 2013 SW)
(Coconut trees and blue waters at Coco Cay, Bahamas. 24 Feb 2013 SW)
I took the launch to the Cay and enjoyed the warm waters, the cool shade of the coconut trees, and, of course, the free lunch. The ship stayed at the Cay until 430p when we set sail for the home port of Port Canaveral; arriving there the next morning. The three day cruise went by all too fast; but it was sure memorable. For me, the best thing about this cruise was the brief respite from the mental burden of this disease. Though I still had physical constraints by which I conducted my days, it was the mental vacation of sorts that I cherish most. I was doing something most unsick-like, I was enjoying myself immensely, and I had a few days that this disease wasn't at the forefront of my time. It was a nice, and very welcomed break.
The afternoon of getting back to Florida, I was again at DaVita Orlando East. My Tech this time was Leanna, and she was fantastic! The entire crew was eager to hear of my adventures on the cruise; but Leanna was especially inquisitive and she seemed genuinely interested in me and my time on the cruise. Plus, she showed me something that I have taken back with me to my DaVita clinic here in Provo--a technique of needle removal that is less painful.
Essentially, the canulating needle [on removal following Tx] is rolled back and forth all the way out of the arm. For the first time I had zero pain on removal, so I asked what she did, and Leanna graciously explained the easy--but often overlooked--technique. It leaves a little blood on the arm, but that is a very miniscule price to pay for improved comfort during needle removal. My first treatment here at home I explained it, the Tech did it as described, and...no pain. I am having all my Tech's do this from now on.
This second treatment (Tx) in Orlando went well. Aside from being at 109.6 Kg's, I felt just fine; though my energy was pretty much gone. I targeted my weight a little heavy, leaving the clinic at 104.6 Kg's. As there would be only two days until my next Tx, I felt that leaving a little heavy would be just fine.
Since my return from the trip, my weights have been way off on both ends of Tx. Here are my weights since the 28th (Feb):
28 Feb 13
Starting Weight: 106.9 Kg
Water Removed: 3.70 Kg
Ending Weight: 103.2 Kg (That's a .90 Kg give-back)
02 March 13
Starting Weight: 106.8 Kg
Water Removed: 3.70 Kg
Ending Weight: 103.1 Kg (A 1.0 Kg give-back)
05 March 13
Starting Weight: 107.1 Kg
Water Removed: 3.80 Kg
Ending Weight: 103.3 Kg (A .80 Kg give-back)
07 March 13
Starting Weight: 107.5 Kg
Water Removed: 4.40 Kg
Ending Weight: 103.1 Kg (A 1.0 Kg give-back)
09 March 13
Starting Weight: 108.0 Kg
Water Removed: 5.60 Kg
Ending Weight: 102.4 Kg (A 1.7 Kg give-back)
By give-back, I am referring to the amount of water my body is giving back to dialysis above and beyond the target goal of 104.1 Kg. We are not planning this extra water removal; it is simply my body ridding itself of this water. Yesterday's was the worst yet. During Tx I was nauseated, had cramping in my feet, legs, shoulders, neck and up and down my spine. My sleep was terrible because of this, and I have been dragging all day. The only reason I can think of for this sudden change [in my total water removal] is my vacation. Perhaps being at seas level triggered something my my body. Maybe it was the warmth and humidity, or a combination of everything. I don't know for certain...just positing ideas.
I just hope that things settle down. My body is having a rough time of things with going lite Tx after Tx. Today's extra loss was in spite of the tech going a Kg heavy in anticipation of giving that extra Kg back; only to give 1.7 Kg too much.
Also, as I stated prior to the cruise, I moved last week. So, instead of resting on my off-days, I have been working on unpacking. (yay for me.) Thing are finally settling down, and my routines will gradually settle back to normal.
I had the monthly blood work drawn last week, but will save those numbers for my next entry.
For now, I'm through with typing.
Have a great few days! See you soon!
Good Health to All!
ScottW
Friday, March 8, 2013
08 March 2013
24 Feb. 2013
(Love the purposefully horrendous outfit!)
Lots to talk about, so let's start with the cruise...
Royal Caribbean Intl is an outstanding company! They treated me with only the greatest respect, and assisted me readily any time I asked. The ship, The Monarch of the Seas, was beautiful, the food was delicious, and the entire trip was nothing but memorable.
I arrived in Florida on Wednesday, 20 February. The first day was spent with family, which was thoroughly enjoyable. I got the chance to run their dogs ragged by throwing their ball constantly for about two hours. They were so tired that night that they almost didn't eat! On the morning of the cruise I had my first of the trips' two dialysis Tx's. Being that it was at my normal dialyzing time, this was no big deal.
The employees at Davita Orlando East were exceptional in their duties.
Johnathan, my Tech for the first Tx was ready for me as all my info was waiting. The Tx went well, and seeing the different protocols (as established by the State) was interesting. In fact, the entire staff seemed genuinely happy to see me, and they were excited that I was going on a cruise. I weighed in at a hefty 109.0 Kg's, and, true to form, gave back too much, leaving at a slim 103.6. Nearly five and a half Kg's. Needless to say, but I was wiped out. That's a LOT of weight to drop in four hours. After getting on the ship, setting off and getting some food, I went to my cabin and slept most of the rest of the day and night.
The cruise itself, which we drove to right after Tx,was phenomenal. Like I stated, everything was beyond fantastic. I was sure to watch the sodium intake on all foods, and conserved my strength as best I could for the second stop, Coco Cay--the RCL's privately owned island north of Nassau, in the Bahamas.
So, on our stop in Nassau, I stayed aboard and wandered the ship, taking lots of pics with my HTC phone, my Samsung tablet and a small Nikon. Here are a few of Nassau Harbour...
(Atlantis Resort rises above Nassau Harbour. 23 Feb 2013 SW)
The entrance to Nassau Harbour, Bahamas. 23 Feb 2013 SW)
(Entering Nassau Harbour, Bahamas. 23 Feb 2013 SW)
(Looking out over Nassau, Bahamas from the deck of The Monarch of the Seas.
23 Feb 2013 SW)
I'm glad I stayed aboard in Nassau because I heard from numerous people that everything was a long walk from the ship, and I just couldn't have done that.
So, I think I'll stop this entry here...a good place to do so. It's late, I'm tired, and it just gives everyone something more to look forward to. I will try to get this finished up in a day or so.
Good Health to All!
ScottW
Friday, February 15, 2013
15 February 2013
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
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
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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