Wow! Can you believe another year has already passed by?
Alright...Christmas is over, I am done house [and puppy] sitting for a friend, and I am finally getting another entry done. It has only been fifteen days...
Weight Numbers:
18 Dec 12
Starting Weight: 107.6 Kg
Water Removed: 3.80 Kg
Ending Weight: 103.8 Kg
20 Dec 12
Starting Weight: 106.1 Kg
Water Removed: 2.50 Kg
Ending Weight: 103.6 Kg
22 Dec 12
Starting Weight: 105.8 Kg
Water Removed: 2.20 Kg
Ending Weight: 103.6 Kg
24 Dec 12
Starting Weight: 106.1 Kg
Water Removed: 2.60 Kg
Ending Weight: 103.5 Kg
27 Dec 12
Starting Weight: 107.6 Kg
Water Removed: 3.50 Kg
Ending Weight: 104.1 Kg
29 Dec 12
Starting Weight: 105.7 Kg
Water Removed: 2.00 Kg
Ending Weight: 103.7 Kg
My weights continue to be fairly consistent. Any time I drink a lot, my weight increases due to lack of renal output. I am trying to make an effort to reduce my overall liquid intake ahead of my upcoming double nephrectomy. Once the kidneys are removed, I will be restricted to no more than
32 oz of all liquids per day. This includes soups, broths, water, etc. For someone used to drinking nearly a gallon of water every day (plus milk, etc), just one quart (litre) per day is nothing. So, I am slowly getting my body [somewhat] used to less liquid intake--at least until I get a new kidney! Then I can drink water to my hearts content! ;o)
My appetite remains down. The same pattern for eating continues--no breakfast; no lunch, except on my D-days (dialysis); and either a small or moderate size dinner; little or no snacking these days. While it is true that my taste buds are working better, I still have most days that foods just aren't appetizing. I don't know why that is.
My headache is now 24/7 for 37 months and counting. I am hoping that once the kidneys are out that the headache will disappear. It will be interesting to see. Anyhow, the headache is averaging about a 7 between the bad days and the better ones. Dialysis still causes the headache to spike [due to the fluid shift] to a solid 9.75. However, I have noticed that the more water is taken, the greater or more intense the headache becomes. So, it is in my own best interest to try and go into dialysis with as little water gain as possible. On my off days, my headache is mostly reduced to a 6 or 7. While the headache used to be minimal on my off days, the last month has seen a rise in the overall pain level even on the days between treatments (Tx's).
The bilateral flank pain is 24/7. It has been for some time now. This pain does vary--likely, according to my overall fluid retention and/or cystic development--but I am still taking pain meds about 50/50 between my flanks and my headache. It will be nice not to have that pain once the kidneys are gone.
My energy level is down across the board. Even my off days find me dragging and exhausted if I even do something as simple as loading the dishwasher. Cooking is a chore (mentally) as I just don't want to expend that much energy. I am still in a good place mentally; but the constant exhaustion is beginning to take a toll. The ray of hope that keeps me doing as much as I can? That this will soon--and I mean that in as broad a scope as is needed--all be over, and I can get back to pursuing the things I want to yet accomplish.
Lastly, my Christmas was good. Besides house/puppy sitting in a beautifully Christmas decorated home, I ate some tasty food, got top spend some quality time with my daughter, had a nice Christmas day with my son and his family, and got treated to a LOT of very quiet days and nights.
It was wonderful!
Happy New Year, Everyone!
ScottW
Monday, December 31, 2012
Sunday, December 16, 2012
16 December 2012
Since it has been a while since my last entry, let's start with the weights...
08 Dec 12
Starting Weight: 107.0 Kg
Water Removed: 2.50 Kg
Ending Weight: 103.5 Kg
11 Dec 12
Starting Weight: 107.2 Kg
Water Removed: 2.90 Kg
Ending Weight: 104.3 Kg
13 Dec 12
Starting Weight: 107.6 Kg
Water Removed: 3.50 Kg
Ending Weight: 104.1 Kg
15 Dec 12
Starting Weight: 108.1 Kg
Water Removed: 3.80 Kg
Ending Weight: 104.3 Kg
As you can see, my weight has increased when starting my treatment (Tx). I think this is largely due to my being low on electrolytes. When these are low, you often feel excessively thirsty; but no matter how much you drink the thirst remains. Well, I have definitely been water-loading over the past week with that excessive thirst. Doing so only adds extra weight seeing that I no longer excrete the same amount I take in.
Once I realized I was doing this, I went to the store and picked up a liter of Glaceau Smart Water, an electrolyte enhanced bottled water that has no sugar added...just electrolytes.
I drank half last night, and the rest this afternoon and I am already feeling less thirsty, and have, accordingly, drunk less liquids.
I think I will keep a bottle around all the time to be sure this doesn't happen again. My next Tx weigh-in will tell me if I was right in this assertion.
This past Tuesday the dialysis center redrew the post-Tx blood (through the return tube) to check the URR again. After last week's 7% drop, I think they wanted to see if that was aberrant or not. This weeks' URR increased 1% to 69%. Fluctuations in renal effectiveness is normal, so if the drop is temporary, then no big deal. If the numbers stay down, then we know my kidney function has decreased again.
My headache continues without interruption. Now 37 months and counting, the headache is still far worse on D-days due to the fluid shift. My average daily use of T3's remains at about 3.33/day. [Aside from dialysis days] The incidences of medicating for the headache vs the flank pain is now about 50/50.
My appetite is still up and down. Breakfast is a rarity, and lunches usually happen on my Tx days, but almost no others. My snacking has decreased again, and dinners are usually larger now (about 2-2.5 cups). The best part about my appetite is that I am beginning to taste food again! I don't know why I am tasting again; but I won't complain at all because I am enjoying the many taste differences in foods. So nice to have happen because I have hardly tasted my food for a couple of years now.
Aside from the kidney thing, my overall health remains excellent. My lungs are clear, my heart sounds great, and there is nothing else going on that is unusual. I continue to be greatly blessed that no other systems have been affected!
I seem to be starting another cycle of not sleeping well and having an increasing number of naps every day. Right now I am only averaging about five good hours of sleep per night, and around 4 to 5 15-20 minute naps throughout the day. Accordingly, my dreams have been harder to control again. Time to starting giving myself positive reinforcements as I go to sleep. It always works, for me!
And that's all for tonight. No more information is coming to mind! :o)
Good Health to All!
ScottW
08 Dec 12
Starting Weight: 107.0 Kg
Water Removed: 2.50 Kg
Ending Weight: 103.5 Kg
11 Dec 12
Starting Weight: 107.2 Kg
Water Removed: 2.90 Kg
Ending Weight: 104.3 Kg
13 Dec 12
Starting Weight: 107.6 Kg
Water Removed: 3.50 Kg
Ending Weight: 104.1 Kg
15 Dec 12
Starting Weight: 108.1 Kg
Water Removed: 3.80 Kg
Ending Weight: 104.3 Kg
As you can see, my weight has increased when starting my treatment (Tx). I think this is largely due to my being low on electrolytes. When these are low, you often feel excessively thirsty; but no matter how much you drink the thirst remains. Well, I have definitely been water-loading over the past week with that excessive thirst. Doing so only adds extra weight seeing that I no longer excrete the same amount I take in.
Once I realized I was doing this, I went to the store and picked up a liter of Glaceau Smart Water, an electrolyte enhanced bottled water that has no sugar added...just electrolytes.
I drank half last night, and the rest this afternoon and I am already feeling less thirsty, and have, accordingly, drunk less liquids.
I think I will keep a bottle around all the time to be sure this doesn't happen again. My next Tx weigh-in will tell me if I was right in this assertion.
This past Tuesday the dialysis center redrew the post-Tx blood (through the return tube) to check the URR again. After last week's 7% drop, I think they wanted to see if that was aberrant or not. This weeks' URR increased 1% to 69%. Fluctuations in renal effectiveness is normal, so if the drop is temporary, then no big deal. If the numbers stay down, then we know my kidney function has decreased again.
My headache continues without interruption. Now 37 months and counting, the headache is still far worse on D-days due to the fluid shift. My average daily use of T3's remains at about 3.33/day. [Aside from dialysis days] The incidences of medicating for the headache vs the flank pain is now about 50/50.
My appetite is still up and down. Breakfast is a rarity, and lunches usually happen on my Tx days, but almost no others. My snacking has decreased again, and dinners are usually larger now (about 2-2.5 cups). The best part about my appetite is that I am beginning to taste food again! I don't know why I am tasting again; but I won't complain at all because I am enjoying the many taste differences in foods. So nice to have happen because I have hardly tasted my food for a couple of years now.
Aside from the kidney thing, my overall health remains excellent. My lungs are clear, my heart sounds great, and there is nothing else going on that is unusual. I continue to be greatly blessed that no other systems have been affected!
I seem to be starting another cycle of not sleeping well and having an increasing number of naps every day. Right now I am only averaging about five good hours of sleep per night, and around 4 to 5 15-20 minute naps throughout the day. Accordingly, my dreams have been harder to control again. Time to starting giving myself positive reinforcements as I go to sleep. It always works, for me!
And that's all for tonight. No more information is coming to mind! :o)
Good Health to All!
ScottW
Friday, December 7, 2012
07 December 2012
First off: It is December 7th. Seventy one years ago was the attack on Pearl Harbor. Truly a "date which shall live in infamy," I hope that you take a moment to reflect on that terrible day that launched the Greatest Generation into the greatest conflict in history. We all owe those men that were lost that day our respect, out deepest thanks and our honor. They will never be forgotten!
---------------------------------------------------------------------------------------------------------------
As promised, here are my latest lab results:
*Albumin (19 Nov): 4.70 g/dL (+0.30 g/dL from 16 Oct)
*Hemoglobin (04 Dec): 11.70 g/dL (+0.10 g/dL from 27 Nov)
*Ca Corrected (04 Dec): 9.30 mg/dL (-0.30 mg/dL from 06 Nov)
*Phosphorous (04 Dec): 4.70 mg/dL (+0.20 mg/dL from 06 Nov)
*PTH Intact (19 Nov): 95pg/mL (-21 pg/mL from 16 Oct)
*K+ (19 Nov): 4.20 mEq/L (No Change from 16 Oct)
*URR (04 Dec): 68% (-7.0 % from 06 Nov)
= Good =Bad
So, mostly good numbers, with two that concern me; the PTH and the URR. I was discussing with the dialysis dietician about my PTH decline, but she stated that there isn't much I can do beyond controlling it with my diet...which I am already doing. So at this point, the PTH is out of my control.
The URR...seven percent drop in dialysis effectiveness in one month. That's a lot. I'm pretty sure this is a direct reflection of where my kidneys are at. No doubt this number will be discussed with me very soon.
Next, my dialysis weights:
21 Nov 12
Starting Weight: 105.9 Kg
Water Removed: 2.20 Kg
Ending Weight: 103.7 Kg
24 Nov 12
Starting Weight: 106.3 Kg
Water Removed: 2.70 Kg
Ending Weight: 103.6 Kg
27 Nov 12
Starting Weight: 106.2 Kg
Water Removed: 3.00 Kg
Ending Weight: 103.2 Kg
*29 Nov 12
Starting Weight: 106.3 Kg
Water Removed: 2.10 Kg
Ending Weight: 104.1 Kg
*Changed my dry weight from 103.5 Kg to 104.1 Kg to try to eliminate excessive cramping and body aches following dialysis treatments (tx's).
01 Dec 12
Starting Weight: 106.7 Kg
Water Removed: 2.60 Kg
Ending Weight: 104.1 Kg
04 Dec 12
Starting Weight: 107.5 Kg
Water Removed: 3.80 Kg
Ending Weight: 103.7 Kg
06 Dec 12
Starting Weight: 106.3 Kg
Water Removed: 2.60 Kg
Ending Weight: 103.7 Kg
Aside from two days, my body continues to give too much water back, as my target is only hit twice in all of those treatments (tx's). I didn't mind this on Dec 1st when both kidneys were so painful. The extra give-back was definitely a good thing in helping to reduce the terrible pain.
I don't remember if I mentioned that a couple of weeks ago I received the third of the series of the Hepatitis inoculations. I think that is the last one I'll need for a long while.
Well, it's late, I'm tired, there's another round of dialysis in six hours, and I forgot what else I wanted to pass on. So...
Good Health to All!
ScottW
---------------------------------------------------------------------------------------------------------------
As promised, here are my latest lab results:
*Albumin (19 Nov): 4.70 g/dL (+0.30 g/dL from 16 Oct)
*Hemoglobin (04 Dec): 11.70 g/dL (+0.10 g/dL from 27 Nov)
*Ca Corrected (04 Dec): 9.30 mg/dL (-0.30 mg/dL from 06 Nov)
*Phosphorous (04 Dec): 4.70 mg/dL (+0.20 mg/dL from 06 Nov)
*PTH Intact (19 Nov): 95pg/mL (-21 pg/mL from 16 Oct)
*K+ (19 Nov): 4.20 mEq/L (No Change from 16 Oct)
*URR (04 Dec): 68% (-7.0 % from 06 Nov)
= Good =Bad
So, mostly good numbers, with two that concern me; the PTH and the URR. I was discussing with the dialysis dietician about my PTH decline, but she stated that there isn't much I can do beyond controlling it with my diet...which I am already doing. So at this point, the PTH is out of my control.
The URR...seven percent drop in dialysis effectiveness in one month. That's a lot. I'm pretty sure this is a direct reflection of where my kidneys are at. No doubt this number will be discussed with me very soon.
Next, my dialysis weights:
21 Nov 12
Starting Weight: 105.9 Kg
Water Removed: 2.20 Kg
Ending Weight: 103.7 Kg
24 Nov 12
Starting Weight: 106.3 Kg
Water Removed: 2.70 Kg
Ending Weight: 103.6 Kg
27 Nov 12
Starting Weight: 106.2 Kg
Water Removed: 3.00 Kg
Ending Weight: 103.2 Kg
*29 Nov 12
Starting Weight: 106.3 Kg
Water Removed: 2.10 Kg
Ending Weight: 104.1 Kg
*Changed my dry weight from 103.5 Kg to 104.1 Kg to try to eliminate excessive cramping and body aches following dialysis treatments (tx's).
01 Dec 12
Starting Weight: 106.7 Kg
Water Removed: 2.60 Kg
Ending Weight: 104.1 Kg
04 Dec 12
Starting Weight: 107.5 Kg
Water Removed: 3.80 Kg
Ending Weight: 103.7 Kg
06 Dec 12
Starting Weight: 106.3 Kg
Water Removed: 2.60 Kg
Ending Weight: 103.7 Kg
Aside from two days, my body continues to give too much water back, as my target is only hit twice in all of those treatments (tx's). I didn't mind this on Dec 1st when both kidneys were so painful. The extra give-back was definitely a good thing in helping to reduce the terrible pain.
I don't remember if I mentioned that a couple of weeks ago I received the third of the series of the Hepatitis inoculations. I think that is the last one I'll need for a long while.
Well, it's late, I'm tired, there's another round of dialysis in six hours, and I forgot what else I wanted to pass on. So...
Good Health to All!
ScottW
Wednesday, December 5, 2012
05 December 2012
I had something interesting happen on Monday (03 Dec).
On Sunday night when I did my nighttime weigh-in I saw that I had gained about seven pounds from the time I awoke. That was certainly odd in and of itself.
Then Monday, as the day progressed, the bilateral flank pain grew exponentially. I was taking two T3's at a time just to cap the pain; and even that was barely working. Looking at my back in the mirror there were two distinct large bumps over the kidneys. I couldn't sit back on anything without the pain increasing significantly. To say I was miserable all day would be a slight understatement. :o(
Then on Tuesday morning while doing dialysis, I weighed in at 107.5 kg--heavier at any time since my initial tx back in July. Even with my new dry weight (104.1 kg), the total being taken was planned at 3.9 kg (compensating for saline rinse back in tx). As the tx progressed I began noticing that the flank pain was easing up a bit. Near the end, I became so nauseated from the fluid loss that I nearly threw up! The nurse gave me a saline bolus of about 200 cc's and the nausea was alleviated.
As yesterday wore on, I noticed the flank pain was back to its normal intensity and overall pain level. However, I slept poorly because of excessive cramping in my lower legs and feet. Heat didn't help, nor did Icy Hot. I drank some water (about 12 oz), kept my feet warm and planted flat on the floor, and just waited for the cramping to ease up; which it eventually did. I looked in the mirror late last night and saw that the pronounced bumps over the kidneys were gone, too.
So, it seems that my kidneys took on a sudden--and very painful--water load which was only alleviated by dialysis. If this happens again, I will know it is a new normal, and that I must consider getting the dbl nephrectomy sooner than planned. We'll see. That decision would come down to advice from my Transplant Team.
I will definitely keep you updated if it looks like things are headed in that direction.
Had monthly labs drawn yesterday; but those numbers are not yet available. I will do another, detailed entry on Friday...or...at least I am planning on doing so. :o)
Good Health to All!
ScottW
On Sunday night when I did my nighttime weigh-in I saw that I had gained about seven pounds from the time I awoke. That was certainly odd in and of itself.
Then Monday, as the day progressed, the bilateral flank pain grew exponentially. I was taking two T3's at a time just to cap the pain; and even that was barely working. Looking at my back in the mirror there were two distinct large bumps over the kidneys. I couldn't sit back on anything without the pain increasing significantly. To say I was miserable all day would be a slight understatement. :o(
Then on Tuesday morning while doing dialysis, I weighed in at 107.5 kg--heavier at any time since my initial tx back in July. Even with my new dry weight (104.1 kg), the total being taken was planned at 3.9 kg (compensating for saline rinse back in tx). As the tx progressed I began noticing that the flank pain was easing up a bit. Near the end, I became so nauseated from the fluid loss that I nearly threw up! The nurse gave me a saline bolus of about 200 cc's and the nausea was alleviated.
As yesterday wore on, I noticed the flank pain was back to its normal intensity and overall pain level. However, I slept poorly because of excessive cramping in my lower legs and feet. Heat didn't help, nor did Icy Hot. I drank some water (about 12 oz), kept my feet warm and planted flat on the floor, and just waited for the cramping to ease up; which it eventually did. I looked in the mirror late last night and saw that the pronounced bumps over the kidneys were gone, too.
So, it seems that my kidneys took on a sudden--and very painful--water load which was only alleviated by dialysis. If this happens again, I will know it is a new normal, and that I must consider getting the dbl nephrectomy sooner than planned. We'll see. That decision would come down to advice from my Transplant Team.
I will definitely keep you updated if it looks like things are headed in that direction.
Had monthly labs drawn yesterday; but those numbers are not yet available. I will do another, detailed entry on Friday...or...at least I am planning on doing so. :o)
Good Health to All!
ScottW
Subscribe to:
Posts (Atom)
