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!
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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
Thursday, November 29, 2012
28 Nov 2012: Labs and a Quick Update
My labs, I am learning, are not all taken at the same time. So, I will be noting the dates of the lab draws next to the value so that you, the readers, know when each value was last measured.
*Albumin (19 Nov): 4.70 g/dL (+.30 g/dL from 16 Oct.)
*Hemoglobin (27 Nov): 11.60 g/dL (-.60 g/dL from 19 Nov.)
*Ca+ Corrected (06 Nov): 9.60 mg/dL (-.20 mg/dL from 02 Oct.)
*Phosphorous (06 Nov): 4.50 mg/dL (+.30 mg/dL from 02 Oct.)
*PTH Intact (19 Nov): 95 pg/mL (-21 pg/mL from 16 Oct.)
*K+ (Potassium) (19 Nov): 4.20 mEq/L (No Change from 16 Oct.)
*URR (06 Nov): 75% effective (+ 3% from 02 Oct.)
**CA+ = Calcium/ PTH = Parathyroid Hormone/ URR=Uremic Reduction Ratio
Good Numbers Bad Numbers
Next Tuesday, 04 Dec, I will have more labs drawn and will update those numbers as I get them--around the sixth, or so.
Yesterdays dialysis resulted in some nasty cramping in my ankles, feet and toes that really emerged while I was sleeping. Even under my electric blanket the cramping set in hard! I put on Icy-Hot ointment to help settle it down, as well as getting up and walking. Even though standing on my feet was terrible, it helped the cramping ease off as direct muscle pressure relieved the cramping. I ended up putting on my warm booties to keep both feet warm, then made sure I had my feet flat on the floor for hours that night.
Additionally, I am exhausted today. My day off and I feel like I have been drug through the ringer and left to just curl up and wither away. No energy, no stamina at all--which is worse than normal!--and utter physical and mental exhaustion. And in five hours from right now, I get to do it all over again! Yippee!!! I am struggling a bit today because of this exhaustion. I don't feel like I got a break from the dialysis at all. Maybe Friday will be better! One can only hope.
My flanks continue to be terrible. Even sitting in my cushy chair has become painful, and quicker to reach that point. Again, pain meds to regulate a bit of relief...at least for a little while.
My headache after yesterdays Tx was ridiculous. At the end of the Tx I immediately took two T3's (instead of my usual one) and even two meds failed to minimize the headache much at all. Nasty painful!
Today was better, and I was able to avoid taking any meds for most of the day. But between my kidneys and the headache, I finally gave in at 500p in order to get both under control once more.
My appetite is still all over the place. I rarely eat anything for breakfast--nothing new there--and any lunches I eat (aside from Tx day) are minimal. My dinners range between small and filling; but again, no consistency in overall food or liquid intake.
My sleep has been all over the place. I am averaging about six hours at night, taking naps during the day, and feeling thoroughly exhausted all of the time. However, even when I do get eight or nine hours, I still awaken completely exhausted.
That's it for now. I need to get some sleep before dialysis...which is now less than five hours from now!
Good Health to All!
ScottW
P.s I took a self photo the other day to update a visual record of how this is affecting me physically. Here is the latest:
*Albumin (19 Nov): 4.70 g/dL (+.30 g/dL from 16 Oct.)
*Hemoglobin (27 Nov): 11.60 g/dL (-.60 g/dL from 19 Nov.)
*Ca+ Corrected (06 Nov): 9.60 mg/dL (-.20 mg/dL from 02 Oct.)
*Phosphorous (06 Nov): 4.50 mg/dL (+.30 mg/dL from 02 Oct.)
*PTH Intact (19 Nov): 95 pg/mL (-21 pg/mL from 16 Oct.)
*K+ (Potassium) (19 Nov): 4.20 mEq/L (No Change from 16 Oct.)
*URR (06 Nov): 75% effective (+ 3% from 02 Oct.)
**CA+ = Calcium/ PTH = Parathyroid Hormone/ URR=Uremic Reduction Ratio
Good Numbers Bad Numbers
Next Tuesday, 04 Dec, I will have more labs drawn and will update those numbers as I get them--around the sixth, or so.
Yesterdays dialysis resulted in some nasty cramping in my ankles, feet and toes that really emerged while I was sleeping. Even under my electric blanket the cramping set in hard! I put on Icy-Hot ointment to help settle it down, as well as getting up and walking. Even though standing on my feet was terrible, it helped the cramping ease off as direct muscle pressure relieved the cramping. I ended up putting on my warm booties to keep both feet warm, then made sure I had my feet flat on the floor for hours that night.
Additionally, I am exhausted today. My day off and I feel like I have been drug through the ringer and left to just curl up and wither away. No energy, no stamina at all--which is worse than normal!--and utter physical and mental exhaustion. And in five hours from right now, I get to do it all over again! Yippee!!! I am struggling a bit today because of this exhaustion. I don't feel like I got a break from the dialysis at all. Maybe Friday will be better! One can only hope.
My flanks continue to be terrible. Even sitting in my cushy chair has become painful, and quicker to reach that point. Again, pain meds to regulate a bit of relief...at least for a little while.
My headache after yesterdays Tx was ridiculous. At the end of the Tx I immediately took two T3's (instead of my usual one) and even two meds failed to minimize the headache much at all. Nasty painful!
Today was better, and I was able to avoid taking any meds for most of the day. But between my kidneys and the headache, I finally gave in at 500p in order to get both under control once more.
My appetite is still all over the place. I rarely eat anything for breakfast--nothing new there--and any lunches I eat (aside from Tx day) are minimal. My dinners range between small and filling; but again, no consistency in overall food or liquid intake.
My sleep has been all over the place. I am averaging about six hours at night, taking naps during the day, and feeling thoroughly exhausted all of the time. However, even when I do get eight or nine hours, I still awaken completely exhausted.
That's it for now. I need to get some sleep before dialysis...which is now less than five hours from now!
Good Health to All!
ScottW
P.s I took a self photo the other day to update a visual record of how this is affecting me physically. Here is the latest:
Tuesday, November 20, 2012
20 November 2012
Alright, let's start with numbers:
10 Nov 12
-Starting Weight: 106.3 Kg
-Water Removed: 2.10 Kg
-Ending Weight: 104.2 Kg
13 Nov 12
-Starting Weight: 105.3 Kg
-Water Removed: 1.70 Kg
-Ending Weight: 103.6 Kg
15 Nov 12
-Starting Weight: 105.3 Kg
-Water Removed: 1.70 Kg
-Ending Weight: 103.6 Kg
17 Nov 12
-Starting Weight: 105.3 Kg
-Water Removed: 2.10 Kg
-Ending Weight: 103.2 Kg
19 Nov 12**
-Starting Weight: 105.4 Kg
-Water Removed: 2.30 Kg
-Ending Weight: 103.1 Kg
**Because of this weeks' U.S. Thanksgiving Holiday [on Thursday, 22 Nov], the normal rotation for dialysis is being altered as Davita is closed on Thursday for the Holiday. I will go on Wednesday morning, then return for my normally scheduled Tx on Saturday morning, then the following Tuesday as well when the normal schedule continues.
I do not have any current labs. The latest were drawn yesterday, but those numbers are not yet available. I will either list them on my next entry, or I will amend this entry as soon as I have the results.
As always my headache is going, going, going... As of November 12th (I think), the headache is has now been continuous for three full years! Yeah, you read that correctly. Loads of fun, that one!
The bilateral flank pain is continuous, with no let-up from day to day. I am still keeping the pain in check with meds, but that is merely masking the pain and there is no other Tx for it besides pulling the kidneys out.
My sleep is still all over the place again. The amount I sleep at night varies from 3-9 hours, and may or may not include naps; no matter how much or how little sleep I get. I know this is affecting my overall exhaustion level, but I can't think of anything to help me sleep more consistent hours.
I got some very good, and very unexpected news the other day. My Grandmother in-law is turning 100 Y/O in February, and she wants all grandkids and spouses to go on a three day cruise to the Bahamas! I called my Transplant Coordinator this morning to get clearance--or not--and was told that as long as I am not on the Status 1 Recipient List (Active), the cruise will be no problem. This is also assuming I won't have to have my kidney removal before then, either. So, barring anything major, I will be going on my first ever cruise in late February! Should be a last bit of fun before things get serious with the whole transplant thing.
Working out the dialysis schedule should not be an issue either. There are Davita clinics in the Orlando area (where we will be staying pre and post cruise), so treatments will be available for me.
That's all I can remember today.
Good Health to All!
ScottW
10 Nov 12
-Starting Weight: 106.3 Kg
-Water Removed: 2.10 Kg
-Ending Weight: 104.2 Kg
13 Nov 12
-Starting Weight: 105.3 Kg
-Water Removed: 1.70 Kg
-Ending Weight: 103.6 Kg
15 Nov 12
-Starting Weight: 105.3 Kg
-Water Removed: 1.70 Kg
-Ending Weight: 103.6 Kg
17 Nov 12
-Starting Weight: 105.3 Kg
-Water Removed: 2.10 Kg
-Ending Weight: 103.2 Kg
19 Nov 12**
-Starting Weight: 105.4 Kg
-Water Removed: 2.30 Kg
-Ending Weight: 103.1 Kg
**Because of this weeks' U.S. Thanksgiving Holiday [on Thursday, 22 Nov], the normal rotation for dialysis is being altered as Davita is closed on Thursday for the Holiday. I will go on Wednesday morning, then return for my normally scheduled Tx on Saturday morning, then the following Tuesday as well when the normal schedule continues.
I do not have any current labs. The latest were drawn yesterday, but those numbers are not yet available. I will either list them on my next entry, or I will amend this entry as soon as I have the results.
As always my headache is going, going, going... As of November 12th (I think), the headache is has now been continuous for three full years! Yeah, you read that correctly. Loads of fun, that one!
The bilateral flank pain is continuous, with no let-up from day to day. I am still keeping the pain in check with meds, but that is merely masking the pain and there is no other Tx for it besides pulling the kidneys out.
My sleep is still all over the place again. The amount I sleep at night varies from 3-9 hours, and may or may not include naps; no matter how much or how little sleep I get. I know this is affecting my overall exhaustion level, but I can't think of anything to help me sleep more consistent hours.
I got some very good, and very unexpected news the other day. My Grandmother in-law is turning 100 Y/O in February, and she wants all grandkids and spouses to go on a three day cruise to the Bahamas! I called my Transplant Coordinator this morning to get clearance--or not--and was told that as long as I am not on the Status 1 Recipient List (Active), the cruise will be no problem. This is also assuming I won't have to have my kidney removal before then, either. So, barring anything major, I will be going on my first ever cruise in late February! Should be a last bit of fun before things get serious with the whole transplant thing.
Working out the dialysis schedule should not be an issue either. There are Davita clinics in the Orlando area (where we will be staying pre and post cruise), so treatments will be available for me.
That's all I can remember today.
Good Health to All!
ScottW
Sunday, November 18, 2012
My Occasional Reminder
I was reading over the last few entries of my blog and realized that it has been a while since I reminded you, my readers, that this blog represents my individual experience with PCKD.
Another patient of similar age and health might experience a journey completely different and wholly their own. How any patient reacts to this disease; how they might progress; how they might react to meds, Tx's, etc is purely an individual thing.
This blog illustrates my journey alone. If you are fighting this disease, please rely on the training and expertise of your physicians and other health care professionals to assist you down this path. Only they will know best how to treat and manage your condition!
Thank you all for your continued support and readership.
ScottW
Another patient of similar age and health might experience a journey completely different and wholly their own. How any patient reacts to this disease; how they might progress; how they might react to meds, Tx's, etc is purely an individual thing.
This blog illustrates my journey alone. If you are fighting this disease, please rely on the training and expertise of your physicians and other health care professionals to assist you down this path. Only they will know best how to treat and manage your condition!
Thank you all for your continued support and readership.
ScottW
Thursday, November 15, 2012
15 November 2012
I had a follow-up visit with my Nephrologist yesterday--just a regular two month appointment to be sure he's on the same page as the dialysis center and the Transplant team.
My vitals all look great! My heart and lungs remain healthy, and he is pleased with how I am doing (overall) with the dialysis Tx's. He said, "Now that you're on dialysis, you are a very low maintenance patient." I will take that compliment! :o)
I was also telling him about how painful both flanks [of my back] have become. He told me "that's because my kidneys are about this size (he holds his hands apart to indicate that they kidneys are about the size of a small football--or rugby ball for you international readers)." "Both of them?" "No, that would be each kidney!"
No wonder my back hurts so badly! OUCH!!!
If that doesn't clearly illustrate why my kidneys will be removed, then I don't know how to better explain it.
Anyhow, everything is looking good. No changes in my meds in either dosages or individual meds. Unless something happens, he doesn't need to see me for three months, this time.
That's all I wanted to pass on.
Good Health to All!
ScottW
My vitals all look great! My heart and lungs remain healthy, and he is pleased with how I am doing (overall) with the dialysis Tx's. He said, "Now that you're on dialysis, you are a very low maintenance patient." I will take that compliment! :o)
I was also telling him about how painful both flanks [of my back] have become. He told me "that's because my kidneys are about this size (he holds his hands apart to indicate that they kidneys are about the size of a small football--or rugby ball for you international readers)." "Both of them?" "No, that would be each kidney!"
No wonder my back hurts so badly! OUCH!!!
If that doesn't clearly illustrate why my kidneys will be removed, then I don't know how to better explain it.
Anyhow, everything is looking good. No changes in my meds in either dosages or individual meds. Unless something happens, he doesn't need to see me for three months, this time.
That's all I wanted to pass on.
Good Health to All!
ScottW
Friday, November 9, 2012
09 November 2012
It has been twenty days since my last regular entry. Time to get caught up.
My Dialysis Weight Numbers:
20 Oct 2012
Starting Weight: 106.0 Kg
Water Removed: 3.10 Kg
Ending Weight: 102.9 Kg
22 Oct 2012
Starting Weight: 105.4 Kg
Water Removed: 2.50 Kg
Ending Weight: 102.9 Kg
25 Oct 2012
Starting Weight: 104.5 Kg
Water Removed: 1.30 Kg
Ending Weight: 103.4 Kg
27 Oct 2012
Starting Weight: 105.2 Kg
Water Removed: 1.80 Kg
Ending Weight: 103.4 Kg
30 Oct 2012
Starting Weight: 105.0 Kg
Water Removed: 1.60 Kg
Ending Weight: 103.4 Kg
01 Nov 2012
Starting Weight: 105.1 Kg
Water Removed: 2.20 Kg
Ending Weight: 102.9 Kg
03 Nov 2012
Starting Weight: 106.3 Kg
Water Removed: 3.10 Kg
Ending Weight: 103.2 Kg
06 Nov 2012
Starting Weight: 105.3 Kg
Water Removed: 2.30 Kg
Ending Weight: 102.9 Kg
08 Nov 2012
Starting Weight: 105.5 Kg
Water Removed: 1.60 Kg
Ending Weight: 103.9 Kg
As you can see, my weight fluctuations have been fairly consistent, as has my base weight. For now, any time I go lower than 103.0 Kg's, I have a lot of cramping, soreness and exhaustion all over my body. Yesterday, in spite of ending at 103.9 Kg, I was horribly sore and crampy all day. I am still feeling it today, as well. I don't know why this has happened. There are no changes in appetite, liquid intake; I'm not feeling sick at all.
My Labs--taken at Davita--have also been consistent. The following are my latest labs, drawn 06 Nov 2012:
= Good =Bad
*Albumin 4.4 G/dL (no movement)
*Hemoglobin 11.8 G/dL (+.2)
*Calcium Corrected 9.6 mg/dL (no movement)
*Phosphorous 4.5 mg/dL (+.3)
*PTH Intact 116 mg/mL (no movement)
*K+ (Potassium) 4.2 mEq/L (no movement)
*URR (Uremic Reduction Ratio) 75% (+3%)
The headache has been going up and down. It remains severe on D-day, but waffles between bad and minor on the off days. In all I am averaging three T3's per day over the past month. Though not great, I will still take that over the six or so a day I was averaging before I started dialysis.
My appetite has been OK. Nothing really to report on that front.
My sleep has been all over the place--nothing new there! Along with increased exhaustion--presumably from my kidneys losing function--I am not sleeping in any regular or predictable patterns again. I am taking more naps again, sleeping short hours, then long, then short, then moderate...you the point. I do know that a part of this is my bilateral flank pain.
The area of my back over both kidneys has been downright painful 24/7. The cysts on my kidneys are really causing problems. Sitting, laying, standing...it doesn't matter. That pain is very prominent no matter what I am doing. Dialysis can be excruciating because I can't get up and move around in order to relieve the pain. I am now always sitting (rather than laying) during the treatment so I reduce the pressure exerted on the kidneys. This makes little difference, however. I won't take meds for it because, well, I am on dialysis; and any meds taken will just get filtered out and have no effect. If the pain worsens to intolerable, I may have the double nephrectomy sooner than planned.
That's all for now. I am tired, sleepy and I just forgot what else I had wanted to update you with. So...
Good Health to All!
ScottW
My Dialysis Weight Numbers:
20 Oct 2012
Starting Weight: 106.0 Kg
Water Removed: 3.10 Kg
Ending Weight: 102.9 Kg
22 Oct 2012
Starting Weight: 105.4 Kg
Water Removed: 2.50 Kg
Ending Weight: 102.9 Kg
25 Oct 2012
Starting Weight: 104.5 Kg
Water Removed: 1.30 Kg
Ending Weight: 103.4 Kg
27 Oct 2012
Starting Weight: 105.2 Kg
Water Removed: 1.80 Kg
Ending Weight: 103.4 Kg
30 Oct 2012
Starting Weight: 105.0 Kg
Water Removed: 1.60 Kg
Ending Weight: 103.4 Kg
01 Nov 2012
Starting Weight: 105.1 Kg
Water Removed: 2.20 Kg
Ending Weight: 102.9 Kg
03 Nov 2012
Starting Weight: 106.3 Kg
Water Removed: 3.10 Kg
Ending Weight: 103.2 Kg
06 Nov 2012
Starting Weight: 105.3 Kg
Water Removed: 2.30 Kg
Ending Weight: 102.9 Kg
08 Nov 2012
Starting Weight: 105.5 Kg
Water Removed: 1.60 Kg
Ending Weight: 103.9 Kg
As you can see, my weight fluctuations have been fairly consistent, as has my base weight. For now, any time I go lower than 103.0 Kg's, I have a lot of cramping, soreness and exhaustion all over my body. Yesterday, in spite of ending at 103.9 Kg, I was horribly sore and crampy all day. I am still feeling it today, as well. I don't know why this has happened. There are no changes in appetite, liquid intake; I'm not feeling sick at all.
My Labs--taken at Davita--have also been consistent. The following are my latest labs, drawn 06 Nov 2012:
= Good =Bad
*Albumin 4.4 G/dL (no movement)
*Hemoglobin 11.8 G/dL (+.2)
*Calcium Corrected 9.6 mg/dL (no movement)
*Phosphorous 4.5 mg/dL (+.3)
*PTH Intact 116 mg/mL (no movement)
*K+ (Potassium) 4.2 mEq/L (no movement)
*URR (Uremic Reduction Ratio) 75% (+3%)
The headache has been going up and down. It remains severe on D-day, but waffles between bad and minor on the off days. In all I am averaging three T3's per day over the past month. Though not great, I will still take that over the six or so a day I was averaging before I started dialysis.
My appetite has been OK. Nothing really to report on that front.
My sleep has been all over the place--nothing new there! Along with increased exhaustion--presumably from my kidneys losing function--I am not sleeping in any regular or predictable patterns again. I am taking more naps again, sleeping short hours, then long, then short, then moderate...you the point. I do know that a part of this is my bilateral flank pain.
The area of my back over both kidneys has been downright painful 24/7. The cysts on my kidneys are really causing problems. Sitting, laying, standing...it doesn't matter. That pain is very prominent no matter what I am doing. Dialysis can be excruciating because I can't get up and move around in order to relieve the pain. I am now always sitting (rather than laying) during the treatment so I reduce the pressure exerted on the kidneys. This makes little difference, however. I won't take meds for it because, well, I am on dialysis; and any meds taken will just get filtered out and have no effect. If the pain worsens to intolerable, I may have the double nephrectomy sooner than planned.
That's all for now. I am tired, sleepy and I just forgot what else I had wanted to update you with. So...
Good Health to All!
ScottW
Waiting List
It's official...
As of this past Tuesday, 06 Nov 2012, I have been placed on the UNOS National Transplant Waiting list, Status 7. Again, this means that my status is 'inactive' because I still need to do the Colonoscopy, the Dental Clearance and have both kidneys removed--a Double Nephrectomy--and the associated healing time.
After that happens, my status will be 'Active' and all the time between now and then will be applied and I will be bumped up the list rather than starting from zero.
So, another GREAT news day, for me.
ScottW
Here is the letter:
As of this past Tuesday, 06 Nov 2012, I have been placed on the UNOS National Transplant Waiting list, Status 7. Again, this means that my status is 'inactive' because I still need to do the Colonoscopy, the Dental Clearance and have both kidneys removed--a Double Nephrectomy--and the associated healing time.
After that happens, my status will be 'Active' and all the time between now and then will be applied and I will be bumped up the list rather than starting from zero.
So, another GREAT news day, for me.
ScottW
Here is the letter:
Wednesday, November 7, 2012
UNOS
United Network for Organ Sharing.
With my going on the inactive transplant recipient list this week, I thought it timely to educate myself and my readers about this organization and all of the good they do.
Located at www.unos.org this is a non-profit organization dedicated solely to the patients of organ transplant and their education and well-being.
The resources they offer to transplant patients, living donors and other is extraordinary. There are numerous links to a multitude of information.
*I am also going to put a link to UNOS on the Left side of this blog under the 'Helpful Renal Websites' heading. So please, go take a look at it if you have questions or are simply curious.
Good health to All.
With my going on the inactive transplant recipient list this week, I thought it timely to educate myself and my readers about this organization and all of the good they do.
Located at www.unos.org this is a non-profit organization dedicated solely to the patients of organ transplant and their education and well-being.
The resources they offer to transplant patients, living donors and other is extraordinary. There are numerous links to a multitude of information.
*I am also going to put a link to UNOS on the Left side of this blog under the 'Helpful Renal Websites' heading. So please, go take a look at it if you have questions or are simply curious.
Good health to All.
Friday, November 2, 2012
News!
I received some great news today!
My Transplant Coordinator, Mayra, called me this afternoon. She had met with the Transplant Medical Director to discuss my case.
Because I won't turn 50 until January, my insurance apparently will not cover the colonoscopy. Because of that, the Medical Director gave the authorization for me to be placed on the "Inactive Transplant List" so that I can begin accruing time on the list while I wait for my birthday. In the mean time, I need to get the Dental Clearance finished.
Once the two requisites are out of the way, I will be placed on the "Active Transplant Recipient" list and my accrued time will put me further up the list.
Then, I need to do the double Nephrectomy so that all healing can occur should a kidney become available--or a living donor is all lined up.
Officially, the listing will happen early next week.
So, GREAT news for me!
It's been a long road thus far, but the light at the end of the tunnel just got a bit brighter!
Great Health to All!
ScottW
My Transplant Coordinator, Mayra, called me this afternoon. She had met with the Transplant Medical Director to discuss my case.
Because I won't turn 50 until January, my insurance apparently will not cover the colonoscopy. Because of that, the Medical Director gave the authorization for me to be placed on the "Inactive Transplant List" so that I can begin accruing time on the list while I wait for my birthday. In the mean time, I need to get the Dental Clearance finished.
Once the two requisites are out of the way, I will be placed on the "Active Transplant Recipient" list and my accrued time will put me further up the list.
Then, I need to do the double Nephrectomy so that all healing can occur should a kidney become available--or a living donor is all lined up.
Officially, the listing will happen early next week.
So, GREAT news for me!
It's been a long road thus far, but the light at the end of the tunnel just got a bit brighter!
Great Health to All!
ScottW
Newsletter: Healthcare Reform and Your Transplant
The following newsletter is produced by Astellas Pharmaceuticals for their educational division called The Transplant Experience. Their goal is to educate pre and post transplant patients regarding the vast amount of information involved in organ transplantation.
Healthcare Reform and Your Transplant
Healthcare Reform and Your Transplant
As you plan for your transplant, it's a good idea to also plan how you will cover the costs of your transplant medications (also called immunosuppressants).1 Taking these medications exactly as your transplant team recommends is critical to protecting your transplanted organ. It is essential that you understand what your insurance covers, so you can be better prepared for the time when you need to access these important medications, for as long as you need them.
What impact will healthcare reform have on my medication coverage?
The goal of healthcare reform, also referred to as the Patient Protection and Affordable Care Act, is to ensure that all Americans have access to quality, affordable healthcare.2 Since it was passed in 2010, there have been a number of changes to medication coverage that you may need to be aware of, with more changes occurring each year until 2020.
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Medicaid: expanded eligibility
In some states, Medicaid may be expanded to include people with incomes up to 133% of the federal poverty level. This means that people who may not have been eligible for Medicaid in the past may now be eligible. Note that Medicaid coverage is state specific and you will need to check your state Medicaid eligibility requirements. That said, look for potential changes to your state's Medicaid coverage to take place by 2014.3
To find out more about Medicaid and eligibility requirements, visit www.cms.gov.
Medicare: closing of the "donut hole"
By the year 2020, Medicare Part D beneficiaries will no longer have to worry about the donut hole, as it will no longer exist.4 That may feel like a long time to wait, but know that valuable steps have already been taken to reduce the burden of this coverage gap1,2:
Medicare: efforts to extend coverage of immunosuppressants
As it currently stands, Medicare offers lifetime coverage for immunosuppressants, but only under specific circumstances, such as having your transplant at a Medicare-approved hospital, and being age 65 years or older and/or being disabled.5 However, for reasons that cannot be easily explained, Medicare coverage based solely on end-stage renal disease ends 36 months after transplantation. The healthcare reform bill initially contained language that would do away with this limitation, but the language was taken out before it passed into law. The National Kidney Foundation, the American Society of Transplant Surgeons and key members of Congress remain committed to having this limitation removed for the sole purpose of ensuring that kidney transplant recipients continue to receive coverage for the medications critical to their health.4,6
The Affordable Care Act and private insurance
If you have private insurance, here are a few ways you, too, may be affected by the healthcare reform2,7:
Every plan is different, so be sure to ask your insurance provider about how these changes might affect your individual plan.
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If you are struggling to pay for your medications, there are resources beyond government programs or private insurance that may be available to you. These include programs offered by pharmaceutical companies. For financial assistance on Astellas medications, such as Prograf® (tacrolimus) capsules, you can enroll in the Prograf: Value Card* program or visit www.astellasaccess.com to explore your medication coverage options.
 As I always point out, the information I have received from The Transplant Experience has been completely invaluable! Remember, as a patient, the more you know, the less fear and uncertainty you will have; and your ability to cope with everything will be far greater. So read, study, learn, ask questions...really understand the process. This approach has helped me far more than I can adequately convey! ScottW | ||||||||||||||
Friday, October 19, 2012
19 October 2012
It's now been twelve days since my last entry on how things are going day to day, so I thought I'd take the time and get you caught up.
Like usual, I'll begin with my dialysis weight changes:
08 October
Starting Weight: 105.5 Kg
Water removed: 2.90 Kg
Ending Weight: 102.6 Kg
11 October
Starting Weight: 103.7 Kg
Water Removed: 0.50 Kg
Ending Weight: 103.2 Kg
13 October
Starting Weight: 104.6 Kg
Water Removed: 0.90 Kg
Ending Weight: 103.7 Kg
16 October
Starting Weight: 105.6 Kg
Water Removed: 1.90 Kg
Ending Weight: 103.7 Kg
18 October
Starting Weight: 106.4 Kg
Water Removed: 3.20 Kg
Ending Weight: 103.2 Kg
Overall my weight is staying fairly consistent; which is good. My legs are doing well with the dialysis so long as we don't take too much water, or I don't walk much following the treatment. If either happens, then both legs cramp as do the feet and toes making sleep nearly impossible--I found that one out the hard way. :o(
The headache, though ever present, continues to be reduced on my off days, then severe on d-days. I just remember what my neurologist said...that the fluid shift that happens during dialysis can cause a bad headache. No matter what though, I'll take the reduced headache; now at 35 months and counting.
My appetite has been swinging around going from poor to famished. Dialysis days find me feeling like I haven't eaten in days. My off days find me barely snacking during the day, and eating only a moderate dinner. I am trying to balance that out by eating roughly the same amount both days...but no luck accomplishing that just yet.
My sleep has been better. I had been having dreams again involving loss of control; but this time I was able to wake myself out of the dreams. Unfortunately, I was unable to get back to sleep, causing greater sleepiness than usual. This went on for about two weeks, but a week ago I was finally able to assert my conscious will onto my subconscious and I regained control of my dreams. Until I have the transplant, I believe this will be an ongoing struggle as my brain works through the stress and uncertainty of everything.
My weekly labs have been showing consistent numbers. Here they are for the last two weeks:
09 October: 16 October:
*Albumin 4.6 g/dL 4.4 g/dL
*Hemoglobin 11.9 g/dL 11.9 g/dL
*Calcium Corrected 9.8 mg/dL 9.8 mg/dL
*Phosphorous 4.2 mg/dL 4.2 mg/dL
*PTH Intact 101 pg/mL 116 pg/mL
*K+ (Potassium) 4.3 mEq/mL 4.2 mEq/mL
*URR (Dialysis effectiveness) 72% 72 %
With my Hemoglobin staying low I continue to receive Iron injections [through the return tubing] during dialysis. As of yesterdays Tx, I have had twelve Iron infusions in a row.
My energy level continues to be marginal, at best. I still use up what energy I have doing housework and maybe...a personal project, too. Today, I am writing this post for my "extra" thing. After this I get to go make dinner, and then my energy will be gone.
The characteristics of my urine are pretty consistent. Low foaminess--a great thing!--lighter color, and a consistent flow. About the only variation to this is when I awaken after a night of sleep. The urine is always darker then...don't ask me why, it just is.
The bilateral flank pain is constantly present, constantly painful. Moving around a little helps this to be tolerable. During dialysis, when I can't get up and move around, the pain gets to be quite nasty. I'd take something for it, but the med would just get filtered out leaving me in as much pain as before. I am already sitting up during the whole Tx every day, so there isn't anything to be done but wait for the Tx to finish so I can take a med for it...and for the headache.
That's all I can remember for today. I am again forgetting something I wanted to tell you about. Ah well. C'est La Vie.
Good Health to All!
ScottW
Like usual, I'll begin with my dialysis weight changes:
08 October
Starting Weight: 105.5 Kg
Water removed: 2.90 Kg
Ending Weight: 102.6 Kg
11 October
Starting Weight: 103.7 Kg
Water Removed: 0.50 Kg
Ending Weight: 103.2 Kg
13 October
Starting Weight: 104.6 Kg
Water Removed: 0.90 Kg
Ending Weight: 103.7 Kg
16 October
Starting Weight: 105.6 Kg
Water Removed: 1.90 Kg
Ending Weight: 103.7 Kg
18 October
Starting Weight: 106.4 Kg
Water Removed: 3.20 Kg
Ending Weight: 103.2 Kg
Overall my weight is staying fairly consistent; which is good. My legs are doing well with the dialysis so long as we don't take too much water, or I don't walk much following the treatment. If either happens, then both legs cramp as do the feet and toes making sleep nearly impossible--I found that one out the hard way. :o(
The headache, though ever present, continues to be reduced on my off days, then severe on d-days. I just remember what my neurologist said...that the fluid shift that happens during dialysis can cause a bad headache. No matter what though, I'll take the reduced headache; now at 35 months and counting.
My appetite has been swinging around going from poor to famished. Dialysis days find me feeling like I haven't eaten in days. My off days find me barely snacking during the day, and eating only a moderate dinner. I am trying to balance that out by eating roughly the same amount both days...but no luck accomplishing that just yet.
My sleep has been better. I had been having dreams again involving loss of control; but this time I was able to wake myself out of the dreams. Unfortunately, I was unable to get back to sleep, causing greater sleepiness than usual. This went on for about two weeks, but a week ago I was finally able to assert my conscious will onto my subconscious and I regained control of my dreams. Until I have the transplant, I believe this will be an ongoing struggle as my brain works through the stress and uncertainty of everything.
My weekly labs have been showing consistent numbers. Here they are for the last two weeks:
09 October: 16 October:
*Albumin 4.6 g/dL 4.4 g/dL
*Hemoglobin 11.9 g/dL 11.9 g/dL
*Calcium Corrected 9.8 mg/dL 9.8 mg/dL
*Phosphorous 4.2 mg/dL 4.2 mg/dL
*PTH Intact 101 pg/mL 116 pg/mL
*K+ (Potassium) 4.3 mEq/mL 4.2 mEq/mL
*URR (Dialysis effectiveness) 72% 72 %
With my Hemoglobin staying low I continue to receive Iron injections [through the return tubing] during dialysis. As of yesterdays Tx, I have had twelve Iron infusions in a row.
My energy level continues to be marginal, at best. I still use up what energy I have doing housework and maybe...a personal project, too. Today, I am writing this post for my "extra" thing. After this I get to go make dinner, and then my energy will be gone.
The characteristics of my urine are pretty consistent. Low foaminess--a great thing!--lighter color, and a consistent flow. About the only variation to this is when I awaken after a night of sleep. The urine is always darker then...don't ask me why, it just is.
The bilateral flank pain is constantly present, constantly painful. Moving around a little helps this to be tolerable. During dialysis, when I can't get up and move around, the pain gets to be quite nasty. I'd take something for it, but the med would just get filtered out leaving me in as much pain as before. I am already sitting up during the whole Tx every day, so there isn't anything to be done but wait for the Tx to finish so I can take a med for it...and for the headache.
That's all I can remember for today. I am again forgetting something I wanted to tell you about. Ah well. C'est La Vie.
Good Health to All!
ScottW
Thursday, October 11, 2012
10 October 2012
My appointment yesterday went extremely well.
The class, a further education about transplant, meds, the psychology of it, etc was great information; although, with all the studying I have done, there weren't any points brought up that I did not already know about. I also had to sign more paperwork--mostly policies and understandings--which was no big deal. I also got to a brief meet with Mayra, my Transplant coordinator.
I had to leave the class part a bit early because of the scheduled Thallium Cardiac Stress test. Having never been through one of these I did not know what exactly to expect. The cardiac nurses however, made the experience quite comfortable and extremely informative.
To start--well, after the usual insurance stuff--I was taken to an exam room where all the vitals were taken and an IV was placed in my R forearm. A bit of nuclear isotopes were injected through the IV and I was taken to an imaging room and placed on a new scanner that better images the heart with improved thoroughness 360 degrees. I had to hold still for seventeen minutes.
Once completed, I was asked to change into shorts (no shirt) and was hooked up to a 12-Lead ECG. They took a look on this--which, by the way, looked great! My QRS and P-Wave look awesome!-- then placed me on a slow treadmill for three minutes.
After one minute I was injected with a vasodilator that impacts the muscles, as well. My legs suddenly got very heavy, and my breathing was labored. This lasted the remaining two minutes of treadmill time. (All this while I was still hooked up to the ECG 12-Lead).
Once the treadmill was completed, the 12-Leads were removed (All except three), and I was given about ten minutes to recover from the test. The vasodilator was short-acting, and I was given the choice of several drinks and snacks to help my body recover.
Next, I was given another small dose of isotopes and then placed back of the imager I had laid on earlier. This time I was on it for fourteen minutes. Once done, I got dressed and was escorted to another exam room to wait for a cardiologist to talk to me about the results.
When he came in, the cardiologist explained what the test entailed, what they were looking for, etc. He told me, "For a man of your age, your heart is in GREAT shape." There is no plaque buildup anywhere on or in the vessels of the heart, the electrical conduction system of my heart is in excellent shape, and I have zero issues with any of the valves. So, I got a very clean bill of health from the cardiologist! (EXCELLENT news!!!)
Then this afternoon, I received a call from Mayra, and she stated that because my heart looks so good, the Transplant Physician Director, a Dr. Stimson, said that would need "no further cardiac tests of any kind."
So, a great day of news! I now have only two more requisites to do, plus the double nephrectomy, and I will be ready for transplant! Woo-Hoo!!! :o)
(I will let you know about the other requisites as I get them finished!)
Good Health to All!
ScottW
The class, a further education about transplant, meds, the psychology of it, etc was great information; although, with all the studying I have done, there weren't any points brought up that I did not already know about. I also had to sign more paperwork--mostly policies and understandings--which was no big deal. I also got to a brief meet with Mayra, my Transplant coordinator.
I had to leave the class part a bit early because of the scheduled Thallium Cardiac Stress test. Having never been through one of these I did not know what exactly to expect. The cardiac nurses however, made the experience quite comfortable and extremely informative.
To start--well, after the usual insurance stuff--I was taken to an exam room where all the vitals were taken and an IV was placed in my R forearm. A bit of nuclear isotopes were injected through the IV and I was taken to an imaging room and placed on a new scanner that better images the heart with improved thoroughness 360 degrees. I had to hold still for seventeen minutes.
Once completed, I was asked to change into shorts (no shirt) and was hooked up to a 12-Lead ECG. They took a look on this--which, by the way, looked great! My QRS and P-Wave look awesome!-- then placed me on a slow treadmill for three minutes.
After one minute I was injected with a vasodilator that impacts the muscles, as well. My legs suddenly got very heavy, and my breathing was labored. This lasted the remaining two minutes of treadmill time. (All this while I was still hooked up to the ECG 12-Lead).
Once the treadmill was completed, the 12-Leads were removed (All except three), and I was given about ten minutes to recover from the test. The vasodilator was short-acting, and I was given the choice of several drinks and snacks to help my body recover.
Next, I was given another small dose of isotopes and then placed back of the imager I had laid on earlier. This time I was on it for fourteen minutes. Once done, I got dressed and was escorted to another exam room to wait for a cardiologist to talk to me about the results.
When he came in, the cardiologist explained what the test entailed, what they were looking for, etc. He told me, "For a man of your age, your heart is in GREAT shape." There is no plaque buildup anywhere on or in the vessels of the heart, the electrical conduction system of my heart is in excellent shape, and I have zero issues with any of the valves. So, I got a very clean bill of health from the cardiologist! (EXCELLENT news!!!)
Then this afternoon, I received a call from Mayra, and she stated that because my heart looks so good, the Transplant Physician Director, a Dr. Stimson, said that would need "no further cardiac tests of any kind."
So, a great day of news! I now have only two more requisites to do, plus the double nephrectomy, and I will be ready for transplant! Woo-Hoo!!! :o)
(I will let you know about the other requisites as I get them finished!)
Good Health to All!
ScottW
Monday, October 8, 2012
07 October 2012
Things are going alright. Good days, bad days, and a lot of in-between days.
Weight Changes:
29 Sept 2012
Starting Weight: 105.2 Kg
Water Removed: 2.20 Kg
Ending Weight: 103.0 Kg
02 Oct 2012
Starting Weight: 105.7 Kg
Water Removed: 2.00 Kg
Ending Weight: 103.7 Kg
04 Oct 2012
Starting Weight: 106.4 Kg
Water Removed: 3.20 Kg
Ending Weight: 103.2 Kg
06 Oct 2012
Starting Weight: 105.2 Kg
Water Removed: 2.10 Kg
Ending Weight: 103.1 Kg
My weight remains in the same range all around. However, we can't hit my dry weight target. No one at the dialysis center has been able to hit it. I'm thinking of offering a giant chocolate bar to the first nurse or tech who can hit 103.5 kg's. That would make it fun for everyone!
Also, I finally just paid for that Lidocaine Cream after my Medicare turned down the coverage twice. I might still get a refund; but it doesn't matter because the stuff works! As instructed I apply it one hour before Tx (Treatment) and wrap the arm in cellophane. I apply about a dime's thickness on the fistula from an inch (or so) below the distal button hole to an inch (or so) above the proximal button hole, and about a half inch on eather side.
I am pleased to report that the canulation pain is reduced a good 90%, and, the stinging inside the fistula [after canulation] is completely gone! What a relief!!!
My appetite has been down this past week. I have also been feeling off most of the week, too. Plus, I have had really loose stools for nearly a week, as well. I figure that my body is going through one of those times that it is purging the intestines again. Assuming that is the case, my bowels should be settling down any day.
The headache, though ever present, is better...much better. All three off days last week were T3 free!
I did use regular Tylenol (2/500 mgs); but the headache has taken a major hit as far as overall pain level! On dialysis days the headache continues to spike; but even then I am taking two less doses (on average) on D-day than even a month ago. Today was an exception to this success. Because of trying to eat little in hopes of settling my intestines, the headache spiked again. However, I have 100% certainty that if I were feeling better, I would have had another T3 free day!
I had an appointment with the Neurologist this past Friday, told him the news about the headache, and he was so pleased that, in conjunction with my [recent] clean Cranial MRI, that the doc gave me neurological clearance! Yay!!! He is 100% certain that the headache is only associated with the onset of the S/S's of the kidney disease. He also stated that the fluid shift that occurs during dialysis commonly causes a headache; which explains the spike in pain during the Tx. GREAT news!!!
On a side note of great news, it seems that the effects of the now discontinued Minoxidil are finally wearing off...Thank Goodness! My knuckles no longer look like I'm a neanderthal, the hair on my head no longer sprouts like a weed patch in spring, and I am returning to my proud heritage of having very little chest or back hair. :o) (Hey! When you don't have much body hair your entire life, suddenly having a lot is maddening, to put it mildly!)
I am doing dialysis a day early to start the week. My Tx is scheduled for 4p Monday because I have to go up to the Murray, UT IHC Campus on Tuesday morning for two scheduled transplant requisites. I have the Transplant Education class at 0945a. This will last a couple of hours. I will let you know what it is all about.
Then at 1245p I have a Cardiac Thallium Stress Test. This test is simply to assure that I am having zero cardiac issues. Again, I will let you know about it.
I am also working on getting the Dental Exam/Clearance set up; which will just leave the colonoscopy to do, and I will be done with the Transplant requisites. After that, I need the double nephrectomy, and then, a living donor. We're getting there!
That's it for now! Have a great week.
I will write again to tell you about the Tuesday class/test.
Good Health to All!
ScottW
Weight Changes:
29 Sept 2012
Starting Weight: 105.2 Kg
Water Removed: 2.20 Kg
Ending Weight: 103.0 Kg
02 Oct 2012
Starting Weight: 105.7 Kg
Water Removed: 2.00 Kg
Ending Weight: 103.7 Kg
04 Oct 2012
Starting Weight: 106.4 Kg
Water Removed: 3.20 Kg
Ending Weight: 103.2 Kg
06 Oct 2012
Starting Weight: 105.2 Kg
Water Removed: 2.10 Kg
Ending Weight: 103.1 Kg
My weight remains in the same range all around. However, we can't hit my dry weight target. No one at the dialysis center has been able to hit it. I'm thinking of offering a giant chocolate bar to the first nurse or tech who can hit 103.5 kg's. That would make it fun for everyone!
Also, I finally just paid for that Lidocaine Cream after my Medicare turned down the coverage twice. I might still get a refund; but it doesn't matter because the stuff works! As instructed I apply it one hour before Tx (Treatment) and wrap the arm in cellophane. I apply about a dime's thickness on the fistula from an inch (or so) below the distal button hole to an inch (or so) above the proximal button hole, and about a half inch on eather side.
I am pleased to report that the canulation pain is reduced a good 90%, and, the stinging inside the fistula [after canulation] is completely gone! What a relief!!!
My appetite has been down this past week. I have also been feeling off most of the week, too. Plus, I have had really loose stools for nearly a week, as well. I figure that my body is going through one of those times that it is purging the intestines again. Assuming that is the case, my bowels should be settling down any day.
The headache, though ever present, is better...much better. All three off days last week were T3 free!
I did use regular Tylenol (2/500 mgs); but the headache has taken a major hit as far as overall pain level! On dialysis days the headache continues to spike; but even then I am taking two less doses (on average) on D-day than even a month ago. Today was an exception to this success. Because of trying to eat little in hopes of settling my intestines, the headache spiked again. However, I have 100% certainty that if I were feeling better, I would have had another T3 free day!
I had an appointment with the Neurologist this past Friday, told him the news about the headache, and he was so pleased that, in conjunction with my [recent] clean Cranial MRI, that the doc gave me neurological clearance! Yay!!! He is 100% certain that the headache is only associated with the onset of the S/S's of the kidney disease. He also stated that the fluid shift that occurs during dialysis commonly causes a headache; which explains the spike in pain during the Tx. GREAT news!!!
On a side note of great news, it seems that the effects of the now discontinued Minoxidil are finally wearing off...Thank Goodness! My knuckles no longer look like I'm a neanderthal, the hair on my head no longer sprouts like a weed patch in spring, and I am returning to my proud heritage of having very little chest or back hair. :o) (Hey! When you don't have much body hair your entire life, suddenly having a lot is maddening, to put it mildly!)
I am doing dialysis a day early to start the week. My Tx is scheduled for 4p Monday because I have to go up to the Murray, UT IHC Campus on Tuesday morning for two scheduled transplant requisites. I have the Transplant Education class at 0945a. This will last a couple of hours. I will let you know what it is all about.
Then at 1245p I have a Cardiac Thallium Stress Test. This test is simply to assure that I am having zero cardiac issues. Again, I will let you know about it.
I am also working on getting the Dental Exam/Clearance set up; which will just leave the colonoscopy to do, and I will be done with the Transplant requisites. After that, I need the double nephrectomy, and then, a living donor. We're getting there!
That's it for now! Have a great week.
I will write again to tell you about the Tuesday class/test.
Good Health to All!
ScottW
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