About fourteen days since I last wrote an entry, so let's get going.
As usual, I'll begin with the dialysis weights:
21 May 13
Starting Weight: 107.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 2.90 Kg
23 May 13
Starting Weight: 105.9 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.60 Kg
25 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.90 kg
28 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.70 Kg
30 May 13
Starting Weight: 105.1 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.00 Kg
01 Jun 13
Starting Weight: 106.2 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.90 Kg
Once again, consistency rules the day. I continue to work every day to limit my fluid intake, and those efforts are showing themselves with each dialysis treatment. *Right now, I am trying to limit myself to no more than about 45 Fl. Oz's per day, or so. Most days I do pretty well; other days, not so much. But even on the not so good days, I am extremely conscientious about not going overboard with the fluids. (Hey...you have to cheat once in a while just so you don't go crazy thirsty!)
In my last entry I noted that I haven't been feeling well...and that same trend has continued. My body is just struggling with being sick. Most days I have been dragging myself around with barely enough energy to be even slightly productive. Pushing through these times is hard! But, I know that if I don't, it will end up being detrimental to my overall health and well-being, let alone my state of mind. So, I push through it; even when doing so is the very last thing I have any inclination of doing.
My sleep has again been all over. My naps are fewer...again; but my nightly sleep hours are longer. On non-Dialysis nights I am getting between 9-11 hours, with no naps. On the nights before dialysis I am sleep four hours, then getting between 4-7 hours of sleep after the Tx. So, on the average dialysis day--between 12a and waking the following day--I am getting between 14-17 hours of sleep over about a 30 hour period. Even then I am still dragging around exhausted and not feeling well.
The headache is maintaining its elevated level. I'd estimate that it is a constant 8.5 on a 1-10 scale. And with the bilateral flank pain still going strong (and still lower on the kidneys), my T3 usage has increased to about four per day, on average. I know that I could always take more--according to the Rx--but I just don't want to! I'm blah enough as it is without adding anymore to it. So, I tolerate a lot of pain.
The incidences of nausea have decreased. In the past week I have only taken a few small doses of Promethazine (anti emetic). I will not complain about having less nausea!
One thing I never anticipated about dialysis is the constant state of healing the button-hole sites are in. As a result, the area around both sites is always itching, as healing tissue does. Up to this point I haven't tried to find anything that might reduce the itching other than scratching along both sides of the fistula. But, the scratching is beginning to irritate my skin, so, I'll probably be looking for some sort of salve or cream to help with this. I'll let you know what I come up with.
And...
Well, never mind. I suddenly forgot whatever else it was I had in mind.
C'est La Vie.
Good Health to All!
ScottW
Sunday, June 2, 2013
Sunday, May 19, 2013
18 May 2013
In the eleven days since my last full entry, I've had five dialysis sessions;
so, let's start there...
09 May 13
Starting Weight: 105.3 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.20 Kg
11 May 13
Starting Weight: 105.4 Kg
Ending Weight: 103.8 Kg
Water Removed: 1.60 Kg
14 May 13
Starting Weight: 105.6 Kg
Ending Weight: 103.5 Kg
Water Removed: 2.10 Kg
16 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.90 Kg
18 May 13
Starting Weight: 105.8 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.50 Kg
As you can clearly see, 'consistency' remains the word of the day when it comes to my dialysis weight management. You'll find absolutely no complaints from me!
A few weeks ago I began to notice a general numbing of the bottoms of both feet. At first it was just irritating. However, the numbness gradually increased its intensity, growing to uncomfortable; now, it is slightly painful. I have never had this happen, and since it is unusual for me, I decided to tell my nephrologist about it on Thursday when he came by my chair during his weekly dialysis rounds.
Besides the above info, I also told him that wearing shoes was becoming painful as well. He suggested I go see my chiropractor just to rule out spinal chord or nerve impingement. I'll go this coming week. He also prescribed a med in case the spinal adjustment doesn't solve the issue. In the cases of such Peripheral Neuropathy, a common Rx is the med Neurontin, aka Gabapentin. There are various adverse side effects--there always are!--but the common side effect I am most likely to notice is sleepiness and excessive tiredness. That certainly won't be anything new. ;o)
Anyhow, I will be titrating the dosage upward in order to find relief from the neuropathic pain. I will start out at 100 mg/day x 1/week. Then, 200 mg/day x 1/week. After that, if no relief has been achieved, we'll keep going up in dosage until relief occurs. Hopefully the chiropractic adjustment will do the trick. If not, then I'll start on the med right away.
I will, of course, fill you in on how the treatments go.
My headache, now forty two months long, and counting, has had a bit of a resurgence to a consistently higher pain level. As far as I'm aware, I haven't done anything to exacerbate the headache; it is just more painful than even a week ago.
My sleep is once again all over the place--no surprise there, eh? My naps are fewer, my nighttime sleep is still 8+ hours, but I am waking up a lot every night, and I am walking around unusually tired again. By now, I think we've learned that I just have to endure this cycle, and that soon enough, my sleep will readjust itself...again.
On the good news front, my incidences of diarrhea have actually decreased over the past month. I'm not doing anything different, it has just calmed down. I absolutely don't mind this correcting itself for a while!
My appetite and fluid intake remain the same since my last entry. I don't expect any changes in either area anytime soon.
My overall energy level is down again. No surprise there. I am doing less and resting more. Since moving to our new place last March I am having to walk more, which only does me good. But, even since moving in, I have had a noticeable drop in my energy level. I will keep an eye on this, looking for any ongoing loss of my energy.
And that...I think...is all I have for today.
Good Health to All!
ScottW
so, let's start there...
09 May 13
Starting Weight: 105.3 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.20 Kg
11 May 13
Starting Weight: 105.4 Kg
Ending Weight: 103.8 Kg
Water Removed: 1.60 Kg
14 May 13
Starting Weight: 105.6 Kg
Ending Weight: 103.5 Kg
Water Removed: 2.10 Kg
16 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.90 Kg
18 May 13
Starting Weight: 105.8 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.50 Kg
As you can clearly see, 'consistency' remains the word of the day when it comes to my dialysis weight management. You'll find absolutely no complaints from me!
A few weeks ago I began to notice a general numbing of the bottoms of both feet. At first it was just irritating. However, the numbness gradually increased its intensity, growing to uncomfortable; now, it is slightly painful. I have never had this happen, and since it is unusual for me, I decided to tell my nephrologist about it on Thursday when he came by my chair during his weekly dialysis rounds.
Besides the above info, I also told him that wearing shoes was becoming painful as well. He suggested I go see my chiropractor just to rule out spinal chord or nerve impingement. I'll go this coming week. He also prescribed a med in case the spinal adjustment doesn't solve the issue. In the cases of such Peripheral Neuropathy, a common Rx is the med Neurontin, aka Gabapentin. There are various adverse side effects--there always are!--but the common side effect I am most likely to notice is sleepiness and excessive tiredness. That certainly won't be anything new. ;o)
Anyhow, I will be titrating the dosage upward in order to find relief from the neuropathic pain. I will start out at 100 mg/day x 1/week. Then, 200 mg/day x 1/week. After that, if no relief has been achieved, we'll keep going up in dosage until relief occurs. Hopefully the chiropractic adjustment will do the trick. If not, then I'll start on the med right away.
I will, of course, fill you in on how the treatments go.
My headache, now forty two months long, and counting, has had a bit of a resurgence to a consistently higher pain level. As far as I'm aware, I haven't done anything to exacerbate the headache; it is just more painful than even a week ago.
My sleep is once again all over the place--no surprise there, eh? My naps are fewer, my nighttime sleep is still 8+ hours, but I am waking up a lot every night, and I am walking around unusually tired again. By now, I think we've learned that I just have to endure this cycle, and that soon enough, my sleep will readjust itself...again.
On the good news front, my incidences of diarrhea have actually decreased over the past month. I'm not doing anything different, it has just calmed down. I absolutely don't mind this correcting itself for a while!
My appetite and fluid intake remain the same since my last entry. I don't expect any changes in either area anytime soon.
My overall energy level is down again. No surprise there. I am doing less and resting more. Since moving to our new place last March I am having to walk more, which only does me good. But, even since moving in, I have had a noticeable drop in my energy level. I will keep an eye on this, looking for any ongoing loss of my energy.
And that...I think...is all I have for today.
Good Health to All!
ScottW
Friday, May 10, 2013
10 May 2013
As promised, the following are the numbers from my latest lab draw:
*Albumin (16 Apr): 4.50 g/dL (-0.20 from 02 Apr)
*Hemoglobin (30 Apr): 11.5 g/dL (+0.20 g/dL from 23 Apr)
*Ca Corrected (07 May): 9.50 mg/dL (+0.20 mg/dL from 02 Apr)
*Phosphorous (07 May): 5.00 mg/dL (- 0.1 mg/dL from 02 Apr)
*PTH Intact (16 Apr): 199 pg/mL (+60 pg/mL from 19 Mar)
*K+ (16 Apr): 4.0 mEq/L (+0.40 mEq/L from 19 Mar)
*spKdt/V Dialysis (07 May): 1.60 (+0.08 from 02 Apr)
Aside from the slight drop in Albumin, and the Hemoglobin remaining low (no surprise there!), ALL of my labs came back improved. I don't know how long this will last, but I will absolutely take results like these month after month.
It means I am eating properly, taking my vitamins as prescribed, drinking the proper fluids and getting to my scheduled dialysis treatments. It's not hard to do. As the patient, you simply have to decide to follow the instructions of your physician, Lead Dialysis nurse, and your nutritionist. Do that, and your numbers will look as good as they can!
That's it. Labs only today!
Good Health to All!
ScottW
*Albumin (16 Apr): 4.50 g/dL (-0.20 from 02 Apr)
*Hemoglobin (30 Apr): 11.5 g/dL (+0.20 g/dL from 23 Apr)
*Ca Corrected (07 May): 9.50 mg/dL (+0.20 mg/dL from 02 Apr)
*Phosphorous (07 May): 5.00 mg/dL (- 0.1 mg/dL from 02 Apr)
*PTH Intact (16 Apr): 199 pg/mL (+60 pg/mL from 19 Mar)
*K+ (16 Apr): 4.0 mEq/L (+0.40 mEq/L from 19 Mar)
*spKdt/V Dialysis (07 May): 1.60 (+0.08 from 02 Apr)
Aside from the slight drop in Albumin, and the Hemoglobin remaining low (no surprise there!), ALL of my labs came back improved. I don't know how long this will last, but I will absolutely take results like these month after month.
It means I am eating properly, taking my vitamins as prescribed, drinking the proper fluids and getting to my scheduled dialysis treatments. It's not hard to do. As the patient, you simply have to decide to follow the instructions of your physician, Lead Dialysis nurse, and your nutritionist. Do that, and your numbers will look as good as they can!
That's it. Labs only today!
Good Health to All!
ScottW
Tuesday, May 7, 2013
07 May 2013
See?
I'm only a week out since my last entry and here's my next one already.
Last week my dialysis weights were as follows:
02 May 13
Starting Weight: 105.9 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.80 Kg
04 May 13
Starting Weight: 105.7 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.40 Kg
07 May 13
Starting Weight: 105.8 Kg
Ending Weight: 104.5 Kg
Water Removed: 1.30 Kg
My weight remains steady both pre and post-dialysis. My efforts to control my liquid intake is definitely paying off. Yeah, I get thirsty...a lot! But again, if I had to do this suddenly after the nephrectomy, I would not be a happy camper. I'll take the discomfort of a little thirst right now. No big deal.
Over the past week I have experienced a rapid pain increase in both flanks again. This time however, the pain is at the bottom outside of both kidneys, instead of at the top.
I am sitting like I did when I had my back injury, just trying to keep as much pressure off the area as I can. Looks like I have a good size cyst (or two) developing again.
My appetite is holding steady at its latest [decreased] level. No changes in any direction as far as this is concerned.
The headache is the same as always. My T3 use is holding at about 3.5 tablets per day. With the pain in my flanks increasing, this may increase as well. I'll keep you updated.
The last two dialysis treatments have seen me bleed from the distal button hole after I am done and taped up. This is different for me. Aside from one other instance, I have not bled at all the last ten months. I have no idea why the last two treatment have been different. The nurses and tech have no idea why it's happening, either. I'll try holding for longer after I'm off the machine before being taped up. We'll see if that does the trick.
I had the monthly labs drawn this morning. The results aren't available until late Thursday night, so I will probably get those results posted on Friday.
My sleep has returned to the longer nighttime hours, and the longer nap hours. This last week, I am averaging about thirteen hours of sleep every day.
Late last week I found out just how poor my muscles have become. I had to do a task in my apt, and it took longer than I expected, and was much harder than I thought it would be. By the time I was done I was thoroughly exhausted, my muscles ached and were extremely weak. The next day I could hardly walk. I just sort of shuffled and hobbled around. Sitting down was very difficult, and getting back up was even worse. When this is all over, I have a VERY long, VERY difficult road back to even a somewhat normal strength and endurance. And getting back to my former strength and muscle mass will take years. Oh well...just gives me a good challenge!
That's all for today. Look for my lab numbers on Friday!
Good Health to All!
ScottW
I'm only a week out since my last entry and here's my next one already.
Last week my dialysis weights were as follows:
02 May 13
Starting Weight: 105.9 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.80 Kg
04 May 13
Starting Weight: 105.7 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.40 Kg
07 May 13
Starting Weight: 105.8 Kg
Ending Weight: 104.5 Kg
Water Removed: 1.30 Kg
My weight remains steady both pre and post-dialysis. My efforts to control my liquid intake is definitely paying off. Yeah, I get thirsty...a lot! But again, if I had to do this suddenly after the nephrectomy, I would not be a happy camper. I'll take the discomfort of a little thirst right now. No big deal.
Over the past week I have experienced a rapid pain increase in both flanks again. This time however, the pain is at the bottom outside of both kidneys, instead of at the top.
I am sitting like I did when I had my back injury, just trying to keep as much pressure off the area as I can. Looks like I have a good size cyst (or two) developing again.
My appetite is holding steady at its latest [decreased] level. No changes in any direction as far as this is concerned.
The headache is the same as always. My T3 use is holding at about 3.5 tablets per day. With the pain in my flanks increasing, this may increase as well. I'll keep you updated.
The last two dialysis treatments have seen me bleed from the distal button hole after I am done and taped up. This is different for me. Aside from one other instance, I have not bled at all the last ten months. I have no idea why the last two treatment have been different. The nurses and tech have no idea why it's happening, either. I'll try holding for longer after I'm off the machine before being taped up. We'll see if that does the trick.
I had the monthly labs drawn this morning. The results aren't available until late Thursday night, so I will probably get those results posted on Friday.
My sleep has returned to the longer nighttime hours, and the longer nap hours. This last week, I am averaging about thirteen hours of sleep every day.
Late last week I found out just how poor my muscles have become. I had to do a task in my apt, and it took longer than I expected, and was much harder than I thought it would be. By the time I was done I was thoroughly exhausted, my muscles ached and were extremely weak. The next day I could hardly walk. I just sort of shuffled and hobbled around. Sitting down was very difficult, and getting back up was even worse. When this is all over, I have a VERY long, VERY difficult road back to even a somewhat normal strength and endurance. And getting back to my former strength and muscle mass will take years. Oh well...just gives me a good challenge!
That's all for today. Look for my lab numbers on Friday!
Good Health to All!
ScottW
Wednesday, May 1, 2013
01 May 2013
I think eleven days is quite long enough between entries. Let's get going; starting with weights...
20 April 2013
Starting Weight: 105.2 Kg
Ending Weight: 103.9 Kg
Water Removed: 1.30 Kg
23 April 2013
Starting Weight: 105.5 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.40 Kg
25 April 2013
Starting Weight: 105.6 Kg
Ending Weight: 103.8 Kg
Water Removed: 1.80 Kg
27 April 2013
Starting Weight: 105.1 Kg
Ending Weight: 104.4 Kg
Water Removed: 0.70 Kg
30 April 2013
Starting Weight: 105.9 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.80 Kg
As you can see, my weight continues to be consistent. I won't complain about the lack of wild swings from treatment to treatment. It's a LOT easier on my body, that's for sure! And I hit my dry weight twice in a week! That's unprecedented!
I thing I solved the mystery of why the lidocane cream (for dialysis canulations) wasn't working very well. The last tube I got had an expiration date of April 2013 on it. The cream was just an old batch. Like any med, the effectiveness wears off the older it is. The current tube of cream has an expiration of 2015, and it works great! So, if you are using the cream and it doesn't seem effective, take a look at the expiration date; it simply might be old.
I'm still having increased incidences of nausea. And, like before, the intense episodes are happening in the middle of the night. I have no idea why this happens. I can only hold on until the Promethazine takes effect. :o(
The headache is like it always is--it goes...and goes...and goes...
My appetite remains lessened. This whole last month I never ate breakfast, most lunches were later in the afternoon, and dinners were fairly small. Plus, very little to no snacking. Again, I don't know why this has changed.
I got out by myself this past Monday to go take pictures. Though the excursion was only an hour and a half, it was rejuvenating and quite fun! The personal time left me exhausted and extremely sore over both flanks; but I don't regret the time one bit! It was much needed, and very fun!
I think that was all I have...I just don't remember. Remember that I am doing Twitter updates. Look for ScottW@HCB63.
Good Health to All!
ScottW
20 April 2013
Starting Weight: 105.2 Kg
Ending Weight: 103.9 Kg
Water Removed: 1.30 Kg
23 April 2013
Starting Weight: 105.5 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.40 Kg
25 April 2013
Starting Weight: 105.6 Kg
Ending Weight: 103.8 Kg
Water Removed: 1.80 Kg
27 April 2013
Starting Weight: 105.1 Kg
Ending Weight: 104.4 Kg
Water Removed: 0.70 Kg
30 April 2013
Starting Weight: 105.9 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.80 Kg
As you can see, my weight continues to be consistent. I won't complain about the lack of wild swings from treatment to treatment. It's a LOT easier on my body, that's for sure! And I hit my dry weight twice in a week! That's unprecedented!
I thing I solved the mystery of why the lidocane cream (for dialysis canulations) wasn't working very well. The last tube I got had an expiration date of April 2013 on it. The cream was just an old batch. Like any med, the effectiveness wears off the older it is. The current tube of cream has an expiration of 2015, and it works great! So, if you are using the cream and it doesn't seem effective, take a look at the expiration date; it simply might be old.
I'm still having increased incidences of nausea. And, like before, the intense episodes are happening in the middle of the night. I have no idea why this happens. I can only hold on until the Promethazine takes effect. :o(
The headache is like it always is--it goes...and goes...and goes...
My appetite remains lessened. This whole last month I never ate breakfast, most lunches were later in the afternoon, and dinners were fairly small. Plus, very little to no snacking. Again, I don't know why this has changed.
I got out by myself this past Monday to go take pictures. Though the excursion was only an hour and a half, it was rejuvenating and quite fun! The personal time left me exhausted and extremely sore over both flanks; but I don't regret the time one bit! It was much needed, and very fun!
I think that was all I have...I just don't remember. Remember that I am doing Twitter updates. Look for ScottW@HCB63.
Good Health to All!
ScottW
Friday, April 26, 2013
Reminder
It's time I put out my reminder to all of my readers that this blog illustrates my individual struggle against Polycystic Kidney Disease and End Stage Renal Failure.
How anyone does in their own treatment is NOT indicative of the things I am doing. This blog only highlights the treatments, tests, procedures and everyday struggles that I go through.
Similar patients, under similar circumstances may react differently to tests and treatments than I do. This is also very true of the individual plan that your physician deems is right for you.
Please, follow the recommendations, tests and treatments that your doctor prescribes. Only he/she can determine the best care plan for you!
I do encourage you to educate yourselves about the things you are going through. Ask plenty of questions whenever you think of them! Understand the tests, procedures, expected outcomes, etc. before you go in to any treatment, surgery, test, etc. It is within your patient rights to question, understand and educate yourself about what you are going through! So ask!!! LOTS of questions!
How anyone does in their own treatment is NOT indicative of the things I am doing. This blog only highlights the treatments, tests, procedures and everyday struggles that I go through.
Similar patients, under similar circumstances may react differently to tests and treatments than I do. This is also very true of the individual plan that your physician deems is right for you.
Please, follow the recommendations, tests and treatments that your doctor prescribes. Only he/she can determine the best care plan for you!
I do encourage you to educate yourselves about the things you are going through. Ask plenty of questions whenever you think of them! Understand the tests, procedures, expected outcomes, etc. before you go in to any treatment, surgery, test, etc. It is within your patient rights to question, understand and educate yourself about what you are going through! So ask!!! LOTS of questions!
Wednesday, April 24, 2013
Newsletter: The Transplant Experience "Let's Raise Awareness Together"
I just received the latest newsletter from The Transplant Experience, the educational division of Astellas Pharmaceuticals, maker of several transplant anti-rejection meds. This free newsletter is an outstanding tool for all transplant patients and their caretakers and families. I have found the information in the publications to be incredibly valuable.
This month's offering...
April 23, 2013
Dear Scott:
To kick off Organ Donation Awareness Month, Transplant Experience is highlighting the work we do to support organ donation with a powerful video for members to watch and share with friends. Find out what the transplant community has been up to and how you can help by spreading the word.
Get inspired at TransplantExperience.com, where you can learn from the experiences of others and discover their paths to organ donation success:
Over 100,000 people in the U.S. are waiting for the gift of an organ donation. Let's spread the word and raise awareness for Organ Donation Awareness Month. Revisit TransplantExperience.com to find out how we can help each other build a community of hope and perseverance.
You, too can sign up for this newsletter.
Just go to www.TransplantExperience.com .
It's FREE, easy, and like I stated earlier, a valuable tool to have!
This month's offering...
"Let's Raise Awareness Together"
April 23, 2013
Dear Scott:
To kick off Organ Donation Awareness Month, Transplant Experience is highlighting the work we do to support organ donation with a powerful video for members to watch and share with friends. Find out what the transplant community has been up to and how you can help by spreading the word.
Get inspired at TransplantExperience.com, where you can learn from the experiences of others and discover their paths to organ donation success:
| • | Learn about people who have given or received the gift of life through organ donation. |
| • | Access health, financial, and lifestyle tips that may help with transplant success. |
| • | Discover ways to give and receive personal support from the transplant experience. |
| • | Update your profile to receive ongoing information that's relevant to your own journey as a recipient, donor, or caregiver. |
You, too can sign up for this newsletter.
Just go to www.TransplantExperience.com .
It's FREE, easy, and like I stated earlier, a valuable tool to have!
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