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!
Friday, April 26, 2013
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!
Friday, April 19, 2013
19 April 2013
Time to get on with the latest entry.
Dialysis Weights:
09 April 13
Starting Weight: 105.2 Kg
Ending Weight: 103.6 Kg
Water Removed: 1.60 Kg
11 April 13
Starting Weight: 105.9 Kg
Ending Weight: 103.9 Kg
Water Removed: 2.00 Kg
13 April 13
Starting Weight: 106.2 Kg
Ending Weight: 104.6 Kg
Water Removed: 1.60 Kg
16 April 13
Starting Weight: 106.7 Kg
Ending Weight: 104.3 Kg
Water Removed: 2.40 Kg
18 April 13
Starting Weight: 105.6 Kg
Ending Weight: 103.9 Kg
Water Removed: 1.70 Kg
So, it really does appear--at least for now--that the wide weight fluctuations have stopped. Between my efforts to reduce my fluid intake and my decreased appetite, this is why we're seeing a stabilization. Or, it's because my body is just giving me a break. In either case...I'll take whatever I can get! :o)
Also doing better, the flank pain. I certainly don't mind this reduction one bit! More than likely it's because some cysts popped on my kidneys. So, until others grow large, the respite from the severe pain is most welcomed!
The headache, on the other hand, is going as strong as ever. A part of the headache is the poor sleep I've been getting lately. My dialysis naps are restless, my nighttime sleep is restless and I wake up too early and can't get back to sleep which leaves me dragging all day and taking multiple naps wherever I happen to be. In all, I am getting about 11 hours of sleep per day; but feel as if I've had half that much.
Adding to feeling exhausted are the multiple body aches I'm having every day, all day.
I know that a large part of this is due to the cramping I get after dialysis. My legs are constantly sore because of this. Even with drinking Smart Water, the cramping still happens; just not as severely as they would without it. And because of the body aches I know that I am not holding my body very well and am likely compensating with muscles I shouldn't be using so much. But, I do what I must to get through every day. Like any other thing like this, once I realize what I'm doing I consciously correct my posture and relieve some of the strain.
Back on the dialysis front, over the last few treatments (Tx's) I have noticed that the lidocane cream has not been very effective. When I was stuck yesterday it felt like I hadn't applied the cream at all. Right now I apply it one hour prior to canulation. I am thinking of upping that to and hour and fifteen minutes. I'll let you know what I do next.
One of my personal projects I work on every day is nearing completion--or, at least this stage of it. I have, over the past twenty four months, been scanning all of my lifetime of photography onto an external hard drive. 3600+ slides (my preferred medium), plus a thousand or so photographs. Then, I had to go through those slides and decide the ones I want to use for possible business purposes. That ended up at 700+ photos. Then, I had to go through those 700+ slides, clean them up (dust, lint, processing marks, etc), and then restore them to their natural colors, contrasts, etc. How could I possibly know this? Because I can remember where I took each photo, the lighting, the colors and anything unique about the day it was taken. Once I reach the right color it is just sort of an Aha! moment and I know that I'm done on that photo. It's been a long, exhaustive process. I should be finished up with it in about a month, or so. It feels good to accomplish this daunting task; but I am grateful for having the time to do it. Otherwise, this could have taken years to finish.
And that is all of my news today...at least all that I can remember. Remember, I am doing Twitter updates. You can find me at: ScottW @HCB63. Leave me a comment on Twitter, or here, if you'd like.
Have an Awesome week, my friends!
Good Health to All!
ScottW
Dialysis Weights:
09 April 13
Starting Weight: 105.2 Kg
Ending Weight: 103.6 Kg
Water Removed: 1.60 Kg
11 April 13
Starting Weight: 105.9 Kg
Ending Weight: 103.9 Kg
Water Removed: 2.00 Kg
13 April 13
Starting Weight: 106.2 Kg
Ending Weight: 104.6 Kg
Water Removed: 1.60 Kg
16 April 13
Starting Weight: 106.7 Kg
Ending Weight: 104.3 Kg
Water Removed: 2.40 Kg
18 April 13
Starting Weight: 105.6 Kg
Ending Weight: 103.9 Kg
Water Removed: 1.70 Kg
So, it really does appear--at least for now--that the wide weight fluctuations have stopped. Between my efforts to reduce my fluid intake and my decreased appetite, this is why we're seeing a stabilization. Or, it's because my body is just giving me a break. In either case...I'll take whatever I can get! :o)
Also doing better, the flank pain. I certainly don't mind this reduction one bit! More than likely it's because some cysts popped on my kidneys. So, until others grow large, the respite from the severe pain is most welcomed!
The headache, on the other hand, is going as strong as ever. A part of the headache is the poor sleep I've been getting lately. My dialysis naps are restless, my nighttime sleep is restless and I wake up too early and can't get back to sleep which leaves me dragging all day and taking multiple naps wherever I happen to be. In all, I am getting about 11 hours of sleep per day; but feel as if I've had half that much.
Adding to feeling exhausted are the multiple body aches I'm having every day, all day.
I know that a large part of this is due to the cramping I get after dialysis. My legs are constantly sore because of this. Even with drinking Smart Water, the cramping still happens; just not as severely as they would without it. And because of the body aches I know that I am not holding my body very well and am likely compensating with muscles I shouldn't be using so much. But, I do what I must to get through every day. Like any other thing like this, once I realize what I'm doing I consciously correct my posture and relieve some of the strain.
Back on the dialysis front, over the last few treatments (Tx's) I have noticed that the lidocane cream has not been very effective. When I was stuck yesterday it felt like I hadn't applied the cream at all. Right now I apply it one hour prior to canulation. I am thinking of upping that to and hour and fifteen minutes. I'll let you know what I do next.
One of my personal projects I work on every day is nearing completion--or, at least this stage of it. I have, over the past twenty four months, been scanning all of my lifetime of photography onto an external hard drive. 3600+ slides (my preferred medium), plus a thousand or so photographs. Then, I had to go through those slides and decide the ones I want to use for possible business purposes. That ended up at 700+ photos. Then, I had to go through those 700+ slides, clean them up (dust, lint, processing marks, etc), and then restore them to their natural colors, contrasts, etc. How could I possibly know this? Because I can remember where I took each photo, the lighting, the colors and anything unique about the day it was taken. Once I reach the right color it is just sort of an Aha! moment and I know that I'm done on that photo. It's been a long, exhaustive process. I should be finished up with it in about a month, or so. It feels good to accomplish this daunting task; but I am grateful for having the time to do it. Otherwise, this could have taken years to finish.
And that is all of my news today...at least all that I can remember. Remember, I am doing Twitter updates. You can find me at: ScottW @HCB63. Leave me a comment on Twitter, or here, if you'd like.
Have an Awesome week, my friends!
Good Health to All!
ScottW
(My latest self-pic. Taken a couple of days ago.)
Monday, April 8, 2013
08 April 2013
I'm still having a rough time of it, but I need to get caught up now before I get way behind. So, let's start with the monthly lab results:
*Albumin (02 Apr): 4.70 g/dL (+0.20 from 19 Feb)
*Hemoglobin (02 Apr): 10.6 g/dL (-0.50 g/dL from 05 Mar)
*Ca Corrected (02 Apr): 9.30 mg/dL (No Change from 05 Mar)
*Phosphorous (02 Apr): 5.10 mg/dL (+ 0.3 mg/dL from 05 Mar)
*PTH Intact (19 Mar): 139 pg/mL (+42 pg/mL from 08 Jan)
*K+ (19 Mar): 3.60 mEq/L (-0.40 mEq/L from 19 Feb)
*spKdt/V Dialysis (02 Apr): 1.52 (+0.06 from 05 Mar)
Well, looks like mixed news on this month's labs. The Albumin, Ca Corrected and spKdt are eith up or holding steady; while the Hemoglobin is down--again--the potassium is just over the lower end of the acceptable range, and, even though the phos is still good, it increased again.
As far as my weights, here are the latest results:
02 April 13
Starting Weight: 106.5 Kg
Ending Weight: 104.2 Kg
Water Removed: 2.30 Kg
04 April 13
Starting Weight: 107.2 Kg
Ending Weight: 104.2 Kg
Water Removed: 3.00 Kg
06 April 13
Starting Weight: 106.5 Kg
Ending Weight: 103.8 Kg
Water Removed: 2.70 Kg
It appears that the extra water my body was giving back has stopped...or, at least given me a break. I don't know what to make of this though. From my perspective, I should be having better off-days. However, I am nauseated more, my flank pain is up significantly, my appetite is down again and I am sleeping longer post-dialysis than ever (last week I averaged 6.5 hours per nap). Time for more observations to determine if any new patterns are emerging.
Speaking of nausea, I am getting sick in the middle of the night, every night for the last week, or so. I have to take the Promethazine, though still only a fraction of the regular dose. At dialysis I asked for Zofran (anti-emetic) every treatment last week.
Plus, yesterday I started to feel lousy. Not because of nausea; but because I've been feeling like I did pre-dialysis when I was blah, and had a constant ache in my stomach that just made me feel like poo. That's the only way I can describe it right now.
The headache has also increased. This may be due to my feeling worse and subsequently holding myself more rigid than normal, or tightening my jaw; or, it could be the unremittent headache just making a fuss of things.
The flank pain is affecting my ability to walk properly. Every move I make only exacerbates the pain, so my body is trying to compensate by limping and struggling no matter how far or short a distance I tread. It is not fun, by any stretch. I can just picture the cysts on both kidneys growing, and growing, and...well, you get it.
In spite of the increased obstacles, I am still doing housework; still helping run errands--as I can--still working on my personal projects; still endeavoring every day to keep a good attitude and outlook, and working towards my healthy future. As I've stated many times already, keeping your mind in a good place is absolutely vital to coming out of this with the brightest possible result.
I refuse to let my thoughts turn negative, and to negatively affect my whole day. Negative thoughts just tears me down, dragging my heart and will right down with it. I can't--won't--let that happen. Everyone facing similar hardship has the strength within them to rise above the detritus of negativity and smile, laugh and enjoy life as much as they can. They just have to realize that they can do it; that nothing is beyond their power to overcome and be the healthiest, happiest that they can possibly be, even under these circumstances. Believe it! I wouldn't be telling you this if it wasn't true!
And with that, I will wrap this up.
Remember, I am going to have a try with twitter updates. If I get enough followers, I may keep going with it. Anyone can follow me by going to "@HCB63" (look for ScottW).
Until next time...
Good Health to All!
ScottW
*Albumin (02 Apr): 4.70 g/dL (+0.20 from 19 Feb)
*Hemoglobin (02 Apr): 10.6 g/dL (-0.50 g/dL from 05 Mar)
*Ca Corrected (02 Apr): 9.30 mg/dL (No Change from 05 Mar)
*Phosphorous (02 Apr): 5.10 mg/dL (+ 0.3 mg/dL from 05 Mar)
*PTH Intact (19 Mar): 139 pg/mL (+42 pg/mL from 08 Jan)
*K+ (19 Mar): 3.60 mEq/L (-0.40 mEq/L from 19 Feb)
*spKdt/V Dialysis (02 Apr): 1.52 (+0.06 from 05 Mar)
Well, looks like mixed news on this month's labs. The Albumin, Ca Corrected and spKdt are eith up or holding steady; while the Hemoglobin is down--again--the potassium is just over the lower end of the acceptable range, and, even though the phos is still good, it increased again.
As far as my weights, here are the latest results:
02 April 13
Starting Weight: 106.5 Kg
Ending Weight: 104.2 Kg
Water Removed: 2.30 Kg
04 April 13
Starting Weight: 107.2 Kg
Ending Weight: 104.2 Kg
Water Removed: 3.00 Kg
06 April 13
Starting Weight: 106.5 Kg
Ending Weight: 103.8 Kg
Water Removed: 2.70 Kg
It appears that the extra water my body was giving back has stopped...or, at least given me a break. I don't know what to make of this though. From my perspective, I should be having better off-days. However, I am nauseated more, my flank pain is up significantly, my appetite is down again and I am sleeping longer post-dialysis than ever (last week I averaged 6.5 hours per nap). Time for more observations to determine if any new patterns are emerging.
Speaking of nausea, I am getting sick in the middle of the night, every night for the last week, or so. I have to take the Promethazine, though still only a fraction of the regular dose. At dialysis I asked for Zofran (anti-emetic) every treatment last week.
Plus, yesterday I started to feel lousy. Not because of nausea; but because I've been feeling like I did pre-dialysis when I was blah, and had a constant ache in my stomach that just made me feel like poo. That's the only way I can describe it right now.
The headache has also increased. This may be due to my feeling worse and subsequently holding myself more rigid than normal, or tightening my jaw; or, it could be the unremittent headache just making a fuss of things.
The flank pain is affecting my ability to walk properly. Every move I make only exacerbates the pain, so my body is trying to compensate by limping and struggling no matter how far or short a distance I tread. It is not fun, by any stretch. I can just picture the cysts on both kidneys growing, and growing, and...well, you get it.
In spite of the increased obstacles, I am still doing housework; still helping run errands--as I can--still working on my personal projects; still endeavoring every day to keep a good attitude and outlook, and working towards my healthy future. As I've stated many times already, keeping your mind in a good place is absolutely vital to coming out of this with the brightest possible result.
I refuse to let my thoughts turn negative, and to negatively affect my whole day. Negative thoughts just tears me down, dragging my heart and will right down with it. I can't--won't--let that happen. Everyone facing similar hardship has the strength within them to rise above the detritus of negativity and smile, laugh and enjoy life as much as they can. They just have to realize that they can do it; that nothing is beyond their power to overcome and be the healthiest, happiest that they can possibly be, even under these circumstances. Believe it! I wouldn't be telling you this if it wasn't true!
And with that, I will wrap this up.
Remember, I am going to have a try with twitter updates. If I get enough followers, I may keep going with it. Anyone can follow me by going to "@HCB63" (look for ScottW).
Until next time...
Good Health to All!
ScottW
Sunday, April 7, 2013
06 April 2013
Just a brief note this evening...
I had planned on writing my next blog tonight, but I not only feel completely wiped out by today's dialysis, but my flank pain is ridiculous and I cannot get comfortable laying, standing, sitting, etc. To say I am miserable tonight would be a fair assertion.
With all of this, I just don't have it in me to type up a regular blog entry. Maybe tomorrow; but no promises one way or the other.
Have an enjoyable Sunday, everyone!
Good Health to All!
ScottW
Update! 07 April 2013:
I'm going to try my hand at Twitter for anything related to my kidney disease such as treatments, procedures, daily updates, etc. If you are interested, you can follow me at:
@HCB63 (under ScottW).
We'll see how it goes for a while.
As far as today, my body is not so weary this afternoon, but the bilateral flank pain is terrible. No good, there! SW
I had planned on writing my next blog tonight, but I not only feel completely wiped out by today's dialysis, but my flank pain is ridiculous and I cannot get comfortable laying, standing, sitting, etc. To say I am miserable tonight would be a fair assertion.
With all of this, I just don't have it in me to type up a regular blog entry. Maybe tomorrow; but no promises one way or the other.
Have an enjoyable Sunday, everyone!
Good Health to All!
ScottW
Update! 07 April 2013:
I'm going to try my hand at Twitter for anything related to my kidney disease such as treatments, procedures, daily updates, etc. If you are interested, you can follow me at:
@HCB63 (under ScottW).
We'll see how it goes for a while.
As far as today, my body is not so weary this afternoon, but the bilateral flank pain is terrible. No good, there! SW
Monday, April 1, 2013
01 April 2013
No April Fools jokes...I really am here to write a blog entry.
Sorry about two weeks passing. I have not been feeling the best lately, and typing up an entry just seemed like a lengthy, arduous chore; and I just haven't had the mental energy to overcome that.
So, let's get going with the weights:
16 March 13
Starting Weight: 106.0 Kg
Ending Weight: 103.5 Kg
Water Removed: 2.50 Kg
19 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.2 Kg
Water Removed: 3.50 Kg
21 March 13
Starting Weight: 106.6 Kg
Ending Weight: 103.1 Kg
Water Removed: 3.50 Kg
23 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.3 Kg
Water Removed: 3.40 Kg
26 March 13
Starting Weight: 105.8 Kg
Ending Weight: 103.3 Kg
Water Removed: 2.50 Kg
28 March 13
Starting Weight: 106.3 Kg
Ending Weight: 102.8 Kg
Water Removed: 3.50 Kg
30 March 13
Starting Weight: 106.0 Kg
Ending Weight: 104.4 Kg
Water Removed: 1.60 Kg
As you can see, the wild weight swings have partially eased off. My top weight has become steady; though my body is still dropping an extra kilogram most of the time. The 104.4 kg end weight on my last Tx was the first time all March that I either did not give too much back, or that I even got close to my dry weight. I am just happy I am not ballooning up top 107-108 kg's. That was so hard on my body! Too many cramps go along with that when combined with a 4+ kg loss during Tx.
Also, remember my March labs and the two consecutive jumps in phosphorous? Well, the dietitian was greatly concerned about the huge leaps and ordered additional testing and we actually saw another jump (from 5.8 up to 6.6--which is way over the top of the range). A week later, on yet another draw, my phosphorous dropped all the way down to 4.8. She--the dietitian--consulted with my nephrologist who stated that the jump in the phosphorous numbers was most likely the result of further loss of renal function, then my body trying to compensate (hence the jump then drop in the number). Since we no longer test for the GFR (Glomelular Filtration Rate, or total kidney function), then we don't know the impact on my kidneys.
On my end of things, I continue to urinate at a decent volume, and more often than not, my urine is fairly clear and free of particulates or proteins. Yes, I still have instances of decreased volume, foamy urine and moderately yellowed in color, the truth is that right now, aside from decreasing frequency of urination, my kidneys seem to be doing a fairly decent job. I still have LOTS of bilateral flank pain--this has never gone away or even decreased--and I feel like garbage most of the time; but at least I haven't felt any major downward turn in my day to day health. And frankly, I don't know if this is a good thing, or bad. In either case, I'll certainly take a bit of a reprieve.
My overall appetite has decreased by around 25%. I no longer eat breakfast at all; not even a bowl of cereal. My lunches aren't happening until two or three in the afternoon, and my dinners are less than they were a month ago. Plus, I'm not snacking hardly at all.
And my liquid intake has decreased as well; though this one is voluntary. As I get closer to renal removal, I am continuing my efforts to get used to decreasing volumes of liquids. It still isn't fun; but again, I don't want to have to make the adjustment after I have no kidneys. Getting used to being thirsty is not an easy thing to do. However, for myself, this is the best way to approach this impending reality.
With the huge swings in my weight (pre and post-dialysis), I have been feeling lousy. I have been awoken from my dialysis nap with nasty, painful cramping in both feel and lower legs. Unfortunately, standing is the best way to alleviate the cramping; followed by drinking water (or in my case, Smart Water by Glaceau). Also, the extra fluid losses are causing extreme exhaustion and ultimately, ruins my off days with more exhaustion, sore legs and just feeling lousy.
And on top of all that, my nausea has increased over the last few weeks. I am taking Promethazine (the anti-emetic) more frequently. The nausea is hitting at all times of the day. It particularly likes getting me in the middle of the night. Nothing like waking from a sound sleep feeling as if you'll throw up any second, and having to just deal with that for 45+ minutes until the Promethazine kicks in. Then, you get to sleep in a long time and feel ridiculously groggy for hours after you awaken. Not exactly my idea of fun...but at least I can kill the nausea for a while; which is always a great thing!
My dreams have been good lately. No nightmares, and I have been controlling things in my subconscious with little effort on my [conscious] part. It is a really nice break from the terrible dreams that can very easily bring down my defenses and bring hopelessness and despair to my heart. I still never remember my dreams--which is nothing new--I just know when I've had dreams in which my conscious mind had to alter events or emotions in my subconscious. Conversely, I know when my dreams have been good in general, and I have not had to change anything. This part of my fight I am always grateful for. How you sleep and dream so greatly influences your conscious mind that I undoubtedly would not be as strong if I was having a struggle subconsciously. You've read about how instances of bad dreams have negatively affected me; so, you also know that when I say my dreams have been good, I am doing exceptionally mentally, from day to day.
That's never to say I don't get tired of all this. Anyone would. I have my days when I just want a break. Never getting discouraged, mind you...just wanting a break for even a few hours. But, I always fight through this and keep my mind in a good place. You practice this long enough and I can promise you that is becomes habit and fairly easy from day to day.
However, giving me additional strength every day--sometimes every minute--are the thoughts, prayers and general support I get from my family and my many friends around the world. Thank you all for every effort you make for me. I literally could not do this without you! My friends and loved ones are my pillars, and I stand strong because of you.
And with that, I shall say so long, for now. I will try to avoid another two week lapse in my blog entries...no promises, though. ;o)
Good Health to All!
ScottW
Sorry about two weeks passing. I have not been feeling the best lately, and typing up an entry just seemed like a lengthy, arduous chore; and I just haven't had the mental energy to overcome that.
So, let's get going with the weights:
16 March 13
Starting Weight: 106.0 Kg
Ending Weight: 103.5 Kg
Water Removed: 2.50 Kg
19 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.2 Kg
Water Removed: 3.50 Kg
21 March 13
Starting Weight: 106.6 Kg
Ending Weight: 103.1 Kg
Water Removed: 3.50 Kg
23 March 13
Starting Weight: 106.7 Kg
Ending Weight: 103.3 Kg
Water Removed: 3.40 Kg
26 March 13
Starting Weight: 105.8 Kg
Ending Weight: 103.3 Kg
Water Removed: 2.50 Kg
28 March 13
Starting Weight: 106.3 Kg
Ending Weight: 102.8 Kg
Water Removed: 3.50 Kg
30 March 13
Starting Weight: 106.0 Kg
Ending Weight: 104.4 Kg
Water Removed: 1.60 Kg
As you can see, the wild weight swings have partially eased off. My top weight has become steady; though my body is still dropping an extra kilogram most of the time. The 104.4 kg end weight on my last Tx was the first time all March that I either did not give too much back, or that I even got close to my dry weight. I am just happy I am not ballooning up top 107-108 kg's. That was so hard on my body! Too many cramps go along with that when combined with a 4+ kg loss during Tx.
Also, remember my March labs and the two consecutive jumps in phosphorous? Well, the dietitian was greatly concerned about the huge leaps and ordered additional testing and we actually saw another jump (from 5.8 up to 6.6--which is way over the top of the range). A week later, on yet another draw, my phosphorous dropped all the way down to 4.8. She--the dietitian--consulted with my nephrologist who stated that the jump in the phosphorous numbers was most likely the result of further loss of renal function, then my body trying to compensate (hence the jump then drop in the number). Since we no longer test for the GFR (Glomelular Filtration Rate, or total kidney function), then we don't know the impact on my kidneys.
On my end of things, I continue to urinate at a decent volume, and more often than not, my urine is fairly clear and free of particulates or proteins. Yes, I still have instances of decreased volume, foamy urine and moderately yellowed in color, the truth is that right now, aside from decreasing frequency of urination, my kidneys seem to be doing a fairly decent job. I still have LOTS of bilateral flank pain--this has never gone away or even decreased--and I feel like garbage most of the time; but at least I haven't felt any major downward turn in my day to day health. And frankly, I don't know if this is a good thing, or bad. In either case, I'll certainly take a bit of a reprieve.
My overall appetite has decreased by around 25%. I no longer eat breakfast at all; not even a bowl of cereal. My lunches aren't happening until two or three in the afternoon, and my dinners are less than they were a month ago. Plus, I'm not snacking hardly at all.
And my liquid intake has decreased as well; though this one is voluntary. As I get closer to renal removal, I am continuing my efforts to get used to decreasing volumes of liquids. It still isn't fun; but again, I don't want to have to make the adjustment after I have no kidneys. Getting used to being thirsty is not an easy thing to do. However, for myself, this is the best way to approach this impending reality.
With the huge swings in my weight (pre and post-dialysis), I have been feeling lousy. I have been awoken from my dialysis nap with nasty, painful cramping in both feel and lower legs. Unfortunately, standing is the best way to alleviate the cramping; followed by drinking water (or in my case, Smart Water by Glaceau). Also, the extra fluid losses are causing extreme exhaustion and ultimately, ruins my off days with more exhaustion, sore legs and just feeling lousy.
And on top of all that, my nausea has increased over the last few weeks. I am taking Promethazine (the anti-emetic) more frequently. The nausea is hitting at all times of the day. It particularly likes getting me in the middle of the night. Nothing like waking from a sound sleep feeling as if you'll throw up any second, and having to just deal with that for 45+ minutes until the Promethazine kicks in. Then, you get to sleep in a long time and feel ridiculously groggy for hours after you awaken. Not exactly my idea of fun...but at least I can kill the nausea for a while; which is always a great thing!
My dreams have been good lately. No nightmares, and I have been controlling things in my subconscious with little effort on my [conscious] part. It is a really nice break from the terrible dreams that can very easily bring down my defenses and bring hopelessness and despair to my heart. I still never remember my dreams--which is nothing new--I just know when I've had dreams in which my conscious mind had to alter events or emotions in my subconscious. Conversely, I know when my dreams have been good in general, and I have not had to change anything. This part of my fight I am always grateful for. How you sleep and dream so greatly influences your conscious mind that I undoubtedly would not be as strong if I was having a struggle subconsciously. You've read about how instances of bad dreams have negatively affected me; so, you also know that when I say my dreams have been good, I am doing exceptionally mentally, from day to day.
That's never to say I don't get tired of all this. Anyone would. I have my days when I just want a break. Never getting discouraged, mind you...just wanting a break for even a few hours. But, I always fight through this and keep my mind in a good place. You practice this long enough and I can promise you that is becomes habit and fairly easy from day to day.
However, giving me additional strength every day--sometimes every minute--are the thoughts, prayers and general support I get from my family and my many friends around the world. Thank you all for every effort you make for me. I literally could not do this without you! My friends and loved ones are my pillars, and I stand strong because of you.
And with that, I shall say so long, for now. I will try to avoid another two week lapse in my blog entries...no promises, though. ;o)
Good Health to All!
ScottW
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