It has been eleven days since my last regular entry?!
I don't even know where--or how--to start.
Let's begin by reiterating the news I gave in my photo entry about the edema in my legs. I will not be starting any dialysis until July because in order to help me cover most of the costs of the traeatment and the meds, I had to convert my Medicare coverage to a Medicare Advantage Plan that covers Medicare Parts A (Hospitalization), B (Clinics and Preventative) and D (Prescriptions). The premium is no additional cost than what I am now paying for the basic Medicare. Plus, it caps my per year co-pays instead of constant accumulation as with the regular coverage.
Unfortunately, the conversion cannot begin until 01 July of this year. So, unless my kidneys fail altogether and my body crashes, again, dialysis will not begin until July. IF I go into renal failure then I will do what I have to.
Now, let's get on with the time since my last entry on the fifth...
First and foremost...Exhaustion. I thought I knew exhaustion up to this point. I actually had no idea how much greater that exhaustion would be come. It's as if my body--after this latest drop--is suddenly screaming, "Enough! I am so tired of this! "
Yes, I did struggle mentally for a day or so after the news of the latest drop; but I snapped out of it as I always do. However, my body didn't. I felt weighed down more and more every day. My flank pain has increased on both sides, my headache took a [seemingly] permanent leap up in intensity, my energy each day is gone in a mere fraction of what it had taken previously, I am sleepier around 50% more, my naps have increased in number and duration each day, and most of the time I am now feeling as if I am in a fog both mentally and physically.
I am moving very slowly, thinking slower, laughing less, have more general dizziness, have a seemingly permanent edemic increase in my legs, and have been awaking every morning feeling like I got no sleep at all. I do NOT like feeling like this...at all!
In spite of the exhaustion, I am still getting my housework done (very slowly), I am getting out to help with errands as I feel up to it (sometimes going because I need to get out of the house), and just today I finished with a personal project that I have spent the last sixteen months working on. That last one feels really, really great!
I am sure that a part of my exhaustion is mental; though certainly not on a conscious level. I continue to work every day to keep my mind in a good place. However, I am certain that my body, now under incredible stresses, is affecting my subconscious in ways that I cannot even begin to pretend I understand. In that conscious/subconscious battle, I am sure that my mind and my body are losing ground to the renal failure accelerating inside of me.
But, the fight goes on. Dialysis is coming up, and hopefully, I will start feeling better after a few treatments. We will see soon enough...
A little earlier I stated that my headache has intensified and the bilateral flank pain has increased. Accordingly, my T3 usage has also gone up. I have previously stated that both areas were hurting more and my T3 dosing had gone from about 3.75/day to about 4.9/day. Over the last week, that has inceased again to about 6 T3's per day. Whereas before I was taking the med for either my head or my flanks, I am often dosing now for both at the same time. I will usually take one, then another about an hour later. I rarely take two at the same time; and never take more than the prescribed amount in the stated time frame between doses. I am very careful about that.
I also want to mention that I saw something new when looking in the mirror. The area on my upper nose (the bridge) next to my eyes looks as if both sides [on either sides] is bruised. That is the only way I can think to describe this darkening of the tissue. I have never before seen this on me, and yes, it is highly unusual [for me].
As for everything else...
-My urine has darkened around 10%, and has become more odoriferous;
-The blurriness in my eyes has increased a bit;
-The muscles of my lower arms have begun aching. Not cramping, or anything like that. Just aching.
-My appetite is up and down, and I can barely taste any of the foods I am eating.
-My dreams are still controllable (thank goodness).
-and the vertigo remains down from what it has been. However, I have noticed some balancing issues both with my cane and without it. Nothing major; just little instances of catching my balance that I had not been doing for some time.
That is all I can think of for now. I hope that I adequately explained about starting dialysis later--
Wait!
I remember something else...
In my entry about the edema I stated that I had decided to start dialysis in-center rather than train immediately for the at home treatments that...
..Nope...Lost my train of thought. I can't think of how to put this rather lengthy explanation succinctly; so, I will save that for another time.
Good Health to All!
ScottW
Saturday, June 16, 2012
Thursday, June 14, 2012
The Edema Effect
Well, I finally got a few comparison shots of the edema that is occurring in my legs every day. Granted, the edema has worsened over the past couple of weeks, and the "normal" views aren't so normal anymore. However, you will see the difference.
The "Good"
A side view, again, this morning, 13 June 2012
The "Ugly"
A Top View This Evening, 13 June 2012
Another Top View from This Evening
The "Good"
My Feet This Morning, 13 June 2012
When they are at reduced edema.
The "Ugly"
See the difference?
Another Side View from This Evening
13 June 2012
13 June 2013
There you have it. Like I stated earlier, my feet are no longer losing most of the fluid accumulation as I sleep anymore. The top two photos show obvious edema.
However, the biggest difference is how my feet look by the evening. The toes are edemic, the feet are grossly distended, and my ankles are unrecognizable. This same cycle is now happening daily, and will likely continue to get worse until I begin dialysis.
Speaking of dialysis, I stated that I had to work out some financials before I could begin the treatments. Well, I ended up having to convert my Medicare Parts A & B to a Medicare Advantage Plan that also covers Medicare Part D for prescriptions. The monthly cost to me is $0 more than what I am already paying per month for the regular Medicare. Plus, it caps my financial co-pay per year to a relatively small sum.
Unfortunately, my Advantage coverage does not begin until 01 July. That means that I cannot begin covered dialysis until the start of July.
IF my kidneys fail altogether before then, I will do what I must. Otherwise, no dialysis until July.
Also, I have decided to start out with in-center treatments three times per week. I will see how effective the dialysis is, how much energy I have, etc. If I feel that I am not improving much, or any, I will look at doing home-hemo in about a month after the start of dialysis.
I know that I didn't explain that very well, and I do apologize. I will try to better elucidate the reasoning in my next regular blog entry.
Good Health to All!
ScottW
Monday, June 11, 2012
A Reader's Comment
Today I received a personal comment from one of my readers. I will not share the entire note as that would be a violation of privacy.
This reader, Irene, was very recently diagnosed with Type II diabetes following the removal of a gangrenous toe. Irene previously had no knowledge of the diabetes. She strongly felt that she had to share the following with me:
"...Life has many twist and turns whether its good or bad, and we have to learn to accept whatever fate that falls on us. I have learnt a lot through reading your blog and came to understand the strength you have....this also made me stronger to accept what happened to me."
I have stated many times that I am no hero, and often doubt my own strength, and wonder if my blog really makes a difference to anyone.
I really appreciate hearing this from one of my readers. This single comment makes my efforts with this blog entirely worthwhile. To know that I so positively impacted someone touches me deeply. Truly, I am humbled by this comment and wish Irene the very best as she adjusts to a life impacted so strongly and permanently by diabetes.
Good Health to You All!
ScottW
This reader, Irene, was very recently diagnosed with Type II diabetes following the removal of a gangrenous toe. Irene previously had no knowledge of the diabetes. She strongly felt that she had to share the following with me:
"...Life has many twist and turns whether its good or bad, and we have to learn to accept whatever fate that falls on us. I have learnt a lot through reading your blog and came to understand the strength you have....this also made me stronger to accept what happened to me."
I have stated many times that I am no hero, and often doubt my own strength, and wonder if my blog really makes a difference to anyone.
I really appreciate hearing this from one of my readers. This single comment makes my efforts with this blog entirely worthwhile. To know that I so positively impacted someone touches me deeply. Truly, I am humbled by this comment and wish Irene the very best as she adjusts to a life impacted so strongly and permanently by diabetes.
Good Health to You All!
ScottW
Friday, June 8, 2012
Reminder
It is time to once again remind my readers that this blog relates my singular, unique experience in this struggle with polycystic kidney disease.
The way my body reacts to treatments, medications, disease advancement, etc is strictly my experience. Anyone else could have a completely different outcome or overall experience in regards to this disease.
If you find yourself facing this, or any other disease, please consult your physician and follow his/her medical advice. They are not only treating the disease, but you as well.
Thank you for continuing to follow me on this journey.
Sincerely,
ScottW
The way my body reacts to treatments, medications, disease advancement, etc is strictly my experience. Anyone else could have a completely different outcome or overall experience in regards to this disease.
If you find yourself facing this, or any other disease, please consult your physician and follow his/her medical advice. They are not only treating the disease, but you as well.
Thank you for continuing to follow me on this journey.
Sincerely,
ScottW
Tuesday, June 5, 2012
05 June 2012
I know that I promised this update yesterday afternoon, so please accept my apologies if you have been trying to read the latest news. You will understand why in a moment.
Out of all of my labs that were done on Friday, there are only two numbers I am going to concentrate on today.
2.7
14.90
In the last two months I have declined a significant 2.70% function, and am now sitting at 14.90% total renal function.
Not only did I drop to dialysis level, I dropped to transplant level, as well...in one fell swoop! Suddenly the game changes.
I will tell you that I was quite taken aback by the sudden development. I was not expecting this today. I was actually expecting a mild drop...if any drop at all. So, I was unprepared when, after greeting me, the doctor asked, "Do you think you are feeling bad enough to start dialysis?" 'What?' (Seriously...I asked that!)
My nephrologist strongly recommended I start dialysis this coming Thursday because of the numbers, and because of how I have been feeling the last month plus. Unfortunately, I cannot start that yet because I need to wrangle some financials that will help me cover the 20% that Medicare does not. Plus, I need to apply for the Medicare Drug plan because the meds associated with dialysis can start at $600+/month. So, a little phone calling and insurance tag to play before I can actually start.
In the mean time, I had more blood drawn today for a HepC (Hepatitis C) Panel that is required before dialysis. Plus, I got a chest xray* done so the docs can look for any chest congestion which might compromise me to start the treatment.
So, that's the BIG news!
I came home today and was asleep within minutes, and stayed that way for over four hours. On waking I felt as if I were in a bit of a fog as my brain has been trying to process this sudden change in everything. I am better now, and at least able to write the news.
Let's go over the remainder of the labs now. I will write comparison numbers from April's labs as well so you can see the changes that have happened in two months. (*Red numbers are abnormal readings. **NR=Normal Range)
Glomelular Filtration Rate (GFR) 14.90% April 2012: 17.6%
Blood Urea Nitrogen (BUN) 43.0 (NR 5-26) April 2012: 40
Serum Creatinine 4.50 (NR 0.5-1.5) April 2012: 3.90
Glucose 103 (NR 65-109) April 2012: 101
Phosphorous 4.1 (NR 2.5-4.5) April 2012: 3.5
*I will have to start watching phosphorous while on dialysis.
Sodium (NA+) and Potassium (K+) both within NR and nearly identical to April.
White Blood Cells (WBC) 4.20 (NR 4.50-11.0) April 2012: 5.06
Red Blood Cells (RBC) 4.03 (NR 4.7-6.1) April 2012: 4.19
Monocytes%, Lymphocytes#, Eosinophils% and Basophils% all abnormal by moderate to severe rates.
Hematacrit (HCT) 33.4 (NR 42-52) April 2012: 33.6
Hemoglobin (HGB) 11.6 (NR 14-18) April 2012: 11.9
Parathyroid Hormone (PTH) 75.3 pg/ml (NR 12-88) April 2012: 90.4
Lipids all look good.
Vitamin D (Vit D, 25-OH) 38.3 (NR 32-100)
Weight 235 April 2012: 243 (-8 lbs)
That's all of the relevant numbers. When I start dialysis I will have more numbers to watch, more meds to take, and various related things to look for that I currently know absolutely nothing about.
So, it is on to the next phase. I will keep you up to date on everything that happens, all the decisions to be made, all the tests to be run, etc.
Let's continue on this journey together.
Good Health to All!
ScottW
*On the chest xray I learned something unexpected about myself. I had to actually get two xrays done (different views) because my lungs are too wide (side to side) to fit onto a single xray pic. This means I have larger capacity lungs than the normal adult male.
I asked if this might be due to the fact I have exercised nearly my entire life, and was told, "Aside from any genetic propensities, a lifetime of exercising will absolutely cause you to have larger lungs." I never knew that about myself. Kinda Cool! :o)
Out of all of my labs that were done on Friday, there are only two numbers I am going to concentrate on today.
2.7
14.90
In the last two months I have declined a significant 2.70% function, and am now sitting at 14.90% total renal function.
Not only did I drop to dialysis level, I dropped to transplant level, as well...in one fell swoop! Suddenly the game changes.
I will tell you that I was quite taken aback by the sudden development. I was not expecting this today. I was actually expecting a mild drop...if any drop at all. So, I was unprepared when, after greeting me, the doctor asked, "Do you think you are feeling bad enough to start dialysis?" 'What?' (Seriously...I asked that!)
My nephrologist strongly recommended I start dialysis this coming Thursday because of the numbers, and because of how I have been feeling the last month plus. Unfortunately, I cannot start that yet because I need to wrangle some financials that will help me cover the 20% that Medicare does not. Plus, I need to apply for the Medicare Drug plan because the meds associated with dialysis can start at $600+/month. So, a little phone calling and insurance tag to play before I can actually start.
In the mean time, I had more blood drawn today for a HepC (Hepatitis C) Panel that is required before dialysis. Plus, I got a chest xray* done so the docs can look for any chest congestion which might compromise me to start the treatment.
So, that's the BIG news!
I came home today and was asleep within minutes, and stayed that way for over four hours. On waking I felt as if I were in a bit of a fog as my brain has been trying to process this sudden change in everything. I am better now, and at least able to write the news.
Let's go over the remainder of the labs now. I will write comparison numbers from April's labs as well so you can see the changes that have happened in two months. (*Red numbers are abnormal readings. **NR=Normal Range)
Glomelular Filtration Rate (GFR) 14.90% April 2012: 17.6%
Blood Urea Nitrogen (BUN) 43.0 (NR 5-26) April 2012: 40
Serum Creatinine 4.50 (NR 0.5-1.5) April 2012: 3.90
Glucose 103 (NR 65-109) April 2012: 101
Phosphorous 4.1 (NR 2.5-4.5) April 2012: 3.5
*I will have to start watching phosphorous while on dialysis.
Sodium (NA+) and Potassium (K+) both within NR and nearly identical to April.
White Blood Cells (WBC) 4.20 (NR 4.50-11.0) April 2012: 5.06
Red Blood Cells (RBC) 4.03 (NR 4.7-6.1) April 2012: 4.19
Monocytes%, Lymphocytes#, Eosinophils% and Basophils% all abnormal by moderate to severe rates.
Hematacrit (HCT) 33.4 (NR 42-52) April 2012: 33.6
Hemoglobin (HGB) 11.6 (NR 14-18) April 2012: 11.9
Parathyroid Hormone (PTH) 75.3 pg/ml (NR 12-88) April 2012: 90.4
Lipids all look good.
Vitamin D (Vit D, 25-OH) 38.3 (NR 32-100)
Weight 235 April 2012: 243 (-8 lbs)
That's all of the relevant numbers. When I start dialysis I will have more numbers to watch, more meds to take, and various related things to look for that I currently know absolutely nothing about.
So, it is on to the next phase. I will keep you up to date on everything that happens, all the decisions to be made, all the tests to be run, etc.
Let's continue on this journey together.
Good Health to All!
ScottW
*On the chest xray I learned something unexpected about myself. I had to actually get two xrays done (different views) because my lungs are too wide (side to side) to fit onto a single xray pic. This means I have larger capacity lungs than the normal adult male.
I asked if this might be due to the fact I have exercised nearly my entire life, and was told, "Aside from any genetic propensities, a lifetime of exercising will absolutely cause you to have larger lungs." I never knew that about myself. Kinda Cool! :o)
Saturday, June 2, 2012
Progression Photos #1
I have been taking photos of myself since the PCKD was diagnosed so that I could create a visual record of how this whole thing is affecting me physically. Here are some of those photos in order from earliest to now...
There you are...my first progression of photos from over the course of this path. Notice the differences along the way?
I will of course, continue to take my photos as things continue. I will update that in another year or so, depending on how everything goes, I guess.
Good Health to All!
ScottW
 |
My baseline photo, from Dec. 2007 when I was fit and healthy. By then the S/S's of the disease had begun to hit me hard.  Just over one year post-DX (diagnosis).   I remember (amazingly enough!) not feeling very well that day...hence, the frown.  This was a few months after I started cutting my hair really short because of the minoxidil we were using as a vasodilator. As you can see from the previous pics, I certainly didn't need additional hair growth!     |
I will of course, continue to take my photos as things continue. I will update that in another year or so, depending on how everything goes, I guess.
Good Health to All!
ScottW
Friday, June 1, 2012
01 June 2012
Just a quick entry today.
I am on my way to do the next round of lab work for my nephrology appointment on Monday, 04 June. Let's hope for some positive movement again--you know, the whole 'Bad news is good news' thing.
The appointment is at 1030a local time, so I will get the results on this blog as soon as I can after that.
Good Health to All!
ScottW
**Update (0100p): LOTS of tests from the blood draw today. They include Renal Panel, Lipids, Cholesterol, CBC, and Parathyroid. It appears that my doc wants to look at whether or not other systems are being affected by the advancement of the disease.
I am on my way to do the next round of lab work for my nephrology appointment on Monday, 04 June. Let's hope for some positive movement again--you know, the whole 'Bad news is good news' thing.
The appointment is at 1030a local time, so I will get the results on this blog as soon as I can after that.
Good Health to All!
ScottW
**Update (0100p): LOTS of tests from the blood draw today. They include Renal Panel, Lipids, Cholesterol, CBC, and Parathyroid. It appears that my doc wants to look at whether or not other systems are being affected by the advancement of the disease.
Subscribe to:
Posts (Atom)
