I had a nephrology appointment today. Here's the latest...
-Kidney Function: 18.2% (Slightly down from 19.3)
-Blood Nitrogen 44.0 (Up from 37.0. NR 5-26)
-Creatinine 3.8 (Up from 3.6. NR .5-1.5)
-Hematicrit 35.0 (Down from 35.2. NR 42-52)
-I don't have the PTH numbers, and I wasn't told the percentage, so I don't know if it has improved or worsened.
So, I am [somewhat] stable as far as labs go. However, if you've been reading my blog, you'll know that I am feeling worse than ever. For now I am glad that there was stability because the AV Fistula I'm having surgery for on Wednesday has to have time to heal and strengthen. So next month it will be OK if I have another drop! ;o)
Also, my weight gain from last month was, as I suspected, an anomaly. My weight today was 257 (down from 266). I think the gain last month was due to being bundled up because of cold weather, in addition to a lot of water weight gain.
On an interesting note, my doc stated that my Eosoniphil % is up for the third month in a row. He stated I am having an allergic reaction to something because the Eosoniphil number reflects that. Well, I'm not allergic to pollens, molds, etc, nor any other environmental cause; so, it's a mystery. Could be because the PCKD is affecting so many of my body systems that my ability to defend against environmental factors is compromised. I don't know. It's certainly nothing evident.
That's about all for today.
I already stated that the AV Fistula surgery is on Wednesday. Too bad I can't watch it, though; I'll be under general anesthesia. Maybe the doc will have pics or a video. I'd love to see either.
This may be my last entry for a while. I'll be on some hefty meds following the surgery, so I doubt I'll be in any shape to write a blog. So, until next time, take care; and remember to check back for my next entry!
Good Health to All!
ScottW
Monday, March 28, 2011
Thursday, March 24, 2011
24 March 2011 (2nd Post)
Here's the outcome of my Vascular Surgeon appointment...
Today both arms were scanned with ultrasound to see which would be better for accommodating an AV Fistula. Turns out that my L arm is best.
So, I'll have the surgery next Wednesday (30 March). The procedure should take about 1.5 hours. Unfortunately, I'll be under general anesthesia so I won't be able to watch the surgery (that would have been so cool!). Being an outpatient procedure, I'll be home a few hours after the surgery. Initial healing should only take about a week. After that, it will be three to four months before the fistula is mature enough to use.
As in any operation, there are risks. With an AV Fistula these include:
-Poor blood circulation to the hand (more common in elderly patients);
-Numbness either at the surgery site, or affecting the whole hand;
-and a 10% chance that the fistula just won't work.
The surgeon is confident that, because of my age and health (aside from the PCKD), I am an excellent candidate for successful surgery. He stated that the Pt's most at risk for complications [resulting from this surgery] are elderly, and mostly women. Plus, this demographic usually has diabetes complications which further inhibit healthy development of the AV Fistula.
So, that's the news. The next step is literally in front of me.
Time to get started, eh?
Good Health to all!
ScottW
Today both arms were scanned with ultrasound to see which would be better for accommodating an AV Fistula. Turns out that my L arm is best.
So, I'll have the surgery next Wednesday (30 March). The procedure should take about 1.5 hours. Unfortunately, I'll be under general anesthesia so I won't be able to watch the surgery (that would have been so cool!). Being an outpatient procedure, I'll be home a few hours after the surgery. Initial healing should only take about a week. After that, it will be three to four months before the fistula is mature enough to use.
As in any operation, there are risks. With an AV Fistula these include:
-Poor blood circulation to the hand (more common in elderly patients);
-Numbness either at the surgery site, or affecting the whole hand;
-and a 10% chance that the fistula just won't work.
The surgeon is confident that, because of my age and health (aside from the PCKD), I am an excellent candidate for successful surgery. He stated that the Pt's most at risk for complications [resulting from this surgery] are elderly, and mostly women. Plus, this demographic usually has diabetes complications which further inhibit healthy development of the AV Fistula.
So, that's the news. The next step is literally in front of me.
Time to get started, eh?
Good Health to all!
ScottW
24 March 2011
Today I get to do two things...
First, I'm doing a blood draw for next Monday's nephrology appointment.
Right after that I am going to see a vascular surgeon for the consult phase for having the AV Fistula surgery.
I'll let you know how these both go!
Also, the past five days have seen wide swings in how I've been feeling. The first two were just like the previous twenty plus...really nauseated, horrid headache, etc.
Then this last Tuesday I had a "breather" day. In other words, I didn't feel too bad, my headache was down, the edema was decreased, etc. These 'breather' days are a nice break once in a while. At the same time I was enjoying a better day, I was wondering what I'd be feeling like the next day.
Well, the answer was awful, once again. The day started out with my headache at a solid 9.5. This was followed by increased nausea, zero appetite, and a drastic increase of peripheral edema. Even my wife remarked how bad my legs looked. Plus, I was thoroughly exhausted from a tremendously poor sleep the night before.
So, that was my yesterday. Today I slept a solid 8.5 hours; awaking only because my back was really sore from laying in bed so long. My headache is ever-present, but the nausea is down. Peripheral edema has not decreased at all, and my edema check showed color at +5, and rebound at +15.
That's all for now because I need to get out the door for my two appointments. Again, I'll let you know what happens.
Good Health to All!
ScottW
First, I'm doing a blood draw for next Monday's nephrology appointment.
Right after that I am going to see a vascular surgeon for the consult phase for having the AV Fistula surgery.
I'll let you know how these both go!
Also, the past five days have seen wide swings in how I've been feeling. The first two were just like the previous twenty plus...really nauseated, horrid headache, etc.
Then this last Tuesday I had a "breather" day. In other words, I didn't feel too bad, my headache was down, the edema was decreased, etc. These 'breather' days are a nice break once in a while. At the same time I was enjoying a better day, I was wondering what I'd be feeling like the next day.
Well, the answer was awful, once again. The day started out with my headache at a solid 9.5. This was followed by increased nausea, zero appetite, and a drastic increase of peripheral edema. Even my wife remarked how bad my legs looked. Plus, I was thoroughly exhausted from a tremendously poor sleep the night before.
So, that was my yesterday. Today I slept a solid 8.5 hours; awaking only because my back was really sore from laying in bed so long. My headache is ever-present, but the nausea is down. Peripheral edema has not decreased at all, and my edema check showed color at +5, and rebound at +15.
That's all for now because I need to get out the door for my two appointments. Again, I'll let you know what happens.
Good Health to All!
ScottW
Saturday, March 19, 2011
19 March 2011
ANOTHER terrible week.
I haven't written in a week because I've only been trying to get through each day. I have felt terrible in just about every way possible. As bad as I've been feeling [up to this point], I know that things will just get worse.
I still haven't had a Promethazine-free day. That's now nearly 20 days in a row of taking at least one of the anti-emetics--and I usually have to take two or more doses per day. Since this latest episode began I haven't had a meal that I've actually enjoyed. I eat because it's food; and not because it tastes good. My appetite remains down. Feeling like I do certainly doesn't lend one to eating much.
My headache rages on. No real relief. I had two consecutive days that I was taking two T3's at a time in order to keep it under control. Not a fun couple of days. I have since gotten a handle on the headache and it is down to a 9 or so.
LOTS of vertigo and general dizziness.
My eyesight has been OK so long as I don't want to read anything. Even with my normal glasses (for reading--due to Ocular Divergence), I am having a difficult time with most reading. As has been the case [up til now], how I feel from day to day is how my eyesight goes.
My breathe has been atrocious. That's putting it mildly. Even after brushing I've constantly got a nasty taste in my mouth. Up close it obviously is noticed by others; though they are too courteous to say anything--which I appreciate. The ammonia smell and taste remain ever present. The cinnamon Altoids continue to help with that, at least.
My sleep has been just as unrestful as ever. I'm sleeping more because of the Promethazine increase, yet I continue to awaken as exhausted as when I went to sleep--if not more so. My naps are also leaving me without any real rest. As a result, my body is really dragging.
Body aches from head to toe continue. I haven't found anything that truly alleviates them.
My urine production and flow remain constant--which is a VERY good thing! No blood, no kidney stones,etc. I'll take that, at least!
In spite of my exhaustion and general feeling, my mind remains in a good place. I don't always come across with strength and confidence; but I continue to look forward to better days. It's interesting how I feel weak, find resolve, grow stronger [mentally], then feel worse--followed by weakness, strengthening and optimism, etc. If I felt this bad immediately--instead of over a period of time--I don't know that I'd be strong enough. As it is, I have the opportunity to grow stronger as each new intensity of feeling bad occurs. It really is amazing how strong, resilient and adaptive our minds are when facing a challenge such as I am now. In my previous medical studies, I constantly remarked how amazing the human body really is. That opinion is only strengthening as I go through this.
That is all for today. I'll try to make an entry sooner than a week. It'll just depend on how I;m feeling.
Good Health to All!
ScottW
I haven't written in a week because I've only been trying to get through each day. I have felt terrible in just about every way possible. As bad as I've been feeling [up to this point], I know that things will just get worse.
I still haven't had a Promethazine-free day. That's now nearly 20 days in a row of taking at least one of the anti-emetics--and I usually have to take two or more doses per day. Since this latest episode began I haven't had a meal that I've actually enjoyed. I eat because it's food; and not because it tastes good. My appetite remains down. Feeling like I do certainly doesn't lend one to eating much.
My headache rages on. No real relief. I had two consecutive days that I was taking two T3's at a time in order to keep it under control. Not a fun couple of days. I have since gotten a handle on the headache and it is down to a 9 or so.
LOTS of vertigo and general dizziness.
My eyesight has been OK so long as I don't want to read anything. Even with my normal glasses (for reading--due to Ocular Divergence), I am having a difficult time with most reading. As has been the case [up til now], how I feel from day to day is how my eyesight goes.
My breathe has been atrocious. That's putting it mildly. Even after brushing I've constantly got a nasty taste in my mouth. Up close it obviously is noticed by others; though they are too courteous to say anything--which I appreciate. The ammonia smell and taste remain ever present. The cinnamon Altoids continue to help with that, at least.
My sleep has been just as unrestful as ever. I'm sleeping more because of the Promethazine increase, yet I continue to awaken as exhausted as when I went to sleep--if not more so. My naps are also leaving me without any real rest. As a result, my body is really dragging.
Body aches from head to toe continue. I haven't found anything that truly alleviates them.
My urine production and flow remain constant--which is a VERY good thing! No blood, no kidney stones,etc. I'll take that, at least!
In spite of my exhaustion and general feeling, my mind remains in a good place. I don't always come across with strength and confidence; but I continue to look forward to better days. It's interesting how I feel weak, find resolve, grow stronger [mentally], then feel worse--followed by weakness, strengthening and optimism, etc. If I felt this bad immediately--instead of over a period of time--I don't know that I'd be strong enough. As it is, I have the opportunity to grow stronger as each new intensity of feeling bad occurs. It really is amazing how strong, resilient and adaptive our minds are when facing a challenge such as I am now. In my previous medical studies, I constantly remarked how amazing the human body really is. That opinion is only strengthening as I go through this.
That is all for today. I'll try to make an entry sooner than a week. It'll just depend on how I;m feeling.
Good Health to All!
ScottW
Saturday, March 12, 2011
12 March 2011 (2nd Entry)
The last week has been terribly difficult.
I have been on Prometazine (anti-emetic) every day for the last eight days. On most of those days I've had to take multiple doses of the med. My stomach has been upset more than ever. Lots of nausea, poor appetite, the whole nine yards. I've been awoken three nights from nausea, and can feel it just edging me towards overwhelming nausea almost all day, every day.
The headache has been just as terrible. It's been at a constant 9.5 for days. No let up whatsoever.
My mid-back over the kidneys continues to be painful. As I've stated before, at least the T3's mask the pain. It's certainly better than tolerating it!
The edema has been back and forth. Yesterday it hit me really hard. Within a few hours my feet looked awful, and felt that way, too. Lots of itching; lots of soreness from [I assume] sudden stretching of the skin--it was all really unusual the way my feet, legs and hands all felt. Today is about 10% better, though the edema hasn't decreased at all.
I continue to take multiple naps every day, and remain exhausted at all times. I haven't been able to find any combination of things that alleviates this.
I've also been experiencing a lot of body aches that go from head to toe...literally. I feel like my body is falling apart.
The other day my wife told me that I am now looking as sick as I've been feeling. I've noticed it, too. This just tells me that things are advancing the way we need them too; you know, one of those 'bad is good'scenarios.
That's all the energy I've got for today...
Good Health to All!
ScottW
I have been on Prometazine (anti-emetic) every day for the last eight days. On most of those days I've had to take multiple doses of the med. My stomach has been upset more than ever. Lots of nausea, poor appetite, the whole nine yards. I've been awoken three nights from nausea, and can feel it just edging me towards overwhelming nausea almost all day, every day.
The headache has been just as terrible. It's been at a constant 9.5 for days. No let up whatsoever.
My mid-back over the kidneys continues to be painful. As I've stated before, at least the T3's mask the pain. It's certainly better than tolerating it!
The edema has been back and forth. Yesterday it hit me really hard. Within a few hours my feet looked awful, and felt that way, too. Lots of itching; lots of soreness from [I assume] sudden stretching of the skin--it was all really unusual the way my feet, legs and hands all felt. Today is about 10% better, though the edema hasn't decreased at all.
I continue to take multiple naps every day, and remain exhausted at all times. I haven't been able to find any combination of things that alleviates this.
I've also been experiencing a lot of body aches that go from head to toe...literally. I feel like my body is falling apart.
The other day my wife told me that I am now looking as sick as I've been feeling. I've noticed it, too. This just tells me that things are advancing the way we need them too; you know, one of those 'bad is good'scenarios.
That's all the energy I've got for today...
Good Health to All!
ScottW
12 March 2011
Finally!
I'm FINALLY scheduled to see a vascular surgeon for the AV Fistula. The initial appointment is on the 24th at which time we'll do an ultrasound of my arm, then discuss the placement of the fistula. [I'm assuming that] After that, I'll get scheduled for the AV Fistula procedure.
This has been dragging on way too long; but I was trying to go through a Community Health services organization in hopes of having the service donated--I lost my insurance last Fall and everything, until I get Medicare, is on my dime--and the guys there really dragged their feet about working with me. So, when I found out for sure that they turned me down, I immediately contacted the vascular surgeon and got things scheduled.
Hopefully, by the end of the month I'll be healing from the fistula Op.
Movement! Woo-Hoo!!
Good Health to All!
ScottW
I'm FINALLY scheduled to see a vascular surgeon for the AV Fistula. The initial appointment is on the 24th at which time we'll do an ultrasound of my arm, then discuss the placement of the fistula. [I'm assuming that] After that, I'll get scheduled for the AV Fistula procedure.
This has been dragging on way too long; but I was trying to go through a Community Health services organization in hopes of having the service donated--I lost my insurance last Fall and everything, until I get Medicare, is on my dime--and the guys there really dragged their feet about working with me. So, when I found out for sure that they turned me down, I immediately contacted the vascular surgeon and got things scheduled.
Hopefully, by the end of the month I'll be healing from the fistula Op.
Movement! Woo-Hoo!!
Good Health to All!
ScottW
Friday, March 4, 2011
04 March 2011
As things get on I am having increasing difficulty in summoning the strength to write my blog. My brain is as exhausted as the rest of my body. Writing in any of my blogs (and not just this one) is starting to seem overwhelming.
Things have continued to go downhill. My headache is every present, and almost never less than a 9. My daily usage of the T3's for my headache has increased to a daily average of over 3. The kidney pain I'm experiencing also adds to that, as well.
Speaking of the pain over my kidneys...That continues unabated. As earlier, it is stronger on the R side. The new recliner I have has been a tremendous help in making me more comfortable. It would definitely seem that a cyst or two (or more) are quite enlarged and highly sensitive.
In spite of my exhaustion, I am only sleeping about five hours per night. I awaken feeling as if I haven't yet gone to sleep. Any naps I take have the same result. Even if I sleep over twelve hours a day (including naps), I am walking around in a fog, yawning all day, and feeling like every bit of strength has been drained from my body. I have never in my life felt such thorough, utter exhaustion. Unless you experience it, I don't think you'd remotely understand...I know I didn't.
I seem to be feeling worse more and more with each passing day. It no longer feels like having the flu. I have tried to describe it, but always come up short. Let me try again...
-The nausea is constantly present. It just depends of how severe it is at any given moment. The last week it has been increasingly bad. I am taking Promethazine (anti-emetic) every day now.
-The general malaise over my whole body has intensified (?). I'm sure it goes back to the exhaustion.
-My appetite is the worst it has yet been. No food is actually appetizing; now I'm eating whatever is less unappealing. (Seriously!) as a result, I am snacking less, eating less (when I do eat), drinking less fluids of any type, etc. My daily intake of fluids has dropped from [approx.] 100 fl. oz. down to [approx.] 64 fl. oz. My total food intake (including snacks) has dropped to about 2.5 cups per day. There are days now and then when I eat more than that; but also days when I eat next to nothing. My one daily meal is now between 1.75-2.0 cups.
-My so-called "good days" are now only days when I don't feel terrible. Today is a "good day." Yesterday (Thursday) was a
really bad day. I actually complained for once. My nausea was intense in spite of the anti-emetic, my headache was overwhelming, my exhaustion was beyond overwhelming, and my brain was thoroughly tired, too. Near the end of the day I asked my wife if I could whine a little--she said yes; I told her, "I am tired of feeling so damned crappy all of the time." (That's it. I just needed to get that out.) I felt a little better (mentally) after that.
So, even after all of that, I don't think I came even close to telling things accurately. But at least I tried.
I have found something that helps me tolerate the ammonia. I had been using some wintergreen Ice Breakers to help alleviate the taste and odor. Well, that product had become ineffective so I have been looking for another solution. I found that--or at least, one that works for now--in the form of sugar free cinnamon Altoids. The intense burst of cinnamon obliterates the ammonia odor and taste. So for now, I have a way to combat that bit of nastiness.
There were a few more things I wanted to tell you; but, they're gone. I don't remember...what a surprise, eh? (That one's for my Cannuck friends!) :o)
Good Health to All!
ScottW
Things have continued to go downhill. My headache is every present, and almost never less than a 9. My daily usage of the T3's for my headache has increased to a daily average of over 3. The kidney pain I'm experiencing also adds to that, as well.
Speaking of the pain over my kidneys...That continues unabated. As earlier, it is stronger on the R side. The new recliner I have has been a tremendous help in making me more comfortable. It would definitely seem that a cyst or two (or more) are quite enlarged and highly sensitive.
In spite of my exhaustion, I am only sleeping about five hours per night. I awaken feeling as if I haven't yet gone to sleep. Any naps I take have the same result. Even if I sleep over twelve hours a day (including naps), I am walking around in a fog, yawning all day, and feeling like every bit of strength has been drained from my body. I have never in my life felt such thorough, utter exhaustion. Unless you experience it, I don't think you'd remotely understand...I know I didn't.
I seem to be feeling worse more and more with each passing day. It no longer feels like having the flu. I have tried to describe it, but always come up short. Let me try again...
-The nausea is constantly present. It just depends of how severe it is at any given moment. The last week it has been increasingly bad. I am taking Promethazine (anti-emetic) every day now.
-The general malaise over my whole body has intensified (?). I'm sure it goes back to the exhaustion.
-My appetite is the worst it has yet been. No food is actually appetizing; now I'm eating whatever is less unappealing. (Seriously!) as a result, I am snacking less, eating less (when I do eat), drinking less fluids of any type, etc. My daily intake of fluids has dropped from [approx.] 100 fl. oz. down to [approx.] 64 fl. oz. My total food intake (including snacks) has dropped to about 2.5 cups per day. There are days now and then when I eat more than that; but also days when I eat next to nothing. My one daily meal is now between 1.75-2.0 cups.
-My so-called "good days" are now only days when I don't feel terrible. Today is a "good day." Yesterday (Thursday) was a
really bad day. I actually complained for once. My nausea was intense in spite of the anti-emetic, my headache was overwhelming, my exhaustion was beyond overwhelming, and my brain was thoroughly tired, too. Near the end of the day I asked my wife if I could whine a little--she said yes; I told her, "I am tired of feeling so damned crappy all of the time." (That's it. I just needed to get that out.) I felt a little better (mentally) after that.
So, even after all of that, I don't think I came even close to telling things accurately. But at least I tried.
I have found something that helps me tolerate the ammonia. I had been using some wintergreen Ice Breakers to help alleviate the taste and odor. Well, that product had become ineffective so I have been looking for another solution. I found that--or at least, one that works for now--in the form of sugar free cinnamon Altoids. The intense burst of cinnamon obliterates the ammonia odor and taste. So for now, I have a way to combat that bit of nastiness.
There were a few more things I wanted to tell you; but, they're gone. I don't remember...what a surprise, eh? (That one's for my Cannuck friends!) :o)
Good Health to All!
ScottW
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