Well, in the last six days I haven't had any worsening of most of my S/S's.
About the only exception to that is the peripheral edema. I've had a few episodes of increased swelling. One evening my lower legs went from mildly edemic to severe in a matter of 90 minutes, or so. When my legs swell like that the rebound test is +5 color, and +15 rebound. After the latest episode of severe pedal edema, my L ankle was all purple, and just looked ugly.
My hands have also shown noticeable edemic increase. I can see it easily in my fingers and the back of my hands. When the edema increases in my hands my fingers feel tight, and the rest of my hand itches and also feels tight.
The flank pain remains constant. I am always aware of it, and have noticed increasing positional pain--though it has not become severe, at this point.
My eyesight has been terrible and badly out of focus the last four or five days. So much so that even my reading glasses don't help much. Mind you, I'm talking about my near-sightedness. My far-sightedness is perfectly great.
The headache remains as it constantly is. No letup, no relief. The headache is now at 27 months (and counting) since onset.
Anyway, because things have been so consistent, that's about all I've got for this update.
Good Health to All!
ScottW
Friday, February 24, 2012
Newsletter: Cardiovascular Health and Your Transplant
Here is the latest newsletter from The Transplant Experience, the educational arm of Astellas Pharmaceuticals. If you are a pre-transplant recipient, I suggest that you visit their website so that you too have access to the vast array of important information they offer.
Go to www.thetransplantexperience.com for registration. *(No, I don't get anything for that recommendation. I just know the value of the information and tools you receive.)
Cardiovascular Health and Your Transplant
Meet Mary Baliker
Go to www.thetransplantexperience.com for registration. *(No, I don't get anything for that recommendation. I just know the value of the information and tools you receive.)
Cardiovascular Health and Your Transplant
Meet Mary Baliker
Kidney transplant recipient (1980, 1984, 1988, 1999)
Mary Baliker's remarkable transplant experience has taught her, among other things, how staying active—both physically and mentally—can help promote long-term success post-transplant.
Mary's Transplant Story
Mary was enjoying a normal childhood when, at age 9, she was diagnosed with glomerulonephritis, a chronic disease of the kidneys. Since there was no standard of care for children at the time, maintaining a strict renal diet and monitoring her blood pressure were all she could do to try to keep her kidneys healthy. Mary’s disease went into remission until, as a senior in high school, she again started experiencing signs of poor kidney function. This time, her doctors placed her on an aggressive dialysis regimen that had her “missing a lot of school and not doing the things I wanted to do.” It was shortly thereafter that Mary’s brother, Doug, made the choice to be her living donor and give her a new kidney, which enabled her to attend prom, graduate from high school, and return to a more normal life.
Due to complications, Mary has had a total of four kidney transplants, all at UW Hospital and Clinics. Each procedure has presented a unique set of challenges, preparing her in different ways for the journey ahead—but affirming, always in the same way, her daily will to “live, laugh, and love.” Staying Physically ActiveMary learned early in life the importance of remaining disciplined in following a healthy lifestyle. And with February as Heart Health Month, Mary reminds us to take simple steps to protect cardiovascular health, now and into the future:
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Keeping Mentally FitFor Mary, the commitment to overall health and well-being is as much emotional as it is physical:
Mary Baliker is an Ambassador for Transplant Experience and has received compensation from Astellas Pharma US, Inc., for speaking engagements. Zumba is a registered trademark of Zumba Fitness, LLC. | ||||||
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Saturday, February 18, 2012
18 February 2012
In the five days since my last entry, I have yet to get even a small break from the S/S's hitting me so hard.
Just like last time, let's begin by discussing the headache. Ever-present; no relief; go to sleep with it; wake in the night because of it; T3's are barely touching it; making me miserable all by itself. Yeah...that pretty much sums up this damned headache.
Been having LOTS of that ill feeling, as well. There is no readily apparent reason for the uptick of its intensity; it just has. Coupled with the headache, it's no wonder I've been dragging all day...every day.
The bilateral flank pain has increased as well. No huge pangs, but lots of positional flare-ups. Plus, sitting in anything in a straight up position has also resulted in a lot of tenderness over both kidneys. This is happening in both regular and soft-backed chairs such as my recliner. I've even had that tenderness happen while laying in bed.
My sleep has continued to be lousy, unpredictable and un-restful. LOTS and LOTS of exhaustion all day, every day. A few days ago I was out helping with grocery shopping. I had decided to walk (rather than get a motorized cart). I was doing ok for most of the time until I suddenly, literally felt my energy level drain completely away. One minute I was good, and the next I could barely walk. I have never experienced such an energy drain before; and I didn't like it! I had just enough energy to get back to the car, then into the house, and spent the rest of the day just sitting...completely exhausted. I don't think I moved hardly at all until I went to bed.
My eyesight continues to go from good to bad depending on how I feel from day to day. One of the appointments I'll be making is with an opthamologist (not an optometrist), because an opthamologist will be able to work with my ocular divergence, a rare condition which involves the muscles of the eyes not holding the eyes in proper alignment when reading, leading to muscular strain and increased incidences of headaches. I already have glasses for reading which I am using right now, in fact, as I type. Anyhow, the opthamologist will be able to differentiate between the signs between divergence and deteriorating eyesight, and provide a prescription that will aid both--assuming my corneal/lens focus is actually deteriorating and not merely trying to adapt to what's happening throughout my body because of the failing kidneys.
I've gotten fully used to the increased ammonia odors coming from my breath. I still notice when it gets worse that the current level; but most of the time [now] I don't pay attention to it. On the other hand, my breath has taken a severe turn for the worse. I can't even describe my breath right now aside from saying it can be terribly 'foul.' It grosses me out when I smell it. Brushing my teeth hasn't helped it much, nor have the cinnamon Altoids.
So I'm going to try using a mouthwash several times each day. That should start sometime next week. I'll let you know how it goes.
My urinary characteristics are little changed since my last report on this. Still no obvious kidney stones, no obvious blood. Color, foaminess, clarity, etc have all been consistent. Nothing to be alarmed about at this time.
I've taken a week's worth of the new med Zemplar, and haven't had any noticeable side effects. These may be more cumulative than sudden, and I likely won't be the one to notice the neurological changes--I'll depend on others to point them out.
The level of edema continues to be unpredictable. I haven't had a severe edemic increase in some time. Instead, I have a constant level that never really decreases, and have moderate swelling on top of that. The pattern of development and loss is always the same, though. The only real change in this area is that my hands have been swelling with more consistency than anytime previous. I haven't noticed it in my arms; just in the hands.
In fact, today my hands feel and look swollen with obvious edemic increase.
As I do every once in a while, I was taking a good look at myself in the mirror to note any obvious physical changes. This time I noticed that my face is thinning out a lot. My muscle mass is quickly disappearing. My legs are the thinnest they've been in decades, as is my upper torso.
The only reason my midsection is larger is because of the two hernias that developed early in the explosion of disease S/S's that began about two months after diagnosis. Hernias happen in a number of PCKD patients, and must be repaired prior to transplantation consideration; which means, I get to have both repaired in the near future.
That's all I can remember for today. As I always do, I'm hoping for a better week ahead. I know...that likely won't happen; but one can hope, right? Have a great week!
Good Health to All!
ScottW
Just like last time, let's begin by discussing the headache. Ever-present; no relief; go to sleep with it; wake in the night because of it; T3's are barely touching it; making me miserable all by itself. Yeah...that pretty much sums up this damned headache.
Been having LOTS of that ill feeling, as well. There is no readily apparent reason for the uptick of its intensity; it just has. Coupled with the headache, it's no wonder I've been dragging all day...every day.
The bilateral flank pain has increased as well. No huge pangs, but lots of positional flare-ups. Plus, sitting in anything in a straight up position has also resulted in a lot of tenderness over both kidneys. This is happening in both regular and soft-backed chairs such as my recliner. I've even had that tenderness happen while laying in bed.
My sleep has continued to be lousy, unpredictable and un-restful. LOTS and LOTS of exhaustion all day, every day. A few days ago I was out helping with grocery shopping. I had decided to walk (rather than get a motorized cart). I was doing ok for most of the time until I suddenly, literally felt my energy level drain completely away. One minute I was good, and the next I could barely walk. I have never experienced such an energy drain before; and I didn't like it! I had just enough energy to get back to the car, then into the house, and spent the rest of the day just sitting...completely exhausted. I don't think I moved hardly at all until I went to bed.
My eyesight continues to go from good to bad depending on how I feel from day to day. One of the appointments I'll be making is with an opthamologist (not an optometrist), because an opthamologist will be able to work with my ocular divergence, a rare condition which involves the muscles of the eyes not holding the eyes in proper alignment when reading, leading to muscular strain and increased incidences of headaches. I already have glasses for reading which I am using right now, in fact, as I type. Anyhow, the opthamologist will be able to differentiate between the signs between divergence and deteriorating eyesight, and provide a prescription that will aid both--assuming my corneal/lens focus is actually deteriorating and not merely trying to adapt to what's happening throughout my body because of the failing kidneys.
I've gotten fully used to the increased ammonia odors coming from my breath. I still notice when it gets worse that the current level; but most of the time [now] I don't pay attention to it. On the other hand, my breath has taken a severe turn for the worse. I can't even describe my breath right now aside from saying it can be terribly 'foul.' It grosses me out when I smell it. Brushing my teeth hasn't helped it much, nor have the cinnamon Altoids.
So I'm going to try using a mouthwash several times each day. That should start sometime next week. I'll let you know how it goes.
My urinary characteristics are little changed since my last report on this. Still no obvious kidney stones, no obvious blood. Color, foaminess, clarity, etc have all been consistent. Nothing to be alarmed about at this time.
I've taken a week's worth of the new med Zemplar, and haven't had any noticeable side effects. These may be more cumulative than sudden, and I likely won't be the one to notice the neurological changes--I'll depend on others to point them out.
The level of edema continues to be unpredictable. I haven't had a severe edemic increase in some time. Instead, I have a constant level that never really decreases, and have moderate swelling on top of that. The pattern of development and loss is always the same, though. The only real change in this area is that my hands have been swelling with more consistency than anytime previous. I haven't noticed it in my arms; just in the hands.
In fact, today my hands feel and look swollen with obvious edemic increase.
As I do every once in a while, I was taking a good look at myself in the mirror to note any obvious physical changes. This time I noticed that my face is thinning out a lot. My muscle mass is quickly disappearing. My legs are the thinnest they've been in decades, as is my upper torso.
The only reason my midsection is larger is because of the two hernias that developed early in the explosion of disease S/S's that began about two months after diagnosis. Hernias happen in a number of PCKD patients, and must be repaired prior to transplantation consideration; which means, I get to have both repaired in the near future.
That's all I can remember for today. As I always do, I'm hoping for a better week ahead. I know...that likely won't happen; but one can hope, right? Have a great week!
Good Health to All!
ScottW
Monday, February 13, 2012
13 February 2012
Let's start today's entry talking about the headache. Why? Because it has been nastier than anything else the last number of days. My T3 usage is currently averaging 5.25/day in order to counter my headache ranging between 9.5-10. I could actually be taking more T3's than I do, and still be within the Rx range.
I start taking the Zemplar today [for the increased PTH level]. Hopefully I'll not have any side effects other than reducing the cardiac palpitations I've been experiencing.
My sleep has been all over...as usual. For instance, a few days ago I slept a good seven hours, was awake for five hours, then napped for four more hours. That night I still slept for 9.5 hours!
The flank pain continues its consistent nature. Still no spikes in pain levels, and I've actually had no positional pains while sitting. The flank pain is just there. A nice, albeit temporary, reprieve.
My appetite has been unsteady lately. I've not been snacking much, and my food intake has ranged between .75 cups-1.5 cups/day. Part of this is because most foods continue to be unappealing. I taste very little of the foods, and rarely smell them either. Plus, most "meals" I eat cause lots of nausea either while eating, or about five minutes after I'm done. Throw in constantly feeling ill and...voila! Poor appetite.
Speaking of feeling ill...LOTS! Yuck, yuck, yuck! When that feeling is coupled with nausea, I really struggle mentally simply because I feel terrible for hours on end. I have to consciously decide to get myself active (as much as I can), and to keep my mind in a good place. Luckily, I am still able to do these things, and I can lift my mental burden out of the danger zone which leads to depression. I will admit that there are times when I struggle that things are harder than ever. I'm certainly not immune from that. However, I continue to see positive results from my efforts every day to keep my mind in a place of positivity and strength; to laugh often, and smile as much as I can. If not for this ability, I would have likely passed into depression some time ago.
I learned on Friday that the Medicare I will have will be for all possible care. This includes Clinical, hospital, dental, and Rx. During my doctor visit last week I was given a list of specialists to see that will get me on my way to the pre-transplant work-ups. I'll schedule these for March or April.
here was one or two more things I wanted to mention but as usual, they have slipped my mind. So, until next time...
Good Health to All!
ScottW
I start taking the Zemplar today [for the increased PTH level]. Hopefully I'll not have any side effects other than reducing the cardiac palpitations I've been experiencing.
My sleep has been all over...as usual. For instance, a few days ago I slept a good seven hours, was awake for five hours, then napped for four more hours. That night I still slept for 9.5 hours!
The flank pain continues its consistent nature. Still no spikes in pain levels, and I've actually had no positional pains while sitting. The flank pain is just there. A nice, albeit temporary, reprieve.
My appetite has been unsteady lately. I've not been snacking much, and my food intake has ranged between .75 cups-1.5 cups/day. Part of this is because most foods continue to be unappealing. I taste very little of the foods, and rarely smell them either. Plus, most "meals" I eat cause lots of nausea either while eating, or about five minutes after I'm done. Throw in constantly feeling ill and...voila! Poor appetite.
Speaking of feeling ill...LOTS! Yuck, yuck, yuck! When that feeling is coupled with nausea, I really struggle mentally simply because I feel terrible for hours on end. I have to consciously decide to get myself active (as much as I can), and to keep my mind in a good place. Luckily, I am still able to do these things, and I can lift my mental burden out of the danger zone which leads to depression. I will admit that there are times when I struggle that things are harder than ever. I'm certainly not immune from that. However, I continue to see positive results from my efforts every day to keep my mind in a place of positivity and strength; to laugh often, and smile as much as I can. If not for this ability, I would have likely passed into depression some time ago.
I learned on Friday that the Medicare I will have will be for all possible care. This includes Clinical, hospital, dental, and Rx. During my doctor visit last week I was given a list of specialists to see that will get me on my way to the pre-transplant work-ups. I'll schedule these for March or April.
here was one or two more things I wanted to mention but as usual, they have slipped my mind. So, until next time...
Good Health to All!
ScottW
Wednesday, February 8, 2012
08 February 2012
Alright, here's the latest news concerning the disease...
Nearly identical to the last two times! (In other words...no movement in the direction we want.)
The two main differences:
1) My total kidney function rose for the second time in a row to 18.7% (+.5)
2) My PTH (Parathyroid Hormone) rose to 1.85% (+.60)
The GFR--or, kidney function--is the highest it has been since last February (2011). As I've stated before, this upward movement will happen for no apparent reason. In fact, it's happened to me a few times previous to this latest rise.
The PTH level has my doctor concerned. The normal range for PTH is .80-1.10. Last visit I had a 1.25%, and now a 1.85%. This high level can cause what is known as Hypercalcemia--or, way too much calcium in your body. When this happens you might experience Arrythmias (heart palpitations, murmurs, etc), which I have already experienced numerous times, increased incidences of Kidney Stones, Nervous System issues, and become at increased risk of Osteoporosis in which your bones actually release too much calcium and become brittle, leading to easily broken bones throughout the body.
So, my doctor prescribed Zemplar (Paricalcitol), 1 McG (Microgram) 3x's/week. This med will help in reducing the blood calcium levels and restoring the PTH to its normal parameters. Side effects include loss of concentration, and other similar neurological signs.
My weight was also nearly identical at 241 pounds (+1 lb of water weight). I've decided to alter my weight reading for my blog because I have five pounds of titanium on my lower spine. So, my actual body weight is 236 lbs.
So, no obvious movement in the desired direction. Oh well. I know that things will end up where we need; it's just a matter of time. Two months until my next visit.
If you have any questions, please ask me through the comment section under any post, and I will answer via the same.
Good Health to All!
ScottW
Nearly identical to the last two times! (In other words...no movement in the direction we want.)
The two main differences:
1) My total kidney function rose for the second time in a row to 18.7% (+.5)
2) My PTH (Parathyroid Hormone) rose to 1.85% (+.60)
The GFR--or, kidney function--is the highest it has been since last February (2011). As I've stated before, this upward movement will happen for no apparent reason. In fact, it's happened to me a few times previous to this latest rise.
The PTH level has my doctor concerned. The normal range for PTH is .80-1.10. Last visit I had a 1.25%, and now a 1.85%. This high level can cause what is known as Hypercalcemia--or, way too much calcium in your body. When this happens you might experience Arrythmias (heart palpitations, murmurs, etc), which I have already experienced numerous times, increased incidences of Kidney Stones, Nervous System issues, and become at increased risk of Osteoporosis in which your bones actually release too much calcium and become brittle, leading to easily broken bones throughout the body.
So, my doctor prescribed Zemplar (Paricalcitol), 1 McG (Microgram) 3x's/week. This med will help in reducing the blood calcium levels and restoring the PTH to its normal parameters. Side effects include loss of concentration, and other similar neurological signs.
My weight was also nearly identical at 241 pounds (+1 lb of water weight). I've decided to alter my weight reading for my blog because I have five pounds of titanium on my lower spine. So, my actual body weight is 236 lbs.
So, no obvious movement in the desired direction. Oh well. I know that things will end up where we need; it's just a matter of time. Two months until my next visit.
If you have any questions, please ask me through the comment section under any post, and I will answer via the same.
Good Health to All!
ScottW
Monday, February 6, 2012
06 February 2012
Two things...
First, I had a blood draw today in advance of Wednesday's nephrology appointment. The phlebotomist had difficulty getting a good stick because of moderate hypovolemia (low water presence) in my body-- I'll fill you in on the reason for this in a moment. As always, I'll give the important details of the blood work when I report on my appointment.
The above mentioned hypovolemia occurred because of what happened last night. I was woken out of a dead sleep by intense nausea at 0200a. I got up, took a half dose of the anti-emetic Promethazine, and laid back down to get more sleep. After another two long hours of persistent nausea mixed with restless sleep, I got up and took another half dose of Promethazine. After taking the med I got really, really close to emesis; but it eventually backed off and I got back into another restless sleep.
Unfortunately, I awoke again at 730a--again with intense nausea--and again got extremely close to emesis. I took yet another half dose of anti-emetic which finally stopped the nausea and allowed me to sleep for five and a half good hours. Of course on waking, I was dopey (as always) for most of the remainder of the day, but felt ok otherwise. The hypovolemia happened because of the nausea I experienced. By the time of the blood draw (at 530p), I'd only had about one cup of water all day...thus, low water level in my body.
I have no idea why I was hit so severely with nausea. I didn't do or eat anything unusual; nor have anything unusual happen that might precipitate such a terrible bout of nausea. I've never before needed a full dose and a half of Promethazine to calm it. I'm hoping that this episode is all done. NOT a fun night, or following day.
That's all I wanted to pass along. Just thought I'd relay this unusual event with it fresh in my mind.
Good Health to All!
ScottW
First, I had a blood draw today in advance of Wednesday's nephrology appointment. The phlebotomist had difficulty getting a good stick because of moderate hypovolemia (low water presence) in my body-- I'll fill you in on the reason for this in a moment. As always, I'll give the important details of the blood work when I report on my appointment.
The above mentioned hypovolemia occurred because of what happened last night. I was woken out of a dead sleep by intense nausea at 0200a. I got up, took a half dose of the anti-emetic Promethazine, and laid back down to get more sleep. After another two long hours of persistent nausea mixed with restless sleep, I got up and took another half dose of Promethazine. After taking the med I got really, really close to emesis; but it eventually backed off and I got back into another restless sleep.
Unfortunately, I awoke again at 730a--again with intense nausea--and again got extremely close to emesis. I took yet another half dose of anti-emetic which finally stopped the nausea and allowed me to sleep for five and a half good hours. Of course on waking, I was dopey (as always) for most of the remainder of the day, but felt ok otherwise. The hypovolemia happened because of the nausea I experienced. By the time of the blood draw (at 530p), I'd only had about one cup of water all day...thus, low water level in my body.
I have no idea why I was hit so severely with nausea. I didn't do or eat anything unusual; nor have anything unusual happen that might precipitate such a terrible bout of nausea. I've never before needed a full dose and a half of Promethazine to calm it. I'm hoping that this episode is all done. NOT a fun night, or following day.
That's all I wanted to pass along. Just thought I'd relay this unusual event with it fresh in my mind.
Good Health to All!
ScottW
Saturday, February 4, 2012
04 February 2012
Another week...another failure by me to get a new entry done before a week has passed. (sigh)
I'll start with the headache because this has been the worst. My average daily usage of T3 has been up to about 4.5/day because the headache continues to be at its elevated worst yet. My TMD devices are worthless (as far as these headaches are concerned), and my head has been pounding day and night. Last night, in fact, the headache woke me from my sleep at 415a. Even with using a T3, I was not asleep again until nearly 730a. Tired or rested--at least...rested as I get--the headache is just constantly assaulting me. No fun at all...
The ammonia smell continues to be nasty. It's predominant on my breath, and in my nose. I'm starting to get used to this new intensity of the ammonia, but it still hits me pretty well.
My bilateral (on both sides) flank pain over the kidneys is still going strong. About the only change is that sitting in certain positions sets off a big twinge of sharp pain over either kidney. I'll keep an eye on this new development, and note any further changes.
I've been having unusual pain on my AV fistula, right around the surgery site. I'm trying to determine if I am doing anything to precipitate the pain. I may be bending my arm too much, be pressing on the super vein, or something else. If the pain worsens or becomes more frequent, I'll likely need to call the vascular surgeon for a consult.
My twice daily regimen of meds have been hitting me especially hard this last week. I've gotten nauseated about five minutes after taking my meds without fail. Assuring plenty of liquids, or having food in my stomach; neither one seems to offset this increase in nausea.
And speaking of nausea, this has again been up and down in its daily frequency. I'm not talking nausea from meds. This is referring to the daily nausea caused by the disease. My use of Promethazine has been holding steady at around 4-7 partial doses every week. Additionally, the ill feeling has been up and down, as well. When moderate, the feeling isn't too bad. When it hits me however, it lays me out; and I am the epitome of miserable.
My appetite has seemed to take a turn for the better. I'm still averaging only one meal per day, but the amount of food taken in is better at about 1.5 cups. I'll take that!
There are still zero obvious signs of blood in my urine, zero indication of kidney stones, and no obvious S/S's (Signs and Symptoms) of other organ issues. Of note however, is that I've had an increase of incidences involving my heart racing, feeling a bit squeezed, or feeling a mildly sharp pain in my heart. I've got my next physicians appointment this coming Wednesday, and I will definitely say something about this.
Lastly, I am tired. All the time tired. My eyes are droopy, my energy non-existent, and feel sleepy most all of every day. Even though my dreams have been better, I still awaken as exhausted as if I'd never slept in the first place.
That's all for today. I'm tired, sleepy, and it's time to go get my daily nap; so stop asking me questions, and let me rest. Gosh!!! ;o)
Good Health to All!
ScottW
I'll start with the headache because this has been the worst. My average daily usage of T3 has been up to about 4.5/day because the headache continues to be at its elevated worst yet. My TMD devices are worthless (as far as these headaches are concerned), and my head has been pounding day and night. Last night, in fact, the headache woke me from my sleep at 415a. Even with using a T3, I was not asleep again until nearly 730a. Tired or rested--at least...rested as I get--the headache is just constantly assaulting me. No fun at all...
The ammonia smell continues to be nasty. It's predominant on my breath, and in my nose. I'm starting to get used to this new intensity of the ammonia, but it still hits me pretty well.
My bilateral (on both sides) flank pain over the kidneys is still going strong. About the only change is that sitting in certain positions sets off a big twinge of sharp pain over either kidney. I'll keep an eye on this new development, and note any further changes.
I've been having unusual pain on my AV fistula, right around the surgery site. I'm trying to determine if I am doing anything to precipitate the pain. I may be bending my arm too much, be pressing on the super vein, or something else. If the pain worsens or becomes more frequent, I'll likely need to call the vascular surgeon for a consult.
My twice daily regimen of meds have been hitting me especially hard this last week. I've gotten nauseated about five minutes after taking my meds without fail. Assuring plenty of liquids, or having food in my stomach; neither one seems to offset this increase in nausea.
And speaking of nausea, this has again been up and down in its daily frequency. I'm not talking nausea from meds. This is referring to the daily nausea caused by the disease. My use of Promethazine has been holding steady at around 4-7 partial doses every week. Additionally, the ill feeling has been up and down, as well. When moderate, the feeling isn't too bad. When it hits me however, it lays me out; and I am the epitome of miserable.
My appetite has seemed to take a turn for the better. I'm still averaging only one meal per day, but the amount of food taken in is better at about 1.5 cups. I'll take that!
There are still zero obvious signs of blood in my urine, zero indication of kidney stones, and no obvious S/S's (Signs and Symptoms) of other organ issues. Of note however, is that I've had an increase of incidences involving my heart racing, feeling a bit squeezed, or feeling a mildly sharp pain in my heart. I've got my next physicians appointment this coming Wednesday, and I will definitely say something about this.
Lastly, I am tired. All the time tired. My eyes are droopy, my energy non-existent, and feel sleepy most all of every day. Even though my dreams have been better, I still awaken as exhausted as if I'd never slept in the first place.
That's all for today. I'm tired, sleepy, and it's time to go get my daily nap; so stop asking me questions, and let me rest. Gosh!!! ;o)
Good Health to All!
ScottW
Newsletter: Know Your Medication Rights
This Newsletter from The Transplant Experience--an educational division of Astellas Pharmaceuticals that benefits pre and post-transplant patients by providing invaluable information about this entire lengthy and confusing transplant process--is the latest free newsletter I have received, and catches me up on all the previous communiques from The Transplant Experience.
"Know Your Medication Rights"
"Know Your Medication Rights"
After a transplant, your doctor selects an immunosuppressant regimen that she thinks is best for you, taking into account your individual medical history. It is not only important that you make a commitment to taking these medications, but that you understand why this commitment is so critical to your long-term transplant health.
Maintaining the Right Balance of Immunosuppression
Many factors can influence how an immunosuppressant is absorbed into your body, including whether you take it with or without food, the type of organ transplant you received, and other conditions you may have.
If the amount of drug in your body is reduced due to a change in how it is absorbed by your body, you may have too little immunosuppression, which can increase the risk of rejection. If absorption is increased, you could have too much drug in your system, increasing the chance for additional side effects.
For these reasons, not following your medication regimen consistently may increase your risk for rejection or cause serious side effects. It is important to understand the different forms of medication and, specifically, what your doctor intends for you to take.
Understanding Brand and Generic Medications
The Food and Drug Administration (FDA) requires brand name drugs and generic drugs to be safe—both are expected to meet the same standards of strength, purity, effectiveness, manufacturing, and quality controls. Generic drugs are considered bioequivalent (which means that the same amount of medicine is absorbed in the body within the same amount of time) based on studies conducted in 24-36 healthy volunteers. The FDA relies on the safety and efficacy studies conducted by the manufacturer of the brand name drug to establish the safety and efficacy of the generic medication.
For some medications, your doctor may want you to take a brand name drugBrand name drugs have costs associated with the discovery, development, and multi-phase clinical testing required to bring a new drug to the market. Generics cost less because generic manufacturers don’t have to repeat extensive clinical trial programs or take on the investment costs of researching and developing a new drug. For other medications, your doctor may want you to take a generic drugA generic drug is a copy of a brand name drug that is the same in dosage, safety, strength, way it is taken, quality, performance, and intended use. Generics have the same active ingredients as their brand counterparts, but may have differences in the inactive ingredients. A generic drug can be approved for marketing once the patent on a brand name drug has expired. Receiving the Medications Intended for You (If your doctor intends for you to take brand name Prograf® (tacrolimus) capsules, contact your transplant team immediately if your capsules look different from those pictured above†) In most cases, pharmacists or pharmacy personnel are not required to tell you or your doctor if they decide to substitute a generic drug for the brand name drug. Retail and mail-order pharmacies in many states are permitted—and are sometimes required—to fill all prescriptions with generic drugs. Automatic substitution of generics for brand names may occur...
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