Isn't it just typical that as soon as I post on here that I've had a few good days, I end up feeling terrible the very next day?
Well, it happened. Mid-day on Monday I began feeling worse, and by the evening I was feeling awful. I didn't eat anything (aside from liquids) for just about 45 hours (from Sunday pm until Tues pm). I wasn't hungry at all, and even drinking water caused extreme discomfort in my stomach and intestines, and left me feeling incredibly nauseated. A fun couple of days, I must say! :o( I actually ate twice today with minimal side effects. So, an improvement once more.
In the good news dept--I told you I was having a difficult time getting to sleep, and that the sleep I had been getting wasn't very good. Well over this last week, even though I still can't get to sleep early, once I am asleep, I am out for at least seven hours. I'm even waking feeling somewhat rested. I don't know why this has changed, but it is certainly a welcomed change.
That's all I've got for you today. Just wanted to pass on those tidbits.
Good Health to All!
ScottW
Wednesday, March 31, 2010
Sunday, March 28, 2010
28 March 10
Things have actually improved a little.
The increased nausea and discomfort have subsided to a better level (Thank goodness!). About two days ago I noticed that eating wasn't as challenging, and that I was actually eating more than I had been for two weeks.
A small victory to be sure; but a welcomed one!
My headache on the other hand, continues to pound every day...all day. Now almost twenty weeks in duration, I continue trying to get it to stop; but to no avail. My PT doc is mystified about it as well. This past week the pain level has been a constant 6 on my scale.
The ammonia I smell at all times now has instances of being acutely strong; so much so that I actually plug my nose for about a minute just so I don't have to smell the intense odor. This seems to help the intensity ease up. That result is probably just coincidental, but I'll take it any way I can get it.
The weather here continues to warm as Spring sets in. My body still doesn't seem to notice, though. This is one S/S that doesn't vacillate at all. So, I remain cold.
I was looking through the website of the National Kidney Foundation and came across a cookbook designed specifically for dialysis patients and their families. It has all sorts of great info and tons of recipes. I'm going to start using it even though I'm not yet on dialysis simply because healthy, nutritionally dense eating is NEVER a bad thing. You should take a look at the website. The recipe book is under 'Patients--Dialysis--Nutrition, Diet--Living Well on Dialysis: A Cookbook for Patients and their Families.' You can either download individual recipes, or the entire cookbook.
That's all for today. All in all, a fairly upbeat entry.
Good Health to All!
ScottW
Tuesday, March 23, 2010
**Important Article for Potential Donors!
Today the Wall Street Journal carried the following article about potential Kidney Donors. It is a fascinating piece with brand new information from a recently concluded study. Please read it!
The research, conducted at Johns Hopkins University, looked at all 80,347 living kidney donations in the U.S. between 1994 and 2009. Its findings generally support earlier studies involving relatively small numbers of kidney donors at individual transplant centers. Among the latest findings, in the 90 days after surgery, 3.1 of every 10,000 donors died, a mortality rate about eight times higher than non-donors experienced, but still quite low compared to similar procedures. Over the longer term, however, donors died no more often than the control group, based on death data obtained from the Social Security Administration.
There are a number of reasons that potential kidney donors may choose not to go through with the procedure, ranging from concerns about their own well being to financial considerations. Although donors incur no out-of-pocket medical expenses, transplant centers don't cover peripheral costs like travel or lost wages. Some candidates fear they'll face higher insurance premiums if the screening process reveals a health condition, or the surgery creates one.
Perhaps 10% to 20% of candidate donors withdraw for non-medical reasons, estimates Raymond Heilman, a Mayo Clinic nephrologist. The true rate is difficult to determine, as transplant centers closely guard potential donors' privacy. Many transplant centers offer a "medical out," citing a nonexistent condition like high blood pressure, to shield dropouts from familial pressure to donate.
New Finding for Organ Donors
"A major study of kidney donations provides the strongest evidence yet that organ donors live just as long as people who go through life with two kidneys. Medical specialists say they plan to tout the findings in transplant literature to encourage more people to become living donors.
Of the roughly 13,600 kidney transplants performed in the U.S. last year, 6,387 were from living donors, with the balance coming from deceased donors. A living kidney donation extends a recipient's life span by 17 years on average, compared with nine to 11 years when a kidney from a deceased donor is used. More than 84,000 U.S. patients are currently waiting for a kidney transplant.
The study, published this month in the Journal of the American Medical Association, "reconfirms what many of us have suspected, that living donation is a safe process for donors," says Matthew Cooper, director of kidney transplantation at the University of Maryland Medical Center, who wasn't involved in the study.
The study also seems to affirm the resilience of a healthy kidney, whose functions include filtering metabolic waste and regulating blood pressure.
The study, published this month in the Journal of the American Medical Association, "reconfirms what many of us have suspected, that living donation is a safe process for donors," says Matthew Cooper, director of kidney transplantation at the University of Maryland Medical Center, who wasn't involved in the study.
The study also seems to affirm the resilience of a healthy kidney, whose functions include filtering metabolic waste and regulating blood pressure.
When people have two, normally functioning kidneys, neither works at full capacity, past research has shown. After one of the organs is removed, the remaining kidney picks up the slack—it grows 20% to 25% larger and becomes 20% to 30% more efficient over the next six months. "That seems to be more than sufficient in the vast majority of donors," says Bryan Becker, president of the National Kidney Foundation and a nephrologist at the University of Wisconsin.
The research, conducted at Johns Hopkins University, looked at all 80,347 living kidney donations in the U.S. between 1994 and 2009. Its findings generally support earlier studies involving relatively small numbers of kidney donors at individual transplant centers. Among the latest findings, in the 90 days after surgery, 3.1 of every 10,000 donors died, a mortality rate about eight times higher than non-donors experienced, but still quite low compared to similar procedures. Over the longer term, however, donors died no more often than the control group, based on death data obtained from the Social Security Administration.
Though the researchers didn't measure donors' quality of life, smaller studies have found that kidney donation doesn't increase the risk of diabetes, stroke, cancer or heart disease. In fact, donors appear to have lower cholesterol and blood pressure.
For every successful transplant, scores of potential living donors begin the process. Most are immediate family of the recipient. But transplant centers are increasingly accepting non-blood-related donors, such as spouses, close friends and so-called altruistic donors, who offer to donate a kidney with no particular recipient in mind.
Candidates are screened for diabetes, high blood pressure, a history of kidney infections and other factors that would make life perilous with one kidney. An independent counselor ensures that the candidate is psychologically stable and hasn't been coerced into donation. At any point during the process, the candidate can withdraw.
Candidates are screened for diabetes, high blood pressure, a history of kidney infections and other factors that would make life perilous with one kidney. An independent counselor ensures that the candidate is psychologically stable and hasn't been coerced into donation. At any point during the process, the candidate can withdraw.
There are a number of reasons that potential kidney donors may choose not to go through with the procedure, ranging from concerns about their own well being to financial considerations. Although donors incur no out-of-pocket medical expenses, transplant centers don't cover peripheral costs like travel or lost wages. Some candidates fear they'll face higher insurance premiums if the screening process reveals a health condition, or the surgery creates one.
Perhaps 10% to 20% of candidate donors withdraw for non-medical reasons, estimates Raymond Heilman, a Mayo Clinic nephrologist. The true rate is difficult to determine, as transplant centers closely guard potential donors' privacy. Many transplant centers offer a "medical out," citing a nonexistent condition like high blood pressure, to shield dropouts from familial pressure to donate.
Last year, living kidney donations saw their first annual increase in five years, to 6,387 from 5,968 a year earlier, after peaking in 2004 at 6,647. In efforts to make donating a kidney safer, nephrologists are increasingly adopting new procedures such as laparoscopy, an alternative to open kidney surgery. They also are seeking to do more with the existing pool of potential donors. Transplant centers are compiling a national database to help arrange complex swaps between multiple donors and recipients, aimed at finding biological matches more quickly for patients on the waiting list." (By JEREMY SINGER-VINE, WSJ 23 March 10)
Monday, March 22, 2010
22 March 10
Still no relief from how I have been feeling.
Though today is better than it has been, I am by no means feeling great. Wishing I could figure out if this is going to stick around. At 11 days now (and running), this would seem to be the case.
In any event, because of my feeling like this I am not wanting to eat anything as doing so only increases the nausea, discomfort, etc. However, I know that I must eat so I literally am eating even in the midst of feeling lousier with each successive bite. When I eat, it is usually just two small meals per day.
The malaise that accompanies the development of the PKD is starting to show itself. I continue to try hard to stay focused, positive, and forward-looking; but it is getting more difficult. Though I am keeping up with my online courses, my on-campus classes are suffering because I just am not feeling up to getting to class. This of course impacts my ability to get passing grades. I am trying; but I can only do what I can do. I accepted that possibility going into the semester.
My headache marches on into its 19th week. No relief in sight.
My sleep has been really off the past two weeks. Even though I am tired/exhausted most of the time, actually getting to sleep is a definite problem. I have read that insomnia is an issue with many advanced PKD patients, so I really shouldn't be surprised. I don't like it, though!
Also, with the way my stomach has been feeling I have been unable to rest anything on my stomach. Whether its my hands, a plate, a glass, my grand kids...it all increases the discomfort over my upper abdomen. When I sleep , if anything is even pressing a little over my gut it starts to hurt. This also impacts my ability to sleep.
I am seeing a little bit of edema in my feet. It's not much at this point, but it is definitely there. I can normally see ligaments and veins on the top of my feet both day and night. Now, I can't clearly see them even when my feet have been elevated. The edema is an important S/S of the PKD because it tells me that my kidneys are becoming unable to filter all the water out of my body that is needed to. Because of this, peripheral edema evidences as water begins to collect in the feet. (I think I explained that fairly well.)
The other S/S's that I have previously discussed continue as they have.
So, it would seem that the disease is definitely progressing faster than anticipated. If, during my next visit with my doctor, this turns out to be the case, I expect to be scheduled for shunt placement very soon. A fistula (my preferred shunt) must be in place 4-6 months ahead of the start of dialysis. This would mean I could start dialysis anywhere from Aug. to Oct. I'll let you know about this development as soon as I have concrete info [instead of my current speculation].
Good Health to All!
ScottW
Though today is better than it has been, I am by no means feeling great. Wishing I could figure out if this is going to stick around. At 11 days now (and running), this would seem to be the case.
In any event, because of my feeling like this I am not wanting to eat anything as doing so only increases the nausea, discomfort, etc. However, I know that I must eat so I literally am eating even in the midst of feeling lousier with each successive bite. When I eat, it is usually just two small meals per day.
The malaise that accompanies the development of the PKD is starting to show itself. I continue to try hard to stay focused, positive, and forward-looking; but it is getting more difficult. Though I am keeping up with my online courses, my on-campus classes are suffering because I just am not feeling up to getting to class. This of course impacts my ability to get passing grades. I am trying; but I can only do what I can do. I accepted that possibility going into the semester.
My headache marches on into its 19th week. No relief in sight.
My sleep has been really off the past two weeks. Even though I am tired/exhausted most of the time, actually getting to sleep is a definite problem. I have read that insomnia is an issue with many advanced PKD patients, so I really shouldn't be surprised. I don't like it, though!
Also, with the way my stomach has been feeling I have been unable to rest anything on my stomach. Whether its my hands, a plate, a glass, my grand kids...it all increases the discomfort over my upper abdomen. When I sleep , if anything is even pressing a little over my gut it starts to hurt. This also impacts my ability to sleep.
I am seeing a little bit of edema in my feet. It's not much at this point, but it is definitely there. I can normally see ligaments and veins on the top of my feet both day and night. Now, I can't clearly see them even when my feet have been elevated. The edema is an important S/S of the PKD because it tells me that my kidneys are becoming unable to filter all the water out of my body that is needed to. Because of this, peripheral edema evidences as water begins to collect in the feet. (I think I explained that fairly well.)
The other S/S's that I have previously discussed continue as they have.
So, it would seem that the disease is definitely progressing faster than anticipated. If, during my next visit with my doctor, this turns out to be the case, I expect to be scheduled for shunt placement very soon. A fistula (my preferred shunt) must be in place 4-6 months ahead of the start of dialysis. This would mean I could start dialysis anywhere from Aug. to Oct. I'll let you know about this development as soon as I have concrete info [instead of my current speculation].
Good Health to All!
ScottW
Thursday, March 18, 2010
18 March 10
Seven days.
That's how long I have felt like this. Every time I eat, my stomach hurts and I get overly nauseated. The same goes for anything I drink. Additionally, my appetite is nearly gone. In fact, between Friday morning and this evening I have eaten just nine small meals. I'm still hoping that this will pass; but I am prepared if it ends up sticking around.
My headache is now past 18 weeks in duration. Lately it has been averaging a 5 on my scale of 1-10. OTC meds take the edge off only. There is no real relief from the unrelenting pain all over my head.
In spite of the weather warming to the upper 50's, my fleece jacket remains a seemingly permanent fixture of my wardrobe. I just continue to be unable to stay warm.
All the other S/S's march on with no great changes either way.
Good Health to All!
ScottW
That's how long I have felt like this. Every time I eat, my stomach hurts and I get overly nauseated. The same goes for anything I drink. Additionally, my appetite is nearly gone. In fact, between Friday morning and this evening I have eaten just nine small meals. I'm still hoping that this will pass; but I am prepared if it ends up sticking around.
My headache is now past 18 weeks in duration. Lately it has been averaging a 5 on my scale of 1-10. OTC meds take the edge off only. There is no real relief from the unrelenting pain all over my head.
In spite of the weather warming to the upper 50's, my fleece jacket remains a seemingly permanent fixture of my wardrobe. I just continue to be unable to stay warm.
All the other S/S's march on with no great changes either way.
Good Health to All!
ScottW
Thursday, March 11, 2010
11 March 10
A terrible day for me.
My headache worsened today; going from a 5 all the way up to an 8. Not fun!
Also, all day I have felt sick, nearly to the point of throwing up. The Pepcid at least kept that from happening.
Between the headache and my stomach, I have been fairly miserable since I woke up this morning.
This is the first day since I started taking the Pepcid that I have felt this bad. I am hoping this is just a passing thing and that I'll be back to my [now] normal self tomorrow.
In trying to solve my headache, I decided to stop taking my daily multivitamin to see if that might be a contributor. My last dose was Monday, and still no change. So, I think I'll start back up on the vitamin tomorrow.
Am feeling really cold tonight. That is, I'm feeling even colder than usual. No reason...unless it is somehow tied to how my stomach is feeling. I've been wrapped up most of the day in blankets, and still feel cold.
So, as you can see, a set-back today. Not having much fun because of it; but on I go to fight another day.
Good Health to All!
ScottW
My headache worsened today; going from a 5 all the way up to an 8. Not fun!
Also, all day I have felt sick, nearly to the point of throwing up. The Pepcid at least kept that from happening.
Between the headache and my stomach, I have been fairly miserable since I woke up this morning.
This is the first day since I started taking the Pepcid that I have felt this bad. I am hoping this is just a passing thing and that I'll be back to my [now] normal self tomorrow.
In trying to solve my headache, I decided to stop taking my daily multivitamin to see if that might be a contributor. My last dose was Monday, and still no change. So, I think I'll start back up on the vitamin tomorrow.
Am feeling really cold tonight. That is, I'm feeling even colder than usual. No reason...unless it is somehow tied to how my stomach is feeling. I've been wrapped up most of the day in blankets, and still feel cold.
So, as you can see, a set-back today. Not having much fun because of it; but on I go to fight another day.
Good Health to All!
ScottW
Saturday, March 6, 2010
06 March 10
A slight change for the better!
I've been on the Pepcid Complete for over a week now and my appetite is up a little. Though the nausea is by no means gone, I can actually eat now without waves of nausea crashing down upon me. My daily food intake has changed. I am eating fewer times every day; but when I eat, I am taking in at least 3 cups of food at a time.
I still end up nauseated, but [most of the time] it comes on after I'm finished eating (instead of while I'm eating). Plus, I am no longer having the terrible heartburn at night. (YAY!!!!!) So, I'm eating around 6-8 cups of food per day...every day. I'm still nauseated most of every day; but the fact that I'm eating is such great news!
The headache marches on. 16+ weeks now. No relief in sight.
In spite of eating more, I am still having 1-2 bouts of diarrhea every day. I don't know if this has just become a permanent part of my life at this point--am hoping not, but realistically thinking it is. At least, that is, until I have the transplant (sometime in my future).
This past week I have had the smell of ammonia so strong it's as if I have a smelling salt right in front of my nose nearly all the time. Kinda gets in the way of smelling pretty much anything. It's always worse (intensified) when I burp.
That's all my current news. Am looking forward to what will hopefully be a better week.
Good Health to All!
ScottW
I've been on the Pepcid Complete for over a week now and my appetite is up a little. Though the nausea is by no means gone, I can actually eat now without waves of nausea crashing down upon me. My daily food intake has changed. I am eating fewer times every day; but when I eat, I am taking in at least 3 cups of food at a time.
I still end up nauseated, but [most of the time] it comes on after I'm finished eating (instead of while I'm eating). Plus, I am no longer having the terrible heartburn at night. (YAY!!!!!) So, I'm eating around 6-8 cups of food per day...every day. I'm still nauseated most of every day; but the fact that I'm eating is such great news!
The headache marches on. 16+ weeks now. No relief in sight.
In spite of eating more, I am still having 1-2 bouts of diarrhea every day. I don't know if this has just become a permanent part of my life at this point--am hoping not, but realistically thinking it is. At least, that is, until I have the transplant (sometime in my future).
This past week I have had the smell of ammonia so strong it's as if I have a smelling salt right in front of my nose nearly all the time. Kinda gets in the way of smelling pretty much anything. It's always worse (intensified) when I burp.
That's all my current news. Am looking forward to what will hopefully be a better week.
Good Health to All!
ScottW
Tuesday, March 2, 2010
02 March 10
*I found the following on the National Kidney Foundation website (listed below Right down the page under "Helpful Remal Websites.")
Check Out Your Kidneys During National Kidney Month, World Kidney Day
26 million Americans—1 in 9 adults—have chronic kidney disease, and most don’t know it.
In honor of National Kidney Month in March and World Kidney Day on March 11th, the National Kidney Foundation urges everyone to learn the risk factors and get their kidneys checked out. Early detection and treatment, may PREVENT the progression to kidney failure.
*For links to schedule of free screenings, please visit the National Kidney Foundation website as listed further down this blog.
Good Health to All!
ScottW
Check Out Your Kidneys During National Kidney Month, World Kidney Day
26 million Americans—1 in 9 adults—have chronic kidney disease, and most don’t know it.
In honor of National Kidney Month in March and World Kidney Day on March 11th, the National Kidney Foundation urges everyone to learn the risk factors and get their kidneys checked out. Early detection and treatment, may PREVENT the progression to kidney failure.
*For links to schedule of free screenings, please visit the National Kidney Foundation website as listed further down this blog.
Good Health to All!
ScottW
02 March 10
I got the results back from my MRI.
The test came back negative for aneurysms. The next step (in regards to my headaches) is to try to determine just why nothing will work to alleviate the pain. By doing this we might determine the cause of the headaches.
So, the search for answers begins.
Good Health to All!
ScottW
The test came back negative for aneurysms. The next step (in regards to my headaches) is to try to determine just why nothing will work to alleviate the pain. By doing this we might determine the cause of the headaches.
So, the search for answers begins.
Good Health to All!
ScottW
Monday, March 1, 2010
01 March 10
Well, I ended up not having the CT Scan.
I pre-medicated with Prednisone and Benadryl [because I'm allergic to the dye contrast], then went for the test. When I got there, the imaging dept. had some legitimate concerns regarding the use of the dye contrast not only because of my allergy, but due to my level of kidney function as well. I was told that with my kidney 23% function the dye would probably not be able to filter out of my body for a long while, and that it could actually damage what remains of both kidneys. So, after consulting further with my nephrologist, the Imaging doc called off the test and scheduled me for an MRI.
I can already hear some of you out there saying that my doctor should have already known about this probability. My response to that thinking is that even good physicians come across situations that they had not encountered before (or, for a long time). They are continuously learning; just like we all should be as we perform our work duties. My unique allergy, coupled with my percentage of kidney function most likely presented a case that my very good physician had not previously been presented with.
The important thing here--the potential severity of using the dye was averted. No harm done. I remain highly confident in the skill of my doctor.
Anyway, I had the MRI done this past Saturday (27 March). Again, this test was looking for possible aneurysms in or on my brain that might explain the now 15-week headache that refuses to diminish. Additionally, the images will hopefully show other potential causes for the 24/7 pain [in case aneurysms are not found].
So, I am now in waiting mode to hear about the findings. I should know something in the next couple of days.
Speaking of my headaches, my pain level over the weekend increased from a 5 to about a 7. Sleep, acupuncture, relaxation, food intake, tylenol...nothing helps. No treatments or other techniques I have used over the last ten years in managing my TMD is even making a dent. I haven't had headaches like this in ten years--which was before I finally got my TMD under control!
My nausea is better only so long as I take two Pepcid Complete tablets every day. If I miss even one chewable tablet, the nausea comes sweeping back with a vengeance. The Pepcid doesn't entirely remove the nausea, but at least I don't feel like throwing up all day...every day.
Other S/S's persist:
-Feel cold all the time;
-Smelling ammonia;
-Blurred vision;
-Lack of appetite;
-Daily occurrences (1-2x's) of diarrhea,
-etc.
I am doing fairly well at keeping up with classes. My two online courses I can juggle as I am able; so long as I meet the established deadlines. My on-campus courses are doing ok. I'm not doing as well in those as I'd like; but it really is the best I can do at this time. When I say that, I have to put it in perspective for you. You see, I am a 3.80 GPA student. To me, doing well is all A's with an occasional B thrown in. My current grades will probably reflect all B's with maybe one C. Disappointing for me personally; but the grades are "acceptable" considering what I am dealing with.
Anyway, (again) I will let you know the results of my MRI as soon as I know them myself.
Good Health to All!
ScottW
I pre-medicated with Prednisone and Benadryl [because I'm allergic to the dye contrast], then went for the test. When I got there, the imaging dept. had some legitimate concerns regarding the use of the dye contrast not only because of my allergy, but due to my level of kidney function as well. I was told that with my kidney 23% function the dye would probably not be able to filter out of my body for a long while, and that it could actually damage what remains of both kidneys. So, after consulting further with my nephrologist, the Imaging doc called off the test and scheduled me for an MRI.
I can already hear some of you out there saying that my doctor should have already known about this probability. My response to that thinking is that even good physicians come across situations that they had not encountered before (or, for a long time). They are continuously learning; just like we all should be as we perform our work duties. My unique allergy, coupled with my percentage of kidney function most likely presented a case that my very good physician had not previously been presented with.
The important thing here--the potential severity of using the dye was averted. No harm done. I remain highly confident in the skill of my doctor.
Anyway, I had the MRI done this past Saturday (27 March). Again, this test was looking for possible aneurysms in or on my brain that might explain the now 15-week headache that refuses to diminish. Additionally, the images will hopefully show other potential causes for the 24/7 pain [in case aneurysms are not found].
So, I am now in waiting mode to hear about the findings. I should know something in the next couple of days.
Speaking of my headaches, my pain level over the weekend increased from a 5 to about a 7. Sleep, acupuncture, relaxation, food intake, tylenol...nothing helps. No treatments or other techniques I have used over the last ten years in managing my TMD is even making a dent. I haven't had headaches like this in ten years--which was before I finally got my TMD under control!
My nausea is better only so long as I take two Pepcid Complete tablets every day. If I miss even one chewable tablet, the nausea comes sweeping back with a vengeance. The Pepcid doesn't entirely remove the nausea, but at least I don't feel like throwing up all day...every day.
Other S/S's persist:
-Feel cold all the time;
-Smelling ammonia;
-Blurred vision;
-Lack of appetite;
-Daily occurrences (1-2x's) of diarrhea,
-etc.
I am doing fairly well at keeping up with classes. My two online courses I can juggle as I am able; so long as I meet the established deadlines. My on-campus courses are doing ok. I'm not doing as well in those as I'd like; but it really is the best I can do at this time. When I say that, I have to put it in perspective for you. You see, I am a 3.80 GPA student. To me, doing well is all A's with an occasional B thrown in. My current grades will probably reflect all B's with maybe one C. Disappointing for me personally; but the grades are "acceptable" considering what I am dealing with.
Anyway, (again) I will let you know the results of my MRI as soon as I know them myself.
Good Health to All!
ScottW
Subscribe to:
Posts (Atom)
