Hello Everyone!
I trust all is well for each of you, and that you are all moving forward to greater things.
Well, here's my update:
I'm still feeling terrible pretty much all of the time. Along with that I am having more incidents of heartburn; usually in the late evening. I asked a pharmacist to day if I could take something for that. He looked up a few things then told me to consult with my doctor because most OTC heartburn meds (Zantac, Pepcid, Prilosec, etc) are metabolized in the kidneys instead of the liver...not a good thing for me. So, I've got a call in to my doc to find out what I can do because Tums and Emetrol just aren't cutting it.
My head continue to ache constantly. The last few days my number [on the headaches] has gone up from a 3.5 - 4 to a now 5.5 - 6. Going on 11 weeks now without a break.
Because of how I've been feeling I skipped my PT (physical therapy) last week and just made it back today. I can usually go around ten days max before needing the treatment...I went 15 days this time and I ache all over; which only makes my nausea seem worse, and my feeling blah is intensified. I may end up going for another treatment on Friday if I can. I'll know better tomorrow once my treatment has fully kicked in.
All of these things have led me to falling behind on my school work. I need to decide now that I will do better in spite of feeling like I do. As time goes on and things drag on, my ability to continue being strong will be severely tested. Even though I am tired, I know the fight is just getting started and I must find the strength and determination to carry on as best I possibly can. Any prayers on my behalf from my readers would be tremendously appreciated.
I want to thank each of you for continuing to follow my journey. Your encouragements and support are felt every day and treasured more than you know. So when I say "Good Health to All" at each blogs' sign-off, I mean it in every way. Thank You for all you do!
Good Health to All!
ScottW
Wednesday, January 27, 2010
Friday, January 22, 2010
21 Jan. 10
It's been a week since my last update, so I'll get right to it.
For starters, my headache continues. It is now 9+ weeks of this constant headache. Like I stated in my last post, it has come down to a 3.5-4. At least I have that small concession. I do however have a great distance to go before I match my longest headache ever. When my TMD was unmanageable my headaches were measured not in days, but in weeks. My average headache was a 6.5 and lasted 2.5-3 weeks before I'd get a one day break. My longest uninterrupted headache was six months. That's right, I said six months! Luckily, though the duration [of this headache] has been long, the intensity is at least tolerable--except for times such as last week when the intensity jumped dramatically.
Over the past five days I have been feeling off. My stomach has been constantly upset; I can't eat or drink anything without feeling worse for an hour or more afterwards; and I just feel blah like never before. I still get things done, but I have to press myself mentally to get moving. In fact, I missed classes on Tuesday because of feeling like this. I went to my classes today and felt terrible the whole time. I don't yet know what to make of it. Hopefully this is a passing phase due to a slight bug I picked up. Another couple of weeks should be telling.
I have been trying to increase my food intake for a few weeks and I am showing progress. Though I'm still not eating regularly (just because I'm not hungry), when I do eat, I am taking in more food. Overall I am now eating around six cups of food per day (plus water, milk, juice, etc). That's an increase of two cups per day on average. Admittedly this intake is not consistent from day to day, but it's the overall increase I am pleased with.
I'm still cold all of the time. My fleece coat is a seemingly permanent fixture on me throughout the days; and I still am covered with four quilts when I sleep.
I learned a very important piece of information for anyone needing a transplant. A retired Associate Professor from the University of Colorado Denver School of Dentistry told me that any dental work needing to be addressed must be done prior to transplantation of any organ to minimize the chances of untoward secondary infection. So, if you are looking towards transplantation and have abscessed teeth, ulcerous gums, infections of the mouth, etc, these must get taken care of or approval for the transplant is highly unlikely. So, even though I don't personally have many concerns about the health of my teeth or gums, I must still go through the process of having everything looked at once I know that transplant is a real probability.
All my other previously discussed S/S's are still there; still causing discomfort; still being annoying.
That's all for today.
Good Health to All!
ScottW
For starters, my headache continues. It is now 9+ weeks of this constant headache. Like I stated in my last post, it has come down to a 3.5-4. At least I have that small concession. I do however have a great distance to go before I match my longest headache ever. When my TMD was unmanageable my headaches were measured not in days, but in weeks. My average headache was a 6.5 and lasted 2.5-3 weeks before I'd get a one day break. My longest uninterrupted headache was six months. That's right, I said six months! Luckily, though the duration [of this headache] has been long, the intensity is at least tolerable--except for times such as last week when the intensity jumped dramatically.
Over the past five days I have been feeling off. My stomach has been constantly upset; I can't eat or drink anything without feeling worse for an hour or more afterwards; and I just feel blah like never before. I still get things done, but I have to press myself mentally to get moving. In fact, I missed classes on Tuesday because of feeling like this. I went to my classes today and felt terrible the whole time. I don't yet know what to make of it. Hopefully this is a passing phase due to a slight bug I picked up. Another couple of weeks should be telling.
I have been trying to increase my food intake for a few weeks and I am showing progress. Though I'm still not eating regularly (just because I'm not hungry), when I do eat, I am taking in more food. Overall I am now eating around six cups of food per day (plus water, milk, juice, etc). That's an increase of two cups per day on average. Admittedly this intake is not consistent from day to day, but it's the overall increase I am pleased with.
I'm still cold all of the time. My fleece coat is a seemingly permanent fixture on me throughout the days; and I still am covered with four quilts when I sleep.
I learned a very important piece of information for anyone needing a transplant. A retired Associate Professor from the University of Colorado Denver School of Dentistry told me that any dental work needing to be addressed must be done prior to transplantation of any organ to minimize the chances of untoward secondary infection. So, if you are looking towards transplantation and have abscessed teeth, ulcerous gums, infections of the mouth, etc, these must get taken care of or approval for the transplant is highly unlikely. So, even though I don't personally have many concerns about the health of my teeth or gums, I must still go through the process of having everything looked at once I know that transplant is a real probability.
All my other previously discussed S/S's are still there; still causing discomfort; still being annoying.
That's all for today.
Good Health to All!
ScottW
Friday, January 15, 2010
15 Jan. 10
Great news about my headache!
On Wednesday morning my head finally started to calm down. By Wednesday evening, it was back down to the consistent 3.5-4 that it has been over the last 8+ weeks. I'm sleeping better, resting better, and am able to actually concentrate on school. What a relief!!!
I started eating the new diet my doc wants me on. It's expensive, but if it helps delay the inevitable onset of dialysis, well...I'm not going to complain. For all the fish and veggies I am shopping at Costco. The larger purchases mean I won't have to buy as frequently. In the long run the cost per serving is far lower than going to a regular grocery store.
All my other current S/S's are ever-present. C'est La Vie!
That's all I have for today.
Good Health to All!
ScottW
On Wednesday morning my head finally started to calm down. By Wednesday evening, it was back down to the consistent 3.5-4 that it has been over the last 8+ weeks. I'm sleeping better, resting better, and am able to actually concentrate on school. What a relief!!!
I started eating the new diet my doc wants me on. It's expensive, but if it helps delay the inevitable onset of dialysis, well...I'm not going to complain. For all the fish and veggies I am shopping at Costco. The larger purchases mean I won't have to buy as frequently. In the long run the cost per serving is far lower than going to a regular grocery store.
All my other current S/S's are ever-present. C'est La Vie!
That's all I have for today.
Good Health to All!
ScottW
Monday, January 11, 2010
11 Jan. 10
Things have been fairly consistent the past few days.
Aside from my ongoing (and now worsened) headache, the S/S's have been status quo.
-I'm still sitting around the house all bundled up in a 71 degree room.
-I've eaten very little the last three days.
-The 24/7 nausea has eased up a little. At least I am not feeling like vomiting every time I eat anything.
-I'm still [dubiously] maintaining my average daily occurrences of diarrhea. This one I don't expect to change until either I start eating more, or there is some unforeseen positive change in the disease.
Aside from my ongoing (and now worsened) headache, the S/S's have been status quo.
-I'm still sitting around the house all bundled up in a 71 degree room.
-I've eaten very little the last three days.
-The 24/7 nausea has eased up a little. At least I am not feeling like vomiting every time I eat anything.
-I'm still [dubiously] maintaining my average daily occurrences of diarrhea. This one I don't expect to change until either I start eating more, or there is some unforeseen positive change in the disease.
-My headache has suddenly gone from a steady 3-4 to a now painful 8-8.5. It has been like this for three days. All in all, the headache is now 2 months and running.
School started last week. My schedule has thus far proven to be very beneficial in relation to how I'm doing from day to day. It was a good move on my part to create the class schedule I have.
That's all for today. I will (of course) continue to keep you updated.
Good Health to All!
ScottW
Thursday, January 7, 2010
07 Jan. 10
Hello Everyone!
I apologize for not posting this sooner. School started up again, and I am just now having both the time and energy to write.
Over the course of December the disease was static...which is great! Most of my blood work came back little changed from last month. This is definitely good news!
I have lost another five pounds--mostly due to hardly eating. That makes 17 pounds lost since late September.
Other S/S's are still constant such as being cold, nausea 24/7, constant headache, smelling ammonia etc.
Also, my doc wants me to start eating things which will be easier on my kidney's. He gave me a list of recommended foods to avoid; and most of the "bad foods" are things I usually don't eat anyway; so no big deal there. However, I do have to start eating more fresh fruits and veggies, as well as fresh fish. This is because my triglycerides are too high, and my lipids are still out of whack.. Certainly nothing I can't handle, though.
Further, I am to healthily lose another 15 pounds in the next three months. This will simply entail the new diet, as well as beginning to use my bowflex once again, along with trying to increase my walking. The walking and working out won't be so easy though; more food intake IS required. A bit of a quagmire, I know; but I'll start working on it early next week.
And, that's about all for now. Good news pretty much all around. For now, I am to keep an eye on my existing S/S's, note anything new or unusual (and of course call my doc if any major S/S's occur), eat all the proper foods, and keep on moving forward. Not a bad report at all!
Good Health to All!
ScottW
I apologize for not posting this sooner. School started up again, and I am just now having both the time and energy to write.
Over the course of December the disease was static...which is great! Most of my blood work came back little changed from last month. This is definitely good news!
I have lost another five pounds--mostly due to hardly eating. That makes 17 pounds lost since late September.
Other S/S's are still constant such as being cold, nausea 24/7, constant headache, smelling ammonia etc.
Also, my doc wants me to start eating things which will be easier on my kidney's. He gave me a list of recommended foods to avoid; and most of the "bad foods" are things I usually don't eat anyway; so no big deal there. However, I do have to start eating more fresh fruits and veggies, as well as fresh fish. This is because my triglycerides are too high, and my lipids are still out of whack.. Certainly nothing I can't handle, though.
Further, I am to healthily lose another 15 pounds in the next three months. This will simply entail the new diet, as well as beginning to use my bowflex once again, along with trying to increase my walking. The walking and working out won't be so easy though; more food intake IS required. A bit of a quagmire, I know; but I'll start working on it early next week.
And, that's about all for now. Good news pretty much all around. For now, I am to keep an eye on my existing S/S's, note anything new or unusual (and of course call my doc if any major S/S's occur), eat all the proper foods, and keep on moving forward. Not a bad report at all!
Good Health to All!
ScottW
Friday, January 1, 2010
01 Jan. 10
Thought I'd start off our New Year by correcting a small error on my last post.
I had stated that I was experiencing no new S/S's of the PCKD. Well, that was an incorrect statement. I forgot that three times in the last two weeks I've had sudden, intense and very sharp pains on the upper R of my head. These have lasted from a few seconds to nearly a minute.
One of the dangers of this disease is the increased possibility of CVA, or Cerebral Vascular Accident. This is commonly referred to as a stroke. The pathophysiology of a stroke is simply an aneurysm involving one or more blood vessels in or on the brain. Warning signs of impending aneurysms include the onset of TIA's or Trans Ischemic Attacks; often referred to as mini-strokes. They damage the brain without creating debilitating effects common in strokes. One manifestation of a TIA is sudden, sharp pain onset on the head.
Now, don't get me wrong...I am NOT, in any way, saying that I'm having these TIA's, or that an aneurysm is imminent. Only a physician, and medical imaging and other testing can determine the likelihood of such an event.
I am ONLY pointing out that I have experienced three sudden, intense, and very sharp pains in my head. This is very different than normal, so I am noting their occurrence.
Also, the past few days have been pretty rough. Everything I eat or drink causes extreme nausea. Tums, sodium bicarb, ginger ale...nothing works at getting it to settle down. The only thing I have been able to do is preventative. This involves not eating. Since that is absolutely NOT an option, I've been eating, then hang on while I feel like vomiting for a good one to two hours.
My headache continues without a break. Nearly seven weeks now.
I'm still cold all of the time. My appetite is still diminished from the four cups of food per day I had been eating.
School starts this week. I am looking forward to new classes, and to forcing my mind to push myself beyond how I am currently feeling. After all, I've got a goal to attain, and feeling like I do will only get in my way if I let it. Until I no longer have the physical strength, I will continue efforting my education, and my responsibilities.
Again, I've got the next visit with my nephrologist this coming Tuesday (05 Jan). I'll fill you in on what we find.
Good Health to All!
ScottW
I had stated that I was experiencing no new S/S's of the PCKD. Well, that was an incorrect statement. I forgot that three times in the last two weeks I've had sudden, intense and very sharp pains on the upper R of my head. These have lasted from a few seconds to nearly a minute.
One of the dangers of this disease is the increased possibility of CVA, or Cerebral Vascular Accident. This is commonly referred to as a stroke. The pathophysiology of a stroke is simply an aneurysm involving one or more blood vessels in or on the brain. Warning signs of impending aneurysms include the onset of TIA's or Trans Ischemic Attacks; often referred to as mini-strokes. They damage the brain without creating debilitating effects common in strokes. One manifestation of a TIA is sudden, sharp pain onset on the head.
Now, don't get me wrong...I am NOT, in any way, saying that I'm having these TIA's, or that an aneurysm is imminent. Only a physician, and medical imaging and other testing can determine the likelihood of such an event.
I am ONLY pointing out that I have experienced three sudden, intense, and very sharp pains in my head. This is very different than normal, so I am noting their occurrence.
Also, the past few days have been pretty rough. Everything I eat or drink causes extreme nausea. Tums, sodium bicarb, ginger ale...nothing works at getting it to settle down. The only thing I have been able to do is preventative. This involves not eating. Since that is absolutely NOT an option, I've been eating, then hang on while I feel like vomiting for a good one to two hours.
My headache continues without a break. Nearly seven weeks now.
I'm still cold all of the time. My appetite is still diminished from the four cups of food per day I had been eating.
School starts this week. I am looking forward to new classes, and to forcing my mind to push myself beyond how I am currently feeling. After all, I've got a goal to attain, and feeling like I do will only get in my way if I let it. Until I no longer have the physical strength, I will continue efforting my education, and my responsibilities.
Again, I've got the next visit with my nephrologist this coming Tuesday (05 Jan). I'll fill you in on what we find.
Good Health to All!
ScottW
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