Alright...
I am going to make this relatively quick tonight because it's D-day, I'm exhausted and achy from head to toe, and I have other things I want to do tomorrow other than writing in my blog. So, here goes...
The last three dialysis results:
8/23
Starting Weight: 104.6 Kg
Water Removed: 1.60 Kg
Ending Weight: 102.8 Kg
8/25
Starting Weight: 104.6 Kg
Water Removed: 1.30 Kg
Ending Weight: 103.3 Kg
8/28
Starting Weight: 104.8 Kg
Water Removed: 1.70 Kg
Ending Weight: 103.1 Kg
As you can see, the average volume of water being removed has dropped to 1.53 Kg, or about 3.37 pounds of water (about 54 oz's total).
I am still experiencing greater mental clarity, and slight energy pickups. The other notable benefit I'm now seeing from dialysis is that my headache, now about 34 months long and counting, has eased off in its intensity. Whereas before dialysis, the headache was averaging a solid 9.75 day and night and I was using about 6.5 T3's per day, right now the headache is averaging a somewhat tolerable 8.5, and my T3 usage has dropped to less than about 3.8 per day. I WILL TAKE THIS VICTORY!!!
Someone might say, 'Well, it's psychosomatic because you expected the headache to go down.' WRONG! I had fully expected the headache to continue at its [then] current level of intensity. To see it decrease is a very pleasant surprise!
My L arm is close to being recovered from the two needle infiltrations. Only slight bruising remains along the length of the arm.
Both dialysis canulation sites are now button holes. The proximal site was just today successfully canulated with a dull button hole needle. This is great news because it means no more poking around! Woo-Hoo! :o)
I have still to get a lidocane-based topical cream for my dialysis arm. I reminded the Davita staff today about getting the Rx done. It was recommended because during both canulations, my arm stings intensely at the sites, and for about ten minutes afterwards. The topical cream will help reduce that sensation.
The remaining BP meds I use continue to control my BP--with the help of the dialysis, of course. Over the last week my BP has averaged 120/78. This means I do not have to take any other BP meds...for now, at least.
That's all I can remember for tonight.
Good Health to All!
ScottW
Wednesday, August 29, 2012
Wednesday, August 22, 2012
22 August 2012
We are still trying to establish my "dry weight" during dialysis.
What exactly is Dry Weight? (From the Davita Dialysis site)
"Dry weight is your weight without the excess fluid that builds up between dialysis treatments. This weight is similar to what a person with normal kidney function would weigh after urinating. It is the lowest weight you can safely reach after dialysis without developing symptoms of low blood pressure such as cramping, which can occur when too much fluid is removed."
For me, part of the difficulty in finding my dry weight is that I am still producing a significant amount of urine. True, my urinary output cannot compensate for all of the fluids I drink--hence the edema. However, it is also throwing a kink into finding my dry weight. This is basically why I continue to have cramps and feel lousy after treatment.
Right now we are looking at 103 kg's as my dry weight. Anytime we take of more than that level, I feel worse than ever. It basically ruins my off days. However, even at 103.5 kg's I have been both ok, and not. It's an ongoing process.
My dialysis continue without further infiltration issues. The bruises I incurred are still visible from high on the L bicep to my wrist. They are slowly dissipating, though.
The following are my last three dialysis treatment results:
8/16
Starting Weight: 105.7 Kg
Fluid Removed: 2.90 Kg
Ending Weight: 102.6 Kg
8/18
Starting Weight: 105.5 Kg
Fluid Removed: 2.90 Kg
Ending Weight: 102.6 Kg
8/21
Starting Weight: 105.5 Kg
Fluid Removed: 2.10 Kg
Ending Weight: 103.4 Kg
As the numbers above define, I am consistently retaining about 2.63 Kg's of water between treatments. This equates to 5.72 pounds of fluid; or, just under three liters. Remember, this is in spite of continuing to urinate. If you'll recall the photos of my legs and feet pre-dialysis, then the severe edema really makes sense.
The button hole for the distal canulation site has been established for several treatments now. We are using a blunt needle into the site. For the proximal canulation site we are still using a sharp needle. A few more successful needle punctures should be enough to establish the second button hole.
Between treatments my appetite has been about the same. I am snacking very little now, and eat dinner, and maybe a lunch--depending on how I feel. Overall, I estimate my daily food intake to average about two and a half cups. That is significantly better than before dialysis! Though I am not yet gaining weight, I am no longer losing it by the day.
I forgot what else I wanted to say so, I'll wrap it up.
I've got an off day in the morning; maybe I'll feel good enough to actually do something. Hmmm....
Good Health to All!
ScottW
Saturday, August 18, 2012
18 August 2012
To start off today, I have a piece of news...
Like clockwork my dialysis goes every Tues, Thurs and Sat. This doesn't vary. What also hasn't varied has been the head to toe body aches accompanied by extreme muscle fatigue and near cramping of most major muscle groups. This is all caused by taking off water from my body, putting it into a state of un-equilibrium. The muscles react by cramping , and fatigue is a natural byproduct of this process. As a result of this, I am still useless on my off days. I have been told that feeling like this will ease up...which would be awesome!
Life in general has been slower than even I had grown accustomed to. Again, this is merely the result of dialysis. This is how most of my days are now going...
On dialysis days I am up at 500a. Dialysis begins at 545a and goes until about 1010a. After leaving I must eat, so my wife drives me to whatever food sounds good that day, then we drive home. I immediately lay down and am then dead asleep within a few minutes.
I then sleep for anywhere between four to six and a half hours. On waking I am groggy and weak. This feeling persists until around 930p when my brain begins to clear up a bit. In spite of the sleep earlier, I am still able to get back to sleep by twelve AM, or so and sleep another nine or ten hours.
On waking, I am again groggy, weak and fatigued. This persists for about three hours at which time the grogginess decreases leaving me only weak and fatigued. It is at that point that I get housework done, or I work on my personal projects.
By 330p I am usually sleepy and end up taking a nap wherever I am sitting for at least an hour. Most days I get two or three hours of sleep in the early evening. By 1230a I am usually ready for bed, preparing to be up at five for my next round of dialysis.
Sounds like a load of fun, doesn't it? :-)
On my off days I usually have to choose how I will expend what energy and creativity I have. Lately, I have been choosing my personal projects while hoping to have extra strength to write my blog. So far, this approach has not yielded successful results for getting my blog done. So, I decided this morning to write on my blog while I am on dialysis. Aside from multiple problems using my tablet on the blog site I have done ok.
That's about everything I have for today. I know there were several things I wanted to discuss, but in dealing with this app on my tablet, my frustration has pushed those things out of my mind. So, I will wrap this up with a quick sign off before I have any other issues.
I will try to be better with future entries--from my desktop computer! ;-)
Good Health to All!
ScottW
I received a phone call yesterday from the IHC Transplant Coordinator's office. They wanted to set up a time for my Transplant Evaluation Appointment--the first official step on the road to transplant. This appt will involved a number of tests, xrays and interviews that will determine my viability as a good transplant candidate. The date of this eval is on Wed. Sept. 12th from 900a-330p. I will tell you all about it...
I know that I have been lax in getting regular entries done; and for that I certainly apologize. My only excuse is mental and physical exhaustion. Let me explain...
Like clockwork my dialysis goes every Tues, Thurs and Sat. This doesn't vary. What also hasn't varied has been the head to toe body aches accompanied by extreme muscle fatigue and near cramping of most major muscle groups. This is all caused by taking off water from my body, putting it into a state of un-equilibrium. The muscles react by cramping , and fatigue is a natural byproduct of this process. As a result of this, I am still useless on my off days. I have been told that feeling like this will ease up...which would be awesome!
Life in general has been slower than even I had grown accustomed to. Again, this is merely the result of dialysis. This is how most of my days are now going...
On dialysis days I am up at 500a. Dialysis begins at 545a and goes until about 1010a. After leaving I must eat, so my wife drives me to whatever food sounds good that day, then we drive home. I immediately lay down and am then dead asleep within a few minutes.
I then sleep for anywhere between four to six and a half hours. On waking I am groggy and weak. This feeling persists until around 930p when my brain begins to clear up a bit. In spite of the sleep earlier, I am still able to get back to sleep by twelve AM, or so and sleep another nine or ten hours.
On waking, I am again groggy, weak and fatigued. This persists for about three hours at which time the grogginess decreases leaving me only weak and fatigued. It is at that point that I get housework done, or I work on my personal projects.
By 330p I am usually sleepy and end up taking a nap wherever I am sitting for at least an hour. Most days I get two or three hours of sleep in the early evening. By 1230a I am usually ready for bed, preparing to be up at five for my next round of dialysis.
Sounds like a load of fun, doesn't it? :-)
On my off days I usually have to choose how I will expend what energy and creativity I have. Lately, I have been choosing my personal projects while hoping to have extra strength to write my blog. So far, this approach has not yielded successful results for getting my blog done. So, I decided this morning to write on my blog while I am on dialysis. Aside from multiple problems using my tablet on the blog site I have done ok.
That's about everything I have for today. I know there were several things I wanted to discuss, but in dealing with this app on my tablet, my frustration has pushed those things out of my mind. So, I will wrap this up with a quick sign off before I have any other issues.
I will try to be better with future entries--from my desktop computer! ;-)
Good Health to All!
ScottW
Monday, August 13, 2012
A Bit of Good News, For Once
I literally just got back from seeing my nephrologist for the one month post-dialysis-startup visit. My BP was so good (and has been since going on dialysis) that I get to discontinue two meds...
Minoxidil and Sodium Bicarbonate.
Between the two, that is a total of eleven less pills every day that I have to ingest (or, 77 fewer pills per week!). I love this news!
I have already removed the meds from my pill box compartments. So now, my daily meds are as follows:
AM- Zantac (1); Atenolol (1); Gemfibrozil (1); Multivitamin (1).
PM- Zantac (1); Atenolol (1.5).
Combined with the other meds I've already been able to drop (Zemplar, Bumex), I am now taking a total of 87 less pills per week! Wow.
That's it...for now. You'll find no complaints coming from me on this latest news!
Good Health to All!
ScottW
Friday, August 10, 2012
10 August 2012
Well, I am clear headed...somewhat...so I thought I would try and update things.
Dialysis is going well, I guess.
So far we have removed and average of about 2.25 kg's of water per session. Some of that was retained prior to the session, and some of that is what is still being released by my body.
My fistula arm continues to heal. Here are two of the latest pics of my L lower arm:
As you can see, the bruising has become more obvious and colorful. What you don't see in these pics is that the bruising is almost entirely around the arm; and, it is really tender to any touch. For now, I am getting lidocane injections prior to both canulations for dialysis. Plus, I cannot leave my arm in one position for long because of the pain of resting it in any one position. The good thing is, that the arm has begun to heal.
I know it doesn't appear that way, but the infiltration areas are no longer hard, and the overall tenderness of the lower arm has reduced somewhat. Let's hope I don't have another infiltration anytime soon; I don't think my arm could take it.
On the subject of dialysis, the distal (lower on the arm) button hole has been established. The proximal (higher on the arm) button hole has not. That's the one we're having so many issues with. We had a nice stick today, and the heading of the needle was marked with a pen. Hopefully, we'll be using the same on from now on.
Also on the subject of dialysis, I want to try to remember to note the total Kg's of fluid removed every session. This will be a work in progress as I never know how I will be feeling from day to day. Let's start with today...
8/10/12
-Starting Weight: 106.2 Kg's
-Fluid Removed: 3.4 Kg's.
-End Weight: 102.8 Kg's.
*For those of you who may not know, 1 Kg = 2.20 Lbs. So, 100 Kg = 220 Lbs.
On the days when a lot of water is removed (like today), my body has a hard time. Lots of aching throughout my body all day, and lots of near cramping in most muscle groups. I feel completely wiped out, both mentally and physically. My post-dialysis naps are averaging a solid five hours. In spite of that much sleep, I am still going back to sleep by about 1230a, and getting another seven to eight hours at night.
One of the great things happening with dialysis so far is the lowering of my blood pressure. Today, my end session standing BP was 101/72.
I have an appointment with my nephrologist on Monday and am hoping to get rid of another med. That would make three meds...assuming I can do so. The Bumex (diuretic) is gone, as is the Zemplar
(for the parathyroid hormone levels). I will certainly let you know.
I have an ultrasound tomorrow to check on how my kidneys are looking. With my blateral flank pain worse than ever, my doc wants to see how the cysts look. If needed, we will have any abnormally large cysts drained with a needle puncture and syringe. The smaller cysts should drain via the dialysis treatments. If the kidneys continue to cause issues, when transplant time comes, both kidneys will likely be removed [rather than leaving them in place].
That's all I can remember today. I have lots of info coming at me; but with being as exhausted as I am, remembering things doesn't always happen. I will try to do better with my entries so that you get all of this vital information and personal impressions.
Good Health to All!
ScottW
Dialysis is going well, I guess.
So far we have removed and average of about 2.25 kg's of water per session. Some of that was retained prior to the session, and some of that is what is still being released by my body.
My fistula arm continues to heal. Here are two of the latest pics of my L lower arm:
(Today, 10 Aug. 2012 following dialysis)
(09 Aug 2012)
As you can see, the bruising has become more obvious and colorful. What you don't see in these pics is that the bruising is almost entirely around the arm; and, it is really tender to any touch. For now, I am getting lidocane injections prior to both canulations for dialysis. Plus, I cannot leave my arm in one position for long because of the pain of resting it in any one position. The good thing is, that the arm has begun to heal.
I know it doesn't appear that way, but the infiltration areas are no longer hard, and the overall tenderness of the lower arm has reduced somewhat. Let's hope I don't have another infiltration anytime soon; I don't think my arm could take it.
On the subject of dialysis, the distal (lower on the arm) button hole has been established. The proximal (higher on the arm) button hole has not. That's the one we're having so many issues with. We had a nice stick today, and the heading of the needle was marked with a pen. Hopefully, we'll be using the same on from now on.
Also on the subject of dialysis, I want to try to remember to note the total Kg's of fluid removed every session. This will be a work in progress as I never know how I will be feeling from day to day. Let's start with today...
8/10/12
-Starting Weight: 106.2 Kg's
-Fluid Removed: 3.4 Kg's.
-End Weight: 102.8 Kg's.
*For those of you who may not know, 1 Kg = 2.20 Lbs. So, 100 Kg = 220 Lbs.
On the days when a lot of water is removed (like today), my body has a hard time. Lots of aching throughout my body all day, and lots of near cramping in most muscle groups. I feel completely wiped out, both mentally and physically. My post-dialysis naps are averaging a solid five hours. In spite of that much sleep, I am still going back to sleep by about 1230a, and getting another seven to eight hours at night.
One of the great things happening with dialysis so far is the lowering of my blood pressure. Today, my end session standing BP was 101/72.
I have an appointment with my nephrologist on Monday and am hoping to get rid of another med. That would make three meds...assuming I can do so. The Bumex (diuretic) is gone, as is the Zemplar
(for the parathyroid hormone levels). I will certainly let you know.
I have an ultrasound tomorrow to check on how my kidneys are looking. With my blateral flank pain worse than ever, my doc wants to see how the cysts look. If needed, we will have any abnormally large cysts drained with a needle puncture and syringe. The smaller cysts should drain via the dialysis treatments. If the kidneys continue to cause issues, when transplant time comes, both kidneys will likely be removed [rather than leaving them in place].
That's all I can remember today. I have lots of info coming at me; but with being as exhausted as I am, remembering things doesn't always happen. I will try to do better with my entries so that you get all of this vital information and personal impressions.
Good Health to All!
ScottW
Friday, August 3, 2012
Ugly!
This is the result of now two needle infiltrations of my fistula during dialysis...
And just in case you are wondering, Yes, it hurts as bad as it looks!
This latest infiltration happened during yesterday's treatment. I moved my arm slightly to try and adjust my blanket and felt the needle go right through the fistula wall. I immediately told a nurse who then proceeded to attempt to re-place the canulation properly, but without success. She consulted the charge nurse, and it was decided to discontinue the dialysis and give my arm a break.
Total time of dialysis yesterday was 2.5 hours (out of 4.0). Of the 2.5 kg's of water weight we set out to take, we got a total of 1.5 kg's. With another session of dialysis tomorrow, I am not looking forward to the canulations of either needle. :o(
In the mean time, I have been keeping ice on it, and moving it as much as I can stand before the pain is too great.
The contusion goes from above my elbow all the way to my fingers, and affects the entire lower arm wither either the bruising, or edema from the infiltrations. Bending the arm is painful, as is lifting and holding anything. Resting anything against the arm is also out of the question.
If this should happen to you, notify your nurse immediately! The longer you wait, the greater the damage to the arm. So if you think that you should be courageous rather than say something, you'd better think again and call for a nurse immediately!
Good Health to All!
ScottW
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