It's now been twelve days since my last entry on how things are going day to day, so I thought I'd take the time and get you caught up.
Like usual, I'll begin with my dialysis weight changes:
08 October
Starting Weight: 105.5 Kg
Water removed: 2.90 Kg
Ending Weight: 102.6 Kg
11 October
Starting Weight: 103.7 Kg
Water Removed: 0.50 Kg
Ending Weight: 103.2 Kg
13 October
Starting Weight: 104.6 Kg
Water Removed: 0.90 Kg
Ending Weight: 103.7 Kg
16 October
Starting Weight: 105.6 Kg
Water Removed: 1.90 Kg
Ending Weight: 103.7 Kg
18 October
Starting Weight: 106.4 Kg
Water Removed: 3.20 Kg
Ending Weight: 103.2 Kg
Overall my weight is staying fairly consistent; which is good. My legs are doing well with the dialysis so long as we don't take too much water, or I don't walk much following the treatment. If either happens, then both legs cramp as do the feet and toes making sleep nearly impossible--I found that one out the hard way. :o(
The headache, though ever present, continues to be reduced on my off days, then severe on d-days. I just remember what my neurologist said...that the fluid shift that happens during dialysis can cause a bad headache. No matter what though, I'll take the reduced headache; now at 35 months and counting.
My appetite has been swinging around going from poor to famished. Dialysis days find me feeling like I haven't eaten in days. My off days find me barely snacking during the day, and eating only a moderate dinner. I am trying to balance that out by eating roughly the same amount both days...but no luck accomplishing that just yet.
My sleep has been better. I had been having dreams again involving loss of control; but this time I was able to wake myself out of the dreams. Unfortunately, I was unable to get back to sleep, causing greater sleepiness than usual. This went on for about two weeks, but a week ago I was finally able to assert my conscious will onto my subconscious and I regained control of my dreams. Until I have the transplant, I believe this will be an ongoing struggle as my brain works through the stress and uncertainty of everything.
My weekly labs have been showing consistent numbers. Here they are for the last two weeks:
09 October: 16 October:
*Albumin 4.6 g/dL 4.4 g/dL
*Hemoglobin 11.9 g/dL 11.9 g/dL
*Calcium Corrected 9.8 mg/dL 9.8 mg/dL
*Phosphorous 4.2 mg/dL 4.2 mg/dL
*PTH Intact 101 pg/mL 116 pg/mL
*K+ (Potassium) 4.3 mEq/mL 4.2 mEq/mL
*URR (Dialysis effectiveness) 72% 72 %
With my Hemoglobin staying low I continue to receive Iron injections [through the return tubing] during dialysis. As of yesterdays Tx, I have had twelve Iron infusions in a row.
My energy level continues to be marginal, at best. I still use up what energy I have doing housework and maybe...a personal project, too. Today, I am writing this post for my "extra" thing. After this I get to go make dinner, and then my energy will be gone.
The characteristics of my urine are pretty consistent. Low foaminess--a great thing!--lighter color, and a consistent flow. About the only variation to this is when I awaken after a night of sleep. The urine is always darker then...don't ask me why, it just is.
The bilateral flank pain is constantly present, constantly painful. Moving around a little helps this to be tolerable. During dialysis, when I can't get up and move around, the pain gets to be quite nasty. I'd take something for it, but the med would just get filtered out leaving me in as much pain as before. I am already sitting up during the whole Tx every day, so there isn't anything to be done but wait for the Tx to finish so I can take a med for it...and for the headache.
That's all I can remember for today. I am again forgetting something I wanted to tell you about. Ah well. C'est La Vie.
Good Health to All!
ScottW
Friday, October 19, 2012
Thursday, October 11, 2012
10 October 2012
My appointment yesterday went extremely well.
The class, a further education about transplant, meds, the psychology of it, etc was great information; although, with all the studying I have done, there weren't any points brought up that I did not already know about. I also had to sign more paperwork--mostly policies and understandings--which was no big deal. I also got to a brief meet with Mayra, my Transplant coordinator.
I had to leave the class part a bit early because of the scheduled Thallium Cardiac Stress test. Having never been through one of these I did not know what exactly to expect. The cardiac nurses however, made the experience quite comfortable and extremely informative.
To start--well, after the usual insurance stuff--I was taken to an exam room where all the vitals were taken and an IV was placed in my R forearm. A bit of nuclear isotopes were injected through the IV and I was taken to an imaging room and placed on a new scanner that better images the heart with improved thoroughness 360 degrees. I had to hold still for seventeen minutes.
Once completed, I was asked to change into shorts (no shirt) and was hooked up to a 12-Lead ECG. They took a look on this--which, by the way, looked great! My QRS and P-Wave look awesome!-- then placed me on a slow treadmill for three minutes.
After one minute I was injected with a vasodilator that impacts the muscles, as well. My legs suddenly got very heavy, and my breathing was labored. This lasted the remaining two minutes of treadmill time. (All this while I was still hooked up to the ECG 12-Lead).
Once the treadmill was completed, the 12-Leads were removed (All except three), and I was given about ten minutes to recover from the test. The vasodilator was short-acting, and I was given the choice of several drinks and snacks to help my body recover.
Next, I was given another small dose of isotopes and then placed back of the imager I had laid on earlier. This time I was on it for fourteen minutes. Once done, I got dressed and was escorted to another exam room to wait for a cardiologist to talk to me about the results.
When he came in, the cardiologist explained what the test entailed, what they were looking for, etc. He told me, "For a man of your age, your heart is in GREAT shape." There is no plaque buildup anywhere on or in the vessels of the heart, the electrical conduction system of my heart is in excellent shape, and I have zero issues with any of the valves. So, I got a very clean bill of health from the cardiologist! (EXCELLENT news!!!)
Then this afternoon, I received a call from Mayra, and she stated that because my heart looks so good, the Transplant Physician Director, a Dr. Stimson, said that would need "no further cardiac tests of any kind."
So, a great day of news! I now have only two more requisites to do, plus the double nephrectomy, and I will be ready for transplant! Woo-Hoo!!! :o)
(I will let you know about the other requisites as I get them finished!)
Good Health to All!
ScottW
The class, a further education about transplant, meds, the psychology of it, etc was great information; although, with all the studying I have done, there weren't any points brought up that I did not already know about. I also had to sign more paperwork--mostly policies and understandings--which was no big deal. I also got to a brief meet with Mayra, my Transplant coordinator.
I had to leave the class part a bit early because of the scheduled Thallium Cardiac Stress test. Having never been through one of these I did not know what exactly to expect. The cardiac nurses however, made the experience quite comfortable and extremely informative.
To start--well, after the usual insurance stuff--I was taken to an exam room where all the vitals were taken and an IV was placed in my R forearm. A bit of nuclear isotopes were injected through the IV and I was taken to an imaging room and placed on a new scanner that better images the heart with improved thoroughness 360 degrees. I had to hold still for seventeen minutes.
Once completed, I was asked to change into shorts (no shirt) and was hooked up to a 12-Lead ECG. They took a look on this--which, by the way, looked great! My QRS and P-Wave look awesome!-- then placed me on a slow treadmill for three minutes.
After one minute I was injected with a vasodilator that impacts the muscles, as well. My legs suddenly got very heavy, and my breathing was labored. This lasted the remaining two minutes of treadmill time. (All this while I was still hooked up to the ECG 12-Lead).
Once the treadmill was completed, the 12-Leads were removed (All except three), and I was given about ten minutes to recover from the test. The vasodilator was short-acting, and I was given the choice of several drinks and snacks to help my body recover.
Next, I was given another small dose of isotopes and then placed back of the imager I had laid on earlier. This time I was on it for fourteen minutes. Once done, I got dressed and was escorted to another exam room to wait for a cardiologist to talk to me about the results.
When he came in, the cardiologist explained what the test entailed, what they were looking for, etc. He told me, "For a man of your age, your heart is in GREAT shape." There is no plaque buildup anywhere on or in the vessels of the heart, the electrical conduction system of my heart is in excellent shape, and I have zero issues with any of the valves. So, I got a very clean bill of health from the cardiologist! (EXCELLENT news!!!)
Then this afternoon, I received a call from Mayra, and she stated that because my heart looks so good, the Transplant Physician Director, a Dr. Stimson, said that would need "no further cardiac tests of any kind."
So, a great day of news! I now have only two more requisites to do, plus the double nephrectomy, and I will be ready for transplant! Woo-Hoo!!! :o)
(I will let you know about the other requisites as I get them finished!)
Good Health to All!
ScottW
Monday, October 8, 2012
07 October 2012
Things are going alright. Good days, bad days, and a lot of in-between days.
Weight Changes:
29 Sept 2012
Starting Weight: 105.2 Kg
Water Removed: 2.20 Kg
Ending Weight: 103.0 Kg
02 Oct 2012
Starting Weight: 105.7 Kg
Water Removed: 2.00 Kg
Ending Weight: 103.7 Kg
04 Oct 2012
Starting Weight: 106.4 Kg
Water Removed: 3.20 Kg
Ending Weight: 103.2 Kg
06 Oct 2012
Starting Weight: 105.2 Kg
Water Removed: 2.10 Kg
Ending Weight: 103.1 Kg
My weight remains in the same range all around. However, we can't hit my dry weight target. No one at the dialysis center has been able to hit it. I'm thinking of offering a giant chocolate bar to the first nurse or tech who can hit 103.5 kg's. That would make it fun for everyone!
Also, I finally just paid for that Lidocaine Cream after my Medicare turned down the coverage twice. I might still get a refund; but it doesn't matter because the stuff works! As instructed I apply it one hour before Tx (Treatment) and wrap the arm in cellophane. I apply about a dime's thickness on the fistula from an inch (or so) below the distal button hole to an inch (or so) above the proximal button hole, and about a half inch on eather side.
I am pleased to report that the canulation pain is reduced a good 90%, and, the stinging inside the fistula [after canulation] is completely gone! What a relief!!!
My appetite has been down this past week. I have also been feeling off most of the week, too. Plus, I have had really loose stools for nearly a week, as well. I figure that my body is going through one of those times that it is purging the intestines again. Assuming that is the case, my bowels should be settling down any day.
The headache, though ever present, is better...much better. All three off days last week were T3 free!
I did use regular Tylenol (2/500 mgs); but the headache has taken a major hit as far as overall pain level! On dialysis days the headache continues to spike; but even then I am taking two less doses (on average) on D-day than even a month ago. Today was an exception to this success. Because of trying to eat little in hopes of settling my intestines, the headache spiked again. However, I have 100% certainty that if I were feeling better, I would have had another T3 free day!
I had an appointment with the Neurologist this past Friday, told him the news about the headache, and he was so pleased that, in conjunction with my [recent] clean Cranial MRI, that the doc gave me neurological clearance! Yay!!! He is 100% certain that the headache is only associated with the onset of the S/S's of the kidney disease. He also stated that the fluid shift that occurs during dialysis commonly causes a headache; which explains the spike in pain during the Tx. GREAT news!!!
On a side note of great news, it seems that the effects of the now discontinued Minoxidil are finally wearing off...Thank Goodness! My knuckles no longer look like I'm a neanderthal, the hair on my head no longer sprouts like a weed patch in spring, and I am returning to my proud heritage of having very little chest or back hair. :o) (Hey! When you don't have much body hair your entire life, suddenly having a lot is maddening, to put it mildly!)
I am doing dialysis a day early to start the week. My Tx is scheduled for 4p Monday because I have to go up to the Murray, UT IHC Campus on Tuesday morning for two scheduled transplant requisites. I have the Transplant Education class at 0945a. This will last a couple of hours. I will let you know what it is all about.
Then at 1245p I have a Cardiac Thallium Stress Test. This test is simply to assure that I am having zero cardiac issues. Again, I will let you know about it.
I am also working on getting the Dental Exam/Clearance set up; which will just leave the colonoscopy to do, and I will be done with the Transplant requisites. After that, I need the double nephrectomy, and then, a living donor. We're getting there!
That's it for now! Have a great week.
I will write again to tell you about the Tuesday class/test.
Good Health to All!
ScottW
Weight Changes:
29 Sept 2012
Starting Weight: 105.2 Kg
Water Removed: 2.20 Kg
Ending Weight: 103.0 Kg
02 Oct 2012
Starting Weight: 105.7 Kg
Water Removed: 2.00 Kg
Ending Weight: 103.7 Kg
04 Oct 2012
Starting Weight: 106.4 Kg
Water Removed: 3.20 Kg
Ending Weight: 103.2 Kg
06 Oct 2012
Starting Weight: 105.2 Kg
Water Removed: 2.10 Kg
Ending Weight: 103.1 Kg
My weight remains in the same range all around. However, we can't hit my dry weight target. No one at the dialysis center has been able to hit it. I'm thinking of offering a giant chocolate bar to the first nurse or tech who can hit 103.5 kg's. That would make it fun for everyone!
Also, I finally just paid for that Lidocaine Cream after my Medicare turned down the coverage twice. I might still get a refund; but it doesn't matter because the stuff works! As instructed I apply it one hour before Tx (Treatment) and wrap the arm in cellophane. I apply about a dime's thickness on the fistula from an inch (or so) below the distal button hole to an inch (or so) above the proximal button hole, and about a half inch on eather side.
I am pleased to report that the canulation pain is reduced a good 90%, and, the stinging inside the fistula [after canulation] is completely gone! What a relief!!!
My appetite has been down this past week. I have also been feeling off most of the week, too. Plus, I have had really loose stools for nearly a week, as well. I figure that my body is going through one of those times that it is purging the intestines again. Assuming that is the case, my bowels should be settling down any day.
The headache, though ever present, is better...much better. All three off days last week were T3 free!
I did use regular Tylenol (2/500 mgs); but the headache has taken a major hit as far as overall pain level! On dialysis days the headache continues to spike; but even then I am taking two less doses (on average) on D-day than even a month ago. Today was an exception to this success. Because of trying to eat little in hopes of settling my intestines, the headache spiked again. However, I have 100% certainty that if I were feeling better, I would have had another T3 free day!
I had an appointment with the Neurologist this past Friday, told him the news about the headache, and he was so pleased that, in conjunction with my [recent] clean Cranial MRI, that the doc gave me neurological clearance! Yay!!! He is 100% certain that the headache is only associated with the onset of the S/S's of the kidney disease. He also stated that the fluid shift that occurs during dialysis commonly causes a headache; which explains the spike in pain during the Tx. GREAT news!!!
On a side note of great news, it seems that the effects of the now discontinued Minoxidil are finally wearing off...Thank Goodness! My knuckles no longer look like I'm a neanderthal, the hair on my head no longer sprouts like a weed patch in spring, and I am returning to my proud heritage of having very little chest or back hair. :o) (Hey! When you don't have much body hair your entire life, suddenly having a lot is maddening, to put it mildly!)
I am doing dialysis a day early to start the week. My Tx is scheduled for 4p Monday because I have to go up to the Murray, UT IHC Campus on Tuesday morning for two scheduled transplant requisites. I have the Transplant Education class at 0945a. This will last a couple of hours. I will let you know what it is all about.
Then at 1245p I have a Cardiac Thallium Stress Test. This test is simply to assure that I am having zero cardiac issues. Again, I will let you know about it.
I am also working on getting the Dental Exam/Clearance set up; which will just leave the colonoscopy to do, and I will be done with the Transplant requisites. After that, I need the double nephrectomy, and then, a living donor. We're getting there!
That's it for now! Have a great week.
I will write again to tell you about the Tuesday class/test.
Good Health to All!
ScottW
Wednesday, October 3, 2012
Newsletter: Sharing Their Gift of Life
The following is the latest newsletter from The Transplant Experience, the educational arm of Astellas Pharmaceuticals that is intended to teach transplant patients (and their families) about the confusing--and very complex--world or vital organ transplant. This is a free newsletter available to any pre or post-transplant patient.
Just visit www.TransplantExperience.com to sign up, or for more information.
For me, The Transplant Experience has been an invaluable tool for understanding the things I am going through, as well as those coming up in my personal transplant experience.
I have no doubt that this site has been of tremendous value to other patients, too!
Sharing Their Gift of Life
Just visit www.TransplantExperience.com to sign up, or for more information.
For me, The Transplant Experience has been an invaluable tool for understanding the things I am going through, as well as those coming up in my personal transplant experience.
I have no doubt that this site has been of tremendous value to other patients, too!
Sharing Their Gift of Life
Sometimes, learning about another person’s experiences can offer helpful insight into your own. The Transplant Experience Ambassador Program enables you to do just that—to hear how individuals, like you, have worked to overcome the challenges of transplantation and continue to make the most of their gift of life.
What is the Transplant Experience Ambassador Program?
The Transplant Experience Ambassador Program offers a unique connection to the transplant community as an informational—and inspirational—resource for anyone touched by transplantation. Through this program, a liver, kidney or heart transplant recipient shares his or her journey in an effort to help you learn about the transplant process; ways to be proactive about your health; and how to take advantage of your resources, including the Transplant Experience program.
What is covered in an Ambassador presentation?
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Life before transplant
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Life after transplant
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Life today
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Transplant Experience resources for each stage of your transplant journey
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Questions/comments
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Who are the Transplant Experience Ambassadors?
They are transplant recipients from all walks of life, inspired to share their experiences and the lessons learned on their remarkable journeys through transplantation. Meet the current Transplant Experience Ambassadors below:
 How can I attend an Ambassador presentation?
If you'd like to learn more about transplantation through the unique perspective of a Transplant Experience Ambassador—or just have questions about the program—be sure to talk to your transplant coordinator.
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Not registered with Transplant Experience?
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