This entry is only a very brief one as I have no labs this week, no doctor appointments, no new meds or anything else associated with my kidney...if you can believe that(!).
I have been pretty much exhausted all week due to packing up for our move this coming Saturday. I have to take turns of working for 10-15 minutes, then resting for at least that long before starting again. At least I made a lot of progress this past week having packed around 12 Large boxes and 16 Medium boxes. Fortunately, because of all the work I did last week, I have only about a third as much to do this week before the move.
Also, because of all the work I've done--along with the straining, lifting and tensing my jaw--my headaches have been way up...no shock there! I am managing them as best I can; but am looking forward to getting into the new place, unpacking, them being able to relax...
Next Tuesday is my next Belatacept infusion, as well as my next lab draw. I will post the next blog as soon as I have my lab results.
Oh...I finally had the brain power to write a Thank You letter to the family of the deceased donor [of my kidney]. I had previously called the Transplant Team to ask for any parameters for this letter, and received those a few days later. I sent the letter to the Team Social Worker who will forward that to the Transplant Team liaison for communications with donor families. That person will forward my letter to the family. I may or may not hear from the family in return.
In all likelihood, I will NOT be posting that letter here out of respect for the donor's family, their privacy and their grief.
That's all I have time for right now.
Have a fantastic week!
Good Health to All!
ScottW
Monday, September 24, 2018
Wednesday, September 19, 2018
Post-Transplant Update: 19 September 2018
I only have time for a fairly quick update [due to getting packed to move], so let me get right to the labs first...
18 Sept 18 Labs
*Creat: 2.38 (-0.02) Dropping
*HCT: 31.5 (-1.5) Low
*Hemo: 10.1 (-0.4) IR
*Lymph: 3.0 (-6.5) Extremely Low
*Lymph ABS: 0.2 (-0.4) Extremely Low
*Neut: 83.0 (-1.4) Extremely High
*Neut ABS: 4.6 (-0.8) IR
*RBC: 3.50 (-0.12) Very Low
*WBC: 5.4 (-1.0) IR
*BUN: 35 (-8) Very High
*CA: 10.0 (-0.2) IR
*GFR: 30 (+1) Extremely Low
*Gluc: 107
*K+: 4.3 (+0.2) IR
*NA+: 140 (+1) IR
*Prot: 7.0 (NC) IR
MG: 2.3 (+.02) IR
Phos: 2.9 (-0.1) IR
*BK: Not Taken
*CMV: Not Taken
NC= No Change IR= In (Target) Range
*I am only highlighting the Lymph and Lymph ABS this week because I had predicted last week that such a precipitous drop might occur. Again, this is just a normal part of recovering from a second immune system crash. It WILL stabilize as time goes on.
Yesterday was also my latest visit with the Kidney Clinic. In short, the doctors are extremely pleased with my progress! My kidney function is great, the labs are terrific, my daily BP readings are excellent and they stated that it "is evident you are getting more active just by looking at you." A fantastic visit!
Also, I am to reduce my frequency of lab visits to every other week, and my next Clinic visit won't be for six weeks. IF something comes up that is untowards, either I will call them, or they will contact me.
So, that is my short blog entry. I must get back to packing... (yay...?)
Good Health to All!
ScottW
18 Sept 18 Labs
*Creat: 2.38 (-0.02) Dropping
*HCT: 31.5 (-1.5) Low
*Hemo: 10.1 (-0.4) IR
*Lymph: 3.0 (-6.5) Extremely Low
*Lymph ABS: 0.2 (-0.4) Extremely Low
*Neut: 83.0 (-1.4) Extremely High
*Neut ABS: 4.6 (-0.8) IR
*RBC: 3.50 (-0.12) Very Low
*WBC: 5.4 (-1.0) IR
*BUN: 35 (-8) Very High
*CA: 10.0 (-0.2) IR
*GFR: 30 (+1) Extremely Low
*Gluc: 107
*K+: 4.3 (+0.2) IR
*NA+: 140 (+1) IR
*Prot: 7.0 (NC) IR
MG: 2.3 (+.02) IR
Phos: 2.9 (-0.1) IR
*BK: Not Taken
*CMV: Not Taken
NC= No Change IR= In (Target) Range
*I am only highlighting the Lymph and Lymph ABS this week because I had predicted last week that such a precipitous drop might occur. Again, this is just a normal part of recovering from a second immune system crash. It WILL stabilize as time goes on.
Yesterday was also my latest visit with the Kidney Clinic. In short, the doctors are extremely pleased with my progress! My kidney function is great, the labs are terrific, my daily BP readings are excellent and they stated that it "is evident you are getting more active just by looking at you." A fantastic visit!
Also, I am to reduce my frequency of lab visits to every other week, and my next Clinic visit won't be for six weeks. IF something comes up that is untowards, either I will call them, or they will contact me.
So, that is my short blog entry. I must get back to packing... (yay...?)
Good Health to All!
ScottW
Thursday, September 13, 2018
Post-Transplant Update: 13 September 2018
Another week has gone by with some positive signs as well as mixed results.
On the positive side, my energy has again increased slightly. Though I am still far, far away from boundless energy, I finally felt up to getting in a walk of about 200 yards. By the time I was about half done, I was walking slower, but still moving. By 150 yards I was limping, struggling and had to resort to using the cane I had brought along just in case this very thing happened. However, I made it all the way around the loop I had decided to try!
After needing to rest a couple of days, I did that same loop once more last evening, had the same result...but I finished. The long road to better strength always has to start somewhere, and this walking route was my somewhere. I am finally on my way!
Also on the positive side, for the third week in a row my labs showed nine results that were in the desired ranges. This is now a pattern, and clearly demonstrates some stability in those labs.
As far as the mixed results, let's begin with the headaches. The week has been one that looks like a graph chart...up; down; up; down... There have been a few days that the headaches were minimal and I took no T's and barely even took any Tylenol alone.
This is a definite improvement.
However, I have also had several days that were filled with sharp, intense headaches that T3's barely even touched, so I had to resort to either just getting through it; or when I was miserable, resorting to taking something stronger. Luckily, that has happened only once.
Anytime I can have a mixed week with the TMD headaches, it is a good week!
Along with the mixed results on the TMD, my latest labs are also a mixed bag. I already discussed the stable labs, so let's take a look at all of the results, then I'll discuss a few of these...
11 Sept 18 Labs
*Tac: NOT MEASURED!
*Creat: 2.40 (+0.04) Dropping
*HCT: 33 (-1.7) Low
*Hemo: 10.5 (-0.5) IR
*Lymph: 9.5 (+2.8) Extremely Low
*Lymph ABS: 0.6 (+0.2) Very Low
*Neut: 84.4 (+0.3) Extremely High
*Neut ABS: 5.4 (-.08) IR
*RBC: 3.62 (-0.15) Very Low
*WBC: 6.4 (-0.9) IR
*BUN: 43 (+6) Extremely High
*CA: 10.2 (-0.1) IR
*GFR: 29 (-1) Extremely Low
*Gluc: 104
*K+: 4.1 (-0.5) IR
*NA+: 139 (-2) IR
*Prot: 7.0 (-0.3) IR
*MG: 2.1 (-0.1) IR
*Phos: 3.0 (-0.6) IR
*BK: Not Checked
*CMV: Not Checked
IR= In Range NC= No Change
First of all, the Kidney Clinic doctors removed the Tac test from my labs altogether! That test is now a thing of the past!
The Lymphocytes jumped again, so I am not holding my breath that they will stay there. It would be nice if they did; but there will be no surprise on my part if they drop once more.
Along with the Lymph rise was a commensurate elevation of the Lymph ABS...just as it should.
The Neutrophils took an unexpected turn in the wrong direction. After a few drops towards range, I am surprised to see this increase.
And speaking of things trending in the wrong direction... The BUN took a second jump; now back into the 40's. This may be temporary (I'm hoping), so next weeks' labs will be a good indicator of either something going wrong, or it just being an anomaly.
In conjunction with the BUN, the GFR result also showed movement in the wrong direction. Again, next week will be a better indicator.
I am not at all concerned with the Creatinine, Hematocrit, Hemoglobin or RBC results. These are going to bounce around a bit; so unless something falls (or rises) precipitously, there is little to worry about here.
Last, I have my next Kidney Clinic visit next week, so any concerns the doctors might have will be addressed at that point.
Aside from the things discussed earlier, the week has actually been OK. My sleep has been decent; my dreams are under complete control; I have been stable as far as daily fluid intake at around 3.0 Liters every day; my appetite has remained in check commensurate with my activity level; my weight is up a little (hovering around 117 Kg) but I am addressing that every day; and my daily vitals have been good.
Body temps have had a tendency to be lower than normal (now 97.7 degrees f), and have hit a low of 95.0. In general, I am registering at around 96.9 degrees f.
Blood Pressures have been fairly stable with 115-133 diastolic in the A.M, and 126-146 diastolic in the P.M.
Heart Rates have also been ranging from the mid 60's to the low 80's, depending on my activity level.
All in all, not bad.
Finally, I am slowly prepping for our upcoming move. The condo that my wife and I live in is being sold by its owner. Luckily for us, a brand new townhouse [just up the road from where we now live] will be complete in about two weeks from now, and we already have a contract to live there. So, my next two or three blog entries could be sporadic, a bit glossed over, quick or all three. What energy I have will be quickly used as I pack things in preparation for the move on the last weekend on this month.
Once I am settled in, and my home office is set up, I will again get back to my regular entries.
Until then...Enjoy the final few days of Summer, and following the Autumnal Equinox, get ready for some beautiful Fall weather!
Good Health to All!
ScottW
On the positive side, my energy has again increased slightly. Though I am still far, far away from boundless energy, I finally felt up to getting in a walk of about 200 yards. By the time I was about half done, I was walking slower, but still moving. By 150 yards I was limping, struggling and had to resort to using the cane I had brought along just in case this very thing happened. However, I made it all the way around the loop I had decided to try!
After needing to rest a couple of days, I did that same loop once more last evening, had the same result...but I finished. The long road to better strength always has to start somewhere, and this walking route was my somewhere. I am finally on my way!
Also on the positive side, for the third week in a row my labs showed nine results that were in the desired ranges. This is now a pattern, and clearly demonstrates some stability in those labs.
As far as the mixed results, let's begin with the headaches. The week has been one that looks like a graph chart...up; down; up; down... There have been a few days that the headaches were minimal and I took no T's and barely even took any Tylenol alone.
This is a definite improvement.
However, I have also had several days that were filled with sharp, intense headaches that T3's barely even touched, so I had to resort to either just getting through it; or when I was miserable, resorting to taking something stronger. Luckily, that has happened only once.
Anytime I can have a mixed week with the TMD headaches, it is a good week!
Along with the mixed results on the TMD, my latest labs are also a mixed bag. I already discussed the stable labs, so let's take a look at all of the results, then I'll discuss a few of these...
11 Sept 18 Labs
*Tac: NOT MEASURED!
*Creat: 2.40 (+0.04) Dropping
*HCT: 33 (-1.7) Low
*Hemo: 10.5 (-0.5) IR
*Lymph: 9.5 (+2.8) Extremely Low
*Lymph ABS: 0.6 (+0.2) Very Low
*Neut: 84.4 (+0.3) Extremely High
*Neut ABS: 5.4 (-.08) IR
*RBC: 3.62 (-0.15) Very Low
*WBC: 6.4 (-0.9) IR
*BUN: 43 (+6) Extremely High
*CA: 10.2 (-0.1) IR
*GFR: 29 (-1) Extremely Low
*Gluc: 104
*K+: 4.1 (-0.5) IR
*NA+: 139 (-2) IR
*Prot: 7.0 (-0.3) IR
*MG: 2.1 (-0.1) IR
*Phos: 3.0 (-0.6) IR
*BK: Not Checked
*CMV: Not Checked
IR= In Range NC= No Change
First of all, the Kidney Clinic doctors removed the Tac test from my labs altogether! That test is now a thing of the past!
The Lymphocytes jumped again, so I am not holding my breath that they will stay there. It would be nice if they did; but there will be no surprise on my part if they drop once more.
Along with the Lymph rise was a commensurate elevation of the Lymph ABS...just as it should.
The Neutrophils took an unexpected turn in the wrong direction. After a few drops towards range, I am surprised to see this increase.
And speaking of things trending in the wrong direction... The BUN took a second jump; now back into the 40's. This may be temporary (I'm hoping), so next weeks' labs will be a good indicator of either something going wrong, or it just being an anomaly.
In conjunction with the BUN, the GFR result also showed movement in the wrong direction. Again, next week will be a better indicator.
I am not at all concerned with the Creatinine, Hematocrit, Hemoglobin or RBC results. These are going to bounce around a bit; so unless something falls (or rises) precipitously, there is little to worry about here.
Last, I have my next Kidney Clinic visit next week, so any concerns the doctors might have will be addressed at that point.
Aside from the things discussed earlier, the week has actually been OK. My sleep has been decent; my dreams are under complete control; I have been stable as far as daily fluid intake at around 3.0 Liters every day; my appetite has remained in check commensurate with my activity level; my weight is up a little (hovering around 117 Kg) but I am addressing that every day; and my daily vitals have been good.
Body temps have had a tendency to be lower than normal (now 97.7 degrees f), and have hit a low of 95.0. In general, I am registering at around 96.9 degrees f.
Blood Pressures have been fairly stable with 115-133 diastolic in the A.M, and 126-146 diastolic in the P.M.
Heart Rates have also been ranging from the mid 60's to the low 80's, depending on my activity level.
All in all, not bad.
Finally, I am slowly prepping for our upcoming move. The condo that my wife and I live in is being sold by its owner. Luckily for us, a brand new townhouse [just up the road from where we now live] will be complete in about two weeks from now, and we already have a contract to live there. So, my next two or three blog entries could be sporadic, a bit glossed over, quick or all three. What energy I have will be quickly used as I pack things in preparation for the move on the last weekend on this month.
Once I am settled in, and my home office is set up, I will again get back to my regular entries.
Until then...Enjoy the final few days of Summer, and following the Autumnal Equinox, get ready for some beautiful Fall weather!
Good Health to All!
ScottW
Wednesday, September 5, 2018
Post-Transplant Update: 05 September 2018
First off, today, 05 Sept. is the birthday of one of my personal musical hero's, the late, great Freddie Mercury. Had he not died of AIDS in 1991, Freddie would have turned 72 today. I cannot even imagine the incredible music he would be writing now...
Happy Birthday, Freddie! The music world, and millions of fans miss you immensely!
Alright, onto the news of the week...
Yes, I did go to my schedule appointment with my local nephrologist last Wednesday. As expected, we discussed meds, progress, events since my transplant, etc. I shared much information that the Transplant Clinic is doing and looking at, where things are headed and the expected additional doctor visits in other medical disciplines that I need to see.
My doctor was actually excited to see all of the scars on my abdomen! I gladly obliged his request, and when he saw the scars, he literally got a wide-eyed look, and uttered his astonishment at how well I was doing considering everything I've been through in the last sixteen months. We both laughed at his reaction!
Afterwards, we set two future appointments for November and February. However, should the Kidney Clinic release me, that schedule will certainly change.
Yesterday was my final dose of Tacrolimus; 0.5 mg with my A.M. meds. In the afternoon I had my latest Belatacept infusion. As always, 600 mg in 100cc of NS (Normal Saline), over 30 minutes. The stick was a little difficult, but everything went smoothly and I now have 27 more days until the next infusion.
As I have a few things to discuss regarding my latest labs, let's review those now...
04 Sept 18 Labs
*Tac: 2.0 (-0.6)
*Creat: 2.36 (+0.13) Dropping
*HCT: 34.7 (+1.4) Low
*Hemo: 11.0 (+0.4) IR
*Lymph: 5.7 (-6.7) Extremely Low
*Lymph ABS: 0.4 (-0.2) Extremely Low
*Neut: 84.1 (+1.4) Extremely High
*Neut ABS: 6.2 (+1.9) IR
*RBC: 3.76 (+0.11) Low
*WBC: 7.3 (+2.1) IR
*BUN: 35 (-3) Very High
*CA: 10.3 (+0.2) IR
*GFR: 30 (-2) Extremely Low
*K+: 4.6 (+0.3) IR
*NA+: 141 (+1) IR
*Prot: 7.3 (+0.3) IR
*MG: 2.2 (+0.2) IR
*Phos: 3.6 (+0.7) IR
*BK: Not Detected
*CMV: Not Detected
IR= In Range NC=No Change
As I anticipated in last weeks' entry, my Lymphocytes took another dive. The Lymph ABS also fell in conjunction. I'm glad that I continued precautions all week. Had I not, the lymphocytes might have fallen even further, and I would have run the risk of getting sick.
The Hematocrit rose nicely once more, and though still low, I am getting close to having that where it needs to be!
Additionally, there was another rise in my Red Blood Cells. Incremental though the rise was, I am inching closer to the low end of the desired range.
This week, of the seventeen labs I am tracking, there are 9 results within the ranges needed. This in unchanged from last week, which is excellent! This means some labs are finally stabilizing. There are still between 1-4 months [post-rejection episode] before everything should settle into a semblance of the appropriate ranges.
Next, my TMD headaches had a small lull this week; which was great! Any downturn, however brief, is happily welcomed! I still monitor and adjust my jaw at night. This seems to be continuing to help alleviate the headaches a/o their intensity. I will keep doing this and look for additional relief.
Sleep has been good and bad. Most nights I do OK as far as getting back to sleep, but I remain sleepy tired most of the time; which tells me that the quality of sleep I am getting has been less than good. I don't know that there is any real solution to this until I am healed up and at least getting in some decent walking every day.
While I'm on the subject of sleep, the number of times I have gotten up at night [this last week] to empty my bladder has ranged between 2-5. I try to limit my late evening fluid intake, which definitely helps reduce the times I awaken, but this doesn't always happen.
On this same subject, my kidney is doing exactly as is should and is processing all the fluids I take in each day. My weight has been fairly consistent, as has my fluid intake. Now, I just need my bladder to expand more so I can have fewer visits to the restroom every day. And now that the surgeries and various recovery periods [for rejections] are behind me, I am hoping this will finally improve.
This week I am beginning my walking...however brief they may be, at first. It will be challenging to get my legs and back used to walking for any distance again. My physical conditioning is so depleted that even a slow walk over a couple of hundred yards is incredibly difficult. However, like any exercise program, getting started is THE hardest part. My body will adjust, adapt and improve. I will be sore, exhausted and have extreme physical and mental opposition. I just need to stick with it, let my body rest as needed, and continue to move forward, however slow it might be.
I believe that that is all I have for today.
Until next week...
Good Health to All!
ScottW
Happy Birthday, Freddie! The music world, and millions of fans miss you immensely!
Alright, onto the news of the week...
Yes, I did go to my schedule appointment with my local nephrologist last Wednesday. As expected, we discussed meds, progress, events since my transplant, etc. I shared much information that the Transplant Clinic is doing and looking at, where things are headed and the expected additional doctor visits in other medical disciplines that I need to see.
My doctor was actually excited to see all of the scars on my abdomen! I gladly obliged his request, and when he saw the scars, he literally got a wide-eyed look, and uttered his astonishment at how well I was doing considering everything I've been through in the last sixteen months. We both laughed at his reaction!
Afterwards, we set two future appointments for November and February. However, should the Kidney Clinic release me, that schedule will certainly change.
Yesterday was my final dose of Tacrolimus; 0.5 mg with my A.M. meds. In the afternoon I had my latest Belatacept infusion. As always, 600 mg in 100cc of NS (Normal Saline), over 30 minutes. The stick was a little difficult, but everything went smoothly and I now have 27 more days until the next infusion.
As I have a few things to discuss regarding my latest labs, let's review those now...
04 Sept 18 Labs
*Tac: 2.0 (-0.6)
*Creat: 2.36 (+0.13) Dropping
*HCT: 34.7 (+1.4) Low
*Hemo: 11.0 (+0.4) IR
*Lymph: 5.7 (-6.7) Extremely Low
*Lymph ABS: 0.4 (-0.2) Extremely Low
*Neut: 84.1 (+1.4) Extremely High
*Neut ABS: 6.2 (+1.9) IR
*RBC: 3.76 (+0.11) Low
*WBC: 7.3 (+2.1) IR
*BUN: 35 (-3) Very High
*CA: 10.3 (+0.2) IR
*GFR: 30 (-2) Extremely Low
*K+: 4.6 (+0.3) IR
*NA+: 141 (+1) IR
*Prot: 7.3 (+0.3) IR
*MG: 2.2 (+0.2) IR
*Phos: 3.6 (+0.7) IR
*BK: Not Detected
*CMV: Not Detected
IR= In Range NC=No Change
As I anticipated in last weeks' entry, my Lymphocytes took another dive. The Lymph ABS also fell in conjunction. I'm glad that I continued precautions all week. Had I not, the lymphocytes might have fallen even further, and I would have run the risk of getting sick.
The Hematocrit rose nicely once more, and though still low, I am getting close to having that where it needs to be!
Additionally, there was another rise in my Red Blood Cells. Incremental though the rise was, I am inching closer to the low end of the desired range.
This week, of the seventeen labs I am tracking, there are 9 results within the ranges needed. This in unchanged from last week, which is excellent! This means some labs are finally stabilizing. There are still between 1-4 months [post-rejection episode] before everything should settle into a semblance of the appropriate ranges.
Next, my TMD headaches had a small lull this week; which was great! Any downturn, however brief, is happily welcomed! I still monitor and adjust my jaw at night. This seems to be continuing to help alleviate the headaches a/o their intensity. I will keep doing this and look for additional relief.
Sleep has been good and bad. Most nights I do OK as far as getting back to sleep, but I remain sleepy tired most of the time; which tells me that the quality of sleep I am getting has been less than good. I don't know that there is any real solution to this until I am healed up and at least getting in some decent walking every day.
While I'm on the subject of sleep, the number of times I have gotten up at night [this last week] to empty my bladder has ranged between 2-5. I try to limit my late evening fluid intake, which definitely helps reduce the times I awaken, but this doesn't always happen.
On this same subject, my kidney is doing exactly as is should and is processing all the fluids I take in each day. My weight has been fairly consistent, as has my fluid intake. Now, I just need my bladder to expand more so I can have fewer visits to the restroom every day. And now that the surgeries and various recovery periods [for rejections] are behind me, I am hoping this will finally improve.
This week I am beginning my walking...however brief they may be, at first. It will be challenging to get my legs and back used to walking for any distance again. My physical conditioning is so depleted that even a slow walk over a couple of hundred yards is incredibly difficult. However, like any exercise program, getting started is THE hardest part. My body will adjust, adapt and improve. I will be sore, exhausted and have extreme physical and mental opposition. I just need to stick with it, let my body rest as needed, and continue to move forward, however slow it might be.
I believe that that is all I have for today.
Until next week...
Good Health to All!
ScottW
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