To start, this is likely my last entry for the year due to my upcoming Caribbean cruise.
I leave two days after Christmas, and won't return until the morning of January 7th.
So, let's get to it...
I had my initial acupuncture Tx (treatment) on my feet [to treat the neuropathy], and it actually did some initial good. A couple of days later, while on a walk, I noticed that my feet actually felt cold...something that hasn't happened in at least five years! Additionally, I felt less heat in both feet while walking around the house, and more numbness...again, something I haven't experienced in years. So, the acupuncture has helped. I've already had a second Tx [with more positive results], with one more on Friday, then one last one (before the cruise) next Wednesday.
Also, I began acupuncture to help the TMD headaches. This one, as I've already stated, will not be so easy to resolve. It will take some time to see any positive results; but at least the Tx's have begun.
I also asked about acupuncture for the kidney, and my doctor stated that, seeing that it is a transplanted organ, and in a different location, he was unsure about any Tx, but would research any possible needle placements. If we can proceed, I will certainly let you know.
And on the subject of my headaches, they have been in a severe uptick all month. Right now, my daily average headache ranges between 6-8. As a result, I get no breaks--even brief ones--and my med usage (Tylenol and T3's) is up. The NTI devices are doing little to curtail the pain, and all of my efforts to mitigate the TMD effects are merely brushed away by the resilient, intense pain. When I previously got the TMD under control, back around 2000, I remember the headaches getting extremely intense before what became the actual decline of the pain had begun. So, on I go; hoping for better days ahead in this area.
Next, my December visit to the Kidney Clinic went well. The doctors are please with my overall progress; so much so that, barring any unforeseen complications, my January visit will be my last one with the Clinic. After that, I am to be turned over once again to my local Nephrologist. I must admit that I am more than a little trepidacious about that transition. After all, the last time I was handed over to my local doctor, I had a full-blown rejection episode about one month later. Let's just hope that nothing else happens to set me back even further.
11 Dec 18 Labs:
*Creat: 2.67 (-0.14)
*HCT: 33.8 (-2.5) Low
*Hemo: 10.6 (-0.7) IR
*Lymph: 1.8 (-6.5) Extremely Low
*Lymph ABS: 0.2 (-0.5) Extremely Low
*Neut: 84.1 (+1.1) High
*Neut ABS: 7.1 (+0.6) High
*RBC: 3.72 (-0.27) Very Low
*WBC: 8.4 (+0.6) IR
*BUN: 62 (+20) Extremely High
*CA: 9.7 (-0.5) IR
*GFR: 26 (+1) Extremely Low
*Gluc: 98
*K+: 4.4 (NC) IR
*NA+: 141 (NC) IR
*Prot: 6.7 (-0.4) IR
*MG: 2.5 (NC) IR
*Phos: 3.9 (+0.2) IR
*BK/CMV: Not Checked
The Creatinine is coming down. However, the clinic doctors stated that my final creatinine level may simply be higher than expected. Time, exercise and personal body chemistry will all be determinants in where this settles as a final range. Until then, it will likely vacillate from lab draw to lab draw.
The Hematocrit, Hemoglobin and Red Blood Cells all seem stable; at this point.
The Lymphocytes took another nasty plunge after a short period of stability. I was told that with the White Blood Cells holding steady, I should be fine, so long as I continue with precautions. Both Lymphocyte readings should soon stabilize, as well.
And Lastly on the labs, I am essentially done with the BK and CMV checks. Aside from once per year, the BK will not be looked at; and, contrary to what I had previously believed (and NOT accurately whatsoever), the CMV is only checked once or twice following transplant to assure this organ-killing virus was not transferred to the recipient. So, unless I have another transplant, there are no more CMV checks.
My next Belatacept infusion is on Christmas Eve. I do not anticipate any side effects at this point.
As a precaution, I have been prescribed an antibiotic to take each day during the cruise. This will simply help my body to fight anything I might be exposed to. Aside from that, I will be wearing masks as much as I can. This will be at any airports, hotels, on the ship, on shore excursions etc. Basically, any time I am around a lot of people--aside from whenever I eat--I will be wearing a mask. Additionally, I will be freely using hand sanitizer at any and all opportunities. While I do not anticipate any issues arising, I will NOT be taking any unnecessary chances with my kidney.
My weight has increased again. As of this morning, I am up to 121 Kg's. I have already been instructed to reduce the Lasix to 40 mg/day (in the morning), plus, to increase my water intake to 2.5 Liters every day; in addition to any other fluids. So far, my weight, though up, has held fairly steady. Let's hope this continues...
Despite my weight gain, I have noticed that I am unconsciously holding my abdomen in nearly all of the time. This is extremely good news! This basically means that I am finally regaining some of my core strength following the long hernia repair recovery. Though that numbness throughout the abdomen still exists, the fact that I am able to develop core strength without realizing it is incredible! This fact gives me tremendous hope for furthering my ability to begin core exercises sooner than I had anticipated. Plus, I am walking better, stronger and a bit faster. Even though my daily walks are not consistent right now, what I have done so far has proven to be muscle-building, and I am getting excited for what lies ahead.
I think that that is about all I have.
Again, I will not post another entry until after the New Year.
May you all have a Very Merry Christmas!
And Happy New Year!
Good Health to All!
ScottW
Wednesday, December 19, 2018
Wednesday, December 5, 2018
Post-Transplant Update: 05 December 2018
After last weeks' biopsy, the Kidney Clinic doctors asked me to cut down on the Lasix from 80 mg/day to 40 mg/day; taking the med in the morning. Also, that I was to limit my fluid intake to around 2.5L/day. Last, that I re-do my labs on Monday morning.
Here are those results...
03 Dec 18 Labs
*Creat: 2.73 (-0.11) Lowering
*HCT: 36.3 (+2.7) IR
*Hemo: 11.3 (+0.38) IR
*Lymph: 8.3 (+0.3) Low
*Lymph ABS: 0.7 (NC) Low
*Neut: 83.0 (-0.8) High
*Neut ABS: 6.5 (-0.4) IR
*RBC: 3.97 (+0.35) Very Low
*WBC: 7.8 (-0.5) IR
*BUN: 42 (-9) Extremely High
*CA: 10.2 (+0.4) IR
*GFR: 25 (+1) Extremely Low
*Gluc: 103
*K+: 4.4 (-0.3) IR
*NA+: 141 (-3) IR
*Prot: 7.1 (+0.2) IR
*MG: 2.5 (+0.3) IR
*Prot: 3.5 (-0.9) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
As highlighted, the Creatinine lowered, which is great news!
Alongside that, the BUN dropped nicely; getting out of the danger zone.
Lastly, the Hematocrit, Hemoglobin, Red Blood Cells and Lymphocytes all display more stability! There are also a total of TEN lab values that are now in their current ranges! THAT is terrific news!
For the second lab draw in a row, I am finally seeing stabilization in these critical numbers. (Deep sigh of relief!)
The TMD headaches continue unabated. However, I am finally going to get acupuncture for the headaches this coming Friday afternoon. I will need a number of treatments before I make any significant headway in relieving the headaches.
Also that day, I will see about acupuncture to help heal the remaining neuropathy in my feet. And, being the traditional medicine that acupuncture is, I will also ask about the possibility of helping the kidney work better. I'll try to remember to update you on things in these fronts.
My sleep has been off schedule this week for some reason. I took long naps on consecutive days both Monday and Tuesday. Though I got too little sleep last night, I am staying awake today in an attempt to turn my sleep cycle around...again.
Lastly, on Sunday evening I suddenly got sick to my stomach after feeling fine all day.
I had a total of four episodes of emesis (vomiting) that evening. One was after dinner, and I have no idea if I ejected my PM meds. Whenever this happens, a transplant patient cannot chance doubling any meds that may have gotten into your system. Instead, you act as if you had missed a dosage and simply take your next scheduled dosage on time.
By Monday morning, I felt completely back to normal. I took my AM meds, as scheduled and had no further incidences of emesis.
And that catches you up.
Have a terrific week, and always look for the good in all situations...even when that may be the very last thing you feel like doing.
Good Health to All!
ScottW
Here are those results...
03 Dec 18 Labs
*Creat: 2.73 (-0.11) Lowering
*HCT: 36.3 (+2.7) IR
*Hemo: 11.3 (+0.38) IR
*Lymph: 8.3 (+0.3) Low
*Lymph ABS: 0.7 (NC) Low
*Neut: 83.0 (-0.8) High
*Neut ABS: 6.5 (-0.4) IR
*RBC: 3.97 (+0.35) Very Low
*WBC: 7.8 (-0.5) IR
*BUN: 42 (-9) Extremely High
*CA: 10.2 (+0.4) IR
*GFR: 25 (+1) Extremely Low
*Gluc: 103
*K+: 4.4 (-0.3) IR
*NA+: 141 (-3) IR
*Prot: 7.1 (+0.2) IR
*MG: 2.5 (+0.3) IR
*Prot: 3.5 (-0.9) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
As highlighted, the Creatinine lowered, which is great news!
Alongside that, the BUN dropped nicely; getting out of the danger zone.
Lastly, the Hematocrit, Hemoglobin, Red Blood Cells and Lymphocytes all display more stability! There are also a total of TEN lab values that are now in their current ranges! THAT is terrific news!
For the second lab draw in a row, I am finally seeing stabilization in these critical numbers. (Deep sigh of relief!)
The TMD headaches continue unabated. However, I am finally going to get acupuncture for the headaches this coming Friday afternoon. I will need a number of treatments before I make any significant headway in relieving the headaches.
Also that day, I will see about acupuncture to help heal the remaining neuropathy in my feet. And, being the traditional medicine that acupuncture is, I will also ask about the possibility of helping the kidney work better. I'll try to remember to update you on things in these fronts.
My sleep has been off schedule this week for some reason. I took long naps on consecutive days both Monday and Tuesday. Though I got too little sleep last night, I am staying awake today in an attempt to turn my sleep cycle around...again.
Lastly, on Sunday evening I suddenly got sick to my stomach after feeling fine all day.
I had a total of four episodes of emesis (vomiting) that evening. One was after dinner, and I have no idea if I ejected my PM meds. Whenever this happens, a transplant patient cannot chance doubling any meds that may have gotten into your system. Instead, you act as if you had missed a dosage and simply take your next scheduled dosage on time.
By Monday morning, I felt completely back to normal. I took my AM meds, as scheduled and had no further incidences of emesis.
And that catches you up.
Have a terrific week, and always look for the good in all situations...even when that may be the very last thing you feel like doing.
Good Health to All!
ScottW
Saturday, December 1, 2018
Post-Transplant Update: 01 December 2018
Well, I obviously failed to update my blog earlier this week; here's why...
Lt's begin with this weeks' labs.
27 Nov 18 Labs
*Creat: 2.84 (+0.14) Rising (3rd consecutive increase)
*HCT: 33.6 (-0.1) Low, but stable
*Hemo: 10.5 (+0.1) IR and stable
*Lymph: 8.0 (-1.0) Low, but stable
*Lymph ABS: 0.7 (+0.2) Low, but stable
*Neut: 83.8 (+6.5) Very High
*Neut ABS: 6.9 (+2.9) Very High
*RBC: 3.62 (-0.04) Low, but stable
*WBC: 8.3 (+3.1) IR
*BUN: 51 (+6) Extremely High
*CA: 9.8 (-0.1) IR
*GFR: 24 (-1) Extremely Low
*Gluc: 108
*K+: 4.7 (+0.5) IR
*NA+: 144 (+5) IR
*Prot: 6.9 (NC) IR
*MG: 2.2 (-0.2) IR
*Phos: 4.4 (+0.5) IR
*BK: Not Detected
*CMV: Not Checked
NC= No Change IR= In Range
First, the stability of the HCT, Hemo, RBC, Lymph and Lymph ABS are most welcome! Earlier posts had my postulating on hoping the time for fluctuation of all of these labs was drawing to a close. Had one or two of these been stable I would have been pleased; but having all five stable was terrific news! Let's now hope that the stabilization continues.
The big news though, is why I have been delayed getting this post written.
With the 3rd consecutive increase of the Creatinine, I received a call on Wednesday from one of the Kidney Clinic doctors who wanted me to get another Renal Biopsy, just to rule out any possible rejection. The test was set up for Thursday morning.
As I have gone in-depth about previous biopsies, I will skip the details about the procedure aside from a few items. First, I had no negative or untoward reactions during this latest test. (Excellent news!) Second, the first kidney tissue sample that was aspirated (drawn) was the only sample needed, which was nice. Last...and this is one my wife wanted on here...I slept well afterwards...
Following the usual 4+ hour post-biopsy wait time to check for any bleeding, we were on the way home. I then spent yesterday recovering from what is always a painful test. I am still very sore today, but it is improved.
Also, the Clinic doctor called yesterday to state that there is no apparent rejection happening! This is fantastic news!
(I am posting the official biopsy report at the end of this entry.)
In other news: I had my latest Belatacept Infusion on Tuesday. The stick was good, the infusion was uneventful and I have had zero side effects from the med.
On Wednesday I met with my local Nephrologist to update him on how everything is progressing. Aside from the while Creatinine thing he is very pleased with my current progress; especially with my electrolyte levels. Also, I asked him why my Blood Glucose reading is always high on my labs (80-100 is normal). He told me that with all the meds, the body responds by releasing extra sugar from the liver to compensate for the toxicity of the meds themselves. (It's a very simple explanation of the why.) So, now I understand why the Blood Sugar is high despite not eating prior to having my labs drawn.
That's all I have for today. There just wasn't much happening other than what I've already discussed. So, remember to read the post-biopsy report below, if it interests you.
Until next time...
Good Health to All!
ScottW
Surgical Pathology Report
THIS IS AN ADDENDUM REPORT, PLEASE SEE THE END OF THE REPORT FOR ADDENDUM DATA REPORT STATUS:
Addendum Final REASON FOR ADDENDUM: Ancillary Test Result(s) Addenda listed at the end of the original report
PHYSICIAN: NP ACCESSION DATE: 11/29/2018 REPORT DATE: 11/30/2018
**** THIS IS AN ADDENDUM REPORT **** PATIENT: SCOTT W
Clinical History: 55yo M with DDKT 5/4/17 for PCKD; h/o ACR type 2A in Sept 2017, type 1B in Mar 2018; now with Creat 2.8 (has been stable at 2.2). Special Exams Requested:
FINAL DIAGNOSIS:
- FEATURES SUGGESTIVE OF CHRONIC CALCINEURIN INHIBITOR TOXICITY. - NEGATIVE FOR ACUTE CELLULAR AND ANTIBODY-MEDIATED REJECTION. - SEE COMMENT.
COMMENT:
The biopsy is adequate for interpretation and shows frequent arteriolar hyalinosis, striped interstitial fibrosis/ tubular atrophy (about 20% overall), and mild-moderate arteriosclerosis. While donor- or recipient-derived diabetic or hypertensive disease might show some of these morphologic features, the glomeruli in this case are very well-preserved and do not show any of the changes typically associated with such disease. In this context, the features are suggestive of chronic calcineurin inhibitor (CNI) toxicity.
There is no evidence of active thrombotic microangiopathy. There is also no significant interstitial inflammation, tubulitis, glomerulitis, or peritubular capillaritis, and C4d staining is negative, helping to exclude acute rejection. No viral cytopathic effect is seen, although staining for BK virus will be performed and reported as an addendum.
Intermountain Medical Center, ScottW, Surgical Pathology Report, 12/01/2018 11:22:17 AM
Banff classification: g0, t0, i0, v0, cg0, ct1, ci1, cv1, ah3, mm0, ptc0
GROSS EXAMINATION:
The specimen consists of 1 fragments of renal tissue, measuring 2.5 cm, submitted for light microscopic examination. In addition, small fragments of renal tissue are submitted for immunofluorescence studies and electron microscopy.
MICROSCOPIC EXAMINATION:
One H+E-, one PAS-, one trichrome-, and one Jones silver-stained slide is reviewed. Serial sections through the biopsy show 1 fragments of renal cortex containing up to 24 glomeruli, 6 of which are globally sclerosed with associated features of ischemia and obsolescence (periglomerular fibrosis and collapse with PAS-negative material in Bowman's space). The glomeruli otherwise do not show increase in mesangial matrix nor increase in mesangial cellularity. The capillary loops appear smooth, patent, and do not contain holes, spikes, or splitting.
Endocapillary proliferation, segmental sclerosis, and crescents are not identified. There is a noticeably striped pattern of interstitial fibrosis and tubular atrophy involving about 20% of the tissue and associated with minimal chronic inflammation including a rare eosinophil and a few neutrophils. There are also very focal areas of tubules with isometric vacuolization and a few with dilated lumina. Scattered luminal calcifications are also seen. The majority of the arterioles present for evaluation show medial hyalinosis in a fairly symmetric circumferential distribution. The interlobular arteries demonstrate mild to moderate intimal fibrosis.
A C4d immunofluorescent stain is performed with appropriately reactive internal controls and is negative. Three glomeruli are present in the IF sample.
ADDENDUM:
This addendum is issued to report the results of an immunohistochemical stain* for BK virus (Polyoma), performed with appropriately reactive controls. The result is negative.
The final diagnosis is unchanged.
Intermountain Medical Center, ScottW63, Surgical Pathology Report, 12/01/2018 11:22:17 AM
Page 3 of 3
REPORT STATUS: Addendum Final
Saturday, November 17, 2018
Post-Transplant Update: 17 November 2018
The results from last weekends' Lasix test were disappointing; to say the least.
Over the four days I had, I lost a total of 1.30 Kg--or, about 2.8 pounds. The weight loss was NOT consistent, however. From day to day my weight would just yoyo. Luckily, the last day ended on a drop to give me the final total loss.
I spoke with my Clinic doctor on Monday, and with the abbreviated weight loss, the doctor wants to up the Lasix from 40 mg 1x/day to 40 mg 2x/day to see if this makes any difference. I have been on this schedule since Wednesday, and have dropped only about 3/10's of a Kg in overall water loss. So far, I have had no cramping or any signs of dehydration. As per instructions, I am to call the doctor once I hit a sustained total loss of 1.6 Kg.
My labs this week were nearly all improved. Let's look at those...
13 Nov 18 Labs
*Creat: 2.70 (+0.25) An unexpected rise
*HCT: 33.7 (+0.8) Low
*Hemo: 10.4 (+0.3) IR
*Lymph: 9.0 (+6.2) Very Low
*Lymph ABS: 0.5 (+0.3) Very Low
*Neut: 77.3 (-3.8) High
*Neut ABS: 4.0 (-1.2) IR
*RBC: 3.66 (+0.08) Low
*WBC: 5.2 (-1.3) IR
*BUN: 45 (+3) Extremely High
*CA: 9.9 (-0.1) IR
*GFR: 25 (-4) Extremely Low
*Gluc: 106
*K+: 4.2 (-0.3) IR
*NA+: 139 (-2) IR
*Prot: 6.9 (+0.1) IR
*MG: 2.4 (+0.1) IR
*Phos: 3.9 (+0.4) IR
*BK: Not Detected
*CMV: Not Checked
NC= No Change IR= In Range
The good news on the labs is that the Hemoglobin, Hematocrit and Red Blood Cells all showed improvement over the past two weeks, and with no additional help from an Aranesp injection! Plus, nine of the labs ended up in the proper ranges; which is excellent!
On the not-so-good side of things, the Creatinine jumped unexpectedly. This could be due to two things either individually, or in conjunction: my sustained weight gain and the muscle building I am achieving in my legs as the result of my daily walks.
Though the doctors are not yet sure why the Creatinine is higher, which is one reason I am trying to lose more water weight.
Plus, I am told by the Clinic doctors that building muscle will raise the natural Creatinine level in your body. So because of that fact, as I grow stronger and start more and more exercises, it will be interesting to see just where my Creatinine ends up.
Anyhow, along with the jump in Creatinine, both the BUN and GFR took jumps in the wrong directions. While I know that these three are connected, I do NOT understand the pathophysiology of said connection, nor any associated issues that occur because of the movements. I really cannot even guess the outcomes of those connections.
Also on the labs, the Lymphocytes did another big jump this week. I am hoping that, with the amount of time that has passed since the rejection, the stabilization I have discussed previously will now begin.
The TMD headaches this week have been terrible. My T3 usage is up to 4/day (+ Tylenol). That increase is about 1.3/day over earlier this month. The previous lull in the intensity and frequency [of the headaches] is definitely gone. My jaw is popping BIG TIME! Even using my NTI devices at night has been zero help. So, I go on...
The walking has been going well. I am doing that same loop a bit faster, and with less help from the cane. I will be timing myself this coming week and working to lower that time a little every day. With time, I will add on more distance as I slowly increase my ability to walk, strengthen my legs and increase my stamina. My current lack of muscles mass and stamina took nine years to devolve to. Getting back all of those muscles and stamina will also take a long time, as previously discussed. But again, at least I have started on that lengthy path.
My appetite is staying within my physical activity. My fluid intake remains between 2.5-3.0 L per day despite the Lasix. I will adjust this as needed on the diuretic therapy.
My brain is waking up more, and I have finally begun running errands by myself. I'm talking about grocery shopping, getting household supplies, and picking up my meds all by my lonesome! (Believe me, if you understood what all of that means to my wife, you'd have a huge appreciation for what she did for me the last nine years! So this is BIG!)
Doing all those errands wears me out, but at least I am getting them done with no assistance.
Plus, I am remembering details, questions and even short-term memory with greater accuracy than since I was placed on dialysis. In effect, I am finally getting my brain back! This too will be a long road to fully realize a healthy brain, but I am well on my way!
I think that that is all I have for you today.
With Thanksgiving celebrations next week, I may not get a new entry written until the following week. If I don't write, I hope that you all have a safe, enjoyable Thanksgiving holiday!
Good Health to All!
ScottW
Over the four days I had, I lost a total of 1.30 Kg--or, about 2.8 pounds. The weight loss was NOT consistent, however. From day to day my weight would just yoyo. Luckily, the last day ended on a drop to give me the final total loss.
I spoke with my Clinic doctor on Monday, and with the abbreviated weight loss, the doctor wants to up the Lasix from 40 mg 1x/day to 40 mg 2x/day to see if this makes any difference. I have been on this schedule since Wednesday, and have dropped only about 3/10's of a Kg in overall water loss. So far, I have had no cramping or any signs of dehydration. As per instructions, I am to call the doctor once I hit a sustained total loss of 1.6 Kg.
My labs this week were nearly all improved. Let's look at those...
13 Nov 18 Labs
*Creat: 2.70 (+0.25) An unexpected rise
*HCT: 33.7 (+0.8) Low
*Hemo: 10.4 (+0.3) IR
*Lymph: 9.0 (+6.2) Very Low
*Lymph ABS: 0.5 (+0.3) Very Low
*Neut: 77.3 (-3.8) High
*Neut ABS: 4.0 (-1.2) IR
*RBC: 3.66 (+0.08) Low
*WBC: 5.2 (-1.3) IR
*BUN: 45 (+3) Extremely High
*CA: 9.9 (-0.1) IR
*GFR: 25 (-4) Extremely Low
*Gluc: 106
*K+: 4.2 (-0.3) IR
*NA+: 139 (-2) IR
*Prot: 6.9 (+0.1) IR
*MG: 2.4 (+0.1) IR
*Phos: 3.9 (+0.4) IR
*BK: Not Detected
*CMV: Not Checked
NC= No Change IR= In Range
The good news on the labs is that the Hemoglobin, Hematocrit and Red Blood Cells all showed improvement over the past two weeks, and with no additional help from an Aranesp injection! Plus, nine of the labs ended up in the proper ranges; which is excellent!
On the not-so-good side of things, the Creatinine jumped unexpectedly. This could be due to two things either individually, or in conjunction: my sustained weight gain and the muscle building I am achieving in my legs as the result of my daily walks.
Though the doctors are not yet sure why the Creatinine is higher, which is one reason I am trying to lose more water weight.
Plus, I am told by the Clinic doctors that building muscle will raise the natural Creatinine level in your body. So because of that fact, as I grow stronger and start more and more exercises, it will be interesting to see just where my Creatinine ends up.
Anyhow, along with the jump in Creatinine, both the BUN and GFR took jumps in the wrong directions. While I know that these three are connected, I do NOT understand the pathophysiology of said connection, nor any associated issues that occur because of the movements. I really cannot even guess the outcomes of those connections.
Also on the labs, the Lymphocytes did another big jump this week. I am hoping that, with the amount of time that has passed since the rejection, the stabilization I have discussed previously will now begin.
The TMD headaches this week have been terrible. My T3 usage is up to 4/day (+ Tylenol). That increase is about 1.3/day over earlier this month. The previous lull in the intensity and frequency [of the headaches] is definitely gone. My jaw is popping BIG TIME! Even using my NTI devices at night has been zero help. So, I go on...
The walking has been going well. I am doing that same loop a bit faster, and with less help from the cane. I will be timing myself this coming week and working to lower that time a little every day. With time, I will add on more distance as I slowly increase my ability to walk, strengthen my legs and increase my stamina. My current lack of muscles mass and stamina took nine years to devolve to. Getting back all of those muscles and stamina will also take a long time, as previously discussed. But again, at least I have started on that lengthy path.
My appetite is staying within my physical activity. My fluid intake remains between 2.5-3.0 L per day despite the Lasix. I will adjust this as needed on the diuretic therapy.
My brain is waking up more, and I have finally begun running errands by myself. I'm talking about grocery shopping, getting household supplies, and picking up my meds all by my lonesome! (Believe me, if you understood what all of that means to my wife, you'd have a huge appreciation for what she did for me the last nine years! So this is BIG!)
Doing all those errands wears me out, but at least I am getting them done with no assistance.
Plus, I am remembering details, questions and even short-term memory with greater accuracy than since I was placed on dialysis. In effect, I am finally getting my brain back! This too will be a long road to fully realize a healthy brain, but I am well on my way!
I think that that is all I have for you today.
With Thanksgiving celebrations next week, I may not get a new entry written until the following week. If I don't write, I hope that you all have a safe, enjoyable Thanksgiving holiday!
Good Health to All!
ScottW
Wednesday, November 7, 2018
Post-Transplant Update: 07 November 2018
This post is a little past due, but I have been busy running errands that last couple of days leaving me little time to sit in front of my computer to type this up. So...
The Renal Ultrasound I had last Thursday came back showing no additional narrowing of the renal artery. This means that those recent trends in weight, BP and urinary output are unrelated to any blood flow issues to the kidney. So, no angiogram in the foreseeable future (this could certainly change though if the doctors want a better look).
For the moment, I am awaiting word on how the doctors want to proceed from here.
Hopefully, I will hear a plan soon.
There were no labs this week, so there is obviously nothing to report on this front.
Ever since our recent move, I have been trying to get out on walks as much as I can. At first, they were few and far between as I was recovering from the move, then wrapped up getting boxes emptied and things put away throughout the house.
About two weeks ago, I decided to walk to get the mail--about 100 yards in each direction, with the return up a slight grade. In the evening, my wife and I started doing a loop of about 4/10ths of a mile. This was up a steep hill for half, then down a long hill, and winding back to our house up that same slight grade I mentioned earlier. We did this walk about every other evening. It was exhausting, and I had to use my cane...a lot; but we did those walks.
This week (on Monday), I decided to walk the same loop during the day by myself. Yes, I still have to use the cane on the uphill sections, but I hold it on the downhill and flat sections. What brought about this sudden change was the thought that "I just need to start walking every day, and stop letting tiredness get in the way." So, I did that first daily walk on Monday, and have done it three days in a row now. Such a thought pattern is not new to me. Before I had the kidney disease evidence itself, there was nothing that held me back from getting in the exercise I needed. Having that thought hit me on Monday was a terrific reminder that, when I am able, I never let anything stand in my way when it comes top getting exercise. So, I am now more solidly on my way!
Next, let me talk about something I haven't mentioned in a while...the neuropathy in my feet. Though still present, I continues to very slowly improve. Some days are still better than others, but the overall improvement continues. I'm still avoiding shoes...and socks; opting instead for my Tiva sandals. Plus, I still sleep at night with my feet uncovered most of the time. However, the overall lessening is somewhere around 20%. It is only that high because I still cannot feel my feet at all. If I could, the improvement would likely be around 35-40%.
The headaches this past week have been up and down--a nice change from the last two months! I have gone from taking no meds...even Tylenol--for most of a day, to using T3's and even the stronger stuff. I have been using the NTI devices about the same as usual, so that is not a factor. Whatever the cause of this recent headache trend, I am NOT complaining one bit!
In regards to each of the last two subjects, I am hoping to get back to having weekly acupuncture to help with the headaches as well as [possibly] the neuropathy. I think that I have mentioned before how much acupuncture has benefited me in the past. With the headaches, I know that this ancient technique will help. With the neuropathy, I am hoping it will help to reduce the pain, and start calming those nerves down and getting them to communicate properly.
**I just received a call from one of the Clinic doctors about moving forward. Here's the initial plan:
I will be taking 40 mg of Lasix every morning for the next four days. As always, I'll track my weight and vitals. On Monday I am to speak with the same doctor to review how this went. At that point, we'll have a better picture of how to proceed.
In the meantime, if a single day's weight loss is greater than three pounds, I am to discontinue the Lasix for the next day.
With this plan, I need to be sure to increase my fluid intake (to 3.5-4 L/day) in order to avoid dehydration and excessive muscle cramps. I'll start that tomorrow morning, as well.
I think that I'll stop here for today. It is getting later in the day, and I need to get started on cooking dinner.
Next week I will update you on the Lasix thing, as well as the latest labs and anything new for getting my kidney functioning as best as possible.
Until then, have a terrific weekend, and keep yourself safe!
Good Health to All!
ScottW
The Renal Ultrasound I had last Thursday came back showing no additional narrowing of the renal artery. This means that those recent trends in weight, BP and urinary output are unrelated to any blood flow issues to the kidney. So, no angiogram in the foreseeable future (this could certainly change though if the doctors want a better look).
For the moment, I am awaiting word on how the doctors want to proceed from here.
Hopefully, I will hear a plan soon.
There were no labs this week, so there is obviously nothing to report on this front.
Ever since our recent move, I have been trying to get out on walks as much as I can. At first, they were few and far between as I was recovering from the move, then wrapped up getting boxes emptied and things put away throughout the house.
About two weeks ago, I decided to walk to get the mail--about 100 yards in each direction, with the return up a slight grade. In the evening, my wife and I started doing a loop of about 4/10ths of a mile. This was up a steep hill for half, then down a long hill, and winding back to our house up that same slight grade I mentioned earlier. We did this walk about every other evening. It was exhausting, and I had to use my cane...a lot; but we did those walks.
This week (on Monday), I decided to walk the same loop during the day by myself. Yes, I still have to use the cane on the uphill sections, but I hold it on the downhill and flat sections. What brought about this sudden change was the thought that "I just need to start walking every day, and stop letting tiredness get in the way." So, I did that first daily walk on Monday, and have done it three days in a row now. Such a thought pattern is not new to me. Before I had the kidney disease evidence itself, there was nothing that held me back from getting in the exercise I needed. Having that thought hit me on Monday was a terrific reminder that, when I am able, I never let anything stand in my way when it comes top getting exercise. So, I am now more solidly on my way!
Next, let me talk about something I haven't mentioned in a while...the neuropathy in my feet. Though still present, I continues to very slowly improve. Some days are still better than others, but the overall improvement continues. I'm still avoiding shoes...and socks; opting instead for my Tiva sandals. Plus, I still sleep at night with my feet uncovered most of the time. However, the overall lessening is somewhere around 20%. It is only that high because I still cannot feel my feet at all. If I could, the improvement would likely be around 35-40%.
The headaches this past week have been up and down--a nice change from the last two months! I have gone from taking no meds...even Tylenol--for most of a day, to using T3's and even the stronger stuff. I have been using the NTI devices about the same as usual, so that is not a factor. Whatever the cause of this recent headache trend, I am NOT complaining one bit!
In regards to each of the last two subjects, I am hoping to get back to having weekly acupuncture to help with the headaches as well as [possibly] the neuropathy. I think that I have mentioned before how much acupuncture has benefited me in the past. With the headaches, I know that this ancient technique will help. With the neuropathy, I am hoping it will help to reduce the pain, and start calming those nerves down and getting them to communicate properly.
**I just received a call from one of the Clinic doctors about moving forward. Here's the initial plan:
I will be taking 40 mg of Lasix every morning for the next four days. As always, I'll track my weight and vitals. On Monday I am to speak with the same doctor to review how this went. At that point, we'll have a better picture of how to proceed.
In the meantime, if a single day's weight loss is greater than three pounds, I am to discontinue the Lasix for the next day.
With this plan, I need to be sure to increase my fluid intake (to 3.5-4 L/day) in order to avoid dehydration and excessive muscle cramps. I'll start that tomorrow morning, as well.
I think that I'll stop here for today. It is getting later in the day, and I need to get started on cooking dinner.
Next week I will update you on the Lasix thing, as well as the latest labs and anything new for getting my kidney functioning as best as possible.
Until then, have a terrific weekend, and keep yourself safe!
Good Health to All!
ScottW
Wednesday, October 31, 2018
Post-Transplant Update: 31 October 2018
Yesterday was a busy one.
First, let's take a look at my weights and BP over the past week...
My weight has been fairly steady due to my self-imposed limit on fluid intake of around 2.5 Liters per day. I started the last week at 119.1 Kg, fell down to 118.1 Kg, then rose again to 119.4 yesterday. This morning, I was at 119.1 Kg once again.
Also, urine output has gone hand in hand with my weight loss. On the days I void fluids regularly, I have to pee every two hours, like clockwork. This includes when I sleep. This is also on days that I lose fluid weight.
On the days I gain weight, I am voiding fluid between every 3-5 hours, and only awaken one, maybe two times at night.
Though I had planned to do a 24-hour urine draw, on the day that was to happen, I was feeling lousy, and just didn't get a single output measured.
With the blood pressures, I have been using the Clonidine (BP med) almost every day both day and night. Despite this effort, my A.M. pressures have ranged from 127 (systolic) to 148. Diastolic readings and pulses are acceptable. The P.M. pressures range from 137 (systolic) to 165. The evening diastolics are high and range from 75-100. Pulses are good.
Next, my latest visit with the Kidney Clinic doctors happened just yesterday morning. They listened to my concerns about the recent trends in the BP, Weight and Urine output inconsistency, and they agreed that this exact set of trends led up to the occluded renal artery. So, I am scheduled to do a Renal Ultrasound tomorrow morning. I will give you the results when I get them.
The doctors also agreed that a Renal Angiogram with balloon expansion of the artery is likely. They want to get ahead of a probable growing occlusion before it becomes critical; and I couldn't agree more! No more hospitalizations for a while.
Also during the Clinic visit, my intake of Sodium Bicarb was reduced to 2 tablets (325 mg ea.) twice each day--down from 3 tabs 2x/day. All other meds are staying as established.
The doctors were also pleased overall with my latest labs. Let's look at those...
30 Oct 18 Labs
*Creat: 2.45 (+0.08) Still settling. (The rise could be due to suspected renal artery occlusion)
*HCT: 32.9 (-1.3) Low
*Hemo: 10.1 (-0.3) Acceptable
*Lymph: 2.8 (-5.6) Extremely Low
*Lymph ABS: 0.2 (-0.4) Extremely Low
*Neut: 81.1 (+2.0) Very High
*Neut ABS: 5.2 (-0.1) IR
*RBC: 3.58 (-0.14) Very Low
*WBC: 6.5 (-0.2) IR
*BUN: 43 (+9) Extremely High (Again, possibly due to artery)
*CA: 10.0 (-0.1) IR
*GFR: 29 (-1) Extremely Low
*Gluc: 95
*K+: 4.5 (-0.1) IR
*NA+: 141 (+1) IR
*Prot: 6.8 (-0.3) IR
*MG: 2.3 (-0.3) IR
*Phos: 3.5 (+0.1) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
While the Hematocrit, RBC's and Hemoglobin are fairly steady, I am only highlighting the Lymphocytes. Once more, we saw a rise last labs, and another drop this time. The Lymphocytes should start to settle into more of a stable range in the near future. We are already seven months post-rejection episode (of the six to nine month recovery for labs), plus the probable renal artery opening should combine to result in helping this to stabilize soon.
Also, the doctors were absolutely thrilled that I am going on a cruise at the end of the year! They have zero reservations aside from being sure I am as hygienic as possible.
What else...
The headaches continue. I have had to use stronger meds twice this past week in order to knock down the pain for a few hours. The breaks from the intense pain were nice. Aside from those two exceptions, the TMD pain has been constant; day and night. I am somewhat managing to keep the headaches in check with T3 and Excedrin. The caffeine in Excedrin helps to 'potentiate' the T3 so that the pain med works better. I try to stick with 1-T3 and 1-Excedrin at a time as I am limited to 3,000 mg of Tylenol per day (for the health of the kidney). Sometimes, I must use a second T3 to get the pain under control.
Next, I had my latest Belatacept infusion yesterday afternoon. The cannulation was excellent, and the med delivered without a hitch. So far I have had zero appreciable side effects. Hopefully, this stays the same. My next infusion will be on 27 November.
As I go about my daily routine, I try to be a tad more active from day to day. I am doing the stairs in our new place numerous times each day, and I now rarely hold the railing whether going up or down. Plus, my wife and I are walking a circuit of 4/10's of a mile 3-4 times each week. On the uphill I am still using the cane; but on the downhills or flats, I walk without the cane. The longer we do the walks, the stronger I will get, and the cane will soon be unneeded.
I only had one bad day this last week when I just felt off all day. Though I do not know why I felt like this, I took two naps of 1.5-3 hours each, and had a bout of diarrhea. When I awoke the next day, I felt better.
That's all I have for now. IF the results from the ultrasound [tomorrow] come back quickly, I will report that below. If not, I will post them on my next blog.
Until then...
Good Health to All!
ScottW
01 Nov: The Renal Ultrasound went well. Of course, the tech could not say what they saw, so I know nothing. I did, however, call my Transplant Coordinator to inform her that the test was completed. I might know the results tomorrow, or next week.
First, let's take a look at my weights and BP over the past week...
My weight has been fairly steady due to my self-imposed limit on fluid intake of around 2.5 Liters per day. I started the last week at 119.1 Kg, fell down to 118.1 Kg, then rose again to 119.4 yesterday. This morning, I was at 119.1 Kg once again.
Also, urine output has gone hand in hand with my weight loss. On the days I void fluids regularly, I have to pee every two hours, like clockwork. This includes when I sleep. This is also on days that I lose fluid weight.
On the days I gain weight, I am voiding fluid between every 3-5 hours, and only awaken one, maybe two times at night.
Though I had planned to do a 24-hour urine draw, on the day that was to happen, I was feeling lousy, and just didn't get a single output measured.
With the blood pressures, I have been using the Clonidine (BP med) almost every day both day and night. Despite this effort, my A.M. pressures have ranged from 127 (systolic) to 148. Diastolic readings and pulses are acceptable. The P.M. pressures range from 137 (systolic) to 165. The evening diastolics are high and range from 75-100. Pulses are good.
Next, my latest visit with the Kidney Clinic doctors happened just yesterday morning. They listened to my concerns about the recent trends in the BP, Weight and Urine output inconsistency, and they agreed that this exact set of trends led up to the occluded renal artery. So, I am scheduled to do a Renal Ultrasound tomorrow morning. I will give you the results when I get them.
The doctors also agreed that a Renal Angiogram with balloon expansion of the artery is likely. They want to get ahead of a probable growing occlusion before it becomes critical; and I couldn't agree more! No more hospitalizations for a while.
Also during the Clinic visit, my intake of Sodium Bicarb was reduced to 2 tablets (325 mg ea.) twice each day--down from 3 tabs 2x/day. All other meds are staying as established.
The doctors were also pleased overall with my latest labs. Let's look at those...
30 Oct 18 Labs
*Creat: 2.45 (+0.08) Still settling. (The rise could be due to suspected renal artery occlusion)
*HCT: 32.9 (-1.3) Low
*Hemo: 10.1 (-0.3) Acceptable
*Lymph: 2.8 (-5.6) Extremely Low
*Lymph ABS: 0.2 (-0.4) Extremely Low
*Neut: 81.1 (+2.0) Very High
*Neut ABS: 5.2 (-0.1) IR
*RBC: 3.58 (-0.14) Very Low
*WBC: 6.5 (-0.2) IR
*BUN: 43 (+9) Extremely High (Again, possibly due to artery)
*CA: 10.0 (-0.1) IR
*GFR: 29 (-1) Extremely Low
*Gluc: 95
*K+: 4.5 (-0.1) IR
*NA+: 141 (+1) IR
*Prot: 6.8 (-0.3) IR
*MG: 2.3 (-0.3) IR
*Phos: 3.5 (+0.1) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
While the Hematocrit, RBC's and Hemoglobin are fairly steady, I am only highlighting the Lymphocytes. Once more, we saw a rise last labs, and another drop this time. The Lymphocytes should start to settle into more of a stable range in the near future. We are already seven months post-rejection episode (of the six to nine month recovery for labs), plus the probable renal artery opening should combine to result in helping this to stabilize soon.
Also, the doctors were absolutely thrilled that I am going on a cruise at the end of the year! They have zero reservations aside from being sure I am as hygienic as possible.
What else...
The headaches continue. I have had to use stronger meds twice this past week in order to knock down the pain for a few hours. The breaks from the intense pain were nice. Aside from those two exceptions, the TMD pain has been constant; day and night. I am somewhat managing to keep the headaches in check with T3 and Excedrin. The caffeine in Excedrin helps to 'potentiate' the T3 so that the pain med works better. I try to stick with 1-T3 and 1-Excedrin at a time as I am limited to 3,000 mg of Tylenol per day (for the health of the kidney). Sometimes, I must use a second T3 to get the pain under control.
Next, I had my latest Belatacept infusion yesterday afternoon. The cannulation was excellent, and the med delivered without a hitch. So far I have had zero appreciable side effects. Hopefully, this stays the same. My next infusion will be on 27 November.
As I go about my daily routine, I try to be a tad more active from day to day. I am doing the stairs in our new place numerous times each day, and I now rarely hold the railing whether going up or down. Plus, my wife and I are walking a circuit of 4/10's of a mile 3-4 times each week. On the uphill I am still using the cane; but on the downhills or flats, I walk without the cane. The longer we do the walks, the stronger I will get, and the cane will soon be unneeded.
I only had one bad day this last week when I just felt off all day. Though I do not know why I felt like this, I took two naps of 1.5-3 hours each, and had a bout of diarrhea. When I awoke the next day, I felt better.
That's all I have for now. IF the results from the ultrasound [tomorrow] come back quickly, I will report that below. If not, I will post them on my next blog.
Until then...
Good Health to All!
ScottW
01 Nov: The Renal Ultrasound went well. Of course, the tech could not say what they saw, so I know nothing. I did, however, call my Transplant Coordinator to inform her that the test was completed. I might know the results tomorrow, or next week.
Monday, October 22, 2018
Post-Transplant Update: 21 October 2018
I am late getting this update written simply because I was finishing unpacking from the move, and recovering from a much greater than normal daily activity level.
It has been good for me; doing this move. Though exhausting, the constant activity has helped kick start my body a little, and I am getting through each day with more energy than I have over the past year. This is definitely a good thing!
I forgot to mention in my last post that I had my scheduled Belatacept infusion on October 2nd. Once again, there were very few appreciable side effects.
Unfortunately, both my weight and my BP have been trending upward over the past two weeks. As of this morning, my weight stood at 119.1 KG (up from 117.1 KG four days ago). As far as my blood pressures, the A.M reading has elevated from the mid-110's (Diastolic) to mid-120's, and I am now struggling to have the readings be in the high 120's to low 140's.
The P.M. readings are worse...much worse. Previously these ranged from the 120's (Diastolic) to the low 130's. Now, I am struggling to get readings lower than the high 140's.
Despite these BP readings, my pulses have been fairly consistent; ranging from the low 60's to the mid 70's. Not bad.
Now, I have seen this BP trend before and, not knowing what I was seeing, I ended up in the hospital last Fall for what was assumed to be a rejection. Instead, it was the occluded renal artery. After the artery was opened, the doctors told me that it might need re-opening every once in a while. Last Spring during my full rejection episode, a follow-up renal Angiogram showed a 15% occlusion of the artery. As of now, this recent BP trend is looking exactly like last years' and I am going to cut it off before things become acute.
I have my next Kidney Clinic appointment on the 30th. I will keep a close eye on the BP until then. IF things suddenly spike extremely high, I will call the clinic immediately. If they maintain as they are now, I will wait. In either event, I anticipate a possible Renal Ultrasound as well as a Renal Angiogram with balloon expansion of the renal artery. I will definitely keep you updated on this one!
Now, on to the latest labs...
16 Oct 18 Labs:
*Creat: 2.37 (+0.03) Final average yet to be found.
*HCT: 34.2 (+5.4) Low
*Hemo: 10.4 (+1.4) IR
*Lymph: 8.4 (-6.1) Very Low
*Lymph ABS: 0.6 (+0.2) Very Low
*Neut: 79.1 (+12.4) Extremely High
*Neut ABS: 5.3 (+3.5) IR
*RBC: 3.72 (+0.56) Very Low
*WBC: 6.7 (+3.9) IR
*BUN: 34 (NC) Very High
*CA: 10.1 (+0.5) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 101
*K+: 4.6 (+0.1) IR
*NA+: 140 (NC) IR
*Prot: 7.1 (+0.5) IR
*MG: 2.6 (+0.5) IR
*BK: Not Checked
*CMV: Not Detected
NC= No Change IR= In Range
Once again I am highlighting the Hematocrit, Hemoglobin and Red Blood Cells in a follow-up to the Aranesp shot I had earlier in the month. All these numbers rose as they should have. Though still on the HCT and RBC, the rebound was nice to see; especially considering I received only a single blood booster.
Also, the White Blood Count came back nicely from two weeks ago. It had been in dangerous territory, so rising as it did makes my brain relax a lot.
Lastly, the Lymphocytes did exactly as I anticipated and dropped hugely after yet another significant rise. Seeing that I am now over six months post-rejection, this number should soon begin to settle into a normal range...should. As always, time will tell.
I don't recall if I mentioned this, but my wife and I are scheduled to go on a seven day Western Caribbean cruise in late-December. Because of this, I am trying every day to become more active in order to build as much stamina as I can over the next two+ months. I want to be able to enjoy the cruise as much as possible, and to do that I need strength and the ability to walk more than a couple of hundred yards.
Next, the TMD headaches. Let's see...the best way to put this is probably ever-present, never-ending. I have not had any sort of a break in the headaches at all this month. No matter how much I work on it, he jaw has become so stressed that it just isn't releasing the tension. For the most part I have been able to keep the headaches from exploding into unmanageable territory...keeping them in merely painful. At least I have been able to achieve that much. A small victory on the TMD front is a victory nonetheless.
My next Belatacept infusion is also on the 30th of this month. Assuming the Kidney Clinic does not hold me over for any renal tests, the infusion will proceed as planned. On the other hand, if the clinic orders tests, I actually have a three day window in which to have the infusion. In that case, I will call to reschedule the Belatacept immediately.
In other news, the abdominal numbness I've had since the hernia repair last November has been slowly receding. I am starting to feel tenderness over my lower abdomen for the first time. This is not pain per se, buy just a tenderness to pressure on the skin and irritation from anything rubbing the skin. I will often forget to not lean against something with my lower abdomen, then suddenly realize how tender and slightly painful the area is. So, I try to be conscientious about how I am leaning into things, especially when cooking.
As far as things rubbing on the skin, there really isn't too much I can do other than wear as loose of clothing as I can. At least, that's all I've been able to figure out thus far.
My appetite remains consummate with my activity level, which is very good. My fluid intake is still between 2.5L-3L every day. With my recent weight gain, I am trying to keep that intake closer to 2.5L since I am obviously not voiding everything I drink. I am planning to do a 24-hour urine draw to determine the disparity between my fluid intake and output. I will try to remember to note that in my next blog.
And that is all I have for now.
I will let you know how things go regarding my BP and weight rise.
Until then, enjoy every day and keep looking towards a bright tomorrow!
Good Health to All!
ScottW
It has been good for me; doing this move. Though exhausting, the constant activity has helped kick start my body a little, and I am getting through each day with more energy than I have over the past year. This is definitely a good thing!
I forgot to mention in my last post that I had my scheduled Belatacept infusion on October 2nd. Once again, there were very few appreciable side effects.
Unfortunately, both my weight and my BP have been trending upward over the past two weeks. As of this morning, my weight stood at 119.1 KG (up from 117.1 KG four days ago). As far as my blood pressures, the A.M reading has elevated from the mid-110's (Diastolic) to mid-120's, and I am now struggling to have the readings be in the high 120's to low 140's.
The P.M. readings are worse...much worse. Previously these ranged from the 120's (Diastolic) to the low 130's. Now, I am struggling to get readings lower than the high 140's.
Despite these BP readings, my pulses have been fairly consistent; ranging from the low 60's to the mid 70's. Not bad.
Now, I have seen this BP trend before and, not knowing what I was seeing, I ended up in the hospital last Fall for what was assumed to be a rejection. Instead, it was the occluded renal artery. After the artery was opened, the doctors told me that it might need re-opening every once in a while. Last Spring during my full rejection episode, a follow-up renal Angiogram showed a 15% occlusion of the artery. As of now, this recent BP trend is looking exactly like last years' and I am going to cut it off before things become acute.
I have my next Kidney Clinic appointment on the 30th. I will keep a close eye on the BP until then. IF things suddenly spike extremely high, I will call the clinic immediately. If they maintain as they are now, I will wait. In either event, I anticipate a possible Renal Ultrasound as well as a Renal Angiogram with balloon expansion of the renal artery. I will definitely keep you updated on this one!
Now, on to the latest labs...
16 Oct 18 Labs:
*Creat: 2.37 (+0.03) Final average yet to be found.
*HCT: 34.2 (+5.4) Low
*Hemo: 10.4 (+1.4) IR
*Lymph: 8.4 (-6.1) Very Low
*Lymph ABS: 0.6 (+0.2) Very Low
*Neut: 79.1 (+12.4) Extremely High
*Neut ABS: 5.3 (+3.5) IR
*RBC: 3.72 (+0.56) Very Low
*WBC: 6.7 (+3.9) IR
*BUN: 34 (NC) Very High
*CA: 10.1 (+0.5) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 101
*K+: 4.6 (+0.1) IR
*NA+: 140 (NC) IR
*Prot: 7.1 (+0.5) IR
*MG: 2.6 (+0.5) IR
*BK: Not Checked
*CMV: Not Detected
NC= No Change IR= In Range
Once again I am highlighting the Hematocrit, Hemoglobin and Red Blood Cells in a follow-up to the Aranesp shot I had earlier in the month. All these numbers rose as they should have. Though still on the HCT and RBC, the rebound was nice to see; especially considering I received only a single blood booster.
Also, the White Blood Count came back nicely from two weeks ago. It had been in dangerous territory, so rising as it did makes my brain relax a lot.
Lastly, the Lymphocytes did exactly as I anticipated and dropped hugely after yet another significant rise. Seeing that I am now over six months post-rejection, this number should soon begin to settle into a normal range...should. As always, time will tell.
I don't recall if I mentioned this, but my wife and I are scheduled to go on a seven day Western Caribbean cruise in late-December. Because of this, I am trying every day to become more active in order to build as much stamina as I can over the next two+ months. I want to be able to enjoy the cruise as much as possible, and to do that I need strength and the ability to walk more than a couple of hundred yards.
Next, the TMD headaches. Let's see...the best way to put this is probably ever-present, never-ending. I have not had any sort of a break in the headaches at all this month. No matter how much I work on it, he jaw has become so stressed that it just isn't releasing the tension. For the most part I have been able to keep the headaches from exploding into unmanageable territory...keeping them in merely painful. At least I have been able to achieve that much. A small victory on the TMD front is a victory nonetheless.
My next Belatacept infusion is also on the 30th of this month. Assuming the Kidney Clinic does not hold me over for any renal tests, the infusion will proceed as planned. On the other hand, if the clinic orders tests, I actually have a three day window in which to have the infusion. In that case, I will call to reschedule the Belatacept immediately.
In other news, the abdominal numbness I've had since the hernia repair last November has been slowly receding. I am starting to feel tenderness over my lower abdomen for the first time. This is not pain per se, buy just a tenderness to pressure on the skin and irritation from anything rubbing the skin. I will often forget to not lean against something with my lower abdomen, then suddenly realize how tender and slightly painful the area is. So, I try to be conscientious about how I am leaning into things, especially when cooking.
As far as things rubbing on the skin, there really isn't too much I can do other than wear as loose of clothing as I can. At least, that's all I've been able to figure out thus far.
My appetite remains consummate with my activity level, which is very good. My fluid intake is still between 2.5L-3L every day. With my recent weight gain, I am trying to keep that intake closer to 2.5L since I am obviously not voiding everything I drink. I am planning to do a 24-hour urine draw to determine the disparity between my fluid intake and output. I will try to remember to note that in my next blog.
And that is all I have for now.
I will let you know how things go regarding my BP and weight rise.
Until then, enjoy every day and keep looking towards a bright tomorrow!
Good Health to All!
ScottW
Wednesday, October 10, 2018
Post-Transplant Update: 09 October 2018
Even though we moved in on the 29th of September, I have only just now gotten my office put back together enough to write a new entry. Thanks for hanging in there until I was able to type this up!
As expected, our move was exhausting! I have no idea where what little energy I was able to summon came from, but it is done. Plus, I have slowly unpacked the past week plus, and most things have been put away.
First off, let's go over my labs that were drawn last week:
02 Oct 18 Labs:
*Creat: 2.32 (-0.05) Dropping
*Hct: 28.8 (-2.7) Very Low...again
*Hemo: 9.0 (-1.1) Very Low...again
*Lymph: 14.5 (+11.5) Low
*Lymph ABS: 0.4 (+0.2) Very Low
*Neut: 66.7 (-15.6) High
*Neut ABS: 1.8 (-2.8) IR
*RBC: 3.16 (-0.34) Very Low...again
*WBC: 2.8 (-2.6) Extremely Low
*BUN: 34 (-1) Very High
*CA: 9.6 (-0.4) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 111
*K+: 4.5 (+0.2) IR
*NA+: 140 (NC) IR
*Prot: 6.6 (-0.4) IR
*MG: 2.1 (-0.2) IR
*Phos: 2.5 (-0.4) IR
*BK: Not Detected
*CMV: Not Detected
NC= No Change IR= In Range
The most troubling information in the labs was the drops in hematocrit, hemoglobin and red blood cells. This of course means that once again, my kidney is not telling my bone marrow to produce RBC's and hemoglobin. On learning this, I immediately called my coordinator to relay the news. She returned my call after speaking with the clinic doctors. They ordered another shot of Aranesp, which I did on Thursday of last week. Hopefully, the Aranesp will do its job and kick start the RBC productions once more. As I am NOT doing labs this week, I will find out next week the result of the shot.
Also, my Lymphocytes took an 11.5 jump. As before with these huge jumps, I am not expecting it to stay at this level.
With all the stress and exertion involved in moving a household, my headaches have been terrible; as you might expect. There has been LOTS of TMD involvement, and my jaw is clunking really hard! Despite my efforts, the headaches have not reduced. As I am done with the major unpacking, I should be able to better focus on reducing the TMD symptoms, and possibly the headaches.
My body is still trying to recover from the past month, so I am pretty tired most of the time. On top of this, the low hematocrit certainly doesn't help. Hopefully, the Aranesp will do its job and return all three labs back to acceptable ranges.
That's all I have at this time. I will get another entry done after my labs next Tuesday.
Until then,
Good Health to All!
ScottW
As expected, our move was exhausting! I have no idea where what little energy I was able to summon came from, but it is done. Plus, I have slowly unpacked the past week plus, and most things have been put away.
First off, let's go over my labs that were drawn last week:
02 Oct 18 Labs:
*Creat: 2.32 (-0.05) Dropping
*Hct: 28.8 (-2.7) Very Low...again
*Hemo: 9.0 (-1.1) Very Low...again
*Lymph: 14.5 (+11.5) Low
*Lymph ABS: 0.4 (+0.2) Very Low
*Neut: 66.7 (-15.6) High
*Neut ABS: 1.8 (-2.8) IR
*RBC: 3.16 (-0.34) Very Low...again
*WBC: 2.8 (-2.6) Extremely Low
*BUN: 34 (-1) Very High
*CA: 9.6 (-0.4) IR
*GFR: 30 (NC) Extremely Low
*Gluc: 111
*K+: 4.5 (+0.2) IR
*NA+: 140 (NC) IR
*Prot: 6.6 (-0.4) IR
*MG: 2.1 (-0.2) IR
*Phos: 2.5 (-0.4) IR
*BK: Not Detected
*CMV: Not Detected
NC= No Change IR= In Range
The most troubling information in the labs was the drops in hematocrit, hemoglobin and red blood cells. This of course means that once again, my kidney is not telling my bone marrow to produce RBC's and hemoglobin. On learning this, I immediately called my coordinator to relay the news. She returned my call after speaking with the clinic doctors. They ordered another shot of Aranesp, which I did on Thursday of last week. Hopefully, the Aranesp will do its job and kick start the RBC productions once more. As I am NOT doing labs this week, I will find out next week the result of the shot.
Also, my Lymphocytes took an 11.5 jump. As before with these huge jumps, I am not expecting it to stay at this level.
With all the stress and exertion involved in moving a household, my headaches have been terrible; as you might expect. There has been LOTS of TMD involvement, and my jaw is clunking really hard! Despite my efforts, the headaches have not reduced. As I am done with the major unpacking, I should be able to better focus on reducing the TMD symptoms, and possibly the headaches.
My body is still trying to recover from the past month, so I am pretty tired most of the time. On top of this, the low hematocrit certainly doesn't help. Hopefully, the Aranesp will do its job and return all three labs back to acceptable ranges.
That's all I have at this time. I will get another entry done after my labs next Tuesday.
Until then,
Good Health to All!
ScottW
Monday, September 24, 2018
Post-Transplant Update: 24 September 2018
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
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
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
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