OK.
First, that AlloSure test showed that I have nearly zero (0.12%) of antibodies that are trying to fight the kidney. After three years of a transplant, this is completely unheard of!
So, no antibody rejection.
Here's the current plan...
My daily intake of Torsemide (diuretic) will be increased for one week, rising to 80 mg every day. Next Thursday I will do my next set of labs, at which time the doctors will re-examine everything.
Other than that, there is no current plan. The labs will dictate how we move forward.
Meanwhile, I will continue drinking three liters of water every day, eat properly, and exercise as I am able; which for me right now, is walking.
Until late next week, I won't write another entry, unless something untoward happens.
So until then, keep smiling, stay healthy and practice the required social distancing so that everyone around you has the best chance to avoid the Wuhan Virus.
Good Health to All!
ScottW
Thursday, April 23, 2020
Post-Transplant Update: 23 April 2020
The course of Prednisone went well.
Three days of 60 mg per day was easy to do. As predicted, my Blood Glucose Level (BGL) spiked because of the steroid. It ranged anywhere between 121 and 254. Within a day after the end of taking the Prednisone, my BGL had pretty much returned to normal. The only except thus far was last night just before bedtime. My BGL was at 144, which required just 1 Unit of Lantus (Insulin). I will check again throughout the next day or two just to be sure my BGL has fully returned to normal.
While on the Prednisone, I noticed all the usual side effects that accompany this anti-inflammatory steroid: Aching bones, restless legs, doing a lot of snacking, excessive thirst and slight weight gain. Aside from the aching bones, all other side effects disappeared once the med was done.
Over the past week my blood pressures and pulses have all been way out of whack. My pulses have been averaging in the high 70's, while my A.M. BP's have ranged from the high 130's systolic to the low 150's, and the evening numbers have ranged between the high 140's systolic to the mid 180's.
Those numbers are all extremely concerning!
I had labs drawn yesterday, and they are a mess.
22 April 20 Labs:
*Creat: 2.71 (-0.34) *This is great!
*HCT: 37.3 (-0.8) IR
*Hemo: 11.7 (-0.4) IR
*Lymph: 13.9 (+0.2) Low
*Lymph ABS: 1.4 (+0.6) High
*Neut: 79.3 (+3.3) High
*Neut ABS: 8.2 (+2.6) High
*RBC: 4.18 (-0.8) Very Low
*WBC: 10.3 (+3.0) IR, but very nearly out of the proper range.
*BUN: 59 (+20) Extremely High
*CA: 9.4 (+0.4) IR
*GFR: 25 (+3) Extremely Low
*Gluc: 94
*K+: 4.0 (-0.4) IR
*NA+: (138 (+1) IR
*MG: 2.1 (+0.1) IR
*Phos: 4.0 (-0.1) IR
*NC= No Change IR= In Range
*The U/A was almost the same with small variances in the pH, Mucus and Specific Gravity.
The Creatinine dropping was a nice surprise, as this was unexpected. However, that drop is tempered with the reality of the Lymph ABS, WBC, BUN and GFR numbers.
I have not seen the Lymph ABS that high before--at least that I can recall.
The White Count was way higher than I had anticipated because of the extra Myfortic I am taking, plus the Belatacept infusion last week.
At 59, the BUN took a massive jump in the wrong direction! This is definitely not a good sign.
Even though the GFR rose slightly, it remains well below the minimum threshold of the desired range.
Like I said, my labs are a mess.
I figured that I would not hear from the Transplant Clinic doctors yesterday simply because Wednesday is one of the Clinics' main follow-up days for transplant patients meeting their doctors. I fully expect to hear back sometime today.
Until I do, there isn't much more that I can do except to wait, and try to avoid getting too worried about anything.
When I know the next step, I will update this blog as soon as I am able; even thought that may be brief.
So, now I await a phone call...
Good Health to All!
ScottW
Monday, April 20, 2020
Post-Transplant Update:20 April 2020
My BK test came back Negative...as expected.
So yesterday, I started the temporary Prednisone regimen of 60 mg 1x/day for three consecutive days. I will then do my next lab draw on Wednesday morning. Those results will give us a good picture on how to proceed next.
Also, with taking a higher dose of Prednisone, I had the thought that I needed to check my blood sugar throughout each day, as Prednisone (a parabolic steroid) "induces insulin resistance, causing insulin, either that produced by your body or injected insulin, to become less effective. This results in glucose building up in the blood. Prednisone also triggers your liver to release extra glucose, which when combined with insulin resistance, can lead to very high blood glucose levels..."
So, I started that yesterday morning to get my baseline before starting the med. Here are my initial readings:
AM (pre-dosing) BGL: 98
Lunch BGL: 185 Insulin Injected: 2 U
Dinner BGL: 189 Insulin Injected: 2 U
Late BGL: 205 Insulin Injected: 3 U
*BGL= Blood Glucose Level U= Units of Insulin
I will continue this through at least Wednesday morning , or until my Blood Glucose Levels settle back to normal.
With my BGL up, I have had non-TMD headaches suddenly increase. They are quite painful, and difficult to control.
As I won't know much more until Wednesday, I will wait until then to do my next entry.
So, stay safe, keep your distancing protocols whenever you are out and about, and keep yourself healthy and strong.
Good Health to All!
ScottW
So yesterday, I started the temporary Prednisone regimen of 60 mg 1x/day for three consecutive days. I will then do my next lab draw on Wednesday morning. Those results will give us a good picture on how to proceed next.
Also, with taking a higher dose of Prednisone, I had the thought that I needed to check my blood sugar throughout each day, as Prednisone (a parabolic steroid) "induces insulin resistance, causing insulin, either that produced by your body or injected insulin, to become less effective. This results in glucose building up in the blood. Prednisone also triggers your liver to release extra glucose, which when combined with insulin resistance, can lead to very high blood glucose levels..."
So, I started that yesterday morning to get my baseline before starting the med. Here are my initial readings:
AM (pre-dosing) BGL: 98
Lunch BGL: 185 Insulin Injected: 2 U
Dinner BGL: 189 Insulin Injected: 2 U
Late BGL: 205 Insulin Injected: 3 U
*BGL= Blood Glucose Level U= Units of Insulin
I will continue this through at least Wednesday morning , or until my Blood Glucose Levels settle back to normal.
With my BGL up, I have had non-TMD headaches suddenly increase. They are quite painful, and difficult to control.
As I won't know much more until Wednesday, I will wait until then to do my next entry.
So, stay safe, keep your distancing protocols whenever you are out and about, and keep yourself healthy and strong.
Good Health to All!
ScottW
Friday, April 17, 2020
Post-Transplant Update: 17 April 2020
OK.
Here's the latest new information...
First, my BK test results are NOT back yet due to the whole Chinese/Corona/Wuhan/CCP virus testing. My test had to be sent to a secondary lab, and the results will not be known until tomorrow.
Meanwhile, the Transplant Clinic doctors ordered a new and experimental blood test called AlloSure to be drawn ASAP. (I am placing info on this test at the bottom of this post) I received a special kit this morning and will take it to the lab today for the blood draw. The lab will use the kit (whatever it is) and send it back to the originating company for analysis. The results, which apparently show the level of rejection in a kidney, should be available by Monday Morning.
Assuming the BK results are negative, I will start a course of 60 mg Prednisone for each of three consecutive days, then do my next full lab draw on Tuesday morning.
Now, depending on the results of the labs and the Allosure, one of two immediate things will happen....
1) The kidney is inflamed, and needs to be calmed down. In this case, I will possibly continue with the Prednisone increase, while simultaneously reducing my daily intake of Myfortic. Labs will be drawn every two weeks for analysis.
2) The tests all show that I am in rejection, and I will immediately be ordered for a renal biopsy, followed by an in-hospital course of Plasmapheresis. If I have to have this done, I will explain what it is and how it is done. For now, a very short explanation is the any antibodies that I carry are filtered out via a dialysis-like machine. The treatment takes three days.
Also, during this time I would get all the paperwork redone for placement on the Transplant List, so that if all efforts to keep the kidney fail, I am already accumulating time of the list.
Lastly, because of my weight fluctuations on the Torsemide vs non-Torsemide day, and the overall gains of weight despite the diuretic, I am to take the Torsemide every single day--for now--and be sure that I drink at least three full liters of water every day. The daily intake of the Torsemide could change once we know all results on Tuesday.
So again, as I stated on my last post, next week is pivotal in how things will be moving forward.
I will keep you updated.
Until then...
Keep yourselves safe from the virus, and stay healthy and strong despite this crisis.
Please, once again keep me in your prayers as I head into this uncertain time.
Good Health to All!
ScottW
Here's the latest new information...
First, my BK test results are NOT back yet due to the whole Chinese/Corona/Wuhan/CCP virus testing. My test had to be sent to a secondary lab, and the results will not be known until tomorrow.
Meanwhile, the Transplant Clinic doctors ordered a new and experimental blood test called AlloSure to be drawn ASAP. (I am placing info on this test at the bottom of this post) I received a special kit this morning and will take it to the lab today for the blood draw. The lab will use the kit (whatever it is) and send it back to the originating company for analysis. The results, which apparently show the level of rejection in a kidney, should be available by Monday Morning.
Assuming the BK results are negative, I will start a course of 60 mg Prednisone for each of three consecutive days, then do my next full lab draw on Tuesday morning.
Now, depending on the results of the labs and the Allosure, one of two immediate things will happen....
1) The kidney is inflamed, and needs to be calmed down. In this case, I will possibly continue with the Prednisone increase, while simultaneously reducing my daily intake of Myfortic. Labs will be drawn every two weeks for analysis.
2) The tests all show that I am in rejection, and I will immediately be ordered for a renal biopsy, followed by an in-hospital course of Plasmapheresis. If I have to have this done, I will explain what it is and how it is done. For now, a very short explanation is the any antibodies that I carry are filtered out via a dialysis-like machine. The treatment takes three days.
Also, during this time I would get all the paperwork redone for placement on the Transplant List, so that if all efforts to keep the kidney fail, I am already accumulating time of the list.
Lastly, because of my weight fluctuations on the Torsemide vs non-Torsemide day, and the overall gains of weight despite the diuretic, I am to take the Torsemide every single day--for now--and be sure that I drink at least three full liters of water every day. The daily intake of the Torsemide could change once we know all results on Tuesday.
So again, as I stated on my last post, next week is pivotal in how things will be moving forward.
I will keep you updated.
Until then...
Keep yourselves safe from the virus, and stay healthy and strong despite this crisis.
Please, once again keep me in your prayers as I head into this uncertain time.
Good Health to All!
ScottW
Test Name
AlloSure® Donor-Derived Cell-Free DNA Test CPT code: 81479
Intended Use
The AlloSure test is intended to
assess the probability of allograft rejection in kidney transplant recipients
with clinical suspicion of rejection and to inform clinical decision-making
about the necessity of renal biopsy in such patients at least two weeks
post-transplant in conjunction with standard clinical assessment.
Indications for Use
AlloSure is indicated for use in
renal transplant patients who are 18 years of age or older and at least 2 weeks
(14 days) post-transplant. Clinical validity of the AlloSure test was
established in single-kidney transplant recipients who were 18 years of age or
older and at least two weeks post-transplant.
Summary and Explanation of the Test
(Principle of the Test)
The AlloSure test is a
clinical-grade, targeted, next generation sequencing (NGS) assay that measures
single-nucleotide polymorphisms (SNPs) to accurately quantify donor-derived
cell-free DNA (dd-cfDNA) in renal transplant recipients without separate
genotyping of either the donor or the recipient. The assay quantifies the
fraction of dd-cfDNA in both unrelated and related donor-recipient pairs.
Blood is collected from the
patient, packaged, and shipped at ambient temperature to CareDx for testing.
dd-cfDNA is measured via targeted amplification and sequencing of a set of
carefully selected and validated SNPs. The AlloSure bioinformatics software
calculates the percent dd-cfDNA in the sample tested and applies the QC cut-off
values. Most AlloSure test results are reported to the ordering physician
within 3 days from blood specimen collection.
**For more information, please
visit www.caredx.com/allosure
*NOTE: the above
address for AlloSure is for the Kidney ONLY; though there are links for other
information.
Monday, April 13, 2020
Post-Transplant Update: 13 April 2020
Well, last week definitely did NOT go as planned.
In my last post I stated that the doctors at the Kidney Clinic had ordered a Renal Angiogram. Unfortunately, the hospital Radiologist wanted to do a Renal Ultrasound before doing an Angiogram in order to rule out Hydronephrosis, which is either water surrounding the kidney, or any inflammation of the kidney itself.
So, I went in on Wednesday for the ultrasound, which ended up ruling out either condition. Then, I was scheduled for the Renal Angiogram on Thursday Afternoon.
The Angiogram started out a bit rocky when the radiologist innervated a nerve on the insertion of the cannula. No, this was NOT negligence on the part of the radiologist; I apparently have a nerve that is in the wrong place.
Anyhow, the nerve hit caused an intense pain deep in my R thigh (the cannula insertion was on the R) that went all the way down to my toes. This pain persisted despite the fact that I was given Fentanyl for the test. The extra pain made the whole test far worse than any other Renal Angiogram I have ever had.
The test showed that there was no additional scar tissue within the Renal Artery. However, the artery had settled into a position that actually looks like a kink in a hose, but which allows for proper perfusion of the kidney. All internal pressures within the artery were in good shape. So, the artery in NOT the answer to this riddle.
My post-test recovery took about four hours, and I was sent home.
The next day--Friday--my post-test recovery was miserable as that leg pain persisted, and the insertion site itself was also quite painful. Plus, because of the pain I endured during the test, my TMD was triggered big time, and I endured a terrible headache all day despite meds.
Then on Saturday, I felt like garbage all day. I'm talking intense nausea, stomach aching, feeling hot despite a 95.9 temperature, continued leg pain and just feeling lousy all over throughout the entire day.
Sunday was better, but I thought it best to avoid food altogether until the evening; even then I ate only a lite dinner.
I awoke today feeling much better.
This morning I did my labs. There is mixed news.
13 April 20 Labs:
*Creat: 3.05 (+0.39 over last week)
*HCT: 38.1 (+2.6) IR
*Hemo: 12.1 (+0.9) High
*Lymph: 11.3 (-5.9) Low (What a surprise! :ol)
*Lymph ABS: 0.8 (-0.1) Low
*Neut: 76.6 (+4.3) High
*Neut ABS: 5.6 (+1.8) IR
*RBC: 4.25 (+0.29) Low
*WBC: 7.3 (+2.0) IR, but way up
*BUN: 39 (NC) Very High
*CA: 9.0 (NC) IR
*GFR: 22 (-1) Extremely Low
*Gluc: 116 (!) That's unusual
*K+: 4.4 (+0.4) IR
*NA+: 137 (-1) IR
*MG: 2.0 (-0.2) IR
*Phos: 4.1 (+0.2) IR
NC= No Change IR= In Range
Urinalysis was exactly the same as last weeks'.
On the 'good' side:
The Hematocrit unexpectedly rose for the second week in a row, and is now solidly in the preferred range.
Accordingly, the Red Count also rose following two weeks of losses. Though still below the desired range, it is nice to see this lab up here once more.
On the 'not-so-good side:
The White Count rose two full points despite the increased Myfortic. This rise could be coincidental as tomorrow (14 April) is my next infusion of Belatacept, and with the kidney already struggling, the lack of Belatacept may be too much for the kidney. Next weeks' labs will be a telling point.
As expected, the Lymphocytes dropped again, but not as far as I'd expected.
Lastly, the Creatinine. Though it is a modest rise overall, the fact that this went above 3.0 again in spite of the increased meds is very concerning to the Transplant doctors.
So, they ordered a test for the BK virus; just to rule that out. I have never had a positive BK result, but it still needs to be addressed. I will do that test tomorrow before my infusion.
Assuming that test comes back as negative, the doctors are looking to try a home-based increase of Prednisone for a few days, then see what my labs are next week. Based on that, I'll either have another med change, get a Renal Biopsy or be admitted to the hospital for a rejection or a rejection episode. So, next week will be pivotal.
What fun! :ol
I will update this entry later this week when I know the BK results and Prednisone regimen.
I hope that you are all staying healthy, strong and doing what is required to keep this Chinese virus from infecting you and your loved ones.
So, until later this week...
Good Health to All!
ScottW
In my last post I stated that the doctors at the Kidney Clinic had ordered a Renal Angiogram. Unfortunately, the hospital Radiologist wanted to do a Renal Ultrasound before doing an Angiogram in order to rule out Hydronephrosis, which is either water surrounding the kidney, or any inflammation of the kidney itself.
So, I went in on Wednesday for the ultrasound, which ended up ruling out either condition. Then, I was scheduled for the Renal Angiogram on Thursday Afternoon.
The Angiogram started out a bit rocky when the radiologist innervated a nerve on the insertion of the cannula. No, this was NOT negligence on the part of the radiologist; I apparently have a nerve that is in the wrong place.
Anyhow, the nerve hit caused an intense pain deep in my R thigh (the cannula insertion was on the R) that went all the way down to my toes. This pain persisted despite the fact that I was given Fentanyl for the test. The extra pain made the whole test far worse than any other Renal Angiogram I have ever had.
The test showed that there was no additional scar tissue within the Renal Artery. However, the artery had settled into a position that actually looks like a kink in a hose, but which allows for proper perfusion of the kidney. All internal pressures within the artery were in good shape. So, the artery in NOT the answer to this riddle.
My post-test recovery took about four hours, and I was sent home.
The next day--Friday--my post-test recovery was miserable as that leg pain persisted, and the insertion site itself was also quite painful. Plus, because of the pain I endured during the test, my TMD was triggered big time, and I endured a terrible headache all day despite meds.
Then on Saturday, I felt like garbage all day. I'm talking intense nausea, stomach aching, feeling hot despite a 95.9 temperature, continued leg pain and just feeling lousy all over throughout the entire day.
Sunday was better, but I thought it best to avoid food altogether until the evening; even then I ate only a lite dinner.
I awoke today feeling much better.
This morning I did my labs. There is mixed news.
13 April 20 Labs:
*Creat: 3.05 (+0.39 over last week)
*HCT: 38.1 (+2.6) IR
*Hemo: 12.1 (+0.9) High
*Lymph: 11.3 (-5.9) Low (What a surprise! :ol)
*Lymph ABS: 0.8 (-0.1) Low
*Neut: 76.6 (+4.3) High
*Neut ABS: 5.6 (+1.8) IR
*RBC: 4.25 (+0.29) Low
*WBC: 7.3 (+2.0) IR, but way up
*BUN: 39 (NC) Very High
*CA: 9.0 (NC) IR
*GFR: 22 (-1) Extremely Low
*Gluc: 116 (!) That's unusual
*K+: 4.4 (+0.4) IR
*NA+: 137 (-1) IR
*MG: 2.0 (-0.2) IR
*Phos: 4.1 (+0.2) IR
NC= No Change IR= In Range
Urinalysis was exactly the same as last weeks'.
On the 'good' side:
The Hematocrit unexpectedly rose for the second week in a row, and is now solidly in the preferred range.
Accordingly, the Red Count also rose following two weeks of losses. Though still below the desired range, it is nice to see this lab up here once more.
On the 'not-so-good side:
The White Count rose two full points despite the increased Myfortic. This rise could be coincidental as tomorrow (14 April) is my next infusion of Belatacept, and with the kidney already struggling, the lack of Belatacept may be too much for the kidney. Next weeks' labs will be a telling point.
As expected, the Lymphocytes dropped again, but not as far as I'd expected.
Lastly, the Creatinine. Though it is a modest rise overall, the fact that this went above 3.0 again in spite of the increased meds is very concerning to the Transplant doctors.
So, they ordered a test for the BK virus; just to rule that out. I have never had a positive BK result, but it still needs to be addressed. I will do that test tomorrow before my infusion.
Assuming that test comes back as negative, the doctors are looking to try a home-based increase of Prednisone for a few days, then see what my labs are next week. Based on that, I'll either have another med change, get a Renal Biopsy or be admitted to the hospital for a rejection or a rejection episode. So, next week will be pivotal.
What fun! :ol
I will update this entry later this week when I know the BK results and Prednisone regimen.
I hope that you are all staying healthy, strong and doing what is required to keep this Chinese virus from infecting you and your loved ones.
So, until later this week...
Good Health to All!
ScottW
Monday, April 6, 2020
Post-Transplant Update: 06 April 2020
Labs are in, and the next move has already been decided.
06 April 20 Labs
*Creat: 2.93 (a drop of 0.35)
*HCT: 35.5 (-0.7) Slightly Low
*Hemo: 11.2 (-0.1) IR
*Lymph: 17.2 (+9.7) Slightly Low
*Lymph ABS: 0.9 (+0.4) Low
*Neut: 72.3 (-1.4) IR (Finally!)
*Neut ABS: 3.8 (-0.7) IR
*RBC: 3.96 (-0.07) Very Low
*WBC: 5.3 (-0.7) IR
*BUN: 39 (-6) Very High
*CA: 9.0 (-0.2) IR
*GFR: 23 (+3) Extremely Low
*Gluc: 104
*K+: 4.0 (-0.1) IR
*NA+: 138 (-1) IR
*MG: 2.2 (-0.1) IR
*Phos: 3.9 (-0.2) IR
*NC= No Change *IR= In Range
*U/A
Specific Gravity, Urine: 1.011 (Normal Range is 1.003-1.030)
The somewhat good news on my labs is the drop of the Creatinine. Yes, it came down a bit, but not far enough. I'll discuss more about this below.
The Lymphocytes took a terrific upward bounce into a just-below-normal range. My excitement is, of course, tempered with knowing the yo-yo pattern of this lab value over the last number of months. At this point, I won't hold my breath that it will stay at this level.
The White Count was down slightly; but this is likely due to the extra Myfortic I am taking. I'm sure that my current dosage will be adjusted again should the WBC's drop again next week.
On the Urinalysis, the only change was a very slight decrease of the Specific Gravity; which is of zero concern.
Now, on the Creatinine, I said, "...somewhat good news" because of the non-blood work factors involved. The peripheral edema in my feet has now extended to my lower legs, going about halfway up to my knees. It stays there every day until I sleep, when it disseminates out of or into the rest of my body. However, after about an hour the next morning, it has returned.
This has also been happening [all weekend] on the days I take the diuretic, Torsemide. Additionally, on the Torsemide days, I have not lost any water weight. In fact, I gained 1.5 Kg's of water weight over the past four days.
Then, there is my blood pressure. Since Friday, the morning readings are inching upward to the low 130's (systolic), while the evening readings have been in the 160's and 170's (systolic).
NOT good!
So, I called my Transplant Coordinator and passed on all of the relevant information. This was passed on to the Clinic doctors who then ordered a Renal Angiogram in order to take a look at the Renal Artery and open it up, if needed. If the artery is not the issue, then I'll receive more instructions. The Angiogram should happen this week.
For now, that is all I have. All meds remain the same, as does fluid intake, and proper twice-daily vitals. Until the Angiogram happens, it is just a wait and watch approach.
I will keep you updated.
Good Health to All!
ScottW
06 April 20 Labs
*Creat: 2.93 (a drop of 0.35)
*HCT: 35.5 (-0.7) Slightly Low
*Hemo: 11.2 (-0.1) IR
*Lymph: 17.2 (+9.7) Slightly Low
*Lymph ABS: 0.9 (+0.4) Low
*Neut: 72.3 (-1.4) IR (Finally!)
*Neut ABS: 3.8 (-0.7) IR
*RBC: 3.96 (-0.07) Very Low
*WBC: 5.3 (-0.7) IR
*BUN: 39 (-6) Very High
*CA: 9.0 (-0.2) IR
*GFR: 23 (+3) Extremely Low
*Gluc: 104
*K+: 4.0 (-0.1) IR
*NA+: 138 (-1) IR
*MG: 2.2 (-0.1) IR
*Phos: 3.9 (-0.2) IR
*NC= No Change *IR= In Range
*U/A
Appearance: Normal
Color: Normal
Color: Normal
Glucose, UR: Negative
Hgb,UR: Negative
Ketones, UR: Negative
Leuk Esterase: Negative
Nitrite: Negative
pH, Urine: 6.0 (Normal Range is 5.0-8.5)
Prot, UR: Negative
The somewhat good news on my labs is the drop of the Creatinine. Yes, it came down a bit, but not far enough. I'll discuss more about this below.
The Lymphocytes took a terrific upward bounce into a just-below-normal range. My excitement is, of course, tempered with knowing the yo-yo pattern of this lab value over the last number of months. At this point, I won't hold my breath that it will stay at this level.
The White Count was down slightly; but this is likely due to the extra Myfortic I am taking. I'm sure that my current dosage will be adjusted again should the WBC's drop again next week.
On the Urinalysis, the only change was a very slight decrease of the Specific Gravity; which is of zero concern.
Now, on the Creatinine, I said, "...somewhat good news" because of the non-blood work factors involved. The peripheral edema in my feet has now extended to my lower legs, going about halfway up to my knees. It stays there every day until I sleep, when it disseminates out of or into the rest of my body. However, after about an hour the next morning, it has returned.
This has also been happening [all weekend] on the days I take the diuretic, Torsemide. Additionally, on the Torsemide days, I have not lost any water weight. In fact, I gained 1.5 Kg's of water weight over the past four days.
Then, there is my blood pressure. Since Friday, the morning readings are inching upward to the low 130's (systolic), while the evening readings have been in the 160's and 170's (systolic).
NOT good!
So, I called my Transplant Coordinator and passed on all of the relevant information. This was passed on to the Clinic doctors who then ordered a Renal Angiogram in order to take a look at the Renal Artery and open it up, if needed. If the artery is not the issue, then I'll receive more instructions. The Angiogram should happen this week.
For now, that is all I have. All meds remain the same, as does fluid intake, and proper twice-daily vitals. Until the Angiogram happens, it is just a wait and watch approach.
I will keep you updated.
Good Health to All!
ScottW
Friday, April 3, 2020
Post-Transplant Update: 03 April 2020
A limited update!
I received two calls from the Transplant Clinic doctors on Wednesday afternoon. They are very concerned about the Creatinine, my overall blood pressures and my worsening tiredness. However, because of the current Chinese Virus pandemic, a patient must be emergent (suddenly critical or necessary) before the hospital can redirect resources away from that fight.
So for right now, I have two med changes.
1) Double the daily intake of Myfortic [to 720 mgs 2x/day], just in case my White Cell count suddenly spikes due to a rejection or a rejection episode.
2) Increase my Clonidine intake (0.2 mg) from twice each day to three times. It is hoped that the added BP med will help mitigate any further increases in my blood pressure readings.
Also, I am to watch for any unusual or worsening peripheral edema, despite my use of the powerful diuretic, Torsemide.
Last, I am to do full weekly labs once more, starting on Monday. Full labs include, CBC, Renal Panel, Urinalysis, Magnesium, Phosphorous, etc.
IF my lab results continue to worsen, the doctors will move to diagnostics, and hospitalization, if needed.
Fun stuff!
And with the pandemic, the timing couldn't be worse.
I am hoping that all I need is a med adjustment; but with the Creatinine spiking, and the sudden edema in my lower legs I had last evening, a med change may not be enough.
Here are the possible outcomes:
Best case scenario...
The med changes work, and I continue moving forward.
The mildly bad case scenario...
I am having a rejection episode requiring hospitalization and knocking down what immune system I still have for a fourth time.
Worst case scenario...
I lose the kidney, have to go back on dialysis and await another transplant.
I cannot say that this is wholly unexpected. After all, a transplant is merely a treatment and NOT a cure!
Things can and do go wrong with a transplant. That is the reality. If you cannot accept that basic fact, then you have no business receiving one.
Anyhow, I will get down off my soap box. My lab results will be posted on Monday afternoon, along with any sudden instructions, should the numbers dictate.
Until then, continue to stay safe, doing all you must in order to keep the spread of this deadly virus from exploding.
Good Health to All!
ScottW
I received two calls from the Transplant Clinic doctors on Wednesday afternoon. They are very concerned about the Creatinine, my overall blood pressures and my worsening tiredness. However, because of the current Chinese Virus pandemic, a patient must be emergent (suddenly critical or necessary) before the hospital can redirect resources away from that fight.
So for right now, I have two med changes.
1) Double the daily intake of Myfortic [to 720 mgs 2x/day], just in case my White Cell count suddenly spikes due to a rejection or a rejection episode.
2) Increase my Clonidine intake (0.2 mg) from twice each day to three times. It is hoped that the added BP med will help mitigate any further increases in my blood pressure readings.
Also, I am to watch for any unusual or worsening peripheral edema, despite my use of the powerful diuretic, Torsemide.
Last, I am to do full weekly labs once more, starting on Monday. Full labs include, CBC, Renal Panel, Urinalysis, Magnesium, Phosphorous, etc.
IF my lab results continue to worsen, the doctors will move to diagnostics, and hospitalization, if needed.
Fun stuff!
And with the pandemic, the timing couldn't be worse.
I am hoping that all I need is a med adjustment; but with the Creatinine spiking, and the sudden edema in my lower legs I had last evening, a med change may not be enough.
Here are the possible outcomes:
Best case scenario...
The med changes work, and I continue moving forward.
The mildly bad case scenario...
I am having a rejection episode requiring hospitalization and knocking down what immune system I still have for a fourth time.
Worst case scenario...
I lose the kidney, have to go back on dialysis and await another transplant.
I cannot say that this is wholly unexpected. After all, a transplant is merely a treatment and NOT a cure!
Things can and do go wrong with a transplant. That is the reality. If you cannot accept that basic fact, then you have no business receiving one.
Anyhow, I will get down off my soap box. My lab results will be posted on Monday afternoon, along with any sudden instructions, should the numbers dictate.
Until then, continue to stay safe, doing all you must in order to keep the spread of this deadly virus from exploding.
Good Health to All!
ScottW
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