I know it has been two weeks since my last update, but frankly, I haven't had much to report on.
Last Monday, my labs showed that the Hemoglobin had risen to 9.8; just below the threshold for discontinuing the Aranesp injections. So, I had that injection as scheduled.
I just returned from getting this weeks' lab draw, so I will be posting those results as soon as I have them.; which means that this entry is a work in progress.
Today, let's start with my headaches. Over the past two weeks, I have had a persistent TMD headache that just refuses to improve. It has averaged a solid 7, with occasional dips into the 8-9 territory. Where I had been having a great month in regards to pain meds, that has since disappeared, and I am now taking about three T3's per day, plus three Tylenols (500 mg). Only twice have I needed to go to something stronger. Even using my NTI devices has not helped. Plus, my jaw is popping really hard, which [obviously] indicates strong TMD involvement. I'll just continue doing everything I normally do in order to get the jaw to relax, which it eventually will.
My hematocrit last week rose to 31.1 (+1.5 from week previous),but my RBC rose only 0.18 to a still extremely low 3.34. So, despite the improved HCT and Hemoglobin, my energy level, though slightly improved, is still terrible. Hopefully todays' labs show more improvement on all fronts in this regard. Only now am I entering the 6-8 week period of when I should be seeing greater energy from the Aranesp shots. I am looking with hopefulness to seeing my energy increasing significantly.
The kidney has been chugging along nicely. I am not only voiding all the fluid I intake every day, but I am also losing more prednisone weight. Last week, I saw my weight drop below 115 kg since before the last rejection episode. My current weight is 114.2 Kg!
200p--Well, I would normally be posting my labs by now, but my numbers are not being updated on the website as they usually are. In fact, I had to call the lab (no answer) and the infusion center (no answer), then my Transplant Coordinator to track down my hemoglobin result. My coordinator called me back with a 10.0 Hemoglobin, and news that even being at the low end of the required range was good enough, and no Aranesp shot would be needed today. So, I called the Infusion Center again (this time they answered), and cancelled my injection. In the meantime, I am to watch the hemoglobin closely. If it falls below 10.0, I will need another booster of Aranesp. Otherwise, I won't see the Infusion Center until next Tuesday when I get my monthly Belatacept dosage.
**It is now Tuesday, 31 July, and I had to call my Transplant Coordinator to get the hospital lab to get my results from yesterday posted.
30 July 18
*Tac: 3.6 (-0.2) Dropping
*Creat: 2.35 (-0.04) Dropping
*CA: 9.9 (NC) IR
*RBC: 3.40 (+0.06) Very Low
*WBC: 6.2 (+0.5) IR
*HCT: 31.8 (+0.7) Low
*Lymph: 11.8 (+2.9!) Low
*Lymph ABS: 0.7 (+0.2) Low
*Neut: 81.9 (+0.7) Extremely High
*Neut ABS: 5.1 (+0.4) IR
*GFR: 30 (+1) Extremely Low
*BUN: 38 (+2) Very High
*Gluc: 100
*Phos: 3.1 (-0.4) IR
*Hemo: 10.0 (+0.2) IR
*K+: 4.3 (-0.4) IR
NA+: 141 (+1) IR
Prot: 6.6 (-0.2) IR
*MG: 2.0 (+0.1) IR
*BK: Not Checked
*CMV: Not Checked
*NC= No Change IR= In Range
The Tac continues its decline, and with only one week before reducing the daily dosage in half one last time, we will see another large drop in two weeks.
The Creatinine has also dropped again. I'm hoping for a final number below 2.0. Time will tell on that. Once the Tac is eliminated, we should see further drops in the number.
The great news on my labs are the Hematocrit and the Lymphocytes. My HCT continues its climb towards normality (35-37 minimum), which is great news! But the huge leap in my Lymphocytes is quite unexpected. A 2.90 jump is huge! That means that I can go without a mask now, in many situations. But, as previously discussed, I must remain cautious.
Unfortunately, my Reb Blood Cells remain very low. So, despite the hemoglobin and hematocrit rises, my energy will still lag behind. On the positive side of this, everything surrounding my RBC production is doing much better; so, it should only be a matter of time before the RBC fall into line.
Everything else on my labs are moving in the right direction, more or less. The high Neutrophil count is a bit worrying, but unless the Kidney Clinic docs become concerned, I'll try to keep that lab in perspective.
So there you are...all the latest.
With August upon us already, I am looking forward to moving towards better health, and great stability! Exercise is coming soon! :o)
Until next time...
Good Health to All!
ScottW
Tuesday, July 31, 2018
Tuesday, July 17, 2018
Post-Transplant Update: 17 July 2018
Even though I failed to finish that last posting, I have more great news to share;
so let's get started!
Last time I was telling you about my upcoming final loading dosage of Belatacept. Well, that happened on the 10th, as planned, and my next infusion is not until August 7th.
Additionally, at last weeks' Kidney Clinic visit, the doctors cut my daily dosage of Tacrolimus (Tac) in half; now at 0.5 mg 2x per day. In an abundance of caution for how I react to meds, my doctors have instructed that my tapering off of the Tac will take two full months. From the 10 Jul infusion to my first monthly infusion [of Belatacept], I will take the Tac as described above. Following the August infusion, the Tac will again be cut in half to 0.5 mg 1x per day (in the AM). Once I have the September infusion, the Tac will be completely eliminated, and I will have only the Belatacept as the main anti-rejection med.
Next, I had my latest follow-up appointment with the Transplant Team Cardiologist yesterday. After looking at my last echocardiogram, he has determined that my heart is back in fantastic shape! The aorta looks good, as do all the valves in my heart. There is zero damage to the pericardium--the actual tissue/muscle that makes up the heart, so I should have absolutely no problems once I have the energy to start doing exercise.
I was also instructed, that once I begin to get that exercise, that I take things extremely slowly. Undo pressure on the heart could occur simply because of the length of time it has been since I last did any aerobic/anaerobic exercising. IF I feel anything untowards, I need to report it immediately. By the way, the cardiologist is so confident that I am doing so much better that my next appointment isn't going to happen for another year! So, fantastic news all around on the cardiac front!
And for the last of the great news...my latest labs.
16 July 18:
*Tac: 3.8 (-2.4!) Dropping
*Creat: 2.54 (-0.20) Dropping
*CA: 9.6 (-0.5) IR
*RBC: 3.16 (+0.08) Very Low
*WBC: 5.6 (-0.1) IR
*HCT: 29.6 (+1.0) Very Low
*Lymph: 9.5 (+0.8) Very Low
*Lymph ABS: 0.5 (NC) Low
*Neut: 81.7 (-1.6) Extremely High
*Neut ABS: 4.6 (-0.2) IR
*GFR: 27 (+2) Extremely Low
*BUN: 39 (+4) Very High
*Gluc: 103
*Phos: 3.5 (-0.1) IR
*Hemo: 9.3 (+0.1) Low
*K+: 4.4 (-0.1) IR
*NA+: 139 (NC) IR
*Prot: 6.7 (-0.1) IR
*MG: 1.7 (-0.1) Low
*BK: Not Detected
*CMV: Not Detected
As scheduled, the Tac is dropping, just as my daily dosage has dropped. After 07 August...my next infusion of Belatacept...the Tac should drop even further as my Tac intake drops by 50% once again.
The creatinine is also dropping nicely. Thought the new low of this value is still an unknown, the Clinic doctors are optimistic that it could drop below 2.0; which would be AWESOME! :o)
The Aranesp injections (RBC production booster) are also doing just as they are intended to...increase my RBC count. Accordingly, my RBC, Hematocrit and Hemoglobin results have ALL increased.
All in all, all my labs are trending in the right directions...finally. (Whew!)
So, another great bit of news for you this week!
On other fronts, the TMD headaches continue; but the pace and intensity have slowed a bit. On a typical month, I will go through a whole Rx of T3's to combat the headaches. Over the last two months, those same Rx's have lasted an extra week each month. It may not be a lot of progress, but it IS progress! Any improvement is a welcome change.
My appetite has been fickle lately. I'll often be hungry, start eating, then become nauseated for no apparent reason. Though it ruins my appetite, the nausea never advances towards actual emesis. When this happens I try to get as much food into my stomach as I can before I must stop; so at least I'm getting as much food and nutrition as possible. Again, this doesn't happen every time I eat; but often enough. I'm hoping this is because I am now off of the Protonix, and that my body will adjust soon enough and the nausea leaves for good. Time will tell.
Sleeping has been better over the past two weeks. Personally, I think this is because of the uptick in my RBC's and Hematocrit. I am taking few (if any) naps, and the quality of my sleep seems to be better, as well. Let's hope this continues.
Energy-wise, I still lack pretty much any at all. With the improvement due to the Aranesp injections, my energy level will rise; though it will take time...which I have an over-abundance of. For me, patience continues to be the name of the game.
I think that that is all of the news that I have for you today.
Steady progress is finally being made.
Let's keep this trend going!
Good Health to All!
ScottW
Next, I had my latest follow-up appointment with the Transplant Team Cardiologist yesterday. After looking at my last echocardiogram, he has determined that my heart is back in fantastic shape! The aorta looks good, as do all the valves in my heart. There is zero damage to the pericardium--the actual tissue/muscle that makes up the heart, so I should have absolutely no problems once I have the energy to start doing exercise.
I was also instructed, that once I begin to get that exercise, that I take things extremely slowly. Undo pressure on the heart could occur simply because of the length of time it has been since I last did any aerobic/anaerobic exercising. IF I feel anything untowards, I need to report it immediately. By the way, the cardiologist is so confident that I am doing so much better that my next appointment isn't going to happen for another year! So, fantastic news all around on the cardiac front!
And for the last of the great news...my latest labs.
16 July 18:
*Tac: 3.8 (-2.4!) Dropping
*Creat: 2.54 (-0.20) Dropping
*CA: 9.6 (-0.5) IR
*RBC: 3.16 (+0.08) Very Low
*WBC: 5.6 (-0.1) IR
*HCT: 29.6 (+1.0) Very Low
*Lymph: 9.5 (+0.8) Very Low
*Lymph ABS: 0.5 (NC) Low
*Neut: 81.7 (-1.6) Extremely High
*Neut ABS: 4.6 (-0.2) IR
*GFR: 27 (+2) Extremely Low
*BUN: 39 (+4) Very High
*Gluc: 103
*Phos: 3.5 (-0.1) IR
*Hemo: 9.3 (+0.1) Low
*K+: 4.4 (-0.1) IR
*NA+: 139 (NC) IR
*Prot: 6.7 (-0.1) IR
*MG: 1.7 (-0.1) Low
*BK: Not Detected
*CMV: Not Detected
As scheduled, the Tac is dropping, just as my daily dosage has dropped. After 07 August...my next infusion of Belatacept...the Tac should drop even further as my Tac intake drops by 50% once again.
The creatinine is also dropping nicely. Thought the new low of this value is still an unknown, the Clinic doctors are optimistic that it could drop below 2.0; which would be AWESOME! :o)
The Aranesp injections (RBC production booster) are also doing just as they are intended to...increase my RBC count. Accordingly, my RBC, Hematocrit and Hemoglobin results have ALL increased.
All in all, all my labs are trending in the right directions...finally. (Whew!)
So, another great bit of news for you this week!
On other fronts, the TMD headaches continue; but the pace and intensity have slowed a bit. On a typical month, I will go through a whole Rx of T3's to combat the headaches. Over the last two months, those same Rx's have lasted an extra week each month. It may not be a lot of progress, but it IS progress! Any improvement is a welcome change.
My appetite has been fickle lately. I'll often be hungry, start eating, then become nauseated for no apparent reason. Though it ruins my appetite, the nausea never advances towards actual emesis. When this happens I try to get as much food into my stomach as I can before I must stop; so at least I'm getting as much food and nutrition as possible. Again, this doesn't happen every time I eat; but often enough. I'm hoping this is because I am now off of the Protonix, and that my body will adjust soon enough and the nausea leaves for good. Time will tell.
Sleeping has been better over the past two weeks. Personally, I think this is because of the uptick in my RBC's and Hematocrit. I am taking few (if any) naps, and the quality of my sleep seems to be better, as well. Let's hope this continues.
Energy-wise, I still lack pretty much any at all. With the improvement due to the Aranesp injections, my energy level will rise; though it will take time...which I have an over-abundance of. For me, patience continues to be the name of the game.
I think that that is all of the news that I have for you today.
Steady progress is finally being made.
Let's keep this trend going!
Good Health to All!
ScottW
Monday, July 2, 2018
Post-Transplant Update: 02 July 2018
I received some great information during my last Kidney Clinic visit that definitely needs to be shared!
First off, I have now had four Belatacept infusions, and the results are fantastic! My creatinine has steadily dropped to today's 2.57! That's over a 1.0 drop from when I began the new med. Granted, I am still on my full dose of Tac, but without the infusion, I would likely still be struggling to get the creatinine to drop at all. I have one more every-other-week infusion before I go to the once per month schedule. That last one is on the 10th of July, which means the following infusion of Belatacept will be in early August.
--Now, starting that great info--
To start Belatacept, the twice per month schedule is for what is called "loading" the patient. In other words, you are taken quickly to a therapeutic level in order to get on the monthly dosing. Once a patient is at that point, the dosage you receive--in my case, 5 mg/Kg--remains the same as you've already been taking, as does the total infusion time.
Now, once my next infusion is done, the Transplant Docs will begin weaning me off the Tacrolimus. Doing that should take no more than a few weeks. After that, managing my creatinine is solely up to the Belatacept. As I get into better shape, the dosage of the infusion will change as my weight changes.
As of this morning, I have now had three injections of Aranesp in order to boost my RBC production. On that front, the past two injections have done their job and boosted my Hemoglobin, RBC's and Hematocrit. The main number the Transplant Committee is looking at is the Hemoglobin. As this rises, so too will both the RBC's and the Hematocrit. The target for the Hemoglobin is between 10.0-11.0. The higher that number, the better.
My labs this morning reflect only the first two Aranesp injections, and my Hemoglobin has risen from 7.80 to 8.2 to 8.8! This news is spectacular! I'll display the RBC and Hematocrit later in my lab values for today.
The final bit of news that I wanted to relay is that, for transplant rejection patients, the time it will take the Lymphatic System to recover from a second anti-Thymo infusion--used to crash your Immune System and save the organ--is far greater than when a patient has initially received their transplant. So, instead of about a three month recovery, the time increases to between 7-12 months, depending on the patient. This happens because the additional anti-Thymo therapy simply inhibits a faster recovery time. I do not understand the pathophysiology behind this change, it is just what I was told by my Transplant Doc last week.
As a result, even though my latest quarantine period is technically over on the 4th of this month, I must continue observing most quarantine protocols for some time to come. That doesn't mean I am stuck at home, I just have to continue being hyper vigilant about wearing a mask in public, sanitizing my hands often, avoiding cuts as best I can, staying away from kids and babies who are sick, or have been recently inoculated with a live virus, etc. Other things I can no longer do regardless of where my Lymphocytes are at include: Be around anyone who is sick, or who may be carrying a virus, share food or drink, eat at a buffet, be in a crowd without a mask, eat anything of questionable quality or freshness ('If in doubt, throw it out.' (An old restaurant adage)), keep my hands away from my face unless I have just washed or sanitized them, etc.
This morning's labs, my Lymphocytes dropped from 9.5 to 8.4. The target we are wanting is between 19-27. This lab value waffles around constantly, but getting up to the range will take time because of the added time it takes the Lymphatic System to recover.
Some people might say that I am being too paranoid about viral safety. That could very well be the case. However, after having just endured [now] almost nine years of kidney disease, five years of dialysis, multiple dialysis access surgeries, years of intense nausea and vomiting, etc, I am not about to do anything that might jeopardize the kidney I am now caring for! Would you feel differently?
Caring for this kidney is of paramount concern. After all, someone lost their life so that I could have the transplant. Just think about that for a minute....
A family lost a son, husband, father. It is now my responsibility to honor that loss/sacrifice by doing everything I can the ensure that I carry that this healthy kidney for as long as I possible. And that is exactly what I have done, and intend to continue doing for [hopefully] years to come.
Labs: 02 July 18
*Tac: ?? (Dropping as needed)
*Creat: 2.57 (-0.25) Dropping as needed to new low
*CA: 10.2 (+0.1) IR
*RBC: 2.99 (+0.16) Very Low
*WBC: 6.9 (+0.4) IR
*HCT: 27.4 (+1.9) Extremely Low
*Lymph: 8.4 (-1.12.7) Extremely Low
*Lymph ABS: 0.6 (NC) Very Low
*Neut: 84.3 (+0.6) Very High
*Neut ABS: 5.8 (+0.3) IR
*GFR: 27 (+3) Extremely Low
*BUN: 36 (+4) Very High
*Gluc: 107
*Phos: 3.5 (+0.5) IR
*Hemo: 8.8 (+0.6) Very Low
*K+: 4.3 (-0.1) IR
*NA+: 140 (+2) IR
*Prot: 6.8 (+0.1) IR
Though the Tac, BK and CMV results are not yet available, most of these numbers are trending in the right direction. I am very pleased with the results!
That's all I am going to do today. Because of a long nap, I started this entry much later that I had intended, and it's now time for dinner. I will try to finish up either on this entry, or a new one in the next day or two.
May each of you have a fun, safe July 4th celebration! Please remember to honor, in some way, those great men who sacrificed so much, so that we could enjoy the Liberties we have today.
Good Health to All!
ScottW
First off, I have now had four Belatacept infusions, and the results are fantastic! My creatinine has steadily dropped to today's 2.57! That's over a 1.0 drop from when I began the new med. Granted, I am still on my full dose of Tac, but without the infusion, I would likely still be struggling to get the creatinine to drop at all. I have one more every-other-week infusion before I go to the once per month schedule. That last one is on the 10th of July, which means the following infusion of Belatacept will be in early August.
--Now, starting that great info--
To start Belatacept, the twice per month schedule is for what is called "loading" the patient. In other words, you are taken quickly to a therapeutic level in order to get on the monthly dosing. Once a patient is at that point, the dosage you receive--in my case, 5 mg/Kg--remains the same as you've already been taking, as does the total infusion time.
Now, once my next infusion is done, the Transplant Docs will begin weaning me off the Tacrolimus. Doing that should take no more than a few weeks. After that, managing my creatinine is solely up to the Belatacept. As I get into better shape, the dosage of the infusion will change as my weight changes.
As of this morning, I have now had three injections of Aranesp in order to boost my RBC production. On that front, the past two injections have done their job and boosted my Hemoglobin, RBC's and Hematocrit. The main number the Transplant Committee is looking at is the Hemoglobin. As this rises, so too will both the RBC's and the Hematocrit. The target for the Hemoglobin is between 10.0-11.0. The higher that number, the better.
My labs this morning reflect only the first two Aranesp injections, and my Hemoglobin has risen from 7.80 to 8.2 to 8.8! This news is spectacular! I'll display the RBC and Hematocrit later in my lab values for today.
The final bit of news that I wanted to relay is that, for transplant rejection patients, the time it will take the Lymphatic System to recover from a second anti-Thymo infusion--used to crash your Immune System and save the organ--is far greater than when a patient has initially received their transplant. So, instead of about a three month recovery, the time increases to between 7-12 months, depending on the patient. This happens because the additional anti-Thymo therapy simply inhibits a faster recovery time. I do not understand the pathophysiology behind this change, it is just what I was told by my Transplant Doc last week.
As a result, even though my latest quarantine period is technically over on the 4th of this month, I must continue observing most quarantine protocols for some time to come. That doesn't mean I am stuck at home, I just have to continue being hyper vigilant about wearing a mask in public, sanitizing my hands often, avoiding cuts as best I can, staying away from kids and babies who are sick, or have been recently inoculated with a live virus, etc. Other things I can no longer do regardless of where my Lymphocytes are at include: Be around anyone who is sick, or who may be carrying a virus, share food or drink, eat at a buffet, be in a crowd without a mask, eat anything of questionable quality or freshness ('If in doubt, throw it out.' (An old restaurant adage)), keep my hands away from my face unless I have just washed or sanitized them, etc.
This morning's labs, my Lymphocytes dropped from 9.5 to 8.4. The target we are wanting is between 19-27. This lab value waffles around constantly, but getting up to the range will take time because of the added time it takes the Lymphatic System to recover.
Some people might say that I am being too paranoid about viral safety. That could very well be the case. However, after having just endured [now] almost nine years of kidney disease, five years of dialysis, multiple dialysis access surgeries, years of intense nausea and vomiting, etc, I am not about to do anything that might jeopardize the kidney I am now caring for! Would you feel differently?
Caring for this kidney is of paramount concern. After all, someone lost their life so that I could have the transplant. Just think about that for a minute....
A family lost a son, husband, father. It is now my responsibility to honor that loss/sacrifice by doing everything I can the ensure that I carry that this healthy kidney for as long as I possible. And that is exactly what I have done, and intend to continue doing for [hopefully] years to come.
Labs: 02 July 18
*Tac: ?? (Dropping as needed)
*Creat: 2.57 (-0.25) Dropping as needed to new low
*CA: 10.2 (+0.1) IR
*RBC: 2.99 (+0.16) Very Low
*WBC: 6.9 (+0.4) IR
*HCT: 27.4 (+1.9) Extremely Low
*Lymph: 8.4 (-1.12.7) Extremely Low
*Lymph ABS: 0.6 (NC) Very Low
*Neut: 84.3 (+0.6) Very High
*Neut ABS: 5.8 (+0.3) IR
*GFR: 27 (+3) Extremely Low
*BUN: 36 (+4) Very High
*Gluc: 107
*Phos: 3.5 (+0.5) IR
*Hemo: 8.8 (+0.6) Very Low
*K+: 4.3 (-0.1) IR
*NA+: 140 (+2) IR
*Prot: 6.8 (+0.1) IR
*MG: 1.6 (NC) Low
*BK: Not Checked/No Results
*CMV: Not Checked/No Results
Though the Tac, BK and CMV results are not yet available, most of these numbers are trending in the right direction. I am very pleased with the results!
That's all I am going to do today. Because of a long nap, I started this entry much later that I had intended, and it's now time for dinner. I will try to finish up either on this entry, or a new one in the next day or two.
May each of you have a fun, safe July 4th celebration! Please remember to honor, in some way, those great men who sacrificed so much, so that we could enjoy the Liberties we have today.
Good Health to All!
ScottW
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