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
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