I went into the biopsy having a terrible TMD headache. It ranked a solid 10, and I had already taken pain meds that morning; though they failed to put a dent in the intensity of the headache. This would later come into play.
The nurses hard a very difficult time getting an IV in my L arm. The first try resulted in a tissue infiltration. The second resulted in a viable line that blew just as a BP check was being run. This caused the vein to blow and a lot of IV fluid leaked into the site which caused a swelling near my elbow that was the size of half a softball. The third try was in my L hand and after initially hitting the vein, the catheter punctured the vein. On the fourth try, another nurse tried just below my wrist and the exact same type of infiltration happened. The fifth attempt finally met with success. This IV placement was about halfway between my wrist and my elbow. So, now my L arm is beaten up once more...
The nurses hard a very difficult time getting an IV in my L arm. The first try resulted in a tissue infiltration. The second resulted in a viable line that blew just as a BP check was being run. This caused the vein to blow and a lot of IV fluid leaked into the site which caused a swelling near my elbow that was the size of half a softball. The third try was in my L hand and after initially hitting the vein, the catheter punctured the vein. On the fourth try, another nurse tried just below my wrist and the exact same type of infiltration happened. The fifth attempt finally met with success. This IV placement was about halfway between my wrist and my elbow. So, now my L arm is beaten up once more...
I went in for the renal biopsy at around 1230p. Everything there went well. The doctor had to get three samples in order for a decent tissue aspiration to be had. Once that was accomplished, I was taken back to the recovery room.
This whole time, my headache was ramping up, becoming more and more intense. While laying in recovery, there was a ceiling light that shone directly in my eyes, causing even more headache pain. I ended up putting on sunglasses in order to try to stop the growing pain. Meanwhile, the nurse ordered a morphine injection to try to stop the headache.
The post-biopsy routine includes approximately four hours of laying still. The first two hours are flat on your back, and the last two are in a semi-recumbent position. At that two hour mark, the headache, still growing despite the morphine, finally cause me to do something that has happened only one time in the thirty two years I have had TMD. Just after I sat up into the semi-recumbent position I suddenly grew incredibly nauseated and within seconds, I was throwing up into an emesis bag. Since I had not eaten anything since the previous night, all that I got out was bile and water. Unfortunately, this was not only time that would happen.
The post-biopsy routine includes approximately four hours of laying still. The first two hours are flat on your back, and the last two are in a semi-recumbent position. At that two hour mark, the headache, still growing despite the morphine, finally cause me to do something that has happened only one time in the thirty two years I have had TMD. Just after I sat up into the semi-recumbent position I suddenly grew incredibly nauseated and within seconds, I was throwing up into an emesis bag. Since I had not eaten anything since the previous night, all that I got out was bile and water. Unfortunately, this was not only time that would happen.
After my stomach somewhat settled down, the nausea increased again and about and hour later, I got rid of more bile and water. This time however, the nausea failed to decrease. At four hours I was still horribly nauseated. Around this time the biopsy result came back, and it showed no further scarring of the kidney! (What a relief!) The Transplant Team docs told me that a med adjustment would be proposed at my regular Kidney Clinic appoint scheduled for the following Tuesday. So now, all I had to wait for was the follow-up renal ultrasound to look for internal bleeding. This happened shortly after 5p, and the supervising doctor came in at around 530p to tell me that the kidney and surrounding area were clear of any bleeding.
Still terribly nauseated, I got ready to go home.
I made it as far as the car before the nausea became overwhelming once more. Just before taking off, I threw up for the third time; and again, it was all bile and some water. All the throwing up was unbelievably hard on my body, and I was thoroughly exhausted by this point. The ride home would be challenging, to say the least. While we missed most of the rush hour traffic, all the stop and go nearly sent me over the edge several more times in the hour it took to arrive home. Luckily, that third emesis was the last time it would happen; though, the rest of the evening was quite miserable.
The last time my body reacted like this to a TMD headache was around 1998. I had been working all day with an increasingly terrible headache and decided at around 300p that day to leave early...which I never did. On my drive home the pain--which I had zero strong meds for--increased exponentially. About halfway home, I had grown increasingly nauseated, so I pulled over on a little-used exit, parked on the side of the road, and promptly threw up two times. Once done, I continued on my drive. However, about fifteen minutes later, I had to pull over again, and threw up three more times. Once I started driving, the pain had become so intense that, to this day, I cannot remember the last twenty minutes of my drive. I only know that I had made it home safely.
So, after all these years, I was surprised that my body had responded to the headache like this. I initially thought that I'd had a reaction to a procedure med; but I've had that test--and all the meds three times previously with no such reaction. The only thing different in this case was the awful headache I already had when I went in for the biopsy.
Anyhow, while the test came out with a terrific result, the day ended up quite miserably.
Over the weekend since the biopsy, my body was completely wiped out. First from the TMD headache--which had finally subsided by the next morning--and also from the pain of the test itself. The site of the aspiration needle insertion is always painful for at least several days afterwards. Then, add in the stress on my abdominal muscles from the vomiting and you have a long weekend.
At Kidney Clinic on Tuesday I finally learned about the new med that the Transplant Team wanted me to start using in order to try to correct the worrisome labs that continued. It is called "Belotacept," and is an infusion med that will end up replacing the Prograf. Initially, I will receive an infusion once every two weeks for around six weeks. After that, the infusion will happen just once every month...forever. Meanwhile, the doctors will give me a taper schedule to reduce, then eliminate, the Prograf by the time I am getting the Belotacept infusion once per month.
I will still be taking all my other meds; I just will be completely off the Prograf.
And by the way, my daily dose of the Myfortic has been upped once again going from 540 mg 2x/day to 720 mg 2x/day. This is the maximum dosage of Myfortic I will be taking.
I do not yet have all the info on Belotacept as I have been exhausted all week. I will gather the info soon and share it on my next blog.
As far as other info, I will give you my two latest blood draw results and my thoughts on those, then wrap this entry up.
07 and 10 May 2018
*Tac: 8.4 (+2.2) High 7.9 (-0.5) IR
*Creat: 3.49 (+0.09) Extremely High 3.72 (+0.23) Extremely High
*CA: 9.8 (-0.1) IR 10.0 (+0.2) IR
*RBC: 3.04 (-0.09) Very Low 3.05 (+0.01) Very Low
*WBC: 6.3 (+1.6) IR 6.0 (-0.3) IR
*HCT: 26.7 (-1.2) Extremely Low 27.5 (+0.8) Extremely Low
*Lymph: 9.1 (-1.9) Low 8.6 (-0.5) Low
*Lymph ABS: 0.6 (+0.1) Very Low 0.5 (-0.1) Very Low
*Neut: 82.1 (+2.3) Very High 78.8 (-2.3) Very High
*Neut ABS: 5.1 (+1.4) IR 4.8 (-0.3) IR
*GFR: 19 (-5) Extremely Low 17 (-2) Extremely Low
*BUN: 48 (-3) Very High 49 (+1) Very High
*Gluc: 100 104
*Phos: 3.2 (-0.3) IR 3.3 (+0.1) IR
*Hemo: 8.7 (-0.2) Very Low 9.0 (+0.3) Very Low
*K+: 5.0 (-0.1) IR 5.1 (+0.1) High
*NA+: 136 (-2) Low 140 (+4) IR
*Prot: 6.4 (+0.1) IR 6.6 (+0.2) IR
*MG: 1.6 (+0.1) Low 1.5 (-0.1) Low
*BK: Neg Not Taken
*CMV: Neg Not Taken
Additionally, Urinalysis consistently shows negative Ketones (pr: Key-Tones), which is great news. The presence of ketones indicates diabetes, which can develop as a result of the anti-rejection meds. If this ever changes, I will note it on a future entry.
So, the labs show both good and bad results. The ones I am particularly interested in at this point are the Red Blood Cells and the Hematocrit. Both are very or extremely low and confirm what I have suspected since the rejection in March...that the kidney, which regulates the production of Red Blood Cells in the bone marrow, is having a difficult time getting that done. This is likely the cause of my ongoing exhaustion since I came home in early April. Hopefully, the Belotacept will help kick the RBC production into gear. If not, something else (other factors) could be in play. Time will tell.
So, that's the latest. I will write about the Belotacept and my first infusion therapy after next Tuesday.
Until then...
Good Health to All!
ScottW
The last time my body reacted like this to a TMD headache was around 1998. I had been working all day with an increasingly terrible headache and decided at around 300p that day to leave early...which I never did. On my drive home the pain--which I had zero strong meds for--increased exponentially. About halfway home, I had grown increasingly nauseated, so I pulled over on a little-used exit, parked on the side of the road, and promptly threw up two times. Once done, I continued on my drive. However, about fifteen minutes later, I had to pull over again, and threw up three more times. Once I started driving, the pain had become so intense that, to this day, I cannot remember the last twenty minutes of my drive. I only know that I had made it home safely.
So, after all these years, I was surprised that my body had responded to the headache like this. I initially thought that I'd had a reaction to a procedure med; but I've had that test--and all the meds three times previously with no such reaction. The only thing different in this case was the awful headache I already had when I went in for the biopsy.
Anyhow, while the test came out with a terrific result, the day ended up quite miserably.
Over the weekend since the biopsy, my body was completely wiped out. First from the TMD headache--which had finally subsided by the next morning--and also from the pain of the test itself. The site of the aspiration needle insertion is always painful for at least several days afterwards. Then, add in the stress on my abdominal muscles from the vomiting and you have a long weekend.
At Kidney Clinic on Tuesday I finally learned about the new med that the Transplant Team wanted me to start using in order to try to correct the worrisome labs that continued. It is called "Belotacept," and is an infusion med that will end up replacing the Prograf. Initially, I will receive an infusion once every two weeks for around six weeks. After that, the infusion will happen just once every month...forever. Meanwhile, the doctors will give me a taper schedule to reduce, then eliminate, the Prograf by the time I am getting the Belotacept infusion once per month.
I will still be taking all my other meds; I just will be completely off the Prograf.
And by the way, my daily dose of the Myfortic has been upped once again going from 540 mg 2x/day to 720 mg 2x/day. This is the maximum dosage of Myfortic I will be taking.
I do not yet have all the info on Belotacept as I have been exhausted all week. I will gather the info soon and share it on my next blog.
As far as other info, I will give you my two latest blood draw results and my thoughts on those, then wrap this entry up.
07 and 10 May 2018
*Tac: 8.4 (+2.2) High 7.9 (-0.5) IR
*Creat: 3.49 (+0.09) Extremely High 3.72 (+0.23) Extremely High
*CA: 9.8 (-0.1) IR 10.0 (+0.2) IR
*RBC: 3.04 (-0.09) Very Low 3.05 (+0.01) Very Low
*WBC: 6.3 (+1.6) IR 6.0 (-0.3) IR
*HCT: 26.7 (-1.2) Extremely Low 27.5 (+0.8) Extremely Low
*Lymph: 9.1 (-1.9) Low 8.6 (-0.5) Low
*Lymph ABS: 0.6 (+0.1) Very Low 0.5 (-0.1) Very Low
*Neut: 82.1 (+2.3) Very High 78.8 (-2.3) Very High
*Neut ABS: 5.1 (+1.4) IR 4.8 (-0.3) IR
*GFR: 19 (-5) Extremely Low 17 (-2) Extremely Low
*BUN: 48 (-3) Very High 49 (+1) Very High
*Gluc: 100 104
*Phos: 3.2 (-0.3) IR 3.3 (+0.1) IR
*Hemo: 8.7 (-0.2) Very Low 9.0 (+0.3) Very Low
*K+: 5.0 (-0.1) IR 5.1 (+0.1) High
*NA+: 136 (-2) Low 140 (+4) IR
*Prot: 6.4 (+0.1) IR 6.6 (+0.2) IR
*MG: 1.6 (+0.1) Low 1.5 (-0.1) Low
*BK: Neg Not Taken
*CMV: Neg Not Taken
Additionally, Urinalysis consistently shows negative Ketones (pr: Key-Tones), which is great news. The presence of ketones indicates diabetes, which can develop as a result of the anti-rejection meds. If this ever changes, I will note it on a future entry.
So, the labs show both good and bad results. The ones I am particularly interested in at this point are the Red Blood Cells and the Hematocrit. Both are very or extremely low and confirm what I have suspected since the rejection in March...that the kidney, which regulates the production of Red Blood Cells in the bone marrow, is having a difficult time getting that done. This is likely the cause of my ongoing exhaustion since I came home in early April. Hopefully, the Belotacept will help kick the RBC production into gear. If not, something else (other factors) could be in play. Time will tell.
So, that's the latest. I will write about the Belotacept and my first infusion therapy after next Tuesday.
Until then...
Good Health to All!
ScottW
No comments:
Post a Comment