Another week has gone by and my energy has fractionally increased once again.
Though not a large increase, there is a definite difference over last week. This may be due to an upswing in my RBC's. It now sits at 3.65; just 0.85 below the low end of the acceptable range. Additionally, my Hematocrit improved, and my Hemoglobin bounced back a touch. While the increases may be incremental, they all combine for an uptick in my overall energy level.
This weeks' labs look good. Let's review them...
27 Aug 18 Labs
*Tac: 2.6 (+0.6)
*Creat: 2.23 (-0.14) Dropping
*HCT: 33.3 (+0.6) Low
*Hemo: 10.6 (+0.3) IR
*Lymph: 12.4 (+5.8) Low
*Lymph ABS: 0.6 (+0.2) Low
*Neut: 82.7 (NC) Extremely High
*Neut ABS: 4.3 (-0.6) IR
*RBC: 3.65 (+0.07) Low
*WBC: 5.2 (-0.7) IR
*BUN: 38 (+10) Very High
*CA: 10.1 (+0.4) IR
*GFR: 32 (+2) Extremely Low
*Gluc: 98
*K+: 4.3 (NC) IR
*NA+: 140 (+1) IR
*Prot: 7.0 (+0.3) IR
*MG: 2.0 (-0.2) IR
Phos: 2.9 (-0.8) IR
BK: Not Checked
CMV: Not Checked
NC = No Change IR+ In Range
The Tac reading I am no longer concerned with. One week from today will be my last dosage, so next weeks' Tac number will be the last one, too.
The Creatinine continues to drop nicely. Once I am off the Tac (Prograf), it will be around two more months before my body settles into more of a permanent, level reading.
As I mentioned above, the Hematocrit, Hemoglobin and RBC's all rebounded slightly. The further away from my last rejection, the more all of these should rise until each hit the right range.
I highlighted the Lymphocytes because of the huge jump in the number. This hopefully indicates a stronger immune system. However, if you notice the Lymph ABS, that number, ideally a 1.0+, still lags behind the pace of the lymphocytes. Because of this, I will not be the least bit surprised if that jump is only temporary. The last time the Lymph rose that high, and the ABS remained low, I saw the Lymphs plunge 9.8 points. So, we shall see..
The BUN unfortunately rose ten points. This may be an aberrancy as the drop in the BUN has been fairly steady. The goal here is a reading of 20.
The GFR continues its slow, steady climb towards the target range of 60 (minimum).
Of the seventeen highlighted labs, nine are within the targeted ranges. I'll take that!
My sleep has improved this past week. Even though I am still getting up 4-6 times per night to empty my bladder, I have been able to get back to sleep fairly quickly.
The TMD headaches have again persisted. Despite my NTI devices and being aware of my jaw position while laying on my R side, the TMD is putting up a good fight. As I've explained before, this is all part of its long cycle. I am hoping that the increased pain level will soon see a significant drop as part of an extended down cycle.
My appetite is good, considering my lack of physical exertion. However, I am not eating so much that I am gaining weight. In fact, I hit a multi-week low of 115.5 Kg a few days ago. This tells me two things; 1) I am not eating too much for my activity level. 2) My kidney is, over a 24 hour period, processing all of the fluids I am taking in, plus a little more. I still have a hard time processing over 3.5 liters of fluid, so I try to stay around 3.0 liters intake every day. Over time, this will increase.
In correlation with my final dosage of Tac being next Tuesday, I also have my next Belatacept infusion on that day, as well. So, on Wednesday, September 5th, I will be completely off Tacrolimus (Prograf) for good.
The appointment with my local Nephrologist is tomorrow afternoon. Like I stated in my last entry, this is the beginning of transitioning over to his care [from that of the Kidney Clinic Team]. This appointment will be more of an update, getting on the same page meeting so that he knows where everything is at. If anything important comes up I will note it at the end of this entry. If not, I will write about it next week.
Lastly, with the end of the month coming up, and the continued upward swing in my energy, I am expecting to start my walks; if only a short distance each day, or so. It may take several weeks before I see much improvement in strength or endurance, so I will be patient, and just stick to the exercise goals I outlined last week.
And that is all I have for you today. Thank you for following me and my progress!
Good Health to All!
ScottW
Tuesday, August 28, 2018
Tuesday, August 21, 2018
Post-Transplant Update: 21 August 2018
This past week has been fairly uneventful; aside from Kidney Clinic.
So let's start there...
At this stage, my Kidney Clinic visits typically go like this:
-Get called back; get my weight on the way to the exam room.
(*An important note...Whenever you are weighed at a doctor's office, be sure to remove your cell phone and anything else that is heavy in your pockets. Remove shoes if possible. This assures a more accurate weight. I usually go to clinic and doctor visits wearing lightweight clothing to help, as well. Plus, I always weigh myself in the morning, sans clothing, so I know my real weight.)
-Once in the room, I have my BP, Pulse Respiration rate and O2 Sats (saturation) measured. I will usually ask to wait about two minutes before these are taken so that (after walking) my heart rate and BP settle back towards a normal range.
-A Clinic PA will come in first. My current meds are reviewed, my weights, pulses and BP readings for the past time since my last visit are noted, and highs and lows of all are noted, as well. Any questions I have are asked, answered or written for physician review.
-A Clinic Pharmacist will occasionally come in to also review meds.
-Finally, a Clinic Nephrologist will come in, review the PA's visit, and give any additional instructions, change meds, etc.
Then the visit is over. Depending on patient volume on any given day, the total visit time can range from 45 minutes to two hours.
*Remember...this clinic schedule is for me and for my Kidney Clinic only. Other systems are highly likely to be different, so be sure to follow your clinic protocols.
Anyhow, my Clinic visit went well. For now, there are no changes to meds, and I was reminded that my labs settling down will just take time. With the Tac soon to be a thing of the past, it will be at least two additional months before we see the creatinine level reach its new low.
And speaking of labs, here are the latest...
*I have changed the order of the listed labs based on where each is listed on the readout. The only exceptions are the Tac, Creatinine and BK/CMV.
20 Aug 18 Labs:
*Tacrolimus (Tac): 2.0 (NC) Dropping
*Creatinine (Creat): 2.37 (-0.04) Dropping
*Hematocrit (HCT): 32.7 (-0.7) Low
*Hemoglobin (Hemo): 10.3 (-0.2) IR
*Lymphocytes (Lymph): 6.6 (-0.3) Extremely Low
*Lymphocytes ABS (Lymph ABS): 0.4 (NC) Very Low
*Neutrophils (Neut): 82.7 (+0.2) Extremely High
*Neutrophils ABS (Neut ABS): 4.9 (-0.2) IR
*Red Blood Cells (RBC): 3.58 (-0.01) Very Low
*White Blood Cells (WBC): 5.9 (-0.2) IR
*Blood Urea Nitrogen (BUN): 28 (-7) High
*Calcium (CA): 9.7 (-0.6) IR
*Glomerular Filtration Rate (GFR): 30 (+1) Extremely Low
*Blood Glucose Level (Gluc): 95
*Potassium (K+): 4.3 (+0.3) IR
*Blood Sodium (NA+): 139 (-2) IR
*Protein (Prot): 6.7 (-0.2) IR
*Magnesium (MG): 2.2 (+0.2) IR
*Phosphorous (Phos): 3.7 (+0.4) IR
*BK Virus (BK): NC
*Cytomeglovirus (CMV): NC
IR= In Range NC= Not Checked
-The Creatinine is continuing to drop nicely. Every week has shown a steady decrease in this value.
-My Lymphocytes continue to struggle after that recent plunge from 11.9 down to 2.0. As previously stated, getting this to increase is just a matter of time.
-The RBC's still lag behind the HCT and Hemo. Despite this, I am feeling a bit stronger every week.
-I had a really nice drop in the BUN! The top end of the range for this lab value is 20, so having a 7 point drop is fantastic!
All in all, decent labs yesterday. Nine of the labs are in the right range, and I anticipate the rest falling in line over the next month or so.
-For now, I will continue doing weekly labs. Once the Tac is gone and my Creatinine drops, this schedule will likely decrease to every other week, then once per month.
I was supposed to see my local nephrologist yesterday, but his office called last week to reschedule my appointment to Wednesday, August 29th.
I have set a target date to start walking again. My strength is finally up enough--and will continue to improve--that I can plan on beginning on or around 01 September. At first, any distance I put in will be dictated by how fast I tire. I will try each day I walk to increase my distance even if just a small bit.
Along this line, I wrote up a plan for improving my physical strength. It is as follows:
"10 Steps for Getting Back in Shape"
1) Start daily walks as tolerated.
2) Increase walking speed, distance and/or time as strength and stamina allow.
3) Drink plenty of water. Eat properly.
4) As abdomen heals, do more around the house as tolerated.
5) By Spring 2019, be walking at least 5 miles in a decent time (and utilizing anaerobic respirations).
6) When abdominal pain lessens, begin core exercises, as tolerated.
7) By Summer 2019, walk 8 miles in decent time; be doing numerous core exercises and begin light weight training.
8) By Fall 2019, walk 8 miles in one hour; be doing numerous core exercises for longer periods/greater reps and be at a moderate level in weight training.
9) By January 2020, continue walking goal, core exercises and increase weight training to a difficult level.
10) By Summer 2020, be fit, strong, in excellent cardiovascular shape and feeling fantastic!
*I have no specific weight goals due to my bodies inherent tendency to pack on muscle, which weighs more.
All of the above is contingent on no further setbacks with my kidney or my health. Being in great shape helps you to feel better, require less sleep and gives you greater self confidence.
**This schedule is also created to reflect how my body adapts to increasing levels of exercise. (I have been through a similar regimen in the past.) While suitable for me, this could actually be dangerous for someone else. Please consult a physician for an exercise program that is right for you!
Also, when walking/exercising, it takes from 15-20+ minutes for the body to go from aerobic respirations (using oxygen to help power the body and burn energy) to being in anaerobic respirations (the body burns fat to power the body and exercising). The longer you can be in anaerobic respirations, the better.
In other news, my headaches have finally entered a slow-down stage. I have continued to adjust my jaw at night whenever I lay on my R side, and this seems to be a huge help! While the headaches are still present, my T3 and Tylenol usage have both decreased.
I don't know how long this slowdown will last, but I welcome every day that has less headache intensity/severity.
Using daily Protonix has kept that nausea in check. At Kidney Clinic I mentioned what I was doing and both the PA and Nephrologist supported my approach.
My sleep remains inconsistent. Most nights, I sleep rather furtively, with occasional nights of good, solid rest. The past week, I have been getting up ever hour and 25 minutes to empty my bladder. I can usually get back to sleep quickly; but not always. As a result of everything, I have been tired most days.
And speaking of my bladder...during the day, my body has been hanging on to fluids I take in; but at night, my body releases those fluids, which is why I have been getting up so frequently lately. I have no doubt that this will turn around to more of a normal daily fluid excretion schedule.
That should be all for today. If anything further of significance comes to mind I will add it to the end of this entry.
Have a terrific week!
Good Health to All!
ScottW
22 Aug: Yesterday evening it occurred to me that I needed to clarify a point on my exercise regimen that I have prepared for myself. I failed to note this because I know how this will progress. Unfortunately, I forgot to elucidate this for everyone else...
All of the exercises and walking will at first be as tolerated. As time goes on and my strength and stamina improve, I will increase the frequency of these daily exercises each week.
By Spring 2019, I want to be walking that five miles at least 3-4 times per week, and be doing the core exercises at least that much.
By Summer, be walking that eight miles 3-4 times per week, weight training 3-4 times each week and continue the core exercises at that same pace.
By Fall 2019, I hope to increase that walking frequency to 4-5 times per week, weight training at 5-6 times and the core exercises 5-6 times per week.
After this point, I will continue at this pace and possibly increase each exercise from time to time.
So let's start there...
At this stage, my Kidney Clinic visits typically go like this:
-Get called back; get my weight on the way to the exam room.
(*An important note...Whenever you are weighed at a doctor's office, be sure to remove your cell phone and anything else that is heavy in your pockets. Remove shoes if possible. This assures a more accurate weight. I usually go to clinic and doctor visits wearing lightweight clothing to help, as well. Plus, I always weigh myself in the morning, sans clothing, so I know my real weight.)
-Once in the room, I have my BP, Pulse Respiration rate and O2 Sats (saturation) measured. I will usually ask to wait about two minutes before these are taken so that (after walking) my heart rate and BP settle back towards a normal range.
-A Clinic PA will come in first. My current meds are reviewed, my weights, pulses and BP readings for the past time since my last visit are noted, and highs and lows of all are noted, as well. Any questions I have are asked, answered or written for physician review.
-A Clinic Pharmacist will occasionally come in to also review meds.
-Finally, a Clinic Nephrologist will come in, review the PA's visit, and give any additional instructions, change meds, etc.
Then the visit is over. Depending on patient volume on any given day, the total visit time can range from 45 minutes to two hours.
*Remember...this clinic schedule is for me and for my Kidney Clinic only. Other systems are highly likely to be different, so be sure to follow your clinic protocols.
Anyhow, my Clinic visit went well. For now, there are no changes to meds, and I was reminded that my labs settling down will just take time. With the Tac soon to be a thing of the past, it will be at least two additional months before we see the creatinine level reach its new low.
And speaking of labs, here are the latest...
*I have changed the order of the listed labs based on where each is listed on the readout. The only exceptions are the Tac, Creatinine and BK/CMV.
20 Aug 18 Labs:
*Tacrolimus (Tac): 2.0 (NC) Dropping
*Creatinine (Creat): 2.37 (-0.04) Dropping
*Hematocrit (HCT): 32.7 (-0.7) Low
*Hemoglobin (Hemo): 10.3 (-0.2) IR
*Lymphocytes (Lymph): 6.6 (-0.3) Extremely Low
*Lymphocytes ABS (Lymph ABS): 0.4 (NC) Very Low
*Neutrophils (Neut): 82.7 (+0.2) Extremely High
*Neutrophils ABS (Neut ABS): 4.9 (-0.2) IR
*Red Blood Cells (RBC): 3.58 (-0.01) Very Low
*White Blood Cells (WBC): 5.9 (-0.2) IR
*Blood Urea Nitrogen (BUN): 28 (-7) High
*Calcium (CA): 9.7 (-0.6) IR
*Glomerular Filtration Rate (GFR): 30 (+1) Extremely Low
*Blood Glucose Level (Gluc): 95
*Potassium (K+): 4.3 (+0.3) IR
*Blood Sodium (NA+): 139 (-2) IR
*Protein (Prot): 6.7 (-0.2) IR
*Magnesium (MG): 2.2 (+0.2) IR
*Phosphorous (Phos): 3.7 (+0.4) IR
*BK Virus (BK): NC
*Cytomeglovirus (CMV): NC
IR= In Range NC= Not Checked
-The Creatinine is continuing to drop nicely. Every week has shown a steady decrease in this value.
-My Lymphocytes continue to struggle after that recent plunge from 11.9 down to 2.0. As previously stated, getting this to increase is just a matter of time.
-The RBC's still lag behind the HCT and Hemo. Despite this, I am feeling a bit stronger every week.
-I had a really nice drop in the BUN! The top end of the range for this lab value is 20, so having a 7 point drop is fantastic!
All in all, decent labs yesterday. Nine of the labs are in the right range, and I anticipate the rest falling in line over the next month or so.
-For now, I will continue doing weekly labs. Once the Tac is gone and my Creatinine drops, this schedule will likely decrease to every other week, then once per month.
I was supposed to see my local nephrologist yesterday, but his office called last week to reschedule my appointment to Wednesday, August 29th.
I have set a target date to start walking again. My strength is finally up enough--and will continue to improve--that I can plan on beginning on or around 01 September. At first, any distance I put in will be dictated by how fast I tire. I will try each day I walk to increase my distance even if just a small bit.
Along this line, I wrote up a plan for improving my physical strength. It is as follows:
"10 Steps for Getting Back in Shape"
1) Start daily walks as tolerated.
2) Increase walking speed, distance and/or time as strength and stamina allow.
3) Drink plenty of water. Eat properly.
4) As abdomen heals, do more around the house as tolerated.
5) By Spring 2019, be walking at least 5 miles in a decent time (and utilizing anaerobic respirations).
6) When abdominal pain lessens, begin core exercises, as tolerated.
7) By Summer 2019, walk 8 miles in decent time; be doing numerous core exercises and begin light weight training.
8) By Fall 2019, walk 8 miles in one hour; be doing numerous core exercises for longer periods/greater reps and be at a moderate level in weight training.
9) By January 2020, continue walking goal, core exercises and increase weight training to a difficult level.
10) By Summer 2020, be fit, strong, in excellent cardiovascular shape and feeling fantastic!
*I have no specific weight goals due to my bodies inherent tendency to pack on muscle, which weighs more.
All of the above is contingent on no further setbacks with my kidney or my health. Being in great shape helps you to feel better, require less sleep and gives you greater self confidence.
**This schedule is also created to reflect how my body adapts to increasing levels of exercise. (I have been through a similar regimen in the past.) While suitable for me, this could actually be dangerous for someone else. Please consult a physician for an exercise program that is right for you!
Also, when walking/exercising, it takes from 15-20+ minutes for the body to go from aerobic respirations (using oxygen to help power the body and burn energy) to being in anaerobic respirations (the body burns fat to power the body and exercising). The longer you can be in anaerobic respirations, the better.
In other news, my headaches have finally entered a slow-down stage. I have continued to adjust my jaw at night whenever I lay on my R side, and this seems to be a huge help! While the headaches are still present, my T3 and Tylenol usage have both decreased.
I don't know how long this slowdown will last, but I welcome every day that has less headache intensity/severity.
Using daily Protonix has kept that nausea in check. At Kidney Clinic I mentioned what I was doing and both the PA and Nephrologist supported my approach.
My sleep remains inconsistent. Most nights, I sleep rather furtively, with occasional nights of good, solid rest. The past week, I have been getting up ever hour and 25 minutes to empty my bladder. I can usually get back to sleep quickly; but not always. As a result of everything, I have been tired most days.
And speaking of my bladder...during the day, my body has been hanging on to fluids I take in; but at night, my body releases those fluids, which is why I have been getting up so frequently lately. I have no doubt that this will turn around to more of a normal daily fluid excretion schedule.
That should be all for today. If anything further of significance comes to mind I will add it to the end of this entry.
Have a terrific week!
Good Health to All!
ScottW
22 Aug: Yesterday evening it occurred to me that I needed to clarify a point on my exercise regimen that I have prepared for myself. I failed to note this because I know how this will progress. Unfortunately, I forgot to elucidate this for everyone else...
All of the exercises and walking will at first be as tolerated. As time goes on and my strength and stamina improve, I will increase the frequency of these daily exercises each week.
By Spring 2019, I want to be walking that five miles at least 3-4 times per week, and be doing the core exercises at least that much.
By Summer, be walking that eight miles 3-4 times per week, weight training 3-4 times each week and continue the core exercises at that same pace.
By Fall 2019, I hope to increase that walking frequency to 4-5 times per week, weight training at 5-6 times and the core exercises 5-6 times per week.
After this point, I will continue at this pace and possibly increase each exercise from time to time.
Wednesday, August 15, 2018
Post-Transplant Update: 15 August 2018
After posting my last entry, I was discussing what I had said [in the blog] about my ongoing TMD headaches, and she reminded me that I had wanted to tell you a huge reason why they are so bad right now. So, I'll start this blog entry talking about that...
A huge aspect of Temporomandibular Dysfunction is stress on the ball joints of the jaw. To remind you, my TMD is centered on the R ball joint, and its ongoing muscular degeneration surrounding said joint. This causes my jaw to move an exceptional amount both left and right, creates loud pops when the joint settles into place and results in "band headaches" across the top of the head to the L joint. Additionally, neck tension can add significantly to the already-existing headaches which only intensifies and prolongs the headaches themselves.
Here is the typical 5-step TMD wind-up: 1) Jaw clenching/Chewing hard foods/Any untoward straining of the jaw/facial tension leads to 2) Muscular stress, which leads to 3) Muscular tension, which leads to 4) Muscular Pain/Bruxism which is the last step to 5) Intense headaches.
Now, over the past 15 months I have had:
-Four hospitalizations (28 days in total!)
-Two major surgeries (transplant, triple hernia repair)
-Two intubations (horrendous jaw stress!)
-Three bone biopsies
-Four renal biopsies
-Four renal angiograms
-Bladder catheter removal
-Two cardiac stress tests
-Multiple renal ultrasounds (all of which caused excessive abdominal pain!)
-One Neupogen shot (and very painful reaction)
-A long, ongoing and exceptionally painful surgical recovery
-A large number of painful IV placements
-Many, many in-hospital blood draws (most of which hurt)
-A host of other and varied tests, and a number of medication changes; all of which create stress on the body. (I'm positive that I am missing a few other items on this list, but...you get the picture.)
What all of the above listed things have in common is intense jaw clenching, pain and stress on my jaw. Essentially, I have had an extraordinary amount of factors that have put my jaw into an incredible amount of stress which all result in muscular tension which is focused in the muscles of the jaw. All that tension inevitably results in a huge increase of headache frequency and intensity. In fact, there is so much stress on my jaw that it cannot relax sufficiently to reduce the headaches all on its own.
When I was officially diagnosed (Dx) with TMD by the doctor who is now recognized as the leading authority in TMD research and treatment, he told me that he had never seen a jaw as stressed as mine was. In fact, of all of his research patients--of whom I was the last--the average time to get a patients' jaw to relax was about three weeks. For me, this was impossible. So much so that after an unsuccessful first year of efforts, he finally stated to me, "Forget my fee, this is personal. We are going to get your headaches to stop." It still took another full year for that to happen!
But the point is, that it did. And (again) they remained under control for ten years!
With all the terrible stress that my jaw has been subjected to ever since the transplant, it really in no wonder that I am having a tough time knocking the latest headache down.
So, though a bit redundant, that's a much better explanation of TMD and why it is so hard to stop the headaches once you have had prolonged stresses on the jaw.
A few days ago, I had a bit of a breakthrough that has helped the headaches to decrease somewhat. For years, whenever I laid on my R side to sleep, I have always heard the rushing of blood in my R ear, accompanied by the sound of my heartbeat. I'd never really thought much about it, and would just roll over to my L side because I would never hear the same thing when my head rested on the pillows. Well, I was laying in bed [earlier this week] trying to sleep with another terrible headache, that rushing beating sound reverberating in my R ear, when I had the thought that maybe my jaw was out of place. So, I rolled onto my L side...no sound. I then rolled back on my R side, and that loud sound instantly returned just as soon as my head settled onto the pillow. So, with that thought that my jaw might be out of place, I moved my jaw upward (towards the L) and the rushing and heartbeat suddenly stopped! So, while falling asleep, anytime I heard those sounds, I would move my jaw back into place; and continue to do this every night. Ever since then, my headaches have been less intense, and my medication usage has decreased.
Wow! After thirty plus years, I had made a new discovery about how to potentially reduce my TMD headaches! I had never even occurred to me that there was this correlation between the sounds in my ear and my jaw being displaced.
Maybe, just maybe, this tidbit might help others [who are reading this] who have severe TMD headaches.
Alright, let's move on...
My latest Kidney Clinic visit happened yesterday. Everything is looking good and heading in the right direction. There are no medication changes at this time, and no other issues that need addressing. My next visit with the clinic will be in five weeks.
This next Monday I have a visit with my local nephrologist, just to get him up to speed on everything. It is the restart of transitioning away from the Kidney Clinic; though I will still be going to clinic for at least two of three more months.
In last weeks' entry, I noted that my Tac reading should go down this week, and my latest labs certainly reflect this...
14 Aug 18 Labs:
*Tac: 2.0 (-1.5) Dropping, as anticipated
*Creat: 2.40 (-0.14) Dropping
*CA: 10.3 (+0.2) IR
*RBC: 3.59 (-0.07) Very Low
*WBC: 6.1 (-0.3) IR
*HCT: 33.4 (+0.5) Low
*Lymph: 6.9 (+4.9) Very Low
*Lymph ABS: 0.4 (+0.3) Very Low
*Neut: 82.5 (-3.5) Extremely High
*Neut ABS: 5.1 (-0.5) IR
*GFR: 29 (+2) Extremely Low
*BUN: 35 (-7) High
*Gluc: 99
*Phos: 3.3 (NC) IR
*Hemo: 10.5 (-0.3) IR
*K+: 4.0 (-0.2) IR
*NA+: 141 (NC) IR
*Prot: 6.9 (-0.3) IR
*Mg: 2.0 (-0.2) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
As highlighted above, let's go over a few labs.
The Tac drop was huge! Going down to just 0.5 mg per day has had the effect we anticipated. This should continue dropping incrementally.
With the drop in the Tac value, the Creatinine also decreased proportionally. This too should continue trending downward. I am hoping that the drop continues until the number holds steadily under 2.0.
Though the Hematocrit improved and the Hemoglobin holds steady, the RBC's are still lagging behind. While I do have increased energy, until the RBC's catch up, I will still be tired most of the time.
With the precipitous plunge last week in my Lymphocytes, I expected only a small increase in that value. To see a huge increase this week was a very unexpected, but most welcome development. Though I must still take great precautions, I can stop being so hypervigilant about protecting myself. I was told at clinic yesterday that this value may jump around for a bit longer before it stabilizes again.
That puzzle I was working on last week...I completed it by this past Monday; way ahead of when I thought I'd finish. This tells me that my brain is clearing up with the slight energy increase, and I am again starting to see patterns, recognize odd shapes and can concentrate on details better. This ability should continue to improve as I work on my next, extremely complicated puzzle; which I started yesterday afternoon.
I continue using the Protonix daily, and my nausea has remained minimal. The doctors at Kidney Clinic agreed with me that the nausea is most likely due to all the post-rejection meds I am on. So, I will continue using the Protonix until all the extra meds are gone, and the nausea decreases.
My weight has dropped a little since last week. This morning, it was down to 115.4 Kg; down from the weeks' high of 116.7 Kg. Hopefully, I will soon return to that recent low of 114.2 Kg, and continue downward from there.
In general, I am feeling better, overall. My energy is up slightly, my appetite has increased, my kidney is eliminating all the fluids I am drinking, the swelling in my feet is consistently better, there have been no incidences of diarrhea in weeks, my headaches are reduced somewhat and I just feel like I am on an upswing. Let's hope this remains the case for some time to come!
I think that's about all I have for today.
Have a great week!
Until next time...
Good Health to All!
ScottW
A huge aspect of Temporomandibular Dysfunction is stress on the ball joints of the jaw. To remind you, my TMD is centered on the R ball joint, and its ongoing muscular degeneration surrounding said joint. This causes my jaw to move an exceptional amount both left and right, creates loud pops when the joint settles into place and results in "band headaches" across the top of the head to the L joint. Additionally, neck tension can add significantly to the already-existing headaches which only intensifies and prolongs the headaches themselves.
Here is the typical 5-step TMD wind-up: 1) Jaw clenching/Chewing hard foods/Any untoward straining of the jaw/facial tension leads to 2) Muscular stress, which leads to 3) Muscular tension, which leads to 4) Muscular Pain/Bruxism which is the last step to 5) Intense headaches.
Now, over the past 15 months I have had:
-Four hospitalizations (28 days in total!)
-Two major surgeries (transplant, triple hernia repair)
-Two intubations (horrendous jaw stress!)
-Three bone biopsies
-Four renal biopsies
-Four renal angiograms
-Bladder catheter removal
-Two cardiac stress tests
-Multiple renal ultrasounds (all of which caused excessive abdominal pain!)
-One Neupogen shot (and very painful reaction)
-A long, ongoing and exceptionally painful surgical recovery
-A large number of painful IV placements
-Many, many in-hospital blood draws (most of which hurt)
-A host of other and varied tests, and a number of medication changes; all of which create stress on the body. (I'm positive that I am missing a few other items on this list, but...you get the picture.)
What all of the above listed things have in common is intense jaw clenching, pain and stress on my jaw. Essentially, I have had an extraordinary amount of factors that have put my jaw into an incredible amount of stress which all result in muscular tension which is focused in the muscles of the jaw. All that tension inevitably results in a huge increase of headache frequency and intensity. In fact, there is so much stress on my jaw that it cannot relax sufficiently to reduce the headaches all on its own.
When I was officially diagnosed (Dx) with TMD by the doctor who is now recognized as the leading authority in TMD research and treatment, he told me that he had never seen a jaw as stressed as mine was. In fact, of all of his research patients--of whom I was the last--the average time to get a patients' jaw to relax was about three weeks. For me, this was impossible. So much so that after an unsuccessful first year of efforts, he finally stated to me, "Forget my fee, this is personal. We are going to get your headaches to stop." It still took another full year for that to happen!
But the point is, that it did. And (again) they remained under control for ten years!
With all the terrible stress that my jaw has been subjected to ever since the transplant, it really in no wonder that I am having a tough time knocking the latest headache down.
So, though a bit redundant, that's a much better explanation of TMD and why it is so hard to stop the headaches once you have had prolonged stresses on the jaw.
A few days ago, I had a bit of a breakthrough that has helped the headaches to decrease somewhat. For years, whenever I laid on my R side to sleep, I have always heard the rushing of blood in my R ear, accompanied by the sound of my heartbeat. I'd never really thought much about it, and would just roll over to my L side because I would never hear the same thing when my head rested on the pillows. Well, I was laying in bed [earlier this week] trying to sleep with another terrible headache, that rushing beating sound reverberating in my R ear, when I had the thought that maybe my jaw was out of place. So, I rolled onto my L side...no sound. I then rolled back on my R side, and that loud sound instantly returned just as soon as my head settled onto the pillow. So, with that thought that my jaw might be out of place, I moved my jaw upward (towards the L) and the rushing and heartbeat suddenly stopped! So, while falling asleep, anytime I heard those sounds, I would move my jaw back into place; and continue to do this every night. Ever since then, my headaches have been less intense, and my medication usage has decreased.
Wow! After thirty plus years, I had made a new discovery about how to potentially reduce my TMD headaches! I had never even occurred to me that there was this correlation between the sounds in my ear and my jaw being displaced.
Maybe, just maybe, this tidbit might help others [who are reading this] who have severe TMD headaches.
Alright, let's move on...
My latest Kidney Clinic visit happened yesterday. Everything is looking good and heading in the right direction. There are no medication changes at this time, and no other issues that need addressing. My next visit with the clinic will be in five weeks.
This next Monday I have a visit with my local nephrologist, just to get him up to speed on everything. It is the restart of transitioning away from the Kidney Clinic; though I will still be going to clinic for at least two of three more months.
In last weeks' entry, I noted that my Tac reading should go down this week, and my latest labs certainly reflect this...
14 Aug 18 Labs:
*Tac: 2.0 (-1.5) Dropping, as anticipated
*Creat: 2.40 (-0.14) Dropping
*CA: 10.3 (+0.2) IR
*RBC: 3.59 (-0.07) Very Low
*WBC: 6.1 (-0.3) IR
*HCT: 33.4 (+0.5) Low
*Lymph: 6.9 (+4.9) Very Low
*Lymph ABS: 0.4 (+0.3) Very Low
*Neut: 82.5 (-3.5) Extremely High
*Neut ABS: 5.1 (-0.5) IR
*GFR: 29 (+2) Extremely Low
*BUN: 35 (-7) High
*Gluc: 99
*Phos: 3.3 (NC) IR
*Hemo: 10.5 (-0.3) IR
*K+: 4.0 (-0.2) IR
*NA+: 141 (NC) IR
*Prot: 6.9 (-0.3) IR
*Mg: 2.0 (-0.2) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
As highlighted above, let's go over a few labs.
The Tac drop was huge! Going down to just 0.5 mg per day has had the effect we anticipated. This should continue dropping incrementally.
With the drop in the Tac value, the Creatinine also decreased proportionally. This too should continue trending downward. I am hoping that the drop continues until the number holds steadily under 2.0.
Though the Hematocrit improved and the Hemoglobin holds steady, the RBC's are still lagging behind. While I do have increased energy, until the RBC's catch up, I will still be tired most of the time.
With the precipitous plunge last week in my Lymphocytes, I expected only a small increase in that value. To see a huge increase this week was a very unexpected, but most welcome development. Though I must still take great precautions, I can stop being so hypervigilant about protecting myself. I was told at clinic yesterday that this value may jump around for a bit longer before it stabilizes again.
That puzzle I was working on last week...I completed it by this past Monday; way ahead of when I thought I'd finish. This tells me that my brain is clearing up with the slight energy increase, and I am again starting to see patterns, recognize odd shapes and can concentrate on details better. This ability should continue to improve as I work on my next, extremely complicated puzzle; which I started yesterday afternoon.
I continue using the Protonix daily, and my nausea has remained minimal. The doctors at Kidney Clinic agreed with me that the nausea is most likely due to all the post-rejection meds I am on. So, I will continue using the Protonix until all the extra meds are gone, and the nausea decreases.
My weight has dropped a little since last week. This morning, it was down to 115.4 Kg; down from the weeks' high of 116.7 Kg. Hopefully, I will soon return to that recent low of 114.2 Kg, and continue downward from there.
In general, I am feeling better, overall. My energy is up slightly, my appetite has increased, my kidney is eliminating all the fluids I am drinking, the swelling in my feet is consistently better, there have been no incidences of diarrhea in weeks, my headaches are reduced somewhat and I just feel like I am on an upswing. Let's hope this remains the case for some time to come!
I think that's about all I have for today.
Have a great week!
Until next time...
Good Health to All!
ScottW
Tuesday, August 7, 2018
Post-Transplant Update: 07 August 2018
**Remember, folks, this blog reflects only MY experience with PCKD, Dialysis, Transplant and Post-transplant life. My case has been unusual, so if you are dealing with PCKD and everything surrounding the disease, please always consult with your doctors and other healthcare providers for the treatments and medications that are best for you!
Last night was the last time I am taking Tacrolimus in the evening.
Why? Because this afternoon, I am having my monthly Belatacept infusion, which also marks the day I reduce my daily Tac dosage by half (to 0.5 mg). For the next month I will only be taking Tac in the morning. Then, the day after my September infusion, the Tac will be gone for good!
Ahead of todays' infusion, I thought I'd go ahead and post the latest labs earlier in the blog than usual...
06 Aug 18 Labs
*Tac: 3.5 (-0.1) Dropping
**Next week I should see a large drop in the Tac level due to the reduction of the med as discussed above.
*Creat: 2.54 (+0.19) Slight rise
*CA: 10.1 (+0.2) IR
*RBC: 3.60 (+0.26) Very Low
*WBC: 6.4 (+0.2) IR
*HCT: 33.9 (+2.1) Low
*Lymph: 2.0 (-9.8) Extremely Low
*Lymph ABS: 0.1 (-0.6) Extremely Low
*Neut: 86 (+4.1) Extremely High
*Neut ABS: 5.6 (+0.5) IR
*GFR: 27 (-3) Extremely Low
*BUN: 46 (+8) Very High
*Gluc: 106
*Phos: 3.3 (+0.2) IR
*Hemo: 10.8 (+0.8) IR
*K+: 4.2 (-0.1) IR
*NA+: 141 (NC) IR
*Prot: 7.2 (+0.6) IR
*MG: 2.2 (+0.2) IR
*BK: Not Detected
CMV: Not Detected
*NC= No Change IR= In Range
There is some movement in my labs this week; some good, some not so much. As highlighted above, I thought I'd address these areas. First, the Hematocrit and the Hemoglobin. Both saw terrific rises in the numbers. This is the second week in a row the HCT saw a large increase, which is fantastic! Plus, the Hemo rising 0.8 to 10.8 is also great. The only issue I need to keep an eye on is that this doesn't go much above 11.0 until the doctors want to see it go higher.
This is because regulating the Hemo is important to avoid an imbalance between the Hemo and the RBC's. So, until the RBC's catch up, this value must be watched.
Speaking of the RBC's, there was another small increase. Though still well below the target range, it is slowly rising.
Second, the wonderful increase I saw last week in my Lymphocytes and Lymph ABS was short-lived as both lab values plummeted to extremely bad numbers. I don't know why such a drop would have occurred, especially considering the steady progress these had made since the anti-thymo treatment wore off. No matter the cause, I will go back to being hypervigilant about my immune system health.
I am hoping the decrease, along with other labs that went slightly askew, is (are) the result of needing my next infusion of Belatacept. With the main anti0rejection med being at a low point, I am purely speculating that that is why my numbers are off. Again, this is completely uneducated speculation on my part.
Time will tell me if this is a trend as I take labs subsequent to the monthly Belatacept infusions in the months ahead.
Now, on to other things...
The TMD headache I mentioned in my last blog entry continues unabated. With an average pain level of a solid seven, I continue to be unsuccessful in reducing the intensity or nature of the ongoing headache.
Before I got my TMD headaches under control back in the early 2000's, my headaches went through what I referred to as "cycles" in both the intensity and duration of the headaches. Those would last anywhere from a few weeks to six months, and at an average scale of an eight, before I got even one day of rest from the headaches.
It seems that I am once again in one of those cycles where the intensity and duration both increase. Pain meds help alleviate the pain, but do not eliminate the headaches themselves. As I have stated several times before, doing that will simply take time. As I did before, I must utilize all the tools I have to battle the TMD into submission. Doing this includes: Wearing my NTI devices at night; Keeping my jaw in alignment as best as possible; Avoiding hard or chewy foods; Relaxing my head, shoulders, abdomen, arms, legs and back as much as possible, and Keeping my eyes relaxed by wearing sunglasses any time the outside light is too bright--yes, even rainy days have intense light that requires me to wear sunglasses. Additionally, I will be employing the use of acupuncture to relieve muscle stress in my head. *(I've used acupuncture before, which is when I had the TMD under complete control for ten years.)
So, once again, getting the TMD to fade into the background will just take time, and being patient while that happens is an absolute must!
443p...It's now later in the afternoon, and I just returned from my infusion of Belatacept. Everything went well, so I don't expect anything untowards happening as a result of the treatment.
My sleep has been OK for the most part. I once again have my dreams under control which helps improve the quality of sleep. However, I had a setback in sleeping in a totally dark room again, so now must have a light on that shines just a little light so that the dark is not pitch black, and avoid waking up in cold sweats again. I'd been just fine for a number of months, but on a recent visit to relatives, the room I slept in was totally black at night, I was unfamiliar with the layout of the house, and the fear I had when I'd awoken in the middle of the night (in complete darkness) unable to breathe because of fluid in my lungs, all came flooding back; so now I have to get used to complete darkness once more.
My appetite is slowly improving. With my overall energy up a touch, I am starting to use more of that energy, so an increase in my food intake has quickly followed. Granted, I'm not yet eating a lot more; but I am eating more.
I started using the Protonix again. I had been instructed to either go off the med, or use in every other night, or however my body needed. Well, after a couple of weeks without the med, I began having low-grade, unending nausea. This slowly increased until I was having to take Zofram (anti-emetic) two or three times each day to control the nausea. This led me to restart the Protonix about two weeks ago. At first, I took the once per day dose every other day. This helped, but did not eliminate the nausea. After a week, I decided to try taking the Protonix every morning. This has almost eliminated the nausea.
Last year, three months after my transplant I was removed from the Protonix entirely, and had zero ongoing nausea.
This year, after the rejection in March/April and having my immune system crashed again, the nausea has continued. I am hoping that I can wean myself off the med without setting off more nausea. We'll see.
My weight has been slowly falling. I still have Prednisone weight to lose, but that is coming off. About two weeks ago I saw my weight drop to 114.2Kg. It was short-lived unfortunately, and I quickly shot back up to 116.5 Kg. As of this AM, I weighed in at 115.8 Kg. It's getting there...
With my energy increasing, I am once again able to work on puzzles. I am currently about 50% done with an extremely difficult puzzle, and expect to finish that within two weeks. Though I am not yet reading a book every day, I am finally reading more news stories online. As my energy increases, so too will my ability to concentrate on whatever I am reading, or puzzles I am working on, and avoid falling asleep.
This is definitely a good thing!
And...I think that is all I have for today. IF I think of anything else, I will amend this entry at the bottom of the page.
Until next time, enjoy the remainder of your summer!
Good Health to All!
ScottW
Last night was the last time I am taking Tacrolimus in the evening.
Why? Because this afternoon, I am having my monthly Belatacept infusion, which also marks the day I reduce my daily Tac dosage by half (to 0.5 mg). For the next month I will only be taking Tac in the morning. Then, the day after my September infusion, the Tac will be gone for good!
Ahead of todays' infusion, I thought I'd go ahead and post the latest labs earlier in the blog than usual...
06 Aug 18 Labs
*Tac: 3.5 (-0.1) Dropping
**Next week I should see a large drop in the Tac level due to the reduction of the med as discussed above.
*Creat: 2.54 (+0.19) Slight rise
*CA: 10.1 (+0.2) IR
*RBC: 3.60 (+0.26) Very Low
*WBC: 6.4 (+0.2) IR
*HCT: 33.9 (+2.1) Low
*Lymph: 2.0 (-9.8) Extremely Low
*Lymph ABS: 0.1 (-0.6) Extremely Low
*Neut: 86 (+4.1) Extremely High
*Neut ABS: 5.6 (+0.5) IR
*GFR: 27 (-3) Extremely Low
*BUN: 46 (+8) Very High
*Gluc: 106
*Phos: 3.3 (+0.2) IR
*Hemo: 10.8 (+0.8) IR
*K+: 4.2 (-0.1) IR
*NA+: 141 (NC) IR
*Prot: 7.2 (+0.6) IR
*MG: 2.2 (+0.2) IR
*BK: Not Detected
CMV: Not Detected
*NC= No Change IR= In Range
There is some movement in my labs this week; some good, some not so much. As highlighted above, I thought I'd address these areas. First, the Hematocrit and the Hemoglobin. Both saw terrific rises in the numbers. This is the second week in a row the HCT saw a large increase, which is fantastic! Plus, the Hemo rising 0.8 to 10.8 is also great. The only issue I need to keep an eye on is that this doesn't go much above 11.0 until the doctors want to see it go higher.
This is because regulating the Hemo is important to avoid an imbalance between the Hemo and the RBC's. So, until the RBC's catch up, this value must be watched.
Speaking of the RBC's, there was another small increase. Though still well below the target range, it is slowly rising.
Second, the wonderful increase I saw last week in my Lymphocytes and Lymph ABS was short-lived as both lab values plummeted to extremely bad numbers. I don't know why such a drop would have occurred, especially considering the steady progress these had made since the anti-thymo treatment wore off. No matter the cause, I will go back to being hypervigilant about my immune system health.
I am hoping the decrease, along with other labs that went slightly askew, is (are) the result of needing my next infusion of Belatacept. With the main anti0rejection med being at a low point, I am purely speculating that that is why my numbers are off. Again, this is completely uneducated speculation on my part.
Time will tell me if this is a trend as I take labs subsequent to the monthly Belatacept infusions in the months ahead.
Now, on to other things...
The TMD headache I mentioned in my last blog entry continues unabated. With an average pain level of a solid seven, I continue to be unsuccessful in reducing the intensity or nature of the ongoing headache.
Before I got my TMD headaches under control back in the early 2000's, my headaches went through what I referred to as "cycles" in both the intensity and duration of the headaches. Those would last anywhere from a few weeks to six months, and at an average scale of an eight, before I got even one day of rest from the headaches.
It seems that I am once again in one of those cycles where the intensity and duration both increase. Pain meds help alleviate the pain, but do not eliminate the headaches themselves. As I have stated several times before, doing that will simply take time. As I did before, I must utilize all the tools I have to battle the TMD into submission. Doing this includes: Wearing my NTI devices at night; Keeping my jaw in alignment as best as possible; Avoiding hard or chewy foods; Relaxing my head, shoulders, abdomen, arms, legs and back as much as possible, and Keeping my eyes relaxed by wearing sunglasses any time the outside light is too bright--yes, even rainy days have intense light that requires me to wear sunglasses. Additionally, I will be employing the use of acupuncture to relieve muscle stress in my head. *(I've used acupuncture before, which is when I had the TMD under complete control for ten years.)
So, once again, getting the TMD to fade into the background will just take time, and being patient while that happens is an absolute must!
443p...It's now later in the afternoon, and I just returned from my infusion of Belatacept. Everything went well, so I don't expect anything untowards happening as a result of the treatment.
My sleep has been OK for the most part. I once again have my dreams under control which helps improve the quality of sleep. However, I had a setback in sleeping in a totally dark room again, so now must have a light on that shines just a little light so that the dark is not pitch black, and avoid waking up in cold sweats again. I'd been just fine for a number of months, but on a recent visit to relatives, the room I slept in was totally black at night, I was unfamiliar with the layout of the house, and the fear I had when I'd awoken in the middle of the night (in complete darkness) unable to breathe because of fluid in my lungs, all came flooding back; so now I have to get used to complete darkness once more.
My appetite is slowly improving. With my overall energy up a touch, I am starting to use more of that energy, so an increase in my food intake has quickly followed. Granted, I'm not yet eating a lot more; but I am eating more.
I started using the Protonix again. I had been instructed to either go off the med, or use in every other night, or however my body needed. Well, after a couple of weeks without the med, I began having low-grade, unending nausea. This slowly increased until I was having to take Zofram (anti-emetic) two or three times each day to control the nausea. This led me to restart the Protonix about two weeks ago. At first, I took the once per day dose every other day. This helped, but did not eliminate the nausea. After a week, I decided to try taking the Protonix every morning. This has almost eliminated the nausea.
Last year, three months after my transplant I was removed from the Protonix entirely, and had zero ongoing nausea.
This year, after the rejection in March/April and having my immune system crashed again, the nausea has continued. I am hoping that I can wean myself off the med without setting off more nausea. We'll see.
My weight has been slowly falling. I still have Prednisone weight to lose, but that is coming off. About two weeks ago I saw my weight drop to 114.2Kg. It was short-lived unfortunately, and I quickly shot back up to 116.5 Kg. As of this AM, I weighed in at 115.8 Kg. It's getting there...
With my energy increasing, I am once again able to work on puzzles. I am currently about 50% done with an extremely difficult puzzle, and expect to finish that within two weeks. Though I am not yet reading a book every day, I am finally reading more news stories online. As my energy increases, so too will my ability to concentrate on whatever I am reading, or puzzles I am working on, and avoid falling asleep.
This is definitely a good thing!
And...I think that is all I have for today. IF I think of anything else, I will amend this entry at the bottom of the page.
Until next time, enjoy the remainder of your summer!
Good Health to All!
ScottW
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