Things have been looking up, for the most part.
I had my follow-up visit with the Oncologist last week, and it went quite well. He had looked through my lab results of the past year, so he was very familiar with my progress from that standpoint. The doctor had no concerns about me, and stated that there would be no need for further visits unless we see some random spike of my white blood count.
Now THAT is a doctor visit that I like!
Following that appointment, I had to run a number of errands that took several hours in total. By the time I arrived home, I still had some energy--which was great! Plus, the following day, I was tired, but not exhausted!
This illustrates that my energy and stamina are indeed increasing, which gives me a lot of hope that the future is getting better and better.
On the flip-side, my headaches have been terrible. My TMD is definitely being obstinate about settling back down! However, I have also had days that there was minimal TMD involvement at all, and some headaches more apparently due to the Isosorbide and Protonix than anything else.
Now, the casual observer may say, 'How do you know when your TMD is better or worse?; which is a fair question, and which I do not recall if I have ever fully shared...
My TMD is centered on the R ball joint of my jaw, with the muscles which hold the joint in place deteriorating, which allows the joint to move out of position. When not in proper alignment, the joint moves a good bit out of place. This movement can result in extreme muscle fatigue over and above the ball joint (and creates pain on palpation of the joint area), physical clunking of the joint whenever I chew--or even open my mouth very wide--clicking of the joint when I talk, hard and painful clunking of the joint whenever I move my jaw from side to side, auditory and visual (light) sensitivity and excessive side to side movement of my jaw whenever I eat.
All of this can happen simultaneously during the worst headaches (that rank a 12 on a scale of 1-10), or with just one or several contributors at any given time during my "normal" headaches.
There is no rhyme or reason for one, a few or even all of these contributors happening at any given time. They just happen. When the headaches are under control, my NTI occlusive devises help to prevent the underlying muscular tension. The trick is to get the headaches to stop flaring up in the first place; which I have done before. Remember, I had my TMD under complete control for ten years, so I know that it can be done again.
Removing the suspected med contributors of Isosorbide and Protonix could give me a better indication of how the TMD is all by itself. Assuming I can go off of both meds, it will likely be a week or more before the side effects of both meds are no longer contributing to my headaches. Once we get there, I can finally see just how much the TMD is creating the headaches on an everyday basis.
So, after all of that, in answering the earlier question about knowing when the TMD is involved...after nearly 34 years of dealing with severe TMD, it is quite easy to differentiate between TMD and non-TMD headaches. For non-TMD involvement, my jaw clunks lightly, or not at all; either during chewing or any side to side movement. I am not audio or photosensitive. I can press on the R ball joint and it does not hurt either during the pressure, or immediately following. And a dose of Excedrin or Tylenol completely blocks the pain, and it does not return.
Plus, there are two intangibles:
First, TMD headaches have a certain feel that is unlike any other headache. It is difficult to put into words, but the difference is obvious. Second, my worst TMD headaches actually have a taste to them that is as real as the flavors of putting food into your mouth. In essence, it is sort of a faint metallic-type taste that is diffuse, but definitely there, and with no apparent source; and until the severe headaches die down, it is constantly present. And THAT is how I tell whether or not there is TMD involvement in my everyday headaches.
And on that front, I have my next follow-up visit with my Cardiologist on Halloween day, 31 October. We will discuss continued use of both the Isosorbide and the Protonix, and
I will remind him that my heart was healthy once more after just six months following my transplant; and all water [from the central lines during dialysis] in the atria was resolved. The additional time on the Isosorbide was purely precautionary, as well as giving my heart additional time to strengthen.
Preceding that appointment, I have my next lab draw and Belatacept Infusion on Tuesday, 29 October. As the Cardiologist visit is just two days later, I will wait until Friday, 01 November to do my next blog entry.
Again, I do not remember if I have so fully explained TMD before, and if I have, then please accept my apologies. If not, now you have a better basic understanding of this condition.
My urinary output has been up and down since my last blog entry; but I have lost weight overall, by about 1.5 kg. I had gotten down to 124.9 Kg two days ago, but each of the last two days I have retained water, and my weight this morning was 125.6 Kg.
My appetite has been good, but I have chosen to eat only to being 'satisfied' and not eating so much that my current activity level will not burn off all of the sugars and calories I take in.
My water intake remains at about 2.5 Liters each day, plus another 30 or so ounces of other fluids, for a daily total fluid intake of approximately 3.25 Liters.
Though I remain tired most of the time, my sleep has been good, my dreams under control, and I am usually able to get right back to sleep after awaking to relieve my bladder (from 2-4 times each night).
So, not bad. I am seeing definite overall improvement, and my brain seems to be shifting again with more positivity, and an increasing desire to start working out again. If I can get my feet to be pain-free, then I can easily, readily do both.
And...there you have it for today.
I hope that each person reading my blog is having a good day...even if 'good' is the best you can manage because of how you are feeling!
Again, my next entry will wait until around 01 November following my next lab results, Infusion and the upcoming Cardiologist visit. Until then...
Good Health to All!
ScottW
Monday, October 21, 2019
Wednesday, October 9, 2019
Attention Pre and Post-Transplant Patients: 2019/2020 Flu Season Warning
For any pre or post-Transplant patients out there, please read the following article that I just read! It gives a terrific explanation of the severity of this years' flu strains, and why it is so important that at-risk patients (such as transplant patients) receive the vaccine as soon as you can. Also, the molecular biology of the flu is illustrated, and what the future holds for a world wide effort to combat the yearly flu strains. Please read...
2019 Flu Season Will be Deadlier — Here's Why
Dr. Marc Siegel, opinion contributor
(09 October 2019)
"A patient came to me with muscle aches, fever, severe fatigue and nasal congestion. I recognized the classic symptoms right away and tested her for flu, though it was still early September and I wasn't expecting to see flu yet. I sent an electronic prescription for an anti-viral drug to her pharmacy and told her to start taking it. The flu test came back positive and she was bed-ridden for a week, and then slowly recovered.
This year promises to be a particularly bad flu season. We look to Australia to predict what will happen here, since their winter - flu season - is our summer. Australia was hit particularly hard this year; with more than 300,000 confirmed cases and a severe form of Influenza A H3N2 predominating.
Last year, also a bad flu season, there were more than 500,000 hospitalizations from flu in the U.S., with more than 50,000 deaths. This year looks like it could be worse.
The flu is a rapidly mutating virus because it is made up of a single strand of genetic material known as RNA (ribonucleic acid), which is not capable of repairing itself, so that the mutations are copied. This is why there are so many strains or subtypes of flu out in the community, and why we are not perfectly defended against this virus even when we take flu vaccine.
U.S. scientists determine the exact makeup of the yearly flu vaccine by looking to other countries where flu happens first, including Australia. The yearly flu vaccine generally covers between two to four prevailing strains but is imperfect because it's primarily made by culturing the flu virus in billions of hen's eggs.
This process may take several months so that, by the time flu emerges here, it has frequently mutated to a subtype that isn't a perfect match for the vaccine. Nevertheless, the flu shot is always worth getting for several reasons.
First, it decreases the amount of circulating flu virus. Second, it decreases the severity of flu, even if it isn't completely effective in preventing it; if you have a milder case, your immune system is stronger and you are less likely to suffer a devastating complication, such as pneumonia or a heart attack.
There are two main proteins on the surface of the flu molecule: hemagglutinin and neuraminidase. Hemagglutinin, a spike-shaped protein, attaches the flu to the host cell and neuraminidase cleaves the flu off the cell when it is ready to jump to a neighboring cell. Flu drugs like, Tamiflu block neuraminidase, thereby decreasing its spread. Flu vaccines mainly target hemagglutinin.
Flu shots are made using inactivated (killed) flu viruses, so you cannot get the flu from a flu shot. A young baby or elderly person with chronic illness is less likely to get the flu if more people are immunized.
The future of fighting flu is to be found in the universal flu vaccine, which is being studied in National Institutes of Health-approved trials. Dr. Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases and one of the top experts in the country, told me in an interview that one promising candidate targets the stem rather than the surface of the hemagglutinin molecule. This is significant because the stalk is very similar from one flu molecule to the next.
A universal flu vaccine will change the game entirely. It will be used against most if not all strains - and it could be an effective defense against a "weaponized" bioengineered flu spread by terrorists, to which we otherwise would have zero immunity.
I look forward to a future where my patients aren't healthy one minute and exhausted with a fever and muscle aches the next. The flu is a formidable foe and we need a formidable defense against it."
Thursday, October 3, 2019
Post-Transplant Update: 03 October 2019
Good news on my latest lab results; let's take a look...
01 Oct 19 Labs:
*Creat: 2.60 (+0.16)
*HCT: 36.6 (-0.4) IR
*Hemo: 11.6 (+0.2) IR
*Lymph: 13.8 (+7.9) Low
*Lymph ABS: 0.9 (+0.4) Low
*Neut: 77.9 (-3.3) High
*Neut ABS: 5.2 (-0.4) IR
*RBC: 4.1 (+0.15) Very Low
*WBC: 6.6 (-0.3) IR
*BUN: 37 (-2) Extremely High
*CA: 9.0 (NC) IR
*GFR: 26 (NC) Extremely Low
*Gluc: 98
*K+: 4.6 (+0.2) IR
*NA+: 138 (NC) IR
*MG: 2.0 (NC) IR
*Phos: 3.5 (+0.1) IR
NC= No Change IR= In [Desired] Range
The good news mostly revolves around three key results: the Hematocrit, Lymphocytes/Lymph ABS and the Red Blood Cells. All three of these are up.
I am happiest about the rebound of the Lymphocytes from 5.4 to the current 13.8. I was worried that there would be another drop in my immune system, putting me at further risk. Though still slightly lower than what we want as the low end of the scale (15.5), at least now I can relax a bit whenever I am out and about.
The Lymph and Lymph ABS go hand in hand; so as one rises, so does the other.
My Red Cell count also rose nicely, going above 4.0 once again. Though there is still a ways to go before hitting the minimal 4.50 reading, it looks like the RBC production is back. Let's hope for another increase in a month.
The stability of my Urinalysis is exceptional! The kidney continues to filter properly, and along with most of the results above, seems to be performing its functions well as it communicates with other systems.
Lastly, my Calcium was stable yet again. This is terrific news!
A few hours following my lab draw, I had my Belatacept infusion. The stick/cannulation went well, though it was painfully placed in the crook of the Left wrist due to the nurses wanting to let my lower arm veins rest for another month following the rough ER stick that left my arm bruised. Other than that, the Infusion went well, and as in now normal, there have been zero appreciable side effects.
Next, my TMD headaches have been elevated again; though with the rough time my body had this past month [with the vertigo episode and flu shot side effects], I am not one bit surprised by this.
Though I had to use my strongest pain med twice last month, the T3/Excedrin combination has done well in keeping the headaches from exploding. With some toleration of pain on a number of days, I was able to use my T3 prescription over a full thirty days.
On this front, I discovered something that may be artificially contributing to my headaches. With a now clearer mind, I was reading over the side effects of my meds once again, and discovered that both the Protonix (for nausea associated with daily meds), and the Isosorbide (for strengthening the heart) have the probability of increasing headaches.
Now, this does not eliminate the TMD involvement whatsoever. The indication for this are unmistakable. However, these two meds may very well be exacerbating the severity of my headaches.
Based on previous experience, I cannot eliminate the Protonix without also eliminating the Isosorbide. To that end, I have a follow-up appointment with my Cardiologist on Halloween Day, 31 October. While there, I am going to discuss the possibility of omitting the Isosorbide (and thus the Protonix), and replace the Iso with Atenolol, a BP med that I used for years, and which was well tolerated with few side effects.
IF I can do this, then there is a strong possibility that the intensity and overall frequency of my headaches will drop. THAT would be most welcomed!
I will let you know how that discussion goes.
My weight has been fairly stable, ranging from 124.5 Kg to 127.0 Kg over the last few weeks. This morning, I weighed in at 125.5 Kg.
As always, my nightly urinary voiding contributes to both the rises and falls in my weight. Last night, I got up three times and lost 1.7 Liters in total, which helped my weight decrease. Conversely, when I have nights that I get up less and only lose 800 cc's of fluid, then my weight either rises, or stays the same.
What I have found interesting on my nightly output is that, when voiding lots, my urine is very lite in color, with little odor; but when I void less, the color is yellow and carries a strong smell. I don't really know that this means much, other than the total nightly volume that is lost determines whether or not the urine is clear versus concentrated...at least that is MY observation.
And on this topic, my daily fluid intake has been consistent at 110-120 ounces. The majority of this fluid is water--about 70%-76% of total intake; which is excellent.
As I have discussed previously, I need to keep my current fluid intake in the above range so that the kidney can keep up. However, once I am able to be more active and begin losing fluids via sweating (Evaporation and Radiation), and increased and deeper breathing while exercising (Respiration)--these represent 3 of the 5 methods of heat loss, which also includes fluid loss, too--then I can increase my fluid intake simply because I'll be using more fluids that do not exit my body via the kidney.
My sleep has been, for the most part, pretty good. Most nights I have been getting between 6-8 hours, though the restfulness of that sleep is not always the best. This of course leaves me feeling tired, but I push through as best as I am able.
Also, my dreams have been completely in my control, and I can still subconsciously trigger myself awake in the rare event of dreaming something that I can't alter. I had an instance of this happening about a week ago, and I don't know why I triggered myself awake.
I remember suddenly waking up in the middle of the night (having had no bad dreams) and asking myself, "Why did I trigger myself to wake up? I wasn't have a bad dream." I do not remember the dream, but I know it wasn't anything terrible. So obviously, my subconscious wanted to avoid something.
My energy and endurance are increasing only incrementally. The process is so slow and laborious that I don't even notice the increases until I have a day that does not leave me exhausted, and I suddenly realize that I did better than expected on that particular day.
So, remember...patience. Always patience.
Next up on my calendar, I have a two-year follow-up with my Oncologist on the 17th, just to discuss how I am doing, and whether or not I should have more tests. After that, my Labs and Belatacept Infusion on the 29th (remember, both are every 28 days; so October and May will usually have two Lab Draws/Infusions in one calendar month). Then, that Cardiologist visit on the 31st. Of course, I will let you know how all appointments go.
That's all I have for now.
Good Health to All!
ScottW
01 Oct 19 Labs:
*Creat: 2.60 (+0.16)
*HCT: 36.6 (-0.4) IR
*Hemo: 11.6 (+0.2) IR
*Lymph: 13.8 (+7.9) Low
*Lymph ABS: 0.9 (+0.4) Low
*Neut: 77.9 (-3.3) High
*Neut ABS: 5.2 (-0.4) IR
*RBC: 4.1 (+0.15) Very Low
*WBC: 6.6 (-0.3) IR
*BUN: 37 (-2) Extremely High
*CA: 9.0 (NC) IR
*GFR: 26 (NC) Extremely Low
*Gluc: 98
*K+: 4.6 (+0.2) IR
*NA+: 138 (NC) IR
*MG: 2.0 (NC) IR
*Phos: 3.5 (+0.1) IR
NC= No Change IR= In [Desired] Range
*Urinalysis:
Appearance: Normal
Color: Normal
Glucose, UR: Negative
Hgb,UR: Negative
Ketones, UR: Negative
Leuk Esterase: Negative
Nitrite: Negative
pH, Urine: 6.0 (Normal Range is 5.0-8.5)
Prot, UR: Negative
Specific Gravity, Urine: 1.013 (Normal Range is 1.003-1.030)
*Once again, all U/A readings are exactly the same for--I think--the fourth month in a row!
The good news mostly revolves around three key results: the Hematocrit, Lymphocytes/Lymph ABS and the Red Blood Cells. All three of these are up.
I am happiest about the rebound of the Lymphocytes from 5.4 to the current 13.8. I was worried that there would be another drop in my immune system, putting me at further risk. Though still slightly lower than what we want as the low end of the scale (15.5), at least now I can relax a bit whenever I am out and about.
The Lymph and Lymph ABS go hand in hand; so as one rises, so does the other.
My Red Cell count also rose nicely, going above 4.0 once again. Though there is still a ways to go before hitting the minimal 4.50 reading, it looks like the RBC production is back. Let's hope for another increase in a month.
The stability of my Urinalysis is exceptional! The kidney continues to filter properly, and along with most of the results above, seems to be performing its functions well as it communicates with other systems.
Lastly, my Calcium was stable yet again. This is terrific news!
A few hours following my lab draw, I had my Belatacept infusion. The stick/cannulation went well, though it was painfully placed in the crook of the Left wrist due to the nurses wanting to let my lower arm veins rest for another month following the rough ER stick that left my arm bruised. Other than that, the Infusion went well, and as in now normal, there have been zero appreciable side effects.
Next, my TMD headaches have been elevated again; though with the rough time my body had this past month [with the vertigo episode and flu shot side effects], I am not one bit surprised by this.
Though I had to use my strongest pain med twice last month, the T3/Excedrin combination has done well in keeping the headaches from exploding. With some toleration of pain on a number of days, I was able to use my T3 prescription over a full thirty days.
On this front, I discovered something that may be artificially contributing to my headaches. With a now clearer mind, I was reading over the side effects of my meds once again, and discovered that both the Protonix (for nausea associated with daily meds), and the Isosorbide (for strengthening the heart) have the probability of increasing headaches.
Now, this does not eliminate the TMD involvement whatsoever. The indication for this are unmistakable. However, these two meds may very well be exacerbating the severity of my headaches.
Based on previous experience, I cannot eliminate the Protonix without also eliminating the Isosorbide. To that end, I have a follow-up appointment with my Cardiologist on Halloween Day, 31 October. While there, I am going to discuss the possibility of omitting the Isosorbide (and thus the Protonix), and replace the Iso with Atenolol, a BP med that I used for years, and which was well tolerated with few side effects.
IF I can do this, then there is a strong possibility that the intensity and overall frequency of my headaches will drop. THAT would be most welcomed!
I will let you know how that discussion goes.
My weight has been fairly stable, ranging from 124.5 Kg to 127.0 Kg over the last few weeks. This morning, I weighed in at 125.5 Kg.
As always, my nightly urinary voiding contributes to both the rises and falls in my weight. Last night, I got up three times and lost 1.7 Liters in total, which helped my weight decrease. Conversely, when I have nights that I get up less and only lose 800 cc's of fluid, then my weight either rises, or stays the same.
What I have found interesting on my nightly output is that, when voiding lots, my urine is very lite in color, with little odor; but when I void less, the color is yellow and carries a strong smell. I don't really know that this means much, other than the total nightly volume that is lost determines whether or not the urine is clear versus concentrated...at least that is MY observation.
And on this topic, my daily fluid intake has been consistent at 110-120 ounces. The majority of this fluid is water--about 70%-76% of total intake; which is excellent.
As I have discussed previously, I need to keep my current fluid intake in the above range so that the kidney can keep up. However, once I am able to be more active and begin losing fluids via sweating (Evaporation and Radiation), and increased and deeper breathing while exercising (Respiration)--these represent 3 of the 5 methods of heat loss, which also includes fluid loss, too--then I can increase my fluid intake simply because I'll be using more fluids that do not exit my body via the kidney.
My sleep has been, for the most part, pretty good. Most nights I have been getting between 6-8 hours, though the restfulness of that sleep is not always the best. This of course leaves me feeling tired, but I push through as best as I am able.
Also, my dreams have been completely in my control, and I can still subconsciously trigger myself awake in the rare event of dreaming something that I can't alter. I had an instance of this happening about a week ago, and I don't know why I triggered myself awake.
I remember suddenly waking up in the middle of the night (having had no bad dreams) and asking myself, "Why did I trigger myself to wake up? I wasn't have a bad dream." I do not remember the dream, but I know it wasn't anything terrible. So obviously, my subconscious wanted to avoid something.
My energy and endurance are increasing only incrementally. The process is so slow and laborious that I don't even notice the increases until I have a day that does not leave me exhausted, and I suddenly realize that I did better than expected on that particular day.
So, remember...patience. Always patience.
Next up on my calendar, I have a two-year follow-up with my Oncologist on the 17th, just to discuss how I am doing, and whether or not I should have more tests. After that, my Labs and Belatacept Infusion on the 29th (remember, both are every 28 days; so October and May will usually have two Lab Draws/Infusions in one calendar month). Then, that Cardiologist visit on the 31st. Of course, I will let you know how all appointments go.
That's all I have for now.
Good Health to All!
ScottW
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