Post-Transplant Update: 20 November 2019

...and now to finish up.

I just returned from my visit with doctors at the Kidney Clinic. They agreed that I needed to be off of the Protonix simply because it is so hard on the kidney. It was also agreed that it was time to lose the Isosorbide, and replace that with a better BP med, Amlodipine (trade name Norvasc, common name Amlodipine Besylate). The dosage will be 10 mg 1x/day, and with my morning meds.

(from Drugs.com)

"Amlodipine is a calcium channel blocker that dilates (widens) blood vessels and improves blood flow.

Amlodipine is used to treat chest pain (angina) and other conditions caused by coronary artery disease.

Amlodipine is also used to treat high blood pressure (hypertension). Lowering blood pressure may lower your risk of a stroke or heart attack.

Amlodipine is for use in adults and children who are at least 6 years old."

As for side effects, the most commonly reported is that of peripheral edema of the feet. Though this does not always occur, the best way to treat that edema is by raising your feet above the level of your heart when you sleep...if you can tolerate doing this.
IF this med creates too much edema, we will try another.

Also, I can discontinue the Isosorbide immediately, and begin the Amlodipine tomorrow (Thursday) morning.

As far as the Protonix, I cannot just get rid of it. I must do a slow draw-down off the med over a period of about three weeks. So--as discussed with the doctor-- starting tomorrow, I will take one Protonix every other day for one week. On week two, I will reduce that to every three days. In week three, I will take one Protonix every four days, then be completely done with it.

I will let you know how things go with both meds.

Next, the doctor wants me to stop taking Sodium Bicarb tablets (2-25 mg tabs 2x/day) entirely. It was explained to me that the Sodium Bicarb (aka Baking Soda..literally) helps the blood maintain the proper pH balance. As my pH has been looking great, the elimination of the Sodium Bicarb should not affect my labs. IF it does, then I can always go back on these benign tablets once again.

I have a follow-up appointment at the Kidney Clinic in two weeks (04 Dec 19). We will go over my latest labs, and discuss my progress on the Amlodipine, the Sodium Bicarb and the Protonix draw-down. If we need to adjust anything, we will do it then.

In the meantime, as per usual, if I have any untoward side effects from the new med--including excessive peripheral edema--then I am to call my Clinic Coordinator.

So, I lose two meds, but pick up one. However, without the Sodium Bicarb, I am taking 28 fewer pills each week! I'll take that!

Overall, the Clinic doctors are very pleased with my progress, and hope, like I do, that the new med will help me get moving forward in my healing and strengthening once again.

Next week I have both my monthly lab draw, and my next Belatacept infusion. With the Thanksgiving holiday next week (and extended family in town), I may not get to updating my blog until later in the week; but I will try to get to it as soon as possible.

For my U.S. readers, I wish you all a Happy and enjoyable Thanksgiving!

For my international readers, I hope that you have a terrific week, and are safe in all that you do!

Good Health to All!

ScottW

Post-Transplant Update: 19 November 2019

Despite there being a sixteen day gap between blog entries, I am going to start this blog today (the 19th), but finish tomorrow afternoon for reasons I will explain. 
Let's get started...

I thought that I'd start with a bit of good news. My headaches have been on a definite down-cycle over the past week. In fact, there have been three or four days that I have only taken Excedrin, and the rest of the week I have only had to take one, maybe two T3's, and the rest of the day just OTC meds. There was even one day that I took one dose of Excedrin in the morning, and then nothing for the rest of the day!
As always, I don't ask why...I just enjoy [fairly] headache free days. And though I know it won't last long, the past week has been another indicator that the TMD will be under control once again in the near future.

The reason I have taken so long to get this update written is because my wife and I have been in the beginning stages of getting a home-based business up and running; and all of my time is either spent on that project, recuperating from my efforts and/or getting housework and cooking done. 
We decided to start this business because it is highly probable that my ability to find profitable work after a ten plus year gap in my employment, coupled with my ongoing recovery and in addition to my age, will be difficult, to say the least.

Next, my urinary output remains consistent, and my weight continues hovering between 125-126 Kgs. And as I had reported earlier, my daytime output still lags behind the evening and nighttime output. I've had three nights in a row now that have seen output totals of 1300cc's, 1700cc's and 1600cc's. So long as I get rid of all the fluid I take in each day (about 3.25-3.5 Liters), I am a happy camper!

With getting up two or three times each night, my sleep has been pretty good, overall. There are nights that I have a difficult time getting back to sleep, while other nights I am asleep almost as soon as my head hits the pillow. And my dreams remain completely under my control, so I am pretty sure that those bad looping dreams, and the ones in which I have zero control over what is happening, are now a thing of the past; and my conscious control of the subconscious has been firmly reestablished.
Just now, I realized that the further away I get from all of the tests, uncertainty, surgeries, dialysis treatments, vomiting, horrible nausea, etc, the greater control I gained over my dreams. Personally, I found that thought extremely interesting!

My energy level continues its agonizingly slow progress. However, I recently started having a strong desire to start working out again. Granted, I still cannot do much towards that; but having that desire rekindled is a fantastic sign that things are moving in the right direction, and that I am farther along in my recovery than I had thought.


Now, the reason I am starting this today and finishing tomorrow is because the doctors at the Kidney [Transplant] Clinic agreed with my Cardiologist that they should oversee my changing meds from the Isosorbide (and Protonix) to another BP med(s); and that appointment is tomorrow, 20 November. 
I will let you know how that discussion goes, and what the plan is so that I can start moving forward, physically, once again, and stop being so tired all of the time; as well as likely helping to reduce my non-TMD headaches.

And with that, I am going to end for today...

Post-Transplant Update: 03 November 2019

[Though a couple of days late] As promised, here is my latest update that includes my lab results and the visit with my cardiologist. Let's begin with labs...


29 Oct 19 Labs

*Creat:   2.41

*HCT:   36.8 (+0.2) IR

*Hemo:   11.8 (+0.2) IR

*Lymph:   10.8 (-3.0) Low

*Lymph ABS:   0.8 (-0.1) Low

*Neut:   6.2 (+1.0) IR

*Neut ABS:   81 (+3.1) High

*RBC:   4.15 (+0.05) Very Low

*WBC:   7.7 (+1.1) IR

*BUN:   34 (-3) Very High

*CA:   9.3 (+0.3) IR

*GFR:   29 (+3) Extremely Low

*Gluc:   108

*K+:   4.5 (-0.3) IR

*NA+:   139 (+1) IR

*MG:   2.1 (+0.1) IR

*Phos:   3.3 (-0.2) IR
          NC= No Change     IR= In Range


*Urinalysis (U/A)

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)

(*These results are exactly the same as each of the past 4 months!)

The labs are looking strong for the most part. My Creatinine took a nice .20 drop, which was unexpected.

The Hematocrit is up, and the Red Blood Count is at [I think] it's highest level yet. Though still 0.35 below the range minimum, it is great to know that the kidney continues communication with the bone marrow to continue producing RBC's. 

The Calcium is holding steady with my current intake of this vital mineral, and I'm seeing some better movement towards the proper ranges of the BUN and GFR.

On the downside, the Lymphocytes took another--and by now almost expected--downturn, dropping from 13.8 to 10.8. One of these days, I'll be able to watch this lab value rise to the proper level (between 20.0-29.0) and stay put. That will be a fabulous day!

So, a great set of labs! 

Also on the 29th, I had my latest IV infusion of Belatacept. Aside from the veins in my L arm being rather difficult, the infusion went well, and there have been zero appreciable side effects.

Next, the visit yesterday with my Cardiologist.

As I had spoken about in my last entry, we discussed getting rid of the Isosorbide, which will allow me to also omit the Protonix.

He suggested that we revisit my taking Amlodipine to help control my BP. When I took this med before, I was either on dialysis, or was in advancing renal failure, so the overall side effects of the med may be different for me this time.

However, he would like me to try this change under the supervision of either the Kidney Clinic, or my Nephrologist since they are better acquainted with my overall history; which I am completely fine with.

Once I am able to contact my Clinic Coordinator I will get that process going.

Also, I received a piece of great news from my Cardiologist...my heart is completely healthy, and he has no further reason to see me! So, I finally have my Cardiology clearance!

Next, my headaches remain in an 'up' cycle. Once in a while--like Friday--I still have most of a day without a headache at all. However, that has been the vast exception over the past two months; but no matter how often they occur, these rare days of no headache pain are most welcomed!

Do you remember when I was telling you about having to drive a car with no shoes/sandals because I couldn't feel the pedals though the soles [due to the ongoing neuropathy]?  Well, this week I forgot to take off my sandals and went about my errands and having no problems feeling the cars' gas and brake pedals! Granted, the pressure sensation is muted, but I was actually driving with shoes on!
This development, though seemingly small, is actually huge! It is a terrific indicator that my feet are healing a bit more than I expected, and that there is hope that I can once again get my feet into socks and shoes.
Though the neuropathy may never fully dissipate, I am more hopeful than ever that my feet are on their way to being back to [mostly] normal.
I am still have those sharp pinprick sensations on my toes and the soles of both feet, which are nerves starting to calm down, and have more small areas on both feet where I can feel slightly more sensations and pressure. So there is definite improvement, with hopefully more to come!

My weight has been steady, hovering at around 125 Kg's. My urinary output appears to be stable, with fluctuations of .2-.6 Kg's on any given day.
The evenings and nighttime are still the best for processing fluids, as these remain the heaviest output times. During the day, I can go two, three or even four hours between voiding. At around 5 p.m. this changes to every 1.0-1.5 hours until bedtime. Then at night, my output ranges anywhere from 800 cc's (0.8 Kg) to 1700 cc's (1.7 Kg).  So long as the fluid comes off each day, I am a happy camper!

And I think that I will end this entry there.

As I go though the possible switch away from Isosorbide, I will keep you updated.

My next scheduled appointment isn't until my November infusion on the 26th; but I will be making at least one more entry before then.

May you all have a great week!

Good Health to All!

ScottW

Post-Transplant Update: 21 October 2019

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

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."

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

*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