Post-Transplant Rejection Update: 24 June 2021

 My second Wuhan Virus vaccination shot was on Tuesday, 15 June.

As of today, I still have lingering side effects.

By the evening of the 15th, I was starting to feel off, and the same non-TMD headache began.

Over the ensuing days, I had a poor appetite, felt hot, dizziness, lethargy, body aches, and I slept a lot more than normal. By day 5 I had thought than many symptoms had disappeared; but instead of being there when I awoke on Sunday, they hit me after I was up for about two hours.

This same pattern has repeated every day since.

As of this morning--10 days later--I am still hot, getting dizzy, have the headache, and continue to feel off. So...yeah...lots of fun...

I knew this would hit me hard; it just did so in an unexpected way. Instead of nailing me like the first shot, the side effects on this one have been less in intensity, but they are just going, and going, and going. 

Honestly, I have no idea how much longer I'll be feeling like this. 

As a result, and until I actually feel better, this will be my last entry. So, it could be a few more days, or another week before I get back to typing up an update.

I hope you are all well, happy and healthy!

ScottW

Post-Transplant Rejection Update: 09 June 2021

 Those Wuhan Vaccination side effects lasted a solid seven days!

The headache persisted until  the following Sunday, the fever until Monday, and the lethargy lasted until Tuesday.  So much fun!   The second shot will be on 15 June. 

I have so much to look forward to!  :o(

Next up, my June lab results.

01 June 21 Labs:

*Creat:   2.99 (-0.34)

*HCT:   35.2 (+0.5) Low

*Hemo:   11.2 (+0.3) IR

*Lymph:   Not Taken

*Lymph ABS:   Not Taken

*RBC:   3.95 (+0.07) Extremely Low

*WBC:   5.8 (-1.6) IR

*BUN:   47 (+3) Extremely High

*CA:   9.2 (NC) IR

*GFR: 22 (+3) Extremely Low

*Gluc:   109

*K+:   3.8 (NC) IR

*NA+:   137 (-2) IR

*MG:   Not taken

*Phos:   3.7 (+0.2) IR

               NC= No Change     IR= In Range

There was a nice drop in the Creatinine, along with corresponding movement in the GFR and the BUN. Unfortunately, both of those latter numbers are significantly out of their proper ranges. 

*Remember, when a kidney (or kidneys) is/are going down, you will see vacillations of all of those key lab values. Next month, all three could very well be worse; while in two months, we could see all three rebound again. It is just the nature of a failing kidney.

The RBC's took another nice bump, which I am surprised to see. It will be interesting to see if the Creatinine, GFR and BUN results from month to month show any corresponding movements in the Red Blood Cell production. I will try to remember to note that, but no promises as my brain has started becoming a little foggier again. 

I saw my Nephrologist on 01 June. He is pleased, overall, with my "progress." We are both frustrated with my energy level, so he ordered that I start taking OTC oral Iron tablets to see if a boost in my RBC's might add some better oxygenation to my body, and therefore, more energy. He did caution me that this might not work simply because of the kidney going down. It's worth a shot, though.

I had my June Infusion of Belatacept just yesterday. The nurse got the stick on the first try! (Thank goodness!) My next infusion will be on 06 July.

As far as other things...

The acupuncture is going well. My TMD remains in relative check; which isn't saying a lot, but again, at least the headaches aren't out of control like they were when my original kidneys were dying. So, I'll absolutely take "relative control!"  My feet have been experiencing many nerves waking up with dozens of pinprick sensations on all of the toes, on top of both feet, and some on the bottoms of the feet. There is still a ways to go, but with my feet starting to swell again, any progress against the neuropathy is excellent!

The TMD headaches have had a change in the pattern, going from all of the time to [usually] starting up in the evenings. This is likely due to a simple buildup of jaw tension throughout the day. By the next morning, it is usually calmed down. I have experienced this now for over a month, which is how I know the pattern has changed. I really don't mind the change because it gives me a number of hours every day that are mostly headache free.

Because of my energy, I have not worked out in a month now. Again, what energy I have is quickly used up getting my wife ready for work, going to appointments, and getting some errands a/o shopping done. This all happens by about noon. After that I am totally spent. IF the Iron supplements help at all, I should see an increase in my energy within about a week. We'll see...

My appetite has started shifting again. Foods that I have been fine with are becoming unappetizing once again. Some days I have almost no lunch, but a decent dinner, and visa-versa. Every so often I'll have a decent lunch AND dinner; though these are markedly happening less.  IF I can start working out again, this will definitely help my overall food intake.

Sleeping has been OK, at best. My dreams remain under my control, but the past few weeks, my ability to get back to sleep after emptying my bladder throughout the night has taken a step backward. Some nights I get up to six hours of quality sleep, but most nights that is more around 4.5-5.0 hours. Yes, this doesn't help my overall energy level; but even after taking 1-2 hour naps during the day, I still have no energy.

As far as my weight, without regular exercise, I am still hovering between 114.0 Kgs and 115.5 Kgs. Right now, my day to day weight-loss is a constant yo-yo. This isn't ideal by any stretch; but at least I am not gaining a lot more weight.

Next week (Tuesday) is my second Wuhan Virus vaccination. 

After talking with a number of people regarding the difference between their first and second vaccinations [with the Pfizer formulation], there is no clear consensus as to how the second vaccine might affect me. Some people had no S/S's (Signs and Symptoms) on the First, but got hit on the Second.  Some had severe S/S's on the First, but relatively none on the Second dose. And a couple of people had S/S's on both doses. Some had no immune responses to either. No one I spoke to though had a compromised immune system like I do; so, anything can happen is basically the approach I am taking.

And that is all I have today.

I hope that all of you are safe, healthy and getting back to life.

Good Health to All!

ScottW

Post-Transplant Rejection Update: 28 May 2021

 I was finally able to get the first of my Wuhan Virus vaccinations on Tuesday (25 May).

I had the Pfizer vaccine injected into my L deltoid, and awaited the onset of symptoms.

These started during the night when I awoke to empty my bladder and noticed that I was noticeably warmer.

As the night progressed, a definitely non-TMD headache started coming on that was very intense. This has persisted through as of this writing today (28 May), and will likely continue. The headache is centered just behind my temples, and feels far different from any TMD headache. Even meds barely keep it in check.

On Wednesday morning, I was feeling OK; but as the day progressed, I started feeling like I had the flu. Even two days after the onset, I still feel like that!

Additionally, I've had body aches, lack of hunger, lethargy, and even had my eyesight compromised like I've had an eye exam and my pupils were dilated. This fuzziness is better today, but still present; and, it seems to get worse as the evenings come on.

So, all of this is still happening three days after my first shot! I've talked to numerous people who have had symptoms [following the first Pfizer vaccine] last maybe two days, but rarely three. If I feel like this following the "introductory" vaccine,   I am absolutely justified in my worry with the side effects will have on my poor immune system with the second dose; which will be on 15 June.

So much to look forward to!  :o(

Alright...Next week I have June labs, as well as my next Nephrology visit. I will write another entry afterwards.

Until then, I hope that my US readers will have a fun and safe Memorial Day weekend! I encourage you to take even just a few moments to remember that this "holiday" is not just a long weekend for travel, camping, cookouts or the start of summer; but for remembering all of those men and women in our history who fought and died so that we might be free from tyranny, and then to preserve our freedoms from those who would take it away. Their lives and sacrifices must never be forgotten!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 17 May 2021

I cannot believe that 25 days have passed since my previous post. 

My sincerest apologies for the delay!

Let me get you caught up...

Just two days after the last entry, my wife had three cysts removed from her scalp that had been there since her days in the US Army back in the late 70s and early 80s. I spent a few days taking care of her, during which I exhausted myself intensely. Between getting my pitiful energy level back, and trying to tamp down the intense and prolonged headache that ensued, I spent about a week recovering from that.

Then, in the time that followed until now, I have used my energy cooking, running a few errands, going to doctor appointments, doing some housework, and working out the few times my energy was elevated a little. In between, I was taking lots of impromptu naps, and just trying to keep my mind in a good place. 

That's all.

Also, I had my May labs done a couple of weeks ago. The results follow...

04 May 21 Labs:

*Creat:   3.33 (+0.17) 

*HCT:   34.7 (+1.9) Low

*Hemo:   10.9 (+0.4) IR

*Lymph:   Not taken

*Lymph ABS: Not taken

*RBC:   3.86 (+0.27) Extremely Low

*WBC:   7.4 (-0.6) IR

*BUN:   44 (NC) Extremely High

*CA:   9.1 (-0.7) IR

*GFR:   19 (-2) Extremely Low

*Gluc:   108

*K+:   3.8 (-0.3) IR

*NA+:   139 (+2) IR

*Phos:   3.9 (-0.3) IR

               NC= No change     IR= In Range

I am glad to see the Creatinine behaving, and remaining fairly stable for the first time in many months!

And for the most part, most of my other labs are also somewhat stable. The big difference are the Hematocrit and the Red Cells. Because of the rise in my RBC's, my Hematocrit also rose. This also allowed my body to absorb more oxygen, which of course, gave me the extra energy I needed to get a few regular workouts done. 

My May infusion of Belatacept was last Tuesday. The nurse stuck the canulation of my L arm on the first try--which I always appreciate!--and the infusion went smoothly, and zero side effects afterwards.

Tomorrow, 18 May, I will finally receive my first vaccine of the Wuhan Virus. Because of my very poor immune system, I am still very nervous about how my body will react. The Kidney Clinic has recommended that I get the Pfizer vaccine, which only has a three week window before my second dose. And as nervous as I am about the first dose, it is the second that will be much harder on me. I think that I'd rather have another surgery than have to go through what others have said is hard on healthy adults.   There is always the off chance that the second dose side effects will be minimal, so I'll try to think the good thought...

Unfortunately for me, even after I am fully vaccinated, I will still have to wear my mask whenever I am shopping, or am around others indoors because of the possible virus variants; but mainly because of my immune system. I realize that many people will look at me quizzically for a while, and if asked, I will politely explain about my failing transplant and poor immune response to viruses, colds etc. That'll take care of any questions.

Everything else seems to be in sort of a holding pattern. My sleep is fitful, et best, my dreams remain under my control, the headaches keep chugging along but never get too bad, I continue doing chiropractic and acupuncture twice every week and have seen the headaches staying in check and my feet slowly gaining more feeling on the tops of both feet, as well as on the toes and parts of the bottom of both feet.

That's it for today. I will check in later this week to tell you have my body responds to the inoculation tomorrow.

Until then, stay safe, and continue to strive to do and be your very best at all times, and in everything you do!

Good Health to All!

ScottW

21 May 21

Well, it was the shot that wasn't!

I went to receive my Wuhan Virus vaccine as scheduled, but when I arrived, I was greeted with the news that they did NOT, in fact, have the Pfizer vaccine; but the Moderna. Wanting to stick with the recommendation of the Kidney Clinic, I decided to wait.

So, this afternoon, I rescheduled the first vaccine dose, this time at the Intermountain Medical Center main campus, where the Kidney Clinic is located.   It is a bit of a drive, but I have other errands to run near there that same day.

So...next week... 

 

 

Post-Transplant Rejection Update: 22 April 2021

Nothing unexpected has happened in the near month since my previous update...

However, the best way to sum up why it has taken so long for this entry can be summed up in three words:

Complete

Utter

Exhaustion

In the past three weeks, I have worked out a total of twice, and have done little aside from cooking and some cleaning. Besides that, I have been sleeping and taking long naps...a lot.

My latest labs...

30 Mar 21 Labs:

*Creat:   3.16 (-0.29!)

*HCT:   32.8 (-0.1) Low

*Hemo:   10.5 (-0.1) IR

*Lymph:   Unavailable

*Lymph ABS:   Unavailable

*RBC:   3.59 (-0.08) Extremely Low

*WBC:   8.0 (+0.5) IR

*BUN:   44 (-5) Extremely High

*CA:   9.8 (+0.4) IR

*GFR:   21 (+3!)  Extremely Low

*Gluc:   111

*K+:   4.1 (+0.2) IR

*NA+:   137 (-3) IR

*MG:   Unavailable

*Phos:   4.21 (+0.5) IR

            NC= No Change     IR= In Range

The Creatinine took a surprise dive, altering both the BUN and GFR more towards normal. I have no idea why this value dropped; but I'll take it!

The Red Blood Cells continue to decline, and, another lab value not noted here called Transferrin, was just above the bottom of its Normal Range. The best and briefest explanation I can find for this is as follows:

"Transferrin

[ˌtran(t)sˈferən]

NOUN

biochemistry

A protein of the beta globulin group which binds and transports iron in blood serum."

While I only have a very rudimentary grasp of this protein, it essentially carries the iron needed for RBC production in the bone marrow. A very low Transferrin level means that, despite my Iron being in mid-range, not enough is reaching the bone marrow, thereby decreasing my overall RBC production, leading to less oxygen saturation in the blood; which is why I have been so exhausted.

I am not yet aware of anything that can be done (if anything at all), and have not yet found any good research online as most articles are about high Transferrin, and not low levels. I will keep looking. 

So, at least I understand why the exhaustion was taking over everything.

My headaches have been is check...somewhat. I usually do fine during the day, with headaches kicking in during the evening hours. This is most likely happening because of a day-long build-up of muscular tension in my R jaw. Aside from my normal pain control meds, I haven't needed anything stronger in at least a month.

Because of my profound lack of energy, I have not hardly been exercising (as noted above). And because of that, my metabolism has slowed a bit, and my weight has been stagnant and hanging around 114.8 Kg, plus or minus half a Kg.

At least I haven't gained any of that lost weight again!

I had my April infusion of Belatacept on the 13th. As per usual, no untoward side effects happened.

The acupuncture continues to provide results for my feet. I've had several nerves at the base of four different toes wake up--which are always painful when they do. Plus, I just noticed yesterday that the tops of both feet are feeling a bit leathery, for lack of a better descriptor. I think that I've previously explained it like this: Whenever you get a big blister on your foot, and it then pops or weeps out, and you wear shoes over that blister, you have that rubbing sensation because the loose upper layers above the blister site are now rubbing on the lower part on the foot itself. THAT is the sensation I have been feeling on the tops of both feet, from the base of the toes to about halfway towards the heels.

So, that's all I have for now because it is late, and my brain is turning to mush. 

I will try to get another entry done soon. 

I am planning on getting my first dose of the Wuhan Virus inoculation on my Kidney-versary, 04 May. As per the Kidney Clinic recommendation, I will be getting the Pfizer version. The second dose for this particular version will be three weeks later.

Good Heath to All!

ScottW

Post-Transplant Rejection Update: 28 March 2021

 In the three weeks since my last entry, things have been mostly consistent.

My weight is bouncing around between 113.5-114.8 Kgs. There are days when I gain a lot of water weight, but that is easily remedied by extra Torsemide the next day.

My appetite has taken another slight downturn. I am finding that I am often not hungry every day (aside from my morning snack) until going on 300p. Even then, my "lunch" can range from small to decent. Also, my ability to taste is less than even a month ago, which also doesn't help my food intake at all. Plus, my sense of smell in also off once again.

Sleep has been pretty good, and my dreams remain under my control. IF I have a dream that somehow startles my subconscious, I trigger awake, think of something different and then drift back to sleep.

After my last entry, I ended up having a cold. Despite my best effort to stay healthy, with my immune system so low, it doesn't take much to overwhelm what little defenses I have. The cold lasted about a week, and I utilized the now normal med routine of Mucinex, Delsym syrup and Tylenol.

After that I had a still-present wave of exhaustion hit me. It was severe enough that I was sleeping seven to eight hours every night, then take a 3-5 hour nap in the middle of the day. My longest "nap" was six full hours, and I still went to sleep at my regular time.    Since then, it has gotten better, and my average nap is about two hours.

Because of that exhaustion, and the cold, I did not work out for two weeks. I just started up once again this past Wednesday. All I did was use the same weights, but did less reps per exercise. I worked out again yesterday, and did better, getting in full reps on most of my routine.

The headaches have remained manageable, and I have not had one that was uncontrolled in several weeks. The acupuncture continues to help immensely! 

My March infusion of Belatacept went well. The canulation was done with one stick, and it was over quickly.

My next set of labs are coming up this Tuesday, 30 March. Assuming my labs are actually posted, I will get them typed up later this week.

And that is about everything that has been going on. As stated above, I will post another update later this week.

I hope that you are dong well, staying healthy and always doing and being your best!

Good Health to All!

ScottW

 

Post-Transplant Rejection Update: 06 March 2021

 Well I finally have some labs for you that even include the both January and February, too!

Labs:

*Creatinine:   J-3.94,     F-3.37,     M-3.45

*Hematocrit:   J-32.6,     F-32.0,     M-32.9  (All are Low)

*Hemoglobin:   J-10.1,     F-10.3,     M-10.6  (All In Range)

*Lymphocytes:   Unavailable

*Lymphocytes ABS:   Unavailable

*Red Blood Count:   J-3.58,     F-3.59,     M-3.67  (All Extremely Low)

*White Blood Count:   J-7.0,     F-7.0,     M-7.5  (All In Range)

*Ketones:   Not Taken

*Blood Urea Nitrogen:   J-??,     F-53,     M-49  (All Extremely High)

*Calcium:   J-9.1,     F-9.1,     M-9.4  (In Range)

*Glomerular Filtration Rate:   J-16,     F-19,     M-18  (All Extremely Low)

*Blood Glucose Level:   J-117,     F-129,     M-114

*Potassium:   J-4.2,     F-3.5,     M-3.9  (All In Range)

*Sodium:   J-137,     F-141,     M-140  (All In Range)

*Magnesium:   ?? (all three months)

*Phosphorous:   J-4.8,     F-3.6,     M-3.7  (All In Range)

So, with the bulk of my labs now available, I can finally see exactly where I am at, body chemistry-wise.

My downturn in overall energy is [at least] partly due to a low RBC and low-end-of -normal Hemoglobin readings, as well as a build-up of waste products in my bloodstream that is not getting properly filtered as evidenced in the near-dialysis level GFR results. Both of these together can really throw your body a curve ball, and an end result is excessive tiredness, body fatigue and some lethargy.

I had my scheduled visit with my Nephrologist on Tuesday, and everything went well. I asked to be taken off of the Spironolactone due to increasingly severe side effects that have come on as my weight has dropped. These have included, dizziness, dry mouth, suddenly falling asleep, muscle fatigue in my whole neck and shoulders, and occasional vertigo. The side effects would kick in about 50 minutes after taking my morning meds, then last about two hours, followed by a gradual easing of the symptoms.  As I stated, these came on slowly as my weight decreased, with the symptoms getting worse once I hit the 116's (Kg's). At 115 Kgs, they got worse. 

So, no more of that med!  Thank Goodness!

My next visit with my doctor is in three months...unless I have a sudden downturn, of course.

On the subject of my weight, I am currently bouncing between 114.5-115.5 Kg's, and going several days at a time in either number. At 114.5 Kg's, I have now lost a total of 7.0 Kgs since August, and without really trying too hard. I think that it really just comes down to my few workouts every week, and kicking my metabolism in gear due to the exercise. Other than that, I am not doing anything to lose the pounds.

I believe that I mentioned in a prior entry that my appetite was decreased. This continues, and my lunches are smaller, and my dinners, too. And I am rarely snacking on anything. Plus, I am seeing appetite fatigue again, and will look at a full cupboard and not see anything I want. That's always fun...                          

 I am not aware of anything I can do to help either of these things, other than just picking something, making it and eating.

The TMD headaches remain strong, as well as a continued increase of the non-TMD headaches. I continue my efforts with the Chiropractic, acupuncture, relaxation techniques and NTI devices. At this point, if I can keep the headaches from getting worse, I'll consider it a win!

That's all I have for today.

My next infusion of Belatacept is on the 16th. 

Coming up in May is my yearly Kidney Clinic follow-up.

Until next time...

Good Health to All!

ScottW