Post-Transplant rejection Update: 19 January 2022

 A quick note:

Last week I was somehow exposed to the Omicron Variant of the Wuhan Virus.

I spent two and a half days in the hospital, and now have a lengthy recovery ahead.

I will write more when I am feeling up to it.

Good Health to All.

ScottW

Post-Transplant Rejection Update: 31 December 2021

 It is the final day of 2021, so considering it has been two weeks since my last entry, I need to get one more done for the year.

Christmas was extremely quiet!

This was the first time in 37 Christmases together that my wife and I have had neither children, nor family over. It was so strange!

However, I still made a nice dinner of our Christmas favorites, and we ate some delicious leftovers for several days.

I started the new med (Cozar/Losartan) this past Wednesday. I have had no apparent negative side effects, but my morning BP has dropped from the mid-150's (systolic) down to the low 140's. The evening reading is still high, but slightly better.

My December infusion of Belatacept went well. Nothing else to report on this.

My headaches have been up and down. For the most part they have been nominal from day to day; but last week I had a really nasty non-TMD headache pop up late in the day. With sleep, and my strongest med, the headache had retreated by the next morning.

After a month of not working out [due to exhaustion and general tiredness], I finally got a session in just yesterday, and I used lighter weights and fewer reps. My next workout will be tomorrow, and I'll return to the heavier weights, and just go with how I am feeling on the reps from exercise to exercise.

I found out a couple of days ago that I am not yet active on the Transplant List after all. My coordinator informed me that the Transplant Committee wants an in-person visit with the surgeons, as well as a visit to a Urologist because of my latest PSA (Prostate Specific Antigen) being slightly elevated at 4.41. This number really isn't anything worrying, but the Committee is just being cautious. Those appointments are yet to be set up.

Oh...do you remember that I stated in my last entry that the Wuhan Virus vaccine side effects were gone?

Wrong!

Since I wrote that, I have had several more instances of blurry vision in my L eye, AND a few episodes of suddenly getting hot again. This is so much fun...  :(

There have been several days that have again found me not feeling well. Luckily, it still goes away within several hours, or by the next day. 

My sleep has been good, and my dreams are still under my complete control. Water and fluid intake remains consistent from day to day, and my appetite has been relevant to my lack of exercise. I'm sure this will increase now that I am getting my workouts in once more.

So that is all for today, and for 2021.

May you all have a safe and Happy New Year of 2022!

ScottW

Post-Transplant Rejection Update: 15 December 2021

 Moving my daughter went well, and for happening in December, our roads both to and from there were dry and perfect. 

The biggest issue I've had since we got back has been an unrelenting exhaustion. I am sleeping several hours during the day, but still getting a full night of sleep. Only yesterday did I actually go a full day without a long nap. 

And because of the exhaustion, I have not yet gotten any exercise in the week since we returned; which is not good at all.

I did my December labs last week, and here are the results...

09 Dec 21 Labs:

*Creat:   3.30 (-0.16) 

*HCT:   35.3 (+0.6) Just Low

*Hemo:   11.1 (+0.2) IR

*RBC:   3.83 (+0.01) Extremely Low

*WBC:   7.7 (NC) IR

*BUN:   46 (-3) Extremely High

*CA:   9.3 (-0.3) IR

*GFR:   20 (+2) Extremely Low

*Gluc:   107

*K+:   4.1 (+0.2) IR

*NA+:   140 (NC) IR

*Phos:   4.0 (-0.5) IR

                 NC= No Change       IR= In Range

These latest labs show stability, which is great!

Unfortunately, as I have been telling you in previous posts, the labs are not reflective of how I am doing overall. 

In addition to the extended exhaustion and the increasing daytime naps, my weight has risen due to an increase of water retention. Yesterday morning I weighed in at 118.4 Kgs. This is after I had weighed 117.6 Kgs the day before. The 10mg of extra Torsemide is no longer holding my weight at a consistent level. 

I have also noticed a rise in the non-TMD headaches. This may be coincidental to the exhaustion of getting my daughter moved--and I'm hoping that is what has happened--but I am not resting on that hypothesis. I have had two nasty non-TMD headaches over the past week and a half, which required my strongest med to tamp down. My T3 usage has increased slightly because of these headaches, as well. I'll definitely continue watching these.

I had my latest visit with my Nephrologist yesterday, and it went well. 

He agreed that my labs are stable, but is concerned about my blood pressures, water retention and exhaustion. To help with the BP, I will be starting on Losartan (Cozar) late in December. If my January labs show any deviation in my potassium or phosphorous, then he will re-evaluate that med at that time.

He is also ordering [for Jan labs] a Thyroid check, cholesterol and my iron levels.  I will be sure to let you know those results.

As far as the water retention, he wants me to continue using 60 mg of Torsemide every morning, and add extra Torsemide depending on my weight gain or loss.

Overall, he is pleased with how I am doing. So, no imminent dialysis.

I have now gone almost a month without any apparent Wuhan Vaccine side effects...finally! I am still debating whether or not to get a booster when it is time because of the severity and length of time of said side effects. Plus, the Kidney Clinic has not announced anything regarding the booster shots. More on this at a later date.

That wraps up this entry. 

With Christmas next week, I likely will not get another entry until the following week.

Coming up: My December Infusion of Belatacept, which will be on 21 Dec.

So, until next time, May you ALL have a Very Merry Christmas!

And may you stay safe if you travel, and feel the love of family and friends throughout this Holiday season!

MERRY CHRISTMAS!

ScottW

Post-Transplant Rejection Update: 27 November 2021

I hope that my US readers had a safe, wonderful Thanksgiving!

Now that the Thanksgiving holiday has passed, I decided to look at how long it has been since my last post, and was surprised to see that it is now three full weeks.    So let's get started...

My latest infusion of Belatacept happened on 24 Nov. The nurse had a great stick, hitting a difficult vein on her first try. The infusion was uneventful, and I have had zero side effects once more.

And backing up a bit more, around two weeks ago I had another downturn in my energy level. It wasn't anything severe, but it has definitely impacted my day to day. Right now, I am once again averaging just two workouts each week. And these workouts are taking longer than just a month ago.   Last week I started getting a cold which initially, caused a nasty headache that was non-TMD involved. I managed one workout over that week, and am getting ready to finally get another session done after I finish with this entry.

As a result of the downturn, I am sleeping restlessly (for some reason), and taking more naps during the day. Not working out regularly certainly does not help my sleeping; but even when I do, I am still napping the next day.

I have started having several days each week [since this downturn] that find me just not feeling very well. It's nothing specific, but reminds me of how I felt most days when I was on dialysis. Luckily, feeling like this doesn't last...yet. 

My appetite has taken a hit because of those days that I don't feel well. I've had several days that I ate about half--or less--of what I normally eat. 

I don't remember if I had previously stated that I started eating breakfast most mornings--I know, it's a shocker!--and eat a double portion of the hot cereal Zoom! and two slices of toast, so that I get some good nutrition for my workout days, as well as the grains in the cereal helping to keep my intestines working properly. With all of the diuretics, I was getting stopped up far too often, and usually took three to five days between bowel movements. The Zoom! has helped make the BM's happen every day. 

My weight is fluctuating again, but in the right direction this time. With the help of a few bouts of nasty diarrhea, I have dropped my weight by two full kilograms, and currently hover around 116 Kgs. I am always sure to drink a glass of gatorade to resupply the lost electrolytes. It isn't the ideal way to lose water weight but I'll take it anyhow. 

My TMD headaches have been OK, I guess. I haven't had a really bad one in about a month now. As long as I can keep the headaches from exploding, I'll consider this a victory!

With this latest downturn, and considering how I am feeling overall from day to day, it is evident that dialysis is getting closer. How long from now it will start is anyone's guess. The farther away, the better!

Unfortunately, it will be at least two weeks before my next entry. My wife and are having to help our daughter move out of State, so next week will be preparing for the move, followed by a day of driving, a couple of days there, then back again. After that, I'll do my December lab draw, and have my next Nephrology appointment on the 14th of December. Whether or not I get an entry done before the 14th remains to be seen.

So, I'll get one done as soon as I am able, and have the brain power to write.

May you all enjoy the start of the Christmas season!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 08 November 2021

 Let's start with my November Labs...

02 Nov 21 Labs:

*Creat:   3.49 (+0.23)

*HCT:   34.7 (+0.5) Low

*Hemo:   10.9 (+0.1) IR

*RBC:   3.82 (+0.05) Extremely Low

*WBC:   7.7 (+0.5) IR

*BUN:   49 (+3) Extremely High

*CA:   9.6 (NC) IR

*GFR:   18 (-2) Extremely Low

*K+:   3.9 (+0.4) IR

*NA+:   140 (+3) IR

*Phos:   4.5 (+0.8) IR

               NC= No Change      IR= In Range

There is nothing or any real significance on these labs. 

While they are by no means "stable," and I am definitely headed towards dialysis, this set of labs simply looks like the kidney is worsening, but incrementally. 

And on that note, I have seen more signs that the kidney is struggling. I am gaining--and holding--onto new weight that is NOT from muscle buildup. Even taking extra Torsemide is having little effect on ridding the extra water from my body. As of this morning, my weight sits at 118.2 Kgs!

In order to try to combat this, I have added an extra 10 Mg of Torsemide every day. (I believe that I mentioned this on my last post.) With doing this my weight remained somewhat stable, hovering between 115.9-116.7 Kgs. Only over this past week has my weight suddenly, inexplicably gained another kilogram plus.

Additionally, I have had four days out of the last ten, or so, that I have felt sick again. It wasn't anything huge, or debilitating; but it was there, and it felt lousy! The latest incident was just yesterday. I awoke feeling more tired than usual, and then had a non-TMD headache come on slowly, followed by that feeling sick. By noon, I had no energy, my head was in terrible pain, and I felt awful! This lasted all afternoon, and I finally felt relief at around 700p.

My urine has also been smelling stronger, more odiferous. This is happening both day and night. The color remains fairly consistent; which is mostly clear with a slight yellow tinting.

Energy-wise, I am seeing greater and greater loss in my overall energy. I am only averaging two workouts each week, and if my energy saps even more, even that number will decrease.

I am getting overly sleepy once more, and take short 10-15 minute naps several times each day.

I do not know what triggered this suddenly downturn, but I am trying every day to do as much as I can without thoroughly exhausting myself, and then taking days to recover.

My sleep is good, and my dreams remain completely under my control. 

Despite the new developments, I still do not feel like it is time for dialysis. 

My appetite remains commensurate with my exercise and activity level. The headaches have definitely ramped up; both TMD and non-TMD related. I have reminding myself numerous times every day to relax my face, shoulders, back, etc. The acupuncture is still doing its job of healing the neuropathy.

That's all for now. 

My brain and body are tired, and I am feeling terribly sleepy....again.

So, I will wish you all the very best!

Good Health to All!

ScottW

Post-Transplant Update: 28 October 2021

 It has been a tough couple of weeks since my last update, though there is one bright spot.

As I stated in the entry about my recent colonoscopy, it took more time than anticipated to feel better. That was fun...

Once I felt better from that, my energy was still depleted, and I have struggled to get my workouts done. That depletion remains with me today. And I am scheduled to get a workout in today...but I may not be able to. My mind is saying 'yes!', but my body is going, "Ummm... I think not!" So, we'll see. I just finished lunch, so that may give me the energy I need to get it done.

On top of that, I've just had three unexpectedly long and draining days in a row. First on Monday I did my workout in the afternoon, followed by needing to go grocery shopping late, hauling the food upstairs, putting most of it away...and finally collapsing into bed at about 1130p completely exhausted.

Then on Tuesday, I had my normal Chiropractic/Acupuncture appointment in the late morning, a quick lunch, then my latest Belatacept infusion. After that, I noticed in a reflection that my car's DRL's (Daytime Running Lights) were both out; so I checked the headlights, and both of those were out, as well. So, I took an unexpected trip to our long-time mechanic to get them all replaced [because there is so much other stuff in the way that you cannot do it yourself]. This took an additional two hours, and I went home exhausted. 

And yesterday was my local garbage pickup day, which, as exhausted as I was mentally and physically, was not fun to gather and take out. After that was done I collapsed on the couch and slept on and off over the next few hours. Then while on an errand that had to be run, I remembered that I had my yearly Dermatology Exam that was happening about fifteen minutes from that moment! So I rushed to the hospital where my Dermatologists office is located, had to walk about two hundred yards across a very crowded parking lot, had my appointment, then hoofed it back all of that distance to my car. And by this time it was after 300p, and I still hadn't eaten any lunch.

Once home, I ate, then collapsed again on the couch; my energy completely depleted from three long, hard days [for me, at least]. And yesterday was SUPPOSED to have been a day for my body to recuperate! Which brings me to today, and not knowing if I'll have the energy to workout.

On one hand I am grateful that I could get so many things done. On the other hand, I am incredibly exhausted! And with my current daily energy level, I don't know if I can mentally push through the exhaustion in order to get my exercise.

On the good news side, my Dermatology Exam showed nothing irregular or abnormal! My skin remains clean, normal and healthy.  My next exam will be in October of 2022.

I have discovered that my Torsemide (diuretic) is not able to keep the kidney processing fluids as effectively as it should, leading my weight to go up ,stay up, drop, repeat; with no consistency of my weight from day to day. So I have been taking an extra 10mgs of the Torsemide every morning, and since then, I have had four consecutive days of stability (.2-.3 swings) in my weight. 

My headaches have been worse, and I've had two nasty TMD headaches over the past nine days, or so. Keeping these under marginal control has been difficult, to put it mildly.

So, that is my last couple of weeks. 

It is easy to see that my kidney is struggling, and it will only get worse from here on out.

Next month--November--I have no scheduled appointments other than my twice weekly Chiropractic/Acupuncture. Though the Dental clearance remains--which I will work on next week--it will be nice to have a month without any other appointments!

Next week are my November labs; which I will post as soon as I can.

Until then, Happy Halloween!

Good Health to All!

ScottW

Post-Transplant Rejection Update: Colonoscopy Result

 Last Tuesday I started the new prep routine in advance of my latest colonoscopy--my first since 2012. 

The new prep is sooooooooo much more pleasant than the old. I did not have to drink that horrid, sugary, awful tasting "7-Up-like" liquid that pretty much everyone gags over. Instead, the new prep simply involved a half gallon of Gatorade,  238 mgs of Miralax powder, four Dulcolax tablets, and two Gas-X tabs.

In all, I lost over two full kilograms of water!

Anyhow, the test went as scheduled, and took about thirty minutes in total, during which I was sedated. 

The result is that my large bowel (large colon, or large intestine) is completely clean, and free of polyps! The bowel is so healthy that I do not need another colonoscopy for ten years!

Here is the sheet I was given by the physician:

*Even though the color (as seen on the scan above) on this is not accurate, the bowel is pink and healthy, as is seen in my original copy.

The worst part of the test was my feeling lousy for several days afterwards.          I don't recall feeling that bad on my last one, but I may have been. 

Right after I post this, I am finally going to get a workout in after a whole week. I'm just grateful that I am feeling better!

Good Health to All!

SW