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

Post-Transplant Rejection Update: 09 October 2021

 It has been a down week for my kidney, and I am struggling with my energy all of a sudden.

Here are my latest labs:

06 Oct 21 Labs:

*Creat:   3.26

*HCT:   34.2 (-0.7) Low

*Hemo:   10.8 (-0.4) IR

*RBC:   3.77 (-0.15) Extremely Low

*WBC:   7.2 (+0.4) IR

*BUN:   45 (+1) Extremely High

*CA:   9.6 (NC) IR

*GFR:   20 (+2) Extremely Low

*Gluc:   108

*K+:   3.9 (NC) IR

*NA+:   139 (NC) IR

*Phos:   3.7 (-0.5) IR

*PTH (Parathyroid Hormone):   105 (High)

               NC= No Change    IR= In Range

Aside from dips in my Red Count and Hematocrit, these labs are fairly stable. 

However, despite the stability, I had a definite downturn in my energy this week. My body has struggled recovering from my workouts, I am feeling physically and mentally drained so much that I am having to push myself to get anything done from day to day. I am hoping this is nothing more than a brief lull, and that I will be able to rebound once more.

I have my Colonoscopy this coming Wednesday. Because I am a transplant patient, I must have a Covid Test, which I will do tomorrow.  I start the oh so lovely test prep on Monday evening, and cannot eat anything of substance all day Tuesday. Clear liquid diets are just the best!  :o(    I will post the results of the test later next week.

I think I'll stop there for today. 

I just finished my exercise, and I am tired!

Good Health to All!

ScottW

Update: 12 Oct 21:  My Covid test came back negative, so there won't be any issues with tomorrow's Colonoscopy.  sw

Post-Transplant Rejection Update: 02 October 2021

 I have meant to get an entry started every day for the past two weeks, but for one reason or another, have been completely unable to do so.

As a result, this entry will be brief as I have labs this next Tuesday. So let's get going...

Headaches have been good and terrible. I had a doozy of a TMD headache that lasted nearly three days. That was fun.

In general, I have noticed a definite downward trend in how I am feeling from day to day. It is nothing terrible, but I am feeling "off" most days of the week, and though I have my usual energy, I am getting sleepy rapidly once again.

My morning med intake is making me nauseated every single day now. This is definitely new as prior to this, I went from my meds not bothering me at all, to every once in a while, to several times each week, to now every day. My usage of oral Zofran has definitely increased as a result.

I am still getting my workouts in three days each week, and the results are finally starting to show.

My weight has been fluctuating upward. Part of this is due to my exercise. The biggest increases are due to water retention. As of this morning, I weighed in at 117.8 Kgs. Even extra Torsemide is not helping much.

With continued workouts my sleep remains solid. I don't even want to think of how exhausted I would be if my sleep was poor...

Going on four months post Vaccine #2, I am STILL  having daily side effects! Usually it is the fuzzy vision that lasts an hour or so; but I am also getting dizzy, and getting suddenly hot. I can get one or all three of these side effects on any given day.

My twice-daily blood pressures have been all over the place, ranging from the low 130's (Systolic) and 60's (Diastolic) to the high 160's and mid-80's. Even though I try to avoid it, frustration at my weight yo-yoing and the BP fluctuating wildly has definitely started to happen daily.

As you know, I am hoping to avoid dialysis as long as possible. With how my weight, BP and general feeling are going, dialysis will happen sooner rather than later. But, I'll still keep hoping...

I finally was able to get my Colonoscopy scheduled. The Gastroenterology unit at IMC was kind enough to place me ahead of other patients due to needing it for transplant. I am scheduled for 19 October.

That is all for today. Like I said...brief.

With my labs next week I WILL get another entry done!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 09 September 2021

 I know it has been a few weeks since my last post, so let's get started right away...

Day to day, things have been OK, I guess. 

The headaches remain consistent, with one bad TMD-induced headache that was a solid 10 for two days. Getting it to calm down took my best meds, minimal eating (to minimize stress on the jaw from chewing) and LOTS of doing pretty much nothing at all. 

The workouts have been regular, going every Monday, Thursday and Saturday. The lone exception to that was during the just-mentioned TMD headache.

My weight has started settling back down. It took over a month, but I am now finally bouncing back around in the high 115 Kgs. Again, that weight gain was nothing that I had or had not done. It simply happened.

Sleep-wise, with my exercise being regular again, I am sleeping better most nights. In the past three weeks I have had just one night that was interrupted by not getting back to sleep after having emptied my bladder.

My appetite has been getting better as my workouts have remained consistent. I am actually getting hungry several mornings each week, and almost always sate that with a big bowl of ZOOM (hot cereal), two slices of toast and some milk. My lunches are still inconsistent as far as total volume, but my dinners are almost always filling. 

I am still having Covid Vaccine side effects. It is now going on three months post vaccination. I am getting hot--which lasts up to two hours--getting minor dizziness, minor fuzziness to my vision, and occasional lethargy. These side effects are always one or two a day, and are never at the same times.   These can stop at any time!

Overall, I've been feeling up and down. No two days are alike right now. I never know how the day will go as I can wake up feeling good, only to start feeling lousy a few hours late; or I completely run out of energy well before I normally would.    You get the point.  So, I just take the days as they come. This means that I sometimes have to push myself mentally and physically  to start my workouts, as well as get them finished at the proper weights and total repetitions.

My latest infusion of Belatacept was on 03 September. 

I had the next lab draw just yesterday. Here are the results...

07 Sept 21 Labs:

*Creat:   3.53

*HCT:   34.9 (+0.4) Low

*Hemo:   11.2 (+0.2) Just High

*RBC:   3.92 (+0.04) Extremely Low

*WBC:   6.8 (-0.1) IR

*BUN:   45 (+1) Extremely High

*CA:   9.8 (+0.5) IR

*GFR:   18 (-2) Extremely Low

*Gluc:   110

*K+:   3.9 (+0.4) IR

*NA+:   139+ (-1) IR

*Phos:   4.2 (+0.6) IR

*PSA:   4.7 

*PTH:   62

             NC= No Change        IR= In Range          

The labs are "stable," which just means that despite the variations, nothing looks alarming.

I highlighted the last two additional values because they were ordered by the Transplant Team following my tele-med visit in August.

The Prostate Specific Antigen (PSA) is normally between 0.1-3.0. However, as a transplant patient, the variations I have seen in past tests have been huge; and this result is actually lower than the last few results. I was previously told that my higher PSA is of no cause for concern, so until I hear otherwise, I will continue with that line of thinking.

The second additional value is the Parathyroid Hormone. This too swings wildly between 55-110, with the preferred top of the range being 99.

I had my latest visit with my Nephrologist this past Tuesday. He saw nothing of concern in my labs, and has not changed my meds. Unless I have something happen, my next appointment will be in three months.

So, there you have all of the latest.

Upcoming, I have my yearly follow-up with my Dermatologist on Tuesday, 14 Sept. Also, I have a referral for my needed Colonoscopy that I will be calling on tomorrow. After that, I have only to get my Dental Clearance in order to be "Active" on the Transplant List.

As I get those done, I will keep you updated.

Enjoy the impending turn to Fall, and the cooler, wetter weather and leaves turning color that it brings.

Good Health to All!

ScottW