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

Post-Transplant Rejection Update: 26 February 2021

 Ever since my last--and very brief--update, things have been on somewhat of a rollercoaster.

Since I do not know what my labs are looking like, I can only surmise that my body chemistry is getting seriously out of whack.

Let's start with my overall energy.

In general, it is doing OK. Even though I have been getting better sleep, I still suddenly tire out, get sleepy, and nap for 1-3 hours almost every day. Sometimes twice in a day. The exception to my energy has been my workouts. 

Ever since I  updated the rods on my Bowflex, my workouts seem to be vastly more effective. I am now switching out weights for the various exercises, and I am getting at least three sessions in every week. For now, that is a good amount. The down-time gives my body time to rest; which is when the muscle growth happens. 

When my body is done for the day, I almost can't do anything else, and I need to sleep in order to recharge to the limited energy I have.

My headaches have taken a serious upward turn. For about two weeks now, my daily average headache is at a solid 7 of 10. There is no reason, and nothing I am doing has precipitated the increase or intensity. Yes, I am still doing the acupuncture twice each week. There are many times that TMD involvement is obvious, an other times when it is not a [major] factor. This increase is at least partly due to a change in my body chemistry.

When the TMD is the ruling factor, there is little I can do to prevent it. For example, just yesterday I had had a moderate headache all day at about a 6. Then last night while I was sitting getting ready to take my PM vitals, within just a few minutes my head suddenly exploded to a 10+. I could hardly think at all (not exaggerating!).     I tested my jaw, and sure enough, that R joint clunked HARD!  I had to use my strongest prescription med just to get to sleep.  It has been a long time since I had a headache explode like that, and it was not fun! When I awoke today the headache was better, and at least manageable. 

My appetite has been off the past week, or so. I just don't want to eat as much as had become normal. So if this continues, then I know that it is likely due to the kidney struggling.

Despite all of my usual  daily BP meds, my blood pressure has been slightly worse the last few weeks. This may be due to the increase in my headaches, which I would not be surprised at as anything that stresses the body causes an elevation of the BP. I see my Nephrologist next week, and will discuss this with him.

I think that is all of the big stuff I wanted to tell you today. As I have labs and that doctor visit next week, I will wrap this up for today, so that I have more to update you with next week.

So until then, enjoy your weekend, and stay healthy and safe!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 10 February 2021

 My wife's new work schedule is kicking my butt!

It's not that it's difficult getting her out the door, but with my not getting good sleep over the last two to three weeks, getting up at 630A, along with her lunch prep, breakfast, doing things for the home-based business, getting computer and housework done--as I am able--getting as many workouts in as possible, and cooking dinner every night...I am dragging. As a result, things like this blog get left off my normal routine. 

Also, as on the January lab draw, I have no lab results to publish! There is no indication as to why these results are not available to me, but I do not like being in the dark about my Lymphocytes, RBC, WBC, BUN, GFR and Creatinine. I will see my Nephrologist next month and ask him why my lab results are not available.

Overall, my day to day is up and down. Today, as I write this, is a bad day. My TMD is awful, I have no energy and I feel like garbage. It is just one of those days that you just have to get through so that you can feel better the next day.

In regards to my headaches, I had been doing a little better as the acupuncture is making headway against them. For a couple of weeks through yesterday, my pain med usage was down, as was my use of Excedrin. It was good to have some hours every day with no headaches at all. Yesterday, all of that changed however, as a sudden and massive TMD headache (going from a 2 to a solid 8 within seconds) hit me on my way to my Chiropractic and Acupuncture appointment. These treatments helped for a few hours, but it roared back by late afternoon, staying at an 8+ for the remainder of the evening, through the night, and throughout today with pain meds just keeping it from exploding to a solid 10. 

So, lots of fun there...

That is all I can type today. Between my headache and energy level, my brain is mush. I will get another entry done early next week.

Until then,

Good Health to All!

ScottW

Post-Transplant Rejection Update: 20 January 2021

 There has been a change in my normal day to day, which is why I have not had the time to type an entry. I am finally beginning to get used to my new schedule, so am here to at least give a brief update.

I had labs on 05 January, but because of some technical glitch, I cannot access those results. However, I am confident if there was a serious issue, my Nephrologist would let me know.

Overall, I am fairly stable. My energy still waxes and wanes from day to day, and my weight continues to creep downward. 

This morning I weighed in a 115.9 Kgs! That is the second time I hit that weight; the last being one week ago. Now that I've gotten under 116 Kgs, it is only a matter of time before all of my daily weights are in the 115s, and heading to the 114s...a weight I haven't seen since before my Abdominal Hernia repair over three years ago.

There are two things I am doing that are definitely helping my weight loss:

1) Exercising as often as I can. I recently started using my Bowflex once again following the longer-than-expected healing of my R big toe. The exercising has obviously kickstarted my metabolism, which means I am burning calories (fat stores) both day and night, even on the days that I don't exercise. 

2) Despite the stress it causes my jaw and the TMD, I have started eating salads nearly every day. I use a combination of Green Leaf lettuce and fresh spinach, along with several vegetables like fresh mushrooms, cucumbers, onions, etc. I am using either a vinaigrette-type dressing, or homemade Ranch dressing using skim milk and mayo. 

For now, I will keep following this plan, which can always change or adapt as needed.

On the TMD headaches front, they are now consistently worse ever day. Instead of four or five days a month that are headache free, I now have one...and the intensity of those headaches is increasing. Right now, I have an increasingly worse headache that sits at about a seven, and I have no meds of any sort working right now. As soon as I am finished with this entry, I'll be doing something about the headache.

I once again have further proof that the acupuncture is helping keep the headaches from getting worse. Because of my change in my daily routine, I was unable to get to my Chiropractor for a week and a half. (I just went again yesterday.) In that time frame, my headaches increased dramatically, and I spent many of those days unable to get much done because my head was just hurting too much. I even had to use two of my strongest meds over that timeframe, and they took away the pain enough so that they were tolerable; but which left me fuzzy and unable to think very well. It is extremely rare that I have to use two of those meds in a short time period. So...no fun on the headaches!

I have my January infusion just yesterday. There were no side effects of any sort.

As my weight has decreased, so too have my blood pressures. While the overall trend remains a little high, I've had readings in the one-teens (systolic) and the 50s (diastolic), IF the readings drop much further, I will be in danger of hypotension (BP being TOO low). So I am keeping close tabs on it, and will call my doctor for a med adjustment, if needed.

That's really all I have right now for this "quick" update. Now that my new routine is settling down to a new normal, I should get the next entry done much sooner.

Good Health to All!

ScottW

A Thought on Blog Comments

 Hello Everyone,

Since I started this blog, Google has changed the format numerous times, and rarely (if ever) tells users exactly what has changed, or where to find things that were previously easy to locate on the main entry review page.

As a result, just two days ago, I came across one of those mystifying changes to the "Comments" section. As I had not received any comments in a long while, I was wondering if I had somehow missed them in all of those aforementioned changes to the site. Upon looking at something that I had already looked into before, I suddenly found comments and questions listed that had come in as far back as five years ago!

Since so much time has passed to what should have been timely questions, I simply chose to delete them rather than looking like a fool after so much time. A few of the comments that were left I authorized for publication on the appropriate entries.

IF any of you left a comment or question that I failed to respond to from back then, I sincerely apologize!

Now that I know where Google placed the Comment section, I will continue to check there regularly...

...that is, until Google tinkers with the website again and tosses everything into chaos (in the name of "bettering" the site, of course) once more.

Thank You for continuing to follow this long, and unpredictable journey!

ScottW

*Also, I would like to find a better, more stable website for my blog. Any suggestions would be greatly appreciated!

Post-Transplant Rejection Update: 31 December 2020

 Today, the final day of 2020, will be my final entry for this year.

This will be a fairly brief entry because of Christmas and New Years, so I'll get right to it with my 22 Dec Labs...

22 Dec 20 Labs

*Creat:   4.27 (+0.09)

*HCT:   32.6 (-1.3) Low

*Hemo:   9.9 (-0.4) Low

*Lymph:   4.2 (-2.5) Extremely Low

*Lymph ABS:   0.4 (-0.1) Extremely Low

*RBC:   3.54 (-0.13) Extremely Low

*WBC:   8.9 (+1.7) IR

Ketones:   Negative

*BUN:   55 (-4) Extremely High

*CA:   9.2 (-0.5) IR

*GFR:   14 (-1) Extremely Low

*Gluc:   115

*K+:   4.3 (NC) IR

*NA+:   138 (-1) IR

*MG:   2.4 (+0.2) IR

*Phos:   4.1 (-0.3) IR

*Prot:   6.8 (-0.04) IR

              NC= No Change         IR= In Range

Lymphocytes dropped significantly, which makes my normal precautions [when out of the house] suddenly go to the heightened level. This is in addition to the overall vigilance I have to do with the Chinese virus pandemic.                    So...yeah. Lots of fun.

It was nice to see the Phosphorous take a drop. The lower this number is, the easier my kidney is working.

Lastly, one lab value that I have never kept track of--but have followed nevertheless, is 'Red Cells in Urine.' For the first time since the rejection episode (I believe), I have had a small amount of Red Blood Cells in my urine. It wasn't much, but any amount is not good. I will continue to keep track of this as the rejection progresses, and report on it as is necessary.

The headaches have been elevated because my Chiropractor had the gall to go on a Christmas vacation with his family; which means that I am getting neither the spinal adjustment, nor the acupuncture. His absence just shows further proof that both treatments are essential to helping me keep the headaches somewhat under control. My usual treatments will resume next Tuesday.

That's all I have for this last entry of 2020.

My next blog will be in a brand new year.

Happy New Year, everyone! 

May 2021 be far better than this past year!

Good Health to All!

ScottW