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

Post-Transplant Rejection Update: 15 December 2020

 As promised, here is my latest --and on-time--update!

Things this past week have been going well, I suppose.

My toe is healing nicely. I had a follow-up with the Podiatrist yesterday, and he stated that the toe looks good, and any pain will gradually disappear over the coming week. My daily treatment (Tx) of the toe has now changed to one Epsom Salt bath in the morning, then put on the antibiotic lotion and a band-aid; but then take off the band-aid at night and let the site breath while I sleep. Keep my foot elevated as much as possible, and by next Tuesday or so, the healing should be complete, and no further doctor visits should be needed. 

Thank goodness! I really need to get back to my workouts!

Next, my weight has dropped further. In my last blog I forgot to mention that about two weeks ago now, I saw my weight hit a new low of...117 Kgs! I have been bouncing around back up to the mid-118's, but my average weight has been around 117.6 Kgs. That means, since my heaviest water weight, I have now dropped a full  11 Kgs! Much of that weight was from water retention--about 8 Kgs to be exact. The rest has come off as a result of my workouts beginning to kick my metabolism into gear. Aside from seeing muscle growth, getting my metabolism going is a great accomplishment!

For my upcoming 2nd transplant (whenever that is), I have just 6Kgs more to lose, at a minimum. 

I saw my Chiropractor today, and told what I had written in my last entry about the acupuncture at least keeping my headaches from being worse; and he wholeheartedly agreed! He then reminded me of a few times that he was unable to be in his practice, so I would go a week or more without both the spinal adjustment, and the acupuncture, and my headaches went from barely controlled to completely uncontrolled and terribly painful.  So...yeah. It's definitely working!

My energy continues to be a crap shoot from day to day. Since last week, I've actually had several days that I felt somewhat energetic, but couldn't do much because of my healing L big toe. I just appreciate having those days! It reminds me of when I was on dialysis and felt so awful all of the time. I'd wake up one day and feel like I could go do a bunch of things, and would get about doing as much as my poor strength allowed. Those days are always nice when you get them.

I had planned on reshooting pictures of me in order to show my progress; but with being unable to do any exercising for the past couple of weeks, and with Christmas fast approaching, I decided to just wait until January.

I think that that was everything I had wanted to mention, so I'll wrap this up.

Next week, I have labs and my December infusion. IF I have time, I will get those results posted. No promises though.

Last, although a tad early, I wish all of you a very MERRY CHRISTMAS!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 10 December 2020

 I know. I know...

Far too much time has passed since my previous entry--21 days, to be exact.

Aside from the Thanksgiving holiday...there goes nearly and entire week!...working on the business, extensive headaches and now with my L foot healing up, I really don't have any excuse.

Let's start with my November infusion. Though I won't go over my labs from that day [because they are similar to the latest numbers], the infusion went really well. A trauma nurse put in the cannulation, and made my very difficult L arm veins look easy. As always, the infusion went without a hitch, followed by zero tangible side effects.

The headaches have, despite twice each week acupuncture, been consistently worse. I actually think that the acupuncture is keeping my TMD headaches from being completely uncontrolled! Plus, there are now at least 25% of the headaches that seem to be non-TMD-related; meaning, my deteriorating body chemistry is causing more and more headaches.

On average, my daily headache index sits at about 7 of 10. Since my last post, I have had numerous headaches in the 8-9 range, and three that went up past 10. This is, again, despite the acupuncture, use of the NTI devices and trying to relax as much as possible. 

My energy continues to rise and fall with no apparent pattern from day to day. This makes getting my workouts done difficult, to say the least.

Next, my latest labs...

08 Dec 20 Labs

*Creat:   4.18 (+0.39) That was a temporary dip the last time.

*HCT:   33.9 (+0.1) Low

*Hemo:   10.3 (-0.1) IR

*Lymph:   6.7 (+1.7) Extremely Low

*Lymph ABS:   0.5 (+0.1) Extremely Low

*RBC:   3.67 (-0.01) Extremely Low

*WBC:   7.2 (-0.8) IR

*Ketones:   Negative

*BUN:   59 (+1) Extremely High

*CA:   9.7 (NC) IR

*GFR:   15 (-2) Extremely Low

*Gluc:   107

*K+:   4.3 (NC) IR

*NA+:   139 (+2) IR

*MG:   2.2 (-0.1) IR

*Phos:   4.4 (-0.3) IR

*Prot:   7.2 (NC) IR

           NC= No Change           IR= In Range

I am not going to discuss any of the lab results this time, but instead talk about why I have been hobbling around the house for the past five days.

I went back for the follow-up with the Podiatrist regarding my L big toe. After talking with me about my progress over the last two months, he examined the toe and stated that I am still having some pain on the R side because the toe nail curved downward despite that ointment I was applying every day. He then asked if I wanted it out, to which I assented. Besides removing the nail, he would also remove about 1/4 inch of the nail bed in order to prevent any further issues. 

I had this same thing done with the big toe on my R foot about a year after I was first Dx'd (diagnosed) with PCKD back in 2009. Luckily, the L toe was not nearly as infected as that R toe had been, so getting the lidocaine injection in the toe was not painful at all. The procedure was quick and easy, and ever since, I have been keeping my L foot elevated as much as possible, soak it in a luke-warm bath with Epsom Salts twice each day, then place an antibiotic ointment on the affected area with a band aid on top. As each day passes, the pain in the toe lessens, and I get more and more comfortable.

Because of the toe healing, I am unable to get any workouts in because of the pressure it would place on the toe. So, that means that by the time I actually get another exercise session in, I will have done all of one workout over the past three weeks.   :o(

There really isn't anything further of significance to relay, at this time. As always, I will try to get one more entry done before Christmas, so be looking for that.

Until then, Stay safe, stay healthy and I wish you all the Best of Holiday Cheer!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 20 November 2020

 Too much time has passed since my previous update, so let's get into things...

10 Nov 20 Labs

*Creat:   3.89 (-0.36)

*HCT:   33.8 (+0.03) Low

*Hemo:   10.3 (NC) IR

*Lymph:   6.8 (+1.7) Extremely Low

*Lymph ABS:   0.4 (-0.1) Extremely Low

*RBC:   3.69 (+0.12) Extremely Low

*WBC:   6.5 (-2.3) IR

*Ketones:   Negative

*BUN:   58 (+4) Extremely High

*CA:   9.4 (+0.1) IR

*GFR:   16 (+2) Extremely Low

*Gluc:   102

*K+:   4.0 (-0.2) IR

*NA+:   138 (NC) IR

*MG:   2.3 (+0.1) IR

*Phos:   4.5 (-0.3) IR

*Prot:   7.1 (+0.1) IR

         NC= No Change          IR= In Range

 About the only item of note on my latest labs is the Creatinine. It came down a fair bit; which was unexpected, but always welcome.  All of the other results are similar to what has been happening over the past several tests.

Next, let's discuss just why this was so late in getting typed. First and foremost is overall energy level; which has been fluctuating from day to day. On my good days I must choose between getting my workouts done, doing housework, writing on this blog and/or working on the business [as I can]. On the bad days, I can barely get myself fed, let alone anything else. Right now there seems to be a sort of balance between the good and bad energy days; usually switching back and forth from one day to the next. Today is actually a rare one, because this is the second day in a row of having a decent amount of energy. Luckily, I worked out yesterday, which gave me a little time to work on this today.

Plus, I also got some actual computer work done for the business; so its a banner day!  :o) 

Secondly, my TMD and non-TMD headaches have been on a severe uptick over the past eight or nine days, which, of course, additionally impacts by ability to get any of the aforementioned things done at home.

The headaches have worsened despite the acupuncture, NTI devices and my trying to relax my facial muscles as much as possible. As a result, my T3 usage increased over the last month, making me five full days short on a single prescription. This hasn't happened in a long while. In the last two weeks, I've had two headaches that jumped to a solid 10+ for no apparent reason, requiring me to use my strongest med to combat it. One of those headaches was all TMD; the other was not. So, a definite increase in headaches and intensity!

Third, with having to weave and dodge around the energy thing and the headaches, I often have to choose which things get done; and unfortunately, getting this blog written with any consistency is the usual victim. Why? Well, because I must get my workouts done as often as I am able; which has been about three days each week. After that, I have housework that, if neglected, becomes a health hazard to me; so I get those things done. And lastly, because doing computer work for the business as often as I can is essential to my wife's efforts, and helps her to be successful.

As a result, I often take far longer to get to this blog than I would prefer.

I've had a new--and very unwanted--development happen since my last entry; which is increased and intense nausea after taking my morning meds. I cam on slowly, with the nausea not being too bad, or lasting very long. Within a few day though, I was having to rush to get a sublingual Zofran, in order to tamp down the worsening nausea. Then about a week ago, I actually threw up about ten minutes after taking my meds. It wasn't much, and mostly just water; so I wasn't concerned about not having meds being processed.

I hadn't been doing anything different when taking my meds than I have since the transplant, so I knew the nausea was new to the worsening kidney function. So, I decided to at least eat a piece of toast (or something similar) right before taking my [literal] handful of meds and one Liter of water. Since doing that I have not had another bout of nausea after my meds.  Other nausea however, still can occur throughout the days or evenings, and occasionally at night.

In other areas, my dreams remain completely under my control; thanks to acupuncture, the neuropathy in my feet has kept improving very slowly; the workouts are doing their job as I am getting stronger and am staying on a downward trend on my weight, being between 118.1-119 Kgs. Some of my daily weight depends on how much water the kidney processes. Yesterday, for instance, it failed to eliminate a full kilogram of water; which equals one liter. Whenever that happens, I take the extra Torsemide in order to void that extra fluid.

So, that's a good catch-up. The time is in the early evening, and I need to make dinner.

Up next week is my next lab draw, as well as the next infusion of Belatacept. After that, next Thursday is, for the USA, our annual Thanksgiving day. With the pandemic going on, and because I am a very high risk patient, the only family I'll see on Thanksgiving is my daughter, who just tested negative for the Wuhan virus.

I hope that your upcoming week is safe, healthy and full of smiles!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 07 November 2020

 I had meant to get this entry done last week, but a number of factors prevented that from happening. These included headaches, exhaustion, feeling lousy, medical appointments and the home-based business we are trying to get moving forward. So, let's get right into things starting with the latest lab results...

27 Oct 20 Labs:

*Creat:   4.25 (-0.08)

*HCT:   33.5 (+1.4) Low

*Hemo:   10.3 (-0.2) IR

*Lymph:   5.1 (+0.7) Extremely Low

*Lymph ABS:   0.5 (+0.1) Very Low

*RBC:   3.55 (-0.12) Extremely Low

*WBC:   8.8 (+0.7) IR

*Ketones:   Negative

*BUN:   54 (+1) Extremely High

*CA:   9.3 (-0.9) IR

*GFR:   14 (NC) Extremely Low

*Gluc:   95

*K+:   4.2 (+0.1) IR

*NA+:   138 (+1) IR

*MG:   2.2 (NC) IR

*Phos:   4.8 (-0.3) IR

*Prot:   7.0 (-0.1) IR

*B12:   1125 (NR 345-1485)

*Folate:   14.6 (Normal 18.5)

*Retic Ct:   33.5 (NR: 29.7-37.9) 

              NC= No Change          IR= In Range

All of my usual labs reflect the recent trends throughout. I am pleased, though, that my Glucose was normal.

I have only highlighted three additional labs that the Kidney Clinic ordered to check on whether or not I might have anemia, which would explain my excessive tiredness lately. Unfortunately, all three factors came back normal; so no readily apparent explanation as of now.

Also last Tuesday was my latest Belatacept infusion. Aside from the veins in my L arm being a bit ornery in allowing for canulation (two sticks and a bit of fishing were invloved; but the IV was patent), the infusion went well, and again, no untowards S/E (side effects).

Also during that span of no blog entries, I went a full week between workouts either because of severe headaches, some lingering dizziness or just feeling lousy. I finally got a workout done after an eight day gap; and surprisingly, I completed my full regimen of exercises. I am scheduled for my next effort this afternoon and, seeing that my headache is under control and I have some energy, the workout will definitely happen.

Next, despite the acupuncture, my NTI devices and my focusing on keeping my face relaxed, the headaches have been constant and nearly unremittent. I have days where they are down a notch or two, but for the most part, my headaches have consistently been ranging between 7-9 every day. This is NOT fun!

My appetite remains good, and I continue to void all fluids that I take in every day. Right now, my weight is hovering between 118.3-119.1 Kgs. I am hoping to get under 118 Kgs in the next week, or two...then start on hitting 116.

With the exhaustion, this is hard to figure out. Some of it comes from my medications. Ever since the Clonidine was upped, I once again fall asleep easily within an hour [of taking it]. I thought that my body had gotten past this, but I was wrong. For now, I have found that if I allow myself to sleep for even 15-30 minutes, the excessive tiredness  diminishes. So, I try to do that at least once each day in order to try to have a productive day.

My sleep has been good, and I have been getting about 6-7 hours per night...aside from my usual 2-4 times of nightly bladder relief.  And my dreams remain completely under my control, as well.

Here is where I'll conclude for today. I need my lunch, then let it settle for at least an hour before I start my workout. Plus, I have business things to get to, as well. 

I will try to get another entry done during the coming week...hopefully.

Stay strong, healthy and safe in this most unusual of years!

Good Health to All!

ScottW