Thursday, June 25, 2020

Transplant Rejection Update: 25 June 2020

My latest labs are in and they are once again a mixed bag of results.

23 Jun 20 Labs:

*Creatinine:   3.38 (+0.27)

*Hematocrit:   33.9 (-0.5) Low

*Hemoglobin:   10.6 (-0.3) IR

*Lymphocytes:   7.5 (+1.3) Very Low

*Lymphocytes Absolute:   0.6 (+0.2) Very Low

*Neutrophils:   75.5 (+1.1) High

*Neutrophils Absolute:   5.5 (+0.3) IR

*Red Blood Count:   3.75 (-0.05) Extremely Low

*White Blood Count:   7.3 (+0.4) IR

*Blood Urea Nitrogen:   57 (+9) Extremely High

*Calcium:   9.5 (+0.4) IR

*Glomerular Filtration Rate:   19 (-2) Extremely Low

*Blood Glucose Level:   113

*Potassium:   3.9 (NC) IR

*Sodium:   (137 (+1) IR

*Protein:   6.9 (NC) IR

*Magnesium:   2.2 (+0.1) IR

*Phosphorous:   5.5 (+1.4) High
          NC= No Change     IR= In Range


Though there is nothing glaringly obvious, let's talk about a few items.

First, the Creatinine continues to vacillate; this time upward. As my body struggles to work with the kidney, this pattern will likely be evident every week.
Accordingly, the BUN rose significantly, and the GFR lost ground.

Next, both the Hematocrit and the RBC dropped. This basically means that Red Cell production has slowed due to decreased communication between the kidney (the supervisor, so to speak) and the bone marrow (the production shop). As we go along, there will be little stability of these numbers.

As a reminder, even though my Blood Glucose Level is out of range (70-100), I am not worried whatsoever because the Tums that I use to get my required calcium have sugar in them. I chew the tums when taking my meds, and I do my Tuesday labs after taking my meds; so, my Blood Glucose Level will always be artificially high.

Lastly, the Phosphorous. While the number is not terrible, I received a call from one of the Transplant Clinic doctors who instructed me to chew two additional tums every time I eat, which will act as a Phosphorous Binder when used with foods. I am to do this until at least next Tuesday, when I do labs again. My next lab results will dictate whether or not I continue with the added usage of Tums.

I asked if the added Tums would put my Calcium out of balance, and was told that it shouldn't because it is acting as a binder instead of adding to my Calcium level.

(From the National Kidney Foundation) "Normal working kidneys can remove extra phosphorus in your blood. When you have chronic kidney disease (CKD), your kidneys cannot remove phosphorus very well. High phosphorus levels can cause damage to your body. Extra phosphorus causes body changes that pull calcium out of your bones, making them weak. High phosphorus and calcium levels also lead to dangerous calcium deposits in blood vessels, lungs, eyes, and heart. Over time this can lead to increased risk of heart attack, stroke or death. Phosphorus and calcium control are very important for your overall health."

So, having a higher than desired Phosphorous level during a rejection becomes a balancing act that will probably change parameters on a frequent basis.


 My headaches have increased once again, with TMD involvement being about 60% of the total. The remaining 40% are simply constant, unremitting headaches. Fun stuff.

I continue to keep my food intake appropriate with my activity level. This has helped as my weight is [somewhat] stabilized between 120.5-121.8 Kgs. In conjunction, my fluid intake (3 Liters Water min. plus other fluids)seems to be keeping pace overall with the ability of the kidney to filter it out. While my weight is fairly steady, there are days when I retain an extra 500+ ccs of fluid; but then get rid of it within a day or two.

My daily Blood Pressures are staying high both morning and evening. For the A.M, my systolic pressures are ranging between 133-146. The diastolics have all been higher, as well. In the evenings, my systolic is between 140-162. Also, my pulses remain in the 70s.
I do occasionally have the aberrant readings that are pretty normal in the 120s, but these are few and far between.

My sleep over the past week has been pretty bad. I sleep well for the first three hours, then after urinating at around 230a-300a, my body does one of three things: 1) I quickly get back to sleep.  2) I get back to sleep, but only after an hour or more.  3) I don't get back to sleep at all, usually arising out of bed after a couple of hours, then eventually needing to sleep between 7-8 AM.  So the overall result of this poor sleep is frequent daily sleepiness and long naps.

Lastly, I continue to exercise every two or three days, depending on whether or not I am sore. The first couple of brief sessions had no pain or soreness. However, since those first workouts, I am seeming to aggravate some scar tissue in my abdomen which takes two or three days to settle down. My last workout was this past Tuesday, and I will be exercising again today, Friday.
On my last workout, I was easily able to increase the total reps of all three exercises that I am starting with to 40 reps each. Because of this, today I will increase the weight by ten pounds (5 lbs each side of the Bowflex, so ten total), but then decrease my reps to between 20-30 in total. I will determine this number simply by how I feel.
(I told you already that my muscles respond well to exercise, and after just five brief sessions, I am already increasing weight. Over the next week or two I will likely be adding one or two more exercises.

And on that subject, I was finally able to do the pictures of me before I started my exercises. Assuming that I am able to keep going on my workouts, I am planning on updating these every six months, or so. 
Starting at 121.6 Kgs, here are four pictures; two in profile, and two straight on; all taken on 10 June 20...


That's my starting point.

Now, some of you might notice that my R forearm looks bigger than my L. You would not be wrong. I once referred to this as my Popeye arm because of how much bigger it is than my L forearm. This is due to all of the surgeries I've had on my R arm. As I exercise, this difference will probably increase as I develop muscles in that arm.

I am glad that I have reached the point that I can exercise. After all of the surgeries, all of the set-backs and tests and [seemingly] innumerable procedures and doctor visits, I am finally at the point of being strong enough and free from enough pain to get going. It has been over ten years since I last worked out, and it shows. However, I am looking forward to exercising more and more simply because I love being in shape! 
Previous to the kidney disease I worked out for an hour and a half five to six days each week, walked eight miles in just over and hour six to seven days each week, I weighed in at 305 pounds of muscle, and felt  and looked greatI realize that with my age that I cannot get to that muscle mass again. However, my aim is to significantly lower my body fat percentage while simultaneously increasing my muscle mass and overall physical endurance [to previous levels]. In the end, I hope to weigh in at about 107 Kgs (235 pounds) and look far better than I do right now.
So, that journey begins. Let's hope that I can at least get close before my body has had enough of this kidney.

That's all for today. Thank you, my readers, for continuing to follow me on this extraordinary journey. 
As I have stated before, no matter what I go through, no matter how many set-backs there may be, I hope that my experiences might be helpful to others so that they can hold onto hope, stay positive and see that there are betters way to endure the terrible rigors of chronic disease than to give up and give in to the hardships that ensue. 
I know that I have not always been as strong as I needed, but everyone has their limits that they must face, then try to push past. That push can be one of the hardest, most daunting things you will ever do. That doesn't mean that you give in to the hardships; you fight your way past them, even if it takes a long time to achieve. So if you're not there yet, you keep fighting!

Until next week,

Good Health to All!

ScottW

Wednesday, June 17, 2020

Transplant Rejection Update: 17 June 2020

I had fully planned on updating my blog last week, but my wife and I decided to clean the whole house from top to bottom, and that effort took five days to complete due to my limited energy, as well as errands that had to be run. So,  let's get started...

Labs:

09 Jun 20                                             16 Jun 20

*Creat:   3.38                                      *Creat:   3.11

*HCT:   34.7 (-1.1) Low                     *HCT:   34.4 (-0.3) Low

*Hemo:   11.0 (-0.4) IR                       *Hemo:   10.9 (-0.1) IR

*Lymph:   17.5 (+6.1) Low                 *Lymph:   6.2 (-11.3) Very Low

*Lymph ABS:   1.1 (+0.3) High          *Lymph ABS:   0.4 (-0.7) Very Low

*Neut:   74.5 (-1.0) High                     *Neut:   74.4 (-0.1) High

*Neut ABS:   4.6 (-0.7) IR                   *Neut ABS:   5.2 (+0.6) IR

*RBC:   3.84 (-0.12) Ext. Low             *RBC:   3.80 (-0.04) Ext. Low

*WBC:   6.2 (-0.8) IR                           *WBC:   6.9 (+0.7) IR

*BUN:   54 (+3) Ext. High                   *BUN:   48 (-6) Ext. High

*CA:   9.4 (-0.5) IR                               *CA:   9.1 (-0.3) IR

*GFR:   19 (-1) Ext. Low                      *GFR:   21 (+2) Ext. Low

*Gluc:   116                                            *Gluc:   112

*K+:   4.2 (NC) IR                                  *K+:   3.9 (-0.3) IR

*NA+:   137 (NC) IR                              *NA+:   136 (-1) Low

*MG:   2.1 (-0.2) IR                                *MG:   2.1 (NC) IR

*Prot:   7.3                                               *Prot:   6.9 (-0.4) IR

*Phos:   4.2 (-0.4) IR                               *Phos:   4.1 (-0.1) IR
              NC= No Change     IR= In Range

Two weeks of a mixed bag of results.

As is currently the norm, my Creatinine is jumping all over the place. With the current weeks' result, the BUN dropped and the GFR improved slightly. 
Of course, we see that the Lymphocytes and ABS once again fell precipitously. 
Lastly, because of the rejection, I am once more including the Protein reading as this will once again become relevant as things progress.
All in all, and considering what is happening with my body, the labs aren't too bad. 

Next, my June infusion of Belatacept (Nulojix) went quite well. The IV stick was done only once--which is a rarity--and there have been zero side effects.

My TMD headaches have been consistent; though my non-TMD headaches have increased a bit. 
I continue to tolerate more headache pain in order to preserve my average daily T3 intake at two.
I did have two times in the past two weeks that the TMD headaches grew incredibly intense, requiring my strongest med.

I started using my Bowflex on Saturday. It was a light and abbreviated workout. I completed the following exercises:
-Rowing:   (30 Lbs each arm)   20 Reps
-Leg Press:   (60 Lbs ttl)   20 Reps
-Lat Pull-downs:   (60 Lbs ttl)   20 Reps

Following this workout, I decided to take a couple of days off in order to let my weakened body rest; which is the right call. With as poor as my muscle tone is, and as bad as my stamina is, resting for a day between sets is, for now, what is going to happen. Once I start feeling a bit stronger, I will re-evaluate this approach.

Yesterday, I did my second set, and I already increased the workload:
-Rowing:   (30 Lbs each arm)   40 Reps
-Leg Press:   (60 Lbs ttl)   30 Reps
-Lat Pull-downs:   (60 Lbs ttl)   30 Reps.

After that first workout, the area I felt it most was over both sides of my anterior ribcage. The muscle pain wasn't intense; but just enough to remind me that I had worked muscles that hadn't been used much in almost ten years. The next day however, the discomfort was gone.  And as I had hoped, my chosen exercises did little to impact my abdomen, and I had no discernable pain from the effort.

With the two workouts, I slept better afterwards, as I fully expected. For me, whenever I am in great shape, my sleep is solid and restful; so I am looking forward to better and more restful sleep on a consistent basis as my exercise increases.

And with that, I will wrap up this entry.

I hope that you are all staying safe from the Chinese/Wuhan/Corona/Covid Virus (history will determine a final name, I'm sure), and taking the advised and appropriate temporary measures to keep yourself, your love ones, friends and co-workers safe, as well.

Good Health to All!

ScottW

Saturday, June 6, 2020

Transplant Rejection Update (the new title): 06 June 2020

As you see in the title, I have renamed my blog updates to reflect what is happening with the kidney.

Alright...let's get you caught up...

02 Jun 20 Labs

*Creat:   3.53 (+0.59)

*HCT:   35.8 (-0.4) Low

*Hemo:   11.2 (-0.2) IR

*Lymph:   11.4 (+3.8) Low

*Lymph ABS:   0.8 (+0.3) Low

*Neut:   75.5 (+1.3) High

*Neut ABS:   5.3 (+0.7) IR

*RBC:   3.96 (-0.22) Extremely Low

*WBC:   7.0 (+0.8) IR

*BUN:   51 (+10) Extremely High

*CA:   9.9 (+0.3) IR

*GFR:   18 (-7) Extremely Low

*Gluc:   115

*K+:   4.2 (-0.2) IR

*NA+:   137 (-1) IR

*MG:   2.3 (NC) IR

*Phos:   4.6 (+0.5) IR
          NC= No Change     IR- In Range


The obvious and glaring numbers are the Creatinine, BUN and GFR. As these are all connected, it is no surprise with the big jump in the Creatinine that the BUN rose sharply, and the GFR plunged. Anytime the Creatinine jumps the BUN rises, while the GFR drops; and then conversely when the Creatinine drops. At this time these terrible numbers are not yet concerning to the Transplant doctors. I'll explain later.

Next, I finally had that cardiac test (Electrocardiogram) scheduled, and it happened this past Wednesday. Basically, an Electrocardiogram is an ultrasound reading of your heart. There are various measurements taken, blood flow examined, etc. I could see my heart rhythm on the monitor, and the QRS looks perfect, and steady.  It also turns out that my heart is perfectly fine; which rules out any potential cardiac contributions to what is happening with the kidney. 

Then on Thursday I had the next visit with the Kidney Clinic. That is where I learned the results of the Electrocardiogram. Also, the doctors are not yet too concerned about my latest labs due to all of the diuretics I am on, because they cause abnormally high Creatinine, which--as stated above--affects the BUN and GFR. For now I am to continue with my current regimen of meds, and stay with weekly labs so the Clinic can keep an eye on my progress. Unless there is an alarming lab result, I will have another follow-up appointment in one month.

As things have slowly progressed, my non-TMD headaches are increasing. In order to keep within my more limited monthly Rx of T3s, I am using more Excedrin and tolerating a lot of stronger headaches.

My nausea has also gone up. I am now taking (on average) one Zofran about every other day for sudden onset of the nausea. This is no surprise after all of the days and nights I was sick to my stomach both prior to and during dialysis. I am hoping that it won't get too out of hand this time around.

Lastly, after a few more small maintenance checks, I will be ready today to put up my new Bowflex so that I can start using it on Monday. I have decided to start with just a few easy exercises to start out. All will be fairly simple and should have low impact on my abdomen. Those exercises are: Rowing, Leg Press and Lat Pull-downs. The weights are yet to be determined, but will not be heavy by any stretch. 
Knowing my body and exercise, I will be increasing exercises and weights fairly soon. A lot will just depend on how my abdomen feels.

And that is all for today. 

Next week are labs, as well as my June infusion of Belatacept.

I will apprise you of those, and my progress on the Bowflex.

Good Health to All!

ScottW