Post-Transplant Rejection Update: 30 September 2020

(I had originally planned to get this entry done over the weekend, but seeing that it was so close to the next lab draw, I decided to instead finish this once I had those results...)

The P.E.T. re-test is completed.

It went pretty much exactly the same as the first test, and the Radiology technician even stated that the images look nearly identical; but that only a Cardiac Physician can accurately assess the images. As I have not received yet another call for another re-test, I will assume that the images were satisfactory.   And just like last time, I got a massive headache from the test [because the isotope/med that is given is a huge vasodilator] and again spent the remainder of the day recovering.

Despite the tiredness that comes and goes, I have been getting my workouts in as much as possible. In fact, I'll do one later this afternoon for the third consecutive time [of every other day]. Hopefully, I can keep going, and start adding more exercises. 

There are no new changes in how my feet are feeling. I fully expect that the next noticeable change will also be a sudden realization that I can feel something new underfoot.

Also, the headaches remain up and down; though I awoke this morning with a good bit of pain.  This isn't surprising considering that my jaw is popping really hard today. So, NTI devices tonight!

I can tell that my Red Count and Hematocrit are down (even before the labs listed below) because I am starting to fall asleep if I just stop moving around; like when I'm on the computer, watching TV or trying to read a book or at least an article. AS I did before my transplant, I don't fight it and just take a nap.

I had another episode of dizziness a couple of days ago. Again, it happened at home, but only last a few minutes. Luckily, these episodes are still few and far between.

Now, the latest labs...most of which are ugly...

29 Sept 20 Labs:

*Creat:   4.44 (+0.36)

*HCT:   31.1 (-1.3) Low

*Hemo:   9.8 (-0.6) Low

*Lymph:   4.7 (-1.3) Extremely Low

*Lymph ABS:   0.3 (-0.2) Extremely Low

*RBC:   3.43 (-0.14) Extremely Low

*WBC:   7.2 (-0.6) IR

*Ketones:   Negative

*BUN:   62 (+4) Extremely High

*CA:   9.8 (NC) IR

*GFR:   14 (-1) Extremely Low

*Gluc:   112

*K+:   4.2 (+0.3) IR

*NA+:   139 (+1) IR

*MG:   2.2 (+0.1) IR

*Phos:   5.2 (+0.4) High

*Prot:   6.9 (+0.1) IR

          NC= No Change         IR= In Range

With just 7 of 17 results being where they should, these numbers are some of the worst I've seen since my rejection episode more than two years ago. I am not dwelling on these labs because I expect them to worsen; however fast or slow that happens. Instead, I am focusing on staying positive, getting my workouts done,  getting as much accomplished every day as I can, and working on keeping my mind challenged through some games, this blog and doing more puzzles. 

Again, the goal is to get as far as I can without going back on dialysis.

Also yesterday was the second of the two September infusions of Belatacept. (Remember, because I had the first infusion on 01 Sept, and the infusions happen every twenty-eight days, yesterday, 29 Sept was the second infusion). Because of the two cannulations for the PET tests, my arm was difficult to stick, and so is a bit bruised up today. The infusion itself went great, and there were no other complications.

Lastly, the big toe on my L foot has not gotten better, despite my daily efforts. So, I have an appointment next Monday, 05 October, with a Podiatrist. It is time.

Anyhow, between the existing tiredness, the meds I took for my headache, and my needing to get some lunch, this will be wrapped up in short order.

I hope that all of you, my readers, are healthy, and safe from the Chinese Virus!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 19 September 2020

 I had a hectic week, so let's get to this...

Monday, 14 Sept, I went in for my scheduled cardiac P.E.T. Test (Positron Emission Tomography) at 945a. I was cannulated in my L arm, taken to the scanning room, then placed on the table with my arms above my head. The scanner first took a series of pictures for a baseline. Then, I was given 'radioactive tracer' that increases your heart rate so that the scanner can examine your heart and blood flow under stress. Both the first and second series of scan lasted seven minutes. The hardest part of this test was keeping as still as possible in an uncomfortable position.

The last time I did this test was a day after leaving the hospital for my Renal Occlusion. I was still healing from the transplant, had zero cardiovascular ability due to years of declining health, and had undergone a score of some very painful tests {in hospital} the previous week.  As a result, that test was far more difficult because 1) I was already in a lot of pain, and had a bad headache on top of that.     2) Because of my non-existent CV shape, I had an extremely difficult time controlling my breathing so that I felt like I could hardly breathe. Those seven minutes were brutal!

This time around, after that med was injected, I could feel my heart rate increase, but I was easily able to control my breathing, and the time passed quickly with no distress on my part. I didn't realize this until after the test was over, and knew that my walking better and working out helped me to gain back some of my cardiovascular strength. 

Following the test you are given a can of Coke (or some other caffeinated beverage) because the caffeine helps to counteract the tracer; plus a snack, as well. The only real side effect of this test is that is gives me a massive headache that hit suddenly, and stay for hours. So, I spent the remainder of the day recovering.

Tuesday was labs, followed by Chiropractic (with acupuncture). The remainder of the day was shopping for supplies and misc. errands. As far as the acupuncture, there is now steady progress in healing the Neuropathy in my feet. I am now feeling textures through my feet, variations in floor temperature, and, when walking at a park yesterday I was walking barefoot (as normal) to feel the coolness and softness of the grass. I came upon a path to cross over that had some gravel, twigs, etc on it. I started across without thinking and suddenly realized that the things I was stepping on actually hurt my feet! This is HUGE! I haven't felt something like that in about eight years now! IF all goes well, and I can continue getting the acupuncture done twice each week, I may just end up back in shoes by next Spring or Summer. (Crossing my fingers!)

15 Sept 20 Labs: 

*Creat:   4.08 (+0.48)

*HCT:   32.4 (-0.4) Low

*Hemo:   10.4 (+0.2) Borderline Low

*Lymph:   6.0 (-0.8) Extremely Low

*Lymph ABS:   0.5 (NC) Very Low

*RBC:   3.57 (NC) Extremely Low

*WBC:   7.8 (+0.8) IR

*BUN:   58 (+1) Extremely High

*CA:   9.8 (NC) IR

*GFR:   15 (-3) Extremely Low

*Gluc: 109

*K+:   3.9 (-0.2) IR

*NA+: 138 (-1) IR

*MG:   2.1 (-0.1) IR

*Phos:   4.8 (+0.6) IR

*Prot:   6.0 (-0.1) IR

*Ketones:   Negative

*Parathyroid Hormone--PTH:   34 (Last was 108 in March 2020)

               NC= No Change          IR= In Range

These labs are becoming normal; which is terrible on some, good on others. There really isn't anything outstanding--or surprising--to discuss.

I am now including Ketones from the Urinalysis. Ketones in urine are key indicators of Diabetes, so this is measured every time as Renal failure can cause Diabetes. As to what that cause and effect is, I do not know. I will do some research to explain it on an upcoming entry.

Also, I will no longer report the Neutrophil results because, with the Transplant rejecting, these values are no longer relevant enough for me to include them here.

Lastly, my Parathyroid surgeon ordered a six-month PTH test. This number fell drastically from my previous test, and is in fantastic shape! Our efforts with daily Calcium intake is working excellently.

Next, on Wednesday I received a call from the Radiology lab where I did the PET test. Apparently, the imaging software that compensates for normal breathing motions was not working properly, so I had to reschedule the test for this upcoming Thursday, 24 September. (Yipee!)  :o)

Also that day, it was a long day of grocery shopping, followed by lugging it all upstairs, and getting it put away. On top of that, the day was hot (which my kidney does not like), and the A/C in our car is out, so I was in heat most of the day. I was drained when all was said and done.

On Thursday, I had an appointment at the Kidney Clinic. There, I finally heard a good explanation of just why my kidney is not working well with my body. The doctors have finally figured out that the "Ejection Factor" of my heart, and its ability to properly perfuse the kidney is too low. A normal Ejection Factor is somewhere between 65-80. Mine is around 50. This lack of blood flow is apparently causing all of the issues.

Luckily, it CAN be corrected by weight loss and exercise; two things I am already working on. In essence, the greater the body mass, the lower the Ejection Factor of the hearty. Hence, the lower the body mass, the better the perfusion of the body; and particularly for me, the kidney. If I can improve the Ejection Factor of my heart, my next Transplant should last longer.

Then yesterday, I helped with more errands that took most of the day--again, in a hot car--which left me drained. The whole week was far too busy, and my body is actually aching from the busy week. I am better today, but still tired. Another day should be enough to get me going again.

On the headache front, I am still getting slow improvements from the acupuncture. Most daytimes I am taking only Excedrin--or none at all--but as night comes on, the headaches start ramping up from a day of stressing the jaw through normal everyday activity. I usually have to take a T3 in the evening, but not always in the middle of the night. In fact, over the last four nights I have gone all night without any additional meds. These breaks from the TMD headaches are not consistent, nor predictable, but every time I catch even a half day headache free, is a wonderful thing!    Progress!

My energy has been like a sea tide...waning and waxing. With my RBC's down, this is no surprise. I conserve my energy for cooking, as well as household chores. Every passing day seems to bring a little more fatigue that I must fight through to stay active and productive.

As of now, I have no sustained Peripheral Edema. To prevent this in my legs I am keeping them elevated at every opportunity. My weight has remained hovering between 119.5 Kg and 120.5 Kg. Because of my hectic week, I have not worked out in about seven days. IF I feel up to it, I will do my exercises tomorrow.

So, I'll leave things there. This coming week I have two Chiropractic/Acupuncture visits, as well as the PET retest on Thursday.

Until next time,

Good Health to All!

ScottW

Post-Transplant Rejection Update: 08 September 2020

 I know that I missed getting this entry done last week, but once I explain why, you'll understand.

Two weeks ago was uneventful, aside from my twice-per-week chiropractic adjustment and acupuncture. My headaches were pretty much status quo.

Last week started with a visit with my local Nephrologist. We discussed everything that the Kidney Clinic is doing, and how that ties into his efforts on my part, and when to expect to take over my care full-time [as per Clinic instructions]. Also, upon seeing my daily vitals sheet, he increased my Clonidine intake from 0.1 mg 3x/day to 0.2 mg 3x/day, and put me back on Sodium Bicarbonate tablets to help reduce acid imbalances in my stomach which might cause any increasing nausea.           I'm taking two 325 mg tablets twice each day. We also discussed upcoming dialysis, my peripheral access, needed med refills etc. 

Finally, I asked about the possibility of have a 'port' installed for better, more reliable vascular access. My doctor explained the placement of ports ( on the       R upper chest with the line going to the L Carotid), as well as the risk of infections, risks of damage to the port, etc. After his thorough explanation, I decided against getting a port.

It was a good visit, and we have a good plan moving ahead.

Part of that plan is to contact my Vascular Surgeon to have my still-working Loop Graft looked at to determine if it can be salvaged, or whether a new one is needed. The only option that my Nephrologist is aware of that could save the Loop Graft is by ballooning it, much like an artery would be opened. We'll just see...

Now, the reason I am so delayed in getting this entry written.

I have been on the higher dose of Clonidine (0.2 mg) before; but it has been a long while. When I started back on the higher dose, I was hit with excessive sleepiness. I remembered that Clonidine itself can cause sleepiness; but when I was on it before, my body was adjusted to the med. So, I spent all of last week (Mon. evening through Saturday afternoon) sleeping a lot! More so on Tuesday, Wednesday and Thursday; but by Friday, the sleepiness was markedly decreased. As of this writing, I am still getting tired from the med, but for the most part, I am carrying on as usual.

Also because of the sleepiness, I did not work out at all last week. I simply did not have the energy. Then yesterday, I noticed that the big toe on my L foot was swollen and red. I hadn't hit it on anything, dropped anything on it or caused any other type of trauma that would make it swell up and become sore. Plus, I started seeing some weeping of clear fluid from beside the outer part of the toenail. So, I've been soaking my foot in an Epsom salt bath two times each day, and covering the toe at night with a loose gauze bandage. If the toe is not markedly better within a few more days, I will go see a doctor about it. 

My weight has been fairly consistent; currently hovering between 119.6 Kgs and 120.5 kgs. For now, my kidney is excreting all of the fluids I take in every day. I don't know how much longer this will last, but I'll gladly take however long the kidney holds on.

The acupuncture is making more headway with the neuropathy in my feet. I noticed late last week that I now have areas on the bottom of my R foot that I can actually feel for the first time since about 2013. These areas are around the front of the ball of the foot, the underside of the R edge of the foot, and underneath several toes.  Though progress in healing is slow, I am regaining feeling in both feet, and reducing the burning sensation.

Plus, when the doctor is putting in the needles on my feet, there are now locations that actually hurt slightly when the needles are inserted. This is a great sign that the nerves are finally healing!

Next, my latest labs...

01 Sept 20 Labs:

*Creat:   3.60

*HCT:   32.8 (-1.9) Low

*Hemo:   10.2 (-0.5) Low

*Lymph:   6.8 (-1.3) Extremely Low

*Lymph ABS:   0.5 (-0.1) Very Low

*Neut:   75.5 (+0.3) High

*Neut ABS:   5.3 (NC) IR

*RBC:   3.57 (-0.22) Extremely Low

*WBC:   7.0 (-0.7) IR

*BUN:   57 (+10) Extremely High

*CA:   9.0 (NC) IR

*GFR:   18 (NC) Extremely Low

*Gluc:   112

*K+:   4.1 (+0.3) IR

*NA+:   139 (+1) IR

*MG:   2.2 (-0.1) IR

*Phos:   4.2 (+0.6) IR

*Prot:   6.9 (-0.2) IR

            NC= No Change         IR= In Range

With my labs ranging from great to terrible, I will probably now focus only on a few key results.

First, the electrolytes. Highlighted in blue, these are highly important as I move forward. They tell me how well the kidney is maintaining the proper water/electrolyte balance in my body.  As of now, these all look great!

Second, all things pertaining to Red Blood Cells. All of these results are down; the RBC's significantly lower. If this continues, I can foresee another Aranesp shot in my future.

Lastly, my immune system continues to struggle; which makes what is happening with my toe so concerning. Any infection could spread rapidly, which is why I am paying attention to it all day.  

All of the other labs show now usual results.

Also last Tuesday was my latest infusion of Belatacept. Aside from a good bruise on my L arm, the infusion went off without a hitch. And, September sees my having two infusions, as the next one is scheduled for the 29th.

I am going to end this entry here. That Clonidine is kicking in and my brain is starting to feel tired.

The only upcoming appointments I have right now, is at the Kidney Clinic on the 17th.  Plus, my next round of labs are next Tuesday.

Until the next time...

Good Health to All!

ScottW