Post-Transplant Update: 19 June 2019

This entry is late simply due to the fact that we had family come stay with us last week, and I just wasn't able to sit down to type up the latest information. So let's get started...

To begin, I had my monthly labs drawn last Tuesday. 

11 June 19 Labs:

*Creat:   2.89 (+0.12)

*HCT:   35.9 (+0.7) IR

*Hemo:   11.5 (+0.2) IR

*Lymph:   13.0 (-2.4) Low

*Lymph ABS:   1.0 (+0.1) IR

*Neut:   77.8 (+1.7) High

*Neut ABS:   5.7 (+1.1) IR

*RBC:   4.05 (+0.08) Very Low

*WBC:   7.3 (+1.2) IR

*BUN:   35 (-7) High

*CA:   9.8 (+0.3) IR

*GFR:   23 (-1) Extremely Low

*Gluc:   104

*K+:   4.5 (-0.3) IR

*NA+:   140 (-1) IR

*Prot:  Not taken 

*MG:   2.4 (+0.2) IR

*Phos:   3.6 (-0.3) IR 

*BK Virus:   Not Detected

      NC= No Change     IR= In Range

Urinalysis 11 June 19:

Appearance:   Normal

Color:   Normal

Glucose, UR:   Negative

Hgb,UR:   Negative

Ketones, UR:   Negative

Leuk Esterase:   Negative

Nitrite:   Negative

pH, Urine:   6.0 (Normal Range is 5.0-8.5)

Prot, UR:   Negative

Specific Gravity, Urine:   1.01 (Normal Range is 1.003-1.030)

The only item I want to highlight is the Red Blood Cell (RBC) count. For the first time in months, though still well below the normal range, the RBC's finally went above 4.0! I have been waiting for that to happen since my last rejection episode.  Though the rise in the RBC's has been agonizingly slow, the fact that it continues to rise is a great indicator that the kidney continues to communicate with the bone marrow to produce the cells.

All the rest of the labs were good--or great--and show stability. Though there are still lab values that are out of their proper ranges, the fact that I am stable is excellent!
The urinalysis this month is exactly the same as it was in May...another fantastic sign of renal stability.

Next, my monthly IV infusion of Belatacept was also last Tuesday. Though there was one missed cannulation attempt (which left a nice bruise on my L arm), the second attempt was successful and the infusion was uneventful. As with last month, I have had zero side effects from the med.

Also last week, I had my first visit with my new nephrologist. He had quickly read a brief part of my [very extensive] post-transplant file, and expressed his astonishment with everything I have been through ever since the transplant. He questioned me about meds, the infusion, my general well-being and how I feel I am progressing. All in all, it was a good 'get to know you' visit. He had no changes to anything at this time, and had my next visit scheduled three months out [in September].
I think the new doctor will be a good fit for me.

Next, the TMD headaches have never lessened after the sudden increase two weeks ago. Despite this, my average daily use of T3's has fallen to 2.7; which is terrific!  The recent uptick in the headaches though has been severe. The intensity and sharpness have both increased significantly, and my jaw (R side joint) has been clunking really hard and painfully whenever I chew. So, I do as much as I can to relax, limit bright sunlight exposure, and get proper rest. That last one has, unfortunately, been difficult to achieve. I have continued to get plenty of sleep, but the restfulness has not been able to happen. As this too lends to an increase in headaches, it is no wonder that the TMD has exploded.
So, I just go back to everything I need in order to get the jaw to relax as much as I can.

My energy is up. After doing a bunch of housework a couple of days ago, I realized that I wasn't wiped out! This is an outstanding development! I have been waiting for a long while to have such a large increase in my energy to occur. Now, doing so much work still made me extremely tired the next day, but at least I had all that energy!
Remember...small victories on the way to great results!

I have had a change in my nightly urinary voiding over the last ten days, or so. Usually, I will get up between 2-4 times at night, voiding between 800 cc's and 2 Liters (2,000 cc's). Recently, these have both decreased to 1-2 times each night and 400 cc's to 1,100 cc's.
Yet, my weight has either stayed about the same, or decreased slightly. In fact, my weight the last two days has been 124.8 Kg's. This tells me that my daytime voiding has been higher, so that my nighttime voiding is lessened.
I do not know if this change is permanent, or temporary, but I will not complain about it at all!

I am going to wrap up this entry here because my headache is just nasty today--despite meds--and I need to stop typing, stop thinking so that I can go relax some more.

Good Health to All!

ScottW

Post-Transplant Update: 06 June 2019

To start, today is June 6th, the 75th Anniversary of the D-Day assault on the beaches of Normandy, France. Every year, I always take a few minutes to reflect on those who fought so bravely against terrible odds; especially thinking of those who gave the ultimate sacrifice on that bloody day. I am thankful for those brave men of our Greatest Generation, and for all of the horrors and hardships they had to endure so that we all could continue to enjoy the freedoms we are all blessed so richly with.


Now, I waited an extra week for this entry for two reasons. 1) Last week was pretty uneventful.  2) I had my latest visit with my local nephrologist yesterday and want to report on that.

To start, a quick recap of last week...

Once our cold, wet weather snap ended, I went on a couple of short walks. Both were slower than normal. Here's why... Last Wednesday, while working on dinner, I turned to my left and felt (and heard) a ligament on the outside of my L foot pop. Aside from pivoting on my foot, there was nothing that forced that ligament to do this. I've had this happen before, so normally it would be no big deal, aside from some discomfort when walking. However, in the past, I would always wear shoes which would keep that ligament in line, and the foot would heal in a couple of weeks.
Unfortunately, with the neuropathy in my feet, I am not wearing shoes hardly at all, so the ligament is very slow to heal, and I seemingly constantly aggravate the injury. 
So...fun times there.  :o(
Anyhow, when I do go out on my walks, I wear my New Balance shoes, and just put up with the neuropathic pain and burning. At least the shoes help me to walk with reduced pain, even if my little circuit goes slower than normal. 

Also, my weight has been bouncing around between 124.8 Kg and 125.6 Kg. I continue to hope that the downward vacillation is still proceeding, and am doing what I can to help this along in a healthy manner.

Ok, now, yesterday's appointment.

Unfortunately, this was my last visit with my nephrologist. He has accepted a position doing renal research in another State, something he really enjoys. Because of his earlier announcement [regarding his upcoming move], I have already lined up a new nephrologist who is associated with the private practice of one of the Kidney Clinic physicians, and came highly recommended. I have my first appointment with him next week.

Now, back to yesterday.
The doctor is pleased with my ongoing recovery, and agrees with me on the very long-term recovery that lies ahead. He is confident that I will receive great care from the new nephrologist whom he has heard great things about.

My BP, Pulse and Respiratory Rate are all in good shape. Though my weight is higher than expected, there is no concern about it, as yet. He is pleased with my progress on daily activity, as well as with my efforts to strengthen my legs via my walking. He made no changes to any meds, and will send my records to the new doctor this week. As he put it, "Your new doctor will have an eye-opening time reading about your odyssey; not your typical dialysis or post-transplant recovery." We both chuckled at that comment!

I also learned something new that helps my brain settle down a bit. 

When discussing my recent Blood Pressure trends, he stated, "The higher BP is OK due to the slight stenosis you developed from the renal artery occlusion after your transplant. Your kidney needs a higher BP to offset the damage to the arterial wall so that adequate renal perfusion occurs." He then explained that, when taking my BP readings [twice each day], I should record the accurate number, but mentally deduct about ten points from the systolic reading to get a good approximation of where my BP would be with two healthy kidneys.
This was terrific information!

I also stated that my TMD headaches were diminishing, and relayed the info I wrote here about my T3 usage from late April to late May. Plus, I recently did a pill count of my latest T3 Rx, and after 11 days (at that time), my daily usage was at 2.36 pills per day!
Further, that I was beginning to use Excedrin more and more before using a T3 because the Excedrin was finally starting to be effective all by itself. My doctor was very happy about this news!

And on that front, aside from days that I awake with a TMD headache (like today!), I have recently been taking one or two T3's each day. That's it!  My efforts at minimizing the TMD are starting to bear fruit!  I am under no illusion whatsoever that there won't be times that the headaches come roaring back with a vengeance--because they most certainly will, as demonstrated by my 15 year effort to control the headaches--but at least I am seeing (or at least glimpsing) the light at the end of this incredibly long, painful tunnel.

And that's all I've got for today!

Next week, all on the same day, I have my monthly labs, Belatacept infusion and the first appointment with my new nephrologist. I will be sure to get everything written up.

So, until next Wednesday, or thereabouts...

Good Health to All!

ScottW