Post-Transplant Update: 21 October 2019

Things have been looking up, for the most part.

I had my follow-up visit with the Oncologist last week, and it went quite well. He had looked through my lab results of the past year, so he was very familiar with my progress from that standpoint. The doctor had no concerns about me, and stated that there would be no need for further visits unless we see some random spike of my white blood count.
Now THAT is a doctor visit that I like!

Following that appointment, I had to run a number of errands that took several hours in total. By the time I arrived home, I still had some energy--which was great! Plus, the following day, I was tired, but not exhausted!
This illustrates that my energy and stamina are indeed increasing, which gives me a lot of hope that the future is getting better and better.

On the flip-side, my headaches have been terrible. My TMD is definitely being obstinate about settling back down! However, I have also had days that there was minimal TMD involvement at all, and some headaches more apparently due to the Isosorbide and Protonix than anything else. 
Now, the casual observer may say, 'How do you know when your TMD is better or worse?; which is a fair question, and which I do not recall if I have ever fully shared...

My TMD is centered on the R ball joint of my jaw, with the muscles which hold the joint in place deteriorating, which allows the joint to move out of position. When not in proper alignment, the joint moves a good bit out of place. This movement can result in extreme muscle fatigue over and above the ball joint (and creates pain on palpation of the joint area), physical clunking of the joint whenever I chew--or even open my mouth very wide--clicking of the joint when I talk, hard and painful clunking of the joint whenever I move my jaw from side to side, auditory and visual (light) sensitivity and excessive side to side movement of my jaw whenever I eat.
All of this can happen simultaneously during the worst headaches (that rank a 12 on a scale of 1-10), or with just one or several contributors at any given time during my "normal" headaches. 
There is no rhyme or reason for one, a few or even all of these contributors happening at any given time. They just happen. When the headaches are under control, my NTI occlusive devises help to prevent the underlying muscular tension. The trick is to get the headaches to stop flaring up in the first place; which I have done before. Remember, I had my TMD under complete control for ten years, so I know that it can be done again.

Removing the suspected med contributors of Isosorbide and Protonix could give me a better indication of how the TMD is all by itself. Assuming I can go off of both meds, it will likely be a week or more before the side effects of both meds are no longer contributing to my headaches. Once we get there, I can finally see just how much the TMD is creating the headaches on an everyday basis.

So, after all of that, in answering the earlier question about knowing when the TMD is involved...after nearly 34 years of dealing with severe TMD, it is quite easy to differentiate between TMD and non-TMD headaches. For non-TMD involvement, my jaw clunks lightly, or not at all; either during chewing or any side to side movement. I am not audio or photosensitive. I can press on the R ball joint and it does not hurt either during the pressure, or immediately following. And a dose of Excedrin or Tylenol completely blocks the pain, and it does not return.
Plus, there are two intangibles:
First, TMD headaches have a certain feel that is unlike any other headache. It is difficult to put into words, but the difference is obvious.  Second, my worst TMD headaches actually have a taste to them that is as real as the flavors of putting food into your mouth. In essence, it is sort of a faint metallic-type taste that is diffuse, but definitely there, and with no apparent source; and until the severe headaches die down, it is constantly present.  And THAT is how I tell whether or not there is TMD involvement in my everyday headaches.

And on that front, I have my next follow-up visit with my Cardiologist on Halloween day, 31 October. We will discuss continued use of both the Isosorbide and the Protonix, and     
I will remind him that my heart was healthy once more after just six months following my transplant; and all water [from the central lines during dialysis] in the atria was resolved. The additional time on the Isosorbide was purely precautionary, as well as giving my heart additional time to strengthen.

Preceding that appointment, I have my next lab draw and Belatacept Infusion on Tuesday, 29 October. As the Cardiologist visit is just two days later, I will wait until Friday, 01 November to do my next blog entry.

Again, I do not remember if I have so fully explained TMD before, and if I have, then please accept my apologies. If not, now you have a better basic understanding of this condition.


My urinary output has been up and down since my last blog entry; but I have lost weight overall, by about 1.5 kg. I had gotten down to 124.9 Kg two days ago, but each of the last two days I have retained water, and my weight this morning was 125.6 Kg.

My appetite has been good, but I have chosen to eat only to being 'satisfied' and not eating so much that my current activity level will not burn off all of the sugars and calories I take in.
My water intake remains at about 2.5 Liters each day,  plus another 30 or so ounces of other fluids, for a daily total fluid intake of approximately 3.25 Liters.

Though I remain tired most of the time, my sleep has been good, my dreams under control, and I am usually able to get right back to sleep after awaking to relieve my bladder (from 2-4 times each night).

So, not bad. I am seeing definite overall improvement, and my brain seems to be shifting again with more positivity, and an increasing desire to start working out again. If I can get my feet to be pain-free, then I can easily, readily do both.

And...there you have it for today.

I hope that each person reading my blog is having a good day...even if 'good' is the best you can manage because of how you are feeling! 

Again, my next entry will wait until around 01 November following my next lab results, Infusion and the upcoming Cardiologist visit. Until then...

Good Health to All!

ScottW