After posting my last entry, I was discussing what I had said [in the blog] about my ongoing TMD headaches, and she reminded me that I had wanted to tell you a huge reason why they are so bad right now. So, I'll start this blog entry talking about that...
A huge aspect of Temporomandibular Dysfunction is stress on the ball joints of the jaw. To remind you, my TMD is centered on the R ball joint, and its ongoing muscular degeneration surrounding said joint. This causes my jaw to move an exceptional amount both left and right, creates loud pops when the joint settles into place and results in "band headaches" across the top of the head to the L joint. Additionally, neck tension can add significantly to the already-existing headaches which only intensifies and prolongs the headaches themselves.
Here is the typical 5-step TMD wind-up: 1) Jaw clenching/Chewing hard foods/Any untoward straining of the jaw/facial tension leads to 2) Muscular stress, which leads to 3) Muscular tension, which leads to 4) Muscular Pain/Bruxism which is the last step to 5) Intense headaches.
Now, over the past 15 months I have had:
-Four hospitalizations (28 days in total!)
-Two major surgeries (transplant, triple hernia repair)
-Two intubations (horrendous jaw stress!)
-Three bone biopsies
-Four renal biopsies
-Four renal angiograms
-Bladder catheter removal
-Two cardiac stress tests
-Multiple renal ultrasounds (all of which caused excessive abdominal pain!)
-One Neupogen shot (and very painful reaction)
-A long, ongoing and exceptionally painful surgical recovery
-A large number of painful IV placements
-Many, many in-hospital blood draws (most of which hurt)
-A host of other and varied tests, and a number of medication changes; all of which create stress on the body. (I'm positive that I am missing a few other items on this list, but...you get the picture.)
What all of the above listed things have in common is intense jaw clenching, pain and stress on my jaw. Essentially, I have had an extraordinary amount of factors that have put my jaw into an incredible amount of stress which all result in muscular tension which is focused in the muscles of the jaw. All that tension inevitably results in a huge increase of headache frequency and intensity. In fact, there is so much stress on my jaw that it cannot relax sufficiently to reduce the headaches all on its own.
When I was officially diagnosed (Dx) with TMD by the doctor who is now recognized as the leading authority in TMD research and treatment, he told me that he had never seen a jaw as stressed as mine was. In fact, of all of his research patients--of whom I was the last--the average time to get a patients' jaw to relax was about three weeks. For me, this was impossible. So much so that after an unsuccessful first year of efforts, he finally stated to me, "Forget my fee, this is personal. We are going to get your headaches to stop." It still took another full year for that to happen!
But the point is, that it did. And (again) they remained under control for ten years!
With all the terrible stress that my jaw has been subjected to ever since the transplant, it really in no wonder that I am having a tough time knocking the latest headache down.
So, though a bit redundant, that's a much better explanation of TMD and why it is so hard to stop the headaches once you have had prolonged stresses on the jaw.
A few days ago, I had a bit of a breakthrough that has helped the headaches to decrease somewhat. For years, whenever I laid on my R side to sleep, I have always heard the rushing of blood in my R ear, accompanied by the sound of my heartbeat. I'd never really thought much about it, and would just roll over to my L side because I would never hear the same thing when my head rested on the pillows. Well, I was laying in bed [earlier this week] trying to sleep with another terrible headache, that rushing beating sound reverberating in my R ear, when I had the thought that maybe my jaw was out of place. So, I rolled onto my L side...no sound. I then rolled back on my R side, and that loud sound instantly returned just as soon as my head settled onto the pillow. So, with that thought that my jaw might be out of place, I moved my jaw upward (towards the L) and the rushing and heartbeat suddenly stopped! So, while falling asleep, anytime I heard those sounds, I would move my jaw back into place; and continue to do this every night. Ever since then, my headaches have been less intense, and my medication usage has decreased.
Wow! After thirty plus years, I had made a new discovery about how to potentially reduce my TMD headaches! I had never even occurred to me that there was this correlation between the sounds in my ear and my jaw being displaced.
Maybe, just maybe, this tidbit might help others [who are reading this] who have severe TMD headaches.
Alright, let's move on...
My latest Kidney Clinic visit happened yesterday. Everything is looking good and heading in the right direction. There are no medication changes at this time, and no other issues that need addressing. My next visit with the clinic will be in five weeks.
This next Monday I have a visit with my local nephrologist, just to get him up to speed on everything. It is the restart of transitioning away from the Kidney Clinic; though I will still be going to clinic for at least two of three more months.
In last weeks' entry, I noted that my Tac reading should go down this week, and my latest labs certainly reflect this...
14 Aug 18 Labs:
*Tac: 2.0 (-1.5) Dropping, as anticipated
*Creat: 2.40 (-0.14) Dropping
*CA: 10.3 (+0.2) IR
*RBC: 3.59 (-0.07) Very Low
*WBC: 6.1 (-0.3) IR
*HCT: 33.4 (+0.5) Low
*Lymph: 6.9 (+4.9) Very Low
*Lymph ABS: 0.4 (+0.3) Very Low
*Neut: 82.5 (-3.5) Extremely High
*Neut ABS: 5.1 (-0.5) IR
*GFR: 29 (+2) Extremely Low
*BUN: 35 (-7) High
*Gluc: 99
*Phos: 3.3 (NC) IR
*Hemo: 10.5 (-0.3) IR
*K+: 4.0 (-0.2) IR
*NA+: 141 (NC) IR
*Prot: 6.9 (-0.3) IR
*Mg: 2.0 (-0.2) IR
*BK: Not Checked
*CMV: Not Checked
NC= No Change IR= In Range
As highlighted above, let's go over a few labs.
The Tac drop was huge! Going down to just 0.5 mg per day has had the effect we anticipated. This should continue dropping incrementally.
With the drop in the Tac value, the Creatinine also decreased proportionally. This too should continue trending downward. I am hoping that the drop continues until the number holds steadily under 2.0.
Though the Hematocrit improved and the Hemoglobin holds steady, the RBC's are still lagging behind. While I do have increased energy, until the RBC's catch up, I will still be tired most of the time.
With the precipitous plunge last week in my Lymphocytes, I expected only a small increase in that value. To see a huge increase this week was a very unexpected, but most welcome development. Though I must still take great precautions, I can stop being so hypervigilant about protecting myself. I was told at clinic yesterday that this value may jump around for a bit longer before it stabilizes again.
That puzzle I was working on last week...I completed it by this past Monday; way ahead of when I thought I'd finish. This tells me that my brain is clearing up with the slight energy increase, and I am again starting to see patterns, recognize odd shapes and can concentrate on details better. This ability should continue to improve as I work on my next, extremely complicated puzzle; which I started yesterday afternoon.
I continue using the Protonix daily, and my nausea has remained minimal. The doctors at Kidney Clinic agreed with me that the nausea is most likely due to all the post-rejection meds I am on. So, I will continue using the Protonix until all the extra meds are gone, and the nausea decreases.
My weight has dropped a little since last week. This morning, it was down to 115.4 Kg; down from the weeks' high of 116.7 Kg. Hopefully, I will soon return to that recent low of 114.2 Kg, and continue downward from there.
In general, I am feeling better, overall. My energy is up slightly, my appetite has increased, my kidney is eliminating all the fluids I am drinking, the swelling in my feet is consistently better, there have been no incidences of diarrhea in weeks, my headaches are reduced somewhat and I just feel like I am on an upswing. Let's hope this remains the case for some time to come!
I think that's about all I have for today.
Have a great week!
Until next time...
Good Health to All!
ScottW
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