So, I've just been reading over my latest blog entries to see what I need to discuss to get you caught up, and since I really haven't been keeping notes on things, I will just go over some highlights, address important lab numbers and give a general guideline about the coming months.
First, the highlights...
At the top of that list is that as of mid-July (2017), I am no longer dependent on my constant walking companion of the past seven plus years...my cane! I have grown strong enough, and without the vertigo caused by my dialysis meds, the cane is now a thing of the past!
I still grab for it once in a while because I never left the house without it. Once, it even made it to the car before I realized that it was there. I have to admit that walking without the cane is both wonderful, and really, really odd!
The Transplant docs still want me to use it when I walk for exercise[ because of the continued soreness and healing from surgery], but even using the cane then is becoming less and less. In fact, the last couple of walks I've taken have NOT included the cane at all! So, losing the cane is a HUGE win for me!
Next, my meds have been dropping off in number and variety; some by schedule, and others because I just don't need them anymore.
Gone are the Bactrim, Acyclovir, Calcium with vitamin D, Omeprozole and the Isosorbide.
Reduced are the Prograf (Tacrolimus), Prednisone, Cozaar, Carvedilol and the Cellcept.
Added is Zantac (1x/day)
Remaining the same are the Daily Vitamin and the low-dose Aspirin (ASA).
As time goes on these will be further reduced or eliminated. At this point I do not foresee any new meds...but that could always change.
Tests:
Last Wednesday (09 Aug 17) I had a 3-month surveillance Biopsy of my new kidney, as well as an ultrasound of the Renal Arteries (to verify adequate perfusion of arterial blood flow). The Ultrasound showed terrific perfusion of the kidney.
While most renal transplants have only one artery, my kidney has two--thanks to the donor. The first artery is large and carries the majority of the arterial blood. The second artery is small, and carries the remainder of the perfused blood flow. This one was nearly hidden by a renal vein that was overlaying the artery on the ultrasound image, so verifying its veracity and health was difficult and required extra time under the pressure of the probe.
The biopsy was quick...once you go in for the test. Prior to the procedure there is an IV placed, a pre-test urine sample given (to use as a comparison against your post-biopsy urine), blood work that must be done, a clotting factor [of the blood] to check--mine is great!--and histories to go over. In all, the pre-test things take about two hours.
Once in the room you see an ultrasound machine and a tray with BIG needles and various medical instruments. You are given a dose of light anesthetic meds that mostly relax you--I was given Fentanyl--and the area is imaged via the ultrasound, then scrubbed and sanitized. The Radiologist performing my biopsy talked me through everything, and answered all questions...even during the procedure!
The biopsy needle is guided to its target via the ultrasound. I was even shown exactly where on my kidney the needle was placed (the needle tip looked like a small white hole on the image). Once in the correct location, the special needle--kind of a needle within a sheath--is removed from the sheath, and a second needle used to capture the renal tissue, is inserted. The sheath is pulled back slightly exposing the area on the needle that captures the tissue. Once that is exposed, you hear a clicking sound as a sample has been plucked from the tissue.
That needle is removed and a second special biopsy needle is inserted to capture a second tissue sample. During all of this I was feeling quite a bit of pain, so I was injected with a second dose of Fentanyl, which helped immensely.
Anyhow, after the second sample is retrieved, both tissue captures are immediately sent to a lab to verify that enough tissue was removed. If not, another sample would have to be secured. In my case, a third sample was not needed, so the radiologist removed the sheath needle, cleaned up the site, stanched any blood loss, applied a large bandage, and then it was all over.
After the biopsy, patients are required to lay still for over four hours to assure that no internal bleeding is occurring, nor any blood in the urine is detected.
Luckily for me, I slept most of those four hours as the fentanyl kept me lightly sedated.
Once the four hours were up, I still had zero blood in my urine, and my abdomen was soft and pliable with no indication of internal bleeding.
The whole day left me feeling extremely sore over the kidney and the rest of my abdomen, and sleeping in bed that night was difficult, too.
The next day [at Kidney Clinic], I learned that the Ultrasound looked awesome, and the biopsy showed absolutely NO SIGN of organ rejection. So, fantastic news all around!
Now, as far as lab numbers, these are quite different from the dialysis labs that I have to do for nearly five years. Plus, the emphasis of those labs is totally opposite from the dialysis numbers, as well.
There are LOTS of lab values that are evaluated, but I am only going to illustrate the really important numbers. I will keep these updated, just as I did the dialysis labs.
Tacrolimus (Tac)--The level of Prograf in your blood at trough level.
Creatinine--An important indicator of renal health.
White Blood Count (WBC's)--Protects the body from foreign objects (transplanted organs).
Red Blood Count (RBC's)--Affects oxygen and nutrient distribution in the body.
Hematocrit (HCT)--Level of Red Blood Cells in the body.
Lymphocytes (Lymph)--The overall health of the immune system.
Lymphocyte ABS (Lymph ABS)--Level of WBC's in the body.
GFR (Glomerular Filtration Rate)--How well your kidney processes fluids and waste.
BUN (Blood Urea Nitrogen)--Another indicator of Renal health.
Glucose (Blood Sugar)--Indicates healthy natural insulin levels.
Phosphorous (Phos)--Indicates the health and strength of muscle and bone.
My labs are drawn twice weekly right now, and I will post all my latest numbers so you can see the progression of these vital lab values. So, here are my latest from 14 Aug 17...
Tac 13.1 (This is very high. Current range is 6.0-9.0. Bumps in levels will occur and are adjust through meds.)
Creatinine 2.0 (Very high. Current target is 1.40-1.50. Addressed via meds.)
WBC's 1.90 (Low. This is kept low for anti-rejection needs. But, this is too low. Not sure of target range.)
RBC's 3.65 (Low. Normal range is 4.60-5.90.)
HCT 34.20 (Normal Range (NR) is 41.0-53.0)
Lymph 23 (This is doing really good! Normal Range is 24-44)
Lymph ABS 0.4 (For a transplant patient, this is fantastic! Indicates zero excess WBC's that could attack the transplanted organ.)
GFR 37 (NR is >60. This will fluctuate in transplant patients).
BUN 47 (NR 8-20. This will decrease as your body adjusts to the kidney, and as long built-up waste products are eliminated from your body.)
Glucose 98 (NR 65-99. as diabetes is a possible side effect of transplant, this is constantly monitored. Mine has fluctuated between 80-98.)
Phos 4.20 (NR 2.30-4.70)
Of all of these numbers, the MOST IMPORTANT are Tac, WBC's, Creatinine and Lymph/ABS. Before all else, the Transplant Team will address these lab values before all else in a renal patient.
As time goes on, the meds that remain will be fewer and fewer. I should ultimately get down to 1-2 Prograf twice per day, 5mg of Prednisone per day (my current level), possibly .5-1.0 tabs twice per day of Cellcept, the ASA and maybe a single heart med. Once I am at maintenance level on my meds, the lab values should remain consistent at all times. Any variation will, by that point, be indicators of a problem with the kidney, or my overall health.
Next, as I speculated prior to transplant, my TMD (Temporomandibular Dysfunction) has suddenly exploded causing terrible headaches that have no other cause. This happened just this past week (likely after the ultrasound and biopsy) and the pain I experienced in both causing me to tense up my whole body for far too long. I KNOW these are only TMD-related as they feel like TMD, and they actually TASTE like them, too. I say this because when they are intense enough, the TMD headaches carry a metallic taste that I cannot otherwise describe. I also become both light and sound sensitive, and even movement becomes difficult to endure.
These latest headaches carry ALL of these indicators which is why I know that the TMD is causing them. Remember, I lived with these uncontrolled for 15 years, and worked with the world's leading TMD authority who corroborated my S/S's as TMD because he suffers from them, too. Again, the headaches were under complete control for ten years, then reemerged once the whole kidney thing sprang forth. And now that all the surgery pain is gone, and the dialysis meds are a thing of the past, the headaches are once again solely TMD related. I will control them once more, but it will simply take time.
My weight has stopped increasing, as I have begun portion control. My weight this morning was 110.1 Kg's. I had been as high as 115 Kg's, though some of that was due to muscle increase due to my walking far more than I have in a number of years. As time goes on, I expect further weight reduction once I am allowed to do core strengthening. That is about three to six months from now. This time is necessary so that 1) the surgery site heals properly and completely, and 2) the kidney is given the chance it needs to fully adapt to the body, and for the body to strengthen naturally from normal, everyday movements. Any undue stress on the kidney before it is ready could potentially cause rejection. So, I wait.
Until I can begin core exercises, I am walking, and will soon begin to go swimming several times per week. Because of my Medicare insurance I was able to get a free membership to my local city rec center which has a swimming pool, walking track, nautilus and free weights, basketball courts, racquetball courts, treadmills, stair steppers, rowing machines and even strengthening classes that I could choose to take. Not a bad deal, at all!
That is all I can think of for now. I will write another entry either on Thursday or Friday to update you on my latest labs.
Now that all of the transplant, doctor visits, transplant team info and home recovery info has been passed on, I will be writing at least twice each week to keep everything up with the current news. This schedule will taper off as news and updates from the healthcare side become less frequent; but even then, I will continue the blog until I feel it is no longer needed. So I hope you continue to read along with me on this journey.
So, until later this week...
Good Health to All!
ScottW...POST-Transplant Patient!
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