Post-Transplant Update: 20 November 2019

...and now to finish up.

I just returned from my visit with doctors at the Kidney Clinic. They agreed that I needed to be off of the Protonix simply because it is so hard on the kidney. It was also agreed that it was time to lose the Isosorbide, and replace that with a better BP med, Amlodipine (trade name Norvasc, common name Amlodipine Besylate). The dosage will be 10 mg 1x/day, and with my morning meds.

(from Drugs.com)

"Amlodipine is a calcium channel blocker that dilates (widens) blood vessels and improves blood flow.

Amlodipine is used to treat chest pain (angina) and other conditions caused by coronary artery disease.

Amlodipine is also used to treat high blood pressure (hypertension). Lowering blood pressure may lower your risk of a stroke or heart attack.

Amlodipine is for use in adults and children who are at least 6 years old."

As for side effects, the most commonly reported is that of peripheral edema of the feet. Though this does not always occur, the best way to treat that edema is by raising your feet above the level of your heart when you sleep...if you can tolerate doing this.
IF this med creates too much edema, we will try another.

Also, I can discontinue the Isosorbide immediately, and begin the Amlodipine tomorrow (Thursday) morning.

As far as the Protonix, I cannot just get rid of it. I must do a slow draw-down off the med over a period of about three weeks. So--as discussed with the doctor-- starting tomorrow, I will take one Protonix every other day for one week. On week two, I will reduce that to every three days. In week three, I will take one Protonix every four days, then be completely done with it.

I will let you know how things go with both meds.

Next, the doctor wants me to stop taking Sodium Bicarb tablets (2-25 mg tabs 2x/day) entirely. It was explained to me that the Sodium Bicarb (aka Baking Soda..literally) helps the blood maintain the proper pH balance. As my pH has been looking great, the elimination of the Sodium Bicarb should not affect my labs. IF it does, then I can always go back on these benign tablets once again.

I have a follow-up appointment at the Kidney Clinic in two weeks (04 Dec 19). We will go over my latest labs, and discuss my progress on the Amlodipine, the Sodium Bicarb and the Protonix draw-down. If we need to adjust anything, we will do it then.

In the meantime, as per usual, if I have any untoward side effects from the new med--including excessive peripheral edema--then I am to call my Clinic Coordinator.

So, I lose two meds, but pick up one. However, without the Sodium Bicarb, I am taking 28 fewer pills each week! I'll take that!

Overall, the Clinic doctors are very pleased with my progress, and hope, like I do, that the new med will help me get moving forward in my healing and strengthening once again.

Next week I have both my monthly lab draw, and my next Belatacept infusion. With the Thanksgiving holiday next week (and extended family in town), I may not get to updating my blog until later in the week; but I will try to get to it as soon as possible.

For my U.S. readers, I wish you all a Happy and enjoyable Thanksgiving!

For my international readers, I hope that you have a terrific week, and are safe in all that you do!

Good Health to All!

ScottW

Post-Transplant Update: 19 November 2019

Despite there being a sixteen day gap between blog entries, I am going to start this blog today (the 19th), but finish tomorrow afternoon for reasons I will explain. 
Let's get started...

I thought that I'd start with a bit of good news. My headaches have been on a definite down-cycle over the past week. In fact, there have been three or four days that I have only taken Excedrin, and the rest of the week I have only had to take one, maybe two T3's, and the rest of the day just OTC meds. There was even one day that I took one dose of Excedrin in the morning, and then nothing for the rest of the day!
As always, I don't ask why...I just enjoy [fairly] headache free days. And though I know it won't last long, the past week has been another indicator that the TMD will be under control once again in the near future.

The reason I have taken so long to get this update written is because my wife and I have been in the beginning stages of getting a home-based business up and running; and all of my time is either spent on that project, recuperating from my efforts and/or getting housework and cooking done. 
We decided to start this business because it is highly probable that my ability to find profitable work after a ten plus year gap in my employment, coupled with my ongoing recovery and in addition to my age, will be difficult, to say the least.

Next, my urinary output remains consistent, and my weight continues hovering between 125-126 Kgs. And as I had reported earlier, my daytime output still lags behind the evening and nighttime output. I've had three nights in a row now that have seen output totals of 1300cc's, 1700cc's and 1600cc's. So long as I get rid of all the fluid I take in each day (about 3.25-3.5 Liters), I am a happy camper!

With getting up two or three times each night, my sleep has been pretty good, overall. There are nights that I have a difficult time getting back to sleep, while other nights I am asleep almost as soon as my head hits the pillow. And my dreams remain completely under my control, so I am pretty sure that those bad looping dreams, and the ones in which I have zero control over what is happening, are now a thing of the past; and my conscious control of the subconscious has been firmly reestablished.
Just now, I realized that the further away I get from all of the tests, uncertainty, surgeries, dialysis treatments, vomiting, horrible nausea, etc, the greater control I gained over my dreams. Personally, I found that thought extremely interesting!

My energy level continues its agonizingly slow progress. However, I recently started having a strong desire to start working out again. Granted, I still cannot do much towards that; but having that desire rekindled is a fantastic sign that things are moving in the right direction, and that I am farther along in my recovery than I had thought.


Now, the reason I am starting this today and finishing tomorrow is because the doctors at the Kidney [Transplant] Clinic agreed with my Cardiologist that they should oversee my changing meds from the Isosorbide (and Protonix) to another BP med(s); and that appointment is tomorrow, 20 November. 
I will let you know how that discussion goes, and what the plan is so that I can start moving forward, physically, once again, and stop being so tired all of the time; as well as likely helping to reduce my non-TMD headaches.

And with that, I am going to end for today...

Post-Transplant Update: 03 November 2019

[Though a couple of days late] As promised, here is my latest update that includes my lab results and the visit with my cardiologist. Let's begin with labs...


29 Oct 19 Labs

*Creat:   2.41

*HCT:   36.8 (+0.2) IR

*Hemo:   11.8 (+0.2) IR

*Lymph:   10.8 (-3.0) Low

*Lymph ABS:   0.8 (-0.1) Low

*Neut:   6.2 (+1.0) IR

*Neut ABS:   81 (+3.1) High

*RBC:   4.15 (+0.05) Very Low

*WBC:   7.7 (+1.1) IR

*BUN:   34 (-3) Very High

*CA:   9.3 (+0.3) IR

*GFR:   29 (+3) Extremely Low

*Gluc:   108

*K+:   4.5 (-0.3) IR

*NA+:   139 (+1) IR

*MG:   2.1 (+0.1) IR

*Phos:   3.3 (-0.2) IR
          NC= No Change     IR= In Range


*Urinalysis (U/A)

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:   1.013 (Normal Range is 1.003-1.030)

(*These results are exactly the same as each of the past 4 months!)

The labs are looking strong for the most part. My Creatinine took a nice .20 drop, which was unexpected.

The Hematocrit is up, and the Red Blood Count is at [I think] it's highest level yet. Though still 0.35 below the range minimum, it is great to know that the kidney continues communication with the bone marrow to continue producing RBC's. 

The Calcium is holding steady with my current intake of this vital mineral, and I'm seeing some better movement towards the proper ranges of the BUN and GFR.

On the downside, the Lymphocytes took another--and by now almost expected--downturn, dropping from 13.8 to 10.8. One of these days, I'll be able to watch this lab value rise to the proper level (between 20.0-29.0) and stay put. That will be a fabulous day!

So, a great set of labs! 

Also on the 29th, I had my latest IV infusion of Belatacept. Aside from the veins in my L arm being rather difficult, the infusion went well, and there have been zero appreciable side effects.

Next, the visit yesterday with my Cardiologist.

As I had spoken about in my last entry, we discussed getting rid of the Isosorbide, which will allow me to also omit the Protonix.

He suggested that we revisit my taking Amlodipine to help control my BP. When I took this med before, I was either on dialysis, or was in advancing renal failure, so the overall side effects of the med may be different for me this time.

However, he would like me to try this change under the supervision of either the Kidney Clinic, or my Nephrologist since they are better acquainted with my overall history; which I am completely fine with.

Once I am able to contact my Clinic Coordinator I will get that process going.

Also, I received a piece of great news from my Cardiologist...my heart is completely healthy, and he has no further reason to see me! So, I finally have my Cardiology clearance!

Next, my headaches remain in an 'up' cycle. Once in a while--like Friday--I still have most of a day without a headache at all. However, that has been the vast exception over the past two months; but no matter how often they occur, these rare days of no headache pain are most welcomed!

Do you remember when I was telling you about having to drive a car with no shoes/sandals because I couldn't feel the pedals though the soles [due to the ongoing neuropathy]?  Well, this week I forgot to take off my sandals and went about my errands and having no problems feeling the cars' gas and brake pedals! Granted, the pressure sensation is muted, but I was actually driving with shoes on!
This development, though seemingly small, is actually huge! It is a terrific indicator that my feet are healing a bit more than I expected, and that there is hope that I can once again get my feet into socks and shoes.
Though the neuropathy may never fully dissipate, I am more hopeful than ever that my feet are on their way to being back to [mostly] normal.
I am still have those sharp pinprick sensations on my toes and the soles of both feet, which are nerves starting to calm down, and have more small areas on both feet where I can feel slightly more sensations and pressure. So there is definite improvement, with hopefully more to come!

My weight has been steady, hovering at around 125 Kg's. My urinary output appears to be stable, with fluctuations of .2-.6 Kg's on any given day.
The evenings and nighttime are still the best for processing fluids, as these remain the heaviest output times. During the day, I can go two, three or even four hours between voiding. At around 5 p.m. this changes to every 1.0-1.5 hours until bedtime. Then at night, my output ranges anywhere from 800 cc's (0.8 Kg) to 1700 cc's (1.7 Kg).  So long as the fluid comes off each day, I am a happy camper!

And I think that I will end this entry there.

As I go though the possible switch away from Isosorbide, I will keep you updated.

My next scheduled appointment isn't until my November infusion on the 26th; but I will be making at least one more entry before then.

May you all have a great week!

Good Health to All!

ScottW