Post-Transplant Update: 26 December 2019

(Because of Christmas, I am getting this started later than I had planned.)

This is my final entry for 2019...

Unlike I had stated in my last post, this entry will not be as abbreviated as I had intended simply because I want to tell you about my headaches and the edema in my feet and lower legs. First off though, are my latest labs...

23 Dec 19 Labs

*Creatinine:   2.54 (NC)

*Hematocrit:   37.7 (+1.1) IR

*Hemoglobin:   12.0 (+0.6) A touch High

*Lymphocytes:   14.1 (+7.3) Low

*Lymphocytes ABS:   1.0 (+0.6) IR

*Neutrophils:   76.1 (-0.4) High

*Neutrophils ABS:   5.4 (+1.4) IR

*Red Blood Cells:   4.26 (+0.13) Low  *Low end of range is 4.50

*White Blood Cells:   7.1 (+1.9) IR

*Blood Urea Nitrogen:   35 (-2) Very High

*Calcium:   9.5 (+0.7) IR

*Glomerular Filtration Rate:   27 (NC) Extremely Low

*Blood Glucose Level:   102

*Potassium:   4.1 (NC) IR

*Sodium:   141 (+4) IR

*Magnesium:   2.0 (-0.1) IR

*Phosphorous:   3.70 (+0.2) IR

     NC= No Change     IR= In Range

*Urinalysis

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)

The labs are looking steady, and decent. 

The Hematocrit rose nicely to solid In-Range territory for the first time since--I believe--my rejection episode in late March of 2018.
In conjunction, the RBC took another uptick, and at 4.26, am just 0.24 away from the bottom of the preferred range. This was a nice surprise!

The Calcium returned to its preferred range after that brief dip to 8.8.

And the best news was the unexpected jump of both my Lymphocytes and the Lymph ABS. A 7.1 jump puts me just below the minimum that I need to be at. Coupled with the Lymph ABS' jump to 1.0, which is actually where it needs to be, my immune system has taken a welcomed turn for the better! So, no more masks (in most circumstances),and I can ease up a bit with my overall precautions.

Lastly, the Urinalyses is steady once more, having only slight variations on the pH, and the Specific Gravity.

Headaches
Without the Isosorbide and Protonix influences, my headaches remain down from their previous, unrelenting low-grade pain. With only TMD now causing the headaches, I have seen old, familiar patterns to them from day to day. Since last week, I have had three days with minimal top no headache pain that was easily controlled with Excedrin.
However, Christmas day, I had a full-blown TMD headache for the first time in about two months. It took strong meds just to get comfortable, and the NTI devices proved of little benefit as the TMD went a bit wild. As of this morning, the muscles in my jaw had relaxed a bit, and I awoke with my headache around a not-too-bad 6 out of ten. 
So far today, the headache pain is under control.

Now, I know that it seems like my headaches have not improved whatsoever. On that thought, I remind you that uncontrolled TMD causes me to have terrible headaches for weeks and months on end without relief. To have one day out of the last two months be a little tough is a monstrous difference from what I know it has the potential to be. Having one rough day is nothing!

Peripheral Edema
Next, the peripheral edema caused by the Amlodipine is slowly retreating. I have not taken any more Lasix since last week, and every day that goes by sees both feet looking progressively better. I have read that ridding the body of the Amlodipine-caused edma can take up to two months; so seeing such a difference already is terrific!

Lastly, I read last week that an uncommon side effect of the Isosorbide is weight gain. This would explain why I saw significant weight gain ever since my rejection episode.
 I had been on the Isosorbide ever since that point, and saw my weight go from 114.5 Kg to 118 Kg, to 122 Kg, and then up to as high as 128 Kg. This happened despite my efforts to limit food, fluids and the use of Lasix to help my body shed excess water.
Anyhow, since I stopped using the Isosorbide, my weight has dropped from 126.5 Kg to 123.3 Kg as of this morning.
I hope that this downward trend continues the longer I am off of that med.

So, there you are...my final 2019 entry. My next one will be not only in a new year, but a new decade, as well.

I hope that you all had a wonderful Christmas! 
May you also have a fun, festive New Year celebration as you ring in 2020.

See you next year!

ScottW

Post-Transplant Update: 19 December 2019

As scheduled, I went to both of my appointments on Tuesday with 1) My Nephrologist and 2) The Kidney Clinic. Here's what is happening...

My Nephrologist is pleased with my overall progress. 
We also discussed the Amlodipine, and he agreed that getting rid of it would be for the best. He also agreed that the Kidney Clinic overseeing this change of meds was the best option as they are most familiar with my complete medical history.  
One thing that I greatly appreciated on this visit was that the doctor wore a mask [this time], stating that he was feeling just a little off, and with my immune system lowered right now, he thought it best to be extra cautious around me.

My next visit will be in mid-March.

Next, I went to my appointment at the Kidney Clinic. After seeing my feet and lower legs, looking at my daily vitals and asking how I was doing, the two doctors [that saw me] readily stated that the Amolodipine had to go immediately. (YAY!!)

So, here's the new approach...

The rest of my current meds will stay the same expect for one thing: I will increase my Hydralazine from 50 mg AM, 50 Mg Afternoon and 75 mg PM, to 75 mg each of the three times per day that I usually take that med. That's it. Again, this is in hopes of having a sustained BP in the proper range. I will continue using the Clonidine booster should I need with BP over 140 systolic.

The current regimen will stay in place for three weeks, and then I'll have another appointment at the Kidney Clinic. Any changes will be made at that time.

In the meantime, I took yesterday (Thursday) to see if the edema in my legs would reduce on its own, which it did not. So, I took a 40 mg Lasix this morning in order to help get rid of the extra water buildup. By this afternoon, the edema was still quite evident, so I took one more Lasix.
I am hoping that I'll only need a few doses of the diuretic; but I will continue using it until my feet and legs look much better.

As far as my vitals since stopping the Amlodipine, they remain a bit high, but with the extra fluid that I'm carrying, this is really not a surprise. Once that edema has reduced, I'll have a better indicator of where my BP has settled. Of course, I will keep you apprised of my progress.

Next week I have my December Labs and Infusion of Belatacept. I will post those numbers probably Monday afternoon or Tuesday morning in an abbreviated post. Other than that, I will be going out of town post-Christmas, so my next full entry will not be until after January 7th.

May you have a safe Holiday Season!

I wish you all a Very Merry Christmas!

ScottW

Post-Transplant Update: 12 December 2019

Just a quick update today regard the ongoing side effects of the Amlodipine.

My feet have actually gotten worse , in regards to edema.

Here's a photo I just took:

(Peripheral Edema from Amlodipine Usage, 12 Dec 19)

I haven't seen peripheral edema this bad since I was pre-dialysis when my kidneys were dying, and I had no way to get rid of the fluid buildup.

At first, the edema was contained to just my feet, and was relatively moderate. Over the last four or five days it has not only become severe, but has slowly migrated upward; now including both ankles and extending about halfway up the lower legs. Plus, my feet are becoming more and more uncomfortable as each day passes.

So...Amlodipine seems to be a definite "No!" 

My return appointment with the Kidney Clinic is next Tuesday. In a way, I am glad it has taken so long to have that follow-up visit because I have very concrete proof (excessive and worsening edema, consistent diarrhea, elevated BP's) that this med is not the way to go.

Anyhow, that's my update. Of course, I will let you know how my appointment goes, and how we next proceed to unravel the puzzle that is my post-transplant body.

Have a great weekend!

Good Health to All!

ScottW

Post-Transplant Update: 05 December 2019

I finally have time to get this update done, so lets get going.

First, I was unable to get to my appointment with the Kidney Clinic yesterday because of a scheduling conflict that arose with my wifes' job. So, I have rescheduled it for the 17th (the soonest I could get in), and will continue with the current regimen of Amlodipine.

Before I get into that, let's cover my latest lab work...

26 Nov 19 Labs

*Creat:   2.54

*HCT:   36.8 (NC) IR

*Hemo:   11.4 (-0.4) IR

*Lymph:   6.8 (-4.0) Very Low

*Lymph ABS:   0.4 (-0.4) Extremely Low

*Neut:   76.5 (-4.5) High

*Neut ABS:   4.0 (-2.2) IR

*RBC:   4.13 (-0.02) Very Low

*WBC:   5.2 (-2.5) IR

*BUN:   37 (+4) Very High

*CA:   8.8 (-0.5) [A Touch] Low

*GFR:   27 (-2) Extremely Low

*Gluc:   96

*K+:   4.1 (-0.4) IR

*NA+:   137 (-2) IR

*MG:   2.1 (NC) IR

*Phos:   3.5 (+0.2) IR
     NC= No Change     IR= In Range

*Urinalysis

Color:  Normal
Glucose, UR:  Negative
Hgb, UR:  Negative
Ketones, UR:  Negative
Leuk Esterase:  Negative
Nitrite:  Negative
pH, Urine:  5.0 (Normal Range is 5.0-8.5)
Prot, UR:  Negative
Specific Gravity, Urine:  1.016 (Normal Range is  1.003-1.030)

The Lymphocytes are the glaring issue on my labs. I had expected them to rebound after the drop to 10.8 in October, so seeing a further sharp decline was surprising. In conjunction, the Lymph ABS also dropped by half, which is also a problem. And with my White Count lower, I must again take precautions whenever I am out and about around people. These primarily are a mask, and using hand sanitizer frequently--especially after touching doors, shopping carts, common goods, etc--and by being sure to avoid touching my face or ears until I can sanitize once again.
So, no big changes; just extra caution.

My Calcium was only a touch lower than the minimum looked for by my doctors, dropping just 0.2 below that point. I am not worried by this at all as the number is so close to the desired range.

On the Urinalysis, there is only one difference from the previous four months. 
The pH dropped a full point from 6.0 to 5.0. This drop is likely due to my eliminating the Sodium Bicarb from my daily intake (via meds), and my body is probably still adjusting to no longer having that large, constant supply in my blood. Next month should be a better indicator of this lab value.


Next, I am fully off the Isosorbide and Sodium Bicrab tablets, which I stopped the morning after the med switch. My getting started on the Amlodipine has gone a bit worse than I expected.
My blood pressures have all been elevated, both morning and evening. As a result, I have had to take Clonidine both A.M. and P.M, and I am still getting systolic readings in the 130's (morning) and 140's (evening).
The swelling in my feet that I was warned about is definitely more than moderate. Sleeping helps the edema to reduce, but as soon as I am up and moving, it just comes right back. There is no additional edema in my arms or hands; only in my feet.
Plus, my feet become a bit painful at night from what I am guessing to be further nerve irritation from the fluid shifts caused by the edema. My feet are not intolerable in either edema or pain...just uncomfortable; so much so that even if I could stand to have shoes on, my feet would not fit right now.

Other evident side effects I am seeing are daily diarrhea or loose watery stools. and  restless and poor sleep (more than usual, at least) which has caused a general malaise during the day. I can often fight through the tiredness, but it is always there; even after taking two and three hour naps.
So, sticking with the Amlodipine may not be the best thing, when considering the extent of these side effects. I will discuss the side effects I am experiencing at my upcoming Kidney Clinic visit. 

Also, the drawdown of the Protonix has gone well. I have just one more single dose to take in a few days, and then that med will be eliminated. I stuck with the drawdown  schedule I noted, and without the Isosorbide present, I have had zero nausea, acid reflux or gastric burps! (YAY!!)



The cold I was getting has abated almost entirely. Thanks to the rejection med-friendly combination of Mucinex and Delsym, I was able to keep the cold from exploding. It has taken almost two weeks to tamp it down, but with my immune system lower, I am not surprised that has taken so long to overcome.

Despite the peripheral edema [in my feet], my weight has remained consistent. I am currently at 124.5 Kg's as of this morning; where it has stayed within 3/10's on either side for the past week plus. So, despite the edema, my kidney continues to process all fluids properly; it just so happens that fluid is collecting in my feet [because of the Amlodipine] instead of other places throughout my body.

My appetite is good, my dreams are completely controlled, and without the Isosorbide and Protonix, my headaches are fewer! The constant low-grade headache is completely gone...finally!
The TMD is still ever present, but I can now concentrate on only the TMD, and address that from day to day.
If fact, I have had several days--despite the cold--that I took only Excedrin for a mild headache...and it took the headache away! This development is incredibly encouraging! 
It tells me that my TMD is a bit better than I had thought, and that I am closer to getting it under control than since the headaches started back up a few months after the kidney disease really kicked in back in early 2010.
I am hoping that within a few months, I can get the TMD to settle down so much that my T3 use is down to few, if any. Knowing how severe my TMD is, that timeline may not be possible; but I'll try anyhow. I look forward to having zero uncontrollable headaches once again, and now, I am closer than ever to achieving that!

With that piece of good news, I will close this entry.

Upcoming appointments are Nephrology (17 Dec) and Kidney Clinic (also on 17 Dec).

I may or may not get an entry written before that. If not, you'll have a full report on both appointments within a couple of days afterward.

Good Health to All!

ScottW