Post-Transplant Update: 21 February 2020

Well, I'm a day late on getting this started, so lets go right to the labs...

17 Feb 20 Labs

*Creat:   2.71 (NC)

*HCT:   38.7 (+0.5) IR

*Hemo:   11.8 (-0.2) IR

*Lymph:   13.5 (+8.2) Low

*Lymph ABS:   0.9 (+0.5) Low

*Neut:   77.1 (-1.1) High

*Neut ABS:   4.8 (-0.4) IR

*RBC:   4.23 (-0.01) Very Low

*WBC:   6.3 (-0.3) IR

*BUN:   38 (+5) Very High

*CA:   9.0 (NC) IR

*GFR:   25 (NC) Extremely Low

*Gluc:   103

*K+:   4.2 (+0.5) IR

*NA+:   138 (+1) IR

*MG:   2.1 (NC) IR

*Phos:   4.0 (+0.7) IR

          NC= No Change     IR= In Range

*Urinalysis:   

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:   1.015 (Normal Range is 1.003-1.030)

My labs this month look good. Though the BUN remains far too high, and the GFR is way too low, my Creatinine held steady--which is great!-- my Hematocrit increased for the second or third month in a row, and once again, my Lymphocytes (and ABS) took a big jump after the most recent precipitous drop (...the yoyo continues...).

My Urinalysis looks great! The kidney appears to be filtering very well.

The monthly infusion of Belatacept went well; aside from an extra attempt at cannulation. As is now normal, I have had zero side effects from this med that once saw me label each infusion as 'the Belatacept Blues' due to the excessive intestinal gas and soft stools that would happen for months following my getting on this vital med. I am soooooo glad that those days are behind me! (Yes...pun intended!)

My headache this past week have been manageable. My daytimes have usually been good, with any headaches controlled with Excedrin. However, the evening have seen the headaches increase so that have to take the T3/Excedrin combo. 

The best news on the TMD headache front is that my average daily T3 usage has fallen to 1.8 tablets! This is a terrific decrease in both headaches and med usage!

Hope remains that I will conquer the TMD once more!

My weight has stayed steady, ranging between 121 Kg's and 122 Kg's. The days that I take the Torsemide no longer see my urine output exceed my intake by huge amounts...only small ones of 0.5-1 Kg. However, on the non-Torsemide days, I just retain that fluid once again. So, no win, no loss overall.

Energy-wise, I am still getting incrementally better. I did grocery shopping last evening, and after three stops over about three hours, I came home, put the groceries away...and wasn't exhausted!    Tired, yes. Just not so exhausted that I could hardly move.

So, I'm seeing good progress on this front.

The neuropathy in my feet also improves in very small increments. The numbness has decreased significantly in both feet; but the pain lags behind that improvement. I have actually had a few more  small areas on my feet that feel less pain and heat; but the overall majority of both feet remain tender and hot.  I have been thinking that I may need to examine newer pharmaceutical options for reducing the pain so that I can get shoes on for more than an hour. I will be doing some research on what might be available, and whether or not any of the options are compatible with my meds.

Well, that's all I have for this entry; some decent or good progress all around. (How long has it been since I've been able to say that?)

My next scheduled appointments are both coming up in March. One with my Nephrologist, and one with the surgeon who excised three of my Parathyroid glands. The surgeon just wants a routine follow-up, and likely discuss my daily Calcium intake.

Plus, my next labs and infusion are on the 17th.

With not much to discuss right now, it might be a couple of weeks before my next entry.

Until then, may you all enjoy what remains of the Winter of 2020, and remain safe in all that you do!

Good Health to All!

ScottW

Post-Transplant Update: 12 February 2020

I had planned on getting this post written last week; but a series of escalating TMD headaches made me postpone pretty much everything.

It started last Monday afternoon (03 Feb) with a creeping headache that slowly worsened as the day went along. On Tuesday, the pain increased to a solid 9 all day, which forced me to take my strongest pain med. This helped ease the headache down to a 5, or so; and stayed that way most of that Wednesday. But on Thursday, the pain ramped up once again, hitting and staying on a good 7. The headache was somewhat manageable all day and that night.
But on Friday it kicked up yet again and stayed there for three more full days, sitting at an unmovable 10...not budging one bit, even with strong meds all three days. 
It was a doozy! 
I was photo and audio sensitive, and not only had the shades drawn all three days, but I also wore my sunglasses in the house to help alleviate the intense pain! Plus, sound had to be kept low, as well. Finally, late Sunday evening, the headache finally began to ease. By Monday morning (10 Feb), it was minimal once more. What fun!

I spent all of Monday with that minimal headache, which was well-managed with just Excedrin. It was a welcomed relief!

Yesterday, I had my follow-up visit with the Kidney Clinic. The doctors are pleased with my weight loss, as well as my lowered blood pressures. They made two changes to my meds: 1) I am to take the Torsemide every other day, from now on, unless any untoward side effects occur.  2) My twice-daily Clonidine has been increased to 0.1 mg both morning and evening. I was already on 0.05 morning, and 0.1 evening, so doubling the morning dose is no big deal.
I am to maintain this overall dosing regimen until at least my next yearly review, which is coming up in May; unless--again--something in my labs or daily vitals goes wonky. IF that happens, I'll just call the Clinic and proceed from there.

One of the doctors explained why I will continue with the Torsemide...

When you are on several BP-controlling meds, the body just needs some help getting rid of all of the fluids you take in; hence, a regular diuretic. I cannot explain the pathophysiology of the whole interaction, but that is the reason I might continue using a diuretic for the foreseeable future.


My daily BP's have been doing better, but are still not stable. The morning systolic readings range from the mid-100-teens, up to the mid 130's; while the evening readings range from the high 120's to the high 140's. 

My weight has stabilized around 121 Kg's. It will rise one day, then dip into 120 Kg's the next; so 121 Kg's seems to be the current norm.

With the twice daily uniform dosing of the Clonidine (in conjunction with the other BP meds), it is hoped that I will finally see stable, consistent blood pressure readings both morning and evening.


My sleep has continued to be decent in overall hours, but still poor in quality as I have been somewhat dragging around...headache aside. 

My energy is still increasing little by little. While there are days that are better than others, I find that I am walking a bit faster, climbing the stairs in the house with greater strength, and have days that find me getting a bit restless; which is excellent!

I think that I'll end this entry there.

Next week I have my monthly Labs and Infusion of Belatacept. I will post those lab results either next Wednesday or Thursday.

Until next time...

Have a terrific week, and remember to always smile!

Good Health to All!

ScottW

Post-Transplant Update: 26 January 2020

I obviously did not get this entry typed up when I had intended. So let's just get to it...

Before I start my latest lab results, I have a question... What do you think my Lymphocytes did this month? (C'mon, you know that you know what they did...!)


20 Jan 20 Labs

*Creat:   2.71 (+0.17)

*HCT:   38.2 (+0.5) IR

*Hemo:   12.0 (NC) IR

*Lymph:   5.3 (-7.8)

*Lymph ABS:   0.4 (-0.6) Very Low

*Neut:   78.2 (+2.1) High

*Neut ABS:   5.2 (-0.2) IR

*RBC:   4.24 (-0.02) Very Low

*WBC:   6.6 (-0.5) IR

*BUN:   35 (NC) Very High

*CA:   9.0 (-0.5) IR

*GFR:   25 (-2) Extremely Low

*Gluc:   105

*K+:   3.7 (-0.4) IR

*NA+:   137 (-4) IR

*MG:   2.1 (+0.1) IR

*Phos:   3.3 (-0.4) IR

*Thyroid:   1.97 (Normal Range 0.46-4.88)
     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:  6.1 (Normal Range is 5.0-8.5)
Prot, UR:  Negative

Specific Gravity, Urine:  1.012 (Normal Range is  1.003-1.030)

You know, if it weren't so serious, the constant yo-yoing of my Lymphocytes might be good comedic fodder. As much as I want this to stabilize and strengthen, it has become predictable as to what will happen next month...which I predict will be a rise of at least 6.0. We'll see if that turns out to be true.

The Creatinine is holding fairly steady. The small increase is of no concern whatsoever.

The best news is the Hematocrit strengthening a touch more! This is a great sign!

Along with this, though the RBC's had a minute drop, I like the fact that it held steady this month. While I am still 0.26 below the range [on the RBC's], I remain hopeful that this value will also increase.

On the {Blood] Glucose the normal range is (again) 80-100. However, with have no Prograf (Tacrolimus) that dictates my having labs by 0800a, I usually get my labs done between 930a-10a--after I take my morning meds and also after having my morning TUMS (for Calcium). This contributes to the usually higher than normal Glucose level because of the sugar in the TUMS.

My Urinalysis was most the same, aside from two minor variations in the pH and Specific Gravity; so no worries there.

The Thyroid test that had been ordered came back mid-range. As I have not yet done the research I had wanted to do, I cannot say what this might mean in regards to my Hypothalamus and staying warm. If nothing else, I will find out if we will be trying anything else at my next Clinic appointment.

All in all, my labs are pretty good; aside from the Lymphocytes, that is. 

The TMD has continued the 'up' cycle that had started before my last entry. Plus, I inadvertently ingested food laced with MSG that severely exacerbated the headaches for about half a day. The frustrating part of this was that the MSG was in a product that did not previously have it; so I had no idea that the ingredient had been recently added. 

Other than that, the 'up' cycle should be winding down soon, if recent trends hold up.

As far as the Torsemide goes, thing have taken a small step backwards. I got down to 120.5 Kg's, but have since rebounded to my current 122 Kg's. I do not have the slightest idea why this would happen, but it has. So, instead of becoming frustrated, I am examining my daily liquid intake and output, looking for a 1:1 correlation, which does happen every day. So at least I'm not [obviously] retaining water despite the diuretic.

Plus, my skin looks normal, I am not excessively thirsty and my urine still has a good color; so there is no apparent dehydration...just this odd weight gain.

For now, I will continue the daily regimen as prescribed until my next appointment. 

My latest Belatacept infusion went well. The nurse got the venipuncture in one try this time, and I have had zero side effects from the med. 

My only upcoming appointment is at the Kidney Clinic, which is on 11 February.

For now, have a terrific week, and a safe one, as well!

Good Health to All!

ScottW

Post-Transplant Update: 15 January 2020

Things are going well with the Torsemide.

Due to some issues with diarrhea, I waited until this past Sunday to start taking this potent diuretic; after all, with fluid and electrolyte loss from the diarrhea, it really was best to avoid the Torsemide so as to also avoid potential dehydration.

Anyhow, in the three days since starting the Torsemide, I have lost 4/10, 4/10 and 9/10 Kg of water each day respectively; for a total three day fluid and weight loss of 1.70 Kg's, or 3.74 lbs! (That's just under half a gallon of water!)  After yesterday's huge loss, I did not take the diuretic as instructed, but will start again tomorrow. Remember, any fluid/weight loss of two pounds or more in a single day, then I have to skip the Torsemide on the next day. This helps to avoid dehydration due to too much fluid loss in too short of a time.
So, as of this morning, I weigh 120.6 Kg!   It is amazing that the Isosorbide caused so much fluid retention! I sure am happy that we solved that issue!

My daytime voiding is so good that I have been getting up just once each night--usually around 330a--to urinate; which is a welcome break from 3-4 times each night. As a result, I am getting deeper, better sleep that I have in a long time. 


Next, my headaches. Though I had a severe TMD headache over Christmas--and several days following--I have been in a relatively calm cycle the past two weeks. On average, I have taken just one T3 each day, while taking Excedrin a majority of the time. 

However, yesterday morning, that trend started to reverse, and the headaches increased, as they cyclically do. Considering that it was nearly two full weeks between bad headaches, I will definitely not complain! (Remember, the longest non-PCKD induced, TMD headache I have ever had was a full six months without a break of even half a day! So a few bad days here and there is a huge victory in getting the TMD to settle back down.)


The further I get from the Isosorbide, Protonix and Amlodipine, and with the weight dropping off, my energy is gradually increasing. With better sleep and fewer headaches I am beginning to be more active every day. My energy still suddenly peters out, but I am getting  a bit more done each day than I have in months. 

My daily appetite is good, and I still keep from over indulging during meals so as to allow my body to use its already substantial fat reserves. As my weight loss slows, but my energy keep increasing, I will revisit my daily food intake.
Also, for now I am keeping my daily fluid intake at between 3.0-3.5 Liters of fluid. [as I shed weight and excess water] To keep from dehydrating myself from inadequate fluid intake, I will maintain awareness as to thirst level, electrolyte needs, skin look and feel, and by constantly monitoring urine color for signs of inadequate perfusion of fluids. I fully expect that as I become more and more active, that my daily fluid intake will increase accordingly. 

And with that, I will bring this entry to an end.

Next week I have my January lab draw and Belatacept infusion; both on Tuesday, 21 January. I will post the labs either on Wednesday or Thursday.

Until then,

Good Health to All!

ScottW

Post-Transplant Update: 09 January 2020

Happy New Year {and New Decade}, Everyone!

I cannot believe that another year has so speedily passed. I am now swiftly approaching three full years since my transplant!

Before I get started on this blog entry, it is time for me to remind my readers that this blog reflects my personal experiences with PCKD, dialysis, transplant and post-transplant life. My journey has been very atypical in how it has all unfolded, and it should never be inferred that anyone else going through this process will have the same issues regarding their pre and post-transplant progression. However, if this blog can help anyone better their experience in some way, then I am grateful to have been of service.
Remember, you should always consult your physicians and other healthcare personnel regarding your treatment, then follow their directions and advice at all times, and exactly as given. Only they can know what is best for you!

Alright, let's get going...

My little vacation went by too quickly, and I returned just in time to make my latest appointment with the Kidney Clinic.

The visit was actually much quicker than usual, and we made two changes to my meds in addition to ordering an additional test on my next monthly lab draw; which is coming up on 21 January.

First, the so-so news...

Although I was unable to do my vitals with any consistency during my vacation, the results I did get showed that additional tweaks in my meds were necessary. Since my previous visit and the increase of Hydralazine [to 75 mg 3x/day], my blood pressures remained elevated despite the routine usage of Clonidine (.05 mg morning, and .1 mg evening). The A.M. systolic readings averaged in the 130's, while the P.M. reading were in the 140's. While the readings were at least stable, and without wide swings, my blood pressure remains too high which, of course, stresses the kidney and inhibits it from working at the best possible efficiency.

Second, the good news...

Most of the edema caused by the Amlodipine has left my body. The greatest loss of the fluid happened within this past week. As a result, my feet almost look normal, my lower legs are thinner, and my face, which I had not realized was also affected, is less rounded; leaving me looking a bit healthier.

Third, the great news...

Since getting off of the Isosorbide and Amlodipine on 17 December (the date of my last Kidney Clinic appointment), I have now lost a total of 3.2 Kg's !
Do you remember how I was telling you that the Isosorbide can cause unremittent weight gain? Well apparently now that it (the Isosorbide) is out of my body, the weight is dropping...and I'm not even trying to lose any! Plus, as of this morning, I had dropped an additional 3/10's of a Kg from yesterday.
Also, the doctors are extremely pleased that my latest labs finally show great overall stability. We are hoping with the weight sloughing off that my next labs will look even better.

Now, following my Clinic visit, here's the latest approach...

All of my meds will stay the same aside from two differences. First, the Hydralazine has been increased once again; this time going from 75 mg 3x/day to 100 mg 3x/day.

Second, to help further eliminate additional fluids from my body, I have been placed on a temporary regimen of Torsemide 50 mg 1x/day in the morning.
Torosemide is a diuretic similar to Lasix, but its effect lasts longer; being effective from 6-8 hours after onset of diuresis. The hope is to eliminate as much extra water on my body as we can, thus helping to lower blood pressure on top of the increase of Hydralazine.
I will continue with the Torsemide for one month; at which time I will have another visit with the Kidney Clinic doctors, and my progress re-examined.

Lastly on the visit, I off-handedly remarked that it would be nice to stop being cold all of the time, and the doctor asked if I'd had a Thyroid test since the transplant. I did not recall having had that, so a test was ordered that will be included on my next lab draw. The reason for this test is to determine if the thyroid is producing enough of two chemicals that help regulate heat in the body. The Thyroid is stimulated by the Pituitary gland, which itself is regulated by the Hypothalamus; also known as the body's thermostat.
I do not yet understand the entire interaction between the three, but I am including a basic explanation at the end of this blog. As far as what will be done if the labs reflect an issue, I do not know. I will do some studying on the matter in the coming days.

So, for the next few weeks I am hoping to see additional weight loss, lowering BP's, increased energy and better overall progress. I'll keep you updated.

And with that I am going to go ahead and finish this entry. I will have a new one done next week that will keep you apprised of my progress.

Upcoming appointments: Lab draw and monthly Bletacept infusion on 21 January.

Until next week...

Good Health to All!

ScottW



*(Basic explanation of the Thyroid, Pituitary and Hypothalamus Interaction)

Your thyroid gland is a small gland, normally weighing less than one ounce, located in the front of the neck. It is made up of two halves, called lobes, that lie along the windpipe (trachea) and are joined together by a narrow band of thyroid tissue, known as the isthmus.

The thyroid is situated just below your "Adams apple" or larynx. During development (inside the womb) the thyroid gland originates in the back of the tongue, but it normally migrates to the front of the neck before birth. Sometimes it fails to migrate properly and is located high in the neck or even in the back of the tongue (lingual thyroid). This is very rare. At other times it may migrate too far and ends up in the chest (this is also rare).

The function of the thyroid gland is to take iodine, found in many foods, and convert it into thyroid hormones: thyroxine (T4) and triiodothyronine (T3). Thyroid cells are the only cells in the body which can absorb iodine. These cells combine iodine and the amino acid tyrosine to make T3 and T4. T3 and T4 are then released into the blood stream and are transported throughout the body where they control metabolism (conversion of oxygen and calories to energy).

Every cell in the body depends upon thyroid hormones for regulation of their metabolism. The normal thyroid gland produces about 80% T4 and about 20% T3, however, T3 possesses about four times the hormone "strength" as T4.

The thyroid gland is under the control of the pituitary gland, a small gland the size of a peanut at the base of the brain (shown here in orange). When the level of thyroid hormones (T3 & T4) drops too low, the pituitary gland produces Thyroid Stimulating Hormone (TSH) which stimulates the thyroid gland to produce more hormones. Under the influence of TSH, the thyroid will manufacture and secrete T3 and T4 thereby raising their blood levels.

The pituitary senses this and responds by decreasing its TSH production. One can imagine the thyroid gland as a furnace and the pituitary gland as the thermostat.

Thyroid hormones are like heat. When the heat gets back to the thermostat, it turns the thermostat off. As the room cools (the thyroid hormone levels drop), the thermostat turns back on (TSH increases) and the furnace produces more heat (thyroid hormones).

The pituitary gland itself is regulated by another gland, known as the hypothalamus (shown in the picture above in light blue). The hypothalamus is part of the brain and produces TSH Releasing Hormone (TRH) which tells the pituitary gland to stimulate the thyroid gland (release TSH). One might imagine the hypothalamus as the person who regulates the thermostat since it tells the pituitary gland at what level the thyroid should be set.