Post-Transplant Update: 06 April 2020

Labs are in, and the next move has already been decided.

06 April 20 Labs

*Creat:   2.93 (a drop of 0.35)

*HCT:   35.5 (-0.7) Slightly Low

*Hemo:   11.2 (-0.1) IR

*Lymph:   17.2 (+9.7) Slightly Low

*Lymph ABS:   0.9 (+0.4) Low

*Neut:   72.3 (-1.4) IR (Finally!)

*Neut ABS:   3.8 (-0.7) IR

*RBC:   3.96 (-0.07) Very Low

*WBC:   5.3 (-0.7) IR

*BUN:   39 (-6) Very High

*CA:   9.0 (-0.2) IR

*GFR:   23 (+3) Extremely Low

*Gluc:   104

*K+:   4.0 (-0.1) IR

*NA+:   138 (-1) IR

*MG:   2.2 (-0.1) IR

*Phos:   3.9 (-0.2) IR
     *NC= No Change     *IR= In Range


*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:   1.011 (Normal Range is 1.003-1.030)


The somewhat good news on my labs is the drop of the Creatinine. Yes, it came down a bit, but not far enough. I'll discuss more about this below.

The Lymphocytes took a terrific upward bounce into a just-below-normal range. My excitement is, of course, tempered with knowing the yo-yo pattern of this lab value over the last number of months. At this point, I won't hold my breath that it will stay at this level.

The White Count was down slightly; but this is likely due to the extra Myfortic I am taking. I'm sure that my current dosage will be adjusted again should the WBC's drop again next week.

On the Urinalysis, the only change was a very slight decrease of the Specific Gravity; which is of zero concern.


Now, on the Creatinine, I said, "...somewhat good news" because of the non-blood work factors involved.  The peripheral edema in my feet has now extended to my lower legs, going about halfway up to my knees. It stays there every day until I sleep, when it disseminates out of or into the rest of my body. However, after about an hour the next morning, it has returned.

This has also been happening [all weekend] on the days I take the diuretic, Torsemide. Additionally, on the Torsemide days, I have not lost any water weight. In fact, I gained 1.5 Kg's of water weight over the past four days.

Then, there is my blood pressure. Since Friday, the morning readings are inching upward to the low 130's (systolic), while the evening readings have been in the 160's and 170's (systolic).
NOT good!

So, I called my Transplant Coordinator and passed on all of the relevant information. This was passed on to the Clinic doctors who then ordered a Renal Angiogram in order to take a look at the Renal Artery and open it up, if needed. If the artery is not the issue, then I'll receive more instructions.   The Angiogram should happen this week.

For now, that is all I have. All meds remain the same, as does fluid intake, and proper twice-daily vitals. Until the Angiogram happens, it is just a wait and watch approach.

I will keep you updated.

Good Health to All!

ScottW

Post-Transplant Update: 03 April 2020

A limited update!

I received two calls from the Transplant Clinic doctors on Wednesday afternoon. They are very concerned about the Creatinine, my overall blood pressures and my worsening tiredness. However, because of the current Chinese Virus pandemic, a patient must be emergent (suddenly critical or necessary) before the hospital can redirect resources away from that fight.

So for right now, I have two med changes.

1) Double the daily intake of Myfortic [to 720 mgs 2x/day], just in case my White Cell count suddenly spikes due to a rejection or a rejection episode.

2) Increase my Clonidine intake (0.2 mg) from twice each day to three times. It is hoped that the added BP med will help mitigate any further increases in my blood pressure readings.

Also, I am to watch for any unusual or worsening peripheral edema, despite my use of the powerful diuretic, Torsemide.

Last, I am to do full weekly labs once more, starting on Monday. Full labs include, CBC, Renal Panel, Urinalysis, Magnesium, Phosphorous, etc.

IF my lab results continue to worsen, the doctors will move to diagnostics, and hospitalization, if needed.

Fun stuff!

And with the pandemic, the timing couldn't be worse.

I am hoping that all I need is a med adjustment; but with the Creatinine spiking, and the sudden edema in my lower legs I had last evening, a med change may not be enough.
Here are the possible outcomes:


Best case scenario...

The med changes work, and I continue moving forward.


The mildly bad case scenario...

I am having a rejection episode requiring hospitalization and knocking down what immune system I still have for a fourth time.


Worst case scenario...

I lose the kidney, have to go back on dialysis and await another transplant.


I cannot say that this is wholly unexpected. After all, a transplant is merely a treatment and NOT a cure!

Things can and do go wrong with a transplant. That is the reality. If you cannot accept that basic fact, then you have no business receiving one. 

Anyhow, I will get down off my soap box. My lab results will be posted on Monday afternoon, along with any sudden instructions, should the numbers dictate.

Until then, continue to stay safe, doing all you must in order to keep the spread of this deadly virus from exploding.

Good Health to All!

ScottW

Post Transplant Update: 31 March 2020

Last week [during my now weekly lab tests], my Creatinine came back at 2.66; a drop of 0.20 from the retest the week before.
Today, my Creatinine took a not-so-nice jump of 0.62, to end up at 3.28. Plus, my BUN rose ten points, and my GFR dropped five. Both of those last two numbers moved in the wrong direction.

So, there is something wrong with the kidney.

I received a call from my Transplant Coordinator, asking if I was feeling OK; which I am. She was going to check with the Clinic doctors to see how to proceed. As of this writing, I have not yet heard anything back.

Also, last week, the Parathyroid surgeon ordered me to increase my calcium intake by 1,000 mg per day. Additionally, he ordered a Vitamin D test to see if my body is lacking proper Vitamin D. The test results for that have not yet been posted.

I do not yet know how anything will play out; but I suspect that either an ultrasound or a renal biopsy (or both) are in my near future.

As it has been two and a half years since the renal artery was opened, I am thinking that it is maybe time to have that opened once more. (But that is only guesswork.)

Anyhow, I will keep you informed.

Stay safe!
Practice social distancing, as required!
Wash your hands often!

Good Health to All!

ScottW


Update!
**(01 April 20) The test results for the Vitamin D came back. Here are the results with previous test history included:

(Normal Range 30-80)

31 Mar 20:   43     

11 Jan 18:   33

25 May 17:   46

22 May 17:   48

The level is within the needed range, so it would appear that Vitamin D deficiency is not the issue. I will await word from the doctor as to what, if anything, is next.

Post-Transplant Update: 19 March 2020

It has been more than just a couple of weeks since my last entry, but there really hasn't been much happening as I seem to finally be stabilizing...at least somewhat.  Add in the whole Covid-19/Coronavirus/Wuhan Virus pandemic, and I have done very little lately.

For today, let's begin with my latest labs...

17 Mar 20 Labs

*Creat:   3.0 (!)

*HCT:   36.2 (-2.5) IR

*Hemo:   11.3 (-0.5) IR

*Lymph:   7.5 (-6.0) Very Low

*Lymph ABS:   0.5 (-0.4) Very Low

*RBC:   4.03 (-0.20) Very Low

*WBC:   6.0 (-0.3) IR

*BUN:   37 (-1) Very High

*CA:   9.2 (+0.2) IR

*GFR:   22 (-3) Extremely Low

*Gluc:   96

*K+:   4.1 (+0.1) IR

*NA+:   (139 (+1) IR

*MG:   2.3 (+0.2) IR

*Phos:   4.1 (+0.1) IR


*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:   1.014 (Normal Range is 1.003-1.030)

Also, my Parathyroid surgeon ordered a follow-up PTH (Parathyroid Hormone) test. This came back as:    

*PTH:   108 (Desired range 90-100)

Surprise, surprise....my Lymphocytes dropped...again. (The yo-yo ride continues!)

Though there was a small decrease in my RBC, it is fairly minor, and I am not yet concerned about it. If it drops further by next month, I'm sure my doctors will address the issue.

My Urinalysis was nearly identical the last month. The only difference was a minor decrease of the Specific Gravity. No Glucose, no Ketones and a good pH.

The big news from my labs is the Creatinine. Lastly month (Feb), it was at 2.71. This month, a jump of 0.29 happened, leaving me at 3.00; which is rejection territory.

I immediately called my Kidney Clinic coordinator to ask what they might want me to do. After speaking with the doctors, I was told to drink a lot of water that night (Tues.), then repeat the Renal Function Panel the next morning. So that evening, I drank three full liters of water...and got up repeatedly during the night. :(

Yesterday morning I went back to the lab and had my second draw at it came back lower at 2.88. The Kidney Clinic doctors want me to do weekly labs for at least a month to keep an eye on the Creatinine level, and act accordingly should it rise again.

In the meantime, on the days I take the diuretic Torsemide, I am to drink at least three full liters of water, plus any other fluids. This might help keep the Creatinine from rising.

So, mixed results this month on my labs. Mostly good news; but a few zingers, too.

I also had my monthly infusion of Belatacept on Tuesday. The stick (canulation) went well, and the infusion had no complications or side effects.

My headaches have been somewhat better. Most days they are controlled by just using Excedrin. But in the evening, they are ramping up. All in all, my T3 usage is just over two per day; so I am seeing significant progress on getting them under control.

Now, with the Covid-19/Coronavirus/Wuhan Virus, there is much misinformation, along with great amounts of disinformation that is doing nothing but scaring people, and causing unnecessary fear and anxiety. Grocery stores are cleaned out, toilet paper is being hoarded--for no reason, I might add, other than hysteria caused by bad information--and the stock market is crashing. It would seem to be a time of panic and of a global human extinction event. 

Only, it isn't. 

True, the virus has the potential for large-scale deaths, if the appropriate precautions are not taken by the countries affected. However, because of decisive actions, it has killed far fewer people than the yearly flu; but you wouldn't know it from the social media hysterics of the uninformed.

If you want the real information that is actually helpful, go to the CDC website. They have accurate stats and info on the virus. Plus, the White House is keeping American citizens well informed on many fronts. THESE are the sources everyone should be listening to, and completely avoid the paranoid hysteria on social media.

As for me, now being in the "Sensitive Class" due to taking immunosuppressants, I am not the least bit worried about this virus.

Why? because I am already doing pretty much everything that needs to be done. The only things my wife and I added are: 1) She wears a mask while out in public.  2) We both are washing our hands a bit more frequently.  3) After returning home from shopping or being around others, we both immediately put our clothes in to wash, as laundry soap immediately kills the virus. That's all we do differently. 

I already practice social distancing because of my unstable immune system, and my wife was given permission by her boss to work from home so that there is no chance of her potentially bringing home the virus from someone at her work.

So no worries about this virus from me!

On that note, I will wrap up this entry.

Stay safe.

Practice Social Distancing whenever possible.

Follow the advice of the CDC and the experts on the President's panel.

And PLEASE...remember that this brief period of isolation will ultimately result in the Covid-19 virus becoming just a memory.

Good Health to All!

ScottW

**(28 March) In this weeks' lab draw, my Creatinine level dropped from 2.88 to 2.66. As before, I drank extra water the day before the test, which produced the results I was hoping for.

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